Later stages of dementia.

citeon2cv

Hi I am full time carer to my mum. She was diagnosed in 2018 even tho signs were there many years before. Mum is now housebound and sleeps a lot. I am able to get her up for a few hours a day . Food has become very little. Mainly just chocolate cakes etc. she does drink protein shakes and liquids.. I don’t battle with her about anymore as it’s not fair on either of us. She still very much enjoys music and her little dog once she remembers dog is there. I am now very tired. I do have help and can get out of the house once a week to shop etc. It’s only me and mum here I have a son who lives in uk and a daughter in Dubai. My son is good being on the phone and visits when he can. I feel very isolated a lot my own doing as the friends I have constantly say how my life is tied it’s over I should go to the bar more etc. Things I don’t really want to hear. It doesn’t help. I also know I sound selfish as I don’t really want to hear all about their recurring problems as they don’t change from week to week. I have forgotten how to laugh. Which makes that difficult for mum. I can’t get myself out of this huge dementia bubble I have been living in. Also have so many fears of life after mum. I gave up work along time ago to help my parents as we couldn’t find good reliable help. I am trained in caring dementia/ Alzheimer’s so it made sense for me to become their carers. I am 62 this year so not retirement age yet … I don’t have many years of paying in so won’t be getting much. I sleep when mum sleeps now due to being so tired. Anybody please have ideas of how I can get myself out of the rut and hole I’m in.
Thanks for reading …

Anonymousjpl123

I would say you are doing a LOT and to give yourself grace. I understand feeling selfish with friends - it is so hard having this constant stress of caretaking to find time to yourself. That said, I do hope you can find some friends who are facing similar issues. Do they have Alzheimer’s groups near you? Even going to just one helped me to feel less alone. Maybe there are some groups near you? Maybe an adult day care, to give you a break? You mentioned the bubble - that makes me think having some extra support for both you and her would give a welcome perspective.

sorry I am not more help. I hope it gets easier.

BassetHoundAnn

Hi, Citeon2cv. Welcome to the forum. You're experiencing the same feelings that many of us are experiencing: endless exhaustion, mental and physical, a feeling of being suspended in a bubble with your life on hold, feeling cut off from friends and loved ones. I wish I could provide a simple solution, but relief seems to come in small steps.

The first thing you should do is to be evaluated by a doctor. Your chronic feeling of fatigue may have its origin in a physical problem. Be persistent and insist the doctor investigate all avenues, especially if this fatigue is unusual for you.

You should also contact your local Alzheimer's Association chapter and ask if they have any support groups. Support groups are a great way to make friends as well as to find help and direction.

When I took my mom to a geriatric specialist to be evaluated the doctor kept asking my mom "What gives you joy? What gives your life meaning?" My mom just stared blankly, unable to comprehend such a question. But I ask these questions of myself often. The answers help me carve a path of joy and meaning beyond caregiving.

Friends give me joy, so I try to make new friends and be more diligent with keeping up with old ones, even if they cannot comprehend my life these days.

I've also tried a few new hobbies, joined a few clubs. Some of these pursuits haven't worked out well, but one must keep trying.

I also keep a gratitude journey and jot down a few things I'm grateful for each day. That often keeps me from spiraling into the blues.

One of the toughest aspects of caregiving is that you're in a constant state of mourning. Anticipatory grief they call it. And you can be in this state for years watching a loved one decline. You need to care for yourself because there is nothing harder to endure.

These are just a few ideas of things that have helped me. But do get checked out by a physician. Caregiving can be devastating physically as well as emotionally.

Hugs to you!

mommyandme (m&m)

If you can get help in more often and/or use an adult day care setting for her, that might help. I needed a lot more than one day a week to get out and away. Even then I was still in caregiving mode but at least I was breathing my own air.