Hi - this is my first post so please be gentle. Mom fell a few months ago, went to a rehab for 5 weeks, then a hospital for 10 days (she could not walk to get into the house due to fluid in her legs) and now another rehab. She's always been independent but now is struggling with mobility. She HATES having the adult briefs on and HATES the rehab. Before this she was living in an apartment we built in our basement for ease of living for her. She is 87 and was driving, shopping etc. before this.
She wants to come home but is not able to ambulate, toilet, shower etc. safely yet. Therapists said she is improving with exercises but she is afraid of falling again so she is hesitant. Also her joints have a lot of pain with arthritis.
She can't afford private pay home care and I don't know if Medicare or Medicaid would. Any advice or personal experience would be great thank you.
This is the challenge of older age. Either the brain or body (or both) start to wear out.
"She HATES having the adult briefs on and HATES the rehab".
Good. Anger is energy!
I've found when people feel strongly, when they HATE something, then can use this as motivation. (Way better than those who give up).
HATE for the idea of needing adult briefs? (I'm assuming incontinence underwear?) Maybe use that energy & redirect to pelvic floor exercises?? But realistically, at 87, many need a little protection in that area. If she has not needed them so far she is doing way better than most people! Not being able to get to a toilet in time is a 'functional' reason, rather than a bladder or brain issue (if that makes her feel better). Practical solutions include easy clothing (think skirt or trousers with elastic waist, no fiddly zips). Also discreet pads that can be replaced as needed during the day.
My slogan would be *Hey that's life. No biggie*.
HATE being in rehab? Redirect into energy towards achieving rehab goals. Towards GETTING OUT of rehab.
My slogan to Mom would be *Keep going. Keep up your good work!*
"Before this she was living in an apartment we built in our basement for ease of living for her".
So aim for home as first choice.
"She is 87 and was driving, shopping etc. before this."
It's a lot to lose right? No-one likes to lose things. I'd say if we can't - then what CAN we do?
Can't sail a yacht - CAN take a cruise..
Can't drive - CAN get a taxi?
Can't shop - CAN get groceries ordered & delivered?
Can't do everything we used to do.. but if she can arrange it, organise others to help her, then this is also still independent.
The pathways will become clearer once rehab progresses. Plan A: Home. Back to functioning independanly.
Plan B: Home + accepting home services.
If that is not available/affordable/accepted, that leaves Plan C: into supported accomodation.
This will be her challenge. To adapt her living arrangements to the reality of her needs.
Before being released, I made arrangements for a temporary ramp for our home (later a non-profit group built a nicer one), a walker, a wheel chair (which was used more later on), and a portable commode. Medicare covered most of the cost, including a set number of home PT visits. As time went on, it became clear we needed more assistance, so with the guidance of our County DSS and Office for the Aging, I submitted the application for her to be covered by Medicaid. Under our state's Medicaid Managed Long Term Care program, she became a "dual eligible" (Medicare-Medicaid recipient). Cost for pull-ups, absorbent pads (for bed and chairs), medication (co-pays, if any very low), and a weekly visit from a home health aide were now covered. As part of the process, a pooled trust was required, which allowed her Medicaid spend-down to be used for payment of selected monthly bills.
Having the assistance of Medicaid allowed me to concentrate on keeping my mom comfortable at home. As I have said on previous posts, being her caregiver was the most challenging (physically, mentally, and emotionally) job I have ever had. But it was the most rewarding. She lived to age 93. As you see by the responses already, there are many who understand your predicament. This was my journey. I wish you well with yours.
I bought handicap bars for the toilet area and a shower chair. We installed a hand held shower wand so that she could still take a shower. I took her home.
My Mom learned to go from one room to another via wheelchair (actually, it was a transport chair so it was lightweight and easy to move). We kept the legs off the wheelchair and she would move her feet against the floor which would move the wheelchair. (We had lots of wheelchair marks on the walls and cabinets from this.)
After 4 ER visits, a doctor finally told us that it was her arthritis that was the source of the pain (the clue was that her pain was NOT in the area of the surgery). They had assumed she knew this since they assumed that she had pain from arthritis before falling down. His parting words were "You need to go home and enjoy the rest of your life." (She was in so much pain, there was no enjoyment.)
After the knowledge that the problem was really arthritis, I concentrated on getting the pain down to a tolerable level. First off, I took her off of prescription pain meds. It turns out that her body was addicted to the pain meds, therefore the amount of meds that she was getting, no longer attacked the pain. I told her what I was going to do, to warn her about the change in pain level. In addition to going to OTC pain meds with assistance from doctor, I also started her on CBD pills (from hemp so no THC), which are known to help relieve arthritis pain. After about 2 weeks, the pain decreased and now she could concentrate on PT. To this day, 4 years later, she is on Tylenol and Alleve and CBD and the pain is reduced to a dull ache.
