My mom has dementia. She lives alone and fiercely wants to continue that way. She is not eating or showering, she’s frail and her home has lots of stairs. She is very combative and will not consider moving to assisted living. I live in another state and I’m her only caregiver. I visit monthly despite having a full time job and small children and I’m very stressed and burned out. She recently had to go to the hospital because she couldn’t make it up her stairs. I want to move her closer to me but I’d have to force her against her will and she says she will never forgive me (we’ve always been close so this is hard). Her doctors support me but I’m so guilty and upset about forcing her out of her home. Where do you draw that line? Should I force her or just respect her wishes even though I fear for her safety?
I used to take care of a gentleman with dementia who's daughter thought it was a wise idea to allow her parents to 'age in place' in their own home, and that hiring me for 4 hours a day would be enough to keep them safe. She was very wrong about that; someone with dementia requires 24/7 care in a safe environment. Anyway, Jim wandered out of the house one night at 3 am looking for 'his home' and fell in the street, hitting his head & suffering a subdural hematoma. He was found a few hours later by a neighbor who called 911. Jim died the next day in hospital and his funeral was a very sad day for all of us.
Please don't apply rules of 'normalcy' to an abnormal disease like dementia and get mom placed asap. Normally, you'd listen to your mothers wishes & agree to them. With dementia, you override mothers wishes and do what's in her best interests. It's better that she's angry with you and safe than she's happy with you but dead from an accident that could have been prevented.
Here is an excellent 33 page booklet in free download format that I suggest you read to get an idea about dementia in general. It's called Understanding the Dementia Experience by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
My own mother is 95 now with advanced dementia & living in a Memory Care ALF herself for the past almost 3 years. I will tell you this: she would have been dead long ago if not for the excellent care she's gotten there by the awesome staff of caregivers that work 24/7 to see to it; they love her and make sure she's comfortable & safe, and now, so does her hospice team. I thank God for them every day.
Best of luck.
Find the best residential care site in your area, and then do whatever you have to and get her there. Make clear to the staff that you will welcome the intervention of a geriatric psychiatrist to provide medication if necessary.
The alternative to making THIS CHOICE is at least as bad as making the choice itself. In similar circumstances my mother fell and shattered a hip, and was total care for the 5 1/2 years that remained of her life. They were VERY GOOD YEARS, for which I will always be grateful, but the time between the broken hip and her placement was a horrible mess for all of us concerned.
I too loved her dearly, but only too well knew her shortcomings and threats as well. A SAFE, CARED FOR SHRIEKING THREATENING MOTHER would still be my choice, a hundred times over. She will say whatever occurs to her to startle you, but once the grandchildren can visit and she has learned her way around her new setting, you will hopefully be surprised how content she may become.
I know I was. You are NOT ALONE in your struggles with this. Many of us have had similar situations.
Guilt is SO USELESS, and SO WASTED in your situation, and it was in mine.
Do YOUR BEST, and be content with your choices. Sometimes the only choices we have are poor ones, but made with love and concern, they can prove to be better than we’d originally thought.
I am sorry to hear you're going through that. I am too, my mom is so against assisted living. She showers and uses the bathroom on her own, but cannot cook or clean her house and also has dementia. She does not want to leave her home and I struggle with a lot of guilt trying to move her. She is Korean and the assisted living does not have anyone Korean there, so I know she is uncomfortable since most people can't understand her when she speaks English. It makes me feel really bad, but I am so burnt out on being her caregiver (we have no other family) I am at the point that I am having to make it court ordered for her to move (our guardianship has limitations that I can't freely move her) or turn over guardianship to the state through APS which hopefully is a last resort.
I try to remind myself that her doctors say this is what's best for her and that I do not want to fall under neglect because I didn't act on what professionals say is in her best interest or if something were to happen to her when she's alone when I knew she shouldn't be but i didn't do anything. It's a hard reminder but I tell it to myself all the time. I hope you can find comfort in whatever path you take!
For some problems there are just no good solutions. You do what helps her but is not onerous to you and your family. Your family has priority over your mother. If it feels overwhelming, you are not imagining this. It is. But just eat the elephant one bite at a time and you will get through it. It took me almost 2 full years to deal with my MIL with memory loss and stepFIL with Parkinsons, who were in debt up to their eyeballs, and only she assigned a PoA, and he was completely uncooperative. I just made it a goal to get at least 1 thing done every day, no matter how small. Forward progress, that's the goal.
You say she has dementia: does she have an actual medical diagnosis? Or is this your assessment from observing her? You say you don't want to "force her against her will" to help keep her safe...even if her will is being lead by the mind of someone who is losing their ability to work from within reason and logic? So you see, her will is no longer based in reality. She's a danger to herself.
Even without a diagnosis you can do something in her best interest: call APS for her county and get her on their radar as a vulnerable adult. On your next visit you can make one more attempt to lay out the argument for her assigning you as her PoA: because the next health incident will mean the social workers in the hospital won't let her go back home because she'll be considered an "unsafe discharge" because she lives by herself with no one to care for her. If this happens the county will pursue guardianship and then the county will make all her decisions for her and manage her affairs, not you. You legally won't be able to do it. Maybe this will motivate her, maybe not but it's the truth and worth a try. I'd download the PoA documents and take them with you in the chance that she decides to do it (Legalzoom.com or Rocketlawyer.com). You will need to know what her state requires to finalize the PoA (probably a notary and 2 non-family witnesses, which can be done at a bank). Make 2 copies of the doc so that you each come away with an original.
If she is relentlessly uncooperative then there's really nothing you can do except keep calling APS and wait for a crisis where she goes to the hospital, then you make sure the discharge staff knows she is an "unsafe discharge" (and they will put the screws to you hard to become her caregiver, but don't commit to that). Speak with the hospital social worker to see what her options are. Most states' Medicaid programs do not cover AL, but some do. There is also an Elder Waiver program that may help cover AL or MC. Medicaid + her SS would cover LTC if she financially and medically qualifies. I wish you success in getting her the help she needs and peace in your heart whatever the outcome.