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I don't pray for patience.


arogers

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If you have read Sue's blogs and my blogs you no doubt have noticed the comparisons I make between her Ray and my Bill. Their conditions really do parallel one another so if I write about a particular challenge, you can bet Sue has been experiencing it as well - or will in the future.

 

In the past Bill has experienced very obvious and sudden steps down in his mental and physical health. The changes seem to be more subtle now. He has always been fastidious about himself, but now is less interested in showering and shaving. These activities now require my prompting and of course, my assistance. He struggles with his cane. He is very slow when he walks and the cane seems to confuse him. He does better at times just holding my hand - even though I know the physical therapists would have a heart attack if they saw him!

 

I'm finding it more necessary to have my weekly three hour reprieve. He decided last week he was going to rebel at caregiver time. Wednesday he slept a lot during the day and when night came he was up and down. I doubt I ever went into a deep sleep. He's begun wanting to nap in the evening when I can't sleep yet. Then when I can settle down he awakens and wants a snack. And he wants to snack and on and on.....I've had to tell him NO because his sugar has been so out of control. He falls asleep right away, I'm not even sure he's awake when he wants food The scene is repeated about every hour until three, then he's out till morning.

 

Thursday he knew his care partner was scheduled to come so he ignored me when I was attempting to get him up and ready. I finally resorted to bullying to get him up and going. I hate that. When my kids were little I didn't view it as bullying, I viewed it as directing, correcting bad habits....it's just different when it's my husband, the love of my life and the one who I don't want to disappear. I don't pray for patience.....I pray for grace to accept this path we walk because I really don't want the lessons necessary to develop patience. All I really want is to go through this experience lovingly.

 

Right now I'm feeling the sadness associated with the loss I'm feeling. I know it's the five stages of grief. I still need to walk through it and I don't like it very much. I haven't ever asked "why me" simply because I don't feel I was singled out for punishment - I think that's what most feel when they ask that question. The other part of it is that Bill had ALL the habits that lead to stroke vulnerability as far as lifestyle goes. He had diabetes, high blood pressure, heart disease plus a history of stroke in his family. He was also a heavy smoker until the night he had his third stroke. So, I can't imagine how I could every have the audacity to question 'why?'. I have always hoped that our experiences could be used for good.

 

I'm hoping we will close on our new home the end of June. We are scheduled to close July 3rd, however I really would like to be in by the 1st of July. I just want to get moved with as little disruption to Bill's schedule as possible. He has never been good at dealing with a move in the best of times, so I'm hoping to keep him as comfortable through it all as humanly possible. One thing we do is to go out to the house everyday. The other day we were sitting in the drive and he asked, "now what house is this?" You don't think I just about panicked? I just keep on keeping on, hoping he has a good day when we sign the papers!

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Ann, I don't pray for patience either. I pray for the strength to get through each day, without losing my temper, without making a fool of myself etc. I want to be remebered as loving and kind not as constantly losing my cool and as you say it is better "to go through the experience lovingly."

 

With Ray's dementia as with Bill's there can be good days and not-so-good days. No-one seems to know why dementia is like that, in theory it should be the same every day. If Bill doesn't want to get up, no breakfast in bed, breakfast only when up and dressed and sitting at the table. Tough love.

 

Ray does the funny moves with his quad stick too. I can walk with his arm across my shoulder and mine around his waist so we can get into a pool or across difficult terrain but he is too shaky to just hold hands. He really LEANS heavily on the stick now. But he still manages steps occassionally and walks into Lions with his head up and a smile on his face. There is still that public macho personae.

 

(((Hugs))) from Sue.

 

 

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Ann,

I don't pray for patience because I know the only way to learn patience is to practice and I don't want any more practice right now!!! Actually we are growing in patience and wisdom every day even though for me the pace seems to be extremely slow. Some days are more diffcult than others but I seriously do not believe I could have done as well with today's issues if I had not gone through the various trials of the last three years.

 

I relate to so much of what you go through with Bill. Interestingly I had not particularly noticed the cane difficulties until you mentioned Bill's. Dick, no longer seems to know how to use the cane as well. He has abandoned it around the house and though it makes the risk of falls greater I believe he has gotten stronger. I find steps to have be the most difficult. He just cannot figure out what to do with the cane I have to talk him through it. I am grateful that we now have new railings on our steps.

 

I too want to be loving and kind but I fear that I often do not succeed. I will let Dick know when I am unhappy with him! I am learning though, as the dementia progresses that telling him what is going on in my head is not a very good idea because he cannot process it. He will easily missunderstand something then obsess over it. Still I do find that I must be firmer with him and be stronger than his outbursts. My goal each day it to keep him as happy and calm as possible but must balance that with the needs of the other people in the family.

 

For me it sure helps to have people like you and Sue who know what I am going through.

 

Ruth

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