Mom's arthritis pain and noncompliance - any suggestions?

[MBAustin]

(Warning, this is long one.)

My 82 year old mother has had severe arthritis for many years. She is overweight but other than that and the arthritis, generally healthy. She had one knee replaced about 15 years ago but didn't feel that it made things much better so refused to have the 2nd one done. She started water exercise after the knee surgery and it did wonders. Unfortunately, my father died after a short illness about 6 years ago, and she moved to an independent living complex near my sister in a small town with no water exercise facilities at all. So she hasn't had any good exercise in that period (she tried a seated exercise program but about 3 years ago she said it hurt too much to continue). Things really started downhill when she fell in her bathroom last summer and injured her shoulder (nothing broken, just lots more pain). She decided she no longer felt comfortable walking around her apartment (she has a scooter but until then used it only when she left the apartment). So now she basically goes from her bed to her lift chair to her scooter and back again with essentially no walking. As a result, she has dramatically lost physical condition and especially balance. Her GP prescribed therapy twice in the past 6 months and she refuses to cooperate saying it hurts too much.

In December, she fell again and thought she was knocked unconscious so my sister took her to the ER. Found out that her head was fine but she had an undiagnosed urinary tract infection and deteriorating skin caused by poor hygiene. So now she has a home health aide come in twice a week to help her bathe. Here is where the problem gets worse - she refuses to allow the aide to bathe her about half the time, saying her shoulder hurts too much to get up and into / out of the shower chair.

She doesn't drive so anytime she needs to go somewhere, my sister has to take off work (I live 1500 miles away). She refuses to use a hired car service. She used to walk from the front lobby of her complex out to the car with her cane and someone assisting, but now she refuses to do that also and either goes out in her scooter or a wheelchair. Anytime she gets out of the car, it's directly into the wheelchair.

I visit every couple of months to take a few appointments off my sister's load, run errands, and take care of things around the apartment. (Note: I offered to move her closer to me several times but she is settled and doesn't want to move.) I was there about 3 weeks ago and I talked with her about how important it is for her to cooperate.

Today she was very uncooperative to the point where the health aide called my sister at work to try to figure out what to do and they spent 30 minutes arguing with Mom ("my daughters can't force me to take a shower").

I called her this afternoon and she just feels the constant pain is too much to handle. She's been on Celebrex for years, takes Aleve occasionally, and her GP recently prescribed Tramadol (which seemed to help a bit but obviously not enough). My sister is at the point of wanting to move her into assisted living (another building in the same complex) so she has more attention and supervision, although I don't think it will help with the compliance.

She goes down to the cafe every morning to pick up her breakfast and newspaper and usually has lunch with a group of ladies. She does a few of the activities (she is scared to go upstairs in the elevator so only participates in the ones on her floor) but otherwise spends her days watching TV and playing electronic solitaire. Other than being forgetful, she seems OK mentally.

This is very difficult for both my sister and me - it is really wearing on my sister. From those of you who have been there with a parent - any suggestions or thoughts?

Thanks in advance

[Meadbh]

There is only so much you can do. Your mother is an adult and can make her own decisions. I am assuming that she has been screened for depression. I think that you and your sister should do your best to avoid feeling guilty and should just provide whatever support your mother will accept.

[Sarah in SC]

My DH gets frequent calls from the nursing home that his dad refuses bathing. He just tells them thanks for trying and to try again another day. There isn't much you can do, I guess.

[ronin]

My sympathies are with you. I am in very much the same situation with my mother. We may be a little farther along as she has been in assisted living for a few years. That was really the next step and has been very helpful. Being very stubborn and generally non-compliant with any advice she doesn't want, it seems that only when things get bad enough will she grudgingly go along with the program, for a while least. We leave her to it since she just gets riled up if we get too outspoken. I don't take it personally, but it has taken a big toll on my sister.

[MichaelB]

Not much can be done by the siblings, but a move sounds like it could be helpful for your Mom. Assisted living can't do much for compliance but it can provide therapy, oversee medicine and diet, and make sure medical care is available. Aides and staff can also deal more effectively with the attitudes.

[Happyrick]

Please don't take this as anything other than a well meant suggestion, but having been there done that, I would ask her GP or another healthcare provider to conduct a mental assessment. I believe it is a simple exercise to determine if there is cause for concern on that score. As a son I was the last to think or know that my Mother had serious issues, most of which started with similar behavior.

[Sue J]

When I visited assisted living places for my Dad, they told me that many of the elderly take a bath or shower only once a week. It didn't seem to be an issue.

When my Dad broke his hip and was recovering, he was resistant to a lot of things. Instead of telling Dad it's time to do whatever it was, they told him to decide. "What day would you like a shower?" sounds better than, "Stop what you are doing, it's time for a shower." He needed to feel like he was still making the decisions rather than being treated like just another task on someone's list.

The best time this worked is when they told him it was time to stop using the wheelchair and only use the walker. He said he wasn't ready. So they asked him what day he would be ready, he said, "Wednesday". The therapist agreed and on Wednesday he was only using the walker.

Good luck to you. Seeing such drastic change is so hard. Within 2 weeks my Dad went from being a completely independent man caring for his wife to being a widowed, nursing home rehab patient.

He's recovered somewhat but much too quickly he became elderly.

