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Merla

Dl

Anonymousjpl123

@Merla that is literally my life. I have found that therapy, being honest with the close people in my life, and occasionally standing up for myself (even though my mom doesn’t understand a lot of it) really helps. I would give myself a C- since I became a caregiver a year ago but it’s a work in progress.

As daughters, there is this whole mythology about how we are supposed to feel about caretaking and our moms. I don’t think it has ever been true, but it’s certainly convenient. My brothers have nothing to do with my mom and no one seems to have any of the same expectations.

i have recently been talking with friends about how my mom’s behavior now may be due to the dementia, but it’s only a worse version of who she has been my whole life.

for my part, I too have found myself cowtowing to abusive behavior just to keep the peace. I’m working on that.

To my mind, what I’m striving to as a daughter who is responsible for her now (with POA) is to make sure she is in a he best place I could find, she’s safe, well cared for, and getting the proper medical treatment. The fact that she constantly tells me how much she hates it, even though she is doing quite well there, and guilts me about something every time I visit is not something I should or need to take on.

I am not sure if you live with her (which I don’t have experience with) but it seems like it would be the same. You’re doing everything you can to take care of her. You don’t have to like her.

ALgal

I agree, I’ve always been closer to my father (87) - and now petty jealousies of unequal attention (based upon need) from mom (86) seem so childish.

Backstory, dad was diagnosed MCI in 2019, and just a few weeks ago - mom with Alzheimer’s.

When my eldest son extended an offer of help, we sold both homes and moved cross country to be just a few doors away.. This triggered mom’s suspected, but somewhat hidden, Alzheimer’s. Before the move, we had anticipated that she would play primary role in caregiving for him, but now find she is battling against accepting his new diminished abilities AND her diagnosis.

He is no longer reading/writing/able to tell time - yet she will sit him at a desk and give him a complicated reading task - appearing so happy with herself to prove he is capable of what he isn’t. When he can’t deliver, he is sad and frustrated while she gets angry and shames him. Anyone who crosses her on decisions or corrects her behavior becomes her new target.

We have been sharing a home with them now for almost 11months with almost daily outbursts, shaming, tears, and rage - from her towards her husband of 67 years. He is so afraid of being alone that even though separating them has crossed my mind - I think he would just dry up and blow away.

I have been on a simmer with her for years, and now most days, find myself doing what needs doing, emotionally disengaged. Her paranoid and distrust of anyone offering help seems so self defeating and I often feel sabotaged in trying to help either of them.

The triggers for me are the verbal rocks she launches at him all day long - ranging from a constant string of orders to shaming him for less than stellar follow through…

Lisa532

I grew up unaware that the gaslighting, narcissistic behavior, emotional abuse and selfishness were not a normal part of the mother daughter relationship. Then I had my own kids and couldn’t understand how my mother could have said the things she said and did the things she did. And now as fate would have it, I am the only one left nearby to take care of her as she ages and declines, in both her cognitive and mobility abilities. It’s hard. Most days I don’t want to be near her. She can reduce me to my 12 year old self with two words…and yet I’m 54 and can recognize what’s going on. Last year I was angry and resentful. I took it out on myself by eating and drinking in unhealthy ways. This year, with more acceptance and perspective, I’m no longer hurting myself when she hurts me. I don’t think I have any answers Merla, but know you’re not alone. I agree it is difficult to find others to admit to a less than Hallmark relationship with the LO they must care for. I’ve never felt close to my mom and the sad part is I don’t think she realizes that she built walls that will never come down. And so have I. I make sure she has healthy food, meals prepped, medications, paid bills, helpful caregivers and safety precautions in place. I call her almost daily, check the cameras, and visit 2-3 times each week. And although I’ve accepted this as a 3rd job, some days I still cry by myself in the bathroom. I hope you know your mom is lucky to have you. 💕

