Expert: Mary Gordon - 9/26/2008

Question
My 81 year old mother has Alzheimer's and was recently move to a long term care facility.  She is very unhappy and wants to come home.  It breaks my heart to see her so sad.  She enter the the home on July 30/08 and everyday it is the same thing she gets very upset and wants to go home.  We try to tell her that she has a new home because she is having difficulty remembering and she is not safe on her own.  Will she ever stop asking to come home and are we telling her the right thing about where she is living.  I am also concerned because I just learnt today they have stopped giving her Ebixa and have not replaced it with anything else.  The nurse suggest we have the doctor prescribe an anti-depressant. We have notice changes in my Mothers moods and her interaction with her family.  She never seems to smile or laugh anymore and she has lost her appetite lately.  Is it due to the change in her medication.  I  want to find out why they stopped the Ebixa.  My siblings and I are visiting my Mom 7 days a week not for the whole day but at least a few hours each day.  Should we be visiting that much we get mixed opinions from the staff.  They tell us that we should let her settle in and while we are not there she is just fine. We get her ready for bed every night and wash her hair and clean her up if she had an accident and have no problem doing this. I know we need to be her voice and have no problem doing so but are not sure if we truly understand the disease.  My mother was seeing a specialist but since moving to the home she is seeing the doctor on staff.  Is it uncommon not to have any contact with the doctor why do we have to ask the questions.  Should the doctor leave a report for us.  We were so involved in my mothers' medical and don't know how to handle this.  We did have a family meeting with the staff and asked questions one of which was she still taking the Ebixa and were told yes, today I was told no and she hasn't had it since she went into long term care.  Who do you believe? My mother does still recognizes her children she has eight and does for the most part remember her grandchildren but doesn't always know her great grandchildren.  She repeats herself all the time and mistakes one male resident as a member of her church even call him by the members name.  She gets confused where she lived as a child to where we lived as a family.  She is in long term care because she wandered away from home to an old resident to make dinner for my father who has been died for 21 years.  She has no recollection and wants to know why we are punishing her.  It is extremely difficult for us and her I just want to bring her home because I can't stand to see her so sad and unhappy.  Please help me understand if we are doing the right thing.  I would appreciate any information we can get.  My sister and I did attend an Alzheimer's support group for only two months then my mother needed 24 hour care and we stopped going. We have requested information from the long term facility on support for families dealing with this dreaded disease but they are not very helpful.  We have joined the family group meeting once a month to deal with issues or concerns and up and coming events.  We are desperate to get information and try to have a better understanding of what we and my Mother are dealing with.  Thanks for listening and I look forward to hearing your response.

Answer
Hi Loretta, I know you are really feeling tortured over your mother's condition.

One of the best explanations I have ever heard of the desire to go home is that they don't really mean a physical place. They want to go back to a time in their life when they felt secure, and when things made sense, when they knew who they were and what their place in the world was.

I think this is an apt explanation. When my mother in law ended up in the specialized dementia ward, she also asked to go home. When we questioned her closely, we discovered she wanted to go back to her girlhood home, where she thought her parents and sisters were waiting - and as you can guess, the parents and two of her sisters were very long since passed away, and the house sold out of the family a half century before.  If we had taken her back to her marital home, or to our home, it would have looked every bit as strange as the dementia unit - she'd even stopped recognizing pictures of her late husband. When we told her it was her husband Jack, she got upset because she'd forgotten she was married, and she told us if she was married to that strange man, she had to get a divorce. It was really tragic in so many ways Her life was one big scary swirl that she couldn't make sense of, no matter where she was.

The brain damage from Alzheimers causes agnosia - they stop being able to recognize the things they see, which includes objects, places and people. Nothing looks familiar. They just aren't sure what or who they are looking at at all.  My mother in law decided at one point I must be her sister Norah. I think she knew at some level I was familiar and so who else could I be? She'd forgotten she was elderly, and so of course couldn't reason that her sister must be as well.

