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?
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.
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.
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.
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.
After reading all the health concerns your mom has, have you considered a hospice evaluation?
As PeggySue writes, hospice will provide the proper medical equipment and proper medication. And transporting your mom to appointments will be eliminated.
However, as others have suggested, all of your mom's needs will be met in a facility, 24 hours a day.
I hope you can find what best suits you and your family. This is not an easy situation for anyone.
I had to do this twice for my husband, over the last 10 years, and the chairs we received were uncomfortable, heavy and difficult for me to manage or put in the car. You have to practically dis-assemble the chair to transport it in a vehicle, or buy one of those racks you mount on the back of your car, lift it onto the rack, and tie it down. My husband was impatiently trying to get out of the car before I could re-assemble the chair to put him in. He can't stand or walk, and if he ended up on the pavement, I wouldn't be able to help him up.
The Best wheelchairs we have had have been the $300 version, simple, basic, folding for transport or storage, you can find online easily - (I like the Medline basic version, but you can look at the features which are best suited to her needs).
Second - (Sorry for my rant on the custom wheelchairs!)
When it is too difficult to get her to doctor appointments, Now is the time to bring in home health. Call the insurance provider and ask if they are contracted with any doctors who make house calls. If they can't help you, do a Google search. If you can't find any local medical provider to make house calls, then see if you can schedule video visits with a doctor (or nurse).
Depending on where you live, you might be able to get medical transport services for her. They will only take her to medical appointments. We previously lived in a small town in Minnesota, and the Medical Transport van was so easy to schedule and use! We have since moved to Arizona, and everyone I've talked to says the Wheelchair transport vans have to be scheduled well in advance. I used to just put my husband in my Large car, fold up his wheelchair and put it in the backseat. That wasn't easy, but it was easier for me than trying to get it out of the trunk! A transport chair is lighter weight and folds down smaller.
She might benefit from a standard wheelchair to use in her home, and get a transport chair only for going out.
Doctors appointments can be restricted to only those that are absolutely necessary (an acute illness or infection). Even then I would explore whether you can access other options such as visiting nurses.
A wheelchair is for self-propulsion (with large rear wheels), built for daily, long-term use, with comfort features. A transport chair has four small wheels, is lightweight, folds compactly for portability, and must be pushed by a Caregiver, making it ideal for short trips and appointments.
The key difference is propulsion: wheelchairs allow independence (large wheels), while transport chairs require assistance (small wheels).
My MIL was in a wheelchair until she died, for over 20 years. It was extremely heavy and hard for her to move around her house, and her adult daughter was the one to constantly lift that heavy chair to put in her trunk. You seem to be in the same position, with no help and only hear complaining.
You need to start complaining who will lift that heavy wheelchair to put in the trunk? It's not a lightweight baby stroller! I would guess it weights 65+ pounds.
It may be a good idea to get a list of questions for the Evaluation...such as:
1. Does Mom have the upper body strength to push herself around in a standard wheelchair?
2. The wheelchair weight combined with hers will be exactly how much weight to push herself? Or I will likely be pushing?
3. You cannot bring a wheelchair along in your sports car. Why are they against a transfer chair, since it is lightweight and portable?
4. Will Mom be expected to push herself around inside her home all day in her chair? She has to avoid falling when getting up from it, say to use the bathroom.
6. Dad needs to know he will have to do some remodeling, such as widen doorways and install a home entry ramp. Remove dense carpeting and install hard surface floors, for ease of moving the wheelchair around.
7. Is Dad planning to learn how to help Mom transfer from the chair into the car without complaining? Is he strong enough to lift that heavy chair?
8. Isn't it a fall risk for Mom to get into a SUV/car by using a stepstool?
Forget about help from your sisters. As long as you do it all, they won't help. I'd be worried about trashing my back. I saw what my SIL went through with her Mom for 20 yrs. Her life became taking Mom everywhere constantly. Every outing was a major production. My FIL never spent a dime on making things easier, such as a wheelchair van with hydraulic lift. He grumbled enough having to buy her a wheelchair, add entry ramps and widen his doorways. My MIL became a prisoner in her home from the constant lack of cooperation.
Moving Mom from walker to wheelchair-bound will be expensive. You need to find local wheelchair transportation services, and not get stuck trashing your car and back with this situation. Places like Paratransit, Senior Shuttles, and ambulance companies provide these special services. You are obviously the unpaid slave for Mom's transportation already. You can get Telehealth Appts and not always have to drive her to various doctors. Nobody in the family should get saddled with this backbreaking task. Remind these Doctors about the huge costs involved, which they never consider. You have no help available and this big change in lifestyle will impact Mom's mobility forever.
This is your chance to withdraw from Mom's transportation situation. Find some local providers to get prices and schedules. Save your sanity and your back.
You got this! Best of luck!
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.
hospice/ palliative care has come a LONG way. Use it to your benefit.
For reference, my car is a Tesla Model 3.
Also, if you do have to use transport, which I have had to do before, her insurance may cover it. Someone will need to ride with her.
You bring in home health now if you can do it. And eventually you will bring in hospice, who will keep her home and you'll get most things she needs delivered or done in the house, including, by the way, an x-ray machine if necessary.
In the Bronx it is not possible to hire a medi-van unless you have Medicaid, which at the time he did not. When it got so bad that I could no longer safely bring him to his appointments, I no longer did. I cancelled all of them and just stopped. I decided if something bad happened, I'd call 911 and he'd go to the hospital.
I didn't know that his insurance might have covered transportation, I didn't know to ask. That's a good point.