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I have been taking care of my mom since my dad died 6 years ago. I stay with her 2 weeks out of every month. I have a husband and a family, and it’s taking a toll. My sister and my brother do nothing, absolutely nothing! They just live their lives. I am worn out. She is showing signs of dementia, I’m trying to get guardianship. But when I take her to primary doctor or neurologist she tells them she does everything by herself. She doesn’t. I have cameras and when I am not there she walks around the house lost. I am so worn out that all I want to do is sleep and de-stress when I get back to my family and it’s causing problems with the husband. She needs assisted living. But I feel so guilty because I promised my dad I would take care of her and let her stay in her home. I just can’t continue living from suitcases. She is stubborn, gets mad at me when I remind her to take meds, etc. I just don’t know what to do anymore. I love my Mom, but I have no life and my family is being sacrificed. Any suggestions or help would be appreciated.

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You and your dad had no crystal ball when you made your promise to take care of mom and let her stay in her own home. Were you the only one to make this promise to dad? If it came down to it, WOULD your father expect you to give up your husband and children to keep your promise to care for your mother and let her stay in her home? WOULD he expect you to give up your health or even die to keep the promise of caring for mom and letting her stay in her home? If your father's answer to either or both of these questions would have been YES, then he was being totally unrealistic and selfish - and therefore why should you feel guilty for not keeping your promise.

You elected to do this for your mom - which was your decision. Your siblings decided to lead their lives and not sacrifice themselves to mom.

It is time to get your life back. Who watches over mom on the 2 wks you are at your home? Do you keep you siblings up on what is going on with mom? Do you have medical and/or financial POA for your mother? If not you, then does one of your siblings have these documents?

Your duties are taking a toll on your own family and you. Have you considered having a heart to heart with your siblings about mom? Let them know she is no longer able to live at home without additional assistance or the need to be in AL? They may do no hands on care - but are they concerned about how her life is going? Do they talk to her an any kind of regular basis?

In the short term, if it were up to me - I hire in home aids to make sure mom is eating and hydrating, taking her meds, the home is safe and clean. Of course the cost of these services would come out of mom's pocket.

I'm sorry you are in this position - but as I see it your husband and children should be your #1 concern. I don't want to be unkind or harsh, but you don't owe mom care - you do it because you want to - not because you promised your father you would. Just as you and your husband should not depend on the care of your children when you are old and demented; your parents were responsible to make appropriate plans for their old age - which did not include being dependent on their children.

I am not saying to abandon you mother - but changes are needed to make caring for mom less onerous on you, your husband, your children or your siblings. Check with the Area Agency on Aging in your mom's area for resources available to your mom.

As far as the DR office, my mom and I filled out the paperwork. We put down she didn't do her own finances, she didn't do her own meal preparation; she didn't do her own laundry. According to the nurse it was: can she write a check; can she make herself a sandwich; can she do laundry - well laundry with difficulty because of back issues; she could write a check if she had to and yes she is quite capable of making her own sandwich.

I hope you and your family can find an equitable resolution - just know no one will be happy, especially your mother as she is NOT going to get what she wants; but she should get what she NEEDS - primarily safety. Also, I'm sorry if this posting sounds harsh - its not my intention.
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bundleofjoy Aug 2021
dear cweissp,

hug!!

you wrote:
”They may do no hands on care - but are they concerned about how her life is going? Do they talk to her an any kind of regular basis?”

my guess is:
...no, they aren’t really concerned. they leave everything to OP (the worry, stress, what to do).
...and they probably do call just to say hi (that’s fun and takes no work)

you wrote:
“You elected to do this for your mom - which was your decision. Your siblings decided to lead their lives and not sacrifice themselves to mom.”

it’s not OP’s decision.
no one wants to sacrifice their life.
if siblings were helping out, tasks would be divided/manageable.

if siblings abandon their parents, you’re forced into a situation.

