Help after Mom died, 10 year caregiver daughter, 62, now destitute.

[ChristineD860877]

Mom was diagnosed with Alzheimer's over 10 years ago, I became her POA when a fall as we were going to physical therapy, landed her in the ER so I could be sure she wasn't injured.  Mom couldn't recall any of her medical history, not one thing.  I was established then and there as her POA, medical and financial.  It began a road we travelled with care, kindness, sharp eagle eye for her needs, for more than a decade.  I was 50 when we began the journey, and 62 when she died a year and a half ago.  

I assured over the years she had right setting, freedom, and that meant moving from her apartment to independent living, learning that wasn't a fit as she was overwhelmed and did have difficulty cooking in the newer kitchen, a small stove fire, and she had to move.  She came to my family home with me for 6 months as I researched the options, she did qualify for assisted care that was subsidized, the waiting list was a few more months, and she could move there.  It was an incredibly happy time for my mom, friends, groups, outings, she was so happy for over 8 years.  The financial, medical, care oversight was extremely difficult for me, Mom was a former teacher, did not have social security, her pension was small, so much money and time went out to her care year after year, I tried to get support for helping from family, my 5 brothers either didn't understand or didn't care about the real needs--it was years of trying--I gave up, finally, to avoid worse feelings.  

So, yes, my marriage also suffered from the constant pull and tug of mom's needs, my career's needs, while trying to be the new grandma I was as well.  It was okay enough, my exhaustion and self care never adequate, until February 2020, mom got an infection on her face which required hospitalization and two minor debridements.  This ended up with the need for rehabilitation in the nursing homme.  Then Covid, then chaos, then misdiagnosis, and my mom was terrified, and nursing staff were not able to care properly for mom, I brought her home with full home care support. My husband decided if she was there, he was divorcing me, he did, I had two years of being reked by lawyers, caring for mom in a rental home with support, We did it, she chose hospice, had a peaceful passing here with just us and phone hospice support, but since she died, I'm a wreck.  I must mov from this home I rented for us, I've had grief, illnes, injury, and finally took early retirement as I keep trying to pqrt time work.  I have a place to move with my friend, a perfect and large townhouse owned by her daughter, I do not have the resources to hire a truck, get things in order, and packed by May 1st. 

I am seriously concerned I may be heading for the nursing home without help.  Are there financial resources to assist family caregivers as they rebuild life after years and years of caregiving, years of giving everything, and then it bottom's out?  I need help, it looks like I'm just a lazy slob, but, I am being treated finally, for depression, my long term therapist also died during Covid, it has been so so so hard.  I want to be happier, this home feels like my mom's tomb, all we ever had here were her final years, Covid imposed isolation, and I need help, some support, just to get on my feet and move toward something new.  Any immediate ideas are so appreciatied.  I'm in Illinois.  

Christine D.  

[agoyer]

@ChristineD860877 You've had some good suggestions from @JaneCares and @Bluepup.  I too have been financially devastated by caregiving and went through bankruptcy after more than a decade of caring for my parents and my sister, so I have a lot of empathy for you. I'm fortunate that I found a way to somehow keep working, and now I'm working hard to recoup and save for retirement. I'm 62 now, and my Dad died in 2018 (Mom and sister died in 2013/2014). 

I'd urge you to try to find a way to keep working a bit longer if you can. And contact the area agency on aging to ask about supports, qualifying for Medicaid (now or in the future), and ask if there are any groups who help older adults and/or family caregivers to move too! My sister just moved recently and she moved as much as she possibly could in her car so the movers only had to move the furniture and bigger boxes, that helped cut down the costs, but it was still $1500. You might contact a local high school service club, fraternity, local business service group, Kiwanis etc who might take on your move as a service project! 

Not enough attention is paid to what happens to caregivers after caregiving is over, so thank you for sharing your story and I hope you'll tell it wide and far. People need to know and more supports need to be put in place.  

Sending you support and hugs - you might want to join the AARP Family Caregivers Discussion Group on Facebook and pose your question there - we have over 14,000 members who are all or have all been family caregivers - they always come up with good suggestions! 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving

[JaneCares]

Hi Christine. Wow, you have been through so much. You gave your ALL, literally, and were an amazing, kind, highly skilled caregiver for your mother.  I WISH there was a fund for a person like you to get on your feet again. I'm afraid there is no such thing. There are other sources of support for you though, and as Bluepup notes, your dear friend. 

On thing I would look into is how much you would receive from early Social Security Retirement (at age 62) so that you would have some basic income. You can still work while you receive retirement income, and you can find out how much the ceiling is for income. Get yourself moved, and consider giving away things you don't need, or if possible, have a yard sale and recoup some of the money so you have money for movers. Settle in, and get a part time job, perhaps at your local area agency on aging, because, gosh, you do have so much knowledge!

I am so sorry to hear your therapist died of covid! Please find yourself a new one. There should be a community mental health center for you in Illinois. You might get on a waiting list, but hang in there. Keep calling. Get on a 'cancelled appointment' list. You need support. I'm guessing you are eligible for Illinois Medicaid, and if there is a managed medicaid option, their behavioral health folks can help you find a counselor.

You sacrificed a great deal for your mother. I wish your brothers would now contribute to helping you get set up. Even $100 from each brother would help. Is there anyone who can help with mediating between you all? A minister, another relative, uncle, aunt? You gave so much and now your need is great.

Keep writing, okay?

Hang in there,

Jane

[Bluepup]

Hi Christine!  I understand, (a similar situation for me.)  It is so good you have your friend and the opportuity to move with her to the townhome! As for packing to move, I say donate everything you possibly can --  most cities have charities that will come and pick up items.  Minimize and start fresh and new as much as you can!  Many places that have UHaul or something similar can give you the name of someone, sometimes a son or brother,  to help you lift and load for a minimum cost and you can drive it yourself for a minimum charge. What a blessing to have your friend.

You may feel better when you can get that done and are starting a new phase of your life.  You may even be able (eventually) to look at it as a new adventure.  You could certainly be a help to the many who could benefit from what you learn from your experiences along the way.

Wishing you all the best.