My Mom lives with me & my very supportive partner. My mom was a really great mother, super sweet & caring until my dad passed. I have 1 sister, somehow I became the scapegoat. She is 94 & mostly mean now, she has a lot of memory problems. I get her meds, make her food, take her to all her docs & appts, keep her company & help her in every possible way. I am blamed for everything. She talks smack about me behind my back to my sister. I am by nature an optimist, but the mean talk & blame gets so bad that I am constantly upset. I get that sometimes when someone has dementia they can take it out on their caregiver, but it's out of control. I also resent my sister for not sticking up for me & for not being more involved with the care of my mom. She could easily share the responsibility, but won't.
I think it makes it worse, because I remember how sweet my mom used to be & I don't know this mean person who took over her body. If I stand up for myself & say something like “ you hurt my feelings when you talk about me like that” she will go into hysterics & say I am causing her to feel ill or will lock her door & then blame it all on me to my sister. I find myself dreading to be with her & then feel guilty. It's very sad & I'm unsure of how to handle it?
Many others on this site have either been through it or going through it.
We can’t control anyone else’s behavior. I’m sure that you know this already.
All we can do is change our reaction to it, at least at some point in time.
Of course, it’s normal to honor our feelings.
I would never expect someone not to feel their pain. That’s impossible!
All I am saying is that we can’t remain stuck and stagnate.
We are designed to grow and learn from our experiences in life, and many of our life situations are painful.
It’s easy to become frozen in our thoughts and it’s very difficult to push forward towards viable solutions and healing.
It’s a process that can take awhile to sort out.
Best wishes to you and your family.
It’s difficult to remember that dementia changes who the LO is and it’s dementia that is causing her to make false accusations or be mean to you. If your sister doesn’t understand this, I would consider getting her a book about dementia that explains how it manifests itself.
I hope you find some things that help,
Please look into getting paid help to come into your home, your sister to help out, or placement for mother. And stop feeling guilty! Who would welcome being treated badly, especially when they're devoting themselves to caregiving??? Being old and demented does not give your mother or mine a free pass to be mean and miserable all the time! Don't buy into that nonsense and figure out how to care for YOU and your partner before you find yourselves in despair while your mother goes about her merry way! It's vital to get a break and find time for yourselves away from the toxic waste! Give yourself permission to do that, Ok?
Good luck!
So...do you want to change? You know you don't have to be the fulltime caregiver for your mother. It seems to be affecting your health.
Have you considered a facility for your mother? If not, then why not?
after a bad marriage & an illness of mine, my mom let me live with her till I got on my feet ( & she cared for me when I was very ill & also my young child, while she was also taking care of her parent at home)
I guess I thought the least I could do is repay some of what she selflessly did,
i think getting someone to help inside the home ,is a good starting point ,
this experience has made me think about what will happen , if this would happen to me, my gosh it’s
not a good thought,
when I was a child, my grandparents
lived in the same house , I wonder if that also has something to do with
trying To keep my mom in the house, I ve seen my mom take care of her parents , we ( our family) all
helped out
It is admirable for you to try to follow family "traditions", such as caring for those who came before us. Sadly it isn't always the same. Most likely there aren't a lot of extended family living with you, to share the chores.
My grandmother did not have dementia, so it was easier for mom and her sisters to share her care. She also passed before she was 80, relieving them of this duty BEFORE their retirement years! If my mother had been more like that, without dementia, it's much more likely that one or more of us may have been able to care for her in our places OR she would have accepted help in her own place. I tried to keep her in her own place longer by starting aides, only 1 hr/day, to get her used to having them. She didn't need much help at the time, so it was more to get them in the door and provide a sanity check for me (I live 1.5 hrs from where she was, so daily checks were out of the question.) Sadly this didn't last 2 months. Dementia does lie to the person who has it. Their self-image is NOT consistent with current reality. She insisted that she was fine, independent and could cook. She wasn't and couldn't. After taking the car away, the inability to cook became apparent. Taking care of finances was the first thing to go, as I could see the mistakes she was making. Other than those issues, she should have been able to remain in her place longer with help. A timed/locked med dispenser was set up to ensure she didn't miss them or take too many. The aides could check and point out any missed (they aren't allowed to dispense.) She was over 90 at the time, so once dementia was at play and she refused the aides, we had to consider a facility. When bros found out the cost of MC, their eyes lit up and they both said for that kind of money, they'd take her in. Sure they would. Neither could handle it. It would have been a colossal failure, with mom paying the price! They couldn't have been much more absent, both in helping take care of things, including the condo, and visiting mom.
Having a much older parent who also has dementia which HAS impacted her personality really can't be compared to what you experienced in the past. It doesn't mean you should give up trying. Get some help in. Try to lose the anger and resentment. Try to laugh off the "antics." Ensure you get time out to do things YOU enjoy. Get away from the house when the aide is there. Build your own interests. Mom's care is important, but sometimes things can wait. Just because someone says jump, we don't have to ask how high. Meanwhile, it might be good to explore other options. She won't get any better, but rather worse, so there may come a time when it just isn't working at all. If it's too much for you and aides, consider a facility. You will have some time after hiring someone to explore places nearby. Visit often, vary times you visit, ask LOTS of questions. If/when it comes down to safety, for both you and/or mom, then it will be time to move her. My mother outweighed me, so I wouldn't be able to provide her care. Stairs here were also an issue, as are bathrooms that are much too small to handicap. It was better for me to find the best place for her, nearby, and visit, manage everything and provide supplies. She was well cared for, always clean and relatively happy there. Thankfully she never took on a negative persona. I did ask staff who body-snatched her though, when they'd tell me how cute and funny she was, along with some of the stories about her antics.
