Two years ago my sister was in crisis, overwhelmed by every decision, overcome with anxiety and having a major panic attack.
Long story short...I took her to her PCP for a medical work up, then to a geriatric specialist for testing, who also ordered an MRI. She was diagnosed with vascular dementia, and probable Alz.
I am her younger sister (by 12 years), and I'm a retired assisted living caregiver. I also had been our mother's caregiver for the last 2 years of her life (she died in 2019).
Fast forward to today...
Once I took on all responsibility for every detail of my sister's life (any and every thing that triggered the slightest stress for her), she calmed right down, her dementia symptoms stabilized, and she's been living a pretty contented, stress-free life. I still see signs of dementia fluctuate day to day, but she manages most ADLs on her own, needing some verbal reminders, or coaching here and there. She's doing quite well.
I, on the other hand, am feeling quite certain I cannot continue on this journey with her. I have tried to talk myself out of the FACT that my physical and mental health is being effected. I believe I have little left to give her...I feel used up.
I know what lies ahead: her inevitable deterioration (a front row seat to witness the living death of dementia), having to place her in MC or a SNF,
applying for medicaid, cleaning out her
apartment, the continued vigilance making sure caregivers are meeting her needs...(you all know the seemingly endless drill) - until the absolute end where you are left to scrape whatever is left of you off the floor to try to get through the loss and grief, and recover something of your own life yet again. I just have a strong sense of knowing I don't have what it is going to take to see this journey through with her.
I feel disappointed in myself for having these limitations, that I am letting my sister down - and yet, I also feel my own survival is at stake here. I don't want to sound overly dramatic about it, but there is a constant, growing desperation (depression ?) I feel about
my own future well being if I attempt to continue on as we have been.
She has a family...4 sons and 4 DILs, and many adult grandchildren. Initially, when she was in crisis and most in need of someone to take charge, none of her kids were willing to do that. I know I'm going to have to approach them again and tell the I must be relieved of this responsibility.
If no one is willing...I think it might just kill me to have to go the APS route (again with the dramatics, I know)...but she Has a family!
The first year, many made the effort to visit. This past year, barely anyone even bothers to call her - or me - to ask how she is doing. I that feeling - no, the REALITY - that I am doing this completely in my own has contributed greatly to my burn out.
Anyway, I'm hoping for some kind advice from those who have been there on how to lovingly and resposibly dis-engage myself ...
AND how to cope with the guilt,
because I know there will be mountains of it.
Thank you
you need to have a family meeting and give up the legal aspect of this. It should not be your responsibility to do this when she has kids, they are taking advantage of you and need to take over the legal aspect of this
you aren't abandoning your sister, you love her and will continue contact but you do need to consider your health and mental health.
you are a good sister and I am sure she is so appreciative of you. I have taken care of my parent's the last four years in assisted living and it has been hard enough.
her kids need to step up to the plate
It will not be simple or easy, I know.
My heart is still heavy, but I will find a way forward for my sister, and for myself.
I just have to take it one step at a time. The next right thing, I think, is to contact my local Aging and Disability Resource counselors for some in-person, state law appropriate guidance. Surely I am not the first, or only, person who has ever had to do this.
Please know that, in my weak moment, your reaching back out to me made a tremendous difference.
Blessings and ((Hugs)) to you all.
I think you are a natural caregiver. That's why you stepped forward with such a helping heart. Your nieces & nephews appear to have been ok with this, ok to say 'Aunt has this' as they stood back.
I feel like the responsibility *should* lay with them.. BUT.. not everyone makes a good caregiver or caretaker.
Very similar situation happened to people I know. Sister was close & became the main care person. 'Kids' far away/some reluctance/different view points. Family meetings held to ensure everyone was informed. An agreed plan finally emerged & now one adult child has indeed stepped into the role of Care Manager. This had to suit her too. Daily attendance, supervision or assistance would have swamped her life so AL was the answer.
I hope you are able to find a way to the next phase so sucessfully too.
If you have a faith, would there be a support service through that? Or a licenced Social Worker via your council? Having a 'third party' to mediate family meetings can be really useful. Can steer the responsibility-shy nieces/nephews away from push-back.on you to the actual aim: yours Sister's care.
SHE HAS HER OWN KIDS... YOU TOOK CARE OF YOUR AND HER MOTHER
I TOOK CARE OF MINE.. and my sibling tried helping..
BLESS YOU!!
" Children..Yes,kids.. You are what? Adults? OK then... YOUR MOM NEEDS YOUR LOVE AND LOVING HELP.. TAG, IT's YOUR TURN TO FINISH: THE GAME CALLED:; LIFE.. remember that boardgame? " Start figuring it out.. YOUR MOTHER NEEDS YOU..."
I am sorry, they need to learn how to do this now before their kids turn their back on them..
My friend's sister called her one day... K... I am retired !! happy happy, joy joy..
K replied.. "WONDERFUL... Now it's your turn to take care of MOM :) "
What? huh? Me? ohhh ok. you've been taking care of mom for the last 10 years... I suppose I can move her closer to me and and her grandkids, etc...
what a wonderful concept... Share the experience. share the love, and share the labor and share mom... Get the grandkids to actually know who she is before its too late... LET THEM CELEBRATE HER ON WEEKENDS WITH PARTIES, MILKSHAKES MUSIC AND DANCE... :)
Kids think they don't need to visit their geriatric parents? How sad....
See an Elder Law attorney about resigning you POA. As your Sis is not well you cannot simply resign to her and leave her floundering. As well, you will need to pass on your record keeping to a new POA.
Call a family conference or send a family letter announcing you will be giving up your POA. Ask family if there is a member who may wish to be Sister's guardian or conservator (she cannot, once she is incompetent, assign a new POA, so it's now more complicated). If there is a family member who wishes to do this they can see the attorney for this. Your POA will allow you to be paid for the attorney needs by Sis's funds.
Nobody has to serve as a POA but when you take on POA for someone who then becomes questionable disabled by dementia it becomes a court release from fiduciary duty in most areas. So time to see an elder law attorney about this.
In some areas I have heard that APS can help get a new guardian appointed tho I have no experience of this other than hearsay.