Can someone give me reassurance about our decision of Assisted Living/Memory Care for mom?
My mom (90) with dementia, dilusion and paranoid behavior. She was wandering out in cold at night and about to drive; police took her to hospital; transferred for TDO and treatment at behavioral health center. Their evaluations and observations are that she is "improving" but still has dementia, paranoia although cooperative. She wants to go home and hire care (she has refused or cancelled care/assistance in the past; but told me today (I talked to her on the phone to try and "prepare" her that I will come for her but not take her back to her hometown) she will cooperate and have in home care. I have located a wonderful memory care facility 1/2 mi from my home where I can visit often and help her reengage in life activities (church, dining out, shopping,etc) which she hasn't done in her hometown now (no friends, neighbors, family nearby). I live long distance and work full time so caring for her full time or part time is not an option for me.
I spoke with mom today as they want to discharge her next week from the hospital. She wants me to come and get her but exploded when I told her I was moving her to my state and she was going to a wonderful place for "rehab" to continue getting better. She snapped out of her dementia (so to speak) and was very angry and lucidly declared she wants to go home and get in-home care in her hometown. I know she "thinks" she will be in more familiar surroundings in her hometown; but nobody visits her, calls her and she can go weeks without leaving the house. Neighbor says she is not locking door, leaving garage door up, wanders around and frequently confused and angry when approached. She hears voices. This is our 3rd police visit to her home in 5 months.
I am getting POA copy; but there has been no competency hearing and I wonder if she will take me to court or her medical records (primary care physician, recent hospital stay, police visits of recent) will support my position of moving her to memory care.
She is very adamant (this has been ongoing for yrs) that I just want to "put her in a home". I just want her to be safe and nearby so we can have a relationship. If she returns to her home even with full time care, she will still be isolated and I can't be there to supervise or make sure she's got good caregiver.
I've got to make a decision this weekend on which way to go. My gut tells me, move her where she will be safe and I can monitor her care close by. My heart tells me do what she wants (and if I do that, I'm going to walk away from this). If I choose the latter, I will arrange for the care and walk away. I no longer intend to rescue her.
If any of you have been here or know of others who have faced the same, what advice would you give me?
I have the same questions Joan does regarding what the medical team is saying. I know it is difficult to be at a distance, but if you can leave messages for the social worker and a doctor to call you this weekend that may provide some additional input for you.
I was able to keep my husband at home for the duration of his dementia, but I told all of our children early on that if anything happened to me their father could not live on his own. I strongly believe that once a person is beyond the mild early stage (which often means once it is diagnosed) he or she should not live alone.
OK. Your mother SAYS she is OK with that and with having in-home care. My cousin was able to arrange that for her mother (who did not have medical problems -- "just" dementia.) She hired ladies from the community to be with her mother in shifts, 24/7. My dear aunt thought these women were coming for a social visit. I was there once visiting when one caregiver arrived. "Why Betty," my aunt said in surprise, "how nice of you to come. I've got a fresh pot of coffee and some lovely cookies. Do come and sit with us!" These were women from the community and not really "strangers" and my cousin lived about 20 miles away. Even under those circumstances she was always juggling schedules and making alternate plans (including staying with her mother) when one of the caregivers were sick, etc. Eventually she did move her mother into the community nursing home. So a person with dementia can stay at home with sufficient help and with someone to supervise that help. I think it also helped that Aunt had no chronic medical problems and that she was not paranoid and was generally pleasant and cooperative (and playing hostess!)
Based on past behavior, I'd worry that your mom might get into a paranoid rage and fire all her caregivers and not let them in the house. Then what? Or that one of workers takes ill suddenly and can't cover her shift for a week. What then? My cousin had a hard enough time working with people she knew from twenty miles away. Given your distance I wonder if your mom would need to hire a care manager.
Which leads me to a practical question. What can your mom afford? Full time caregivers plus a care manager is not going to be inexpensive. Does she realize that? Once she sees what it costs will she have a fit and fire everyone? And the memory care place you have found -- will they accept Medicaid if Mom uses up all her resources? If she has plenty of resources to last another 10 years, then these questions may not matter so much.
If it were my mother I think I'd insist that she move near me. I don't know how much power I'd have to "insist," though. POA does not convey power over her person (that would take guardianship) and you cannot move her based on the POA document. So, what else do you have to help you "insist"? The strength of your personality and your power of persuasion. From your report of her response to your phone conversation, that might not be enough. :-) So having a doctor and/or social worker on your side might be a help. You also have the power of an ultimatum. "I'm only coming to move you near me. If you are not moving, you are on your own." (If you do say that, make sure the hospital social worker knows that.)
What if she sues you? What if you get her to the care center and she raises a loud fuss and wants to leave? I think if she wants to fight you on this your next step might have to be to have her declared incompetent and to become her guardian. So it would be very helpful to know whether doctors would support the claim of incompetence.
Gee, this is really, really hard. I am so sorry that you are forced to make a decision on such short notice. Do your best to make a good decision and then don't beat yourself up for it. Which ever choice you make you are going to have regrets and second thoughts. You can only do your best.
Do let us know how this progresses.
I know you want the best possible care for you mother and are concerned for her safety. What do the various doctors etc involved say? Do they say that she is capable of living alone? Are they willing to discharge her to go home? Or do they feel she needs to be in a facility. Can they be the "bad guys" saying she needs more care than she can get at home?
I think I would foliow my gut instinct. Can you get the backing of the medical personel who have been treating her? Another person who might help is a social worker attached to the hospital. Have you discussed it with the police and the local Agengy for Aging? I know in the same position my mother would be furious, but so far, thankfuly, she has been pretty realistic about what she can cope with though she does not want to go to a nursing home, and she does still want to be in control of all decisions. But she does not have dementia, or delusions. I agree you cannot keep rescuing her, so the better choice to me seems to be to place her where she would be well cared for,. and where you can visit. Do keep in touch and let us know what you decide, i certainly support you in whatever you choose to do.
Hugs and prayers - Joan