My mother has always been a stubborn, I am always right, my way or no way, type of person. My father passed away in 2005. I am the only living relative she has other than my two daughters. My mother is a fall risk and falls 3 to 4 times a year. She always goes to the hospital and some bone has always broken in the fall as she has severe osteoporosis also.
She would come to my house to recuperate after each one of these falls after coming out of skilled nursing. She would stay with me anywhere from a day to a couple of weeks depending on how she was and then she would go back to her own home.
Three months ago was completely different. She never did recover and her dementia got even worse where I thought it was completely unsafe to have her alone at her own home.
Really didn't want her to live with me (I have always loved her, but her unwillingness to hear any other side of a discussion has made it impossible to enjoy her company). Now, with the CONSTANT questioning over and over and over again and her REFUSAL to use the walker inside the house has made me despise her. I know she can't help the dementia, but that doesn't mean it doesn't affect me at all. She asks the same things over and over again and gets pissed off if I tell her the truth. When I put the walker in front of her she pushes it away and tells me to stop treating her "like a child" when I beg/demand/bargain/plead/explain for her to use the walker so she doesn't fall. She tells me she doesn't need the walker and the doctors are wrong because they don't see her everyday, so how do they know?
She IS very appreciative of all the things I do for her, everything from getting her dressed and undressed and bathed and laundry and everything, everything, everything. Those who do it, know.
I feel that I have it twice as bad because it's not "just" the dementia (which is impossible to deal with), but it's also the fall issue. She doesn't remember ANY of the at least 8 times she has fallen. None of them. And STILL insists on not using the walker. I feel she is being very selfish (I know. I know. She can't help it because of the dementia) because it's me that has to suffer too when she falls as I have to go to the hospital and "donate" five hours of my time there waiting and waiting for something that could be avoided.
So, here's my questions:
1. Regarding using the walker, should I continue to insist (and then have subsequent and frequent arguments) that she use it, or should I just point it out to her that she should use it, and then take the very real risk that she could fall.
2. I have a deep, dark secret. Yeah, probably not so much anymore. I hate her. Okay, I hate the dementia. But really, the two are so tightly intermingled right now that they exist as one anyway. I wonder when she will pass away so that I don't have to go through the minute by minute torture of 24/7 care of someone who is physically disabled and mentally disabled. Clearly, I am a piece of trash daughter because I should be praying for her to stick around forever..and I'm not.
3. How do you fight the anger/resentment? It doesn't help that I am an only child and completely and utterly all alone with this. She expects me to do everything for her, and I do, but I feel very angry at her not helping herself (think: walker!) and very resentful that I have to do this alone
I promised her I would never put her in a home. It would break her heart if I did. I'm going to do this for as long as I physically and emotionally am able to. Just trying to see if anyone has any golden nuggets of advice.
Thanks!
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I never wanted to be a caregiver and never had children.
I suffer from an anxiety disorder and cope very badly with stress
And I basically really hate myself for being so angry at her!
This is really terrible, terrible, terrible to admit, but I am more patient, tolerant, caring, attentive, whatever!, in public or in front of my friends than I am in private. I can't tell anyone how I feel, I think they would be disgusted with me.
She was also diagnosed with stage 4 terminal lung cancer in February and given 6 months and has just had another scan and X-ray and they are delighted with her lack of deterioration, I'm not! God that is so bad and selfish. I just have this hate inside me but also I pity her terribly as she looks so lost.
Thanks for letting me admit this here, so hard and so sad.
I have gotten into countless battles about my grandma claiming she doesn't need help and can do things herself and I have found the battles, she never remembers the topic only that I got upset with her which is no good. Battling with someone with dementia doesn't work. The best way is to remind her and have it available. If you are with her provide it making her feel safer with it there. Show her how useful it is so that she tries to use it but don't force it on her. Keep in mind, she probably still sees you as a child not really her caregiver. My grandma is shocked all the time when she learns I'm her granddaughter not her daughter as she still thinks of herself as a young person. She is always surprised when she looks in the mirror each morning and sees herself commenting on how old and how gray she is getting, and when she looks at the wrinkles on her hands, she always comments on how wrinkled she is getting. They just don't see things for what they are and instead they live in another world we can't begin to understand. So try to repeat and remind yourself to be kinder and offer rather than force. Try not to be frustrated and see if that doesn't make her respond more affectionately. I have found with my grandma, tucking her into bed each night with a gentle kiss on the forehead and reminding her that she has a busy day tomorrow and that I hope she sleeps well. Then before closing the door reminding her to close her eyes works so much better than reminding her it's bed time and telling her to sleep as she gets worked up and stubborn and refuses. Sometimes being kind and gentle but authoritative can trigger something in their minds making you into the parent instead of the child they often see you as. They see you as a mommy not their child. See if that doesn't work.
