Most of you know that Ray died on 19th September, late in the afternoon. I haven't got the death certificate but likely cause is the pneumonia he couldn't get rid of plus a lot of other factors. As we all know Ray has been seriously ill for some time. I had been with him most of that day and the three days before but had gone home to have a shower and come back. A nurse rang for me to go back but he died before I got there. I was relieved as he had been struggling to breathe, for two days had refused food and drink and really was just so tired and yet could not sleep.
The doctor ordered pain relief and put him on oxygen and the nurse who was with him said his passing was peaceful, Shirley and I and Trevor all went and sat with him for a while and our other son Steven came with his work partner Phil and picked him up and took him to the funeral home. I guess that is as much as you can do. Since then I have been making and receiving phone call after phone call as friends find out and ring with their condolences.There is so much to do but I still have Shirley here and we are doing it a bit at a time. Shopping lists are everywhere, growing and growing.
As our local paper does not come out before the funeral we are having to notify as many people as possible by phone call, email and Facebook. I know that is not an ideal situation and less personal than I would like it to be but it is the best I can do. Sure I will miss telling a few people and they will be mad at me but then if they have not been in touch recently how will I know if they wanted to know or not? Three out of four of Ray's brothers and sisters are coming - one sister is "just too busy".
Our minister came yesterday just as the funeral arranger (a nice Salvation Army lass who knows Shirley) was finishing her work and so we have the funeral arranged, the plot selected, the program for the funeral written out. We are not catering for the afternoon tea but will pay a small sum per head to have the church ladies prepare and serve it for us. Hour by hour it all seems to be coming together. A few friends have called in and spent time with us, Trevor is here every day, Steven calls a few times a day, even my sister came to visit with us today. It is just as well we have cakes in the freezer and a lot of groceries we purchased yesterday.
I have had great support from our Lions Club, Apex40 Club, church friends old and new. A lot of you lovely people have posted me messages, sent emails, posted on Doreen's thread or on my Facebook page. Thank you so much. I cannot tell how I feel as I am simply trying to make sense of it all. Oh to turn back the clock and slow time down and have some time to come to terms with it all. But sensibly there are a multitude of tasks that need to be done and I have to do them with the help of others. Club memebrs from WAGS our stroke recovery group have urged me not to withdraw, to continue to be a member, attend meetings etc. It is too early to make those kinds of decisions.
Our minister said I am the kind of person who will keep busy as I usually do but to look out for the fall over the cliff that brings back hard the love now lost, the things no longer shared, the precious memories no longer created. I "know" all about that but I think knowing isn't everything, we are all human and do our best in every situation but acceptance is always hard won. I need to have a plan but need to opt out when I need to, nothing like a nanny nap when needed or a walk on the beach. I have friends on standby for cups of coffee or just a chat when I feel alone. I don't know how I will go, just again need to take it one step at a time as usual.
I have asked the church and other organizartions to give me some time off and time out. No I will not be preaching the sermon on 30th of September, I am not going to a Lions meeting or taking on any outside task at all. There is still so much that will need to be done plus Mum to visit in her nursing home. I am expecting a deluge of paperwork as I sort out what is left of our financial affairs. It will take time, time, and more time.
Shirley's husband Craig is coping at home with the little ones, his mother who is visiting and has been sick herself and the tasks he still has time to do for his Salvation Army Corps. He is in touch with Shirley a few times a day, catching up with our news, asking about tasks she does and he usually doesn't do. Luckily the chikldren are now on holidays for two weeks and Shirley and Craig are on holidays too as of Monday. Craig and his two will be coming up then, delayed a day as he will have to take his Mum home first. I am looking forward to them being here.But I will make sure they move on a few daysafter the funeral and enjoy some family time. I will be okay or not depending on the day.
Thank you for your ongoing suport .
So much has happened since my last blog. Looking at it now it seems as if all that happened months ago but it is only a week ago.
My Mum died on Tuesday morning 5.20 am. She is finally at peace. I am glad and sad at the same time. I was with her all last Sunday afternoon and most of Monday. At 6pm on Monday one of the nurses told me to go home and get some rest. You can imagine how that didn't happen! As if I could sleep with her so close to death. At 5.30am Tuesday morning the phone rang and I was told she had passed away. After such a long time as her caregiver as well as Ray's and pre-2000 Dad's I am now free to move on after whatever grieving period I find necessary. I think I will be okay but who knows how I will react in the future?
The funeral arranger said: "It seems such a short time since I saw you last" and it was just two months and a day.I was so grateful to the nursing home staff for all they did to keep Mum going. My older friends are rallying around again, some knew Mum from when she lived with Ray and I for two years and some have seen her since she has been in care as one of the church ladies was in her room and they visited her too. A death notice came out in today's paper so although a lot of her old friends have passed away I am sure there will be people in the community who still remember her fondly.
I had Mum dressed in her Norman Hartnell dress, it was a family joke really as she always said: "The Queen has Norman Hartnell dresses too." I have held onto it since I cleaned her house out in 2001. A while ago when she asked me if she had nice clothes still at home I told her I had it and it was still her best dress . My sister and I did meet to discuss the funeral arrangements and we agreed on most things so I am hoping it all comes together as Ray's did two months ago. As before Craig will do the eulogy on our behalf because I am sure I would breakdown if I had to do it. I did Dad's myself and that was really hard.
I am finding making the arrangements for this funeral more difficult as I feel as if this one is more on show. Because of the rift with my sister she is very critical of me and what I do so I know there will be a lot of criticism about minor points. My son-in-law advised me to just do it my way and stand by what I have done. I was her main caregiver for so long and knew exactly what to do but now I have reverted to being her daughter, one of two, I seem to have lost confidence in myself and my decision making. With Ray's funeral I just did it my way and that was good enough for most people. This time I wonder if every item, every song, every prayer is what Mum would have wanted and if my sister and her family will approve. I know this is silly of me but it is how I feel.
Mum's funeral will be on Tuesday 27th November at the same church as Ray's was. The internment and graveside service will be at Wamberal Cemetery.She will be in the same grave as Dad - united at last. It certainly seems a long time since she died to me today but it is less than 4 days. Such a busy time when there is so many people to notify and so much to do and it is a big emotional strain too.
Shirley, Craig and family arrived here late Tuesday so I have had the blessing of their company. They have been a help with what I needed to do immediately.The boys I know are only a phone call away. I am hoping that I will cope okay with this second funeral but it is one thing to think you are strong and quite another to get through an ordeal without breaking down. Last night we joined Trev, Edie and family for a meal together. Naomi finds her cousin Alice fascinating and loves to play "peek-a-boo" and other games with her. And I know Steve keeps in touch by phone and will come over if I need him. Shirley and family have gone back to Shelll Harbour for three days to do the servics needed over the weekend but will be coming back here on Monday.
I helped our soon-to-be Deacon Kathy with the communion service at Berkeley Vale Nursing Home today. Our minister is having a week's vacation while his family from interstate are visiting so Kathy and I are the relief team. lt was strange in one way to be back there but good in another as assisting in the service and writing and giving the little talk we use in place of a sermon was healing for me too. To have yet more of the staff come up and chat and express their condolences on Ray's death was good too. Yesterday I was at Nareen Gardens for Freda's service and once again staff members came up to me to express their condolences for Mum's death. It is hard to take but good to have behind me. What does not kill you DOES make you stronger.
I'd like all my friends to keep praying as the sleepless nights are with me once more. It is a terrible feeling knowing that not everyone is supporting me as you all do. But all I can do is strive to honour my Mum in what I do and keep walking forward day by day.
Ray is home. We've had our first fight already so some things haven't changed...lol.
I picked up the quad stick at the "lending store", the hospital provides it free on loan for three months so he shouldn't need it after that. I got lost because it is up the back of an old industrial estate, waaay up the back. But still I got it. I've also borrowed a narrower shower stool but have decided to have the little store room next to the toilet made into a shower room anyway. That way there is no hassles when he has to maybe have a wheelchair style shower chair. Looking down the track that could happen.
I have all the gear to give him his first insulin tomorrow morning, still shivering in my shoes about that but a lot of you have shared your experiences so I know that practically I have to do it and it will be okay. Also got a run through all his meds, he has five different or new drugs now, the doctor might not want all of them continued, we'll find that out tomorrow when we go to him. There are meds for gout, a third diabetic med, a new one for the arhythmia and the calcium supplement and the b12 shots, weekly now, monthly later, so that is a heap of medication. Most of it will be subsudised so hoping not to have too much expense there.
There is now a shower nurse twice a week and hopefully the minder on Friday mornings to give me respite. I will only at this stage have the help for six weeks as this is short term care package designed to give caregivers the incentive to bring an invalid home. Then if I am lucky I will get the long term help until Ray reaches 65 in September and then he goes into another catagory and I qualify for help more readily, well that is the theory anyway.