Do come back after you've had assistance for a while and let us know how things are going. Have a chat with sister, to see if she can at least be emotionally supportive. Hang in there!
Sounds like it's time for her to move.
Your mother sounds very unhappy and possibly depressed and anxious. There are meds that can help with that.
My Mom no longer recognizes me as her daughter but as her caregiver. I no longer hurt by this reminding myself that my mom is NOT a well person. Separate the 2 moms, the real mom is gone, otherwise you will hurt yourself emotionally & she will drain the life force right out of you if you let her and she won’t think twice about it they’re that selfish & self centered!
What would hurt is if your sister believed the things your Mom tells her about you.
It is hard to separate the old mom from the now mom but try because believe you me it does get worse!
My Mom also lives with me in my home & has for 4 yrs now. I don’t have a partner that helps or is there for support. That’s a major plus!
YOU did everything you could so far, honorably, to fulfill what you felt were your loving obligations.
YOU will not get any help or agreement from your mother or your sister. It is what it is. Please enlist the help of your "very supportive partner" to find a facility where you can place your mom and GET HER OUT OF "YOUR" HOME.
Once your mom is placed, there will still be plenty for YOU to do, as her advocate and overseer, if SHE either "lets" you do it, or doesn't kick up a fuss. Memory Care places are usually quite astute about unjustified complaints by dementia patients however, once outside your home, if she goes off the deep end and continually complains bitterly, facilities are mandated reporters, and they may have to take action that could cause your mom to become a ward of the state.
So, after your mom is not in your home, if she doesn't settle in, and she still has enough of her brain wits about her, you can try to explain this to her in order to encourage her to stop, and "try" to explain the eventual consequences. It's usually a slippery downhill slope once they get into Memory Care, and you can only hope that she begins to forget her meanness and bitterness when she's not face-to-face with you and her living situation every day.
If you and your partner end up being the only supportive visitors she has, and without the daily grind of caretaker tension, she could even come around to looking forward to seeing you.
So, dont let Don's words come true:
"Oh, and there we were
All in one place
A generation lost in space
With no time left to start again"
Instead, maybe your sister will hear you through this (MY other Don favorite):
Now, I understand,
What you tried to say to me
How you suffered for your sanity
How you tried to set them free
They would not listen,
They did not know how
Perhaps they'll listen now
Now, I think I know what you tried to say to me
How you suffered for your sanity
How you tried to set them free
They would not listen, they're not listening still
Perhaps they never will
(...smiles...)
Anything to get her care from others or in a place herself. She has medical issues and you are not capable of addressing her needs, do not feel guilt about that. I appreciate all you did and your heart to do it.
The advice I've read - go for a doctor's visit. No doubt there is some medication, with fewer side effects - that can help immensely. As our days continue, I trust that I will remember all this good advice so I'll be able to handle those difficult encounters.
Take care of yourself and get some help and spend time with your significant other. Letting this be all consuming - won't help. Sending you hugs and support.
Please, please, please start searching for a place for mom - get her moved out of your home or you from hers as soon as possible. It's not too late to save yourself...and certainly not too late for mom - her nastiness won't change one way or the other based on your decision. She will cope with it and so will your sister.
Reality. Your mom is having serious problems with dementia and anxiety. Please get her evaluated by her physician. Do not be surprised if the doctor makes referral to a neurologist (for dementia evaluation and treatment) and/or a geriatric psychiatrist (for anxiety evaluation and treatment). Expect that your mom will be placed on new medication. Expect anti-anxiety medication to make her a little sleepier.
Reality. Your tiredness is a sign of burn out. You need more people helping with caregiving. Ask family, friends, members of faith community, and paid help to pitch in so you get some time off - and away from mom. Use your time off to meet your own health care needs and your "soul" needs (doing things you enjoy with people you value).
Reality. If medication and more help do not change your situation, it may be time for mom to move into a facility for professional care. Coming to this place of understanding is not an admission of weakness on your part. It is understanding that she needs round the clock care (something 1 person can not possible do). Eventually, most people with advancing dementia reach this stage.
When she is negative, maybe you can say things like, "Yes this is a bad day," or "You are angry that Dad isn't here to take care of you . . " whatever is relevant to her complaint.
I think you should respect what your mum would want.. not the person you are taking care of now, but your sweet loving mum. I am guessing she would tell you that she doesn't want this for you and to find her a good place to go. I have a sister like you and I have come to terms with the fact this will all be on me with our parents, it i just easier. But yes, you know what your mum would want for you.. Don't feel guilt, feel pride for being there for her when others wouldn't and save yourself.