It is full of examples and ideas. It helped me deal with frustrations.
I tell myself I'm just glad to have her here.
Deep breaths brown paper bags the biggest brown paper you can find and keep telling yourself the "h*ll" that is going to consume them when mum goes as they didnt listen or "spend more time with her crap" will haunt them forever and ill be happy and at peace!!
I have ok days and very bad days notice i didnt say good days? i do have to force myself to think of the outcome and read the posts here of parents that have passed on from this horrible disease i have prayed for money love etc.... but right now i pray for strenght to help me get through this.
I know now that the stress is too much and it will be time for a home soon and that
breaks my heart BUT enough is enough it maybe time to look at NHs.
Even thinking like this makes me cry but my mum is going to die here if she dosnt do what shes told and she refuses to do ANYTHING i ask her.
Im drained,angry,hateful,so tired that even a wks holiday will not cut it i want her to be safe and i want to be her daughter again.
Im seeing her shrink with her next week please god he will have some answers OR get through to her that shes killing herself.
I feel she wants to die OR is it the illness? You have to do whats best for both of you and if the next fall is fatal its never your fault we try and try but you cannot reason with madness as captain says you are infact letting her do this to you and so am i so i think as we just cant cope and noone else around to help a home is the only solution here.
Hugs sometimes we have think of our own mental state as one person pointed out here before they have had thier life and are going to die one day soon so why kill ourselves by trying to keep them safe we cant! Thats the whole part of this illness really us killing ourselves trying to keep them from dying? I hide away now and just make sure shes clean fed and safe as i cant even have a conversation with her and she refuses to wear a hearing aid?
Ive heard that this stubborn hateful situation may not last long that she will progress and become easier to control i long for this so like me ask yourself how much more can i really take as this will get worse until enough is enough!
Mom could not use a walker and fell onto one twice. The second time landed her in the hospital and 4 weeks in rehab! They can be very dangerous for dementia patients! The wheelchair is a lifesaver for me. The new one was very expensive and paid for by insurance. She cannot tip it over or get into trouble when strapped into it. It has a huge tray that fits onto the arms and keeps her from leaning forward or tipping sideways over the side of the chair when she is tired. She can still walk with help, but it gets more difficult as the day goes on.
I find her OCD is the most difficult to deal with. She is in constant motion! Her hands never stop and sometimes it feels like she has 8 of them. Mom was never mean or self centered and raised 7 children equally, but where are they all now? Five years ago I was asked to leave my job to care for her 24/7. The fact that my husband and I live in the apartment next to her in the family's 4 apartment home, was part of the reasoning. The other was my dad died young, at 54, 31 years ago and I have always been the one Mom turned to for everything. So here I am dealing with her over the top OCD behavior for the last 5 years, along with frequent UTI's and PD issues. My sibs rarely visit or call anymore. Even though she is at daycare 4 days from 9-3, and I have help on the weekends, I have all the same feelings you do! If a caregiver says they never do, then I think they are lying or delusional or not taking care of someone as off the wall as we are. It takes it's toll no matter what, and there is nothing wrong with feeling the way you do.
I knit and paint when ever I can, to get away from all the madness. It does help to have something to escape to, but the fact remains that we will still be caregiving until the end or we decide we can't do it anymore.
This site is a great place to make friends and find that you are not alone! Keep coming back, vent, and jump in when you find a subject that helps you.
