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MrToad
Posted: Monday, September 17, 2018 9:19 AM
Joined: 7/13/2017
Posts: 444


I wish I still had the pleasure of Kathleen’s company as she was. But that statement is wholly focused on me. For her part, she is almost always not merely content to be living at the Memory Center, but positively cheerful. More than once she has greeted me with “Daddy, this is a nice place!” or “I like my friends here”.  Most often, she is happily befuddled, and still her sweet, generous self. Today, when I first arrived: “Oh, daddy, can you take me out to the store? I want to buy my daddy a towel.”

I have long since learned to close off my internal logic circuitry, and have gone on anti-fussbudget hormone therapy. “Of course, sweetheart. As soon as the stores open”.

I know I need to celebrate her here-and-now happiness. I need to unfocus on how I’d prefer things to be, even “for her sake”. For now, she is almost always content. That is cause for me to rejoice.

But as you all know, this is not easy. Like trying to keep binoculars trained on a distant beautiful bird on the move, it is easy to lose sight. I think of how Kathleen was. Yes, those are good memories, but they are the past. I think of how Kathleen may well come to be, likely much less able to express her happiness. But that is in the future. I need to focus on her present. And her present is almost always smiling. And I must be grateful for that. She can still spontaneously reach out her hand to me, smile and say, “I love you”, even as she then looks over my shoulder and continues her running commentary about the (invisible-to-all-of-us) tall beautiful woman who keeps vigil in the corner of the garden.

Indeed, I am aware every day of Kathleen’s potential future: most of her neighbors in the Memory center are now much less able to express themselves. Take Linda, who smiles and sort of chuckles at my lousy jokes and clearly enjoys the banter between me and Kathleen. A neighbor of mine knows Linda and told me about her. So when I noticed at a piano concert that Linda’s fingers were moving with the music, I knew the story. After the concert, I went over to Linda and told her that I knew she too was a terrific piano player, and teacher of many kids in this community, and I’d love to hear her play sometime. No words, but what a smile I was greeted with!

And in this Message Board community, I know, there are so many good folks who have so many stories that are so much more difficult, with so many more unendurable things you are enduring with your loved ones. By contrast, my Kathleen is not only content, but also safe and well-cared for, and my own sadness is really largely self-centered.   

But even around here, I can see people who have stories that are also horrid—among the caregivers. There’s the staff person who just married a young man with a traumatic brain injury. She works all day with people with dementia, then marries a man who suffers from it also. There’s the young caregiver who bravely put in a full set of shifts while worried witless about an impending surgery to excise a potentially cancerous growth. The surgery was disfiguring but the prognosis turned out well. There are the several brand new moms who change diapers on wriggling newborns at home, then spend an 8 hour shift changing diapers on sometimes-combative adults. Sure, they get paid to do the latter, but not a whole lot. There’s the working-mom caregiver who goes home to the able-bodied live-in abusive mother-in-law who expects to be constantly waited on. There’s the caregiver who takes care of my wife and the other residents then goes home to take care of the mother who herself has Alzheimer’s. There’s the caregiver who buried her gang-murdered sibling, then came to work the next day. There’s the divorced working mom who’d just won custody of her kids based on her steady daytime job, then lost it.  And each of these hard-working professionals cheerfully helps take care of my sweetheart even when she is in one of her occasionally crappy and uncooperative moods.

Of course, I wish I had Kathleen back as she was, as I’m sure you wish for your loved ones. And I am doing what I can to hasten the day of a cure, pressing for funding, giving financial support, joining Trial Match. But in the here and now, as I sit in the Memory Center garden listening to some Bob Dylan with Kathleen, as she smiles and watches a couple of dogs romp in the neighbor’s yard, I realize that in 45 years I have spent a lot of time with her, but I have never before just spent so much time with her.

“Kathleen, you will always be safe. I love you more than ever.”  

 "Thank you, daddy" 

       

 

 


Jim Broede
Posted: Monday, September 17, 2018 11:13 AM
Joined: 12/22/2011
Posts: 5462


 

 

What do you do when not tending to Kathleen, Mr. Toad? Do you truly take a break? And do something entirely for yourself? Do you go for an hour or two without even thinking of Kathleen? And then come back. Feeling refreshed and rejuvenated? Making you an even better care-giver.  Oh, so much in life to savor. Life is diverse.  So many opportunities to lead a balanced life. A little bit of this and a little bit of that. Goes a long way.  --Jim

 


jfkoc
Posted: Monday, September 17, 2018 1:28 PM
Joined: 12/4/2011
Posts: 19622


When you are where you want to be doing what you want to do is there a big need for a break?

I think I understand...the love I had for my husband did nothing but deepen as the days passed.

