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MichelleLeeR Asked January 2022

Dementia - Struggling wanting to be in any kind of caretaker role for my mom. Do I have a right to be angry?

My parents divorced when I was 9. I am an only child. My mom remarried and is still with my stepdad today. They have no kids together and he has no kids from previous marriage. I live about 45 minutes from them. My dad remarried two more times and was divorced from his 3rd marriage by the time I was 19 years old. I lived mostly with my dad growing up, until he moved to California when I was 18, then I went home in the summer from college and stayed with my mom and stepdad. Then I dropped out of college but I did return about 5 years later got my degree and much later got an MBA. None of my parents are college educated. I paid for most everything in my life - college after the 1st year (parents could not afford to pay any longer), my car, living on my own at 19, paying for everything. Growing up I feel like my father raised me, and I feel like my mom never really wanted to be a mom, never really seemed interested in the goings on with my life...just did not take of care of me like a mom, she was not nurturing, supportive or motherly. About 2 years ago or so my mom was diagnosed with dementia - and I would say she is now in late stages, and is no longer capable of being at home (with stepdad) and can't take of herself - she needs 24/7 care. I think my stepdad has been blind to how bad she is - she is non communicative (yes, no only, a few other words....she calls me by his name), soils herself, can't properly clean herself, etc...she has fallen once or twice but no one witnessed it - we just see all of the bruises all over her. Now she is in the hospital b/c we thought she broke a hip (she did not), had a UTI, has kidney stones. But the hospital wants to try and release her home. My stepdad and cousin (she is a social worker professionally) are trying to find her a nursing home / assisted living place. My point for bringing all of this up here - is I feel like my cousin and my stepdad are trying to guilt me into feeling bad for not doing more - I do visit her in the hospital, I spent 6 hours there on Sunday and 1.5 hours there the other day and plan to visit her tomorrow again. She is about 40 minutes from me. My point is I can't financially help in any way, plus I can't take responsibility for finding her an assisted living space. I am married and w/two stepkids here half time. I am breadwinner at home right now - I pay the mortgage, etc, and do stuff for my family. I have a 200K+ student loan bill (yep you read that right). My stepdad's only responsibility is my mom - they have been married for ~35 years. My mom retired at 55 (from a low income job) so she could then stay at home in the chair watching soap operas (that is how I recall it). I guess my stepdad supported this. Plus they did not take care of themselves physically - don't exercise or have the best diets. When my stepdad's mom need care/caretaker - his sister took over that - she was of sound mind and pretty capable of taking care of herself until she died in her late 80s. But I will be working until I am 80+ to take care of myself and my husband (I am trying to save for retirement for the both of us...he does not have it; he owns his own construction business). Plus I am going to need to take care of my dad - he has no one else (no other kids, no nieces, no wife to help). I feel resentful that the comments at me are intended to make be feel guilty. I am resentful and angry, at both my stepdad and mom (for different reasons). Do I have a right to be???

JoAnn29 Jan 2022
This is how I look at it. Cousin is a SW and should be able to find your Mom a Long term facility placement with Medicaid paying if Mom and StepDad have no money. She also knows what resources are out there. There is no reason you need to put out any money. A small % of Moms Social Security will go to a Personal Needs Trust and can be used for her personal needs. My state its $50 some States more. You have all good reasons why you can't be involved other than Mom not being there for you. Your stepdad is responsible for Mom. You do what ur are comfortable with. Guilt is self-inflicted. No is a one word sentence.

lealonnie1 Jan 2022
We all have a right to our feelings, whatever they may be. Carrying around resentment, however, only winds up hurting YOU. Your mother was entitled to retire early & "then stay at home in the chair watching soap operas" and both of them have also been entitled to not exercise or have the best diets, same as the majority of people. Dementia is a HORRIBLE affliction to have and I wouldn't wish it on my worst enemy; my mother has advanced dementia herself and it breaks my heart to see what she goes thru and what she's deteriorated into. She lives in Memory Care AL and I manage her life for her, even though she hasn't been the best mother in the world. I think she did the best she could given her capabilities, or lack of capabilities, I should say. I have some resentments of my own which I'm working on, so I understand where you're coming from.

Don't let anyone 'guilt' you into doing anything you don't genuinely WANT to do. Do what comes from your heart and nothing more.