I have had three very sad phone calls today. The first was to tell me of the death of an old friend, the second to tell me another old friend has just entered hospital in the final stages of terminal cancer which is sad but he is an older man and has had a wonderful life. The third to say another friend has just had a massive stroke, right side paralyzed, no speech, nothing but the hand squeeze to show he can hear. He is a larger than life storyteller of note who has been the judge of many a debate and once ran for parliament so his speaking has made him famous locally. What a crying shame! He is maybe 65.
Since Ray has had his strokes and limited abilities we have made some fine acquaintances and a few good friends. All are much older than us and so slowly we will lose them, it is one of the disadvantages of having older friends. But when Ray stroked at 57 and had to retire these were the people who offered us help, emotional support and their friendship. We all have expereinced losing those we thought of as friends. For us some disappeared immediately, some fell away as the years went by so we have been grateful for the company of these delightful older women and fellows but are now destined to see them pre-decease us both. Sometimes life is like that.
But on the brighter side I also received two offers of help, one to supervise the tradesmen I will have to get in to do the new shower room and another to give me a sitter for Ray if I need to go out. I will sometimes have to get away, to go the the pharmacy or to get my hair cut or maybe to see Mum for an hour's visit. This could be used when Trev is working nights so with him in the house as a back up I am sure this sweet little older lady could manage. She just has to keep Ray leg-roped to the chair.
And that was what our first fight was about. I put on some laundry and Ray took the opportunity to go to the bedroom. He is supposed to have me by his side when he walks for the first six weeks he is home as he is still tippy on his feet and the fractured pelvis is not entirely healed. I need to write it on posters all over the house and record it on a continual loop and flash it across the television screen: "Ray, please do not walk unless Sue is with you".
So if you see a rocket crossing the upper atmosphere trailing what looks like washing that will be a banner reading:"Ray, where is Sue? She should be right beside you."
Sometimes when asked if I want to go back to …whenever... I say “No, I’m fine with where we are now”. But today I just want to go back to a few weeks ago. Anywhere back to where I was standing on that last plateau thinking things had finally settled down and we could maybe do some planning again….
Ray and I went down to visit our family on the south coast, he was well for four days but had a “possible” stroke last Monday (30th May). Our doctor said that was the likely cause of the instability that caused him to have four falls in three days at our daughter’s house. The last fall resulted in his quick trip to the hospital on the night of the 1st June. There the staff did some tests and some xrays and told me he had fractured his humerus at the head and they could do nothing for him and sent us home at 1.30am.
We went to our local doctor today and he asked me to take Ray to the Radiology Centre nearby to get them to do the xrays of his shoulder again as the hospital did not give them to me. The result was the same, large crack across the head of the humerus, just below the shoulder blade. The radiologist commented on the wide spread of bruising and commented he was lucky that that was all that was broken. I think so too as originally we were told the femur was probably broken too as he had a lot of pain in that area. Now he has a large black bruise above his left hip but his leg seems okay.
Ray sat in the doctor’s rooms and fell asleep, he looked terribly tired and at this stage somewhat confused, as if life does not make sense to him any more. I know he has lost a lot of his cognitive powers again, whether or not they come back we will have to wait and see. The most annoying one is that Ray can no longer understand how to stand up. He can stand eventually but I have to explain over and over how to do it, stretch his hand away from his shoulder, steady him, prompt him and do all but physically pick him up. How he could have forgotten this is a mystery, if he will remember again is unpredictable.
Ray is now even more high care. For all of you who have been dealing with a husband that has to be shadowed everywhere he goes - how do you do it? Ray cannot stand alone, walk alone, sit down by himself. I now have to be right there helping him. I have to tell him where I am going and what I am doing so he knows where I am in the house. I haven’t had to do this up till now and already it is driving me crazy!
I had a ring around today trying to get more care. The Australian system is that you have a provider and an amount of hours you can have, you can in some cases use a second agency at a higher rate to give you more care hours, it look like I will have to do that now. I need someone to help me with showering each day as I cannot hold Ray up and wash him efficiently too. Our provider seems reluctant to help me with extra hours.
Ray seems not to be able to stand still, his left leg constantly jumps and he moves his right foot sideways as well. This is another constant worry as it affects his stability. Tomorrow Trevor will come over and help me shower and dress Ray but I can’t ask him to come over every day.He has just been asked to do a second interview for a fitter's job, it would be wonderful if he gets it.
On Wednesday I have an assessor coming who will decide if I can get more care. What a pity the hospital couldn’t have at least helped with some of this. If he had been hospitalized locally I could have asked for a social worker or discharge planner to help, but only if he had been put into a regular ward first. What a useless system for emergency care situations.
Tomorrow I also need to start cancelling our regular activities. I have already cancelled Ray’s Scallywag group activities two Friday afternoons per month - he needs to be able to walk up steps to continue there. I have postponed Daycare for a few weeks until I know if he can get to the bathroom by himself. He needs to at least do that. Tomorrow I will discuss us not continuing to go to Craft for a few weeks, missing a couple of months of Lions meetings etc. It is not something I want to do, it is something I have to do.
I don’t want everyone who reads this worrying about us, or feel sorry for us. I am sure it will all work out in the end. Like most of you I just need to blog it to sort it out, make sure life is in perspective and I am not just sitting here obsessing over it. I am always a forward planner, just now though there doesn’t seem anywhere to go.
It is a little hard to write this blog for many reasons. One is that I don't have a working computer and am typing this with one finger on a tablet, another is that I am not feeling good about life right now. I went for my four months check up today and by the way the radiologist spoke all is not well. So I go for more tests next week. I just hate it when a medical professional pats my hand and calls me "dear" as that usually means there are problems ahead.
I had a good Christmas with five of my grandchildren together with my daughter, son-in-law, his brother and mother, my fomer daughter-in-law and several others together for what turned into a real feast. I had seen Trevor and Alice a couple of weeks before so although they were not with us they were by no means forgotten. I miss Ray at every family event but I know Craig's mum was also missing her Don so felt somewhat for her too. It was good to be in lively company and enjoy family time.
I think in a way as time goes by I miss Ray more when our families get together. I understand now why some families put out an empty chair at special family events as it felt to me as if there should have been an acknowledgement that the two grandfathers were missing. I think Craig's mum felt that way too. It seems sometimes as if part of me is missing and it makes happiness seem like something that used to happen rather than something that happens now.
Is life still good? Yes it is. My word for this year is NEW and that is because it is NEW every morning, and whatever is happening in my life I want to go on feeling that way. I mean to turn what could seem scary into something exciting. I want to go on enjoying life. Today may have been scary in a way but tomorrow the sky may be blue and good news of some sort may brighten my day.
I don't know how far ahead I can plan life but I still need to make the most of this summer. I have plenty of gardening to do, the elephant still needs painting, and there is so much to do in the house. I have friends to see locally and further afield so I need to go on enjoying what I can. The diagnosis may not be as bad as I am thinking right now. Time to put my Big Girl pants on and keep on going.
I know a lot of people are much worse of than I am and really at 70 I have plenty of good memories to look back on so why am I worrying? I guess because I am human, and will always love life and want to live with health and wellness . But if that is not the next part of the journey so be it.
It seems like a fortnight since last Saturday and it is only five days. Ray is still in hospital, still in bed or on the chair beside the bed, still not walking or weight bearing. He is still undiagnosed as the xrays have been "inconclusive". So more tests have been ordered, still a bone density test to go.
Today they had a second try at the nuclear scan but when I asked the nurse when we will get the results she replied: "Thursday afternoon, Friday morning, maybe." Seems it is all done by a private contractor who takes their own sweet time to get the results back to the hospital. How I hate this letting it all out to private tender with no responsibility to patients or management. No treatment till all the results come in and bedrest for a patient who is in a situation of "move it or lose it".
Today when I left the hospital I was feeling really bad, the heat of the afternoon didn't help and then I was caught in a traffic jam caused by road works and so I called in to see an old friend. She was widowed two years ago and is a person who has cared for aged parents as well as her husband for five years prior to his death so she does know how all of this is affecting me. It is good to talk to people who really understand, isn't it?
Ray is laying on the hospital bed watching the tennis, or flicking between channels and not a care in the world. Now he is getting cut-up food and easy to eat meals like mashed potato, pumpkin, sliced beans and casseroled steak the meal he had for lunch today so he is able to eat without assistance. He has plenty of nurses and aids to look after him, his meals arrive at the right time, he has clean clothes brought in by me every day, what is there to worry about? I think the impact of this new disability is lost on him, or maybe the pain killers are fixing the anxiety as well. So he just sits propped up by pillows with a happy smile on his face.
I have cancelled all his outside activities until further notice and as people phone me to ask how he is I am asking for their prayers. Frankly I don't know what to pray for at this time. Healing for sure, I want him to be healed, healthy and pain free. Comfortable nights for him and for me is a given. And patience, I need loads of patience, to deal with staff who seem not to have a clue about the life of a stroke survivor and his caregiver. Maybe it is easier to just hand out the medications than to answer the questions. Maybe they are so used to things taking so much time that they are just content to wait?
