Please forgive this lengthy post, but I desperately need counsel, and you are the only group of people who would understand. Last November my mom, who suffers from Multiple Sclerosis and A-Fib, fell and broke several ribs. She was hospitalized, contracted COVID, and after four months of hospitalization and rehab facilities (fell while in rehab and broke her hip), has returned home a different person. In that short time, the previously somewhat forgetful woman who was able to take care of herself and live mostly independently (I manage things like finances, housecleaning, groceries, etc.), has been primarily confined to a wheelchair and has lost the cognitive ability to remember most things for longer than five minutes. Notes must now be left to remind her to take her medicine, how to make a cup of coffee and what buttons to push on the microwave (although she still won't eat anything she has to heat up). Although her regular neurologist had never diagnosed her with any major deficit, while in rehab, she was diagnosed with moderate to severe dementia (likely Alzheimer's), and it was recommended that she not be allowed to return home by herself. I felt I owed it to her to at least let her try, and she actually manages to do fairly well for herself (or at least the bare minimum). She sleeps much later than she used to, but has been consistently able to get up, transfer to her wheelchair, toilet, dress, and brush her hair and teeth by herself. She remembers to take her medication as long as I keep a sticky note attached that reminds her how to use the dispenser. She has an aide who visits three days a week to assist her with bathing and a RN who checks on her twice a week. She also has a sitter for roughly 6 hours/day Monday - Friday (and some Saturdays), but for the most part she is perfectly content to sit on the couch all day watching Hallmark. As for the negatives, she gets no exercise, no mental stimulation other than from her caregivers or myself and doesn't eat or drink like she should. She is incontinent and doesn't always practice good personal hygiene, so there is a concern that she could potentially make herself ill. I also understand that she is never very far away from falling, forgetting to take her medicine or forgetting to eat and/or hydrate enough. I work in law enforcement - a job that commands the majority of my day, but I am able to monitor her on the camera system that I had installed. It does a lot to lessen my anxiety, but it's difficult to relax when no one is with her. I find myself preoccupied and am constantly checking to make sure she's okay. Now, her primary sitter has given me notice that she will be leaving to take another job opportunity in mid-August and the fill-in sitter has no desire to work full-time. Reliable and trustworthy caregivers are extremely difficult to come by in my area even through the more expensive agencies, and my DH is adamant that I need to sell her house (I have POA) and move her into AL. When I try to discuss it with her, she just cries which is heartbreaking. To make matters worse, I have found that her house will require much more work than I had anticipated, and as a result will probably need to be sold "as is". Now I'm worried that even if it sells, there won't be enough to keep her in private pay AL for more than a few years. Will she outlive her money? I have no idea, but the thought of having to move her twice makes me cringe. Conversely, if I allow her stay at home until she HAS to have 24 hour assistance, I have to come up with the money to do the most necessary repairs, and then hire and pay for another full-time sitter which she definitely won't be able to afford. Also, if she falls again, I may be looking at a SNF rather than AL being an option. I have my back against the wall here, and what seems to everyone else like it should be an easy and clear-cut decision is beyond difficult for me. Either decision hurts someone. What would you do?
Until I found this forum back in January, I felt so alone! I can't tell you how much it has helped me to know that so many other people are going through the same things. Thank you again for taking the time to reassure and validate. I can't express how much it is appreciated.
You say yourself that you're not able to rest and relax when you know that no one is with her, and have to continually check the cameras, so wouldn't it make more sense to have her placed in the appropriate facility where she will receive the 24/7 care she really needs, and you can rest in that knowledge, and have peace of mind?
Why don't you get your moms needs accessed by the Office of Aging or Council of Aging, as they will have social workers that can help you find the best fit for your mom, and walk you through the necessary steps?
I wish you and your mom well.
That said, you wanted to give your mother a chance to go back home & try independent living. You did that, and you see that it's not really working. Being wheelchair bound, needing sticky notes to know how to work the coffee maker & to remind her to take meds, no recognition of the need for personal hygiene, never being far from falling, and the like is enough to tell you that life at home is not working. Just a diagnosis of severe dementia/Alz. ALONE is enough to know that she needs more care than you can afford to provide her 24/7 in her own home. Not to mention, it's nearly impossible to GET good help 24/7 inside one's home. The home itself is in need of repair, so what you have on your hands is an untenable situation that requires your decision making abilities.
Managed care is really your only option here. Life isn't always about what we 'want' but often about what we 'need'. Your mother suffered a life changing set of events and now finds herself in need of much more care than she may want or be happy acknowledging she needs. She cries at the thought of AL but the REALITY of AL will likely turn out to be WAY better than what she has imagined in her mind. The stigma of the House of Horrors and all that nonsense, right? In reality, AL living is like a nice hotel; activities, 3 meals a day in a nice dining room, friends to make and socialize with, gardens to wheel herself around in, movies to watch, etc. Not the dungeon she's envisioning but a nice apartment with someone to clean it FOR her and to make the bed and wash the sheets along with her clothes. A simpler life, in other words, where she won't need sticky notes to remind her of things or be nervous about what she needs to do or to remember.