OP is kind, has a conscience, so OP doesn’t abandon the parent/parents.

what’s the best way forward?

sometimes hiring people is a good idea.
...disadvantage: sometimes they’re thieves; incompetent
...must try to find good caregivers

sometimes facility is a good idea
...disadvantage: some of us, if placed in a facility, would totally lose our will to live (also we might die from corona outbreak; other outbreaks, home can be safer sometimes). also the point isn’t to live many years, miserable in a facility (sometimes, better less time, but happier/content at home).

the more money you have, the more options you have.

i wish us all courage, and i hope we all find good solutions to make life better for our LO and for ourselves.

be kind to LO, be kind to yourself too. time flies. don’t sacrifice your life. i really hope good solutions are found!!

hug!!

bundle of joy :)
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Been there. Unless you have medical or monetary POA all you can do is tell your siblings you will visit once or twice a month and hard as it is, walk away. BUT create a plan by talking with local Aging care, doctors and social workers what you are doing. DCFS for seniors can assign a caseworker. Resources are out there. Tell your siblings what the plan is and as hard as it is, walk away. As hard as it is to believe, having a plan was the best thing, it meant I was DOING something to help advance care, rather than on a treadmill of guilt.
It took a major medical incident for the locals in my family to see what I had been seeing and going thru.
I physically could not be there for almost a year due to surgery and rehab. I did have POA and was on her bank account, so I was able to put her bills online (brother did not know how to do this, nor wanted to). The rest of the care fell onto the locals.
You need to have your spouse by your side, have a meeting with your siblings and tell them what you plan on doing. That you need help, and if they want to honor dad's wishes then they need to step up. I know how hard it is to break out of your child-sibling family dynamics, but it can be done with the help of your spouse. AND they may surprise you and were just waiting for you to ask.

Tell them that you are arranging in-home care. Do your research on costs of in-home care options. Call her doctors for advice. Once you have options and a plan, tell your mother what they are. By all means, put ALF on those plans. Have her check them out as an option. My mother got to choose her room which helped. Use the line that your family needs you and you have to be with them, so here is what we (siblings in the we) will do to help you.

Then hard as it will be, walk away knowing that you did your best.

YOU WILL FEEL GUILTY! Own it and if need be, join a support group or get therapy. I did everything I just suggested. the hardest part was owning up to how I would feel guilty, but I had the support of MY husband and children. It will be sometimes two steps forward and one step back, but at least you are on a path and not a treadmill. My mother is in an ALF, she is getting worse, but it was the best for HER and ME. I have said this before: The woman who gave birth to me is my mother, my mom who raised me is gone.

You are not alone and lean on the family in your home. They are likely waiting for you to return, they need you more! AND whatever you do, NEVER make a child or loved one promises that they may not be able to keep. Our children have been told NEVER feel guilty for the decisions you may have to make if we lose our ability to be rational.
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If you promised to your dad that you would "take care of her and let her stay in her home" but then 6 years into it you discovered a sink hole was opening up under the home, would you still "let her stay in her home"? Of course not. No one knew about the sink hole, so it's no one's fault. Yet there needs to be a change in plans to protect everyone concerned. Just the same with the "caregiving promise" as no one could anticipate your descending into caregiver burnout and the crisis it would cause.

Please do not feel guilty, since your exhaustion, thoughts, and emotions are not immoral or unethical. Maybe what you are feeling is grief. I've been on this forum long enough to learn that most participants (with personal experience) will tell you that your siblings are under no obligation to participate in the caregiving. No one can assume another person into this role. THAT would be immoral and unethical. You were assumed into this role by your well-meaning father. And, you love your mother. You are in one of the most common quandaries of caregiving. But now, how to solve it?

Your husband is your first priority. In no way should you be endangering your relationship with him to care for your mother. The caregiving arrangement needs to work for both parties (care receiver and the giver) or it is a broken model. It's not working at all. You will need to put aside the promise because the sink hole is opening up and it would be irrational for you to continue on as if nothing is wrong. A decision will need to be made. At first it won't "feel" good, but it will DO good. Your mom will resist it, but that's part of the broken brain of dementia and age-related decline. You must look beyond this to the solution. Your siblings have opted out of helping in the current form, so the only other solutions are to hire in-home help (which makes you an employer in the eyes of the IRS and comes with all the reporting and withholding and taxes of an employer) or transition her to AL or MC. Make a decision, then inform your siblings (who may not like it either but too bad unless THEY want to do what you're now doing, which would be silliness). Then move forward and make a little progress each day. May you gain wisdom, courage and peace in your heart that you are not letting down your parents: you are doing what a guardian does and working in their best interests. Blessings to you.
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Who is with her when you aren't there?
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Time for the pros to step in and take care of mom in AL. She's only going to get worse. You've done your part, the best you can, gone above and beyond, and you should feel good about it, not bad. Six years is a long time. Save yourself now!
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