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It's not that I don't have help - I do. It's just that every time I have someone else take over for an hour or two, there seem to be 6-8 hours worth of activities that I need to squeeze into that hour or two. Like sleeping, food shopping, errands, walking the dog, social activities, exercise and other recreation.

My brother and his wife flew into town today to spend a little time with my mother while they still can. They would like to take the local siblings out to dinner tonight. No, I can't leave Mom, and I'm too exhausted at this point to go out anywhere, even with my brother who's in town for one day. My dog is getting very short walks and I'm picking up only the bare essentials at the closest supermarket and rushing home to relieve whoever is sitting with Mom while I go out.

I told my sister on the phone today that if this goes on much longer, I will need more help, especially at night because I'm getting up with Mom so often in the night that my sleep is totally fractured. She offered to stay over three nights from now and take care of Mom so I can sleep through the night. And hopefully watch the late news with the sound on, which I haven't been able to do in many days since I can't have the tv drowning out Mom's call.

I'm sure many of you have been through this and have lots of thoughts or advice so please don't hesitate to share. I'm all ears!

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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.
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Reply to Marcia7321
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Either the computer gremlins are busying stealing my posts again or I'm suffering from heat induced mental confusion, but somehow my post just disappeared.

I wanted to thank you for providing an update. I'm also relieved that you'll be getting some help from your MD sister.

It's sad that the local sister is busy with games, but sometimes that's the situation (as many of us here have experienced). If she ever needs help, make sure your phone is turned off as well!

I hope you and your MD sister have time for some relaxation together, even just taking time to have some cool refreshments, and just chat, sister to sister.

Thank you for taking the time to update us.
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Reply to GardenArtist
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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.
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Reply to CarlaCB
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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.
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Reply to GardenArtist
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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.
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I hate to add one more task to your day but I think you should make a list of all the things you need as they occur to you and keep it by the phone. The next time someone asks "how are you doing" or "what can I do" you can reply with something from your list. And don't be afraid to be specific - "I don't even have the energy to make a meal, could you pick up a sub? And last time it got soggy by the time I had time to eat it so could you ask for no sauce and the veggies on the side?"
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Unfortunately, my mother lives in an area where there aren't a great amount of services, and I honestly have not had time to check out what there is because she only became bedridden and 24/7 care in the past week. I know that her hospice does have volunteers but I haven't explored that yet. The social worker was supposed to visit this week but had an emergency and cancelled. I suppose that's the person to ask about services like that.

I don't know of any grocery stores around here that deliver, and unfortunately I've never been a pre-planning sort of person. I'm the sort that says "Oh, I'm out of wine - let me run out and get some." This is the first time I'm so constrained when it comes to leaving the house that I really need to think ahead, and I'm just not good at it yet.

I just got a call from my mother's prior housemate and caregiver, checking in to see how it's going. Honestly, I expected her to be much more involved than she is, but I don't want to make demands on her or make her feel guilty for not offering more help.

My only local sister is right now hosting my out of state brother so she won't be available until they go home. This annoys me but again, I don't feel I have the right to tell other people how to set their priorities.

My brother in law has been great with offering help, yet he too is trying to go about his normal life at the same time. He said he was getting me a sub for dinner, but he brought it at 1 pm so by dinner it was a soggy mess. He agreed to sit with Mom for an hour while I went to the store, but he came in talking on his cell phone and sat down having a call ON THE SPEAKERPHONE while my mother is lying there in a hospital bed. I asked him to please turn off the speaker, rather curtly I'm afraid. He's a great guy but basic etiquette doesn't fly out the window when someone's dying.

Okay enough grousing. I'm sure many of you have similar complaints and all of you get my point.
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Reply to CarlaCB
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Carla do you live in an area that has a variety of services? Is there more than one hospice organization? Not all are created equal! If there are other hospice services call around and see what they offer. You can get mom transferred to another hospice if you find a better one. Before I signed a friend onto hospice, I called EVERY hospice serving her area. WOW what a difference in offerings. (Most in my locale send an aide for 2 hours a day, five days a week).
Our Visiting Nurses Assoc coordinates volunteer grocery shoppers as well as friendly visitors. Many supermarkets have home shopping services that either delivers your order or has it all bagged and ready for you to pick up at a side door. Then there is always Amazon and their connection to Whole foods for delivery! Can you ask someone who offers help--- to do grocery shopping for you? Bring a prepared meal?
There are websites (caregiving.com and lotsahelpinghands.com) that allow you to post your needs and people sign up for the tasks they feel they can do. You could post things like - bring a meal ready to eat ; grocery shopping; 2 hour visit while You run errands, etc etc. Those not in the caregiving role can NEVER understand the toll. My friend's cousin thought she had the 'life of reilly' because she had 2 live in caregivers. With ALS, the caregivers prepared food and did laundry and meals. BUT someone had to help the ALS patient do paperwork, pay bills, get clothing organized, Wills, etc.
Speak with a social worker at your Mom's doctor's office to see what else might be available. Do it now before you crack!
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Reply to geewiz
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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💖🌹
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Reply to Pepsee
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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.
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Reply to GAinPA
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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.
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Reply to FrazzledMama
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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...
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Reply to CarlaCB
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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.
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Reply to kbuser
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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.
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