housefinch

I’m going to apologize in advance if my post is insensitive because it’s slightly different from your situations. The emotional fallout has been somewhat similar. My mom isn’t the PWD but rather the caregiver for my stepdad, who has moderate dementia. However, she has not adjusted certain parts of her lifestyle to accommodate his needs, for any number of reasons. Ultimately, though, it becomes selfish and neglectful towards him and puts him in unsafe or unfair situations he shouldn’t have to endure. For example, she has ignored the incontinence management recommendations and he is still in underwear and expected to manage clothing changes himself. She leaves him home alone at times even though she was told in writing 8 months ago it was no longer safe. She has read virtually nothing about dementia and hung up on me when I explained that he was past the point of reasoning, explaining, convincing, etc (they just moved to a CCRC and she thought she could keep explaining repeatedly why it was a good idea). I was trying to prevent a disaster when they moved and he didn’t understand what was happening. Her neglect towards him mirrors neglect of us as kids—-but I wasn’t aware of how neglected we were until I became a parent. I mean emotionally neglectful, with poor boundaries, very focused on outside appearances regardless of whether things were very dysfunctional behind closed doors, comments centered around physical appearance, weight, attractiveness towards men (I’m from a family of daughters), etc. She has minimal capacity to understand that other people don’t have the same priorities she has. It’s very difficult to watch someone force a PWD to go to restaurants, social events, etc when he has no idea what’s happening, doesn’t remember people, etc. It makes me very angry to see him trotted out like that.

Anyway, you’re not alone. I’m in my 50s and still struggling with the effects of being parented by someone like that. I hope you each can find some peace and balance as things move forward.

kmw11

Yes to all of this. I didn’t realize how abnormal my relationship with my mother was until maybe 6-7 years ago. I thought that I had to put her needs first always otherwise I was the selfish one trying to ruin our relationship. It’s always been her way or the highway. And now with her dementia I am bending over backwards to try to help her while taking even more of her abuse. All the while not being able to really stand up for myself. I have an awful pit in my stomach all the time and dread when I go to visit which is everyday, sometimes multiple times a day. When I’m not around her I am consistently worried about her, is she okay? Is she happy? I know the answer will never be yes. My life is full on consumed by this woman. I don’t know how to break free from the hold she has on my life.

Talking with others has definitely helped me process a lot. My husband has been extremely supportive and a great listener as I try to navigate through this crap swamp.

This thread could not have come at a better time. Once again I have found solace in knowing I am not alone. I wish you all the best on your journeys and hope we can all find peace in the end. Your life matters, you matter.

harshedbuzz

BTDT

Do not recommend.

Being called to rise and become caregiver to someone who didn't rise to the task of being the parent you needed and deserved is a special kind of suckitude. You end up with feces on both ends of the stick through no fault of your own.

The experience can feel extra isolating as most of the folks in support groups tend to really love their PWD leaving you to feel even more alone in this. Often the platitudes, like the ever popular it's the disease talking feel dismissive to those of us who have a lifetime listening to that same script.

My father and I never really got along. I came along too early in his marriage and life; he was in the service and rather than bond with me when home, he chose to compete for mom's attention. He kind of wrote me off as one might the first pancake made to test the griddle and was a much more doting parent to his mini-me who turned out to have similar mental illness. His geri psych thinks maybe he was bi-polar based on what he saw and family history. A friend of mind who is a Psy D and knew dad before grief, alcohol and dementia destroyed him thought he might be a high functioning sociopath. Materially I can't say I did without, and for the most part I wasn't physically abused but I was a good kid who he used to embellish his reputation as a "cool dad" and "cool teacher". He was serially unfaithful as a spouse but for the most part was handsome, bright and very charming to others until my sister died and it broke him. Once the social filter slipped, everybody else got an introduction to the person I knew he was all along.

I did support my mom during dad's dementia-- even prior to the official diagnosis they both fought against for almost a decade. He's mostly blown off the rest of the family and all of their friends, so it kind of fell to me to have eyes on. They didn't live locally, so I would visit about 5-6 times a year, for about 72 hours, by myself so I didn't have to worry about DH or DS getting caught up in his nonsense. Had mom died first, I don't know what I would have done. I suspect obtain guardianship and put him in a decent MCF where I could make sure he was cared for appropriately. In fact, I got my mom to agree to placement by informing her that I had a shovel-ready Plan B should she die/be hospitalized wherein he would be in a SNF before bedtime.

You need to do what works for you. It helped me, in the trenches, to focus on dad's past behavior as a manifestation of mental illness and his current behaviors as the intersection of the illness, addiction and dementia. Sad for him but temporary. Another thing that helped me deal was getting dad properly medicated. We worked with a terrific pair of geri psychs who crafted a cocktail of psychoactive medications which didn't sedate but did calm him to a point where he was mostly OK.

I don't know whether this will apply to your situation or not but many folks believe in dementia's progression being almost a regression to who they were when younger. When I was a kid, dad had a gaggle of old aunties who had doted on him growing up. His mom was a young widow who moved home where she had 5 younger sisters who treated him as a pet. They always talked about what a sweet and charming guy he was/is. At the time I suspected they must've been on crack. But as dad neared the end of his life, he did morph into a very different version of himself. If you consider than many mental illnesses don't manifest until puberty or young adulthood, it makes sense that a person who has regressed to 6-ish might no longer be under the influence of that illness. He was warmer and kinder and really looked forward to seeing me when I visited rather than being insulting and trying to get me to leave him alone. He was verbal until the end, and I came to see a different side of him for which I am grateful.