People with AD tend to be a bit more with it when they are rested, calm, and fed, so there are no stressors. All of them have fluctuations and will be better some days than others, and often better earlier in the day than later when they may be tired or stressed out from coping with their day. Its like they are just holding onto things with their fingernails. It has to be just awful. I've often thought it must be like being very drunk at a really big loud party, where everything is a big, totally confusing blur and people are coming and going and you just really want to go somewhere and lie down until you can get your bearings.

This is a really long article (26 pages), but I think it is just excellent, and worth not only reading, but worth printing out and keeping. It will give you real insight into the experience of dementia and I'm sure you'll find it helpful to understand what your mother is going through.

http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...

If you want a good book, I'd recommend The 36 Hour Day by Mace and Rabin, published in paperback by Rabin.  

My advice is not to respond to the request as an actual request to go somewhere. What she needs is for you to respond to the emotions behind the words. She is telling you she is scared and sad. You can't answer that with reasoning - this is about feelings, not facts. She needs reassurance, she needs soothing and hugs and pats and to be told everything and everyone is okay. You can tell her white lies if you need to. My mother in law often wanted to know where her mother was, and telling her her mom was dead for 40 years was like her hearing it for the first time. Very distressing and it accomplished nothing. We'd tell her she'd see her soon, that everyone was safe and alright. We'd acknowledge her distress (say, we know you are feeling sad, come on, lets go for a little walk and you can hold my hand).  After as much soothing and comforting as we could do, we'd try to distract and divert her to get her onto a new subject. She liked photo albums and picture books, even if she had no clue what she was looking at, or we'd go off to look at the birds at the birdfeeder, or to have a nice cup of tea and cookie - anything to get her train of thought off her distress. We also gave her a really nice soft teddy bear, which sounds silly for a grown woman, but she liked it. As I said, we tried to deal with her intact emotions by responding to them kindly, rather than try to argue with her about why she shouldn't feel them, or how the solution she wanted wasn't possible.

Now, on the medical front, I would absolutely call a care conference and ask the attending doctor to attend. Does anyone in the family have power of attorney for her personal care decisions? Just because she is a facility does not mean they are driving the boat with respect to your mother's care. I'd want to find out exactly what medications she is on and why, and tell them point blank that they are not to stop or start anything without explicit permission from the family member who has the POA. You will likely want to start having regular sit downs with the staff, maybe once every 4-6 months, to assess what is going on. Personally, I would not have stopped her Exiba (also known as memantine). If they did that without permission, they'd better have a darned good reason. It does help many people by slowing down the disease a bit, thus improving her quality of life. You should know about all medications. You will also want to discuss with them other aspects of care. I know it is a frightening subject, but they need to know your stance on options should she develop a health crisis. Under what circumstances would you want things treated. Would you want her recuscitated if she had a crisis? Would you want feeding tubes or IVs.
At what point would you consider hospice like palliative care to keep her comfortable and out of pain, but let nature take its course. I know its horrible to contemplate, but you need the rapport with the care staff and her attending physician to be able to discuss all these things openly. You need to know what is going on, and they need to know what the family wants.

Clearly your mom is stressed, depressed and agitated. It may be worth trying an antidepressant to see if that helps her be more comfortable. This needs to be discussed with the doctor to go over the pros and cons of various choices. The usual drill in an elderly person is to start with a low dose, and see what happens - and then very gradually increase until the desired effect is achieved. The lowest possible dose is the goal. You also don't want her to be sleepy or floppy which will make her prone to falls, and also prevent her from participating in the little activities that may brighten her day a bit.  The staff must not be using drugs to replace loving treatment.

Have you tried contacting your local Alzheimer's Association for information on support groups that there may be close to where you live? I completely understand your need to talk to others who are going through similar challenges. It really is a terrible disease.

Hope this helps. Thinking of you.

Mary G.