To walk or not to walk that is the question.
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
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.
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
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?
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.
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.
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.
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.
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.
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.
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?