To walk or not to walk that is the question.

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My mom is 78 just discharged from Acute Rehab from my unit . I am a Rehab RN , so I know how to walk her . The problem is she walked 75 feet in rehab with bilateral DVT 's , min assist in shower , standby assistance to stand . Last night she came home via medical transport , I knew she would be to tired to get out of the car ,so I set up transport to pick her up . She gets home last night I got her changed cleaned up and said ok let's walk to bed ... She said no , I said what ?? I said mom there's no reason you can't stay home unless you walk . She said no ,needless to say I was mad ,, yet I tried to explain I just worked a 13 hour shift she knows because she was on my unit and I was in charge . I explained I'm tired and haven't eaten yet today . She has dementia and Alzehemiers but mild .. She said " that's your problem ,,, ugh ...she has very bad arthritis in her knees and the bilateral blood clots in her legs. So I understand she has pain , I gave her a pain pill and tried again , she said no push me in my wheelchair . I said mom I worked all day I have psoriatic arthritis and there is no reason for you to ride on the wheelchair get up and walk , I asked her why she wouldn't walk she say she was tired ,,,,, holy moly I was disgusted ...I said you will walk she then walked a few feet and sat down and said there .. Ugh by then I said forget it pushed her to bed and she climbed in. I made her walk this am and she did mid to mod assist sitting every 3 feet .. Oh Lord ,,, I was very patient and gave positive reinforcement .. But it was a struggle .... So my question is ,, she needs to walk , and I want to keep her mobile ... But if she refuses I get stuck pushing that wheelchair when I know she can walk... She is a retired RN of 50 years , my sister was my only helper as a caregiver and she died suddenly from a Pulmonary Embolus August 10 2013 ,,,age 49 we were RNs at the same hospital , I have a brother out of state who sends money when I ask . She has plenty of caregivers when I work ,,,,what do I do when she refuses to walk and makes me push that wheelchair ? She weighs 245lbs and is 5foot 4 . I have PT and OT coming to the house she usually refuses ... I love mom she's all I have I take excellent care of her and lacks for nothing . I'm just need to know how to handle her when she refuses to walk .. Thank you for listening to me vent

21 Comments

Seems like she's taking an arbitrary position and putting you in the situation of defending your requests of her, turning the tables on you. Now she's in control, telling you what she will and won't do.

This may be part of having been a nurse, in control of other's health, in charge, and benefiting from the helpful and caring role she played in her career, a role in which the situation has been reversed and she now is in the position of needing assistance. Perhaps she's angry at this turn in her life, but it's not your fault.

Unfortunately, you might just have to draw a line which you won't cross.

If she refuses to cooperate with the therapists, I'm sure they'll note that and Medicare (if that's her primary insurance) will refuse to pay for any further therapy, thus unwittingly allowing your mother to once again control the situation.

I'd like to think I'm wrong in this assessment, but if I'm not, this is going to be a mental tug-of-war between the two of you. You may have to stop asking her to cooperate, stop defending yourself, and establish care and walking parameters.. I don't say this lightly because it's really hard to do - you'll feel guilty and she'll exploit that. You can count on that. (Been there, done that.)

Another way to address the situation is to begin making alternate plans, such as considering an out of home placement, on the assumption that she won't be able to walk on her own, and that you can't continue to jeopardize your health by pushing her in the wheelchair. Given your concern, this would likely make you feel cruel, and I think that's a normal reaction.

Unfortunately these mental tugs of war aren't easy to deal with or resolve. But if you don't begin to stop pleading with her (I don't say this facetiously), she'll continue to establish her dominance in this relationship and it will be harder and harder to get her to cooperate.

I wish I had some good suggestions, but you're in a tough situation.

Do you think one of her doctors could talk to her and perhaps "shake her up" a little bit by advising what will happen to her if she doesn't practice walking?
Don't give in. Be nurse Ratched. It's not about ability, it's about control. She wants to control you and not let you be in control. For the sake of your own mental health, consider other placement for her. Obviously she knows who she can manipulate and who she cannot. Surely as an RN you have seen patients who seem to be improving and pull a reversal when family shows up. Don't let her play you like a fiddle.
I made it clear to my dad (before he passed away) and now my mom that when they can't get up from the toilet, it's time for them to go to a greater level of care. I'd say the same thing to your mom. If she can't get to the bathroom on her own and get up and down from the toilet seat (using a raised one), then she needs to have non-family professional care in a care setting.

Don't make yourself crazy. Set a firm but loving rule and stick to it for your own health and happiness. Then it's her choice whether to try to comply or not. If she doesn't, she moves to assisted living or a nursing home. You have just as much right to live in a happy home as your mom does to expect care.
I have a similar situation. Mom broke hip 11-2-14. Improved slowly but steadily until 4-15. Then started regressing until now almost a total lift. The manipulation theory is interesting. But I'm seeing an almost total lack of confidence. Don't discount the fear of falling again. Now just trying to build back mom's confidence after two unfortunate helper incidents where one dropped her and the other was not real good with transfers either.
Your mom has dementia. The role of Tough Love and the rules of power struggles and the hope of "training" someone with dementia get tossed on their ear. This is the new normal. It ain't pretty. But you can work with it.

