Oftentimes it's difficult to know the best way to interact and communicate with a person who has Alzheimer's. And so I'm going to let people know in advance how I would like to be treated should I develop this disease.
First of all I want to be placed in a care facility, and it should be the best one available that I can afford. I don't want anyone making the supreme sacrifice to care for me at home. Besides, it's quite possible that I will receive better care if I'm some place where there are numerous people involved in my care, rather than having one person who will try to do it all.
I want people to realize that regardless of my behavior I am probably still "in there" to some extent. By this I mean that I may enjoy being visited even if I don't recognize the person visiting me. It could also be that I enjoy being visited but just can't express that verbally.
I want to be treated with respect, which means people should not talk about me negatively in my presence. If I am 'still there' I may understand every word even if I don't talk anymore. I will also want people to knock before entering my room and preserve my dignity by stepping out if I'm receiving personal care.
I want my feelings to be validated. I do not want people to try to immediately 'explain away' my feelings. Rather, I want people to listen to me and acknowledge my fears, concerns, and perhaps sadness, and only then change the subject to something more pleasant.
Don't insult me by talking down or baby talking to me. That won't be necessary. Talk to me the way you always have. If I don't understand that, baby talk will probably not help.
Don't keep asking me questions that begin with "Do you remember?" Of course I can't remember. If I could remember I wouldn't be there in the first place.
I want people to be patient and not correct me or disagree with me no matter how wrong my statements may be. This will just either embarrass me or make me angry. Please just go along with me unless there is some compelling reason not to - and there rarely is.
If I develop Alzhiemer's I won't act 'normal.' I hope you will not try to make me act normal. That will just make me frustrated and/or angry. It will also upset you. Interact with me at my level and we'll both be contented.
If I should keep asking for someone who has passed away - such as my Romanian life partner, Ed - I want to have that desire validated as well. But I would not mind if people then tell me some little "white lie" as to where he might be and that he will come shortly. That would probably relieve my mind and make me feel better.
I want to have meaningful activities in which to participate every day. Preferably ones in which I can interact with other people. Possibilities include sharing things such as listening to classical music - especially opera.
Other activities I might enjoy would be painting or having visits from a dog, just to name a few. It will be very helpful if my loved ones and staff at my facility experiment to find out what I like to do. It may be very different from what I like now.
One way to find out what I like may be to ask me. It could be that I will be able to tell you. And if I do tell you something I'd like to do, try to arrange it if there's any way you can.
If you do stumble upon something I really like, please keep doing it. You may get bored but it could be bringing me great pleasure.
I may keep repeating the same story, asking the same question or exhibiting the same behavior over and over. In such a case I want people to be patient and always react as though it's the first time. Otherwise you'll be exasperated and I won't understand why.
Bring me wrapped presents - no matter how small - on a regular basis. I may forget them quickly but enjoy very much receiving and unwrapping them. Everyone likes getting presents and I will be no exception.
Don't complain to the facility about every little thing. If you don't like the way they're dressing me or styling my hair, for example, let it go unless it's seriously disturbing me. Please just make sure I'm getting proper medical care and any needed assistance with personal hygiene.
Remember that - like most people with Alzheimer's - I live only in the present. Find and do things that will bring me pleasure, even if you know I won't remember them a half hour later. At a minimum it may put me in a good mood the rest of the day, even if I don't know why.
If it appears that I have less than six months to live, please order hospice services for me. It may be upsetting to you, but I will probably relish the extra attention. If you're having a problem facing my impending death, get counseling or find some other way to cope. I will need your support.
Above alI, I would ask that people who love me now keep loving me and expressing that love in all the different ways they can think of. One of them is bound get through and reach me on some level.
This is how I want to be treated if I develop Alzheimer's - with respect, dignity, patience and love.
Marie Marley is the award-winning author of the uplifting book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy, and co-author (with Daniel C. Potts, MD) of Finding Joy in Alzheimer's: New Hope for Caregivers. Her website, ComeBackEarlyToday.com, contains a wealth of information for Alzheimer's caregivers.