I'm Burning out

jehjeh

DH is actually very sweet (most of the time). We have a companion/caregiver two afternoons a week and I can get out for a bit. It helps but not as much as I thought it would.

I realize I'm burning out but he's not yet at the point where he needs MC. I struggle to do housekeeping, bill paying, I'm just putting everything off. My issue today is that cooking has become overwhelming for me. There are some foods he cannot eat (cheese) and others he just doesn't like (frozen meals).

Have others experienced this? We need to eat but I can't bear the thought of planning, shopping and cooking.

Caregiver is $50.00 per hour for 8 hours per week. I hate the uncertainty of this disease. Without knowing if he'll need full time care or MC down the road and for how long, it's impossible to plan financially.

I'm struggling here and don't know where to turn for help.

Carl46

Jehjeh, I think your husband is ready for memory care if you don't leave him alone. In fact, he is in memory care, provided by you and the companion.

I got some time off by using an adult day care five afternoons per week. I was paying $65 for five hours, or $325 per week. I dropped my wife at noon and picked her up at five pm. The other clients were mostly disabled adult children of working parents, but they had some Alzheimer's clients. It was very helpful to me until her physical problems made it no longer workable. I could make my doctor's appointments etc. in the afternoon, take walks in the park, shop for books, grocery, whatever, and generally do what I wanted and needed to do for 25 hours a week.

You might see if there is a facility like that in your area. The local Office of Aging can help you with that. Good luck.

Timmyd

My first thought is that you may be paying too much for your companion/caregiver. Even in more expensive areas you should be able to find decent care for half that price.

Consider identifying specific behaviors that are of most concern and see what can be done to address those.

Know that the symptoms will change and that is not always a bad thing. My DW eventually became pretty easy to feed. Her taste became rather limited and she was fine with repetition.

We do a lot of takeout that I can supplement with some grocery store salad and side dishes. If you plan it well it is not that much more expensive and can be a lot less work. Also look at ready made food in the grocery store.

Try different things. The things that used to work may not work anymore. The things that work now may not work in the future. The way we shop, cook, and eat is much different today than it was 5 years ago.

I regularly have these low spots, where I feel overwhelmed and things feel completely unmanageable. The best way to describe it is that I am unable to imagine a future. I just keep going and tell myself this is a phase I will get past. When going through hell, keep going.

Finally, if you can, call the ALZ helpline. They are great people and will listen for as long as you want to talk. I have used them a few times. It does not fix anything, but you will feel a bit better knowing there are such caring people who understand your situation and are available to hear you out.

JDancer

I recently enrolled my spouse in hospice. The qualifications for dementia patients are different and he was (barely) able to qualify. He has a weekly bath with an aid and weekly volunteer visits for a couple hours. Every little bit helps. Tomorrow I will drop him off at a lovely hospice facility for 5 nights!!! It will be my first break in 5 years. Perhaps there's something similar where you live

TooEarly

Jehjeh,

I'll tell you from my experience: If you think you are burning out, you probably already are burnt out.

I knew I was but I kept going, which was not my best decision. By the time I got DW placed, i know it was a bit overdue.

I don't know where you live, but to find services and facilities look up ALZ services in your area. Also, try the ALZ Assoc 24/7 hotline — they were very helpful to me. "A Place for Mom" is a national company that might also help.

Buggytoo

Burn out is very real. Even now with my DH in memory care with hospice services, I am very worn out. The waiting, the wondering, the worry all take a toll. For your cooking challenges, I recommend Trader Joe's frozen entrees. They are really a cut above the average grocery store frozen entrees. And if you accompany them with a grocery store salad bar salad and a bit of dessert they can feel like a home cooked meal. If your loved one will eat soup, that is also something you can buy in many grocery stores ready made. Pulled pork or beef sandwiches are also easy to make and if add a salad or vegetable, they are relatively healthy.

Biggles

it’s such an overwhelming disease and when you are tired its dreadful and you feel so alone. I too often feel overwhelmed and just cry. I haven’t had any luck with help so at the moment I am totally on my own. This is how I get through I compartmentalise the daily grind.
1. Get through the night

2. Usually DH is pacing the house at 5.30am so start with a tea or coffee and watch the world wake up (birds and sun)

3. Shower together and gently move him into shaving mode, which I have mastered.

4. Dress my DH, he has his own dressing room and I leave him with his house shoes (this takes him ages to put on)

5. I rush through dressing and throw the bed together (this helps me tidy/control my space)

6. Put quiet music that he likes on my iPhone and discuss and have breakfast. I insist we have it outside on our back patio in the garden.

And so my day goes with all the different chores, repeat, repeat always the same routine. Maybe this will help.

With meals I have made a list of breakfast, lunch and dinner choices. I did this during COVID it stops the mental anguish of having to decide what to eat, you just have to pick something. Also double cook if you can and freeze the second portion.

With shopping 🛒 I use on-line supermarket and they pick, pack and deliver for everything.

Bill paying is hard but I do this when my DH is sleeping.

I keep a diary with all appointments written down and any other relevant information. This gives my head a rest and I know I won’t forget anything.

It’s a different way of life all surrounding your DH. I fit in reading a good book in the toilet one short page at a time but at least it’s something for me. I wander and water the garden etc etc.

We occasionally go to the afternoon theatre music sessions. I have a Companion Card 2 seats for the price of 1. My DH often goes to sleep 😴 in the dark, that’s fine with me and if it doesn’t work we just leave.

Oh how I do feel for you and for me. I often go down like a ton of bricks and it horrible. I find it helps me to hear different coping methods.

Please know I’m thinking of you.

Jgirl57

I often go through periods of hating the shopping cooking clean up associated with meal time. When this hits, we do cold cereal for breakfast , frozen fruit and yogurt for snacks and pre prepared meals /sandwhiches and disposable plates, cups, bowls ( I stay with regular cutlery). After about a week of this I feel ready to cook again. I usually do this about one week a month . It has helped me emotionally . I also had help setting up auto draft bill pay for our bills and I cancelled all but one credit card. Give your self a break however you can . ( Also if we are not going anywhere we stay in Jammie’s all day and that cuts back on laundry )

Jgirl57

p.s We don’t buy frozen meals , I get the prepared meals from the deli section of our grocery store

Biggles

Ps I forgot one of the other interesting things that has come about accidentally. I often take used goods books old clothes etc to our very good second hand store. I have found it such a lovely place to go, understanding caring staff, wide isles for wheel chair access, a comforting sense of pre-loved items. We go there these days puppy, me and my lovely slowly shuffling DH for a wonderful wander and sometimes I find something of interest to buy, like an exercise walker for $15. Ticks lots of boxes ✅ exercise, cheap thrill and a smile.
Love reinventing our life doing things I never would have considered.

jehjeh

Thank you to all who responded. I got a lot of good suggestions and I will definitely try some of them. It's so helpful to have the input and support from all the experts. That is, those who speak from experience not just textbooks.

jehjeh