How to motivate your AD spouse to do things that will help her.
her own. She becomes withdrawn if I suggest that she should try doing any of these. For example: She will ask me multiple times what we are doing today and I will eventually remind her to look on the dry erase board that I prepare for her every morning.
Any hints, tricks or plans that work?
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One surprising solution:
I grew frustrated from daily searching for DW's iPhone because she would leave it in all sorts of strange places, and also she had no idea how to make a call but would watch endless loops of annoying clips of little kids yelling and shrieking. One day I started charging her phone in a drawer in our 2nd bedroom. That was three weeks ago and she hasn't asked about it even once.
I take her with me when I sing for nursing homes and she seems happy to be my roadie and enjoys the music. Plus she is getting familiar with assisted living facilities which could make things easier in the near future.
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Well done Chris sounds like two positive things especially the familiarity with the nursing homes. A creative gentle approach to frustrating problems.
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They arent self motivated because their brain is not functioning like it used to. It’s broken. They cannot learn new things and remember those things. Looking at a calendar means nothing. Five minutes later (if that) they won’t remember looking at a calendar. It’s learning to accept this person is not who she used to be. You will end up being frustrated and angry over time if you don’t learn to live in her world. Nothing makes sense to her and in turn we don’t understand why.
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Welcome. You have found the right place, but I am sorry that you have to be here. The most profound description of my role as the spouse of PWD was my job is to "manage the decline". Today's struggles are tomorrow's limitations. It is never clear when it is time to give up on something or when it is appropriate to keep trying to make it work. I doubt I will ever get good at that. I would however encourage you to keep up with the musical aspect. I have watched DW decline all the way into stage 6, but the right song still gets her dancing and puts a huge smile on her face.
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That's exactly it. Her brain can't manage any of that anymore. I think you can keep doing many of these things, but just not expect it to yield the result you're seeking. I still write things on the calendar, but only because it gives me something to do when my DW asks repeat calendar questions. It seems to make her feel better, but then she'll ask me again 30 seconds later.
The other part is dementia frequently includes a major apathy stage. I could not figure out why my DW, who had been a fireball, sat around not wanting to do anything or seemingly unable to notice and take action on much of anything. Once I read up on it, it made so much sense.
Hang in there. Adjusting to just how different your spouse has already become will take time.
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At some point she won’t understand what a dry erase board is for or be able to read the words on it. Even if she can still read them, she may not be able to understand what they mean. Nor can she remember what she just read. Think of her as Benjamin Button in that movie about aging backward … except it’s only her brain doing so. So she can’t learn new things or even retain what she already knows. Today she might know what skills she knew at age 14, tomorrow she might only knew what skills she knew at age 12.
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You don't say exactly how far along your spouse is, but it sounds like far enough along that the effects of dementia are really starting to take over her former abilities. Unfortunately dementia's main symptom is the decline of executive function. PWD can no longer initiate things, even when they seem to want to do certain things, they can no longer work out how to make them happen. As others have put it, you need to become the cruise director. I know, this is very exhausting, but it's the reality of caring for a PWD. There are endless threads here looking for suggestions on how to keep one's spouse occupied, and there are rarely any reasonable answers. Providing your spouse with a list of suggested activities hasn't worked for anyone I know. My DW is near the very end and I have been where you are, as others here said it's time to start living in her world. Sorry to be so blunt but I assure you it will make things just a bit less hard for you.
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Maybe just keep some of her favorite music playing along w the "set-up" for music direction - a simple music stand, a baton and some sheet music near where she sits. The music may trigger actions to "lead music" even briefly.
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welcome. If you haven’t done so, read the book “The 36 Hour Day” which really helped me after my DH diagnosis. One comment on this forum also helped. It said “ you can’t reason with someone whose reasoner is broken” and that became my daily statement to myself. Your LO no longer has concept of time. Can no longer work a cell phone or remote or anything else. It’s not that they don’t want to, it’s that they can’t. Music videos in a loop on your TV might work. And you might try to see if your county has senior day care for your LO. Come here often for info and support. We understand what you’re going through.
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gb2, I tried similar things to the white board, an land line phone with peoples pictures, trying to reteach her how to use the remote & microwave, etc. Unfortunately I had no success. Eventually I just had to accept that she could not learn new things and once she lost the ability to use something like the remote, that skill was not coming back. Learning acceptance was heart breaking but it did make life less frustrating for me.
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@gb2
You can't change how your DW functions in light of her disease progression, you can only reframe your thinking and change your behavior.
None of the strategies you have devised thus far are going to overcome these core deficits of dementia. Everyone is aware of the memory loss associated with dementia, but sometimes they don't acknowledge the losses associate with apathy (loss of enjoyment in previously enjoyable activities), empathy (appreciating the fact that her inability to entertain herself impacts you negatively), inertia (the ability to start an activity) and executive function (the ability to plan) and working memory (the ability to learn new material). In the context of all this loss, one ability will remain sharp pretty much until death— emotional intelligence. If her inability to independently self-motivate causes you frustration, disappointment or anger she will accurately intuit that which could cause her anxiety and a sense of failure that will exacerbate any vulnerability she might feel.
Sadly, there is no device— not a high-tech app on a phone or a monthly medication dispenser or a primary grade classroom learning practice like worksheets and white boards— that replaces the kindness and attention of a human being. I swear a great deal of the questions dad asked where simply his way of getting attention from his people. It's an awesome responsibility to be a caregiving spouse in the face of dementia. Being cruise social director while watching your LO vanish before your eyes in a tough gig.
The suggestion of filling your home with music is a good one. Your wife might be at a stage where a day program would provide her with failure-free activities and social engagement while providing you with a break to do things you need or want to do.
HB5 -
This is a great article that may give you some insights into what is happening.
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You are a concerned spouse making positive efforts to connect with your spouse and inspire self-motivation. Abilities of people with AD sometimes can change from day to day, and it’s a trial-and-error pursuit. If something seems to work, keep doing it until it doesn’t. Regarding the dry erase board, that has helped me and my DH for the last couple of years. It’s a large board that has a whole month’s calendar on it and is located next to the breakfast table. I color code with dry erase markers--green for him, pink for me, and black for both of us. When he could no longer find the correct day, I began putting a round green magnet in the block for the current day. It also has a cork board at the bottom where I put appointment cards for the next month, and it has a blank space to write special notes. Good luck on finding strategies that work—if only temporarily—and don’t give up.
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My wife has not used a phone or tv remote for at least two years. She sometimes doesn't understand what I say and sometimes can't find the word for what she wants to say, she is content just sitting and looking out the window, but when I put on 60's music she quietly sings along with every song knowing the words.
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Your expectations might be at a level too high for her to meet. I ended up taking DH phone away from him because it was a constant source of stress as he had trouble operating it. I also had a white board at one point but discontinued it was a source of stress. It has been at least a year since DH was able to operate the remote for the TV. Occasionally he is able to turn it off with the remote.
I have learned after almost a decade of dealing with three family members who had or have dementia and that is that we need to meet them where they are. We can not expect them to be motivated to do things that we want them to do. Meeting them where they are is accepting them how they are and working within that framework.
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I find what you say is true for my spouse. We go for daily rides with 50s and 60s music. She also will sing many of the songs from memory. She is also able to sing many Christian songs with me accompanying and singing with her.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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