It was not until he died that I began to be aware of the intimacy that existed. 

Mr Toad...I am reminded of this;

https://www.google.com/search?q=naomi+feil+and+gladys+wilson&oq=naomi+feil&aqs=chrome.2.69i57j0l5.8297j1j7&sourceid=chrome&ie=UTF-8


Andrew60
Posted: Monday, September 17, 2018 2:00 PM
Joined: 7/17/2017
Posts: 342


As usual Mr Toad, very moving post, a true love story.
Andrew60
Posted: Monday, September 17, 2018 2:05 PM
Joined: 7/17/2017
Posts: 342


JFKOC - I also enjoy reading your comments about how you cared for your husband. You always seem to get it with your thoughtful posts, never offering fortune cookie type advice, but speak from the heart.

The video you posted was very moving. With the right key, one can open those locked doors of folks even in very late stage.

Thanks.


MrToad
Posted: Monday, September 17, 2018 5:09 PM
Joined: 7/13/2017
Posts: 444


Jim B. asked what I do when I am not with Kathleen, which is most of the time (because I am fortunate to live just down the block from the Memory Center). Well, daughter makes sure I take some time outs, like apple picking with her and her family. That of course is nice, and a smart healthy thing to do. Taking care of The Second Patient is important, as I have learned (a bit belatedly).

But my major activity these days is teaching Alzheimer’s awareness classes through the local Alzheimer’s Association Chapter, at local churches, senior centers, et al. These are the courses one can also take on-line from the alz.org webite, but when given by a Toad volunteer, I spice it up with some personal touches. I opened a class the other night with:

“Welcome (etc)……you may wonder what my qualifications are to stand up in front of you, besides my obvious good looks”

Chuckles. Then, from the back row, “and your luxurious head of hair”.  We were off to a great start.

I find that helping people learn about Alzheimer’s, what to look for, how to deal with it, where to get help, is very rewarding. And there is a great a growing need for this.

 

 


Jim Broede
Posted: Tuesday, September 18, 2018 11:26 AM
Joined: 12/22/2011
Posts: 5462


jfkoc wrote:

When you are where you want to be doing what you want to do is there a big need for a break?

I think I understand...the love I had for my husband did nothing but deepen as the days passed.

It was not until he died that I began to be aware of the intimacy that existed. 

Mr Toad...I am reminded of this;

https://www.google.com/search?q=naomi+feil+and+gladys+wilson&oq=naomi+feil&aqs=chrome.2.69i57j0l5.8297j1j7&sourceid=chrome&ie=UTF-8


Yes, there's a need for a break, jfkoc. From virtually everything. Adding diversity and newness to one's life. Maybe a break into the realm of solitude. Or vice versa if one is locked in solitude. Continuing to do what you want to do could be detrimental to one's physical, mental and emotional health. I know addicts, for instance, who want to remain addicts. --Jim


jfkoc
Posted: Tuesday, September 18, 2018 9:03 PM
Joined: 12/4/2011
Posts: 19622


Perhaps it is the use of your word "break" .
skericheri
Posted: Wednesday, September 19, 2018 10:21 AM
Joined: 12/10/2011
Posts: 287


Mr. Toad--Thanks for continuing your postings.  Reading them brings back bitter sweet memories of my caregiving days.  I wish that I had gotten through them with the same amout of class as you.
MrToad
Posted: Wednesday, September 19, 2018 6:13 PM
Joined: 7/13/2017
Posts: 444


Skericheri-

Class?  I’m glad you enjoy my posts but I doubt that anyone describing me in my early days of caregiving would put “class” in the sentence. “Uptight, impatient, fussbudget, clueless”, yes, but “class”, not so much. And that was after my several years of Riding The Egyptian River—Denial. Kathleen was too young for her memory, mood and behavior issues to be Alzheimer’s, therefore I denied they could be. And I will always regret my reluctance/refusal to look into the possibility of EOAD.

Yes, I do think I evolved (though Kathleen would be the first to say I never got past Toad), and became a pretty good caregiver, but it took awhile and more than a little weeping and wailing (on my part).

And now, I spend many hours every day just being with her at the Memory Center, whilst the professional caregivers have the responsibility for her personal care. This is an awful, yet sweet time, and I am never far from tears.     

 

 


ruthmendez
Posted: Wednesday, September 19, 2018 11:59 PM
Joined: 9/8/2017
Posts: 2329


Same here.  I don't think I started this journey very well either and sometimes I still get frustrated.  However, Mr. Toad, it's nice to hear that you are so involved with the community in helping and educating others.  It's admirable.  I know I got some years here, but I'm wondering if I'll ever decide to volunteer in something after this journey is over.  I guess we'll see.