Alzheimer`s Disease/Dementia / follow-up
QUESTION: Hi Michalene,
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,
ANSWER: Hi Len,
Thank you for writing. I'm sorry this is a difficult time for your family. It sounds like your father in law is still very cognizant of his whereabouts. This is not uncommon with Dementias of the Non-Alzheimer's type. And, many folks do have somewhat "improved" memory once they are placed in a stable environment (meals, medications, etc.). However, his lack of judgment concerning his own medical needs vs. "wanting to leave" are impaired.
While distractions alone cannot "solve" the issue...it will compliment another factor...time. Sometimes it takes a person a year, or more, to relax in a new environment. And, without his wife, he might be feeling a bit "lost". Additionally, as his Dementia progresses, his anxiety will lessen.
Keeping him active is the Key right now. PT is excellent. Does the home have an activity schedule? Get the staff to really encourage him to attend at least 2 or 3 activities a day. We used to have our Dementia folks circle or highlight the activities they would do for the month and then remind them each day at breakfast that we will see them at 9 o'clock for art class (example). I would NOT suggest too many outings away from the home right now. A structured, consistent environment is going to help his anxieties and allow him to navigate throughout his day. He needs to create (what I call) a new brain "impression". That is, because of his Dementia, it is going to take longer to develop a memory of where he is, what he does, etc. for him. He needs to build a new daily routine...except he has Dementia. See the challenge?
Think of it this way....have you ever dreamt you were in your own bed when you were on vacation? We all do. That is because when our brains are relaxed, we wander back to the familiar. And when we wake up, we sometimes think, "where am I?" for a moment or two. Unfortunately, it take a person with Dementia sometimes a few hours to remember where they are and why.
LOTS of personal items should decorate his room. Calendars, clocks, activity schedules should be easily accessible. Each day should be "X'd" or a line drawn through. Special events...Wednesday night dinners at Joe's house (example) should be on calendar.
And, last but not least...LOTS of patience and love. LISTEN to him. Don't explain. If I have learned one thing it is ..."and what can I do to make your day easier?" and when he says, "take me out of here", you say, "I can't do that because I love you and you need to be here..what else can I do?"....and just keep repeating that. It will sink in.
I wish you the best...it is a tough time. It will pass eventually.
With Best Regards,
Michalene Peticca, MA
---------- FOLLOW-UP ----------
QUESTION: Hi Michalene,
Your reply was extremely helpful! The info was presented perfectly ... as if we were speaking. I also appreciate your compassion; he has always been I am actually excited to be able to share with my wife and her brothers.
Just one follow-up, please, to help me understand one aspect of his condition/memory: He's been married for 56 years and his wife still lives in their home. Since we moved him into the assisted living home, he cannot remember her name ... or much of her. He Often thinks she left or has passed. When we've brought them together, he's familiar with her to a point (she is not patient with him --- much to our displeasure). He also keeps wanting to get married and move to another place. Can you explain how he would forget her so easily, so quickly, while recalling others from both his near-present to long past more easily?
Thanks again and take care!
Your father in law "forgetting" his wife is not unusual behavior for Dementia folks, especially when the Dementia person has been transferred to a new environment. I am also suspecting your father in law has Dementia due to prior poor health and possible mini strokes of the brain?
Here is how his dementia would create his memory losses: As humans, we tend to build a "filing cabinet" of memories as our lives progress. We generally keep those memories that have created great emotion in us (going to school, our first car, our first job, getting married, etc.) Additionally, we can keep memories that create much sorrow for us as well (but, that is not the topic here) Now, if you were to look inside a Dementia person's "filing cabinet" of memories..you would find that there are many files missing. Why? Because anytime one has a mini stroke (multi infarct) or a major stroke (CVA) this will cause brain damage that is irreparable; thus, the files may be completely lost or portions of those files lost. So, your father in law may remember someone or something one day and not the next. Or, he may remember pieces of memories.
Alzheimer's disease is not like this. Alzheimer's individuals lose actual brain tissue and their "filing cabinet" starts to empty out with the most recent memory and travels backwards, so that they actually think they are 10 years old when they are actually 80 years old.
Memory losses can also happen to a "healthy" person if they sustain a concussion in an accident. Ever hear someone say, "I remember everything right up to the accident, then not till I woke up in the hospital room" ? Same thing. Additionally, doctors have been warning about brain cell deterioration caused by alcohol abuse, drug abuse, etc.
Anyway, it is random memory losses with your father in law and there is no way to predict what he will or won't remember. When he talks about getting married and leaving, he is really trying to tell you that he is lonely, wants some companionship and searching for some consistency in his life. He is feeling isolated and inconsistent due to his memory losses. Emotions at this point in his disease are ruling any logic or concrete discernment. Does this make sense? That is why I always say it is so important to focus on what the person is Trying to tell you...Not what their words are saying.
Well, I hope this has helped. Again, the good and the bad for the future is that this stage will pass eventually and he will hopefully, start to Imprint his current living conditions and friends into a "new file".
With Best Regards,
Michalene Peticca, MA