Best of luck

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Burnoutgirl Jan 2022
Caregiving is much more than a full time job. It is 24/7. I did it for a year for my mother with Alzheimer's. Even if you have help 8 hours a day, YOU are still "on duty" the next 16 hours. And if the aide calls in sick and the agency can't find a replacement, then YOU are it! I did the grocery shopping, prepared all her meals, gave her a snack at night, picked up her medications, doctor visits, bills, and medicare paperwork. Not to mention that I slept with one eye open because she would get up several times a night. And God help you if she falls or hurts herself or has any ache or pain. Then the caregiving is doubled! I love my mother, but I had no life when she lived with me. I work from home and have no kids and it was still impossible. Mom is now in a nursing facility. She actually likes it better because there are lots of other people around and they have activities. At my house she just watched TV all day. Once she didn't know me as her daughter I felt ok about moving her. Now all I have to do is check on her every day to make sure she's clean, fed and happy. Best of luck to you.
NinjaWarrior3 Jan 2022
Wow. Your situation sounds exactly like mine.
Tulips Jan 2022
Our emotions, especially anger, tell us where we need boundaries. You need not explain yourself to others. I learned the hard way that other people’s thoughts (about me) are none of my business. They didn’t walk in my shoes. I could talk myself blue in the face and some will never get it. I no longer attempt to prove my worth to insensitive people. Reading Brene Brown’s work was supportive in my process.

Decide what your boundaries are and don’t waste your energy expecting others to understand. There’s a wonderful book entitled Boundary Boss by Teri Cole. Her free videos could empower you to set limits and not get caught in codependent behaviors that will make you exhausted.

Also, a therapist could help you understand how you became the adult far too early and how that burden can haunt adult relationships. We are not responsible for other’s choices nor should we martyr ourselves to our family.

Do what is within your emotional, financial & physical limits so that you can be a peace. Other’s peace is theirs to find. You can have empathy without causing self harm. You can decide which parts you can do and decline the rest.

As they say, don your own oxygen mask before you put yours on someone else.” This process with your mother’s health decline could be an opportunity to heal old stories and learn to love yourself more.

Learning self care is not selfish. It is necessary and healthy. Ultimately, this journey is about you loving you. You are worth it. Even if nobody told you as a child that you mattered, you do. I wish you strength and I send you loving kindness as you navigate this difficult passage.
Kate2608 Jan 2022
Similar to my experience/response, but more eloquently put! :)
BarbBrooklyn Jan 2022
Michelle, just to emphasize, you have NO legal or moral responsibility to provide care for your parents--not your mom who disn't care for you OR your dad who did.

Your responsibility is to yourself, your spouse and your kids. The obligation goes forward, not backwards.

You are kind to visit mom, but if stepdad and cousin ask for more help the answer is "I can't possibly do that. I have to work to pay my bills".

The discharge planner at the hospital should be giving you all a list of NH's that will accept your mother. You might be able to help by visiting some of them on the weekend.

BarbBrooklyn Jan 2022
Michelle, just as a reality check, I had a mostly good childhood and saw NO need to shipwreck my life when my mom needed care.

I helped arrange AL/IL/NH care with my brothers, but we all had mortgages and families.
MichelleLeeR Jan 2022
Thank you, BarbBrooklyn, and others for your responses. And I am certainly not trying to come across as insensitive and uncaring, I have boundaries and limitations; I can provide support some, I am just not open to being an open-ended resource and I don't like to be made to feel I should be that. In any case, my cousin found a rehab facility (which is covered by Medicaid as I understand as long as my mom show's progress - she will be there for 90 days) while she can't do a lot of things anymore, she can still feed herself. Thanks for you for your support.
partyof1 Jan 2022
All you can do is all you can do. Right now you do not feel that you can effectively take on the role of caretaker. (regardless of all the other stuff)


My name here is Party of One. I too am an only child, divorced and not as able to work as I need to be because I am dealing with my mother. She fell/broke hip a month ago, did well in a stint to rehab, but is failing miserably once she got home. Like in three days miserably. My vote was assisted living from the get go but relented to give her a chance. I was right and she is back in the hospital as we type being assessed for placement. Here's the catch...everybody always looks at you, judges you and makes comments if you are not ALL IN on the keep mom at home REGARDLESS team. You life is your situation and its not up to everybody else to decided how much of caregiving you can handle. I had requirements before I would even consider having mother back home to rehab....and she's declined to the point that its not sustainable for me. Or her.

