My mom has advanced dementia along with osteoporosis, and severe right hip arthritis along with a lot arthritis in her body. Some days I wonder if she may also have lewy body dementia cause she has a lot of muscles stiffness when you touch or try to help her to move. She walks with a traditional walker. We have an appointment for a wheelchair evaluation in March. I am NOT looking forward to that cause I feel like the wheelchair would just signify that things are further declining. Her past OT and PT thinks she needs a customized wheelchair. Her physiatrist (rehab health doctor) thinks a regular one. I do not have a SUV. do not know where the chair would go. They are heavy. They do not want her in a transport chair. I recently bought on in the summer and showed the OT. She laughed and told me to return it. I told it would solely be for appointments that are further away with more walking distances. It is getting harder to get from point A to B. My dad is useless as all he does is complain about that fact he would have to drive and drop us off to our destination. Plus it is very hard even with a step stool to get her into a SUV. I have a lower to the ground vehicle that is a sports car and not much room for more than 2 people. So it is only us 2 when we go to appointments. I have 2 older sisters who have helped a ZERO amount of time. When do I bring in home health?
She needs telehealth visits, in-home visits, or she needs to be assessed for LTC in a good facility, which can be covered by Medicaid if/when she qualifies. If doctors are saying she needs a wheelchair, then she is probably a good candidate for LTC.
There is no reason to wait for this. She will only continue to decline and your workload will increase. Research a good, reputable facility that has Medicaid beds and also offers hospice services. You may need to consult with an elder law attorney or Medicaid planner about filling out the app when she still shares assets with a living spouse. When she is about 4 months away from running out of her share of cash, then you apply. There'll be no change in her care in the facility.
Or, you resign yourself to taking her to doctors using a medical transport service, which is pricey. I also have arthritis. It is not life-threatening or life-shortening but it is painful. She needs palliative care for her pain. I would not spend any effort on injections or therapy, just pain relief.
Please find healthy boundaries for you so that you don't burn yourself out. I'm hoping you are her PoA so that you can actually make these decisions for her. If it's your Dad, then he needs to step up to the plate.
With home health, you’ll still have too much to manage, especially with dad and sisters being little help. Time to face up to reality, and I wish you good luck as you find the right plan for ALL of you, not just mom.
Frankly, however, why All The pt and ot for an advanced dementia patient? Why all the doctors? Besides the dementia, the osteoarthritis has her in chronic pain that docs these days won’t prescribe actual painkillers for. Ya, her stiffening when u try to move her sounds like chronic pain.
Hospice will at least give opiate pain meds plus Ativan versus snake oil antidepressants and new age teachings about accepting pain as a sign of character or stupid pts like mine who said I needed to touch grass when I needed a hip replacement. Forego all that. Hospice will supply the drugs that actually work as well as durable medical equipment like wheelchairs.
hospice/ palliative care has come a LONG way. Use it to your benefit.
If she doesn't meet their requirements, they should at least be able to point you in a direction that would assist you better with these appointments.
They will supply the wheelchair and other needs at no cost to her as Medicare pays all charges related to hospice care. Maybe getting a chair triggers the realization that decline is present but the most important thing is comfort and ability to get around at least some.
Dementia is a qualifying factor for hospice so its best to have them come to the house and do the evaluation rather than depending on numerous opinions about what does or does not qualify.
The time I had getting her in the car. She's heavy, but looks like a toothpick. Everything hurt when I tried to move her legs and feet inside the car.
Also, let's not ignore the pity stares she was getting from people outside. She could barely walk. A nurses aid came out with a wheel chair for her. She refused it. They demanded she get in the wheel chair so that they could start quickly, as she was moving so slowly.
I told my friend about how they were staring at my aunt with such pity and I could see she was getting angry about it. My friend said they were probably staring wondering why she was still out and about and not at some nursing facility where she belongs. Which I'm sure my friend was right.
They then made another appointment with her for a follow up. By then, I went home and my cousin had taken her.
But I agree, all of the doctor appointments, at what point is enough? I took her to two and it was torture because she can barely walk, yet alone, she lied to doctors. She currently uses a walker.
After witnessing all of this, I fear there are no answers. I know I truly tried to get my aunt into a nice facility. We showed her doctor pictures of the condition of her house, he said she clearly wasn't in her right mind, but he only revoked her drivers license. He wanted to schedule her for more tests, but she refused to go and since I do not live near her, that was the end of that. My family who live closer to her just does what she says.
I wish you all the best with your mom. All of the suggestions given will be great ideas, but it's hard convincing the elder. They will not go down without a fight and it will wear you down to your soul.
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