Regarding taking to her in a sterner voice, oh boy. That does NOT work with my mother! I have to beg, plead, beg some more for anything to happen. If I give a two minute "pretty, pretty please" she MAY use it. If I were to say something more on the lines of you WILL use it, that will backfire. My mother will NOT be told what to do. Ever.
I guess I just need to figure out which is worse:
Me insisting every single time every single day that she use the walker and having her not falling (good) but us having a horrible argument with us both feeling angry at each other (not good) MULTIPLE times during the day or:
Asking her to please the walker each day. Then her not doing it and then her falling (not good) and me not having had any arguments with her about using the walker (good)
Before my mother had dementia, she would never listen to anyone else's advice. She would always do what she wanted to do regardless of the consequences. This has just been exacerbated with the dementia.
I just don't know what the lesser of the two evils is. Do you?
i have instituted "non negotiables" and talk like a matron when we get to these issues, like : "you may not have coffee until your bowels have worked, we will be sticking to warm prune juice" (having an issue at the moment with holding it in) or, "we cannot go outside for a walk until you have your gloves on, here they are, put them on now". ( we have had a really cold winter).
it is working, miraculously. i feel like the bossy haridan from hell, but it is working, where suggestions, and please, and perhaps you coulds don't work.
would your mom respond to the 'matron' voice of authority, like my FIL does? its interesting that he is the meanest, most manipulative (sob) around and ignored me flat/ lied about me, but the minute i became authorative and " gave orders" he does what i tell him.
my FIL would not use the bath mats, and of course the inevitable happened, he fell and hurt himself badly. now, my matron voice says, its bath time, you WILL use the non slip mats, lets wash the hair now, and it happens.
re the walker, i have found the rollator is easier and lighter, and perhaps that is an issue here?
re his constant put downs and mean comments, i have started to just ignore them. taken me forever, but ignoring them, unless they get too bad, and then i say (matron voice), "we are not going to do this unless you can behave yourself and be decent and respectful"
part of me thinks he is responding to the voice of authority, like the doctors and nurses use. part of me thinks we have crossed some threashhold in his mind where he is realising he has now got parameters and borders to operate in.
with our parents, we expect them to be able to observe their own borders of behaviours, but with dementia, we have to become the guardians even of this, and patrol their borders for them.
i don't know whether this would work for you, but it is giving me some respite from the constant refusals and stubborness. but at the very least, please don't think of yourself of trash .... if we were honest with ourselves, most people on this forum have prayed or cried out in despair at some point for it all to please just END.
much love to you, xx
Alz Poem...
Please don’t try and make me Remember…
Don’t try and make me Understand…
Just let me Rest and know you’re with Me…
Kiss my Cheek and Hold my Hand
I’m Confused beyond your concept…
I am Sad and Sick and Lost…
All I know is that I need You…
To be with me at all cost.
Don’t lose your patience with Me…
Please don’t Scold me, Curse, or Cry….
I can’t help the way I am Acting…
Although I will try.
Just Remember that I need You…
And the Best of me is Gone…
Please just stay beside me…
Until my Life is Done.
I found that it is easier to get my mother to use a rollator than a walker. Still, she will not use it in the house. I am glad that she will use it anytime she goes anywhere. We never leave home without it. She won't use a cane, but she will use a long walking stick -- the type used for hiking. I think it's easier on her back and feels more sporting.
Much of the problem in taking care of our parents comes from their feeling loss of control. Their feelings may mirror our own -- they might resent that need us in order to stay independent, while we resent them for the same reason. Ideally a pair should be able to work out a nice system of mutual need. Many or most times that doesn't happen, however, so one side feels put upon by the other.
When a person has dementia, it is important to give them a sense of control over their lives. I usually give two choices at a time -- do you want fish or chicken, do you want to go out this afternoon or tomorrow, etc. The good thing about having two choices is that has to be one of the other, with no room for an option that is not acceptable. Perhaps you could ask your mother if she prefers to use a walker or a rollator. If you think she will say neither, maybe it would be good to give a choice between a walker or a 4-prong cane. My mother is more apt to accept something if she feels she is part of the decision.
I could write a book, but I know other people will have some good ideas. Most people here know exactly how you feel. They call us the "sandwich generation." For some of us, it is more like the "vice grip generation." We are being squeezed.