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She has been living with me for 30 years. She knows who I am 90 percent of the time, is still eating, sleeps 22 hours of the day - I wake her to eat and use the bathroom. She has severe arthritis and is incontinent. I have to lift her out of bed and hold her as she shuffles with her walker, remove her disposable underwear and get her on the toilet etc. She is still eating well.


Is this too soon for hospice? She says she wants to stay with me but my family is concerned it is taking a toll on my health - both physically and mentally. I feel such huge guilt and it is killing me to think of her leaving.


Any advice is appreciated greatly!

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HI, I admire you as a son to be caring for your mom.
She certainly raised you well! I am my 95 year old mother's caregiver and we share an apartment together. She has dementia and her primary care doctor had recommended hospice several times throughout the years. I knew that hospice is the final stage of life. As of recent her blood test was excellent on all accounts so the doctor told me she changed her mind about hospice for my mother. if your mom is sleeping 22? hours everyday because of her arthritis perhaps you could try to wake her up earlier and feed her. Does she go right back to bed once she finishes her meal? You could ask her to sit a while in a chair, watch TV or whatever. I don't have a routine for my mother. I just let her do what she wants basically. She too would sleep as long as I let her but I made a rule that I get her up by 12pm everyday. She has sleep problems at night and has come into my room at 3am asking questions like is dinner time yet? Lol. But I can tell you I will not ask for hospice unless she is incoherent or combative I know its extremely challenging setting your schedule around your mother's sleep habits but I look at it in this way....you have more time for yourself while she is sleeping. Good luck and God bless you
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Reply to Artist69
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If she is sleeping 20 some hours a day, I doubt she needs heavy duty pain meds that would only sedate her and make her less alert... and are also constipating. The Dr. can (and likely will, or perhaps already has) prescribe an anti-inflammatory medication that will help the arthritis without making her want to sleep more. Ask him about "rub on" topical pain relief as well.
Do consider hospice. At her age, with her life expectancy, there are usually enough medical reasons for her to qualify. They will evaluate her and know what devices will be best helping with her mobility. They will be able to order whatever she needs.

Most of all, YOU need some relief from her constant care needs. They can send someone to help with bathing etc. They are experts when it comes to home care and they can help you deal with the stress you are under. You've done a great job with her. Every mother should have a son like you!
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Reply to Dosmo13
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While I know you are concerned that a narcotic will make her more wobbly, that's not necessarily the case. They can start on a low dose and increase it gradually if needed. If she has a long-acting narcotic, the effects, both pain-relieving and negative (if any) will be spread out over time. I'm a chronic pain patient, so I'm always on a low-level narcotic and occasionally need Percocet. One option for your mother might be a fentanyl patch, which is changed every 3 days. Fentanyl is very addicting, but even if she wanted to, she wouldn't be able to give it to herself. At a low dose, she would probably not become physically dependent (not the same as addicted), but the chances of addiction are very slim, since she won't be dispensing it to herself. If it's handled carefully, I think there should be few narcotic side effects that make her more wobbly. More likely, she'll develop constipation, but there are ways to handle it.
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Reply to caroli1
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If she's in pain from her arthritis and that's affecting her mobility, then she needs pain relief. I wouldn't second guess her doctors on that, always provided they are taking into account her age, weight and known health conditions.

If morphine-family painkillers are no good to her and she isn't able to tolerate NSAIDs (aspirin and its relatives, including ibuprofen), then she might still benefit safely from some of the pain-relieving gels.

Lifting her out of the bed is dangerous for both of you, I repeat. If you slip a disc in mid-lift, you will both end up on the floor. Get advice - preferably including someone to show you how it's done, then to watch you doing it - and get the right tools for the job. As an example (this may or may not apply) look up "transfer boards" and see how a person can slide across from her bed to a commode for toileting. Helping somebody to mobilise safely is like almost everything in life: easy when you know how.

As for the agency workers... Even if you had the same worker every day, it still isn't realistic to suppose that that worker only ever visits your home; and Covid is a concern to all of us. If it might help set your mind at rest, why not ask the agency what their infection control procedures are?
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Reply to Countrymouse
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Guilt? Why? You’ve done nothing wrong!

Having hospice step in is hardly giving up on Mom. Nor does it mean you failed her. Far from it!
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Reply to LoopyLoo
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Oh, what an opportunity! Please do it; this could go on and on.....
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Reply to mally1
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Please call hospice. Of course you love her dearly but you can’t do everything for your mom by yourself.

Best wishes to you and your family.
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Reply to NeedHelpWithMom
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Never too soon to contact Hospice. They will let you know if she is eligible.
With Hospice you will get all the supplies and the equipment you need to care for her safely.
If she can stand a bit, has strength in her legs and can hold on a Sit-to-Stand would help or a Hoyer Lift if she can not support her own weight.
A Hospital bed with a good mattress that can help lessen the likelihood of pressure sores. And the support of a Nurse that will come weekly and a CNA that will come a few times a week. And you can also ask for a Volunteer that can come sit with mom while you run to the store or get some errands done.
They will make your life so much easier.
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Reply to Grandma1954
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Steven3 Oct 25, 2020
Thank you so much. I also babysit my granddaughter daily and we are worried about Covid having people in the house...it is a bit overwhelming right now.
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Steven, you don't give your location so we can't look them up for you, but if you search "Area Agency on Aging" with the name of your state and/or county you should find a useful source of advice about services and support near you.

Two quick points:

a bedside commode would save accidents, giving your mother less distance when she needs to "go."

you shouldn't be lifting her bodily off the bed, I hope you aren't doing that? It isn't safe for either of you. There are - dozens! - of different ways of helping someone with arthritis to mobilise, and if the Area Agency can't point you to an occupational therapy service or similar maybe your mother's PCP can.

Arthritis and incontinence on their own wouldn't seem to make her eligible for hospice, but take advice on that; and in any case even if hospice isn't the right answer that doesn't mean you should just carry on regardless. Your mother and you both deserve more support, and it is out there. It's a matter of finding the right sort :)
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Reply to Countrymouse
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Steven3 Oct 25, 2020
I have been in touch with our local support agency...they can send in a personal support worker to help bathe her etc. but you get a different person each time and with Covid that is a concern. The nurse they sent suggested a narcotic pain killer but I know that will make her mobility worse, she will be groggy and this will increase the chances of falling. It is hard enough for me to lift her (yes I am lifting her off the bed currently unfortunatley) now, never mind if she is more groggy. She calls out for me every 2 - 3 minutes when she first goes to bed (after meals or at night) and this lasts about half an hour. Same thing periodically during the day. I go to her but she just closes her eyes. The doctor recommended a sleeping pill for her which was a disaster - knocked her out to the point she was "jelly" during the day and could not make any attempt to stand up. I stopped them immediately. Now the agency is saying she should move to a Hospice residence. I know it would be easier for me in one way ( I am exhausted) but I am having an extremely difficult time letting her go - I can't imagine her not being here with me and I am worried she will be afraid if I am not there. Huge guilt, huge worry...and I need to make this decision immediatly or will lose the available bed.
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