caregiver burnout - so soon?

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My spouse is 14 years older than me and slowly developing some dementia. Aside from a housekeeper who comes in weekly to do floors, etc., I am his main support and caregiver. This involves going to all his medical appointments, managing his meds, managing the household finances, driving him anywhere as he has already given up driving, and trying to keep the mood generally light.

I thought I was doing all right, but he had outpatient surgery this past week with all kinds of new instructions for what meds and when, what he can and can't do, etc. It's been exhausting. He used to do roughly half the kitchen duties but now I'm doing all. I'm disabled (very little walking ability) and the additional chores are really leaving me knackered.

Not sure how long I can keep this up. I feel crabby, depressed, and very very exhausted. My main coping behaviors are spending a lot of time online, having one or two beers a day, and I do go to a caregiver support group but that is only once a month. We do exercise, but I am starting to feel too tired to do more than the minimum of that.

Does he have insurance that might cover a home health aide? Could that be an option for at least half the time to allow you more space?

I don't think so - I don't think he's at that stage yet. Generally you need to get a doctor to "order" this sort of thing before insurance will pay for it. I'm retired, so it's not like I have to leave him alone (unsafely) while I am at work.

We're getting involved in programs at our senior center, which he likes and participates willingly in. It's just that this past week with all the restrictions and changes have overtaxed my aspie brain and my disabled body.

what you like on coffee , this helps me get through the day but it isn't a fix

I know there are some things your partner can't do unsupervised but could you do things together or is that a non starter.

Is there anyone else that could do anything at all to take something off of your shoulders. I have noticed this often that for as long as someone appears to be coping, nobody volunteers.

I'm just disappointed in myself that I wasn't able to handle this additional caregiver burden (the surgery).

Coffee does wake me up and help me focus, but you have to be careful of that. I want to watch my blood pressure and not get an acid stomach. Plus if I have to drink it as late as 6 p.m. it will ruin my sleep and keep me alert until 2 a.m.

I try to have him help me in the kitchen (within his rehab restrictions) but sometimes he is so damn slow and in my way, and I have to really concentrate on not blowing up at him. You can't yell at someone for being slow if, in fact, they ARE slow! The fact that he is still on narcotics for pain doesn't improve matters.

He has an adult son in the area but this person has proven to be crap for being responsive. I don't even bother to invite him for birthday celebrations any more, he just blows them off. There's another relative, a former sister-in-law he has known for 50 years, but she cancels EVERYTHING using migraines as an excuse. You can't blame a migraine sufferer for having migraines, but you sure don't want to rely on them for anything.

Things will get better as recovery progresses, but then he is also having another minor procedure in about 2 weeks. I guess I'm just stuck for the moment.

Wow, big relief came from telling the community garden organizer that I couldn't have a plot this year, after all. I also made PB&J for supper, with a couple pieces of fruit. Spouse was cool with that and I'm off the hook. Still have to do the day's dishes though.

Hopefully they won't take as long as they took me today , my GF seems to think it took 3 hours , I did do it in sittings but it didn't seem like 3 hours.

You seem disappointed with yourself because you are not superwoman , that's being a little harsh on yourself if you ask me.

As you know your partner is slow it will need more planning and time to do things , when you know something will take longer than normal and you have planned for it this can take the stress off , maybe don't even set a time in your head how long something will take - have the attitude that it will be done when it's done - might be difficult though if you're rigid with your routine.

Hopefully your partner will make a speedy recovery from surgery and this is just a minor hiccup in the Golden Girl Saga

Well is there any way to afford some extra help around the house? I mean I don't want to sound insensitive but I would not have wanted a relatonship with someone much older due to those problems...like if I had gone with someone 14 years older well I'd be worried about what happens when their health runs out. My boyfriend is 5 years older but doesn' seem as high as a risk as 14 years older. That said though I'd think there would be some way of getting some assistance if you have mobility issues and are his care-taker. I am not sure though..but I would think you could get assistance with that.

We pay $80 to a housekeeper one half-day a week. That comes to $320 a month or more. We really can't afford much more without dipping into my 401K. But thank you all for your suggestions.

A 14 year age difference sounds like a lot to a young person, but in late middle age, if everyone is healthy, you don't reject someone for that. He has been a good partner in most ways and I do love him. But we are entering the time of life where organ problems, cancers, and so on begin to pop up. Life's a b***h and then you die, yada yada. I think about it a lot, but I think so do most people in their last quarter-century.

That sounds like a hard situation. In some ways perhaps in part it is getting used to a "new normal" with less expectations on yourself to perform to the standards you held before. I find the fatigue of adjusting can be harder than the actual work. Maybe once you have adjusted mentally it might feel more manageable?

In terms of lightening the load on a daily basis can you use half a day a week to just batch cook a bunch of stuff that is easy to then re-heat and then on days when you feel it is really tough just grab something from the freezer?

Yes, I already do the cook once/serve often routine. In part, I'm a victim of my own expectations. I was making some wonderful dinners, so offering peanut butter and jelly sandwiches seems like a failure. But we ate it and survived, so what was the big deal there?

Yes, caring for someone on a downward trend is about constantly dealing with a new normal. I need to be accepting of his status and that status keeps changing.

I have read that spouse caregivers of someone with Alzheimer's almost universally develop depression; I also have heard that more than half the time, the caregiver dies before the patient. Part of the problem is you are mourning the loss of your partner while he/she is still alive. Now my partner is not diagnosed with Alzheimer's, but it doesn't really matter, the principle is the same.

Thank you to everyone who replied. I do feel heard.

My mother cared for her partner with ALS and the year he died she also cared for her two parents who died the same year. It was an utterly exhausting experience for her and I would say that she didn't actually get to grieve at all whilst doing the caring. She worked full time professionally and also cared for her partner. When he died she was left in this huge vacuum as she hadn't really processed anything as she had been so busy with the practical matters and too over-stretched to even see the road ahead clearly. So whilst I do understand the concept that you grieve for the partner you used to have I think it is often the case that you still don't really grieve for your partner whilst they are still alive as you are simply so busy and don't have much mental energy left for grieving.

I hope that doesn't come across as unkind in anyway but I would suggest you try and keep something for yourself (energy wise) as it is very easy to get depleted and you need to preserve some resources just for you. Better to eat PB&J sandwiches quite a few nights and preserve mental health than serve up delicacies at the expense of taking on huge stress.

If I was in your situation I would do everything I could to give back as much as possible to yourself that which is being taken out (by physical and mental exhaustion). What things do you like doing just for yourself? Is there any time during the week where there can be some space made for that? Also, just making sure you have the best diet possible to keep you strong and healthy and feeling as good as you can.

Not even if it was the man/woman/alien of your dreams ?

"Caregiver burnout" is understandable----and perhaps even is inevitable.

I wouldn't beat myself up over it. It's never "too soon."

The posters above have given good advice. You should, basically, take care of yourself while you're taking care of somebody else.

It's not selfish to seek your own pleasure; in fact, seeking and experiencing your own pleasure will help you be a better caretaker.

Last edited by kraftiekortie on 30 Apr 2018, 9:45 am, edited 1 time in total.