I am sick of waiting and yet I know this is just the beginning of the process. Depending on the results of the scan there will be surgery and rehab or just rehab. Depending on Ray's ability to follow instructions and co-operate with the therapists he will have some time learning to stand and walk again. This will be done in a pleasant setting he is already familiar with having been there a few times before and with it all tailored to his pace. Thankfully that will be the case and he will soon be walking well enough to come home. As the event was a fall and not a stroke this should not take as long as previous strokes. Unless of course there is extensive surgery to repair the pelvis. That would make a huge difference time wise.
Whatever happens I know I have to contain my soul in patience. Not a easy thing for me to do.
I have borrowed one of Sarah's (spacie1) sayings for my title. I have just been chatting with her and I know Gary is so much worse than Ray and yet I was pouring out my troubles to her as if she hasn't got enough of her own without the burden of mine. But I sure need to tell someone exactly how life is for me somedays, without the sugar coating, without the :"I'm fine thanks and how are you?" and without the blank look that comes over a non-caregiver's face when you tell them the trials you face each day looking after someone who is physically and mentally disabled.
I am finding it hard to read other people's blogs today. Because I feel so down today I can't get that whining tone out of my voice. Because I feel so down today what other people are going through seems so trivial. Like talking about a hangnail when the person in the next bed is having a leg off.
I am just so upset about what is happening in our lives. I have tried so hard to look after Ray and yet we now seem to be at the stage where it is all getting too hard. I am coping yes, I am enjoying life no. I need a break and yet I am afraid of what others will say when I take one. The snide remarks that HE was in care but SHE was out enjoying herself. I know a couple of people that will say that. And they are not part of the crowd observing the day-to-day activity here, but a couple who ring occassionally and tell me what an angel I am to take on such a heavy burden and do such a good job of it. Angels may exist in heaven but the rest of us do the burden of the dirty work here on earth.
The first thing I smell of a morning is urine. Ray has a bottle by his side of the bed but is not always good at using it so he has a mat which I wash that the bottle sits on. That is one of my first waking thoughts:"Has Ray gone past the bottle again." This morning he had an "accident" on the way to the toilet. Why do I keep on calling them "accidents" when he does it so frequently? Isn't there some other word I can use? Maybe I can call it a frequent fecal event? He didn't clean it up, he never does, that is my job. Afterwards he doesn't even acknowledge that it happened. It is as if he doesn't acknowledge it then it didn't happen. So when the doctor asks him does this type of event occur frequently he answers:"no". And as it is not in his memory when I answer "yes" he frowns and shakes his head.
He has a lot of bad habits now that he didn't have before at least not the the same intensity. The trivial , annoying ones, leaving taps dripping, leaving the milk out on the side, not wiping up spills. It is as if there is someone just waiting somewhere to clean it all up. That mysterious "mother figure" that we all need who will come by and sweep, clean, mop and dust so we have no responsibility to tidy up for ourselves. I know to a certain extent that was there most of Ray's formative years. He always had someone to clean up after him. Now it is beginning to grate on me. I want him to at least attempt to tidy up or acknowledge that there is a problem. Instead of him just walking away.
And I could go on and on listing his faults until you were so tired of reading this rant that you were grateful for the little irritations of your own lives. And I realise for some people my rants are trivial in the extreme and what you are coping with as a survivor or caregiver is much worse and I do apologize.
Usually after I get this far through the blog I back out and don't publish it. I wonder what you would feel if you could see my raw emotions, my tears of self-pity. But maybe if you tiptoed into the next room you could see Ray laying there asleep, quite oblivious to the turbulent emotions I am feeling. Because even when I yell them at the top of my voice he never acknowledges that he is in any way to blame for how I feel. "What are you so cranky about?" he says. What indeed.
While I was in a daze for most of the last two months because of Ray's death I won't mourn for Mum in the same way. My mother was scornful of the sorrowful, she would say: "Look at them sitting there with long faces." so I will not mourn her. I will try to be as philosophical as those people who tell me "she was old" ( I know that), " she is in a better place" (I know that too) and she wouldn't want me to "sit around with a long face" (true). So I am trying to rejoin life again.
I have just finished writing the 50th Christmas card. I have sent some with a short computer-generated letter, some I have hand-written a short message in, some I have enclosed either the Graveside service sheet from Ray's service or from Mum's as a lot of those once-a-year friends and acquaintances may not yet know about their deaths. It would be easier to just sent a letter but we somehow expect a card, don't we? Of course for those of you on my email list or Facebook page you are way ahead on the information highway. I probably have 40 or so more cards to go. Next year I am cutting down the size of the list,
Yesterday I went to a funeral of a long time congregation member who had been in the legal profession. A lot of the older men had been to college or University togather I learned when talking to them. Some wore expensive but ill-fitting suits which made them look as if they had shrunk a lot since buying them,knowing how stressful that profession is I wondered if they have been worn down by time. Many attenders were well over 80 but seemed happy to see friends they knew and have a bit of a chat. The funeral was a very long, very formal one and the participants were very grateful for the cup of tea or coffee and cakes that followed. I did bring goodies this time, it is time for me to give back having had two funeral teas provided recently.
I went out to lunch today with the women from my craft group. I felt happy going out but somehow it is like there is a glass screen between me and others. I just can't get past that and I can't express real joy at the moment. The best I can do it to try and laugh in the right places and smile and be pleasant. I am still adjusting to life without Ray, life without Mum. Some people can understand that, some people can't. Some say:"your Mum wouldn't want you to be upset". That could be true but it doesn't make it any easier.
Tonight I went to the Lions dinner. It was a mixed night so we had wives there as well. Some of the older men were really nice and expressed their condolences on the death of my mother and their regrets that they couldn't be at the funeral. It was not expected that they be there as this is a very busy time of the year. They were there for Ray's funeral and that is what counts for me, and I told them so. It is nice of them to try to be supportive.
I had a phone call from an old friend who I used to work with at Social Security, when I started he was the "death desk" a position I held later. He said he used to calm the widows down by telling them: "Every time you sign your name on a document you become less Mrs Jack Smith and more MS Norma Smith, so you are not losing your life you are actually getting it back." I must say that is not the thought I've had, nor do I agree with it. But I think he was trying to be comforting. I just wondered how many poor widows left his desk howling their eyes out.
Obviously our Lions Club are struggling with staffing for all that has to be done at this time of the year so I put my name back down on the Christmas Stocking ticket selling roster. I will just do once a week for the next three weeks. It is not a lot and I should survive. The last thing I want to be is a drag on the Club especially as they have all been so kind to me.My partner for ticket selling, Bob, who is in his mid-eighties, said kindly it will be good to "have the old team back together again."
So now I have a list of things I have to do between now and Christmas. It is the busy season, the party season, the end-of-the-year function season. It may also be the season to be jolly but I am not sure I am up to jolly as yet. I am going to help out with one of the once a month meet and greets we hold for the very elderly, just a big morning tea as a Christmas break-up next Tuesday morning. I think I am up to that. Little steps as in any form of recovery, small details, small decisions...nothing drastic.
Maybe by the time all the various committees go back at the end of January, beginning of February I will feel more settled in myself and more willing to take a greater part in church life. But in the meantime life goes on.
The end of week one of Ray's hospital stay saw very little progress made. He had eight xrays and scans of various kinds to get a diagnosis. The hip joint on the left side, where he already has the hip pinned is cracked across. I guess that means an operation but so far no-one has said they will do it. The orthopaedic specialists will consult tomorrow and I hope one brave one will agree to do the operation.
If Ray cannot have the operation we look at the worse case scenario: Ray spending the rest of his life laying in a bed in a nursing home. Of course if by a miracle he can eventually stand without pain and even take a few small steps I will bring him home. I will not put him in a nursing home unless it is impossible for me to manage him here.
We have got to the stage where friends are rallying round. Some phone calls and a few hospital visitors from Thursday onward started to show us that we are not alone in all of this. The messages from cyberfriends here are much appreciated. Each day I go in to see Ray and say X,Y and Z called and send their best wishes, A,B and C left emails, friends from Strokenet say "hi".
Of course a lot of people want to know if there is anything they can do and with the exception of prayers and good wishes there isn't, but it does help to know that others are thinking of us in this time of struggle. Further down the track I will need people to sit with Ray, maybe pick up groceries or prescriptions or other needs so then I will ask for them to do something specific. In the meantime I tell them visits are much appreciated.
I went out to lunch at our son's place yesterday. I told my daughter-in-law I could only stay an hour or so but three hours went by before I went back to the hospital. Today I went in to visit after going to church and then my sister and her husband came and we came back here for a late lunch. It all helps, both to have someone to discuss things with and also to have the distraction. My sister tells silly jokes with facial expressions and actions and today she managed to make Ray laugh. That alone was worth the visit.
I guess there is a situation now that sounds more serious than some of the ups and downs we have had in the past and people do realise that this is a crisis where their support is needed. I hope the prayers etc continue as I am sure this is the beginning of what will be a trying period for us.
