Anyone Have Experience With Someone Suffering With Dementia?

weebeasties · Jun 16, 2019

My father has dementia. I live far away and can't visit right now. He is completely deaf as well, so I can't call him. I wanted to write him a letter and send some pictures, but I have a problem.
Sometimes his mind is ok, sometimes he's confused, doesn't recognize my mom, doesn't know who's house he's in (his own). He seems to have hallucinations on occasion as well. He asks my mom about me a lot, but about 70% of the time he thinks I'm a little kid. Sometimes he goes looking through the house for me and thinks I'm a toddler. Sometimes he thinks I'm in kindergarten and wants to know when I'm getting home from school.

Heartbreaking.
Anyway, I don't know how to write to him. If I talk about my life as it is now, will that just confuse him? I know that my mom tells him I'm all grown up now, but she says he gets upset about that. Should I just not write to him? I hate the thought of that 30% of the time that he's aware, he may be thinking I don't care about him. At the same time, I would hate to send pictures of my adult self and upset him because he thinks of me as a baby.
I'm just not sure how to navigate this. I just want him to know I love him and I'm always thinking of him.
Any thoughts?

catapault · Jun 16, 2019

I have a friend starting down that one-way street. He lives two states away. What I do is send a card once a month. Perhaps for your father once a week would be good. I sent one for Valentine's day, St Patrick's day, a thinking-of-you in between. Never get an answer, don't expect one. But as a wise friend said to me - I feel good when I send the card, he feels good when he gets it. And then probably forgets all about it. But that's O.K. I sent it, he got it.

1 bruce 1 · Jun 16, 2019

weebeasties said:
My father has dementia. I live far away and can't visit right now. He is completely deaf as well, so I can't call him. I wanted to write him a letter and send some pictures, but I have a problem.
Sometimes his mind is ok, sometimes he's confused, doesn't recognize my mom, doesn't know who's house he's in (his own). He seems to have hallucinations on occasion as well. He asks my mom about me a lot, but about 70% of the time he thinks I'm a little kid. Sometimes he goes looking through the house for me and thinks I'm a toddler. Sometimes he thinks I'm in kindergarten and wants to know when I'm getting home from school. Heartbreaking.
Anyway, I don't know how to write to him. If I talk about my life as it is now, will that just confuse him? I know that my mom tells him I'm all grown up now, but she says he gets upset about that. Should I just not write to him? I hate the thought of that 30% of the time that he's aware, he may be thinking I don't care about him. At the same time, I would hate to send pictures of my adult self and upset him because he thinks of me as a baby.
I'm just not sure how to navigate this. I just want him to know I love him and I'm always thinking of him.
Any thoughts?

That's a tough situation. I'm sorry about all this. Have you talked to your mother about about the situation? If she lives with him, she might know how to best handle it from your end of the situation so that he doesn't get upset or confused. There's also always the possibility of asking her to "hold" the letter until he's having a good day, then they can read it together so he hopefully wouldn't get upset.

MonaLyssa33 · Jun 16, 2019

I think you should at least send one card with pictures, then have your mom let you know how he reacts. If it is difficult for him to process, maybe just do a letter next time. I had a friend who was diagnosed with Alzheimer's when she was 56. She died almost 6 years ago, but we'd email every so often because she moved to assisted living by her parents in a different state. I'm not sure how she processed my responses, but I definitely don't regret sending them.

Jem · Jun 16, 2019

What if you sent those small blank "thinking of you" or "thank you" cards. You don't need to write a long letter about all that's going on in your life. A simple, "I've been thinking of you Dad, just wanted to say I love you!", or, "Thanks for being such a great Dad, Love you!" might just make his day.

LTS3 · Jun 16, 2019

A post card is also a good idea and you don't need to write a lot on it. A quick "how are you" note, a funny quote, etc would make anyone's day.

Mother Dragon · Jun 16, 2019

Most people with dementia live in the past. You might write of occasions that happened when you were young. Those might stir good memories for him. It worked with my godmother. I kept my words simple and used a largish font that was easy to read. Most people are most accustomed to reading a serifed font.

The idea of your mom giving them to him or reading them to him during his good times is an excellent one, too. So are the brief cards. Simple copies of old photos will also bring back good memories for him.

People with dementia and Alzheimer's often respond to music. You m might make some CDs of music from his era for him to listen to. A friend's wife was mostly non-responsive until he turned on the music. Then they would dance and she would have a lovely time. Sometimes she'd even come into the present.

1 bruce 1 · Jun 16, 2019

Mother Dragon said:
Most people with dementia live in the past. You might write of occasions that happened when you were young. Those might stir good memories for him. It worked with my godmother. I kept my words simple and used a largish font that was easy to read. Most people are most accustomed to reading a serifed font.

The idea of your mom giving them to him or reading them to him during his good times is an excellent one, too. So are the brief cards. Simple copies of old photos will also bring back good memories for him.

