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cold, colder, coldest


swilkinson

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Well, winter took it's time coming this year and we were all congratulating ourselves on another mild winter. But now the winds are blowing steadily from the south and the snow is falling on the Snowy Mountains and the Australian Alps and winter is well and truly here. Here I sit at my computer at the back of our house and it feels as if there is an inside frost. We only heat the front "living area" so it is quite cold here and I sit late at night wrapped up in a rug looking like a rainbow and feeling like a rabbit but at least I don't get too cold.

 

The days are cold too and windy as well. Ray and I have had several good days and it has seemed much better than last week when we had some bad ones. He has had three mornings in a row when he has been continent and so my early morning moods have been much better and my temper much sweeter. I wish I could come to terms with the incontinence and it would feel "okay" to be down on my knees scrubbing carpets and floors. I don't know what makes that clean-up seems so bad. I have to find a way of changing the way I view it so I can be at peace with it. I know others here are able to do it and keep their sense of humour so I should be able to also.

 

I have been reading on a few dementia sites as they seem to have a lot of information on the behavioural problems we face from time to time. I am glad Ray is not capable of violence at the level some survivors and dementia sufferers seem to exhibit. If he says cuss words it is mostly under his breath and he doesn't often yell at me. I know when he does it is out of frustration and that saying: " you always hurt the one you love" is often used as a justification, but I don't like that side of the disease. We all know how much more we can achieve in life if the person we are working with or alongside is co-operative, friendly and helpful and the same applies in marriage. I don't think I could stand it if Ray was constantly yelling abuse. I would just want to get as far away from him as possible.

 

We have been quite sociable this week. Yesterday we visited a cousin of Ray's and had lunch with her. Her husband was at a meeting and when he came home seemed a little uncomfortable at first. But he is a storyteller and was soon remembering some of the good times we had shared and re-iterating that part of our history and Ray seemed to enjoy that very much. Ray even added a bit of extra information to one of the stories which surprised me. I guess with some prompting he could probably remember more information. It is partly that kind of response we all have when we see an old classmate or workmate and do that reminescing that mainly involves remembering a conbination of a specific time, place and action. I am always glad when someone takes time to involve Ray in a conversation.

 

Today we had other old friends call in. I had left a voice message for them about the anniversary party so they dropped in this morning bringing photos of their grandson and some other family photos to share with us. I have known both these people since before I was married so it is good to rekindle some of those warm memories. I know people are busy living their own lives, I know they have parents and children and grandchildren to take care of and worry about but I am glad and grateful when they can share some time with us.

 

I have just extended the invitation to our party to the members of the Stroke group WAGS that we belong to. I initially invited two members and their husbands. One asked me if I had extended the invitation to the whole group so I thought "why not?" after all they are like us and probably don't get as many invitations to go out as they used to. It means making more sandwiches and buying more soft drinks maybe but a dozen or so more will not make a huge difference, and as some of the people I expected would come have already tendered their apologies I think the others may take their place. And what is wrong with that?

 

This is a lot like our wedding. Ray and I each had a packet of invitations to invite our side of the family. Unbeknown to my parents and I Ray bought a second packet and continued to write invitations to more and more distant cousins. That explains why we were to invite 100 people and had 130 accept our kind invitation! Luckily it was a buffet meal and that tends to stretch much further than a formal sit-down dinner would have done. Now we are inviting some of those who were at our wedding to join us again and have added some more recent acquaintances too. A good way to move forward into the future for us as a couple. 40 years, that is a loooong time to be married eh?

 

Tomorrow is my "day off", a minder in the morning, Scallywags in the afternoon for Ray. It is also the day my friend gets her final verdict on her cancer diagnosis and then next week she gets the suggestions of treatment for her to make the final decisions about. I went to see her early on this morning. We had a few laughs, maybe because at this stage she needs to see the funny side of life, to balance out the lost, lonely feelings she has as she faces this new challenge in her life.

 

Life is such a mixture of happy and sad, good and bad, isn't it?

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Sue:

 

life is wonderful when you take it on the face value with lot of attachment to end result. I know I found great side to me which often friends and family pinpoint as a bad side. but I know by not planning for every minute detail in my life, life is more enjoyable. I am glad you are having great time with friends and family. 40 years is great celebration.

lots of love

Asha

 

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Sue,

 

I've always thought that caregivers to people with multi-strokes would benefit from the dementia support sites more than stroke sites. It doesn't matter what the cause of the dementia is, the problems that all dementia caregivers deal with basically follow similar themes. Caregivers that deal one stroke are in the rehab/improvement mode---or at least they should be---rather than being in the mode of trying to hold on to what is still there, knowing eventually the battle will be lost.

 

Dealing with incontinence that will never get better IS different than dealing with incontinence in a baby or puppy that can get trained or in a new stroke survivor who can evidentially be retrained. It's a constant reminder that your relationship has changed and that's a hard reality to accept.

 

My brother deals with the violent rages of early Alzheimer's and did so at home for a couple of years. First my SIL went to a nursing home where they couldn't handle her either. Then she spent time in a mental hospital to try to get medications to help before going to a lock-down Alzheimer's nursing home. I personally don't think anyone could care for an ill, violent person for very long without themselves suffering from major depression, etc. My brother goes every day to see his wife and make sure she eats. He can still handle better than anyone else. I see the toll this is taking on him.

 

Recently I read something where someone had asked why they continued to visit their Alzheimer's spouse who didn't remember them anymore and the person replied, "Because I still remember her." That pretty much sums up why we caring caregiver/spouses do what we have to do, doesn't it. We do it out of memory and respect for what once was. We do it because we have no real choice but to find acceptance for our changing status if we want to remind sane, and we hope that the example we set will one day be returned to us in our time of need.

 

Your party sounds like it's shaping up really nice. It will be worth the effort no matter how long or short the guest list turns out.

 

Jean

 

 

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Sue,

 

Ain't it funny how we are so close in cyberspace (computers) yet so far apart that when you got winter we got summer and very HOT temperatures? That's why so many in New York and other northern states pack up and head south to Florida for the winter and to Arizona for the sinus suffers. I still really want to come back to your country and bring this wife so she can see the real "Out Back" and it's aboriginal (Sp) people I showed her pictures of me with them enjoying my R&R from Vietnam in 1971.

 

We really want to visit you and Ray plus any others in your area on Stroke Net. Still waiting on my Lottery winnings!

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