Expert: Mary Gordon - 3/11/2010

Question
QUESTION: My aunt is 78 and was diagnosed with dementia six or seven years ago. Two years ago she was getting lost, calling 911 and not properly caring for herself. The family decided she needed to be in assisted living. After evaluation she was placed in a memory unit because they felt she might leave the facility and get lost.The whole time she was there she was crying and miserable. She began to get violent and ,so they sent her to a hospital for further evaluation. While she was in the psych ward she developed blood clots in both legs. Then it seemed like almost over night she went downhill. She was not able to carry on a conversation, hallucinating  and would not eat. It seems that she is losing about 5 to 6 lbs. a month. She now weighs 116. She is on hospice and in a nursing home. My Dad and I live out of town and went to visit her this week. She did not know me but she seemed to know my dad.She would talk in sentences
but make no sense most of the time. My brother saw her a month ago and said she would just babble.She now is crying all the time again and wanting to go home. She seems to make sense when she tells my dad she is miserable and wants to go home. Is it normal for people in late stages of AD to have some times where they are lucid? It breaks our heart that she is so unhappy.The family is considering bringing her home but wonder if this would solve the problem or if she would even know where she was. In order to bring her home there would have to be 24 hour care. She is incontinent and can not walk. What are your thoughts about this situation? It is so upsetting!!

Lara

ANSWER: Hi Lara, I know this is gut wrenching to watch.

A lot of people with dementia will beg to go home. The problem is, the home they want is not any home that exists for them in the present.

My mother in law would frequently ask to go home - and it wasn't until we questioned her closely on a lucid day that we discovered the truth. What she wanted wasn't to go to our house, the apartment of her later years, or the marital home she spent 47 years in. She wanted to go home to her childhood home as it was when she was young. She thought her long dead parents and all of her sisters were waiting there for her. The house had been sold 60 years before - it was all gone, as were most of the family she longed for.

Her memory loss wasn't just for recent events. Her mind had really erased most of her adult life - and this is not uncommon. In her mind, she was a young woman, and she just couldn't figure out where everyone familiar had gone.  

I think what she really wanted was to return to a place and time in her life where things made sense, where she felt loved and secure and she understood her place in the world. We could have taken her anywhere and it would have been the same - she was lost, scared, confused. She wanted her mother and father. She wanted to be in her own bed in her girlhood home, with her sisters (two of whom had passed on), and no one on earth had the power to grant her fervant wish.

When you are faced with this kind of agitation and distress, the wisest thing to do is deal with the emotions underlying her upset. She needs reassurance. She needs an arm put around her and to be told she is loved and safe and everything is okay. She needs to be patted, soothed, and commiserated with. There is nothing wrong with telling her comforting white lies - that she will be home soon, that you'll go when the weather is better - anything but confront, argue or take away hope. Then try to distract and divert her on to some new subject. We found colorful picture books and old family photo albums would give a good focus and were something that we could use to engage my mother in law's attention and get her off whatever jag she was on. Music, stuffed animals, looking at birds - anything that might catch her fancy and move her thoughts onto a new track.

Here is a good article on what your poor aunt has been going through
http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement

Someone in the family with power of attorney for medical decisions might want to talk to the facility and see about her medication - if it hasn't been tried, she might be less down and upset with an antidepressant. Hospice means she should be kept as comfortable and serene as possible, and if she is emotionally distressed like this, they need to consider what can be done to help her.

Hope this helps. The final stages can be brutal for the family - dementia like any other illnesses. Hang in there.

Mary G.

---------- FOLLOW-UP ----------

QUESTION: The home she grew up in is the one where she has always lived. She has never married and does not have children. She stayed in the house after her parents died.The family has not sold the house so that is where she would go. Do you think she would know where she was and be more settled? My Dad talked to the nurse about an antidepressant and she is on one but they are considering increasing the dose. She is also on clonopin which they are going to increase and see if it helps. Thank you for taking the time to listen and offer suggestions. Also, thank you for the article.

Lara

Answer
Hi Lara, she might not even recognize where she was if she was home. She is losing the ability to recognize what she is looking at - that means that people, places and things start to lose their meaning. This is why they start getting lost in their own homes and in their own neighborhoods. Nothing looks like itself, nothing looks familiar. This is called agnosia. It's part of the progressive brain damage. You could take her to her own home and she is unlikely to know where she is - her parents won't be there, and nothing will look quite right to her. It's actually very common that people ARE home and they drive their caregivers to distraction asking to go home.

In later AD, my mother in law moved from a large attractive corner room in assisted living, to a small room with one window in a locked AD ward. If you can believe it, she didn't even realize she was in a different facility.  At that stage, she was still quite verbal and the only thing she noticed was that more cars were going by the dining room (which was because the new place was in the middle of the city and the old place had been a bit out of the way). She did not seem to grasp her room was different, or the people were different. I think everything had become a big blur. Don't forget, by later dementia they have almost no short term memory. They really can't recognize what they are seeing, logic out where they are and retain the thought. Even if it flickered through their head for a moment, it would be gone in a heartbeat.

I know you want to do the right thing by her, but she needs to be where she is safe and most easily cared for - things are going to get worse and worse over the coming months, and you want her where they are equipped to deal with whatever happens and there are a host of staff on shift available to deal with anything night or day.  The end stage can be really a marathon, and it's brutal - and you have to be realistic about what everyone can handle in a situation that will get worse and worse and may go on for months and months.    

Right now, when you hear her say she wants to go home,  as caregivers, all you can hear are the “guilt tapes.”  You think, I knew we shouldn’t have placed her here!  She is unhappy – we must have made a mistake.  What am we going to do now? Regardless of your fears, what needs to happen now is that you find a way to face this together - which can be as simple as saying, "I know hon, I'm sorry you feel so sad. I wish you could go home too!"  I want to go home  is just a phrase. It's feelings that have to be addressed, not the statement.

YYou are on the right path to continue working with the staff to adjust medications to help with her mood. It can take some time to find out which dosage and type of medication work best for any individual. It is also common for one dosage to work for a short period and as the disease changes so to does the need for a higher dosage or new type of treatment. Talk with the staff at the facility to see how she may be when you are not around. Try to uncover how often she is crying. Then connect with the doctor’s about change her medications because she is obviously suffering from anxiety and depression, and they need to help her - she should not be in distress. If you don't see any improvement, within a few weeks, raise the subject again. They can then start her on something stronger or different. Antipsychotic meds like respiridol can also be worth a try. Quite often they really help with delusions and agitation.

She is so lucky to have you and your dad concerned about her.

Thinking of you.

Mary G.