Activities for Reluctant Mom

zirbo

Hey all, 

First post here. Long story short, my mom was diagnosed with EO Alzheimer's about 4-5 years ago. At the time, she was still somewhat active and she and my dad would go for daily walks or bike rides. She maintained this activity until about a year ago. My dad cannot get her to go for a walk or do much activity at all, so she spends most of her day sitting on the couch in front of the tv - unless she's pacing because she is agitated about something. They get out of the house about 2-3x per week to go out to dinner, go to church, etc... and at least once a week a friend comes to visit.  When I've visited, she may be very reluctant at first to go out (ex: picnic at the park), but she enjoys herself immensely once there and settled. 

After visiting for Thanksgiving and noticing that my mom is moving into a different stage of her dementia and seeing how overwhelmed my dad is, I'm taking it upon myself to help my dad out by learning more and helping him find in home care. 

There's a lot to this, but I'm trying to start with small steps, and my first concern is figuring out a way for my mom to be slightly more active because she has noticeably gained weight. She can still walk - albeit slowly - and she used to love going for walks with my dad. Biking is probably out at this stage. 

What other activities would you suggest and do you have any tips I can pass on my dad to help a reluctant loved one with Alzheimer's participate? 

Thanks in advance  

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jfkoc

I would suggest a daily drive. This would get both of them out of the house and could provide some walking for mom.

I would also suggest in home activities that they do together. ..simple puzzle, sorting photos (do put names and dates on the back and do throw out those nobody knows anything about)...make a family cookbook (take notes on the stories you mother tells abou them)... 

Jo C.

Hello zirbo and a very warm welcome.   This sort of dynamic is not unusual.  Our Loved Ones (LOs) ability to process things and to even feel the will to enter into such dynamics often begins to wane as the disease progresses.  The brain's ability to take in and to even process the information coming in from the environment can be come extremely slow and becomes problematic. Sometimes, it causes significant discomfort for our LO who will then shun more and more such activities as it can be upsetting to them.

One thing to have done, whenever there is a change in behavior, is to have the LO checked for a "silent" urinary tract infection.  These UTIs are called "silent," because there will be no overt physical symptoms, except our LOs behaviors begin to change.  It is not uncommon and can make quite a difference; always good to rule that out.

There is a wonderful online writing by Jennifer Ghent-Fuller, "Understanding The Dementia Experience," which is an important and very rich source of information covering the why's of the different phases of demenia. It is worthwhile to look this up.  When reading, do look for the paragraph on apathy which becomes part of the disease pattern.  I seem to have lost the link.

When my LO had reached such a state, I strived to find activities as there was just not much my LO seemed interested in accepting.  A Geriatric Social Worker who did home visits,  pointed out to me that I was basing my ideas on need for activity on what I felt for myself or others who did not have dementia which was not applicable for a person in the dementia state my LO was in.  While I did bring ideas for activities that I felt could suffice, it came to a point at which I had to finally understand and let go and let my LO be the gauge for any acceptable activity.  Our LOs are far more comfortable with routine and structure; change is the enemy so to speak. 

Increasing socialization can be helpful,  one way to do that would be to have your mother attend an adult Daycare Center anywhere from one to five days a week.  This way, she would have activity and socialization and your father would get some rest.

I actually hired a lovely lady I was introduced to at church who did companion care for the elderly.  She initially came, "to visit as a friend," with me setting up coffee and cake and having my LO join us. Did this a second time so that my LO would know her a bit; after that, she came for a few hours a day several times a week to keep my LO company, engage her in whatever activity was acceptable, taking short walks weather and LO permitting, etc.  This too would give your father a few hours respite.

You will get much more input from other Members; you are a loving and caring advocate for your parents; they are blessed to have you by their side.

J.

Jo C.

Aha!  Found it:

https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf

J.

zirbo

Thank you all for these really helpful tips! I appreciate what was said in the end of that article, Jo C., "You need to change your behavior to adapt to the dementia because the person with the disease cannot." This sums up my recent "ah-ha" moment during my past visit. I only briefly skimmed through the article, but will give it a thorough reading and will pass it on to my siblings as well. 

It's also helpful to think about how easy it is to approach daily life from what my dad or myself things is appropriate rather than from my mom's perspective. I've started making a list of simple activities my dad can try to do with my mom (going for a drive, looking at photos, help set the table) 

There is an Alzheimer's day care within a few miles of where my parents live, so I'll give them a call this week. 

I've never heard of elder law attorneys. My dad is pretty on top of important paperwork, but I will also look into that. 

Again, thank you all! As I've been asking for help within the community, I've been blown away by the support. I'm not grateful to be here for this reason, but I am grateful for all of the people and support. 

mommyandme (m&m)

Unless I was able to get mom outside for a walk (her in a wheel chair) or to a park to watch children or an animal sanctuary, TV and music was her go to.  I got my mom some very simple puzzles (I’d do them with her) and wipeable three or four letter word searches. (Wipeable meaning a plastic sheet with a dry erase like pen). A ballon toss was fun.  I’d also put on senior chair exercises on YouTube.  I’d do those with her too.  I offered many things but so often she would seem anxious about doing them wrong.  Water paint and coloring books, sometimes.  If she thought they were elementary she seemed offended.  I did concentration card games, she’d feel embarrassed. TV is what my mom likes to do so we digressed to mostly just that, and mostly musicals.  I must feed her now and she looks around the room a lot without focus at times.  She talks a lot to herself or whomever but makes mostly no sense. She chews a lot on baby teethers and is bedridden.  I change her diapers. Wow, how these past years have changed us.  

I hope you find a workable solution that brings peace of mind to you all.  

His_Princess

My dad and I used to play cribbage 3-4 times a night. When he became unable to do that, I found that we could play Jenga together. It doesn't take much thought, goes at just the right speed, and as long as I'm not picky about the rules (he can use both hands for instance) we have fun.

The nights we don't play jenga, I usually play the piano for him. I don't play very well, but he really likes the music. Or we look at videos on youtube, like Andre Rieu, Chico Marx, Liberace, etc. He has never watched TV, but he seems to like this.

Another of his favorite activities is feeding the birds. We have a lot of bird feeders, and he spills a lot of bird seed, but the birds don't care, and he loves to sit and watch them eat what he's set out.

In summary, easy but physical games like Jenga, music, and birds

MN Chickadee

We found adult daycare to be immensely helpful during this stage. It gave my dad and I some respite each day and the staff were skilled at coaxing mom into some activities and exercise. They had daily walks and also some physical therapists on the campus and adaptive gym equipment. A PWD in that phase will need to be soothed and cajoled into doing something. Don't expect her to take any initiative, don't give much warning. Just calmly get ready without a rush, calmly say let's do xyz so now I am going to help you put your shoes on. Bribe with a treat after if necessary (let's go for a walk and when we get back I have some chocolate for you etc.) Doesn't take much to overwhelm their deteriorating brains so make sure your communication techniques and plans reflect that.

CorrieG

We have an in home companion and that has helped increase is activity level a bunch.

Can she do activities that relate to something she was interested in before? My DH is a toy collector. He has them displayed on the dresser and spends a lot of time standing to move the toys into different configurations. Every once in a while, I ask him to pick each one up so I can dust underneath it. Since we can't display them all, he helps put them in their individual boxes and pack them away. Even when I can't get him to go anywhere else, he's always willing to spend 20 minutes walking around the toy store.