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we are going through a difficult time

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swilkinson

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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.

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Sue,

 

Dan has always required total assistance. You ask how we do it. The answer is I don't really know how I do it, I just do. I had hoped that after we moved we would just pick up where we were before the move only better. Showering in the roll in shower instead of bed baths every day, getting in and out of the van without having to put a ramp to the curb, plus other things. Apparently my plans were not what God had planned for us, at least not yet. There are no simple answers.

 

Dan can't stand on his own so we use a shower transfer chair when in the tub. Transferring someone who cannot stand isn't really difficult, but it can be strenuous and hurt your back if done incorrectly. Dan is transferred using a gait belt. Before this last illness he was able to help a lot, he was min to guard assist. He didn't really stand and pivot, he used his good arm to pull himself into the wheelchair. He needs to get back to at least a mod assist before I can bring him home. I'm just too old and too tired to lift him like I did when he first came home. I think I've aged 10 years since Dan's stroke two years ago.

 

I do worry about you and I'm sorry for what you're going through right now. Please take care of yourself.

 

You and Ray are in my thoughts and prayers while you figure this out and plan what needs to be done. Lots of hugs are sent your way.

 

MJ

 

(((((hugs))))) (((((hugs))))) (((((hugs))))) (((((hugs)))))

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Sue,

 

I'm sorry that things are on the downhill slant again for you. Like Mary Jo, I also have had to do all the lifting and transferring with Gary from the day he came home from rehab seven years ago. He has never been able to stand alone for even a second.

 

I found the roll-in chair for the roll-in shower works very well. We have a grab bar in the bathroom where I park him in his power chair. He grabs hold with the good hand, I help raise him up and get him to swing his affected leg forward (without putting weight on it so he doesn't break an ankle), and then sit him back onto the rolling chair. There's still that little rubber seal that I have to lift the chair to pull it over but much easier than trying to transfer him to a shower bench.

 

In some ways, I feel lucky that Gary has never been able to walk or stand on his own since the stroke, as I learned from the beginning how to hold him up to pull up his britches, or transfer him and we have had very few falls and when we do have a fall, I'm always there to lower him gently to the floor when I can't hold his full weight, so no major injuries from the falls. I'm not saying it's an easy thing to do - after many years, it takes it's toll on your back. I do know that having the power wheelchair helps make things easier for me in the long run - transferring to a more solid wheelchair is sooooooooo much safer than the manual wheelchairs, when the patient has poor balance or motor control.

 

You will figure out what works best for both of you with the new challenges from this latest fall, and we are all here to support you in your decisions.

 

Sarah

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At some point Sue, you'll have to know/feel when one door closes another one opens! Otherwise you'll feel like a yo-yo for all the years you've been care giving to dad, mom and Ray! With the added help from people coming to help you care for Ray, a solution can be reached I think!

 

 

I say that based on me being a survivor saying what do I do to make things easier for my wife and what can I do to make this stroke life and recovery better and easier for us both? Hope I didn't miss the main point but times are and will be difficult most of the time when one is recovering from anything especially a stroke in my opinion! I'm always saying, "Why me?"

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Sue:

 

I am so sorry to hear that you ar again going through this difficult time in your life, one sometimes wonder why you or any of us. I pray for strength & lot of help to get through this new hurdle in your life. I am Sure Ray might be very unhappy about this too. you both are in my thoughts and prayers for speedy recovery & good workable solution.

 

Asha

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Wow Sue, this sounds like another big bump in the ride. It is always very overwhelming when our hubbies lose a bit more ability. I went through this with Dick. For the first year post stroke he could not stand. Then for a few years he was able to walk on his own. He is moving more and more to full-time use of a wheelchair now. The second time around is much more difficult because my back has been hurt so badly. Now it seems that he has difficulty following even the simplest of instructions. It hits hard in just so many ways to watch this slow decline. I wish I had great words of comfort and wisdom but all I can say is that I do understand and I also know that you are always stronger than you think.

Ruth

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Sue,

I hope you get things worked out and a nice smooth stretch in the bumpy ride you're on. You and other caregivers here amaze and humble me so much as I read the 'other side' of stroke.

