Expert: Mary Gordon - 6/22/2010

Question
Dear Mary,

Both my parents suffer from Alzheimer's disease and are almost 90 years old.  They are in their own home with round-the-clock caregivers.  At this point, Dad is no longer manageable and must move to a care facility.  He is argumentative, combative, and now interferes with mom's care.  He no longer will care for himself (personal hygiene, eating), and his health is severely declining weekly (seizures, weight loss, confusion).  His doctor ordered him to relocate to a care facility more than a year ago; but because of his absolute refusal to cooperate and his desire to remain at home; we (his children) have tried to make the home setting work.  We have no choice at this point but to move him.  We have a small apartment in an Alzheimer's Care Facility for both mom and dad; but how do I get dad to go.  He will not even consider it, he is no longer capable of reasoning.  Exactly how do I get him from home to the facility?  Can he be sedated? Can he go to an emergency room and discharged to the care facility?  My relationship with dad is all but ruined because I (his daughter) am always left to being the bad guy; I had to take the car keys because the Dept. of motor Vehicles would not, I need to transition him because the doctor, etc. don't like confrontations.  So how do I accomplish this?  Thanks for any info.

Answer
Having been through this with my mother in law, my best recommendation is to use his confusion and memory problems to your advantage, and sort of whisk him away in a way that he won't feel confronted or overwhelmed with activity and changes.  

I know you deeply wish you could have his approval and concurrence with the plan, but the truth is, his "reasoner" is broken. You can use the most impeccable logic and persuasive arguments, and he will never see what you see. He can't see his own impairments and challenges. He's just not capable of seeing himself as he is now, let alone accepting he needs help. He is never going to believe he needs to move. You are never going to get his agreement, let alone his permission. You can't win an argument with a person with dementia.

People in mid dementia are already living in a total swirl. They find bustle around them very confusing. They can't make choices or decisions for themselves. It's therefore not helpful at all to involve them in packing activities or move decisions like what to bring to their new place. They can't help make good decisions about what clothing or personal items to take with them - so trying to involve them is counter productive. You need to make the decisions for them - you have to do what you have to do to keep them safe and healthy. I think you are likely to find it is a HUGE relief once you know they are being well supervised and cared for.

I tried to get my mother in law involved in decisions about her clothing and shoes, but gave up in frustration. If it was dirty, ragged, no longer fit, was not washable, comfortable, attractive or in style, that's what she wanted to bring along! And silver party sandals she hadn't had on in 30 years, or the sling backs that made her unsteady, were the shoes that she wanted to put in the bag.  

We also found that it was better not to talk about the impending move at all. She would get upset every time the subject came up, and five minutes later she would forget what she had been told, but would stay wound up.

What we finally did was to make the arrangements, and start to prepare her new room the week before the move. We had it painted and put up a pretty border print. We had measured and reviewed her furniture, ornaments and clothing and figured out what she would need and what she might like and be able to use. We didn't tell her we were doing that. We just did what needed doing so it all would be seamless and invisible to her.

The day before the move, we took her to her sister's for a visit (any family member would have done). We dropped her off in early afternoon for a nice visit, a home cooked dinner and an overnight stay. The second she was of sight, we had the truck at the door and were making runs between her apartment and the new room at the assisted living facility. We moved everything and set it all up - favorite chair in the corner, books on the shelf, clothing in the dresser, pictures hung on the wall, hair brush in the bathroom. We wanted there to be no fuss around her at all - no packing or unpacking. No boxes or suitcases.

If there is any family member or old friend your parents could visit for a night (or a weekend if you need more time), it is a tremendous help. They will be happily engaged and distracted, and you can work uninterrupted. After all, you don't have to deal with the contents of their current home now. You just take what they will need going forward, and come back in later weeks or months to make those decisions.  

We picked up my mother in law just before noon the next day, and took her to the assisted living place. We ate lunch with her at the facility dining room, and then took her to her new room. Everything looked beautiful and so many familiar things were there. We stayed for a few hours, and then staff took over. You need to trust that they get new residents all the time, and are experienced in helping through the transition.

If a loved one protests, you can use their memory loss and confusion to soothe the way - you can be very matter of fact and  "remind" them their apartment is being painted, the roof repaired, fumigated, that this is just a short stay, a little vacation - whatever white lie will help. Distract, divert, pat, sooth, and reassure. They are likely to forget what you tell them shortly anyway. There is no kindness in insisting they be told the truth, when it's really not something they can understand or accept.

The transition was hard on us, but surprisingly easy on her - much less traumatic as we had anticipated. This was probably because she was more disoriented than we really realized. I'm not convinced she really knew where she was. When she talked about going home, if you questioned her closely, she was not talking about the apartment of her later years, or the house she lived in with her husband for 50 years, or even our house. She was talking about the house her parents lived in, where she thought they and her sisters were waiting for her, even though it was sold out of the family 60 years ago.

At one point, when she needed a locked unit, she moved from assisted living to a specialized dementia ward. She didn't even know she'd moved. She never really commented at all - which goes to my belief that every place was equally confusing to her. The two facilities were quite different in layout and appearance, but she didn't seem to recognize that she was somewhere new. Agnosia means that nothing really looks "right" to the person, and nothing seems truly familiar. She could have been in her old apartment living room and still been asking to go "home".

If your dad starts in about going home at any point, keep in mind that what he really wants is to return to a place and time where he felt safe and secure and understood his place in the world - when things made sense. He is not really talking about a physical place that currently exists. You have to deal with the emotion underlying the words, rather than the words themselves. Put your arms around him, comfort, reassure, and get him distracted and onto some new subject. Photo albums or picture books often work wonders.

The thing is, once there, even if your dad wanted to leave the Alzheimer's facility, he is very unlikely to be able organize "an escape" on his own. At one point, my mother in law wanted to get an apartment with another sister, who also had dementia - the two of them could no more have lived on their own than flown to the moon by flapping their ears. We just humored the two of them, knowing full well it wasn't worth arguing about, because neither of them could have successfully called themselves a cab, let alone organized a move for themselves. We used the subject to segue onto other topics, like memories of the decor in the family home.  

If you think he may be agitated, talk to the doctor and the facility before hand about a mild sedative to be used only if needed. Everyone is different. He may well be fine, if you are careful to keep all the activity and stress far away from him. He needs cajoling, humoring, calm reassurance. He doesn't need to "get" any part of what is happening to him or see any of the activity.

Some places suggest you limit the visits in the first weeks. I don't think this is necessary - unless you are very emotional. If you can't visit and be cheerful and upbeat and matter of fact, then it might be better to make your visits short or less frequent until he is well established in the new routine. He will pick up on your emotions even if he doesn't understand what is happening, and your distress will be "catching".  

I know this is so hard, but it is what it is - this is not your fault, and you are doing your very best to take good care of him and look out for his best interests. He will be fine - I think this will be much harder on you than on him at first.

Hope this helps.

Mary Gordon
Toronto