[Moemg]

Your Mom should probably see an Orthopedic surgeon to see if she can have cortisone shots to ease the pain. My Mom is 96 and the shots lessened the pain for years .When her hips deteriorated she had unmanageable pain until she had hip replacements in her eighties .I know your Mom does not want surgery but she should see what options are available . No one should have to endure that much pain. My Mom also has gotten cantankerous as she has aged. She only wants her daughters or her sister to care for her not these strangers that the agency sends . She would also probably do the wheelchair thing but we try to keep her moving.

[obgyn65]

As usual, I agree with Meadbh.

Quote:

Originally Posted by Meadbh There is only so much you can do. Your mother is an adult and can make her own decisions. I am assuming that she has been screened for depression. I think that you and your sister should do your best to avoid feeling guilty and should just provide whatever support your mother will accept.

[MBAustin]

Thanks to everyone for the support and suggestions. An assessment for depression or other mental issues is a good idea. Working things out so that she has choices to make on her own also makes sense. I think we'll also meet with the staff at her apartment complex who interact with her every day for their impressions and suggestions.

[braumeister]

Quote:

Originally Posted by Sue J When my Dad broke his hip and was recovering, he was resistant to a lot of things. Instead of telling Dad it's time to do whatever it was, they told him to decide. "What day would you like a shower?" sounds better than, "Stop what you are doing, it's time for a shower." He needed to feel like he was still making the decisions rather than being treated like just another task on someone's list. The best time this worked is when they told him it was time to stop using the wheelchair and only use the walker. He said he wasn't ready. So they asked him what day he would be ready, he said, "Wednesday". The therapist agreed and on Wednesday he was only using the walker.

Based on experience with my own mother, this is good advice.

Also, when she was in the retirement community, the only physical exercise she ever got was using her walker to the dining room 3X a day. She wanted a scooter like many of her friends used, but we were able to avoid that because her eyesight wasn't good enough for her to navigate the hallway safely (without running someone over). The staff was very supportive, saying that at least 90% of the residents got no exercise except for going to meals.

[Stanley]

I don't mean to sound critical, but.... Is this about your mother? Or is it about you?

I've been where you are. It's frustrating and eats at you. You have my understanding. Give her choices and the time to make them. But, it is her life, and we can't control other people. In other words, I was making it about me and my happiness. Once I let go of this, helping my aging parents was less stressful.

[MBAustin]

Quote:

Originally Posted by Stanley I don't mean to sound critical, but.... Is this about your mother? Or is it about you? I've been where you are. It's frustrating and eats at you. You have my understanding. Give her choices and the time to make them. But, it is her life, and we can't control other people. In other words, I was making it about me and my happiness. Once I let go of this, helping my aging parents was less stressful.

Stanley - you're correct, it's probably more about how my sister and I should handle this than about Mom herself (although some of the suggestions regarding her physical and mental state have been very helpful). My sister is extremely stressed about this, feeling it is her responsibility and that if anything happens to Mom that she should have been there to protect her (she's reluctant to go away for weekends or vacations for that reason). Unfortunately, when I try to talk with her about this (that she should lighten up a bit), she says basically "that's easy for you to say, you aren't here dealing with it every day". It doesn't help that her SO's sister had his parents living with her for the last 3-4 years of their lives, so my sister thinks doing any less is not being a good daughter. At least that's how I'm reading it.

Maybe I should try to find a book that explains some of this more objectively?

[Katsmeow]

I particularly thought that Moemg's comments were good. If your mom is refusing to try to walk almost at all, it just seems to me that she is in a lot of pain when she tries to walk. I don't think that most people will refuse to walk unless that is the least painful option (there could be exceptions, of course). So, it seems that perhaps she needs to see a physician (maybe even get a second opinion) to see if there is some way to help her so that walking won't be so painful.

[GolfingDuo]

Quote:

Originally Posted by Moemg Your Mom should probably see an Orthopedic surgeon to see if she can have cortisone shots to ease the pain. My Mom is 96 and the shots lessened the pain for years .When her hips deteriorated she had unmanageable pain until she had hip replacements in her eighties .I know your Mom does not want surgery but she should see what options are available . No one should have to endure that much pain. My Mom also has gotten cantankerous as she has aged. She only wants her daughters or her sister to care for her not these strangers that the agency sends . She would also probably do the wheelchair thing but we try to keep her moving.

I disagree about the cortizone. It doesnt work and is more painful than it is worth.

Quote:

Originally Posted by Katsmeow I particularly thought that Moemg's comments were good. If your mom is refusing to try to walk almost at all, it just seems to me that she is in a lot of pain when she tries to walk. I don't think that most people will refuse to walk unless that is the least painful option (there could be exceptions, of course). So, it seems that perhaps she needs to see a physician (maybe even get a second opinion) to see if there is some way to help her so that walking won't be so painful.

I agree she should be seen by a doctor. An MRI to see where the pain is.

[haha]

Quote:

Originally Posted by GolfingDuo I disagree about the cortizone. It doesnt work and is more painful than it is worth.

Perhaps it did not work in your experience, or for you or someone you know. But Moemg just said that it worked for many years for her mother.

Probably nothing works for everyone, even suicide has a less than 100% success rate.

But if it has worked for some people, and the risks are not outsized, why not give it a try?

Ha

[GolfingDuo]

Quote:

Originally Posted by haha Perhaps it did not work in your experience, or for you or someone you know. But Moemg just said that it worked for many years for her mother. Probably nothing works for everyone, even suicide has a less than 100% success rate. But if it has worked for some people, and the risks are not outsized, why not give it a try? Ha

Yes if the doctor prescribes it. It has been my experience it doesn't It worked for bone spurs on my heal but did not work on my shoulder or knee.