Wednesday, July 5, 2017

"I Leave You With a Woman Who is Very Nice..."

"...and I've spent a lot of time with her."

Me: "Are you talking about me?"

Jim: "Yes. I will take good care of her."

A lot of times Jim's sentences are a string of words that don't make a lot of sense. And he frequently mixes up pronouns. But this one I figured out. So touching. This is the man I fell in love with so many years ago. Always the romantic, so thoughtful, full of love and tenderness. I'm really going to miss him when he's gone.

More changes have come our way, and today's post will document some of these changes. I have found it helpful for me to look back, and hopefully it may help others who are on this dementia journey, as I share what we are experiencing.

Lately Jim has been very focused on zippers. He has several favorite hoodies that he wears around the house when he feels too cold (often!). When he takes it off, he is compelled to zip it up before it goes on a hanger. He is no longer capable of doing this without my help. He will try to zip it up from the top, or he will take a label (from the seam) and try to insert it into the zipper to zip it up.

Dressing skills are in decline, he now needs specific verbal cues and gestures to help him with the task of dressing. His comprehension of the spoken word has declined enough so that I try to include gestures/pointing when speaking to him.

Doors are left open. Not really a big deal, but the other day he went outside to sweep the driveway and left the house door and garage door open. Had a few unwanted flying insects, but otherwise no big deal. He almost always needs a reminder to close the car door when he exits the car.

He no longer can "find" the seat belt. Once I point it out, he does not know how to buckle it without my guidance.

I need to be present when he heads to the kitchen. An ice cream container may end up sitting on the table. A dirty napkin may be tossed in the dishwasher. We are missing a few utensils; I suspect they may have landed in the trash.

He sometimes uses the wrong utensil (fork for a sauce). He also is having trouble using a knife to cut food. I've been finding clever ways to pre-cut food that make it easier, without making it look child-like. (I use a pizza wheel to cut a pizza into small, bite size squares.)

Shower time (mine!). I never shower until Jim is ready for the day. His routine of showering and dressing usually exhausts him. This works well, so that he is content to watch TV while I shower and get ready for the day. I always leave the bathroom door open so that he can hear where I am. Sometimes he'll come in to ask a pressing (for him) question. But most times it is a nice relaxing shower, and I am all by myself!

Probably the challenge I find the hardest is to create fun, meaningful ways to spend our time together. I added Hulu and Netflix, desperate for some additional viewing options. I thought for sure the documentary nature shows would be just the ticket. He used to love to watch reruns of Seinfeld, but not any longer. He always loved watching the news, but lately tires of it fairly quickly. I try very hard to take into account his inability to hold onto a thought for very long, and that his comprehension is poor. He is most content at home, so out of the house activities are for very short periods of time. Still working on this one...

Another post is written. Thanks for stopping by. I am so grateful for each and every one of my readers.



16 comments:

  1. After reading your posts I never fail to feel gratitude that my husband kept his faculties until the end. It is tragic that your Jim has to do through this, day after day. And you, of course, although you seem to always be on top of problems, or at least know how to solve them.

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    1. Hi Valerie. We don't get to choose how our life ends, but hopefully we find the strength and wisdom to deal with the hand that has been dealt. I imagine that you have had your own challenges, as you suffered from the loss of your beloved Joe.

      I continue to be grateful that Jim seems to not be aware of his deficits. His comment about "taking care of me" suggests that he truly has no idea.

      Thanks for your comment Valerie. It is your and others' kind words that are always so consoling, comforting and encouraging.

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  2. My mom (whom I wrote about prior) went downhill really fast and reading your post, I am grateful that she did. She declined so rapidly that I didn't have to deal with a quarter of what you're dealing with. You're truly patient and so loving. -N

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    1. Hi N. Thanks for stopping by and commenting. Dementia of any kind is so cruel, that many times we can only hope for a swift ending for our loved one. I'm glad that your mom did not have to suffer too long.

      Caregivers around the world, every day, are just trying to make the best of the situation. I am forever grateful for our financial security, and for the fact that my own health is good. That is not the case for so many caregiving families.

      Thanks for sharing your perspective, N.

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  3. I am hoping that your own ability to cope will remain strong as long as is needed, Carole. Your patience seems to have grown exponentially. What a dear man he is, and he will never know how fortunate he is to have you as his caregiver. Blessings from me to both of you.

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    1. Hi DJan. I am hoping that my coping skills will remain strong. I think they will. I feel very supported by Dr. S., my family and friends, and of course all of my friends in the blogosphere :-) Feeling supported goes a long way towards making it through a challenging situation.

