Most of the questions are about problems, which are extremely helpful, however I wanted to know about some good times, some good ideas, even if it’s as small as a squeeze of a hand by your loved one or a smile.
I love when my mom does an activity/craft and she claps her hands once completed, I can see she is proud, it touches my heart or when she recognizes a song and sings along, it’s amazing she’s doesn’t remember where rooms in our small house are (live here 35 years) but can remember words to a song. Recently a song came on from Queen, the verse in the song was “Radio Gaga, Radio Goo goo” she actually repeated that and started laughing so much, I asked what’s so funny she said gaga & googoo, then laughed with her.
I try and keep her involved in as many tasks as possible, I cook on the stove she helps prep, I wash the dishes she dries them, she loves folding things, towels, napkins, etc. she picks out her clothes and sometimes I’ll give my opinion if it’s too hot or cold outside. When we watch a movie, she can’t distinguish a commercial from the movie anymore so one time I let her know that Michael Myers in Halloween is not eating PizzaHut. We recently went to a walk through to view a Jack’O’Lantern display (we go every year) she enjoyed that very much even got to eat an Apple Cider Donut! We didn’t go apple picking this year, a walker on a mountain/gravel dirt road and a 2 hour car ride was a bit too much so I had her pick apples at our market and we baked a delicious apple cake!
What are some of your good memories or experiences? I’d love to read about them:)
I have been with this family as their sole caregiver for ten years, as of Jan 4th, 2020! Huntingtons is awful. Horrible to see each child begin, in 30’s; to stumble and choke and start walking like a zombie with the characteristic gait, or chorea. Some illnesses leave a wasted body, but the mind is intact. Not the case with Huntington’s. Function follows the form with this disease and the cognition tumbles right along with the physical failings.
sometimes, the husband who is a doctor, is the hardest one to deal with. He attempts to spin a tale of his superiority to others. I know this is a survival mechanism, but on the Thursday afternoons which he has off it drives me fairly crazy that he sits down to show off his piano playing when I am literally doing two feeds, bathroom /bottom care for daughter, change depends for mom in hospital bed at Same time!! Oh how merry! Clap clap!! His way of dealing with his family falling apart is to rely on systems he and his wife put into place when they first found out she had HD. I get it, familiar is powerful. It is just far easier to get things done, pay semblance of quality attention to each of my four charges, when he is not home banging away on his piano!
well, I got inspired by the positivity I read here, to notice the beauty in his playing, sort of for his family. I will really try to appreciate it rather than resist and get frustrated and want to throw a pack of wipes at him and shout “just change Her while I take this one potty you great show off!”
thank you for listening.
She would also shiver and shake when drinking a coke, so we always shared one, made for funny memories and moments, she loved the sensation that she got from the carbonation.
I’m so sorry for your loss.
My father passed away 13 years ago with two cancers, I have been taking care of my mom since then.
More recently she had additional strokes that gave her Vascular Dementia practically overnight. She was fine one day then the next day we are both on this new path. I have read some great articles and books on the matter, I am very afraid of what lies ahead. Even in disastrous situations however there can be a spark of good. I don’t get much sleep, I’m doing this all alone, it’s stressful I agree, but my mom currently is still able to do things and enjoy things (I don’t know for how long...a month, a year or two?) I’m trying to make the best of it. To read about other members good & bad situations I feel may help.
Thank you for your post.
i like your thread idea and i hope others will contribute . i just personally remember a lot of stress and sadness at the decline and eventual loss .