HB

Rottenkid

Wow,

I just joined this site recently because of the issues of dealing with my PWD. Your post @Merla hits so close to home for me. My PWD didn't raise me or my siblings. She put the 3 of us up for adoption when my brother was 4, I was 2 and our sister was 6 months. My brother and I stayed in the family so we have always known who she was and as grown adults have been around her on occasion. She has always been closer to me and when her husband passed away back in 2019, I did what I could to try and help her. In 2020 she moved to be closer to my son and I. My PWD moved in with us and when her place sold, she continued to stay with me since my place was big enough, so I could help take care of her. I didn't realize just how selfish she really was till she was living here full time. It has made me grateful that she didn't raise me. She was abusive to my brother especially before the adoption and it hasn't changed. She is a "my way or the highway" "I am right, your are wrong" extremely demanding person and the dementia has made it even worse. In the beginning, I couldn't tell if she had something going on or if it was just her abusive personality. My PWD had a full hip replacement in April and upon my insistence, she went into a rehab/nursing home. I thank God everyday that she did. Since she has been there, (unfortunately for the staff) the staff has seen first hand what I was dealing with everyday. Her mind has took a nose dive and she will never get to come back home. I have struggled with that feeling of not being able to accept that she won't be coming back home. I keep reminding myself that she CAN'T make me take her out of the nursing home (I don't want her back at home). I still feel like I don't get much rest at times because she responds to me better than anyone so when she is throwing a fit, refusing to take medication or totally out of control, the staff calls me to talk to her or go assist with her. All I know about trudging on in this...... Is ONLY by God's grace can I continue to do what I can to assist her. I am her POA and do the best I can....... I am working on showing her Grace as God has shown me, BUT there are days I want to just walk away and so NO MORE.............

God Bless each of you in your journey with your LO, PWD etc.

Lisa532

I’ve definitely identify with so much of what’s been shared here. Last year part of my healing involved distancing myself from my demanding mother. I look at my time with her as if I work for her and it’s an additional job…and the sad part is that the more this disease progresses, the easier she is to deal with. Let me say that again…as she becomes less herself and has less memories, she is not as high strung. And I can breath more. I still don’t want to be around her. And driving her to dr appointments makes me want to drive into a brick wall…but so far I haven’t.

Just curious…does anyone have siblings that are actually involved? Because I think having some real support must be helpful and I’m quite jealous.

Quilting brings calm

There are actually several of us here with difficult relationships and pasts with our parents. I could never have them live in my home. They are in an AL and I handle their finances and checkbooks, their medical needs and appointments, other errands, sometimes their groceries, call and visit regularly( not daily). It’s a struggle but there is no one else to do it ( two siblings, three step siblings. None of them help). You just do the best you can and you take steps back when you need to.

Mint

I do have siblings that help me for which I’m very thankful. Life can definitely be challenging.

harshedbuzz

@Rottenkid

That is some situation. I am so sorry for all you've been through but impressed by your grace and compassion. And your screen name.

@Lisa532

My only sibling died in 1994. It was her illness and death that led dad to alcohol abuse and his alcohol-related dementia. He also had Alzheimer's so he wasn't going to dodge the dementia-bullet.

I will say that my older niece was a huge help logistically when we were moving my parents closer to where we live. She helped me clean out the house in MD and get the personal items out of the one in FL.

HB

Rottenkid

@Lisa532 I do have a brother, but he doesn't live close enough to help. Our sister won't have anything to do with her because of the adoption. Plus she lives 2 hours away as well.

@harshedbuzz Thank you for your kind words. There are days that I don't feel like I have an ounce of grace and compassion. At times, especially before she went to the rehab/nursing home, I felt very much alone in this journey and the frustration was overwhelming a lot of the time. And the screen name......... my PWD nicked name me that about 35 years ago lol.

ALgal

With regard to siblings, my only brother passed away in 2019 and it was what kicked dad into high gear IMHO with his dementia. He lived about three hours from my parents and me… so assisting with his stage 4 lung cancer was always a long visit, as he had never wanted to relocate to be closer to family.

When dad started to decline, I had visions of being solo and helping him as had happened w my brother. So when my son offered help, we jumped through hoops to move everyone closer. My mother w Alz (who didn’t have a good relationship with him) has made what appear to be shrines to him in their bedroom and always tells me how great he was. Not so.

