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Not sure what category to post this in. I'm not my mom's caregiver and she doesn't have a caregiver. But I made a promise to her to help her one day a week with having groceries and other supplies delivered to her, etc. I've been doing this for her every Thursday, and if that were only way I was helping I think it might be OK for me.


However, I feel like I must be available to my mom on a spontaneous basis for her urgent health-related needs, and I feel like I have no choice because I don't want her to go without help, and apparently she has nobody else she trusts to help her when these situations occur. I'm not OK with the situation at all but not sure what to do.

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Aba, welcome!

You are wise to "look before you leap" into becoming you mom's one and only source of support.

Can you tell us why she needs support with her health care needs? Is she very old, physically frail or having mobility issues?

Is the urgency of these needs a new thing?
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abacadacar Mar 2021
Thanks. She's 81, has rheumatoid arthritis, uses a walker, and drives when she is able.

As far as the urgency, well for example, today my mom was having a painful acute digestive tract issue and her doctor advised her to stay home and get some over-the-counter items from the pharmacy to help her symptoms over the weekend, and scheduled a nurse to visit her on Monday. My mom called me and told me what she needed and I had the items delivered to her.
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So: you take your mother supplies once a week, and you're happy to do that, and it works well for her too. Sounds good!

But then there are the "urgent health-related needs" which require someone (currently only you will do) to go with her... where? Or else... what might happen? - what does she need help with? And how often is this happening, on average?

PS, sorry, I see - by go without help, you mean not have any help when she needs it rather than go to a particular place; got it now!

So you're contemplating the probability that your mother will need support more frequently as she continues to age, and worrying that this might snowball on you? You are wise to look ahead. She already has what sounds like a good, responsive family doctor, and a prompt visiting nurse; so you already know that if anything serious needs attention it will get it. That's some consolation.

Then, taking the need to collect otc remedies from the pharmacist: a well-stocked household medicine cabinet can avoid situations like this, as long as you're confident she is able to read labels and follow directions responsibly. So that's only a matter of planning, really.

Then, looking around, who else is there for your mother to call on for small emergencies? What sort of community does she live in? - town or rural, is she well-established there with her neighbours, or a comparatively new arrival?
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That is great that you were able to have the items delivered! I'm glad that mom lives in a place where pharmacy delivery is avaiable; my mom did not.

Is mom not able to call the pharmacy herself to arrange for that? What I'm wondering is, does your mom panic overly small "bumps" in the road and become unable to figure out solutions on her own? And so calls you to solve?

That is precisely what started happening with my mom when she was 88 or so. It took us a loooooooong time to figure out, but in the end, it turned out she'd had a stroke which had shaply diminished her reasoning abilities. Because we all worked, we rxplained to her that frequently needing to respond to these "emergencies" during the work didn't work for us, and that she would need to move into a facility with staff to attend to her needs (we tried round the clock aides- they made her nervous).
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Yes, why could Mom not have called the pharmacy and ordered the items and have them delivered? Or even the doctors office? Most of our Drs. call in our prescriptions then we just pick up.

If Caregiving is not your thing and being at Moms beck and call is not your thing, you may want to have "the talk" with Mom. The talk being that helping her once a week is all your willing to do. Anything else she needs to take care of herself. When she feels she needs someone to help her around the house, she will need to hire them. Take advantage of resources provided in your County. If it gets where she feels she needs more help, then maybe its time for Assisted Living. That you do not plan on being her Caregiver. She needs to plan for her future needs.

I have a feeling there is something going on between u and Mom. That you don't want to be any closer than ur now. That's OK. But you need to make Mom understand what you are willing and not willing to do.
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My mom ended up in the hospital the next day after I posted my original message and she has been there until today and they are releasing her to a rehab facility today.

Last time this happened was 6 years ago and my dad (in the last year of his life as a late stage cancer patient) went to the rehab facility the next day and brought my mom home to stay with him so she wouldn't have to stay there.

This time I don't know what's going to happen. Maybe she will be able to get stronger after a week or two and they will let her go home. But last time she was at that facility she wasn't very comfortable there. I can understand. But I have my own issues I'm dealing with and I really can't become her caregiver.
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Geaton777 Mar 2021
I'm sorry to hear she had to go to the hospital. Did she fall and then someone called 911? Or something else? I think Medicare pays for a 21-day stay in rehab after a 3-day hospitalization (no exactly sure). She may be able to check herself out but please discourage her from doing this. EVERYONE is uncomfortable at the hospital/rehab... it's not home! She will need to do the PT and won't do it on her own at home, then this problem will most likely repeat itself until in a crisis you will be frantically figuring out where she can go. If you are not her PoA, this will be a problem as you won't be able to advocate legally for her and help her make clear-headed decisions about next steps. Tell her that in order for you to fully help her you need to be her durable PoA. Then make it happen. If she's in rehab you at least will have time to figure out what is best for her: going home (and finding/paying for aids) or making the move to AL (researching/paying for). It's best to not make decisions in a crisis and if she goes to rehab you have a "golden" opportunity of time to get some things figured out for her. I wish you all the best!
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You know that you do not wish to be a full time caregiver so stick with your plan of helping on your terms.

