My 99 year old mother fell about a month ago and fractured her hip. She was living in Assisted Living. She has had multiple falls and injuries in the past. She had always participated willingly and fully in physical therapy she even seemed to enjoy the attention at times. With this new injury everthing has changed. She does not want to do the therapy, she does not want to get out of bed. She seems to have given up and feels there is no reason to make any effort. The therapists force her to try and stand, the goal is to allow her to at least stand and transfer so the hoyer lift (which frightens her) will no longer be necessary.
The last month since the fall has been one of non-stop physical, mental and emotional torture. All for her own good.
Her Dr. put her on anti depressants but so far they have made no difference.
So my question, is there a time we respect the wishes of the person, even if dementia and depression affect her thinking? Should we continue forcing her to do therapy in the hope that she will be more mobile eventually? There has been some improvement as she can now stand for a minute or so with support from the therapist.
Such a hard decision. I really don't think a 99 yr old should be forced to do anything and especially if she is anxious and scared. She will just be in a wheelchair for the rest of her life which with numerous falls, she should have been in anyway. Why a hoyer? Is Mom a big lady?
You realize, at this point, she will not be able to go back to an AL. Her care will be too much.
Is there anything she WILL leave her room for?
Are there any aspects of her therapy that she’ll express interest in?
Has she had any past friendships in her residence that she still maintain?
Does her therapist encourage you to think that she can improve enough to reach any reasonable goal?
Does her MD attempt to find some medication that may elevate her spirits?
A very tough call. In a somewhat similar situation with my mother, she usually participated reasonably in physical therapy until she was required to try a full flight of stairs. She started to cry and shut down. The therapist agreed that the demands of her therapy schedule were in excess of potential gain.
She was 90 at the time, and shortly after began using a wheelchair full time.
Is your mother staying in bed to avoid attempts to engage her in therapy?
Positive reactions, not really.
The staff, (she is at a nursing home, re-hab facility) gets her up, she has breakfast, goes to re-hab, has lunch and goes back to bed. She is not positive about any of it. They have to use a lift to get her out of bed which frightens her.
She is in a different facility from her previous AL. But she had no friendships there. Some relatives, friends from her hometown keep in touch or visit.
The therapists say she has improved and they are right. She can stand for a minute or so but she protests the entire time and asks to sit back down. She says it hurts her to stand and I don't doubt that it does. How much should she be expected to tolerate or understand? How much is pain and how much is fear and trauma I do not know. No one can say at this time how much she is capable of improving. Will she be able to use a walker again? Just stand and transfer to a chair? Unknown.
There is no way to do less therapy. This is the first step, stretching, strengthening, getting her to stand. It is do this or she is bedridden or into a chair using that dreaded lift.
She wants to go back to bed because she says she is tired and in pain. She has therapy in the morning soon after getting up.
The Dr. put her on an anti-depressant to try and help her mood and outlook. It's been about two weeks and I don't see much change except she is less sleepy and groggy. I don't know if that's from the meds or she has just gotten stronger and she is in less pain.
WHY do we work so hard to prolong the 'life' of someone who has already lived so very long? Why the antidepressants? Why the therapy? Why not just palliative care and letting mom do whatever the heck she wants?
Just love her and let her have the last few months/weeks/ days of her life without expecting ANYTHING from her.
When you say "force"... There is a very fine line to be drawn, here, and it can be difficult to keep to the right side of it. Encourage, support, assist, cheerlead, bribe if necessary - these are all fine. Force, actually force her, under protest? No. Not for any amount of her own good.
You're the best judge, you know her, and it sounds as though you try to be present during these therapy sessions? But, I don't know if this makes any difference - what would you think if you read about a 99 year old lady being "forced" to undergo strenuous PT and being given happy pills to make her want to get better? If you think your mother will get through this and regain some quality of life, you know best. If you don't - be your mother's advocate, and prioritise what makes her happiest.
Every situation is different but it is important to remember that "getting better" takes a great deal longer the older one gets.
Maintaining as much movement/ independence as possible is of primary importance but making the choice not to co operate with the therapists is also totally Mom's choice dementia or not.
By all means get Mom out of bed but make sure the chair she has to sit in is comfortable. Let her go back to bed for a couple of naps.
Any change of position is good because it helps prevent bedsores. but forcing anything else is a bad idea. It is very tiring being elderly and sick
Before the last fall all Drs., therapists, aides involved in her care recommended she remain as capable of walking and as strong as possible. Dr. encouraged her to get up and walk several times a day. Being confined to a chair would have brought with it a host of new problems.
