Post-hospital exhaustion for caregiver?

ARIL

My father was in the hospital for two days last week. Admitted through the ER. There’s a lot to say about that—especially about the shocking lack of training by doctors to deal with a patient who has dementia—but right now I am looking for advice for myself.

I was with him almost constantly in the hospital (it was essential for so many reasons). I even think I handled it as well as was possible. Now that he is out and recovering, I am exhausted physically, mentally, and emotionally, at a level that is almost surprising to me. It was “only” two days. Yet I still have to go to my job, manage my own home and family, and assist my father through frequent visits (in a MCF). I’m not complaining about the labor; this is just back to the way things were before last week. Hard but more or less doable.

Does anyone have advice? I really need to bounce back, but I don’t quite see how. “Giving myself grace” is fine, but how is that operationalized?

harshedbuzz

@ARIL
Following.

My mom doesn't have dementia; I serve primarily as transportation and escort/interpreter at her many medical appointments. We went through a phase last fall where an outpatient surgery, that was very successful, was followed by 5 hospitalizations related to aspiration pneumonia and sepsis. In between were multiple post-hospital visits, catching up on specialists unrelated to the hospital, administering her IV abx and serving as her social life. It's exhausting and I haven't really found the answers for myself much less strategies to share with anyone else.

What assistance do you offer on your visits and is it something that could be delegated to someone else? I know a number of the folks in dad's MCF had regular visits/help from private aides to help with the sorts of things MCF staff don't have the time to do or that aren't part of the care plan. If dad can afford it, perhaps introducing someone to do some of what you're doing would help.

That said, even when I can delegate some mom-care to my DS or niece it invariably goes sideways. I sent DS to take mom for a PICC line dressing change, and he had to call to make sure he was at the right building (big office campus) because mom didn't recognize it despite being there weekly at least 5 times. And when niece took her for a swallow study mom denied GERD when giving a history; this was the cause of her aspiration and getting to why would have happened sooner and might have spared her the last 2 hospitalizations.

HB

ETA: I especially haven't found an answer to figure out a way to mentally set-aside the weight of the responsibility I feel to have a mental break.

ARIL

Thank you, HB. It is reassuring to be understood. I appreciate it.

There’s only my spouse and me to assist my dad. We moved him across the country last year. And the costs of MC are already straining resources; I see that other families hire part-time companions/aides, but that’s not an option for us. Or not an option since I have to assume several more years. If there’s a sharp decline I may make a different calculation.

People are quick to say, “Be sure and take care of yourself!” But this rings hollow. How?!

Thanks again for your thoughtful reply.

JulietteBee

Hi there! I wanted to hop on and say that I totally get the exhaustion and the herculean effort required to set it all aside to get some "me time."

I am physically disabled from a genetic, life-threatening disease that should have taken me out already. God realized my mom was going to need me. So, here I still am, 30 years beyond the anticipated age of my death.

As an octogenarian, mom has lived long enough to have inherited a few health conditions of her own, dementia being the newest, as of Dec. 2024. Cognition decline has been observed for the past 3-5 years.

Whenever she is hospitalized, the last time was May, I am at her bedside from morning till late evening. She does not remember what to ask the doctors, neither does she remember their discussed plan of action. I am an RN professionally, and hers personally.

My dh insists that I am harming my own health. I agree, I am. However, as an only child, I have no one to "pass her" off to and he and our adult offspring both work full-time.

As caregivers, we may not be able to take days off, but even an hour can be so rewarding. Here are some of the things I have done.

Ideas: If you have a spa nearby, treat yourself to a massage monthly or quarterly. Simple as this sounds, try to carve out 1 hour/day to curl up in bed with a good book. Getting lost in a book is one of my favorite escape hatch. On the weekend, find a good Netflix movie to watch, eat popcorn, and lose yourself in a make believe world for 1.5-2 hours. Get hubby's buy-in and have him man the phones. I tell my hubby not to disturb me UNLESS the house is on fire.

Boundaries: I got my mom moved into an IL facility last year. It is 1 mile from my house. I've made it a practice to visit her 3 times/week for 1-1.5 hours to sort meds, troubleshoot pc/phone, go through mail, address any issues with the apartment, etc. We speak twice a day on the phone. I tell her to write down what she needs and to save it for when we next speak. If not, she will call me 20 times in a day with one problem or the other as they pop up or as she thinks of them. I also send her a text msg every morning outlining her day and mine. I task her with continuing to do whatever she still can do; such as make her own doctor, dentist, or hair appointments.

We HAVE TO carve out time for ourselves or we will end up dying before our pwd. Then what…💔

sandwichone123

I'm exhausted today and haven't read through the responses, so I apologize if this is duplicative. I suggest setting up FMLA with your employer. The Family Medical Leave Act allows you to take time of work to care for a loved one with a documented illness, and it can be taken intermittently. Using FMLA would allow you to take a few days off now to recover, as you'd be caring for a family member who was recently discharged from the hospital.

psg712

ARIL, I hear you. My mom has had two hospital stays in the last month. The first one occurred five days after I had cancer surgery. My DH is super supportive and did all he could, including a 6-hour stint in the ER with mom ... but I'm the daughter, the POA, and work in health care myself so there were things I just had to be present to handle for mom. The silver lining was being on medical leave from work, so even though I wasn't resting as much as I needed to after surgery, at least I wasn't juggling work responsibilities while mom was in the hospital. Still, it's a lot.

ARIL

Thanks, everyone, for the excellent suggestions and the empathetic discussion. My DH is likewise supportive: He was with us in the ER most of the time and then relieved me at the hospital the next morning so I could go home to eat and bathe. That helped a huge amount (so much so that some of the hospital records refer to my father’s “son” LOL).

The “mini-vacations” of an hour or so are a great plan, @JulietteBee. And our dog is a reliable source of fun and love. 🐾

@psg712 Hope your own recovery from surgery proceeds in good order!

@sandwichone123 FMLA is something I have intended to look into. I will do it, thanks.

SDianeL

I don’t know if this will help but my boss told me the first time I was promoted to learn to manage my time using the 4 D’s: Do, Delegate, Delay and Drop. So I made lists. Do the things that must be done, delegate what you can, delay things that don’t have to be done immediately and drop everything else. Can you get help in the house? Can you delegate to family or friends? Can you delay visiting your Dad and let the facility handle things and call you once a week. You also need quiet time to yourself to recharge. I would go to a book store that had a coffee shop. Just a few hours with no demands work wonders. Caregiving burnout is real.