Speak to a social worker about helping you work out a care plan for her.

How old is your mom? Do you feel like she will need to be placed in a facility permanently?

Do not feel guilty if she needs to be in assisted living or a nursing home.
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Just because she is not comfortable at rehab doesn't mean you have to find a solution to make her happy. She is there for a reason. Have you tried saying NO to the sillier requests? Tell her that will have to wait until your scheduled visit.

My father would screw up his remote and demand I leave work to fix it for him. No, he was going to have to wait until I had planned to visit. What was he going to do? He didn't like my suggestion that he watch the tv in the bedroom. My second solution was to write out the directions to reprogram the remote in very large print. He liked that even less.

Quite frankly they get a certain pleasure out of seeing us jump when they snap.
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Just saw your update. Speak now with the social worker and/or discharge planner at the rehab place. Let them know what’s been going on with the needs you’re not able to handle. Tell this person that mom needs either in home help or moving to where consistent help is available. Make it clear that you’re not the plan! And if mom comes home without help, resisting all other solutions, don’t start a pattern of you being the answer
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I am so sorry your mom is ill. What caused her hospitalization?
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Sorry to hear Mom is in the hospital. I suggest that when she goes to rehab that you have her evaluated for 24/7 care. If found that this is what she needs maybe you can have her transitioned to LTC or to an AL. AL will need to be private pay unless Medicaid in your state pays for it. If she has no money, then it will be LTC with Medicaid and her SS/pension paying for her care.
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OP here with an update. Thanks again for all the replies and sorry I've been slow to post an update. My mom ended up staying in the hospital a bit longer and was transferred to rehab a few days before Easter. They are planning on releasing her to go home already on the 13th. I like the place she is at, it seems like a good place and apparently they have her in a program of various evaluations and physical therapies, and the primary case manager there is very nice.

My mom said she talked to her doctor on the phone who told her she needed someone at home with her to give her her medication and she didn't like that idea. She doesn't want someone at her home with her 24/7. But she also seems to indicate that she still can't get out of bed yet without assistance. (I'll need to get an update on that today.)

It has been made known to the case manager at rehab that I'm not personally going to be my mom's caregiver. However, it does seem that it's on me to help coordinate her home care before she is released, and I haven't been informed as to exactly what her needs are yet. Apparently they are in the process of accessing her needs, and I'm going to try to get an update and more clarification on that today. Should the case manager be able to clarify for me whether my mom needs a 24/7 attendant, or just a caregiver 4 hours a day, and whether she also needs a skilled nurse (RN) to visit and how often?
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CTTN55 Apr 2021
" She's 81, has rheumatoid arthritis, uses a walker, and drives when she is able."

How is her mind? I don't see any mention of dementia.

I'd be very concerned about mission creep in your case. It sounds like your mother isn't going to agree to having any help. Hasn't this already happened?

Now is the time to set very firm boundaries.

Please keep us updated about what the case manager says about what kind of assistance your mother will need.
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Be very firm that you personally will not be her caregiver. That she has made it plain that she wants no one in her home. And by law, you cannot make her do anything she does not want to do and you are not stressing yourself out trying.

You need to know Moms finances. Can she afford to pay aides? The SW can suggest 4 hrs, 8 hrs but if the money is not there its not there. So your other option is in home Medicaid. But then she needs to fit a certain criteria for that. You need to know her monthly income. You also need to be firm in that you cannot afford personally for in home care, if this is the case. I may ask that they evaluate Moms home. You maybe able to declare an "unsafe discharge". You cannot be made to take on the roll of Caregiver or pay for her care if u can't afford it.

Do you have POA if not, do you want it? If its found that Mom needs 24/7 care, you may want to allow the State to take over. They will get her services much faster than you can. I sense there is a very good reason why you don't want to get more involved with Mom than you are. I already see that Mom is stubborn and wants it her way.
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abacadacar Apr 2021
Thanks very much for that info.
Not really an answer to your question, but I have noticed that when I'm involved in helping my mom with something she needs help with, if she's not in any discomfort or distress, she is very sweet and kind and can focus easily. But if she is in pain or discomfort or distress what she will do is start talking a for a good long while about everything under the sun except for the thing I'm trying to focus on helping her with. Then once she has said all of that, she will say she is too tired and in too much pain to focus on what I'm trying to help with and then nothing gets done. This has been going on for the past 3 years at least. This happened today when I was trying to help her choosing the caregiver.
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OP Update. I heard back from the case manager, and she says she is checking with the physical therapist and occupational therapist on what exactly my mom will need help with upon discharge. And apparently there's an attending physician there who returns Monday.

