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On The Other Hand
MrToad
Posted: Friday, July 14, 2017 10:53 AM
Joined: 7/13/2017
Posts: 444


I am new to this forum; just like to share some thoughts. I have been my wife’s sole and full time caregiver for about 4 years now. She had early onset AD starting about 8 years ago, and at 68 is now in moderate stage. This means that most days she knows who I am.

As she unlearns how to dress and care for herself, I am learning not only how to help her, but how to do so with love and tenderness. (Though I didn’t fully understand it at that time, this is what I promised at the altar 43 years ago with all that about “for better or for worse, in sickness and in health”. We’ve done the better and the health parts. )

She likes to wear sun-gloves to protect her hands from the sun, indoors. Oh, I long since wore a groove in my tongue from biting it on that point of illogic. These days, I just hand her the gloves as soon as she is dressed. Of course, about three out of four times I later have to suggest, “Sweetheart, can I help you with those? That glove would be more comfortable on the other hand (or turned around the other way. Or just one glove on each hand)”. Of course it would be easier for me to just put her gloves on her hands the right way the first time. But this is  something she can still (almost) do. The times she gets it right are great. When she doesn’t, no harm no foul if I don’t fix it. If I do work with her to fix it, then it is one more in a long series of shared experiences where we are working together to get something right, and it makes her happy. The smile I get when her gloves feel comfortable is enough solar power to light my house for the day.

Of course this is a terrible thing for victims and caregivers to go through, but I am doing my best to mine every day for moments of light and happiness for both of us.

    

 


BlueSkies
Posted: Friday, July 14, 2017 11:05 AM
Joined: 2/24/2016
Posts: 1096


MrToad, hello and welcome to musings. 

I am a person with dementia (PWD, putting this in case you don't know these abbreviations yet.)  You are such a loving and patient care giver (CG).  Your wife is so very lucky to have you to help her through this illness.  I just so love your attitude. The glove thing is precious!  

I appreciate you sharing your thoughts with us and hope you will share more as you feel up to it.  Your expression of thought is displayed wonderfully!  Thank you.


chrisp1653
Posted: Friday, July 14, 2017 11:17 AM
Joined: 1/23/2017
Posts: 1286


Welcome to the forums, MrToad,

You may be new here, but it sounds like you are old to the dementia, since it sounds like you have figured out so much in your time as your wife's caregiver. I'm still learning how not to be impatient when my Barbara can't respond to things right away. Sadly, one of the ways I learn best is when I see her try to interact with others who seem to think that every person should have a lightning fast response time. At least, in those occasions, I get to be her advocate. I'd like to think that I'm growing into the person I should be, and not just becoming a grouchy old man.

You might consider posting in some of the other venues here, as you read the ways in which so many of us stumble in the dark with our attempts at caregiving. I suspect there's a lot of learned wisdom tucked away in your head.

Blessings to you and your wife,

 

Chris


jfkoc
Posted: Friday, July 14, 2017 2:26 PM
Joined: 12/4/2011
Posts: 19642


It came slowly to me too and patience was sometimes nowhere within my grasp.

I wish you would post this in the caretaker and spouse/partner forums. It is so encouraging .


MrToad
Posted: Friday, July 14, 2017 11:04 PM
Joined: 7/13/2017
Posts: 444


Thanks for the welcoming comments and the suggestions.

I would have replied earlier, but I was helping the love of my life take her shirt off to get her pajamas on. Shouldn’t take too long, except that as I unbutton each button, she follows about two buttons behind, diligently rebuttoning them. These days, not only is it a physical challenge for her to do buttons, but it is also very chancy for me to “correct” her in any way. It is better, and easier, to take the Beatles’ advice: “let it be”.  Some nights, we button up and down several times until she loses interest and I can finish the job. When we finish, we both feel we have accomplished something.

 


Jim Broede
Posted: Saturday, July 15, 2017 5:20 AM
Joined: 12/22/2011
Posts: 5462