      Throughout our marriage Jim has always expressed his appreciation for our love and our loving relationship. And somehow, even through the dark curtain of dementia, I still feel his love and appreciation for me :-) How lucky I am!

      Thanks for your comment DJan. I always appreciate your support.

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  4. Very, very touching words from your Jim. My heart goes out to the two of you.

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    1. Hi Jalna. Thanks for your thoughtful, kind comment. Jim's soft heart and loving ways are what keep me going. In spite of the difficult times we have had from this cruel dementia journey, I try to remember that it is dementia, not Jim that gets the blame for any difficulty that we/he has.

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  5. Jim having been such a great partner before is a blessing. It would make it easier to give as much as you have to knowing what a great guy he was and sometimes still is. Had he been disagreeably and cold previously, it would be much harder to be so patient now. That sweet guy is still in there. So glad he gives you glimpses now and then.

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    1. Hi Patti. I feel so lucky to have had such a good, loving relationship. I can only imagine how hard this would be if this were not the case.

      And yes! This sweet guy is still in there :-) I'm going to hang onto that sweetness; it keeps me going. Thanks for your comment Patti.

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  6. Thanks for this update, Carole - you're so right, it helps others to read about your strategies for dealing with various declines. Things change, and we adapt. The pizza wheel and pre-cutting food is a really good idea. I appreciate the difficulty with TV programs - less and less seems to work for both of us, and I do miss that once- shared activity. Things are much more like a care-home here now, but I also find that imagining how staff manages in a care home helps me get more creative and refreshed.
    Grateful for your willingness to share all that you do.

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    1. Hi Jan. Thanks for your comment. Yes, it does feel more like a care-home at times. The constant attentiveness, workarounds to prevent upset, and wracking our brains to come up with mutually interesting things to do...all a challenge. But, as long as we are able to do so, I know that the care that you, and that I provide has to be better than care provided by someone who does not know our spouse as well as we do.

      This morning Jim surprised me with an episode where he had total amnesia for our living situation and home. Every once in a while it happens, but it always catches me off guard when it does happen. He wasn't really upset, more just mystified as to why he couldn't figure out where he was :-( Kept saying he felt like he was in the twilight zone!

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  7. Nice that you can have time to shower and not have to worry about Jim during that period (though I imagine there's always a minimal amount of concern that remains, no matter where you are if you're not right with him). I kind of resonate with your t.v. situation. I subscribed to Netflix and after my husband's shower in the evening, we'll sit down to watch an episode together. We don't get through half of the program before my husband's head is nodding to his chest. When I try to get him to go to bed, he says he's comfortable just sitting with me. I suspect Jim is that way too -- just being near you is comforting to him. Take comfort in knowing you're doing the best you possibly can for Jim, and providing comfort to those who read your posts and learn from your experience. Thank you and hugs to you and Jim. I have to add that it seems prophetic that he would say, "I leave you with a woman who is very nice..." kind of like he knows he'll be leaving you eventually, which is sad, but so very true.

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    1. Hi Tehachap. Thanks so much for your very kind words. I do remind myself that I am doing the best that I can. I don't always get it right, but I'm a quick learner. Things can change pretty quickly around here, so new challenges always seem to be just around the corner.

      It has always been my hope that my blog would be a source of information and support to others in a similar situation. It can be a lonely journey, but by reaching out, we are likely to receive support from others. The responses I receive from you and the other kind readers is nothing short of amazing. I so appreciate it!

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  8. Those little glimpses of Jim's underlying personality and loving nature must be so precious, and also bittersweet. In terms of keeping Jim busy, I wonder if there are small "tasks" that he could do by your side while you are doing a related activity around the house. For example wiping the counter or sorting utensils while you are working in the kitchen, folding face cloths when you are doing laundry, or watering with the hose while you are doing yard work. As long as the tasks are within his capacity and done at your side, it will give him something to focus on and let him feel helpful while you get on with what you need to do. (I am remembering how I used to invent ways for my children to "help" when they were young.)

    Thanks for writing, Carole.

    Jude

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    1. Hi Jude. Thanks for your comment. Yes, I am learning how to include Jim in tasks that I normally do by myself. I'm learning to let go of my somewhat compulsive tendencies, and I am finding that it gives him some opportunities to "help" me.

      Folding laundry, putting away clean dishes, sweeping the driveway, are all things he can do with some guidance/help. I need to expand this list, and I'm sure I can if I give it enough thought.

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