Once the pain was under control, we went to a PT person who had no idea what to do with an elderly 97 year old who had a crazy daughter who wanted this 97 year old to walk again (they don't teach you this in school.) I told him that I wanted him to do PT on my Mom as if she was a 2 year who couldn't walk. I was there for the entire PT visit. I asked a lot of questions about what each exercise did and why he did it. I also directed him to exercises that my Mom could do, and couldn't cheat on. I'm not sure if he was happy or annoyed that I was there. Each night, I did exercises with her. Within 4 weeks, my Mom was out of the wheelchair and was able to walk across the room. Within 8 weeks, she hardly used the wheelchair.
My Mom was a fall risk, so in the beginning, I was the only caregiver. However, soon, her behavior returned to the old behavior that annoyed me and I found abusive. So I interviewed with an agency and they provided people for 9 hours a day so that I could at least get some sleep. We removed ALL valuables from her house.
Now, I still put my Mom through a shortened version of these exercises, even though she is over 100 years old now. To get her to have confidence to not fall, in addition to the sit-to-stand, I bought a step board, and make her walk up and then down with her walker. For circulation (water retention), we use an exercycle with no tension.
Best wishes.
This is all sounding like a dire change for your Mom and I am concerned what doctors have told you about her prognosis going forward. It does sound now as though your Mom, at least for the present, needs 24/7 care, care that you may or may not be capable of physically and mentally. I wonder if you should not reach out to discharge planning as if in facility placement, at least for right now, might not be the only safe move? While Mom is in care at rehab or hospital the social workers can help you work out her assists, her abilities for self pay or application to medicaid. It is often the easier was to find admission into long term care.
I may be missing a whole lot here, that you can inform me of. Meanwhile let me say how sorry I am you are facing this. You have to be a bit in shock at the moment. I want to welcome you to the forum and let you know how sorry I am it is under these circumstances.
I may have my social worker/OT assist hat on but miss the obvious nursing/medical details.
Thanks as always Alva!
Here is why - while a lot of people that are motivated come home and do home PT and OT and get back to themselves. There are plenty that come home and if they are not anywhere close to their normal strength - they might do home PT and OT halfway - not do the exercises in between visits. And they start to lose the momentum they were gaining in Rehab. It hurts too much to do the exercises. And then it hurts too much when OT and PT are there. And contrary to popular belief- the OT and PT aren't going to make them do anything they tell them they "can't" do. Even if they they know they can. If they tell them they are hurting, they won't push them because there are liability issues. They just mark their tracking that the patient was in pain and unable to attempt the therapy.
That fear of falling - I get that. I think it is very normal - Especially when their entire life has been disrupted by a fall.
Right now she is where she can get constant attention, daily PT and OT. I know she wants to come home. My FIL has been in rehab since a trip to the hospital at Thanksgiving. He was discharged at the end of January. He was out of rehab for 106 hours and promptly fell again and went back to the hospital for another week and back to rehab (he had time left because they discharged him earlier than we felt comfortable with, we didn't feel he was ready.) But a lot of it was because he was not really ready to come home when they discharged him the first time. And we were going to send him back to the same place - they wouldn't take him back (not couldn't, wouldn't - they said they couldn't get him any closer to his baseline). He has been in a different rehab now since the middle of February and he comes home this week. By all rights- he should be back at HIS baseline (which is the bare minimum to come home really)
He will be getting several weeks of PT and OT 2-3 times a week. And weekly nurse visits. Along with his regularly scheduled bath aide 3 times a week (via the VA) and the Social Worker at this rehab has suggested and started the process for palliative care to get him a more coordinated care plan.
Falls happen - there isn't too much outside of the obvious that you can do to prevent them. (removing obstacles, installing bars where necessary, ensuring floors are dry, making sure they are not wearing slippery socks, , etc) She will probably be scared to shower as well. But if she can stay a little longer it will probably be good for her. Even if she hates it - FIL certainly does. But we regret letting them discharge him when we did because we had to start all over again. Even though they didn't really give us much choice (BIL/SIL live with him and are his full time caregivers) They advised that they had to discharge so we took him home. If we had known what we do now I think we would have tried to push back some to test the waters.
Explain to her that this is all about her " safety" first..... Speak with her PCP also .....and the facility staff for input on present status and expected progress, recommendations etc.
Practice good self care....you need it and deserve it......
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