She has a habit of lying to the doctors about symptoms etc. so we go with her to give the whole picture. My partner is a retired RN and was telling dr of episode w her. She told him he was not allowed to speak because he wasn’t family. He has done more for them in the 10mos in this shared home than my brother would ever have done. She has a nasty way of lashing out at him…

Yesterday my dad w dementia told her something he must’ve dreamt… and in her twisted mind she believed it to be true and verbally attacked my partner - who has been so good to both of them. So now dealing w both parents, and the division in the house because of her false accusations. She is so paranoid and believes everything she is told by my father who has lost touch with reality - no matter how ludicrous.

XtinaWyz

My goodness. I'm in full tears right now. My mom has always been vain, narcissistic, self-centered and verbally and physically abusive. Despite ALL of that, I realized in July that her memory was failing rapidly, and I spent the month of August helping her to pack up and sell her house so she could move closer to me. During the process, she asked if I would move in with her. I agreed to, and I regret it EVERY. SINGLE. DAY. And I only moved in with her two days ago. She is one of the unhappiest people I know, and the elements of her personality that were troublesome before Alzheimer's have become exponentially worse. She puts on a GREAT face to the public, but behind closed doors, she is viciously mean and demeaning. We have a Zoom call tonight with an in-home care company (I work full-time and can't be available to assist her with errands and tasks) and she is adamant that she doesn't want anyone to come into her home. I told her to see it as more of a personal assistant role, and I've asked the facilitator for tonight's meeting to NOT, NOT, NOT mention memory loss or dementia in any way--otherwise, my mom will not have it.
As an aside, there is an issue with my mom's car that I had offered to help get fixed. The parts to fix the problem arrived today at the dealership, so I raced home to get her car key so I could drop the car off to have it fixed this afternoon. When I got to the house, she started screaming at me about how "we have to talk" and announced that I was taking up all of the drawers and closets in the house (I'm not). I was going to leave and get her car fixed, but I turned around, put the key in her hand and told her that if she was going to talk to me like that, she could do it herself. She said she didn't know where she was supposed to go, and I told her to figure it out herself. I don't know what's right or wrong at this point--I'm just tired of putting myself out there as the only helpful person in her life only to be treated worse than anyone else. It's overwhelmingly sad.

Lisa532

I guess it makes sense that most of us on here are dealing with this alone. My husband helps, but @XtinaWyz your partner sounds amazing. My mom was there a while ago. She accused me of convincing the doctors and my family that her memory is failing and she’s fine for the past year, up until a month or so ago. I’m the one who’s exaggerating and they believe me, not her. It’s amazing how she can blame me for her cognitive decline. But she’s never been able to be accountable so I guess the queen of denial must stay on her throne to the bitter end 🤷🏻‍♀️. I don’t live with my mom, a promise my husband and I made to one another long before we got married. I had to take the keys to her car over a year ago when she was hospitalized. She hadn’t been taking her medication (no thyroid, so that caused some big issues), she refused to go to the dr, then she fell and couldn’t get up or find a phone. She didn’t eat all day and had two big glasses of wine. She slipped out of her chair while trying to stand. I heard screaming her while checking in on the video camera after a few hours and called for an ambulance to take her to the hospital. After a very traumatic 48 hours which left her hallucinating, she was moved to a rehab for over a month. When she returned home I hired a morning aide, in addition to the aide I hired a few months before (to get her used to having in home help). I got rid of any alcohol, set up the meds, started meal prepping for her and refused to give the keys to the car back. These things I did to help protect her infuriated her. She accused me of taking her independence and holding her prisoner. This lasted from the fall until early this summer. By August she finally started realizing she has difficulty remembering things. Sometimes she still lashes out and blames me for her situation. Other times she’s blissfully unaware how much she has declined and just living in the moment. One brother calls her about once a month. The other calls once a week. Some of the grandchildren call every other month or so. Nobody ever calls me to ask how I’m doing, if i need help with anything or to check in on her deterioration. I work full time and she’s alone a lot…and I know that’s not good for her, but it’s hard to be around someone who’s been so nasty to you for half a century…it’s hard to not be triggered.

Anonymousjpl123

@XtinaWyz your mom sounds a little like mine, I will say that at some point living together may not be possible. For now, you may want to check out Al Anon or other support groups. Even if it doesn’t fit your specific situation, they can really help getting through the toxicity and pain or being responsible for someone who is abusive toward you.