For those of you who were fortunate enough to recover from stroke with a minimum hospital stay and a convalescence at home it must be discouraging to hear of the ups and downs some other survivors and their caregivers have experienced. But that is life. No two strokes the same, everyone recovers at their own pace. And the surviving the experience is what counts.
This period of time we'll get through - with a little help from our friends.
It finally happened. Last night around 9.15 pm I got a phone call to say that Ray was in the Rehabilitation Unit that produced the miracles for him in 1999 after his major strokes. Then he spent three months there and went from being a stretcher case to walking out on a walking stick. I am hoping they can repeat the miracle and put him back on his feet again for me.
It is 18 days since the fall that broke his pelvis and fractured his acetabulum ( left hip joint) and so far he has had very little practice walking apart from nurses taking him to the shower using a Full Arm High walker, two nurses and a gait belt the last coupe of days. Not an effort wasted but hardly walking on his own. So he has a long way to go but I am confident that the physiotherapists at the little rehab unit can do it. There are still some members of the staff that were there on his original stay and I am sure they will act as cheerleaders and help him to keep his spirits up. That is so important.
This rehab unit was once part of a cottage hospital, now on the Central Coast we have a couple of mega hospitals , two large private hospitals and the little ones are used for geriatric nursing and this one for rehabilitation, mostly of amputees and stroke survivors. There is nowhere better than a little 18 room 4 to a bedroom unit like this to offer inspiration ("there are a lot here worse off than me"), dedication ("come on Ray, you can do it") and perspiration , well it is very hot in the gym with all that effort taking place! I am so glad he is there, now I can believe that he will soon be walking well enough to come home.
By the way, thank you for the sixteen or so people who came to chat Tuesday night. The banner announcing chat sure helped to swell the crowd. I did so enjoy your company and towards the end a real party mood took over. It really lightens my spirits to join in a lot of fun and nonsense and know that behind it are some people with really big hearts offering each other support and encouragement. Good on you people, you ROCK!! I hope the last one out switched off the lights and secured the premises?
The drive over took me 45 minutes as I got to the school safety zones just after 2.30pm, the starting time. I will have to organise myself better in the future. The journey back took me 35 minutes and my heart was much lighter by then. I am going to approach a few of my older friends as see if they would like to come over with me to keep me company. A lot of them like a drive and it is a very pretty drive, if somewhat long compared with the other driving I do. I know a lot of the caregivers here will relate to that. I know it is only for three or four weeks so I will just do it without complaint ( or maybe an occassional vent!).
All the family and friends will soon know he is there and hopefully some will visit. There was a fellow Lion and his wife talking to Ray when I got there. He is our Tail Twister a man given to telling tall tales in order to extract money from us. His opening remark to me is always:"Got anything on Ray for me I could use to fine him tonight?" As a man descended from Irish stock he has a real gift of story telling and tells a joke that can make you laugh without really knowing why. It was good to see Ray smiling and happy after their visit. Like a lot of others we have lost friends and contact with relatives etc due to the ravages of the stoke but some friends have stood by us and I thank God for them all. And for those here who encourage and inspire me so much.
I finally feel as if there is a chance that Ray will recover now, that he will walk and be able to come back home again. It is comforting to have the dreams I have stored dusted off and out on display again. Maybe...too early to say I know. But at least I have some hope in my heart again.
Funny how easy it is to tell someone you don't expect things to be perfect. "Of course" you say, smiling graciously, "I don't expect things to be perfect." What a dissembler I am. Of course I expect life to be perfect otherwise why am I even mentioning it?
Had a couple of not so good days. A friend let me down. It may have been a misunderstanding I suppose, as even face-to-face communications isn't always straight forward. She had asked our son to go and help with a BBQ at her place today. She told him she was having a few friends in. She had been up earlier in the week asking about how I prepare for a BBq, so he assumed and I did too that we were invited. We weren't. Luckily I went down this morning and asked what her plans were for the day intending to follow that up with an offer of help. She just told me she was a bit pushed for time as she was having a few friends around for a BBQ. I took the hint and left.
Now I could say "OH well, these things happen." but I guess these things happen a lot to stroke survivors and their caregivers. Former friends walk past without saying hello, you don't get included in outings any more, your Christmas card list dwindles. If it weren't for family and a handful of faithful friends we would all be very lonely. No more parties, no invitations to weddings, very few people calling around. I can see that having someone like Ray at a party can be a bit awkward, after all he does have some swallowing issues, and as we come as a package if he is excluded, I am excluded too. It is getting more isolating now, this stroke thing.
And another friend let me down too. She passed on something that I had said to her in confidence, and passed it on out of context. It is getting to the stage where it is harder to communicate with people. If you can't trust an old friend who can you trust? Sometimes I feel in winter that I just want to climb into a nice warm cave and do the bear thing, hibernate for the winter. Not being a kind friend, looking after my neighbours properties. I don't want to spend my days keeping up the gardening and the cooking and the cleaning, and looking after Ray's health and well-being. Sometimes I want to sit in the corner and sulk and think bad thoughts. The way I did as a child when something or someone annoyed me. Or sit and daydream in front of the fire with a warm cover around me, knowing that "someone" would give me a cup of steaming soup, a slice of fresh bread and butter. Where is the doorway back to those "golden years"?
Ray seemed tired and out of sorts today, did a few silly things, nearly took a couple of Panadeine tablets that Trevor left on the sideboard thinking that they were his tablets. I will have to be more vigilant now. And it is getting harder to relax as I AM being more vigilant now. It's a vicious circle isn't it? The dementia, I guess, is the cause of a lot of the confusion. I am hoping that is all it is.
I go to bed each night knowing that tomorrow will be another day and hopefully a good one. And some of them are, I have some lovely days. And so I don't get depressed when a few things go wrong. But some nights I do want to scream and cry wildly into the night like a banshee. And tonight is one of those. So just as well I was able to connect to a few folk in chat. Takes some of that lonely feeling away.
The birds are going mad today, lots of puddles to bathe in, green grass, plenty of worms near the surface so lots of birds out and about. Plenty of nest building too as I have seen the smaller birds flying around with dry grass or twigs in their beaks, and several of them are squabbling over a favourite tree for that, my paper bark tea tree out on the front footpath.We were given the weather forecast today of another wet day and low temp but Mother Nature mustn't have been listening as it is simply gorgeous out. It was nice up the back so I took some bromiliads and put them around the old tree stumps so that will brighten up that part of the yard.
I have been out gardening all morning. Current boarder next door John who is still waiting on a job placement after his last job with a government agency sunk out of sight at the end of June said he would clear down the side of the fence for about $100. There is a lot of herringbone fern there and a lot of fallen sticks from the big wind last year so it needs doing. He is ten years younger than I am so should get it done in a reasonable time. It all needs a good tidy up and maybe the metal roof sheeting will finally finish up out the front for the metal men to collect. That would be another plus.
When I was up the back I heard a scrunching noise on the edge of the cabin roof, I wonder if a pesky little possum has taken shelter under the eaves again? I still haven't had the last work done on the cabin, the roof is on but the ceiling was not replaced so I guess I had better start ringing around and getting some quotes again. I hate that part of getting a job done, getting quotes, waiting in for tradesmen that never give you a quote etc.
I think I am accepting that I need to make some changes now, not only to the house but to my life. I don't want to make any rushed decisions, I am mostly talking to other widows about what they have done. It is impossible to go back to the things I was doing when this all started and I don't think I would want to. I have had a lot of good experiences as well as bad ones and want to continue to have good experiences. I wish I had Ray here with me but almost two years out am less sentimental and more of a realist about my life experiences. I only have to read on here to remember the way things were. I am not looking at life now with a rosy glow but in a more realistic way.
It is wonderful to have the sun shining in a clear blue sky. It can be a sad and lonely neighbourhood when the winter wet season is in full swing. That is when I really miss Ray. Because of his many deficits he was always with me, inside in the warm, out on the verandah doing his exercises, sitting doing his old word search books (I found another in a drawer the other day). He was a lot of hard work but that filled up my days and sometimes my nights. I felt worth while in what I did. When I lost Ray I lost my "job" as well and I think that is a part of what I have been mourning for so long, that all seemed to be my purpose in life.
Even in the nursing home at the end of his life Ray was my companion. Going to visit him was my reason for getting out of bed, getting on with the housework etc so I could get out of here and be over at the nursing home by 11am to help him with his lunch. I still can not get past that feeling of wanting to have him here with me. There is still a lot of guilt about being the survivor of a couple. I don't know why but sometimes when I am out enjoying myself, particularly laughing I feel as if someone will come up to me and say: "Don't laugh so much you are a widow now."
I want to make new friends, I want to renovate the house and refurnish it to be "Sue's House". It will be two years since Ray died in a months time. And three years two months sine he went from the hospital to the nursing home. But this is the home we bought together 46 years ago, I look around and see his handiwork everywhere I look. It is the place we lived in, raised a family in, welcomed the grandchildren into. It is hard to think of it as just Sue's House now.