In appreciation,

Lisa

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Sue: this is a major set back. Just by what you are describing, I think that alone diagnoses another stroke. He does not remember how to stand-again, the retraining begins and one has to think, can he do it? My money is on Ray, however it is NOT on you. At 50 this is do-able, not so much at 60.

 

Yes simplify. Your winter is going to be spent at home while you research and set up programs that accomodate a total-care, WC bound person.

 

First thing is the bathroom, have Trev figure out how to put a drain in the floor, so that you can shower Ray in the WC, bottom can be done while still in bed. If you physically can not transfer safely from bed to WC and back, time to bring in the lift. He can sit on the lift sling all day, so you can go back and forth to the bed or recliner safely. Gait belt, yes. If you can talk him through a stand and pivot safely, keep working on it.

Your days are back to square one and with the dementia, only you will be able to decide it he can get it. In the early days with Bruce, it was out of bed with the lift once, for a few hours either to WC or recliner, then back in bed. Rest is what Ray needs. The tremors are over toning=a thread you have read about here. Bruce can finally calm his down, but is still on meds to help and they zonk him. From what Bruce tells me they are not painful, just a pain in the neck or other places-lol!

 

Go slow, slow down your days: get through dressing, toileting and meals. Maybe some time on the patio if weather permits. This is so hard for you and so disheartening. But if you are determined to keep him in his home, work on extra help and simplifing. Prayers your way always, Debbie

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Dear Sue: I am so sorry to hear of the downward slide with Ray. I don't know how you do it except taking one day at a time adds up to years. My husband had to give me total aided care when I first came home. I am not pretty independent and this has lifted a burden from his mind and body. Dealing with dementia may be the hardest of all because he can't follow instructions or directions. My mother had

Alzheimer's and is was sad watching the slow decline in her mental and physical abilities. I can identify with how lonely and depleted you must feel. As a stroke survivor, God is my refuge, and I think it is for caregivers also. Only He knows what can be done and you have done so much for so long. A friend of mine took care of her stroke survivor husband for almost 14 years. She had people come in twice a week for respite for her. I was there one day to help put him in the sling to transfer to wheelchair and it was only then that I realized what courage and strength my friend had. I asked her how she could do it for so long. She said if someone would have told her what was going to happen she would have said "I can't do that". She said it's amazing what you can do with God's help. I will pray for both you and Ray. I hope you can get some additional hands-on help for both of you. The "powers that be" whereever we live do not have much empathy for the caregivers or else the budgets would be bigger for aid. One thing I learned with my mom was that with dementia she didn't know how bad she was; it was like floating. Now she is "home" and I am know she is at peace. A big hug goes out to you, Leah

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Sue,

It is good to see you blogging about this. it will help you work it out in your mind.

Things will change and you will modify your schedule.

Change is our new normal.

Take care I will pray for you and Ray.

 

Ruth

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I have a note on my mirror that says you are stronger then you know, I read it everyday. I hope that it helps you too as you are one of the strongest people that I know. You will find your way like you have done in the past.Lots of love and hugs :hug: and prayers are coming your way. Take care and rest when you can. Sally

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sue, i can't add much,to what the others have said. from a survivors point of view, i don't know how you maintain all you do each and every day. then having another hurdle to get over. its so unfair that you can't get the help you need. i send lots of prayers to you both along with love and hugs. i know you will get this all figured out, like you always do. can any of the these functions that ray is involved with have someone you can call on for help? falls are so dangerous for the both of you.

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Sue: I can't offer any advice than what has already been said. Just want to say how sorry I am. My love and prayers.

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Sue, I'm a little behind in my reading the blogs. I am so sorry to hear of Ray's set-back. remembertolaugh, Jeannie :cocktail:

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Sue

 

So sorry to hear about Ray. Try to take care of yourself spiritually and physically. Be well sharonGrace

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Sue,

I am so sorry to hear about Ray. I haven't been here for a few weeks and feel so bad that you are going thru another setback. You both are in my prayers daily.

Please remember to take care of yourself, too.

Sheila

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