You are practicing, Mr Toad, what I call good vibes therapy. You are a natural at it. Because you are truly in love with your wife. Yes. Yes. An unconditional love. This is a real test. For you. For your dear wife. There’s always a danger. That after years and years of 24/7 care-giving, you may reach the point of physical, mental and emotional exhaustion.  I did. But I was wise enough. To put Jeanne into a nursing home. For the last 38 months of her life. Instead of being with Jeanne for 24 hours, I spent 8 to 10 hours a day with Jeanne. Didn’t miss a single day. I was her advocate and protector. I went home. Every night. For valuable respite. I was no longer exhausted. And I became a better care-giver for it. Because I was exuding good vibes. In Jeanne’s presence. All the time. I took her outdoors. In a wheelchair. Every day. For long rides. Six, seven, eight miles. Tucked in a thermal sleeping bag. In the Minnesota wintertime. Gave her a shower every night. Fed her by hand. In the privacy of her room. It’s possible that you will need your respite at some point. Unless you find a way to qualify for sainthood. Sounds like you might. I wish the best for both of you. If I were your neighbor,  I’d give you a mighty assist. You may have to find a way to bend, without breaking. Let it be known. That I survived. Without breaking. I have since gotten on with life. Jeanne still lives. Inside me. But I have a new true love. Cristina. An Italian. That I met on these message boards. Her mother had Alzheimer’s. We live together. In Sardinia In the wintertime. Cristina comes to Minnesota. To stay with me. In the summertime. She arrives next week. We also travel together. Yes, life can go on. In blessed ways. Even after Alzheimer’s. That’s why I’m here. To let you know. About the fabulous wonders of life. Keep the faith. Keep the courage. Keep the love. Keep in touch with me. I’ll do what I can. To help pull you through. --Jim

 


jfkoc
Posted: Saturday, July 15, 2017 5:35 PM
Joined: 12/4/2011
Posts: 19642


Mr Toad....would it be OK if I copied and pasted it?
MPSunshine
Posted: Monday, July 17, 2017 7:59 AM
Joined: 5/21/2016
Posts: 2007


I love the way your are looking at this journey with your beloved. Your gentle observations and acceptance give others hope. Mining for those "moments of light and happiness" now that's a worthy goal!
MrToad
Posted: Tuesday, July 18, 2017 7:50 AM
Joined: 7/13/2017
Posts: 444


Sure, copy and paste as you wish. Glad you find my thoughts of interest.

Of course, the day I wrote that she had a one-in-four chance of getting her gloves on right, she did so, and was quite pleased. Maybe writing about it is a good thing, in perhaps more ways than one.

I try to be very gentle in helping her, never "correcting" her, and trying very hard to keep that macho "I know better" tone out of my voice and my body language, but I am sure it creeps in. So even though I am careful, I know that she knows she needs more and more help and she is at some level resisting that, of course. So I try to help as unobtrusively as possible:

"Sweetheart, you might be more comfortable sleeping if you took your shirt off before you put your pajamas on over it. You might get too warm with both on."

"Oh. OK. Good idea."

"See, I am not a completely useless toad."

"No, you are not a toad..... toads are a lot cuter."

 


MrToad
Posted: Tuesday, July 18, 2017 8:26 AM
Joined: 7/13/2017
Posts: 444


Jim

 Thank you for your thoughts and encouragement. I am fortunate that, at our daughter's urging, Kathleen and I now live in a Continuing Care Retirement Community. We currently are in the Independent Living mode, but the campus includes a Memory Care facility where I expect someday Kathleen will need to reside. I know the long term is not good, but the fact that I can literally see where and how I am going to get the heavy duty help I will need for Kathleen is a major relief to me. It lets me focus more on the present, and the days she can still enjoy taking a drive in the country, going to the zoo or the botanic garden.

Sainthood? Hardly. I suspect all of us here on this journey are saints, and perhaps all (most definitely yours truly) a wee bit sinners, because we are just human, just doing "the bestest" we can in the face of this awful, unfair @#$%&*! disease. Of course, its not exactly an original thought, but where is it written that life is fair?  All we can do is what my first boss in the Army told me: "Do your best", which I eventually realized is actually far more challenging than it sounds.

 

 


MrToad
Posted: Tuesday, July 18, 2017 8:53 AM
Joined: 7/13/2017
Posts: 444


I don't quite know if this is appropriate, but I thought some might find the attached essay I wrote at the beginning of this journey to be of some interest.

I know now that Kathleen does have (early onset) Alzheimer's, and it is my opinion that it may have been helped along by two bouts of breast cancer, and by several psychological traumas such as the premature loss of her abused younger sister.

Anyway, if you find the attached Lesson of Anthony of interest. let me know.


File Attachment(s):
The Lesson of Anthony.pdf (119800 bytes)

Andrew60
Posted: Tuesday, July 18, 2017 11:06 AM
Joined: 7/17/2017
Posts: 342


You write well, very moving. Your wife is lucky to have you to assist her in the daily challenges of AD.