My mom who is in early late stage of Alzheimer’s has been in a memory care unit for 5 years. We moved her while she was still cognitive enough to be involved in this decision and the change and transition while hard, was do-able.
She is an “active” Alzheimer’s patient who seldom sits but is restless and busy. Usually, when I visit she begs me to take her home to her mom. She doesn’t always know who I am, but she knows I can take her places and I love her.
Recently, she has started going into other people’s rooms and going thru their things and refusing to leave when asked. She also helps herself to food that is on other’s plates. These behaviors have understandably triggered a lot of negative verbal comments by her fellow residents, but recently escalated into physical contact by another resident, which was reciprocated by my mom.
She is According to a geriatric psychiatric nurse (mental age 2-4 yrs) is being discharged from her memory care unit due to her behaviors
She is on Medicare and places to move her are extremely limited...She does not qualify for hospice yet. When and if a place is secured, it will be a skilled nursing facility and she will have a roommate.
I am dealing with extreme sorrow over this situation and trying to figure out how to help her transition to these abrupt and radical changes that are coming during this later stage in the disease.
Please if if you’ve been down this road, any help or support would be welcomed!
Thanks for your input.
of. I worked with 2 social workers before I moved my sister into assisted living.
If you really want to rile them up threaten to call a news crew to film them while they throw your aged mother out. I am sorry you are going through this. I hope you can find a solution.
Yesterday afternoon, she called and told me she had been kidnapped, didn't know where "they" had taken her, but she was certain she was going to be killed. She also accused "them" of flushing her handbag with money down the toilet and putting her family pictures in the sewer. I tried to reassure her, but she would have none of it. She screamed that I was "treating all of this like a big joke when our whole family was in danger." She further informed me that she was cutting me out of her will and was going to haunt me for the rest of my life. We recently had her checked for a UTI at the ER - she was clear. Looks like the dementia is just getting worse. She has not taken a swing at other patients or the staff yet, but I'm kind of worried she might. My sister and I discussed last night and decided to consult her geriatric specialist. Hopefully, she can suggest something to calm Mom down before she gets into trouble and the memory care discharges her.
I would be worried that she now has a UTI, they can come up so quickly.
If this is just a stage and there are no meds that can help may it be a short phase, it must be terrifying to think you have been kidnapped and are going to be killed, then thinking these same monsters are after your family. Can you reassure her that help is on the way and get a nurse or family member to go rescue her?
Alzheimer's does not cause aggression. That is Frontotemporal Dementia FTD or specifically Behavioral Variant FTD or bvFTD
FTD is frontal lobe. FTDdoes not respond to medications that target the brain, even melatonin or any sleep aids.
Alzheimer's meds have adverse and dangerous affects.
Your doctors probably are not aware.
My wife suddenly became and autistic 2 year old at age 53, in 2006. The doctors could not find a cause.
I have care for her at home since. I had to retire from my career in 2013, at age 62, to care for her.
Only by a chance phone call to a social worker who's husband had suffered many years with FTD, did we have a clue. This was 2015, 9 years after the onset.
The university doctors jumped on it and confirmed, after they had already administered crippling Alzheimer's meds.
Christy has to be watched 24/7. She is hyperactive, will bump into walls. She is enraged by restraint. She is hand fed and hydrated with a turkey baster continuously, all day, often while she is pacing, head hung, drooling from the Alzheimer's meds.
Alzheimer's, memory care care, behavioral facilities, cannot accept FTD, only most don't know it until they have the bad experience.
She had been rejected from day care for aggression. She beat up the staff, drew blood on the director.
She was also denied the university's acclaimed geri/psyche ward.
Christy is toileted every 2 hours.
UTIs are the worst enemy, Constipation is the next.
Entertaining, occupying her is the greatest daily challenge. Her empty brain is curious and trying to re-connect, but the foundations have been erase.
She is a lot of work, but she has value. The fleeting moments of recognition, the smiles and laughter are worth it.
We have learned the triggers and remedies.
It is no more challenge than responsibility for a toddler.
I can do this for many more years.
Research FTD
https://www.alz.org/professionals/healthcare-professionals/dementia-diagnosis/differential-diagnosis/differential_diagnosis_of_frontotemporal_dementia
We had a few “goose eggs” and they were scary so I understand how sad it makes you feel.
My mom acted the same way. What finally worked was putting her in a residential care home. Usually a house that has 6/8 residents each with their own room & sometimes their own bathroom or only sharing with one other resident. You can’t get into too much trouble because it’s a lot smaller & the caregivers are right there with the residents. It’s a great care ratio & not as much turnover. Much easier adjustment for someone with dementia.
