Finding his way around the kitchen

alzalex

My parents live together in an independent living apartment that is part of a community that has multiple levels of care. My brother lives near by and helps them with urgent issues. I live about 2.5 hrs away.

My father has been recently diagnosed with ALZ and is becoming stressed because he's having trouble finding things in the kitchen. He's also having trouble remembering how to do things like use their coffee machine.

This is all so new to me and I feel overwhelmed. My idea to help my father with this issue is to go to their home and see what he has trouble with in the kitchen and make labels to place on drawers and cupboards that say what is inside them.

I am also thinking I'd create big, simple, laminated instructions for things he wants to be able to do. Much of this, my mother could do for him but I want to help him feel as independent as possible.

I'd love any suggestions you might have. I'm worried that while this seems like a good idea to me, there might be some aspect of living with ALZ that I'm missing that actually make this not a good idea.

Thanks,
Alex

towhee

Simple large labels for the most important things will help for a while, but make sure it does not cause upset. Maybe say you have a new "labeler" and you want to try it out. The problem with the coffee maker and some of the other appliances is that once he forgets how to operate them he probably will also lose the ability to use them safely and to know what to do in an emergency. I think your mom will need to supervise.

ARIL

Whether signage will be helpful depends on your father’s stage in the disease progression. People get diagnosed at various stages.

A common staging tool that a lot of people on this forum use is the DBAT (Dementia Behavioral Assessment Tool). You can download a copy lots of places. Here is one link:

https://www.tamcummings.com/tools

You will see that this tool gives you a sense of behaviors that may come in time. It can be discouraging to read, but generally it’s helpful to know what is possible. Remember that every person’s experience is different.

Only people early in the disease journey are likely to respond to signage—or even remember to consult signs or instructions. Labels on cabinet doors might help for a little while if he’s at an early stage, but they may not for long. Come to think of it, though, I got some good service for a while out of a big desk calendar—one thing my dad did remember to consult.

It’s great that you want to be proactive. I am sorry you find yourself on this difficult journey. People here understand how you feel.

SDianeL

welcome. Sorry about your Dad. Labels may work for a short while. As the disease progresses he won’t know what the words mean. I doubt instructions will work. People with dementia usually lose executive function early on. They are unable to remember how to do things. They can’t follow directions or instructions. Read the book “The 36 Hour Day” which helped me after my husbands diagnosis. Your Mom will need to supervise him when he is using any appliance. It’s not safe for him to do it alone. He could be electrocuted or start a fire. Have her read the book too. Give him easy things to do to help like set the table or fold towels.

H1235

I agree with others, it may work for a while, but probably not long. I have attached a link to an article titled understanding the dementia experience. You might find it helpful (just in general, not with this specific problem). You may find when he gets confused or frustrated he blames the coffee maker for not working properly or your mom for not keeping things in the proper drawer. People with dementia often have anosognosia. This is an inability to recognize their symptoms or limitations. It can be very difficult. It’s best to not point these symptoms out, that usually doesn’t tend to go over very well. You may find he takes directions for using the coffee maker as an insult. Everyone is different, so who knows. If he normally makes the coffee he may even be annoyed if your mom takes over that task. Most of us find its best to come up with small fibs. Something along the line of “I happened to be up early and thought I would make the coffee for you for a change”. If it eases his stress and anxiety a little fib is worth it in my opinion. I hope you can find a solution.

understanding-the-dementia-experience.pdf

alzalex

Thank you all so much for the feedback and the resources. This is really rough.

harshedbuzz

@alzalex

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

What does mom, as his 24/7 caregiver, want?

The others are correct that labeling/instructions are, at best, a short-term solution. This would rely on dad's ability to be able to not just decode written English but also comprehend it. Cognitive reserve and the area of the brain where the disease has spread will impact this. Also, dad would have to learn and remember to use these tools which will be limited by his poor working and short-term memories.

The two PWD I know who did benefit from labeling/written instructions actually came up with the strategy themselves early on before they were diagnosed. Interestingly, one had been a teacher and the other an executive secretary who'd spend careers bringing order to situations. When I cleaned out my aunt's house, I happened upon several sets of instructions including a detailed sheet she wrote on using her first flip-phone.

I can appreciate your desire keep dad independent. Sometimes maintaining the illusion of independence comes at a significant cost. It can be emotionally exhausting for a loving caregiver to constantly deal with supporting their LO through a task they once did without thinking. It serves as a micro-reminder of what is being lost. It can add to the workload of a caregiver who is now responsible for all aspects of the running of the household to deal with the additional handholding around supporting this skill and cleaning up after.

Another piece that can be annoying, is that sometimes PWD who are attempting to do something they no longer can damage or destroy objects that they can't really use independently. They might even throw out a perfectly good appliance because they assume it's broken when it's user error. Dad tossed TV/fan remotes, broke 2 sets of headphones and replaced 4 perfectly good laptops in the phase where he couldn't independently use most tech.

HB