Burnout

CindyBum · January 26

Well…I sure have it.

I don't know how so many of you have been able to manage caregiving and working. I finally got some day caregiving in place, but a bit too late for my own mental health. I'm not physically having issues, but I just cannot get myself up and out of the sad, crying all the time, agitated and worn out hole I dug while trying to work and do solo caregiving. I did it for too long (about 5 years now), for me at least.

Along with how burnt out I feel, I feel so weak that I couldn't manage it all, even though I see relief coming with a caregiver. And I feel so guilty that this has now become about me while my DW is suffering through this awful disease.

Quilting brings calm · January 26

Please don’t feel guilty. You deserve happiness and quality of life just as much as your DW does. It’s not your fault that she’s no longer capable of that. It’s also not possible to make it so she is capable of it.

All human beings ( at least those whose brains allow it) need downtime, relaxation and rejuvenation and socialization. Caregiving without time off doesn’t allow for that. Time off that only involves hours you work also doesn’t allow for that. Especially caregiving for someone with cognitive issues where you have to make the family decisions on your own.

Can you financially manage respite care for at least a week every few months? That would allow you time to catch up on chores, maintenance, maybe a staycation or a vacation.

Is it time to call in hospice or to consider placement- paid caregiver costs come closer to facility cost than you might think.

Karen711 · January 26

Dear Cindy- First of all- I’m sending you a big fat hug! Yeah, it sounds like you maybe waited too long, I think that’s called human. If I recall correctly I don’t think your wife has been accepting of the idea so that makes it hard on you to get someone in. You’ve been beyond amazing and now the best thing you can do is get someone in soon so you can get some rest. You haven’t failed!!! But you have to keep yourself in one piece so you can keep going. And that’s the BEST thing you can do for your wife. That’s the place I’m fast approaching and I feel what you’re going through! The quote on my avatar for this group says “Asking for help isn’t giving up, said the horse, it refusing to give up”.
Sending you love!

Karen

trottingalong · January 26

I understand the burnout and feelings of despair, depression and being overwhelmed. I went to the doctor recently because my fatigue, stress and anxiety levels are causing health issues. My husband isn’t even at the place your dear wife is and it’s been getting to me. I asked for a mild anti depressant. Something I thought I would never do, but I was scared of where I was heading. I felt like I was stuck in a whirlpool and barely coming up for air. I have made some changes for myself and my health and for the moment at least, things are better at home. I hope the caregiver can offer you the relief you need.

Biggles · January 27

Please don’t feel guilty none of us were trained to do this job, none of us wanted or expected that life was going to take this turn. Exhaustion comes from working and caring so very much. Just breath slowly in and out, as my friend who lost her husband after a debilitating 5 months, one moment, one hour, one day at a time. Walk in the sunshine if you get the chance and breath, take one day at a time. Now it’s time to be kind to yourself. Sending hugs.

Dio · January 27

Cindy, many of us carry that guilt for sure. We're with you. I can tell you the cliche "do not feel guilty," but hey, there it is, just sitting in our hearts like a monolith. And the guilt worsens after placement in memory care, believe or not. But you'll get some sleep and free time to heal yourself. I was fortunate that a dear friend took DH on 3 separate weeks to give me respite. I got greedy for sure and relished the freedom, away from the horrors of LBD and 24/7 caregiving. Among a long list of reasons, I finally placed DH almost 2 years ago. I am working on healing myself and it's a slow progress. Now I have to deal with a new set of emotional challenges after placement. I get so depressed each time I visit him when I see the other residents who are tormented by dementia one way or another. DH wants to come home. Of course, he does. So does everyone in memory care. How can I continue to say no when I myself don't want to be there?! It's a no-win one way or another. Will I feel better if I make guilt my friend instead of fighting it? Hugs to you…

ButterflyWings · January 30

https://alzconnected.org/discussion/71883/burnout

More hugs coming your way! I think this is a natural feeling, but we have to work to shake it off. Easier said than done, I know, but just keep breathing and when you can, maybe change the voice in your head even temporarily, to the one that says "I'm doing my best", "We are both important", "Caregivers need support too".

Whatever affirmations you can think of, to shift the negative thoughts when you notice them. I just wanted to say, yes this disease is about you also. It affects both people. Please don't beat yourself up on top of all that you have done to keep you both afloat this long, through the most unbelievably challenging circumstances. You deserve an award for just persevering, for all the ways you have lived for two — when just living for one is a heck of a challenge most days. You are not weak, or giving up, or less than, for accepting whatever help is available to give you a tiny bit of breathing room. FWIW, you could have been looking for a daytime aide and just not found one, which happens to many of us. So, I say congratulations and good for you to be starting that process now!

Caregiving and staying in the workforce is a heck of a lot to even attempt. Yet you have been doing it. You are strong and now getting assistance as your LOs disease progresses. Makes sense to me. So, you are getting help just in the nick of time and it probably is a shock to your system to deal with yet another change, even though it is a good one. That is stressful too so it makes sense that you might be feeling like things are spiraling and too far gone. Please keep breathing. And remember those positive thoughts. Some days, I just say silently, "I can do this". or "It's OK".

CindyBum · February 2

Thanks all. In a moment of clarity, I realized I have vacation, sick days and can take a family medical leave from work. I’ve been running so hard these last few years…dementia caregiving, a move, a new job…I didn’t even think of it until now.

If you’re working and caregiving, please don’t forget you may have this option too!!

So. Starting next week I have a month off from work. It’ll be rest, respite, arranging more caregiving help and viewing MC options in my area. I’m not willing to go down the drain along with my poor DW.

Bailey's Mom · February 2

I don't know how you do it…caregiving and working…I can barely manage caregiving. That is a herculean task! I can do it physically, so far, but am slowly falling apart emotionally. I was never cut out to be a nurse, but now have to learn to be at least a somewhat acceptable one…can't say I'm particularly good at it! Hope you enjoy your vacation…not like taking a trip to Hawaii or somewhere, but at least you'll have some times to make some changes and get some help.

CampCarol · February 2

https://alzconnected.org/discussion/comment/235511#Comment_235511

I am so glad to hear you're doing this for yourself! I know how hard it is to do both and left my job a little over a year ago. Just try and make a small (minimal) list of what you absolutely want to achieve during this time; it will go quickly! Rest up and take care!

Russinator · February 2

((HUGS))

CindyBum · February 2

https://alzconnected.org/discussion/comment/235525#Comment_235525

The job I might have been able to handle if I wasn't falling so completely apart emotionally from the caregiving. It has entered my work in testy emails to colleagues, something I have never done in 30 years of a career. It's been pretty embarrassing to be arriving at this new job exhausted, irritable and angry to go along with my utter heartbreak. I think I'd be lucky to keep my job another year if I can't recover a bit. I'm a real joy to be around. Haha

Why I'm holding onto work so tightly is largely about finances and keeping my brain working, but also I worked my entire career to hit this level and it's been a real difficult process letting go of those goals I had. But, I have to be honest with what I think is important right now and it definitely is not work anymore.

I plan on doing very little during this month accept rest and rest some more. I hope it opens a door to more mental and emotional clarity for me. We shall see.

sandwichone123 · February 4

I realized pretty early that I'd have to choose between job and caregiving. I knew that 24/7/365 caregiving was not for me, and I loved my job. I also knew we were young (60) and I didn't want to be out of the caregiving gig and also out of work with no current experience and no contacts.

I kept the job and put my dh in an excellent care facility in the next town. It's far, but worth it. He's gotten great care and mostly likes it there. I don't think he would have mostly liked being home with me all the time.

Burnout

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