If her house is sold and the proceeds only buy her a couple of years in AL, so be it. It will be a fine couple of years at that! Once the money runs out, you'll apply for Medicaid and find a decent SNF to place her in and that's that. I'm in the same boat with my mother who's $$$ will be running out in early 2022. She's been in managed care since 2014 and in Memory Care since June of 2019 with moderately advanced dementia now, and wheelchair bound with afib herself (amongst other things). There is NO WAY she could ever live alone, even with help coming in, yet she thinks she's perfectly fine! Denial is not just a river in Egypt, as they say. As her POA and only child, I get to make the decisions she likes to cry about. It's MY job to keep HER safe. I will be applying for Medicaid myself on her behalf soon so I can get her placed in a good SNF when the time comes, if she's still alive (she's 94+ now). It is what it is. Acceptance is the key to everything. If your mother won't accept it, you have to, so at least one of you has the plan in place.
Placing your mother is not 'abandoning' her. It's a plan to keep her safe & well cared for, properly cared for, in a nice environment where you can go visit her as you wish. Go visit some ALs in the area and see for yourself what I'm talking about. Go from there.
Best of luck to you!
I so love to read your good sense advice and the adventures with your mother. Bless you.
I would check into board and care facilities. It is a smaller, homie environment and most of them all people to stay for the rest of their lives. Severe aggression is the only time I have seen anyone get evicted. They are far more cost effective and you can find ones that take Medicaid when the money runs out.
Of course your mom cries, it is a very sad situation for her. Tears are okay. She will adapt to her new home. She will be able to do what she wants and have someone there 24/7 for her.
This is by far the hardest thing that an adult child ever has to do for their parent(s). I found it harder than death. Because I am making a decision about their life that nobody wants. Nobody wants to have to go to a care facility, nobody wants to give up their home, stuff, autonomy...unfortunately sometimes that is the only choice.
You will get to be her daughter and provide her with enrichment activities, love and support and just be able to breathe again. As hard as it is, it is the best decision in this situation.
Best of luck finding the best facility that can meet her needs and make her feel okay with her new season in life.
Check out AL/MC in your area to find an appropriate fit. You might also contact the Agency for Aging in your area, they may be able to assist your search. There are evidently also residential care where your mother would live in - like a group home - I don't know much about them, but hear of them being out there - evidently a smaller setting and supposedly less expensive than an AL/MC facilities. There is one AL facility in my area that will take medicaid - they require the resident to be private pay for 1 year - now this was before COVID - don't know if they still take Medicaid.
My parents initially moved into IL but as my father had a falling problem, they were considering moving across the street to AL. My husband & I sat down - looked at what they money they socked away and what was coming in monthly. I figured they could probably live in AL for about 6 years. My biggest fear was dad - he was 5 years older than mom - what if he had to go to SNF and mom was still alive. - Well it happened, dad was 91 and was failing - he no longer wished active treatment and qualified for hospice and when he go too weak needed to go to SN. Luckily dad got on medicaid (the approval came in a couple days after his death) and mom still has enough money to live on.
I'm sorry for your mom's tears at the thought of moving - she is grieving and I'm sure unhappy - and, oh my, what strain her brain has been under - none of that makes it any better. Try and present it as an adventure with new friends and activities. If worse comes to worse - blame the dr. saying she has to go there to get stronger - and when she is strong enough she can go home.
Lets face it - the fall risk is all too real. - My father fell constantly - due to undetected strokes (at the time). Problem he was very stubborn so the falls continued - my saying was he fell once a week whether he needed to or not. He at least was in a facility where assistance was available. I'd hate to think some night your mother would get up in the middle of the night, fall, and lay there until sometime the next day when someone came to check on her.
Blessing to you and your family.
Note: AL are not required to accept Medicaid waivers although most do for someone who has been a resident for at least 2 years. If your Mom can afford 2 years in AL then she could then apply for Medicaid and not have to move.
Mom did really well in AL, socialization, medication supervision, housekeeping, laundry, 24/7 attendance, it’s a pretty sweet deal.
You have already alluded through several statements that your mom can not or will not keep herself healthy. She needs others to help her to stay as healthy as possible.
You have also alluded that your mom is not safe to be on her own. She probably has undiagnosed osteoporosis - all the falls and broken bones point in this direction. She may have developed dementia - there are several types and she has risk factors for developing a couple of them. Please have her evaluated by her primary care doctor for all her medical issues. Do not be surprised if her doctor makes a referral to a neurologist (for evaluation and treatment of dementia) and/or a geriatric psychiatrist (for evaluation and treatment of mental health issues).
The best option for your mom is one that allows her needs to be met reliably by others and that she is never alone. Options include:
Adult Day Care - usually a nursing home or independent provider that provides for all the needs of the adult during the day. She will still need somebody with her at night.
Home Home Aide or Caregiver - usually receives an hourly wage to make sure their charge is fed, clean, and helped with any mobility issues throughout the time they are there. Many will also do light housekeeping. Most are not qualified to give medications.
Residential Care - Assisted living or memory care - check with administrative staff of several facilities near you. Ask about their services and costs. Also ask if they will file for Medicaid if it becomes necessary.
As for the home, there are realtors that will buy homes "as-is" and will even give you a check on the spot for the home. Make sure to clear out all valuables. You can sell furniture online (Craigslist) or contact a person that will buy the entire contents of the home.