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!
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
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!
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?
Having hospice step in is hardly giving up on Mom. Nor does it mean you failed her. Far from it!
Best wishes to you and your family.
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.
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 :)