Although my mother is 99 she is in remarkably good health. She has a pacemaker but no other major illnesses. Not diabetic, no pneumonia, kidney problems, UTI's since the fall. There is no indication whatsoever that she will pass away withing a few days, or months. So palliative care for the time she has left could be for years.
JoAnne asked "Why the hoyer?" Because Mom cannot get out of bed safely and transfer to a chair with only support from the aides. The goal of the PT at this time is to get her strong enough to stand and pivot so she can use a chair. Without that she is bedridden 24/7. And although she may think this is fine, of course she will be uncomfortable very quickly from lying in one position. Along with bed sores, increased chance of pneumonia, aspiration and on and on.
When she is in bed she says she is bored and just "lies here" but when up she wants to go back to bed. As for the therapy, yes, she is forced. She asks the therapists to please not make her stand, but they pull her up anyway. This has been going on since the fall. Of course she was in great pain in the hospital but it was necessary to roll her and move her for bed changes, wound care and position changes. She would cry and beg them to lie her back down flat but these movements were needed. I would have happily withdrawn care and allowed her to pass but there was no care that was sustaining her life. She is not terminal in any way.
So the choices are, allow her to lie in bed with all it's attendant complications and side affects or continue the forced rehab in hopes she will at least be able to stand and transfer. That would allow her to avoid the Hoyer and give more options for when/where she spends her day. But at the cost of further mental and emotional stress.
"She asks the therapists to please not make her stand, but they pull her up anyway."
- if it happens exactly as you describe, is not acceptable.
What do you think caused your mother's most recent fall?
What change do you think has made the difference between her being cheerfully ambulatory before, and her not wanting to get up and participate now?
There are other ways to do PT than to drag an unwilling patient from her bed. They also must spend more time and thought on discovering what, exactly, she is objecting to.
If the Hoyer is hurting her and the exercises continue to hurt her, I hope somebody has examined that healed hip REALLY carefully.
What was the pacemaker implanted for?
Why is she unwilling? I think the entire episode was so terrifying, painful and overwhelming she cannot cope with it. I think she is mentally and physically traumatized. She objects because she is afraid of falling, she says it's painful and she resents the complete loss of control in her life. That's my best guess from what she has said. PT is painful to anyone undergoing it, but most people understand the no pain no gain angle. She seems to understand but is depressed and angry and just plain fed up with the situation.
And yes the therapy happens as described.
I do not know what other methods of PT could be used to get her able to stand and transfer without actually doing that. The PT/OT's do stretching and massage to try and get or keep joints and muscles loose.
The hip is not healed but that does not appear to be the source of pain. She says her ankle hurts and her knees hurt. She has arthritis in her knees and I am certain they have not been helped by several weeks of inactivity. She is very afraid of falling. She seems hyper reactive to any physical sensation, the arm rest of the non-mechanical lift was resting on top of her arm and she said it was hurting her. Her toes were against the front rim of the non-mechanical lift platform, padded with a towel, but she complained they were being crushed when she stood. The Hoyer does not hurt her but she is frightened by it. She does not like the sensation of being picked up and moving through the air. Perhaps related to her fear of falling.
The pacemaker was implanted because she had a slow, irregular heart beat.
When my mom, post stroke, was in AL, (and had aphasia, so couldn't really talk) she was resistant to PT. We thought she was "just" being stubborn.
The PT noticed that she wasn't bearing weight on one side. He ordered a mobile Xray.
Her hip was broken.
Please advocate for your mom to have a VERY careful evaluation of her pain. Very careful and very thorough.
We had a nice young man on here a couple of years ago. He was told that his mother was stubborn and resistant to getting out of bed.
Her back was broken in several places. Didn't show up on the first xray.
PLEASE have her checked out. Don't let them dismiss her pain.
I'm sorry I don't have a better or clearer answer for you but I get the sense from your dialogue here that you love, care and know her enough to be on firm ground following your instinct here. Tough as it is I don't get the sense you will make selfish decisions I believe you will act in her best interest over yours if that's what's needed. My thoughts are with you.
I have also tried to explain her choices, remain in bed or submit to the lift/PT routine. She says she understands but 5 minutes later she has forgotten. Part of her dementia, she has little short term memory.
I learned on this site that fractures don’t always show up right after the injury.
The location of any fracture can help show where to place the ice, lidocaine patch etc to give her relief. If it’s not a fracture then you will know. After a fall sometimes there is a fear of falling again. So there’s that to consider but I think your mom is in pain.
I am a huge fan of therapy. I’ve seen my loved ones greatly benefit from therapy and have great quality of life for many years after having a need for therapy that brought them back to enjoy life. But it’s a fine line on forcing someone. Since you can see she has improved then you are encouraged. I would be too. But I would want to know that every effort would be taken to make sure she isn't in pain.