People with dementia and Alzheimer's often respond to music. You m might make some CDs of music from his era for him to listen to. A friend's wife was mostly non-responsive until he turned on the music. Then they would dance and she would have a lovely time. Sometimes she'd even come into the present.

neely · Jun 16, 2019

Both my parents had slightly different forms of Dementia as they aged but fortunately they always recognized me. You have my sincere empathies and I agree with all the above suggestions. Most of all, send a card and keep the writing brief. Pictures of past vacations when you were young, recitals, sports/games, family pets and other events that are reminiscent of good feelings. Always end by saying, I Love You! :hearthrob:

JamesCalifornia · Jun 16, 2019

~ Thinking of you as a child may be a pleasant place for your father to be at this point. Remind him of things you did together at that age - places you went and such.
Caregivers of patients with dementia are the ones who need support. Don't forget to be there for Mom.
Best wishes ... :hellocomputer:

weebeasties · Jun 16, 2019

Thanks, everyone. I really appreciate your suggestions.

1 bruce 1 said:
That's a tough situation. I'm sorry about all this. Have you talked to your mother about about the situation? If she lives with him, she might know how to best handle it from your end of the situation so that he doesn't get upset or confused. There's also always the possibility of asking her to "hold" the letter until he's having a good day, then they can read it together so he hopefully wouldn't get upset.

I've decided that having mom hold on to the letter until he is having a "good" day is my best option. I just talked to one of my brothers who was visiting them for the weekend and he said Dad was pretty "with it" the whole time. He feels Mom is mistaken about how much of the time he is confused. If my brother's assessment is correct, that is good news. I understand that this whole experience is traumatic for my mom, so maybe dad's bad days are looming larger in her mind and so that is all she talks about when we call her. She is losing the love of her life bit by bit and I know that must be terrifying for her.
Thanks again for the suggestions. I'm going to try to incorporate all of them going forward.

DreamerRose · Jun 17, 2019

Good for you. You're on a good path. :vibes:

MoochNNoodles · Jun 17, 2019

Those are all great suggestions! I especially agree with keeping things light and simple. Waiting for good days too.

My Grandparents were avid gardeners; so I made a photobook on Snapfish of pictures from their garden. Gram liked that. I don't know how she would have reacted to other pictures too much. We did always have family pictures around her room when she was in a nursing home. And she would look at pictures I brought with me. But it seemed more that she enjoyed seeing babies and things than knowing who they were. It didn't necessarily help her remember; but they brought her joy. She loved flowers so Grandpa sent or brought them often too.

I think if your Mom can help judge whether its a good day or hes getting frustrated over something that will help a lot.

1 bruce 1 · Jun 17, 2019

weebeasties said:
Thanks, everyone. I really appreciate your suggestions.

I've decided that having mom hold on to the letter until he is having a "good" day is my best option. I just talked to one of my brothers who was visiting them for the weekend and he said Dad was pretty "with it" the whole time. He feels Mom is mistaken about how much of the time he is confused. If my brother's assessment is correct, that is good news. I understand that this whole experience is traumatic for my mom, so maybe dad's bad days are looming larger in her mind and so that is all she talks about when we call her. She is losing the love of her life bit by bit and I know that must be terrifying for her.
Thanks again for the suggestions. I'm going to try to incorporate all of them going forward.

I'm glad your brother said he was with it pretty much the entire weekend. That's very encouraging.
I'm sure this is hard for you, but I'm really impressed at how you're showing a lot of empathy for your mom's situation, too. It has to be hard for her. Not to be nosy, but has she considered using a home health type nurse if she ever needs time to just go grocery shopping or go to the spa so she doesn't have to worry? If not now, in the future, and it's always good to plan ahead. Some of those home health nurses are some of the best people you'll ever meet, hard working, patient and good at what they do. Your mom might find a friend to confide in as well as a helper all wrapped up in one person.
Please keep us posted on what happens.

Norachan · Jun 18, 2019

Hi

weebeasties My father has dementia too, he has days when you wouldn't know anything is wrong with him and other days when he doesn't know what is going on.

Is your father totally deaf? Can he lip read? I have weekly skype chats with my dad. Even on the days he doesn't say anything he seems happy to see me. Maybe just seeing your face would reassure your dad?

I also make little movies for him using a GoPro. I walk around my neighbourhood or garden or wear the GoPro when I go horse riding. I chat to him about what I'm doing and ask him lots of "Do you remember when we....?" questions.

You can send movies and pictures on one of those plug in modems so your mum can show it to him. If he can't hear maybe you could add text to the movie when you edit it.

My dad tells people I've visited him after our skype chats or looking at the pictures I send. Sometimes the confusion has it's silver linings.

Anyone Have Experience With Someone Suffering With Dementia?

weebeasties

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catapault

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MonaLyssa33

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Jem

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LTS3

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Mother Dragon

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neely

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weebeasties

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