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

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@ vikki - that is exactly my concern though I am not qualified to say it. Couple that with the latest figure of 40% of caregivers dying before their care receivers and this is a very risky situation.

thx Jessie. Yes, it applies widely. There has to be a balance between the needs of the care receiver and the needs of the care giver. Given that age and illness cause ongoing decline, which may be the case for both, the situation needs to be re-evaluated regularly, and appropriate changes put in place. It is no one's fault - just reality.
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emjo, so well said. What you wrote is true when it comes to caregiving. We can only do so much. No matter the reason, when the task becomes more than we can handle, then it is time to consider alternatives. Who is to blame is not really important.
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Family history plus inflammatory disease = very high risk of blot clots for you! Is your doctor keeping this in mind and recommending preventive measures?
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This is not a black and white situation - few are. Just because someone has been diagnosed with dementia does not mean they cannot be manipulative. I suspect as the disease progresses, the ability to be intentionally manipulative decreases. However if, for example someone has been manipulative all their life, dementia is not going to change that behaviour for some time. People can become manipulative as they age.

In some ways I think it is irrelevant. other than that knowledge can be power, so to speak.

As always, the caregiver should put on the oxygen mask first. You, the OP, are working at a full time very demanding job, and have a difficult patient at home to care for. She is your mother so there are parent-child dynamics, she has dementia, she is obese and she is refusing to walk - or did recently, has double DVTs and bad arthritis.

Also your sister died from a blood clot at the age of 49.

That makes me very concerned for you and the load you are carrying. Sis died from a blood clot, mother has blood clots... You are overworked and stressed and have psoriatic arthritis What are your chances of developing further heath issues if you continue on this road?

I think you have to be very practical here. You come home from work tired. It sounds like pushing her in a wheel chair much of the time is too tiring for you. Look at the options - as suggested an electric wheel chair, additional aid on your days off, letting her know clearly but without blame that your abilities to care for her are more limited if she cannot/will not walk and so on.

I do not think this is all about her. It is also very much about you and what you can manage.

Look at it very objectively. If your mother cannot or will not walk - whether out of manipulation or for any other reason - how does that affect you as her caregiver? Can you continue to do it or will she need to be in a facility? I doubt explaining it to her will do much good. If she is manipulating it just adds fuel to her fire. If it is dementia she will not be able to process and retain info well. It may be a combination of both. Just carefully think through what you can and cannot do and present her kindly and clearly with the alternatives.

Blessings
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My stumbling block there was always that I was much more anxious to get to bed than she was. Never could win a war of attrition.
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The game here is to get you to jump up and wait on her. Don't do it.
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The OP just says "No, I am not going to push you, so I guess you will have to stay there until you can move it yourself" and drop the subject, do not nag. Show no emotion or expression. Go back to reading your paper or crank back the barcalounger and shut your eyes. The game h
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Um. What would you do if she were a patient, rather than your mother? Can you put on your RN hat and get brisk with her? I'm thinking metaphorically but maybe literally would be a strong signal to your mother too. This must be so frustrating for you.

Jeanne and Pam, as so often I find myself agreeing with both of you - only this time it's making my head spin. On the other hand, most aspects of my darling late mother's personality did that…

My mother was highly manipulative, if you tell it like my SIL; or excessively timid, if you tell it like my exSO. What it boiled down to was - yes indeed, Pam, survival technique - her way of sidling up to what she wanted instead of saving us all time and migraines by saying what she was feeling and what she wanted. It drove me nuts. It also made my heart break for what made her so afraid that her expressing a view was somehow reprehensible - simultaneously with driving me nuts. So yes, Jeanne, not some conscious Macchiavellian ploy with the person going "tee hee hee gotcha" internally, and certainly not blameworthy; but all the same not something anyone should feel guilted into complying with.

So: if we translate the OP's mother's thinking into speech: "I could walk that far and I know it would be good for me, and when other people who love me less demand it I will do it. But it hurts, and I'm tired, and I can't be arsed, and more to the point I know that because you love me - and because you've had a hard day at work and you haven't the energy to win - I can get away with it. You can't make me."

Now then. So what is the right bluff for the OP to call?
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Actually I see what everyone is writing here as correct. I think the problem comes because people with dementia are very different. When we know the person, we know what they can and can't do. We also know their personalities. I believe our main goal should be to do what we know is best for them, knowing them like we do.

I think what Jeanne said about not blaming is important, because when we blame, we start to resent. This doesn't mean not to encourage and work with a person to do the things they can do. Not doing just hastens loss of abilities. In my mother's case, my main goal is to keep her mobile so she can stay home long as possible. So when she asks me to get her water and I tell her that she can get it, I am not being mean. It is just I know how these things go. My father sat in his chair until his circulation wasn't working anymore. The end result was painful for him and us. It made me wonder if he might have done better if he had kept moving some.
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I see the words like "taking advantage," "arbitrary," "manipulative," and "it's her choice to comply" as being blaming words. They are not helpful because they perpetuate the notions that if only the person with dementia would behave differently ... when, in fact, they usually can't.

You are right. We don't understand each other. And, yes it really does matter if someone has been primary caregiver for someone with dementia, or has lived with someone with dementia, or has had some responsibility for someone with dementia. Having dementia is NOT "normal human behavior."

My sadness and tears were/are not about whether OP should stick it out with her Mom or find other solutions. That is a profound question with lots of viable viewpoints. It is the "blaming" attitude that I see so often on this forum and sometimes in professional care settings that really upsets me. In the 10,000 answers and comments I've made here over the years, I have never advised someone to suck it up and make sacrifices and ruin their own lives. No. Caregivers have as much right to a meaningful and happy life as the people they care for. Sometimes putting someone in a care center is absolutely the right thing to do. But not because the person with dementia stubbornly won't comply with the rules or is arbitrary or taking advantage. Because under the unfortunate circumstances (which they did not create and cannot help) that the person they care for cannot cooperate with their own care it is the loving and best thing to be done for them, consistent with the caregivers needs and rights as a worthwhile person.

The Tough Love approach can work in many situations. It is simply not applicable to people who have lost touch with behaviors and consequences and who, even if they understand it, won't remember what they've "learned" the next time around.

Do what you have to do. Just don't blame the victim.
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