Although it doesn't take any of it away, at the very least it is sometimes helpful to know you aren't alone.
* Many are either only children or have absent siblings.
* Often the absent siblings can make matters worse.
* Dementia does odd things to people, often changing their personality.
* Very often the dementia nasties are directed AT the caregiver.
None of these are rational, but dementia isn't known for being rational!
Feeling anger towards absent siblings is debilitating for YOU. It does nothing to change the situation or make them more responsive. You can't change your mother's behavior and you can't make your sibling help, but you can work towards more acceptance and try to lose the anger. It does help. I had to work my way through that, as I have 2 brothers who were mostly absent, but also unsupportive and sometimes downright nasty (physically and emotionally.) THEY were more of the problem than my mother was!
"I am blamed for everything."
Common. The best method is to laugh it off and agree. You know what you do for her and what dementia says/does is irrelevant.
"She talks smack about me behind my back to my sister."
Also very common. Again, you know the truth and that it's all made up. At the least, have you talked with your sister about it? Is she believing the crap she is told or does she just dismiss it? You likely won't be able to stop mom from saying these things, but if sister is at least supportive and not buying what she is told, then you try to let it all go. If your sister does believe it all and isn't supportive, keep contact with her to a bare minimum, but still know that what YOU are doing is good and right!
"I also resent my sister for not sticking up for me & for not being more involved with the care of my mom. She could easily share the responsibility, but won't."
Unfortunately, as noted above, the lack of support from siblings is common. It doesn't make it any better knowing that, but if you can realize 1) you can't change this and 2) your anger and resentment only hurts you, perhaps you can work on letting this go.
As for her "sticking up for" you, there really isn't a whole lot she can do. Dementia builds its own life and memories and can't be argued with, reasoned with or stopped. Sometimes it can be redirected, giving some temporary respite from the onslaught. Think of it as the Terminator. It has a one track mind and nothing will deter it. The difference is that weapons won't stop it, but her words are not going to physically destroy you, unless you let them.
"If I stand up for myself & say something like “ you hurt my feelings when you talk about me like that” she will go into hysterics & say I am causing her to feel ill or will lock her door & then blame it all on me to my sister."
This is proof of the statement I made about being unable to reason with or argue with dementia. It's all set in concrete, so trying to reason or argue is only going to backfire and potentially make you feel worse. We have to understand none of what is said is true and try to let it roll off, or laugh it off, agree with her and try to change the subject, redirect onto something more pleasant (not always possible.)
The rest of my response will be to your additional comment made Apr 21.
:)
i hope you’re ok!!
you wrote:
“You should very clearly say to your sister that it’s her turn to look after mum, and give yourself a complete break from your mum and sister. Do not go over to visit or call up to find out what’s happening...”
many of us are in situations, where if we would leave (and tell siblings to help), all that will happen is that the loved one will be totally abandoned.
many of us have siblings with zero morals. no scruples. they don’t care.
if they cared, they would have helped long ago.
if they cared, they would absolutely care about your life too, and the consequences on your life, since you’re the one helping with everything.
hugs!!!
i hope we all find good solutions.
dear byemsa,
hugs to you too!!
i’ve heard many stories like this: sweet parent becomes mean after dementia and treats terribly the adult child (often daughter), helping with everything.
be careful.
being treated badly has consequences on us, no matter how tough we are.
for example, it steals our time.
we all have limited time.
hug!!!!
i wish us all well!!!!
:)
But the problem lies with we neglect ourselves. Find someone you trust to take care of her for an afternoon or evening. Do something YOU want to do (alone or with your partner/friends). Read a good book. Workout. Go outside and breathe the fresh air. Have a spa date(get a couple’s package. Hint hint hint :) ). But whatever you do do it for YOU. Because as we all know (and don’t like to admit) is if we can’t take care of ourselves and meet our needs than how can we care for others?
Bottom line? Nurture your mind and body but also FILL YOUR SOUL WITH LOVE!!!!. And don’t forget you are worth it.
Best of Luck! :)
~ Mares
I read them everyday...you guys are what makes me not jump off a bridge...wow, other people feeling and fighting the same thing, what is better than that? A support group.
how many times I want to bang my head or his ...how many times I cry in a towel or whatever is near. How many times I wish I could change his life.
threw away my life in Connecticut to come to Midwest to help brother with Parkinson’s. That was 17 years ago... thought I’d be long gone by now, but still here, with him living with me and is 24/7 care.
He’s not grateful for anything, which is my biggest thing...find something every time you wake up to be thankful for. He resents, regrets, blames, and is a narcissist, and a typical Polish male from the 50’s.
he never stops to think that I changed my life to help him, can’t contribute as much anymore to SS, can’t even get any any kind of job because he is my focus. I owned my own biz, and before that worked for a huge department store like Macy’s.
He always likes to remind me that ‘it is my job’, that’s what women do.
ok, enough, just want to thank
it’s not the work that it takes every day, it’s the attitude towards life that drains me. Let’s not even get to the sibling who does nothing gives nothing.
so thank you ‘disgusted too’ for your posting, right on target
love to you all
this ain’t no disco....
christine