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where is my peace of mind?

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swilkinson

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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.

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Sue,

 

I can only offer (((((((((((((hugs))))))))))))))), and tell you that I hear you!!!

 

Sarah

 

 

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Sue,

 

Dementia is a cruel and progressive brain disease. That makes it very hard for the caregiver not to have bouts of mourning the past and what could have been in the future. I know you've been there, done that and you seem to be doing it again. Hang in there. You know you can move past this again to find the acceptance you need to go on. Maybe to go on this time, you need to get more outside help, if available. Someone to help with the laundry, cleaning and yard work to free you up for the more hands-on time to care for Ray.

 

I was just reading an article on this topic yesterday where they made caregiver suggestions for dealing with the emotional side of dementia caregiving. Some of the suggestions are almost laughable if they didn't make you want to sit down and cry. The first one was give voice to your secret longings and the second one was define your realty. Well, no one could say you haven't already done both of those in spades. The next ones were about mourning your lost dreams as a couple and creating new dreams as an individual. I know you've done the first and you probably can't conceive of doing the later. I know I had a hard time thinking about the future when I share-cared for my dad who had dementia. I loved him so much I didn't want a future that didn't include him in my life. But we both know that is unrealistic to think there will not come a day when the caregiver role will no longer be needed. So maybe that has got to be your salvation, to start thinking in the back of your mind about what you want for yourself once you've fulfilled your caregiver role. There are travel clubs for women, lots of activities and groups that someday you'll be able to join again. The point is mourn your past dreams and your present circumstances but leave room to grow some new dreams for yourself.

 

By the way, if I remember right you and Ray have given a great deal of time to the Lion's club over the years. Don't let that one man's speech drive you out when you know in your heart you've earned the right to be on the receiving end of their good work for now.

 

Jean

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Sue:

 

I don't have any great wisdom words after what Jean told you, instead I want to offer you lots of hugs and remind you. this shall change too. nothing is going to be forever. I agree with Jean about Lion's club, it wasn't intented for you.

 

Asha

 

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Justsurviving,

 

Thanks for the deep belly laugh. I had totally missed that typo and read it like Sue meant it to read.

 

It makes the laugh even greater to read the typo in context to Sue's sentence of: "I hate rifling through his pockets, it is against all those 'privacy issues' laws I was taught when I worked as a pubic servant."

 

Hey, Sue, I hope you're laughing with us.

 

Jean

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hey sue:

 

even I am laughing hard though I did not notice it firt time so it's sherry to blame :D

Asha

 

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Hi Sue,

 

Now that you have stopped laughing, I have another suggestion. You shouldn't have to ask, but could your son do a little more for you. I know he has his own life, but you need help right now.

 

Also, instead of reading Psalms, try reading John in the New Testament. It is so uplifting.

 

My prayers and thoughts are with you.

 

Vi

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Sue,

 

I as well missed your typo until Sherry and Jean replied to it and brought it to our attention lol.

 

I have no solutions for you either sweetie - sending (((hugs))) and oodles of love your way. I will say this though, our God might not be into mind reading, vocally ask for his help or through prayer, whiich I'm sure you already do. Makes me think as well of the words to a song I hear all the time on the radio - Garth Brook's "Unanswered Prayers" - http://youtube.com/watch?v=6yhKuIZIdz0

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I missed the typo also.... but I once read.. if the first and last letter of a word are correct.. we wll read the right word into the sentence. (good thing as I am dyslexic since the atroke.. and often hit add or post and forget spell check)

 

Well I CANNOT picture you doing this but when something happens... you could always let out a good cuss word (LOL....)

 

And I'm with Jean on the Lion's club... don't let that "jerk" scare you out of there... You have done plenty.. and those are your friends and outings.. NOT every one can give the same thing, but maaybe you can be on the idea and "planning" side ... let the young ones do the physical parts.

 

Sorry but as humans we don't always have the patience of saints... and Iam sure I have less snce the stroke. I get frustrated, as I am clumsy, I get tired as I get older.

 

I know hw Thankful you are for the years, children and happines you had with Ray.. and it Reality it SUCKS.. when you see other couples.. taking vacations , and doing things you wanted. How..Why do some people get the little wand with spakles and other get.... well you know what end of the stick???

 

wish you rainbows and soft gentle rain, a sun filled with happiness and hope.. you are a dear lady.. and you are loyal, honest and honerable.. Your light shines for those that know you... and love you.

 

And it is ok to whine , get on the pity pot yeah we know.. we have to get of and flush... because there is something around the corner that needs your attention.

 

But it is OK go someplace where you can scream and yell and let it out...

 

sneding hugs, and my shoulder and sure wish we could share a cuppa...... Bonnie

 

 

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hi sue,

i was very sorry to read about ray's increasing problems and health issues. i think it is pretty normal to wonder at times what we did to create the situation we are in. if only there was a reason....but fate is indifferent to our human desires......what happens , in my opinion, happens...no special reason. i think it is perfectly okay to complain and whine sometimes....you have a over flowing plate. mourning the loss of what was or could/should be is something we all do at times....after all we are just human.. i hope you can find some additional help and in some small way find a way to care for your own needs. sending hugs....kathy

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