When my mom ( without dementia) was in bed she would say nothing hurt. But when she had to get up. Severe pain. My mom was tough. She forced herself.
She knew she had to move.
She was afraid to take pain pills but got great benefit from lidocaine patches and ice and heat packs. (She did take pain meds in the very beginning).
When my aunt (92 with dementia) fell and twisted her knee, she would say it didn’t hurt.
However when PT examined her they would find the pain. Even mild pain relief measures like ice packs and extra strength Tylenol helped my aunt to do her therapy. Ice doesn’t work on everyone. Some find more comfort in heat or alternating heat and ice.
There is a great deal to know about the human body and spirit. Each person is different.
I understand you are trying to return her to a better quality of life and to get there the PT must be endured. I get that. But please make sure she gets another looksee.
My mom had follow up X-rays lying in bed at her rehab. There are traveling X-ray services. My mom didn’t have to leave the rehab for the X-rays.
Hugs to you and your mom. I hope she’s better soon. Please come back and let us know how she’s doing.
Also - it’s going to sound so simplistic, but - water. I imagine they’re making sure she’s hydrated but it’s worth checking.
I recently heard a story that sounds identical to this — it turns out the hip replacement was installed incorrectly.
I know you wouldn’t want to put her through the pain of another surgery, recovery, etc. It may be worth investigating.
In the other situation, a second, corrective surgery fixed everything. The patient was fully cooperative with PT when the hip replacement was installed correctly.
Besides the pain, it would seem as though your mom has no incentive to do what is expected of her. If the therapists can’t think of any way to offer her a cause/result for her therapy, perhaps it would be worth a “break” to see if her demeanor improves and/or if her physical status declines.
If she is observably happier without therapy, I think she’s then earned the right to decline it.
My husband is in moderate cognitive decline, so I don’t yet know if this will keep workin long-term, but here’s something that has worked for me.
When he doesn’t want to comply with the recommendations of his medical team, I sit with him, make eye contact, and maybe hold hands. I say, “I know you don’t remember this because the part of your brain that would make that possible is broken. But when the doctor explained this to you, you agreed that you would give it a fair trial. Any time you decide you don’t want to do the therapy, you are the one who calls the shots.” Usually, he then does whatever I’ve been asked to facilitate for him with a sigh and “okay, if i said i would, i will.” A few times, we have even video’ed the doctor talking about it so we can take the expert home with us. Nothing works for all people or lasts for all time, but this has been more successful than forcing the issue.
My mom is 83 and a couple of weeks ago, caught herself when she was falling, resulting in costochondritis. Anyone who has had it knows it feels like a heart attack, very painful to move. She immediately wanted to take to her bed. She lives in memory care and they won't keep her if she can't get up to use the bathroom and walk to the dining room unassisted. We told her if she wanted to be moved to a nursing home with much less in the way of activities, it was okay not to get up but, if she wanted to stay in memory care, she had to keep moving even though it hurt. She made the decision to move just enough to stay at memory care. As was mentioned above, she IS nosy and couldn't go poking around the facility if she was in bed, so that was a motivator too. If your mom has nothing to motivate her, nothing she wants to be able to do, she will probably remain in bed.
99--my mind just freezes at the thought. I am 62, riddled with arthritis from the combo of 'bad genetics' and a life actively lived. I am currently rehabbing a broken foot that I broke 18 months ago!!!!!!!!!!!! Honestly, there are days when the thought of even standing on it for one minute makes me cry and I haven't even gotten out of bed. I WILL NOT live to 99 if it means pain, day after day. Life is to be LIVED not just to lay there and make Co2.
And it's just going to get worse.
My sweet kids would not let me suffer like this. And I do think your mom is suffering, and to what END? Another year, a few months with everyone in her life haranguing her to 'get up and get moving?"
Gosh, I hope at minimum you are allowing painmeds.
Not to be rude, but when my sweet border collie was dying of cancer, I let her lay wherever she was comfortable, gave her pain meds all day and let her pee on the floor (something she had NEVER done). I laid by her on the vet's floor and held her in my arms when I decided she'd just had enough.
Your mom's situation is breaking my heart.
Life will find ways to end...make it a meaningful one for them.
This fall etc may have brought to the fore front her eventual decline - it may have hastened it but it was coming - her spirit is tired & that is what has removed her desire to go forth - think about giving her love, support & comfort because this could take a long time to heal if it ever can
I hope this doesn't sound mean but maybe it is time for you to be realistic about how her spirit has started to withdraw into itself - she is basically saying 'I've had enough' & she doesn't want to be bugged by high energy physios etc that are so peppy that even their presence makes her tired .... just another view but one you should know might be true