You have been in the medical field a long time and I'm sure your are more than competent. But as I saw up close and personal with my husband's care, not everyone in the medical profession is trained about dementia. If you are, great. If not, do what the rest of us do -- a little self-education. Join a support group. Read appropriate articles (and you will be well qualified to judge their quality) on the Web. Especially look up Teepa Snow videos. And read a few books, if reading is your preferred method of learning.

You really can't treat mom as you could have even a few years ago, before the dementia started.

First I'd say don't make it about you. Don't tell her to walk because you are tired, you have problems, you need to eat, etc. A few years ago that would have tugged at her heartstrings and been very effective. But dementia makes people appear very self-centered. The reason she needs to walk is to maintain her ability to do it and therefore more independence. She needs to maintain the strength to get out of bed and to get to out of a chair and transfer to her wheelchair. And to do that she needs to walk when she can. In other words emphasize the benefits to HER. That is foremost in her mind right now.

Next, reevaluate your standards. She can walk. She should walk. But does she need to do it ALL the time? Perhaps her first night home when she was looking forward to relaxing and getting into her own familiar room and bed was not the time to make an issue of it. She just got through a rigorous program of rehab. Can't she have one night off? Try to see it from her point of view.

I understand those who say draw a line in the sand and stick to it. Establish boundaries. Don't give in. Good advice EXCEPT that your mother has dementia. Sometimes she is able to be a bit logical. Take advantage of those times! Sometimes she is tired, out-of-sorts, depressed, and secretly very confused and scared. Don't expect her to be able to abide by the same "rules" that she can handle on her better days. It is more important to be flexible with someone who has dementia than to be consistent in your expectations. Yes, they do well with a consistent environment -- lunch at the same time, same morning routines, etc. But the consistent thing about your behavior toward Mom should be love and what seems best in the circumstances at the moment.

So how much walking does she need to do, in order to maintain strength to be able to transfer smoothly and with minimal help? You probably know that better than most of us would. That should be your goal.

How much pushing the wheelchair can you do when you've had a hard day's work? That is a legitimate factor, too. But it is a problem that might be solved in another way, such as an additional helper after you are home and until Mom goes to bed. Or an electric wheelchair. I'm not saying ignore your own needs -- just don't count on Mom to be able to cooperate with getting them met.

Her position may seem arbitrary. She may seem to be manipulative. But you really, seriously have to keep in mind that SHE HAS DEMENTIA! There are plaques or tangles or protein deposits and/or atrophy or some other physical problem that would show up in her brain if she died today and had an autopsy. She really and truly is not fully in control of her behavior.

Perhaps your mom needs a greater level of care than you can provide, or perhaps she will later. But you are wonderful to try to make sharing your home work for her and I wish you every success for as long as it can last.
Oooooh what a horrible situation! She is totally taking advantage of you--don't let her. Are you her DPOA? MPOA? she is beyond living at home. Check her into a nursing home, and get on with your own life. You have already done everything you can do, and more than most would do AND you have your own serious health issues. Please, respect yourself and your own life and let mom go TO NH.
I am sitting here literally with tears in my eyes. My dear sweet mother has dementia. My wonderful husband died after a 10-year journey with dementia. It makes me very, very sad to hear people with dementia described as "taking advantage," "arbitrary," "manipulative," and "it's her choice to comply." My god, these people DO NOT choose to have dementia.

Maybe people who give advice about caring for someone with dementia should first state how many years they've lived with someone with the condition.

It may be perfectly true that, in love and with her best interests in mind, you will decide she needs to be in care center of some kind. If that becomes the case, move forward without guilt. But for heavens sake, do not blame her for what she cannot help.
ohmeowzer, my mother will let me do everything for her if I would. However, I know it would be bad for her. When I know she can do something, I won't do it for her. I tell her I'm not being mean, but that I want her to be able to get up and do things as long as she can. I've told her on several occasions that I would stay to help her as long as I can, but if she gets to the point where she can't walk to use the bathroom and other things, then it would be more than I could personally handle. So me having her do things for herself is to help her remain in her home longer. (I'm a firm believer in the Use it or Lose it principal.)

It is tougher when there is dementia. My mother has moderate dementia, so will often get quite angry with me. Still she ultimately does things for herself most of the time.

The greatest difference I can see between your mother and mine is their weight. I know the extra burden makes it harder on your mother. Do you think there is a way to shed some pounds without making her feel deprived? That would help a lot, I'm sure. It's probably not easy hoisting 245 lbs onto infirm legs. I am thinking that even 200 lbs would make a world of difference.
Jeanne, I am 63, my sister is 60 and never progressed beyond the mental capacity of a five year old. She developed seizures at the onset of puberty. All my adult life I have interacted with people of various and limited physical and mental capacities. All of them were capable of manipulating caregivers. It's something they do as a survival technique. It's not about blaming them, it's about recognizing the situation and modifying behaviours.
Pam, I do know that you speak from experience. I always respect your posts, even when I occasionally don't agree with them.

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