I don't mean this blog to be gloomy. Hard to be gloomy when there is such a honey of a day I can see it from here looking out across the back garden. That is what I mean about finding some balance, balancing my life with my expectations, realising that I can still dream dreams but cannot expect them to come true in the same way they did as I anticipated marriage, the birth of our babies and all the other good things that came into my life. Let's hope though that there are still plenty of good times ahead.
Ray and I joined the WAGS (Working Age Group for Stroke) in August 2006. Ray had already joined the weekly at that time discussion and lunch group for men called Scallywags and was enjoying the male company. When a man has a stroke and has to stay home with his partner he can really miss the kind of company he found by working so Ray really enjoyed meeting with the other Scallywags. I just enjoyed the time to myself as at that time I didn’t have carers coming in and Ray and I were together 24/7.
I’ve blogged a lot about WAGS over the years, the meetings, the personalities, the Women’s Weekends, the Carers Dinners and Lunches. The people of WAGS have been a big part of our lives. It has been our “real life” support group. Ray hasn’t been to Scallywags much this year. He has had so many things happen to him and although he can’t walk at all now his mobility has not been good all year. We have only been to a couple of meetings too and I haven’t been to any of the luncheons.
Despite our absence our friends there have not forgotten us and decided to nominate me for “Carer of the Year”, an award handed out at the Stroke Olympics held north of us at Newcastle each October. Ray and I have never been to one but the reports we have had back have been glowing as our caregivers and survivors come back with medals for scrabble, putting, darts, croquet and a dozen or more simple sports. Everyone says it is a great fun day.
On Wednesday night I got a call to say I had been awarded “Carer of the Year” for supporting other carers both locally and internationally through my work here on Strokenet. I was amazed and humbled as I am sure there were many people more worthy of the award than I am. So on Thursday the secretary of the WAGS group and her husband delivered a trophy, mine for a year and an inscribed glass plinth which I get to keep. I was really overcome by receiving it. It is not something you think about when you are a caregiver that some organization will award you for what you do out of love.
So it is down to the amazing people here that I got this award. Without your support and encouragement I doubt I would have been able to keep going looking after Ray for as long as I did. You all know how sterile life can become and how burnout hangs over us all like a little black cloud? Well the support of all of you allowed me on many occasions to ignore the cloud and wait for the sunshine to come out again.
I’ve told Ray about the award but I doubt he took the information in. Even the news that we are to become grandparents again in June seems not to have been stored. Trevor told him once and I’ve told him a few times but he still seems not to remember. I don’t think his memory works on much now. He is a dear soul, my soulmate, and I visit, sit with him in his room, in the common rooms and in the sun out in the courtyard. I read to him, help him have lunch, even help feed him when he seems too tired to hang onto the spoon or fork which is happening more and more now. But I know he will not even remember I have been there some days.
If I seem a bit sad these days, I am. It is taking a lot of time for me to reconcile myself to this parting of the ways, this separation due to illness. The finality of it is cruel. I am here sitting in front of my computer but he is not just in the next room gently snoring, he is miles away. After 43 years it is not death that has parted us but stroke damage and dementia. And of course I know I am not alone in this as I see the sad farewells in the nursing home every visit as one goes “home” and one stays behind to be taken care of by others.
Why did the last stroke take so much from Ray? Why didn’t he recover 80% of what he lost as he has with some of the others? Or is recovery of 80% less and less likely to happen? I try to keep optimistic, to keep praying and visualising him well but it doesn’t seem to be working this time. All I am asking is for him to be well, to survive this weekend without another seizure, to be able to hold a conversation, to give me a smile, much the same as I was wishing for Mum a few years ago. It seems such a little to ask.
But never fear acceptance will finally come as it has so many times before. With each change comes some challenges, a struggle to rationalise, an attempt to philosophise and in the end an acceptance of the new reality, the “new normal”. We all have to go through the process, survivors and caregivers, each of us fighting to keep back from the edge of depression and the black hole that will swallow us up.
I get by with a little help from my friends...as usual.
Ray and I went for our bus trip today with the WAGS (stroke support) group. It is the first time in fifteen months Ray and I have been on a bus trip and in a way this was a test run to see if going on a bus/coach for a day trip or for a few days break is possible. Well, from today's experience it is not an option any more. But then I should have known that as soon as we did the pick-ups and I realised I was the only caregiver pushing a wheelchair.
The trip went to a historic house the other side of Sydney. We had morning tea in the park where the Rivercats pull in for Sydney Olympic Park where the 2000 Olympic Games were held. It was a flat area suitable for all the disabled people but only two toilets so we more able bodied let those with an urgency problem go first. I made it back just in time to grab a cup of coffee. The people varied from a couple of ladies who hardly show they have had a stroke, by various degrees to Ray in his wheelchair, some came with a caregiver, daughter or friend and a few came alone, mostly they walked with a cane.
The historic house proved very difficult although as a concession to the disabled it had a ramp. The guide said to the bulk of the group: "You follow me." to me she said:"You go through there, down there, across there and up there and you will find a ramp at the back of the house." I did, after crossing half a cow pasture, a pebbled garden area, a rose garden and a long sloping lawn. Because of the recent rain it was all soft and muddy and required a great deal of effort to get through. A couple from the group held back to help me up the ramp but that was all.
We toured the house which was empty apart from a couple of furnished rooms. The guide then said:"Come on, follow me." to the group and to me she said:"Go back the way you came." Easier said than done when you are trying to push a wheelchair up a sodden cow pasture in drizzling rain. I finished up having to back up most of it. Just as I got near the top the bus driver saw me and came to help.
Of the rest of the trip we were able to do lunch, we did see the sheep shearing, but I declined to attempt another cross country drag to another paddock to see the sheep dog round up the sheep. Enough is enough. I could of course have left Ray up the top and gone down myself but that kind of defeats the purpose of getting him out for the day. The truth is that we can no longer do what we did even twelve months ago. Since Ray's fall, with his current weakness and lack of strength in his legs we have an added degree of difficulty. We not only can't keep up with the able bodied, we can't keep up with the moderately disabled either. My back is so sore from dragging him backwards that I will have to take pain relief tablets to go to sleep tonight.
All this is a bitter disappointment. I did think that by now Ray's injuries would be healed and we would be back to where we were, but that isn't so. I don't know why it shouldn't be so. He had a fall, he fractured his pelvis and hip joint, he did not have another stroke. The doctor says he is doing very well, the physio says the same. But he is still obviously nowhere near where he was mentally and physically to where this all happened in January. I need to find out why.
Ray is back in the main hospital for a couple of days while his arrhythmia is checked out. It may be nothing major but like arterial fibrillation it is known to throw clots and cause TIAs so they decided to look into it. He had a routine blood pressure and pulse check yesterday and he was way beyond normal. He was taken to the major hospital last night but put into emergency care for 24 hour observation only. If he has a further episode they will re-admit him but this time to coronary care.
Frankly this is very disappointing. He was coming home on Tuesday being declared as fit as they could make him. I am just about over all this and now something else happens. He does have these episodes at home though I always thought it something to do with his diabetes. He gets hot, complains about the heat (this can even be mid-winter) so I take some clothes off him, put the fan on him, give him a drink and within half an hour he is back to normal. Now it seems this is his heart racing and the arrhythmia not the diabetes. Well bless my soul, it's back to the Nurse Susie role again. Would I please buy a thermometer, would I consider a blood pressure machine? NO!!!!
So here I sit, waiting for the hospital to call and tell me what they have decided. I could go in and sit with him and get under everyone's feet but I don't know what good that would do. Last night Ray was in a constant twist, as soon as his heart monitor was connected he took one of the leads off, he said there was a funny beeping sound in his ears. Then he fought the oxygen, said they were trying to burn him up by putting hot air in his lungs. He finally was given something to eat and calmed down.
I think the dementia kicks in whenever he finds himself in a stressful situation and he starts reacting in the way a small confused child would. He reacts to me as if I am doing a lot of this. He doesn't see it as someone trying to help him. Usually if I talk softly to him for a while he will relax and calm down.
At last someone more senior than the trainee doctors in ER came along and laid out a plan of action. Yes, even more medication will fix the problem, and it is this one if it is this and that one if it is that. My mind said :"OH yeah?" in that cynical way long term caregivers have. The question never answered is :" And what will the long term effects of that drug do?". I don't want to learn to live with Ray vomiting, having more severe diarrhoea etc. Been there, done that. Ray is the compliant patient when the important doctor is around. Though he seems to have forgotten ever being hot now.
I came home late and felt like just diving into a deep dark hole. No, this is not depression. At dementia group we had a lecture on the difference between depression and sadness. I guess sadness kicked in because I saw the future again - Ray acting childish, more care issues, more problems, more tests, less time, less money less freedom. And if anyone is wondering as a full-time caregiver, YES, it IS all about me. How I cope determines where Ray spends the rest of his life.
