Effects of Caregiving on sleep and aging bodies

Oedgar,

I feel your pain. You are tired. And your body remembers from the previous caregiving that this is not a picnic.

I realized years later, I should have hired a driver for my second caregiving gig. Find one who is reasonable, pleasant and experienced with driving in your destination city.

At only an hour away there should be many who make that trip often in your area. Someone from the neighborhood, a niece or recent retiree who could use a few bucks. There may even be a service in your area. you might find someone in Care.com for these special trips. It’s good to have a back up even for local appointments.

You are needed as an advocate but not as a driver in heavy traffic followed by long appointments. Your SM will get better care if you pace yourself over the years so you can continue to advocate for her. That’s your role, not the heavy lifting. Good for her that she has a housekeeper and an aide.
Now she needs a driver. Small price to pay for excellent heart care.

What I did for later appointments was explain to the appointment desk that I needed the next appointment at my preferred time. In my case I needed it then because I was scheduling multi appointments on the same day and I had a 3 hour drive one way. I started with the most important appointment and then fit the others around it. If they say for you to come back in two weeks you say “Why?” If it can be done over the phone arrange that.

Just ask for the next appointment at 1 p.m or whatever time you are looking for. Some doctors only have clinic for a few 1/2 days because they are in surgery or teach etc. But ask for what you want before just accepting what they give you. Sometimes the stars do align.

And when you are in a waiting room, walk or stand a bit. Maybe do breathing exercises. Just make sure you aren’t tense. Release the tension.

If your SM has traditional medicare, she may be eligible for home health care. IF she has Advantage you will need to check.
This is so much help for the caregiver. When she needs blood work or X-rays, UTI test, wound care, etc these can often be done in her own home. They monitor the meds, order her pt when needed and a bathing aide when needed. You tell her doctor she needs help as a home bound elder. Home bound doesn’t mean she can’t go out. It means it is difficult to take her out. Don’t present yourself as a hands on caregiver, more a care manager.

I had a home health I preferred to use and I gave them the doctor’s numbers to call to get the orders faxed over etc. If you call a home health company they can probably tell you over the phone if they think SM would qualify at this point. She may have had home health with her previous issues after getting out of the hospital. If you liked that one give them a call to discuss possibilities. This is for intermittent skilled nursing covered by Part B. Usually the care from home health after a hodpitsl stay is covered by Part A.

Please don’t let SM tell them you are going to take care of her. You need the help even if she thinks she doesn’t.

My DH had an ablation in 2019. Had to have a second one which is not uncommon. Since then he has had zero problems with his heart. He gets his blood work and the doctor’s office lets him know over the portal if he needs any follow-up which are usually over the phone. So some heart issues are managed easier than other chronic issues like diabetes. I hope hers is one and done. My mom had CHF, not so easy for her to manage.

SM is getting the best of care it sounds to me. Just make sure you do too.

You put your post under the Burnout category for a good reason. You're burned out on caregiving after all these years which begs the question of why you're putting yourself and your body through the gruesome task again?? It's the very last thing on earth I would have done after dealing with my parents for over 10 years! My body and mind can't handle it, nevermind early morning appointments!

I realized many years ago that an essential underpinning of the U.S. health-care system is the expectation that untrained, typically unpaid individuals (primarily family members, but also sometimes friends) will be providing much of the care and associated services, such as transportation, that formerly were provided by trained, paid professionals. IMO, this stinks. Everyone who is thrust into this system should be thinking about how to protect themselves, their health, and their finances. Just because you can help this person doesn't mean you should help this person.

See if you can get in-home visits instead.

Be picky about why she is going to the doc in the first place.

Her hygiene routines may have to be sacrificed or trunkated.

Have her hire aids, consider a facility.

Is hospice an option?

Consider court-assigned guardianship and be done with the hands-on part.

It's not that there aren't solutions. It's that you seem to be having a hard time accepting the solution options that are available. So don't think you need to continue to be a martyr. Are you going to allow yourself to become a trainwreck so that your kids will be burdened (emotionally and/or literally) with your care?

What good will it do if you burnout mentally, emotionally and physically? Everyone loses.

What is the primary POA doing while you're running yourself into the ground? I think you would benefit from some hard thoughts about why you're chasing this chaos again.

See if you find a hospital or doctor who will come to elder's home for home health care appointments. If elder has any other family members ask them to come along to help you. Tell the doctor's office ' NO, we cannot make an early morning appointment. If they cannot accommodate you, change doctor.

My mom always worked 2nd or 3rd shift and still is on that schedule. Early appointments are painful. Only the most important of appointments will be scheduled for the morning. When she was getting post hospital home pt etc. I just had to be firm on the timing "no that doesn't work for us". Sometimes it can't be avoided for specialty things but I will never accept an early appointment for anything that is not specialized or urgent.

Off topic from your question....I'd really reconsider my role in helping this person. It takes a village as they say but I think you need time to find yourself after all you've been through. Try not to repeat.... not criticizing I'm really concerned for you. Roles have a way of expanding, not shrinking...remember the book "If You Give a Mouse a Cookie"?

We just do afternoon appointments. My husband wakes me up repeatedly during the night, so we "sleep" late. It takes hours to convince him to get in the shower, then dressed with matching socks and shoes. If I take a shower, he will undress. In the middle I have to feed him breakfast, give him his morning medicines, get him to brush teeth. The only morning appointments are for fasting blood draws, after a quick sponge bath of his upper body. I know we are not the only ones because the doctors usually offer morning appts in a few days and afternoon ones weeks later.

I am not an early riser myself and I feel your pain. The only bright side that often the early appointments are the most coveted because the time in the waiting room is less. With earlier appointments, the doctors haven't fallen behind as much.

My mom moved further away and taking her to medical appts has become more burdensome. I recently started impressing on the doctors and staff that she was not nearby and coming back was an undertaking. I have been surprised at how sometimes they alter their suggestion or propose something different. I don't know if your elder's providers could do anything differently, but they should all be aware it is difficult for her to get to appointments.

I wonder who is going to take care of you…