I am on my fifth full day of taking care of Mom 24/7 at home and I'm already coming to the conclusion that one person can't do this alone. Does anyone have thoughts or advice?

Just a thought: when they say "Whatever you need, just ask", answer "What I need are daily calls so that we can talk and coordinate our mother's needs." "That is what I need." They can offer time or money. Another thought: don't wait for them offer. Ask.

Hi Carla, I'm so sorry you're struggling right now.

When my husband and I first decided to start dating, one of the first things he felt was important to set straight right from the start was....
"I'm not a mind reader., You must tell me what you, want, think and need."
Since then I keep that in mind when dealing with others as well. Saves me lots of inner frustrations and silent resentments.

My Mom is on hospice also. They have a volunteer program for respice. Does yours provide this service?

You and Mom are in my thoughts and prayers. Thank you for being here for us💖🌹

Carla, you have been a great help to so many of us here with your kind and thoughtful advice. I’m sorry you’re in this situation with Mom. To need to pass on a mini family reunion because she can’t be left alone stinks. Even the help you do have is temporary at best.

What are the chances of home health care coming out? I hear they’ll give you 30 hours a week. And, what about a facility? I know that for some families and their loved ones, “placement” is a dirty word. It’s just upsetting when I read someone I admire is having such a hard time. Sending hugs.

Carla, being frank, I can tell the difference in your outlook from the last time you posted, and you're clearly overwhelmed. But you probably recognize that yourself. I'm being blunt because I want to see you getting help, and it's hard to do when you're literally burning the 24 hour candle.

I think what I would do is take a few minutes whenever you think of something you need, and create a checklist, prioritized if appropriate. Indicate what only you can do, and what can be done by others.

When folks call to ask what they can do, tell them about the checklist, available if they want to stop by. Or you can e-mail it. Hopefully they'll choose something and follow through.

I created a shopping list for Dad, by category and the brand he preferred to give to folks who offered to shop. All they had to do was take the list, with items checked off, and get them.

What kind of errands need to be done, and who can do those? Neighbors? Friends?

Walking the dog: neighborhood kids? Local Scout troop? Or search for a local dog walker; my sister used to do this in her spare time, and got paid for it by her clients. Unless it's a break for you, someone else can do it.

Perhaps you can capitalize on the offers to volunteer and turn them into social activities. Exercise - perhaps a few minutes at a time. Recreation is harder unless you can treat visitors as recreation. Someone can watch Mom while you take a walk.

One thing I did when I knew Dad was near the end was to make the hard decision to let everything go until it was all over. Other than eating, laundry, dishes, an occasional vacuuming, and immediate financial issues, everything else was just postponed. But Dad was in a facility for rehab, stayed through palliative care and until the end. Still, I had his house and mine and needed to keep checking his for security issues.

I think the best decision I made though was to keep him at the facility and not try to bring him home, despite the fact that he had earlier repeatedly stated he wanted to die at home. There's just no way I could care for him 24/7.

I think that's the big decision that you'll face, i.e., who else can you bring in to help? I got a private duty firm in a few days; I wasn't pleased with 2 of the workers, but one was a gem. Still, I had trouble letting go and felt I needed to be there until things got settled (which didn't happen b/c he decompensated after release from the hospital).

What really helped me is to admit that I couldn't handle the situation, and that I would rely on help. That was a major issue for me. Kindly stated, I see that you're facing a similar dilemma. That's why it's important to accept that others can do for you what you're doing now.

As to the dinner arrangements, why doesn't one of the local siblings stay with Mom so you can go out to dinner? Even if you're tired, the break would be a tremendous relief. That's what I started doing after Dad went on PC. I stopped at a restaurant to destress, and it really helped.
I wish I could think of something insightful, but 24/7 care of a dying person at home, w/only hospice's limited involvement, is a challenge that is difficult to meet.


Edited to add: I see CW and I were posting at the same time, and along the same line.

Could you investigate hospice in a hospice facility? The one my dad was in was just beautiful. I thought it was a much less stressful experience and gave our family a lot more opportunities for quality time with him. It was easier to just be his wife, sons and daughters and not his primary caregivers.

Carla, you're not alone. I am in the same boat. When I do have a nurse to watch mom I'm so frantic about getting all the errands done it's not even enjoyable. The advice I have seen is to order groceries, household items online as much as possible and have it delivered to the house. Also, I hired an independent nurse and a nurse from an agency to come in twice a week for a total of about 6 hours a week. That helps, I try to arrange social stuff or just getting out for a walk in a pretty park for those times. If siblings are willing to help "babysit", take advantage of that. My brother will, on occasion, sit with my mom on a Saturday so I have a bigger chunk of time away.

My mother only has maybe a few weeks to live. I couldn't get a facility placement in that time period (or pay for it). Hospice comes out if you need something that they can't handle over the phone. The nurse came out once this week and the bath aide three times. Unfortunately, I'm the one who has to coordinate with them while they're here and work with them, and ask my questions and absorb the information they provide, so I can't really step out while they're here. Plus I have to sign all the paperwork since Mom can't.

People are willing to help, but aside from me, they're all trying to carry on their regular schedules while doing it. And they don't realize that an few hours here and there when it's convenient for them is just not enough to enable me to continue this over the longer term. Several people have said to me "Whatever you need, just ask". But I need them to call every day and say "What do you need today? Is there anything I can help with today?" Of course that's not what anyone says. I'm frustrated that nobody seems to understand this, but of course you don't understand unless you've been there yourself. Sigh...

Oh Carla, I'm very sorry you are going through this. I understand from the time my mom was living with me how hard the lack of sleep is, and feeling like you're running on fumes.

Could you hire an aide to care for mom overnight so you can sleep? Maybe like the 7-7 or even 11-7 shift? It seems like that might really help if there is the means available to do that, even if it has to be just a few days a week.

Hugs to you. I hope you're able to get some relief.

Another thought; why can't the siblings, locally or out of town, do the checking for you - i.e., what other services might be available? They can interview potential private duty candidates, summarize the info and let you decide. They can contact local Scout troops, churches or neighbors to coordinate for you, if you just give them some guidelines.

Update to my earlier comments and tale of woe about not having enough help. I texted my sister in Maryland and asked her if she could come help me. She's flying in tonight. I don't know how long she can stay but even a few days will be a godsend. I'm afraid the locals (especially my one local sister) may feel it reflects badly on them to call in someone from out of state, but I can't concern myself with that. Last night when I needed help changing my mother after a BM my sister was out playing trivia with her friends and with her cellphone turned off, as per trivia rules. That was the last straw for me. Thankfully I will have some help who's actually here (staying in Mom's bedroom since Mom is using the hospital bed in the living room), even if she can't stay long.