Running out of steam…for now

AlzWife2023

This will be mostly a vent session, I think. I’ve been running on empty the last few days. After a few weeks of intense caregiving and helping my youngest son through some unresolved health issues, I’m finding my “endless love” for my husband with Alzheimer’s to be fading & my super positive attitude turning sour. I guess I need to rest & reset but I’m finding myself fantasying about having a life of own again and wishing this caretaking business would end.

We just got approved for a 1520 monthly payment for me as caregiver and my DH gets 1250 social security. That’s it. Plus food stamps. I used to earn over 100K at a great job. I’ve depleted all my savings. I have no retirement savings anymore. I’m taking money from my oldest son to make ends meet and I’ve been telling myself this is the right and best thing to do…that I’m lucky to be home with DH and I should just enjoy it. A friend defined a job as “worrying about other people’s problems.”

Some days I really do enjoy the home making & caretaking but other days I feel like I’m just rotting away & I can’t even do normal things like go to the gym, take a little trip with my daughter or by myself, or work hard to save for my future.

People on this board have told me before to get a job etc. but who will take care of DH? I’ll just be working to pay an aid, no?

Thanks for listening!

SusanB-dil

We hear you.

Maybe anything working from home? My neighbor works part-time for some insurance company. Just a thought.

Yeah - we HATE 'this'.

AlzWife2023

Hi @SusanB-dil

I've been searching for something from home. I guess I'll just have to look harder. Its a bit of a conundrum b/c if I start earning I will lose my Medicaid insurance and SNAP benefits. That means I will have to work full-time or enough hours to get benefits so its a bit of a Catch-22, but its worth looking in to.

Thank you for your reply. Just feelinga. bit sorry for myself today & burnt-out.

SusanB-dil

((hugs))

AlzWife2023

https://alzconnected.org/discussion/comment/202909#Comment_202909

Hi @SusanB-dil can I message you & maybe get info about which insurance company your friend works for?

SusanB-dil

She hasn't mentioned which one, so I don't ask. She is a very nice neighbor who tends to keep to herself, so I respect that. But like a lot of folks, she had to have a little more income as well. I get to talk to her when we are both outside at the same time - mail, trash-day, etc...

However - you can punch in "work-from-home insurance company" and there looks like quite a few options.

AlzWife2023

https://alzconnected.org/discussion/comment/202997#Comment_202997

Thanks. I started to explore WFH jobs after your last post and I actually applied for one, then realized that I really don’t have the bandwidth to work and care so I’ll be accepting financial help from my kids for a little while longer.

ButterflyWings

@AlzWife2023 I think I recall your kids urged you to quit working to take care of your DH. But probably neither they nor you realized how draining - physically, mentally, and emotionally - this dementia caregiving gig is.

You need respite breaks, and I hear you about going from 6 figures to the low 5's. It is a slap in the face in addition to losing your whole life as planned, and your spouse. Talk about a disastrous disease. It takes down 2 people regardless, but our job is to not let it take us out. Stats say that happens to 1/3 of CG's!

A long-time member, @Crushed, an amazing caregiver and ultra devoted spouse, used to post reminders that our #1 job is to survive our LO's disease. Whatever it takes. We give them the very best that we can, while knowing we cannot stop the progression and ultimate end of their journey. But we can, and must, work intentionally to not let their disease also kill us.

It is not easy to navigate all this, trust me - I know. And I have no idea if I will be able to resume any semblance of the career I had once DH is no longer here (which seems more and more like this may be his last year). Who knows what my mind, emotions, and physical state will be like? I think you are wise to vent here. And to try some respite options either with a companion caregiver (free via Age Options/Medicare maybe Medicaid too), or for a week with your DH in a facility or the kids coming in temporarily, relieving you.

Even a "regular" job gives you regular time off (evenings and weekends plus vacation time). This is 24/7, all-encompassing so you really do have to have some reset time. Even with the financial support your kids promised when getting you to give up your former career to do dementia caregiving, arguably one of the hardest jobs ever.

AlzWife2023

Thanks for remembering me @ButterflyWings I am sorry to hear that this may be your husband's last year. It's so hard to deal with all the grief and emotions of this disease. The idea that our main job is to survive this illness is brilliant! Thank you for sharing that. It is true! and important to remember as we make our daily choices.

I have bee reaching my goals, slowly: I got DH on to Medicaid and I found a good one day/week job that paid really well, but it was hard (teaching science to K-5) and I got sick twice (kids are germy!). I just could not rationalize it anymore. I worked for 12 weeks. I am now getting a caregiver stipend of $1520/mo. which requires what seems like endless check-ins and visits from nurses and social workers and daily online journaling.

In the last month I have been to the ER twice with my son, to the ER and hospital for three days with DH, to three doctors appointments with DH, one for myself, and entertained two nurse visits to the house, phone interviews with social workers and nurses, and tons of scheduling and rescheduling phone calls, as well as two separate power outages due to storms (I live in New England). This pattern will be on repeat going forward.

I am working on finding in-home help. I'll get there. Just gotta remember to be easy on my self. I do want to work. If I could have that choice now I would take it, but I'll be working towards it. I know I we are all doing the most we can so outside help is required.

Today DH is happy as a clam and reading me the same news story from his phone over and over and it is not funny. Bright side is son just came home with fresh fish & chips so I am gonna dig in.

Hope you have a reasonably good day. Do something nice for yourself!

Crushed

Hello I am 14 years on this Road @ButterflyWings remembers correctly

the comment is drawn from the quip Sieyès when asked what he had done during the French Reign of Terror, he famously replied, "J'ai vécu" ("I Survived"

No one has discussed talking to a lawyer about Medicaid I see what I think of as misunderstanding

your job has nothing to do with a spouses medicaid

killing yourself is not a solution I placed DW 6 1/2 years ago with the full support of my family

DW is stage 7 and in memory care 14 years after first being diagnosed. My Children and grand children want me to survive. I am lucky that finances are not an issue We can pay for both her and myself.

I see her every day on face time and once a week in person. It's been 5 years since she had any conscious response to me or anyone else. I digitized 25 photos of her yesterday that my sister sent. She is 71 lovely as ever. We were married 49 years ago in May. She was a brilliant physician, a wonderful mother and as CS Forrester wrote "a loving companion and a companionable lover"

I was her 24/7/365 caretaker for 7 years