So this is Saturday, end of week seven. And nothing much is sure any more. But with a bit of luck he is back to Woy Woy Rehab, still discharged on Tuesday. I can hope can't I?
Things are changing in our house again. Ray has gone from occassional incontinence to frequent incontinence in a matter of weeks. There has been no change of medication, no change of diet or illness to indicate why this has happened. I told the doctor what was happening and he rolled his eyes. He is reluctant to talk about these issues in front of Ray so I will have to make an appointment to go and see him by myself. That will be another way of "losing" my free time - using it to visit the doctor on his behalf.
I am a strong woman. I have been an independent, working woman, I have been a mother of three, a homemaker, decison maker, community worker, sometimes all at once. But now I feel as if I am slipping away from the community back into the home as Ray's conditions make more work for me looking after him and I get more and more tired and stressed.
Last night we went to our Lions Club dinner, there were the usual reports and a dilemma, our club had been offerd two barbecues to do on the one day. One of our older members stood up and harangued the meeting: "Look at you all, sitting here eating, where are you when there is work to do?...etc , etc. I know Ray and I can't do much now so I wonder if I should still be a part of an organisation I can no longer work and be active in? I'll pay our fees up to the end of the year and then make the decision and hand in our resignations. It is not something I want to do, it is something I have to do.
Ray has also begun to have vomitting attacks, nothing major so far, just coughing up the last meal, choking on something crumbly, things like that. Again no real reason, just not handling eating in the same way as before. This is exacerbated by the fact that he hoards food and eats it in the bedroom. This is mostly food he has pocketted from the sweets dishes at Daycare. This morning I found a coughed up chocolate bar under the bed in an old icecream container put there for emergencies. I am presuming he did that yesterday afternoon when he went in for his nap. Hiding food is one of the features of dementia.
While I was hosting chat this morning I heard a rattling in the kitchen and Ray was spilling a bottle of fizzy drink, luckily in the sink, as he was trying to fill a glass. It was a drink belonging to our son, not the diet drink which is always available for Ray. I am sure he knows the difference but maybe the dementia is clouding those issues too and the nearest bottle rather than the appropriate bottle is what he wants. He also took his night tablets at lunchtime instead of his lunchtime tablets which I had put on the table for him. He had the other container in in his pocket! My fault as I often keep them on top of a cabinet near the dining table, I guess I will find another place for them now.
This is not a litany of Ray's faults and failings, it is a list of the things that are altering and changing the way I will have to function in relationship to him. I will now have to go through his pockets on the night of the Daycare session so I can remove whatever he has brought home. I have tried asking them not to give out sweets as prizes for "Bingo" etc but they don't want to do that for the sake of the others who can still enjoy sugary treats. I understand that but it does make life harder for me. I hate rifling through his pockets, it is against all those "privacy issues" laws I was taught when I worked as a pubic servant.
Ray is taking up more of my time with doing laundry, cleaning etc. I am preparing foods more carefully and socialising, eating out, getting takeway etc seems less usual. I guess I would seem to be whingeing if I told my friends that going to an afternoon tea for a 90 year old is less fascinating and fulfilling than holidaying in Vanuatu or going on a Mediterranean cruise as they are? What did I do in a past life to be living the life I am now...I want to cry, scream, tear out my hair, cover myself with ashes. In other words I am once again mourning what might have been and not really enjoying life as I am living it now.
In the old Testament, the Jewish part of the Bible there are a lot of psalms which I read over and over all about how the Lord resues us from the trouble and strife of life. I hear on tv shows how people respond to a crisis by yelling: "God help me" and in their excitement at a piece of great news will say"Oh my G-d" over and over as a means of expressing surprise and gratitude. And yet in my times of crisis I just don't know who to call out to, feeling in a way it belittles the God I believe in to call on him in this way. Where is my protector, comforter etc? That was once Ray, the person I am usually cleaning up after or hauling up off the ground. I dare not call out: "Mother" as some do having in my mind the mindless little old woman I visit on Mondays and Fridays. It is pitiful to think of her as my helper.
For the caregiver there is often no-one to call on, no-one to come to her aid. It can be a very lonely existence.
The past few weeks since Ray has been back in hospital have been awful. It seemed as if each day I got some new bad news. This is wrong with Ray, that is wrong with Ray, his behaviour is worse, he is having hypos through the night, he seized one of the nurses by the arm and wouldn't let her go.
I can only take so much bad news in. In the end I wanted to say: "So deal with it!" Instead I took on the guilt of a mother with a child who is misbehaving at school. In the social worker's interview this week she remarked how much I had changed in the past six weeks. I guess the stress of it all has just ground me down. And that is why I knew that they are right and I will not be able to manage all of Ray's care needs now and he will have to go into full time care.
The interview on Monday was the most shattering as the social worker who likes to "tell it like it is" was fairly brutal in her assessment of Ray's mental capacity now. I wouldn't say she exaggerated but she did describe the bad days as if that is all there ever is or will be. I was devastated and cried and cried. I was alone as I had not expected to have that particular interview right away, Ray only having got back there on the Friday.
The past few days have been like walking though a fog. The road is familiar and you know if the fog would lift you would still see the landmarks but while the fog is there landmarks are invisible.
Our daughter came up by train and arrived at 8.45pm on Tuesday night. I was so glad to see her as I thought it would take a lot of the strain off Trevor and Edie. She and Trevor sat in on the interview on Thursday morning and because they had been forewarned by what I had told them about the interview on Monday they did both have tears running down their cheeks but agreed that they did want me to survive this and placed care was our only choice. If they had decided the other way I would have gone along with that but I know the amount of support I would have needed was beyond reason.
We then went together to look at a couple of nursing homes in the complex close to where I shop and behind where Mum is right now. The accommodation at one is like large rabbit hutches, each resident in a slice of a room with a shared bathroom, another had four beds in what is obviously a large room designed to take three beds. Another was okay, full of light, cheerful staff but the "extras" would take a lot of my money as well as Ray's to pay for, don't know how much I would have left to live on.
Now we have to wait and see what I can work out from our financial point of view, what is available and then make the decision. Of course there will be pressure for me to get on and make the decision as the hospital needs to "free up" the bed. And it is my decision. I cannot get Ray into the nursing home where Mum is as that is a three phase system, self-care ->hostel care -> nursing home so they always have a long, long waiting list. One of the others will have to do.
Will Ray's conditions improve? Some people do really well in assisted-living nursing homes. They love the fellowship, the fuss the staff make of them, the courtyard and the activities - whatever angst they have had they leave behind at home or in the hospital. Others grieve and pine and don't do well at all. Only time will tell what is to happen to Ray.
As for me, I will grieve and hopefully one day come back to whatever is a "new normal" for ex-caregivers.
It seems we have come to a new turn in the road. Ray had a serious seizure on Tuesday and fell off the shower chair. It took four women (no men available) to right him and get him onto the lifter as he was only semi-conscious and in an awkward position under the hand basin. One was very worried as it was her first "lift". He spent the rest of Tuesday and all of Wednesday in bed.
Then he had another attempted fall and possible seizure today and again in the bathroom but this time one of the carers held him up as she was directly in front of him and prevented him from falling. He has some bruising, both from the fall and from the "rescue". So, no more showers, it will be bed baths only from now on. Another step on the downward journey.
I was so full of hope on Sunday and am now back to having nightmares again. It seems as usual I can cope okay through the day but the nights trip me up. I wake up tired and today I dragged myself around, off to visit Mum, out to visit Ray, back to do some shopping. I felt as if I had lead in my boots.
Seems like how we celebrate his 70th birthday on Saturday will depend on whether he is confined to bed or not. I will have Shirley and co here from about 7pm Friday (tomorrow) night so they will help me assemble food etc. If it is fine we can still go outside. As long as he is either in the comfy chair, or the aides are willing for him to be in the comfy chair then we do not have a problem.
I planned to visit Mum early this morning. I knew she probably wouldn't be showered but felt it better to visit her in my time than have to wait. The facility opened on Sunday for Father's Day, closed for cleaning on Monday and is now fully open again. I felt so guilty when I found out it had been open, I rang Monday and then didn't check again till today.
Mum was still in bed, she was partly propped up and decidedly smelly! She didn't look uncomfortable though, just sat blinking her eyes and then going back to sleep. The carer who was doing a bed bath on the woman opposite talked to me as if he had not met me before. I heard all about his divorce. I should get a job there as a counselor! Seems he was not in favour of judges who award everything to "her".
All the carers I have encountered recently are complaining that the new workload is too heavy and they are not able to do the showering etc within the timeframe allowed. That is a real worry to me as haste makes for falls and falls lead to a lot of complications. I am waiting to see what happens to Mum and Ray but will be sure to complain if I think the treatment and care they are receiving is below standard now the staff hours have been reduced.
Mum was just as she was four weeks ago. As usual I have been worrying about her for nothing. It is hard not to worry. But all four ladies in her room were still much as I had seen them last. I visited with another old friend who is in the same facilty at hostel level and she said she had noticed a lot of people missing from the dining room so that section was affected by the virus too.