What I'm working on right now is deciding on which caregiver service to recommend that my mom hire. I have it narrowed down to 2 or 3, but could use some guidance in what to look for. (I can start a separate thread on this if this is getting too far off topic.) One in particular, 24 Hour Home Care, has very good reviews on both Google and Yelp and the website has more actual information than most. My other main choice would be JFS Care (Jewish Family Services).
Another one, Arosa Care, says they assign a personal case manager. I don't know if that would be helpful in my case or not. Thanks again.
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CTTN55 Apr 2021
Here's what concerns me:

" I feel like I must be available to my mom on a spontaneous basis for her urgent health-related needs, and I feel like I have no choice because I don't want her to go without help, and apparently she has nobody else she trusts to help her when these situations occur."

What if she doesn't trust the caregivers? Does your mother legally make her own decisions? Is she participating in these discussions re discharge? If your mother is paying (and she should be!), is she aware of what the caregivers will cost? And is she okay with it?

What happens if she summarily dismisses caregivers and refuses to let them into the house? Then what?
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@CTTN55 (there's no "reply" button, so just typing my answer here)

"What if she doesn't trust the caregivers?"
Well, if she doesn't like the first caregivers, then maybe she'll need to find others. We discussed this today.

"Does your mother legally make her own decisions?"
Yes.

"Is she participating in these discussions re discharge?"
Yes.

"If your mother is paying (and she should be!), is she aware of what the caregivers will cost? And is she okay with it?"
Yes, we are discussing the costs as we get this information from the caregivers and there is no expectation that I would be paying for any of it. She knows she is paying.

"What happens if she summarily dismisses caregivers and refuses to let them into the house? Then what?"

It's for sure a concern. I often end up feeling like her situation is my fault because it's unfair to her somehow.

She said today that she would prefer we were living together or that I was doing the caregiving personally because I'm family as opposed to a stranger. At that point I made it clear to her that I personally will not be her caregiver, and that I will not live with her, and that things need to return to me helping just one day a week. She then said she never had any expectation that I would actually do that, "why in the world would I ever think you would". Just that it was her "preference".

If she summarily dismisses the help she is hiring and is back on her own, I'm probably back in the same boat again of worrying and feeling her situation is my fault. So this is what I've been struggling with. Seems like a common thread (literally) on this forum. So I'm glad I found this forum and it's been indispensable to me to learn there are others in my situation.
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Just read the reply that Dr recommends Mom have someone in her home to help with her meds. Be aware that aides are not medically trained. That they cannot dispense medications. They cannot hand them to Mom. They can only remind her to take them. So, you will probably need to do a pill planner. Then the aide hands it to Mom and Mom takes the pills in the time slot. At Moms AL, there were medtechs but not sure if agencies have them.
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abacadacar Apr 2021
Right. Yes, thank you, I do understand that limitation on the caregivers that they are not allowed to fill pill dispensers or hand medications to my Mom, only reminders. Not sure if my Mom understands, so I'll explain that to her tomorrow. Tomorrow (Monday) is the "caregiver training" and Tuesday is her discharge to go home. I have arranged for a caregiver to be at rehab for both dates and then to continue daily at her home after that. Presumably she will get strong enough to not need the daily caregiver at some point, but right now she is weak.

The rehab physical therapist's assessment said my Mom is not currently able to do a lot of out-of-bed activities without getting dizzy or having pain, but that they do not recommend a 24/7 attendant, just someone during the day.

PT states that my Mom is "able to walk on her own, stand on her own, and transfer from the bed to a different surface with the therapist only being by her side for safety". PT states "at times we provide some steadying assist" and that my Mom has been dizzy lately and has visual deficits due to cataracts and damage from shingles. PT states my Mom "overall is capable of moving, getting in/out of bed on her own, and walking on her own. She just needs someone nearby for safety to decrease her risk of falling within the home".

In regards to my original topic... I'm really wanting to learn more about how others deal with the issue of a parent who seems to expect their only child to be monitoring their eMail inbox and phone for urgent messages from Mom, and available to respond at a moments notice. Prior to a few years ago, I never had this sort of relationship with my Mom. It started when my Mom started telling me about her health issues and accidents and I started feeling like I had no choice but to monitor her in this manner.
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It's important that you work NOW at getting mom used to leaning on paid CG's as she will otherwise lean on you and slowly, but surely, you'll find yourself going to her house every single day with some need, small or large.

Be aware that she very well may 'fire' a few CG's before she finds one that clicks with her.

Mom needs to be aware that she needs to make some adjustments in her thinking and accpe this help. She needs to know that under NO circumstances will you be moving in with her or vice versa and you will not be her FT CG.

Hopefully she has enough 'common sense' left that she will accept the CG's and do well and you can quit worrying.
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