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bobn8r Asked May 2016

Should he stay or come home?

My 82 year old father has Parkinson's disease, diagnosed 15 years ago. He voluntarily moved into assisted living facility. After being there 4 days, he decided he wanted to come home. The facility moved him into the "Gated community" area, so that he would not walk out to driveway and road area. This is not what he signed up for and now he has significantly lost ground with mobility and "dementia" He wants to come home now and is angry with my step mother for not taking him home. The rest of the family is distraught, they feel he was "talked into this decision" and are worried that he is declining so fast. I have been trying to come up with viable solutions to take care of him and keep him safe and try to get him home. Am I living in a fantasy land? He has lost a tremendous amount of weight too.

linna81 May 2016
I have a similar situation, my grandma didn't like the facility, and I have a big house, so we let her come visit with us. I used a medical system alert, especially for the nights, and it did works for us. I found it on reviewsbee. After you work out his diet, maybe this is the best way to keep you calm.

Sunnygirl1 May 2016
Oh, I wanted to add that I would discuss your dad's nutrition with the staff. Do they ensure that he is escorted into the dining room for meals and snacks? All of the places that I am familiar with do that. And they note what is and isn't eaten. I was notified when my cousin did not eat her meals or snacks in AL. If that continues for a day or two, his doctor should be consulted. Sometimes, he may be assigned to a table where he is not happy They can find him a new table with others he feels more comfortable with. The staff can work to make his meal time and snacks a good experience.

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Sunnygirl1 May 2016
It's understandable to evaluate other facilities, but I would keep in mind that with patients who have dementia, it's difficult for them to keep up with glasses, remote, etc. They often will place them in odd places. Even if they are locked up at night, during the day, they can be placed in a waste basket or put in unlikely locations. The resident usually has no memory of what happened.

I think I might immediately focus on your dad's mental anguish. It sounds like he is uncomfortable. I agree about the psychiatrist evaluation, but even if you can't get to one of them quickly, I'd discuss his condition with his regular doctor for help.

I know that when my cousin was properly treated for anxiety/depression, she really relaxed and was able to be more comfortable in her Secure Memory Care unit. If your dad is wandering, being in a secure facility may be in his best interest, even if he doesn't like it. I'd keep in mind that often patients with dementia aren't happy in any place, even at home. They may wander from their own home for no apparent reason. Protecting them around the clock is time intensive and very involved.

My cousin is in a small Secure Memory Care unit. It's in the building with a regular Assisted Living facility. It has few patients and a higher staff/resident ratio than most places, since it is Memory Care. It isn't fancy, but has a secure outdoor area, two nice sitting areas, supervised activities and warm staff. Lost items have been an issue, but I've never heard of any long term care Memory facility that doesn't have those problems.

BarbBrooklyn May 2016
Absolutely, you need to get him seen by a geriatric psychiatrist. Explore other options, sure, but if he is delusional, no move is going to fix that.

gladimhere May 2016
Adjustment to a care center can be very difficult especially for those with dementia. Care at home often becomes completely overwheming for the caregiver that does everything alone. One os my sibs, the one with POA, also thought mom would adjust in a few weeks, we are now a year later, and mom still has not adjusted though more manageable. It took a geriatric psych hospitalization in the beginning to get her meds figured out to control her behaviors to make her more comfortable. This, unfortunately is very common when someone with dementia moves to a facility.

Rainmom May 2016
Your poor father - and seeing him so frighten must be heartbreaking for you. Even more so I stand by my advice to get him to a geriatric psychitrist. I can not stress enough the huge difference it made in and for my mother. Mom sleeps more now than she did but I honestly think that is due to her winding down physically - not the medication. When mom is awake she is mentally clearer than she's been in a long time so it's not one of those situations where she's being medicated into zombie-like complacency. If you can do it, please give it a visit to a geriatric psychitrist a shot.

bobn8r May 2016
Thank you ALL for your upfront and honest answers. I truly appreciate them.

My dad was moved from assisted to "gated" care at 4 days, but he has been at the facility for 17days.
When he entered he weighed 152 pounds. Today he weighed 130 pounds.

When he entered this facility they also informed us that we were to not have contact with him for 7days, 10days or 14 days depending on who you spoke with.
I called and checked on him, but did not get to talk to him until 7days. He has had a visitor almost daily. I have stayed with him for several hours, because he is scared. He is delusional now. People are going through "the doors" and being taken into the "music room" and being murdered. Then they are being carved up and being fed back to them. And he was really upset that they had done this to a baby, because " the baby didn't deserve that."
I don't try to reason, I just let him know that no one is being killed, and that he is safe.
I realized after visiting the other day that "the baby" was a doll that was sitting on a couch in a hallway. You know the kind with soft body and plastic head, hands and feet, the eyes that open and close. I discovered this trigger while walking with him the other day, and he reached down and put his hand out to allow the baby to grab it. I showed him and discussed that the baby was a doll, I then held the baby and removed it from the hallway and informed the staff that the doll was a trigger for him.
While being there he has lost a hearing aid, a lens out of his glasses and the remote control to his TV (2x).
I had spent a significant amount of time with my dad prior to his admission to this facility. I have spent weekends with him over the last 3 months. He did have some days better than others, he did have hallucinations. We have adjusted meds prior to this but not with in the 3-4 weeks from his admission.