Beautiful sunny day today but the winds, warm though they were, almost blew us out of the courtyard so I had Ray wrapped up like a mummy. He mainly slept the day away today. I hope he does spark up again soon.
It is two weeks today since the funeral. My daughter and family are still here and go home tomorrow. Then the house will be quiet and empty and I will learn what it is like to cope with that for however long I need to. I still have that moment when I look at the clock mid-morning and say to myself: "Time to go and see Ray". It is like an automatic reflex and remains programmed into my brain. I still listen for his breathing in the night come to that and it has been well over a year since he has been here at home.
Spring is shudderingly cold most mornings still. Daylight Saving started at the weekend and so we have longer days but still cold nights. We will eventually get summer I know but half way through Spring I want it to be a lot warmer than it is. As part of the grandchildren visiting we have been on picnics and to the local beaches and seeing young children playing in the surf amazes me when the water temperature is still low but I guess we did it as kids too. The two here plus the other three grandkids played in the surf last week when Shirley and family went on a picnic with Pam and family of course they were only to paddle but managed to get wet all over and came out shivering but happy.
People have been so kind. I am still getting cards through the mail. Just on 200 people attended Ray's funeral and yet I get a couple of people each time I go to our local shooping centre come up and express their sorrow and tell me they would have come to the funeral if they had known sooner, if they had not had a medical appointment, not had to mind the grandkids that day (school holidays) or had something else pre-booked to do. I understand as I have been there too.
I am still sorting out paperwork, have found some documents and are still searching for others. It is an on-going task.
I visit Mum still twice a week, Shirley has been with me a few times, it is easier with two of us. She is mostly in bed and mostly asleep but we have had a few visits where she is out sitting in a chair and we have wheeled her outside. I often wonder what she sees, hears and experiences in the depths of dementia and with no ability to communicate. Her sightless eyes still turn towards us at the sound of our voices so maybe she is conscious of our presence, maybe not who we are.
A couple of people have been buried from the church since Ray died, it has been a busier year than most. The flowers off the coffin sit under the altar on the Sunday after a funeral, a reminder to the living. I have not had the energy to do anything in the church since Ray has gone. I will get back to it. I have to go to an old friend's funeral on Thursday. Death, like life, goes on.
Our Lions Club wants to do a tribute to Ray so I prepared some material for that. No-one knows him like I do. Isn't it sad? They were good to Ray so I want to do what is right. There seems so many little things to do. I have just posted off a few cards to friends afar, those who are not on the net and so have not heard. I remember I had to do a lot after Dad's passing, not so many this time as our friends are younger and more computer-savvy.
My friends are sometimes worried about what I will do and feel when the kids go home. It is back to one-day-at-a-time. I am telling them; "be prepared to be asked out to have a coffee". I have always got by with a little help from my friends. I know some relationships will change, I have that experience from the strokes, the illnesses, Ray's year in a nursing home etc. I know some people are avoiding me as they "don't know what to say". Really we all "don't know what to say".
I am remembering to breathe, weeding the roses, getting some time in the sun some days when it is not clouded over.
I know I will change. I think I will call myself: "The Widder Wilkinson".
I can't believe I had three phone calls today telling me why friends were not at Mum's funeral yesterday. Forget it friends, you were not there. But Mum was 94, had been out of circulation for twelve years and so I was not surprised that only fifty people came. Really only four of her friends, my church friends and mine and my sister's families were there. So today why do I need to know who was not there, well I know that already, and why? Just send a card folks, that is all you need to do.
The funeral went well, no-one made a fuss which was nice and most stayed to afternoon tea again done generously by the craft group ladies. I really do appreciate the effort they have made. It is hard to ask for them to do two funeral teas for the same family two months apart. But there they were smiling and pouring tea. I will join in with them again as soon as I am stable emotionally and will be there for others. The loving care from others does need to be paid forward.
There was a lot of tears from our family at the graveside and in the church. I think Trevor in particular was still crying for Ray. It is hard to face the reality of another loss after only two months, very hard indeed. I was so glad once again of the help of my dear daughter and her husband. I wrote the eulogy, Craig delivered it, Shirley did the prayers and the Bible reading. After all they are the professionals, but Shirley cried so much she had very red eyes and when she and Craig came to sing a duet at the end of the service ( they both have wonderful voices) Craig finished up singing the last verses alone with one arm around Shirley to hold her up.
My favourite nephew and his sister had written a short eulogy to give on behalf of the grandchildren and in the end they read it line by line as both were cyring, Ellie for the lost years, her brother because he had still seen her until I could no longer bring her home and wasn't able to visit her after that so he really was heartbroken at the loss. It is good she was so well loved, even by the grandchildren who I would have thought had forgotten about her. She was special to a lot of people.
The flowers on the coffin cover were yellow roses and deep blue irises. It was a magic choice and one she would have loved. As she was interred first, as Ray was, we found a lovely picture of her to put on the table in the church with the flowers. It was taken the day of my graduation with the Diploma of Theology in 1995 and I remember she told someone she was really proud of me. As Mum was never one to praise us that was very special to me. I think she was proud of both of us but rarely said it out loud, which is a pity as we all need praise. If you haven't told your kids lately how proud you are of them or how you love them please do so today.
Now I am looking for time to reflect on what has been happening during the past two months. I spent so much time with Mum that all else was neglected but now I will also have so much to do sorting out the two estates that that will leave me without much time to reflect anyway. Maybe I am just a person who needs to move forward without analysing things too much. Or maybe. like when Dad died I will suddenly find myself deluged by grief some months into the future when I am assuring myself I am over all that now.
My next door neighbour and my daughter in law (older son's wife) are back home from England, both with a lot of stories to tell. I was on the phone to my daughter in law for about two hours this morning hearing of her adventures. After a few days with her three children I am sure it will all fade away and seem just like a dream to her. But she will have the memories, the photos and some souvenirs to cling to. Ray and I did our trips to England in 1994 and 1998 and I still remember a fair bit about those trips.
It was good to be in caregiver chat this morning. The main theme of course this week was Debbie's wedding coming up on December 8th. Julie (the jule1) and I want to be cyber bridesmaids and Debbie is unsure whether my yellow dress will blend with her color choice of ivory and pink. Caregivers (well everyone really) are cordially invited to attend next week's chat and join the Caregiver Chat Bachelorette party. Bob is coming in a bow tie as an honourary bachelorette of course, the more the merrier. Wine punch with strawberries will be served in honour of my English heritage!
Words of songs keep flashing through my head. When I think of Debbie and Bruce I think of the song which has the words: "There may be trouble ahead but while there's music and dancing and love and romance, let's face the music and dance".(Lyrics by Darius Danesh).
We all know that life isn't lived in a vacuum and one thing bad happening to you doesn't mean that another bad thing isn't just over the horizon just waiting to roll down on you but I am a firm believer in hope. Hope has never let me down. Whatever the trouble, whatever the struggle, however low it brings you, in the end we will turn the experience into something worth while, a new skill, a life lesson or a story to tell others. Thankfully all that has happened in the past two months will do that too.
I have finally ( I think) found a more peaceful place. I went to the old support group at Mum's nursing home and spoke about beng a widow and did not cry. I think that is progress. I think going to the grief counselling has really helped. I can now articulate what I feel and not get choked up. It was good to experience that today. One dear lady whose husband died about the same time as Ray still sits with a handkerchief to her face and cries for the hour. She is older and is lost without him. Her family want her to sell her house and move closer to them and she is so sad about that, but feels she has to do what they want her to in order to get their support.
I am finding it easier to take whatever invitations come my way so I have had a few meals out lately, mainly lunches out with other widows of which there are plenty in my church. This has given me the means of forming a new friendship base. I don't think it is a sign that my life is improving so much as it is a sign I am getting stronger, more able to cope. I am crying less and less things seem to trigger the tears now thank goodness.
I think the grief counselling is helping me to sort my life out more easily also. I can "see" something plainer when someone else puts it into words for me. On my own it is very easy for me to get stuck on one particular item and not move on. And I think this stage of my grief is about slowly edging forward. The direction is still hazy. I know there are still many things I would like to do. I should maybe write a list, put it somewhere safe and look at it in six months time when I might be strong enough to start setting goals.
I am starting to claim back my place in the house. Ray left from here in June 2011 to go into hospital, came home for a day in August 2011, fell down, I called the ambulance and after a lengthy examination he was taken back into hospital and some weeks later transferred into a nursing home. He died on 19th September 2012. That means I have been on my own here coming up for two years in June so it is not just six months ago as it would have been had he been home here when he died. I still miss Ray terribly but I am not so wishing for our life together to continue, certainly not the way it was in the last few months of his life.