I would not give her the keys and tell her to drive herself, but I completely understand where that came from. You have to hold onto yourself first, make sure you are getting what you need first (oxygen mask, as they say), and then you can focus on her.

You also may need to just hire someone to be with her during the day, whether she likes them or not. She won’t be easy, she most likely won’t get easier. You’ll have to find ways to detach from her.

I found a great therapist who has helped me enormously. That can help too. I wish you the best. This is not for the faint hearted.

melissad65

omg, I am astounded by our similar stories. I have really struggled with this too. My mother is abusive and narcissistic too. My father is a sweet man but an enabler who always chose to pacify her.

I am lucky they do not live with me - something I'd never allow. The setup of my home luckily means this is impossible given their physical limitations. And wouldn't be safe.

I have already been in therapy for years so will say my therapist has helped me a lot. It has triggered my PTSD. I am lucky some of my siblings and I lean on each other. This experience has also healed relationships between us, particularly my sis, and we can now share our feelings and talk more openly about the traumatic past too.

We hired caregivers but they fired them or were so mean, they quit. Turns out abusive people are abusive with caregivers. That's why they are now in assisted living. When they accuse us (and of course they do) we remind them it was actually their own behavior that got them there.

I am trying to live according to my values but also maintain some boundaries. Its hard. I don't want regrets but don't want to be abused either.

ALgal

@melissad65 I’m surprised to hear about the same abusive words and actions over and over in these threads - it’s bittersweet, to know I’m not alone, yet to feel bad that ANYONE (especially those who have opted to care for a LO w Alz) has to suffer through this.

OnlyDaughter123

I don't want to go into a lot of detail here on my situation but I would like you to know that you are not alone. It is incredibly difficult and there are a lot of things that come up. For me it's been anger, rage, guilt, sadness and sometimes regret for not being able to address some of the things that have happened. I'm in the process of seeking out counseling to cope with some of it. Also, my faith helps me to keep things in perspective, helping me to see beyond some of what I've experienced. Sending love and support your way.

Smilescountry

Hello! I am so sorry that you are going through all of this. When my father was diagnosed with Alzheimer's and it was also apparent that my mother was in earlier stages of unspecified dementia, the first thing that I did was begin therapy for myself. I am the POA/HCR for both of them, and I am also the one who lives closest. I have two sisters who help and have some authority, but much of the responsibility falls on me. My parents are very loving people and have been good to their children, but they are also very exacting and perfectionistic. They married young, those first years were very difficult, and we girls carry some emotional scars from those early years. I knew that if I didn't have some help that there would be "triggers" that would get the best of me while caring for my parents. Getting good therapy has been one of the best decisions that I have made. I have had to realize that I am, indeed an adult with grandchildren of my own. My parents are not going to harm me. I can have control over the situation. I have to take care of myself. I need times to refresh. While I see evidence of things that upset me when caring for them, I have to attribute a lot of it to Alzheimer's. Both parents are in a memory care/assisted living facility, and a couple of weeks ago something happened while I was there that was upsetting for me. I stayed away for two days. I called a couple of times a day while I stayed at home, but I just could not go back until I took care of myself first. And, yes, one reason that my parents are in assisted living is that none of us sisters felt that we could bring them to live with us. They like where they are, and we can still be involved in their care while still having some time for our own families. Everyone's situation is different, and I wish the best for you.

housefinch

@Smilescountry your post came at a good time for me. I have to have a difficult conversation with my mom soon (just posted about this). Bracing for WWIII because of her difficulty facing multiple realities. Thank you for reminding me that my life and my healing matter.

ALgal

Just wondering - when both parents have dementia - (mom is extremely difficult, Alz/paranoid/mean), is seeking guardianship common? This is a debilitating disease and people don’t recover… their decision making ability will only get worse - and both have letters of incompetency - I was awarded guardianship of both PWD last week, and you would think I had run off with all her worldly belongings!

It is a means to make sure things happen in their best interest… as they had wanted this ability to help to fall to me 5yr ago. From what I’ve read, there is court oversight, accountability, and I am not seeking any payment. Yet - I have already been accused by my mom of doing so many horrible things.

mantra of late: no good deed goes unpunished!

SusanB-dil

@ALgal - usually guardianship is needed for one, but I'm sure sometimes both becomes necessary.

@harshedbuzz as always, thank you so much for sharing. What you said hit home, in that my mother is nicer to me now than ever. Of course, she thinks I'm her sister, but it is a side of her I never had before. I wasn't treated harshly, but i guess 'distant' or maybe 'detached' would fit. We were never close, so her being nice actually feels rather odd.