You don't have "that type" of relationship with your mother...and that's okay. And honestly, her not being a "mother" is okay too..,difficult for the child who needs more, but not every woman is cut out to be a mother. Mine really would not be considered warm and fuzzy....I can't recall even hugging her after age five. She's just not that gal. It is what it is.

I would simply state and repeat, I'm sorry but she needs much more care than I can help with and I don't have the level of expertise needed to deal with. Of course, they are hoping someone will pitch in....and you just can't be that person.

funkygrandma59 Jan 2022
Your cousin and stepdad can only make you feel guilty if you allow them to. So STOP!!! You've done nothing wrong. Your mom is NOT your responsibility, nor will your dad be should the time come.
Your mom now requires more care than her husband or you can supply, so let him find the appropriate facility to place her in(while applying for Medicaid if necessary)and get on with your life.
Your husband(and any minor children)and yourself are your only priorities right now, so let the chips fall where they may, and when mom gets settled in her new care facility, you can visit her as much or as little as you'd like.
And as far as you having the right to be angry, well of course you can be angry at the notion that is being implied from family members that your mom is your responsibility. But perhaps you may have to direct some of that anger at yourself for falling for their nonsense as well.
Stay strong and do what's best for you and hubby and let your stepdad do what's best for your mom.

Beatty Jan 2022
Your parents are responsible for their own retirement. They are responsible to arrange care for themselves (until not able to) then their legal spouse, POA or Guardian steps in. Hospital social workers often help with placement if things get to hospital-rehab-can't go home stage.

StepDad may have been a bit naive of Mom's dementia level. He may be overwhelmed. In which case, he seeks support & guidence (which he is doing via the cousin social worker).

None of the above has any relevance to your life.

If StepDad has ideas or expectations that you must come save him from his responsibility, I would say that is misguided. If he wants you to swoop in & save your Mom & make everything easy for him, I'd call that wishful thinking. If he thinks you owe this to them, to quote a movie "tell him he's dreaming"

You can feel however you want. I can understand being very angry. Anger is your boundaries speaking up! Telling you that it is not ok. Telling you to stand up for yourself - as you are doing. Keep to a simple message with him & any other family who may try to guilt you. (No need to explain your own obligations, whether Mom raised you or not. That's massively important to you, but others won't listen).

StepDad is Mom's spouse & it's up to him to arrange her care now.

I might add, it's ok to feel sad too. If there is a tiny piece of yourself that wants to grieve for the Mom you didn't get + your current Mom as she declines, do so. But you don't need to attempt to save her or him.

I wish you well.
MichelleLeeR Jan 2022
Thank you, Beatty. I feel little bit like my stepdad and my cousin (albeit she is SUPER resourceful, and she got an unfair shake in that she took care of her mom and grandmother (which happens to be my mom's mom too) before she put them both in homes - so her life was impacted...so I do feel empathy for her...and do try to cut her some slack )) guilt me to swoop in. I tell her she can get some of the info and talking points and then hand over to stepdad to do the brunt of the work (with her guidance should he need it). I do feel sad for my mom's situation - it must feel very painful and frustrating, etc and I would not wish it on anyone.
Countrymouse Jan 2022
Well, with a life like yours, do you have a reason for resentment and anger? I should say so!

But are you sure your cousin intends to make you feel guilty for not doing more? I assume she knows the backstory. My guess would be that she thinks there isn't much time for you to make things okay with your mother and she doesn't want *you* to miss out.

Doesn't make your cousin right, of course, but it's another possibility behind her comments.

As for stepdad, as for funding your mother's care - [rude word deleted]. What's stopping your stepdad making decisions on your mother's behalf? He's her next of kin, not you. And cash-strapped children (by which I mean most standard income people) are NOT responsible for their parents' financial planning.

Er. That also applies to your Dad, though, by the way. This is a man who ripped through three marriages in two decades (and dropped you flat on your face at 18) and now has nobody? I wonder why. Care about him, of course, by all means, and give him what support you feel able to. But do not sacrifice yourself to his mistakes.

I do not mean to apportion blame. Quite apart from the fact that of course I do not know either of your parents and can't form an opinion, even those with better information would do well to hold back. But what you yourself can certainly judge is what resources you feel able to offer without injury to yourself or your husband or your future, whether that's time or work or any other kind of input.

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