Communication Challenges

Aussie26 · May 15

I’m really struggling with communication and would appreciate any advice.

My partner was diagnosed with severe dementia and has continued to decline. They now refuse to visit any doctors, and I am the sole caregiver.

Most of the time, it’s very difficult to understand what he's saying. At the same time, he often tells me they don’t understand me, which leads to frustration, anger, or sometimes the silent treatment for hours or even days.

One of the biggest challenges is around meals and planning day-to-day activities. Conversations about food are especially hard—he frequently cannot express what he wants, and any attempt to help upsets him.

He also refuse to allow anyone else into the house to help in any way, which makes things even more isolating.

I’m looking for practical suggestions:

How do you communicate more effectively when understanding is so limited?
Any strategies specifically for meals (offering choices, simplifying, routines, etc.)?
How do you reduce frustration on both sides?

Thank you—this is incredibly hard to navigate alone.

blacksparky · May 15

Sorry to hear about your difficulties. My DW still talks but it is more of a word salad that I can’t understand. I have incorporated hand signals to communicate with her. For example I will put her pills into her hand and then take my hand to show her me putting my hand to my mouth. This works most of the time. When showering I will rub my fingers through my hair while telling her to wash her hair.
Meal wise I stopped giving her a choice. I know what she likes so I just prepare the food and give it to her. Sometimes she will say she doesn’t like what I made but I leave the plate of food on the table and she eventually will eat it.

As far as frustration goes I just try to live in her world since she will never be able to live in my world. It’s hard every day but I try to find the good things and don’t let the bad things get me down.

jgreen · May 15

Dear @Aussie26

Welcome. So sorry you have to be here but so glad you found this terrific group. I would be lost without them.

@blacksparky has given you great advice and he seems to be in same situation as you with the communication difficulties.

My DH still is still able to talk with me but forgets words and looses his train of thought many times so trying to follow longer sentences gets to be a guessing game for me. A couple of things I’ve learned is that eyesight is affected early on, so stand in front of your SO when you talk to them and also get at eye level. Talk slowly, and pause frequently so they can process what you are saying. The part of the brain that processes words seems to decline faster than the part that senses emotions, so the PWD reads your emotions more than the words you are saying. If you become frustrated or cross, they pick up on that much earlier than what you are asking about a meal. I also heard that asking LO questions can frustrate them because they might not know the answer. Instead offer two choices, or like @blacksparky does, just prepare what your LO likes and hopefully he will eventually eat it.

I hope you will come back from time to time and let us know how you and your LO are doing. This is a hard journey! I am glad we have each other to lean on.

howhale · May 16

Some very good advice already provided. It is hard when you know you have to take over every decision for your loved one to protect and care for them. It represents another terrible and final step down the path you know you are on and it hits hard. Just keep reminding yourself that it is for them, all you do is for them. I walked in those shoes and struggled also but you can do it. Learning communication techniques to work with your loved one is also a continuing process. Kind of like learning a new language but certainly not fun. Time will come when you will have to make each and every decision for your loved one and knowing how to "read" their effort to communicate will help you. You may find that as things progress, what you can offer for a meal will deviate so far from healthy it will shock you but as their sense of taste declines, I found it required me to just be glad I got her to eat some calories. Our doctor told me that we know the outcome already and making her unhappy or disturbed to eat well will not change the outcome, only make her life less and yours so difficult. Making the travel there as good, happy and easy for your loved one requires you to take often dramatic steps. I changed my goal from trying to change the outcome to making every day I had with her as good as it could be for HER, not me. So sorry you have to go through this.

Aussie26 · May 16

Many thanks for everyones suggestions and comments.

Timmyd · May 17

For meals, pay attention to what he likes. Accept that his taste in food may become more limited as the disease progresses. Don't feel bad about repetition. Find things that work and stick with them. Hopefully there are some healthier options. However, enjoying her favorite foods is a true pleasure for DW. Given where this disease is heading, I find joy in providing her food she enjoys, regardless of how repetitive or unhealthy it may at times feel.

Communication Challenges

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