How do I best help Mom, the caregiver?

GuyerGoudy

Hello~ first post.
My parents both turned 80 and Dad was officially diagnosed with stage 5 Alzheimer’s dementia the same week. His progression through early stages was very slow~ we’ve noticed little things for seven or so years~ but he had COVID in January, and the big slide began…
I live 90 minutes away from them with my adult brother, SIL and 7 yo nephew living 10 minutes away. My brother is largely in denial. He’s there in a heartbeat when asked, but NEVER just sees ways to help. I have been going every three weeks or so and staying 5-7 days at a time, but I am really struggling with sadness and guilt at this point.
My Mom is a martyr. Always has been. She does everything for everyone else and rarely remembers to take time for herself. This is still true. Dad is perfectly happy in the world his mind has created, so as long as he is physically safe, my worry is not for him. But Mom…she is reluctant to bring in companion care at this point but she needs time away!
They have a puppy…he adds lots of love and happiness to their lives~ especially Mom’s. There are times that Dad doesn’t respond positively to the puppy though, making Mom even more hesitant to leave. The pup begins training school this week~ so hopefully that helps.
My question: HOW DO I SUPPORT MOM and encourage her to keep her life as “normal” as possible? She honestly won’t leave Dad with anyone but my brother or me for one reason or another. I can’t have HER mental health decline too.
Thanks for reading. 💜

M1

Welcome to the forum. Your mom's instincts may be correct, that it is not safe to leave your dad by himself. If she's not open to bringing in other outside help, you may need to look at moving them so somewhere with more support. You probably have to bill it to her as more help for dad, rather than help for her.

You could look at assisted living situations, but it might be a little harder to find one that lets them keep the dog. Not impossible, but might take some time. Also depends on what they can afford. A situation that gives her some freedom but provides adequate supervision for him will be more expensive. And you probably need to factor in that he will eventually need memory care support, so that a facility that has both might be ideal. Tough dilemma and I'm sorry, every situation is difficult…..

Hope5757

We have a lot of spouse caregivers who post regularly and a couple of things seem to pop up regularly. First is someone to talk to. Someone to whom they can safely vent, complain and be angry and bitter. Safe meaning those vents won’t be used against them later and they won’t be shared with others. The other person should be sensitive to when just a listening ear is required versus suggestions on how to be a better caregiver.

The other common aspect of all caregivers (including us) is we just need someone to come and take care of the PWD on a regular basis. Someone who isn’t going to call 10 times to ask questions. Someone who’s going to keep our LO safe. Someone who isn’t going to create additional stress upon our return.

I don’t know if either of these things are possible for you. But maybe worth discussing with your sibling.

Julie Shute

> @GuyerGoudy said:
> Hello~ first post.
> My parents both turned 80 and Dad was officially diagnosed with stage 5 Alzheimer’s dementia the same week. His progression through early stages was very slow~ we’ve noticed little things for seven or so years~ but he had COVID in January, and the big slide began…
> I live 90 minutes away from them with my adult brother, SIL and 7 yo nephew living 10 minutes away. My brother is largely in denial. He’s there in a heartbeat when asked, but NEVER just sees ways to help. I have been going every three weeks or so and staying 5-7 days at a time, but I am really struggling with sadness and guilt at this point.
> My Mom is a martyr. Always has been. She does everything for everyone else and rarely remembers to take time for herself. This is still true. Dad is perfectly happy in the world his mind has created, so as long as he is physically safe, my worry is not for him. But Mom…she is reluctant to bring in companion care at this point but she needs time away!
> They have a puppy…he adds lots of love and happiness to their lives~ especially Mom’s. There are times that Dad doesn’t respond positively to the puppy though, making Mom even more hesitant to leave. The pup begins training school this week~ so hopefully that helps.
> My question: HOW DO I SUPPORT MOM and encourage her to keep her life as “normal” as possible? She honestly won’t leave Dad with anyone but my brother or me for one reason or another. I can’t have HER mental health decline too.
> Thanks for reading. 💜


I'm sorry. Im in a similar situation. My mom was battling breast cancer who is caring for my dad with Alzheimer's. She also refused outside help. Instead she wanted me to quit my job and live on their couch. I explained I couldn't as I'd lose health insurance and I need weekly injections for my RA or I lose mobility in my hands. I'm still trying to get my mom to accept someone coming in to help a few hours a week when I or my sister can't be there.

H1235

If she won’t let anyone else stay with your dad what about other help. Someone to come in and clean, Grocery delivery, meal delivery etc. Could you make up some meals for two that could be taken out of the freezer and popped in the oven. I know this still doesn’t get her out of the house, but it might lighten the load I bit. Good luck

concerned_sister

Is dad able to go out at all? Reading through this put me in mind of my FIL after he had a stroke. Not the same as AD, but a somewhat analagous situation as his wife was his constant companion and caregiver. We had a history of family vacations together and FIL and I would be the only ones in the group that liked to get up early and meet for breakfast while everyone else slept.

In his later years, I offered to take him out to breakfast on Sunday mornings. His wife was able to get out and see friends and family at church for a few hours. FIL and I enjoyed a nice breakfast out. He ate slowly, and he talked slowly. But patience comes easy to me. I would slowly sip my coffee and listen to whatever he felt like talking about, though he often returned to similar themes. While reading this post, I wondered if there was something that could be set up where DB took dad out for a couple of hours, while mom could get away. Maybe Friday night Pizza or something else would work better than Sunday breakfast, but something that was scheduled and that all involved could look forward to those few hours breaking up the LO's and the caretaker's routine. I realize this is a drop in the bucket for the scale you're working with, but perhaps a start.

michflo34

https://alzconnected.org/discussion/comment/205518#Comment_205518

Bonjour! moi même malade Alzheimer, mon cousin plus agé que moi m'aide pour les rendez vous et quelques taches ménagéres, j'en ai mare de cuisiner depuis des années et ma maladie à accentué cette envie de ne plus rien faire! j'ai eu 3 mois une aide cuisinière qui faisait un trés gros plat cuisiné de quoi manger pour le jour et le reste est congelé afin de pouvoir manger correctement et quand il en manque, je me fait acheter un plat cuisiné "industriel" !

En plus de l'orthophoniste 2 fois 3/4 heure par semaine, je fais 1 fois par semaine à l'association ALZHEIMER de Montpellier , pour un atelier mémoire de 2 heures qui est trés convivial entre les 4 ou 5 personnes présentes ! Pansez y certains, qu'il y a peut etre prés de chez vous une association pour vous venir en aise !

Très sincèrement !