Alzheimer`s Disease/Dementia / "escapism"
My father-in-law is 84 and was diagnosed with dementia two years ago. He has other medical issues including having a stint emplaced and diabetes, and is taking medications for them.
Around six months ago, his overall condition deteriorated and he had several visits to emergency rooms (for dehydration, etc.). His wife was unable to care for him properly and home care didn’t work out. In July, we placed him in the memory care unit of a local assisted living facility.
Generally, he’s doing well there. The care is good, he receives medications 3x a day, eats regularly and has even stopped taking insulin (better diet). We visit twice at night during the week (just after dinner) and bring him over to our home on Sundays; one son also brings him to his house on Wednesdays (or out to a local restaurant). We also scheduled twice weekly PT, just for some exercise during the weekdays.
But one issue that keeps coming up is his need to escape. Go somewhere else. He started with this in the weeks leading up to his departure from home, taking each sibling aside (when his wife couldn’t hear) and saying, “You have to get me out of here. Anywhere, but here. I don’t belong here.” After being placed in the home, this lessened a bit until recently. Now, his anxiety has increased and he remains convinced that he has to leave. Although his wife is still alive, he insists on getting married and needing to move.
The consistency of his pleas is surprising. Last night, he begged to be taken out of the home and only calmed down when the head nurse (who is wonderful) discussed it with him, agreeing to talk about it today. We checked in and she said he’s asked several times when they’ll meet to discuss his departure. We’ve found that he often packs a bag with photos in preparation for leaving.
Can you explain why this is happening? I know it’s a complex disease – ex-wife’s mother endured Alzheimer’s for several years so I’m not new to the condition – but need some help/counseling in how to help him, help my wife. Can you offer some strategies for coping with it? Diversions only go so far, and not sure how effective Xanax is when he’s so upset.
Thank you for your time,
Hello Len: I'm very sorry to hear of your father's continued anxiety--I'm sure it's very upsetting for the entire family. If your father has a true dementia, then it's very common for him to be wanting to go "home" or elsewhere. The truth of the matter is that any place he would go, he would feel the need to be somewhere else because of the damage in his brain. If he is unable to remember your conversations with him from one time to the next, then I would advise you tell him a "therapeutic fib" by saying something like "I know you really want to leave here Dad, but we have to wait for the doctor to discharge you and we're hoping that will be tomorrow--I think he's waiting for just one more test result before you can go home." This way, you're giving him hope that he'll get what he wants, and he will forget the conversation took place so you would just keep delaying in that manner. The nurse was correct to take him seriously and discuss his "departure" and he likely forgot that he had that conversation with her but he was calmed by it. As his dementia progresses, he will become more settled there and will want to leave less and less. Another thing to think about is to decrease your visits with him temporarily until he becomes a bit more settled. He may not be expressing the exit seeking until he sees a family member--you would need to ask the staff about that, but if his agitation and anxiety escalates when family is present, then it would be best if you decrease the visits for awhile. Packing to leave it also very common and should be tolerated and if the staff wish to unpack his bag, they should only do it when he is not present. If you give him hope every time that he will get what he wants "tomorrow" then it will help him calm down and eventually, he will ask less and less. Don't make the mistake of trying to orient him to what is reality now, because he can never understand or accept that. Any medications given to decrease his anxiety should only be used short-term because it will increase his chances of falling, but if his physician feels he needs something, then try one at a low dose for a few weeks to months and then start to wean him off it.
It would be very helpful for you and your family to learn more coping mechanisms with him and I recommend my first book "Love, Laughter, & Mayhem - Caregiver Survival Manual For Living With A Person with Dementia." It's a very easy read and has many, many tips for how to interact more effectively with an elder with dementia, as well as tips for how to better care for yourselves as caregivers--and you are all still caregivers even though he's now in a facility.
I wish you much luck Len as you and your family move forward with your father on his journey through dementia.