It is hard to make changes. I go shopping for new curtains and come back empty handed. I do not really want to make changes, this is "our home". It is the house that Ray built onto three times. Our children were not raised here as we were away in the country for 10 1/2 years but this is the house we extended to fit in three teenagers. This is the place they went from when they got married. It is special to me. The furniture was adapted to suit Ray, so he could come home in a wheelchair. The furniture was moved to accommodate the wheelchair so I guess I could decide whether I want to make some changes to the way things are arranged. But basically I love this place which was home to Ray and Sue and the kids.
Some days I still feel sad, abandoned and bereft, that is inevitable. I know life as I had known it for more than 44 years ended when Ray died. But some days I feel more energised than I have for a while and that is a good thing. I just have to try and look for the positives in life. I have to somehow make sense of those 44 years, remember the good times, downplay the bad times. I need to get some perspective on what being "Sue alone" means. I have become a member of a site for widow and widowers and that is helping. I know that when I feel..... that is normal at this stage of my bereavement. It has taken a while to get to this point though.
It was six months yesterday since Ray died, four months today since Mum died. I have only just come to the realisation, six months out, that the past cannot dictate the future. I cannot live in the past, it is gone. I love my husband and always will but to sit here saying I cannot do a thing because Ray would not like it is ludicrous. If I don't do it and do say it is because I don't want to then that is more honest and I need to say that.
There are some great people on here and I will be staying for a while longer but one day it will be time to move on. As you all know I love the Blog Community and have learned so much from you all. Sometimes I need to read through the blog a few times to see all it has to offer. I love Asha's blog and the blogs of the caregivers who meet in chat and have become such a big part of my world. I really wish I knew how to let everyone know what a wonderful relief it is to chat to someone who REALLY understands what you are talking about and yes, can tell them all the facts, pleasant and gross, without them leaving the room.
You are all a part of the best site on the web, no false modesty needed, Strokenet rocks! It has helped me so much to make sense of my world pre-stroke, during the stroke journey and now that that journey is completed. It is good that others can have imput into our lives, that strengthens us. But ultimately we have to live it out ourselves and that can be lonely.
This afternoon I went to the Lymphoedema Clinic for the first time, I was anticipating getting some of my most pressing questions answered. I had done what everyone does, gone to Dr Google for my answers about the relationship between lymph node dissection and lymphoedema. Most of what I found related to breast cancer but that is understandable as the breast cancer girls pioneered the use of lymph node surgery. I am very grateful for that and the surgeons who pioneered the treatment.
The girl who I saw put me through the usual paperwork, I am getting used to it now, taking them step by step through the discovery, diagnosis, surgery, recovery etc. Then there was examining the wound site, taking the measurements of both legs etc. Then she asked me could she call a colleague in and the colleague explained that I would have a new pressure stocking, measurements would be taken six monthly and on and on. I was a bit puzzled as the surgeon had said I would have the stocking at least until the end of October, so I mentioned this. The colleague laughed and said : " I don't think so, this is forever." And I burst into tears.
The girl who had asked me the questions was dismayed and tried to calm me down. I'm sure they thought I knew this was a possibility. But I didn't. I assumed the condition would settle down and I would only be wearing the stocking for long distance traveling once October ended. I guess it is like any diagnosis, I found it af bit hard to swallow. Initially it was devastating. I thought it was a case of accepting the changes, having some physio and then a new life with a new normal. Silly me.
When the colleague has gone back to her room the original nurse Connie explained that certain factors like getting overheated, stressed, tiredness and overuse of the affected leg can cause the lymphoedema to spread. So it was safer to continue to wear a pressure stocking. Dr Google didn't tell me that. So I now have to get used to the idea of having this condition forever. I can still take the stocking off for short periods of time, wear gym pants which will apply some pressure for swimming, walking on the beach with my grandchildren etc but a lot of normal summer pursuits will have to be carefully monitored because of the possibility of overheating.
I know a lot of my friends will pat me and say "never mind" but I do mind. It is another body blow, another little death, the death of summer dreams. Just the thought of finding some place to change in and out of a pressure stocking near a beach kind of denies being able to do anything without prior planning. "I'll just be five minutes, well closer to an hour I'm afraid." Nothing spontaneous about that is there? Okay, I know that is the case for a lot of stroke survivors so I am lucky, but I need time to get used to the idea.
And that kind of sums up the last couple of decades, changes that I have had to get used to. And eventually I do. But not without a fight usually. Sorry as I am about my inability to adapt to every new situation. Maybe body image is still one of the issues, I want to look and feel as good as I can for my age and circumstances. I guess we all do. I know some people are able to relate to this and others will find it difficult. After all I still have the use of both my legs.
How long is forever? Nurse Connie said it is like today, tomorrow, the next day and the day after that, if I can think of it that way it won't be so hard. Perhaps the survivors will understand that. I can in a way. I did a lot of that when I was a full time caregiver for Ray just looking a few days ahead, not too long ahead or I couldn't adapt to the sudden changes. And we all know how suddenly life can change. Hopefully this won't be the case for me. Until the next set of tests I can pretend nothing else is going to happen can't I?
Today Ray stood up for the first time in eleven days. He still can't take steps, the physio tried but he sagged at the knees and the physio called the nurse to pull the chair forward as he was holding all of Ray's weight on the gait belt. It was sad to see that despite a pain tablet half an hour before Ray was still in a great deal of pain. Even just standing up he was doing what he himself calls:"Waving in the wind."
The orthopedic team, apparently four of them, decided that the hip socket fracture was only minor, the hip was fit for weight-bearing and the rehabilitation, that is the physiotherapy should be started. I am all in favour of that as Ray had been laying down most days and sitting in the chair for brief periods other days.
There is still some uncertainty about where he will go from the hospital when he is no longer regarded as acute care. The choices are two smaller hospitals, mostly used for convalescence or for nursing home patients awaiting placement. They do have some physio and that is good but it is not an intentional program, just to keep people on their feet. I am worried that will not address all of Ray's stroke related issues and return him to full fitness again. That is what he needs to come back home to live.
Ray was inspired by his stand-up and after the physio had shown him some sitting down exercises he could do to strengthen his now very weak muscles he started them on his own. Not the way the physio had shown him but in his own way. Ray always finds a way of doing things, this meant he seized the bad knee with the good hand with a grip on the band holding the AFO on and moved the leg up and down this way. I guess at least he felt as if he was doing something.
He is also refusing the cookies that the good natured catering department leaves at every bedside. It is not shown now that a person is a diabetic ( breach of privacy?) so they leave them for everyone. This and getting dessert at two meals a day has been shooting his sugar readings sky high so I am glad he has made this decision himself. At least at hospital I don't have to be the "food police".
It seems there are decisions to be made every step of the way in this recovery process. Today I have to decide who to ring with updated information. It is okay here and on my email list as a post, blog or email will solve the problem. But then there are the many friends and relatives on phone only that I have to sit down and ring. I think I will ring a few people every night rather than tackle them all at once. I am hoping the news will improve as we go along.
For a while now I have been trying to make some changes in my life. One of them is to calm life down. Now I can be a bit of a drama queen (hey! I am a woman!) and I know that stress is not good for me and worse for Ray so I am trying to de-stress us both. As Ray ages he certainly appreciates the quiet life. And if he is stressed the result shows up in his sugar readings, they sky rocket, so it is in his interest too that we live a quieter life.
This resulted in me having a very quiet birthday. But it was good because that was my choice.
I wondered how to make the day special and came up with a plan. I sent Ray off to Daycare as usual. Then I went down to our small shopping village and bought two large iced and filled cakes. I took them down to Mum's Dementia lodge and had them cut up for morning tea. That way I shared them with Mum and all her companions. And it was worth it to see how much they all appreciated the cream and jam filled treats! The expressions on the faces as they licked their lips was amazing! It is so much better to give than to receive when you can receive so much from giving!
The rest of the day was the usual shopping and I visited a girlfriend for the last hour before Ray came home. I did have a lot of greetings on the phone and by email (thank you, thank you) and a few cards in my letter box so it was a good day. And a friend who used to be a florist left a beautifully boxed flower arrangement on my doorstep!
I finished the day by taking Ray out to dinner. I have posted a new caregiver's hint too as I have found a way of making dining out easier for Ray. It is hard when he has so many issues to enjoy a meal out. BUT we have actually had three meals out recently and all have gone well.
We had Steve and Pam and the two little ones over on Sunday night and just had takeout (Asha's suggestion) and so not a lot of tidying up afterwards. Alex's new party trick is to stand and smile. He actually stood for over a minute at one stage so it will not be long before he is walking now. Which is good as Pam is expecting the next baby mid-August. He is a beautiful boy now, big cheeky grin and a little gurgly laugh. Tori is a great BIG SISTER and plays with him nicely when asked to do so. She is still Granma's best girl too.
We are going out to craft this afternoon and Lions Club dinner tonight so I should get some more greetings, then our next door neighbour is taking us out to coffee after I finish here with you all on chat so the blessings continue. It is good to have friends, in real time and in cyberspace and I do give thanks for all of you.
Thanks to all who sent me greetings and personal messages. You are the BEST!