Don't know where you live but you might check into it. Some take Medicare, but even private pay will be way less expensive than Skilled Nursing.
Parenting parents is mot for the faint hearted. It’s very hard because even in a facility there are constant issues of all types. Take care of yourself! Your mom will continue to go through lots of
different stages. Take one day at a time but be proactive in all situations.
Find a good hospice service before you need it. Same advice for planning your mom’s funeral. If you have things in
place, you will feel much less stress.
while still, mobile, mom eloped and put up a fight - we had to switch her meds - seroquel wasn't the right one
now that she's immobile, she still cusses and will pinch during diaper changes - we just roll her top up over her hands to slow her down a bit -
I have private caregivers with her during the day
- unfortunately, during certain stages, meds are the only thing that will keep them calm enough to handle
it is a very difficult situation to handle
Has mom recently been evaluated for hospice? That would bring in some additional help for her.
When mom was evicted, hospice recommended a smallish care home. All residents there had been kicked out of previous facilities. Hospice had recommended this place. Mom did better, the resident caregiver ratio was lower and it was cheaper then the memory care she was in.
These are impossible situations. Mom had to have private caregivers come in on and off for the entire two years of facility living. That was an additional charge on top of the facility fee.
My suggestion get her facility to request a Geri psych evaluation at a psych unit. Hope they can get her meds adjusted appropriately. And call a well reputed hospice or several of them to see what recommendation they would have on how best to deal with this and to ask if they would have any recommendations for where she could/should go now.
Spend as much time with her as you can during this transition. She recognizes you and finds familiarity and comfort in your presence.
None of this is is your fault.
This past weekend I visited my 95 y/o MIL in MC. My husband told me prior that there is a resident there that literally “gets in his mother’s space”. Well I didn’t know what he meant until the visit where there is one resident, Maria, that yes, gets into everyone’s space at meal time and all day long. Maria is independent In ambulating but otherwise her poor mind is gone.
The staff watched Maria everywhere she went to assure she wasn’t getting in too much trouble. When she wandered the staff would go fetch her, disengage Maria by diversion or whatever, and led her away, guiding her to do something else. And Maria was restless and up and walking all day long.
The staff were pretty good watching Maria to get her out of those episodes where, yes, she did go into a resident’s space whether during a meal and afterward in the great room. That’s what MC staff are trained to do. I am wondering why your mother was given the boot and why her MC can’t handle her and am hoping they did try to make an honest effort to work with your mother’s issues.
But if its deemed your mother is a danger to herself or others then her current MC has a responsibility to try to keep everyone safe.
Did Management at your mother’s MC infirm you of mother’s behavior prior to the discharge letter? I am thinking yes if you’ve brought her to behavioral therapists & psychiatrists for medication titration.
I hope the transition ti SNF goes smoothly. This is a sad situation.
If it's an ALF, it's not unreasonable for the facility to come to a judgement that they cannot provide your mother with the level of care she needs to keep her and others safe.
If it's an MCU, in which she has been resident for five years, you're in a better position to argue. It is the specialist job of an MCU to handle the challenging behaviours associated with dementia, and it is not in your mother's best interests to undergo a complete change in her environment. Moreover, she is clearly physically well and therefore has no need of a Skilled Nursing Facility: if they're going to discharge her to another setting, it must be appropriate to her needs.
Which is it?
Wow! Just wow CM! 😯😯
I tried the link, it did not work, but googled and found it. Thanks. Read it and it sounds as if a new test would be required for each medication. I imagine that eventually based on genetics that the test will determine which med will work for each patient. Wonder about insurance coverage for this type of testing.
This has been on going over months and really accelerated when a new resident moved in who tried to micromanage my mom which didn’t go over well. The relationship between the two became volatile. My mom put a strangle hold on her. A few days later she shoved my mom down and her head hit the floor. A large goose egg but nothing broken. Shortly after these two incidents the discharge letter came.
Moneys already gone so she is Medicare/Medicaid.
I am most interested in learning how to help her transition from having her own room in Assisted Living to a new environment in a Skilled Nursing home with a roommate. Any tips for helping later stage loved ones transition would be appreciated.
Looks like LTC is the next step. Once her money is gone, Medicaid could take over. I would also ask about meds.
I'm so sorry tthat you are going through this terrible situation.
My question to you is if your mother is on medication and or if she might be helped even to a small degree with a possible change with it? I am sorry you are having to endure added stress with a situation that is so very difficult for those who are the ones left to look after aged loved ones.