I have since explored other facilities and have learned a lot more. I am trying to evaluate them from my dads perspective and not by all the bells and whistles.

Rainmom May 2016
It took two months and a medication over-haul done by a geriatric psychitrist to get my mom to "adjust" to being in a nursing home. Seven months later mom is on hospice care - the only meds she takes are pain killers and the mood meds the psychitrist prescribed. YET - mom is now doing better than the day she moved in. Mom is finally participating in activities and is somewhat pleasant to visitors and staff. A few weeks ago, in a rare moment of clarity mom told me she knew she was where she needed to be. So yes, four days is way to short a time to start having knee jerk reactions to your dad's agitation. The best thing I ever did was take mom to the geriatric psy. Can you get your father to one for a proper diagnosis regarding dementia and medications to calm him? I was able to get my mom to go by telling her "they are coming up with new medications to help with memory" - and wouldn't she liked to be accessed to see if there is one that would be right for her? Slow down, don't knee jerk react and carefully consider your next move. Keep in mind that once dad is back home, the only thing likely to get him back out would be a crisis of some kind.

pfontes16 May 2016
Everyone's right - 4 days isn't long enough. He hasn't been there long enough to see what they serve for Sunday dinner! This is a tough transition time for all of you.

See what you can do to "make a deal" with him...30 days? 60 days? 90 days?...and we'll re-visit the question. His wife surely needs a break....I have family members with Parkinson's - the range is huge from not great to awful. When my folks moved into an independent living, we asked them to at least give it 1 year and if they didn't like it, we'd look at something else. Mom didn't like the place because it wasn't HOME (it was never going to be home, really). At the end of the year they weren't so unhappy that the alternatives we showed them looked better.

jeannegibbs May 2016
Four days is too soon to make a judgement about how he will (or won't) adjust.
Four days seems unlikely to be long enough to "significantly" decline in mobility and cognitive skills. All dementia has good days and bad days. That he is having bad days while he adjusts is perfectly understandable.

He lost a tremendous amount of weight in 4 days? Huh?

Wandering is common in Alzheimer's Disease. I don't think it is as common in Parkinson's (I know it is not in Lewy Body -- which is similar to Parkinson's). So I'm wondering about that behavior. Did he leave the house and wander when he was at home? Or is it just that he is used to being able to come and go as he likes? I can understand why he feels he didn't sign up for secure memory care. It may be what he needs to be safe, but I understand his feelings about being tricked.

StepMom has the absolute authority to say whether he comes home to the house she lives in. She apparently decided that she cannot continue to care for him alone. Most couple with one having dementia reach that point.

Could you take care of him? Can he afford lots of in-home care? Are you home all day (don't work away from home)? As Babalou says, most dementia patients reach a point where they need 3 shifts of caregivers. Can you arrange that at your home for your dad?

How recently and for how long at a time have you spent time with your dad? I suspect the "drastic" changes you are seeing "in 4 days" really have a much longer history than that. Persons with dementia can "showtime" for short periods. That is they can, with great effort, put on an act of "normal" behavior for a doctor or a visitor that they cannot maintain for a whole day.

(It was very frustrating to me that my sisters only saw my husband at his best and couldn't figure out why his dementia was so stressful to me. Many caregivers have this experience. I wonder if that is your SM's experience. She has had to cope with his symptoms 24 hours a day. She KNOWS the nature of those symptoms and her own limits.)

Parkinson's Disease with Dementia (PDD) gets worse. It is was all progressive dementia do. Are you living in a fantasy land to think you can get him strong enough/well enough/clear-minded enough for him to go home? Yes. That is a fantasy. Sorry.

I can feel your distress and I am very sorry there isn't a better prognosis to share.

In my opinion, you and the rest of the family would be doing more good if you focused all that love and compassion on helping him adjust to a care center -- if not this one, some other one. Support SM as she struggles with doing what is best for him.

BarbBrooklyn May 2016
4 days is not very long for an elder to become açlimated to a new living accommodation, especially if the elder has dementia.

It sounds like dad was wandering, or attempting to elope? Was this also the case at home, and is this why his wife decided to place him?

While understanding that dad is unhappy, I believe i would hesitate to attempt to care for him in a home environmen. You would need three shifts of alert and rested caregivers to keep hum safe. Is he going to activities and interacing with other residents? I'd talk to the administrative and clinical staff about how best to manage the adjustment period. It can take several weeks for an elder to settle in.

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