Expert: Mary Gordon - 2/28/2009

Question
My 80 year-old mother-in-law has vascular dementia and lost her caregiver her husband (married 63 years) last month. she is high-functioning physically and even mentally except for some paranoia and occasional delusions. Her frequent hiding valuables and incomplete actions (eg failing to turn off the faucet) make her a full-time charge for a caregiver. We had her assessed for assisted living and she was accepted. Within days she had tried to leave the facility and became abusive when encouraged to return. The facility recommended that she be moved to a lock-down memory treatment facility and we complied. She probably gains from the treatment, but as the highest functioning resident gets very little social stimulation from the other residents. She has now been in the memory unit about two weeks. They staff are just getting her established on drug therapy. Previously she was not taking anything for her condition, except Zanax as needed. We would like to consider moving her back into her own home with 24/7 care from live-in caregivers. We realize this would be tht third move within two weeks and the "view may not justify the climb". You reflections are most welcome.

Answer
Hi Ted,

I very strongly suspect your mother in law is more impaired and on more fronts than you are aware of from external signs. If her personality and ability to carry on a social conversation is relatively intact, they can really fool you into thinking they are more capable and with it than they actually are. After all, its not common to really grill your loved ones to find out what they really do or don't know or can do.

We had my mother in law put through a comprehensive evaluation early in her journey with dementia (sort of like the evaluation you would put a child through for learning disabilities). It was completely shocking. At the time, all we were really aware of was a little fluffy headedness. She was forgetful - but we didn't realize how impaired her ability to reason, her logic, and emotional control was. She was also perceptually impaired (depth perception, reaction time, pattern recognition, etc. etc.). She had no feel for the passage of time, couldn't read a watch or a calendar.

There is a phenomenon called agnosia, which goes with the brain damage, that causes the person to lose their ability to recognize what they are looking at. Even familiar faces and places, common objects etc. start to look strange. There is nothing wrong with their eyes - they just can't look at what is around them and know what they are seeing, where they are, who they are with. This is why they start getting disoriented and lost even in familiar surroundings. They can even start to believe that someone has taken away the real things, places or people and replaced them with artful fakes.

You are also describing her as having delusions - which are mistaken interpretations of real events. Her poor brain is struggling to figure out what is going on. If you have always been able to rely on your memory and perceptions, you are going assume everything still works. If for example, items disappear, you won't assume your memory is gone, but that someone has taken them. My mother in law used to believe that people on TV could see and hear her, and even talk to her - which I suppose is not unreasonable given that TV announcers do look right at the camera and address themselves right to the audience.

Your mother in law is having "catastrophic reactions" - her agitation and flip outs, which I presume is what the Zanax was for. They are kind of like toddler tantrums. She gets to the end of her coping rope and acts out - and it is usually worse when the person is tired, hungry, frustrated, thwarted, overloaded or otherwise stressed. These will likely get worse as things progress, and she will need very knowledgeable caregivers who know how to deal with her, and can adapt their approach and timing to prevent them.

Here is a really good article on the experience of dementia. Although they talk about Alzheimer's in specific, the concepts absolutely apply to vascular dementia (also known as multi-infarct dementia). It will give you a lot of insight into what is going on with her, and why she may behave the way she does.

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

It is possible to provide a sheltered environment in a home environment, but it will require a lot of changes to a typical home to make it safe for her and convenient and safe for the caregiver to adequately look after her.

She really will need a secure environment, where not only can she not get out unescorted, but where she doesn't have access to dangerous items. Think of her just like a small child. If she was at home, she would need to be kept from tools, appliances, hot water taps, cleansers, medications, etc. etc. She will be having more and more coordination and balance issues, so she needs grab bars and railings and no clutter. The environment needs to be cleared of small furniture, rugs etc. She may have problems with stairs so you need to be able to prevent her access to them. She may need changes to the bathroom to make it easier for a caregiver to bathe her.

Here a couple of sets of tips
http://www.alzheimersbooks.com/096.HomeModification.html
http://www.cmhc-schl.gc.ca/odpub.pdf/60849e.pdf

I guess the real question for you is....what do you hope to gain by keeping her home ? What do you hope the advantage to her will be?

Certainly, the close supervision of her medications in the locked memory ward is a plus, to really keep an eye on her. It is also handy to have medical staff around to deal with any problems as they arise (vs. getting the 3 am call from the in-home staff to come take her to emerg). She may also benefit from specialized activities and purpose-built facilities (i.e. specially designed and equipped), and from a very predictable routine.  There will be opportunities for socializing and participating in activities in a facility that can be hard to replicate in a home environment. She will need a specialized diet as things progress, and she has trouble feeding herself, and chewing and swallowing. It is not that these things can't be done at home, but it requires a lot of effort and thought, and her condition will not stay still (her needs will be constantly changing and evolving).

Shortly she will not really know where she is, even in her own home. By mid dementia, my mother in law would repeatedly ask to go home. Sadly, she did not mean the apartment of her later years, or the house she lived in for most of her marriage, or even our home. She was talking about her girlhood home, where she thought her three sisters and her parents were waiting for her.

My personal bias would be to leave her where she is, and see how she does - give it at least a couple of months. She has had some upsetting turmoil of late, particularly with the loss of her husband. It takes a while for the person to settle down and adapt to a new situation. She may really surprise you in how well she does there - and certainly, the truth is her home situation would have to be very different than it was with her husband alive and acting as her caregiver. The location might be the same, but everything about the way the home front ran will be markedly changed. It can be very socially isolating to stay home alone, even with hired caregivers 24/7.

The way to look at her condition is to take a very pessimistic view. Right now is as good as it's going to be, and from here on, it gets worse - much worse. Plan not for her care today, but for what is coming, so you are completely prepared for worst case.

I may be out on a limb here, but I don't doubt that your wife is in real distress over her mother, and reeling from her father's death, and feeling terribly guilty as well as upset. It is really shocking to visit a dementia ward. It is like looking into hell itself, particularly if she hasn't really come to grips with where the dementia is taking her poor mother. It is very tempting to think her mother doesn't belong there, particularly if her father shielded her from the full reality of her mother's condition (which is fairly typical).  I remember thinking similar things when my mother in law first had to move from assisted living to the locked ward - I was horrified. Seeing others further along in their dementia is depressing and alarming, but you have to keep in mind what a swirling jumble your mother in law's world has become. When you have no short term memory, it is like being very drunk at a very large party full of strangers. Everything is disconnected, things come and go and make no sense at all, and you just can't get a hold of anything. Nothing will stay still long enough to grasp what is happening around you.  

Rather than try to cope right now with the stress of trying to adapt her home and get a good caretaking team up and running (not necessarily that easy to accomplish), why not take some time to recover from the grief and upset of the recent weeks. For the moment do nothing, You know your mother law is safe and well looked after. Let the emotions clear a bit so you can be clear headed and realistic.  Give everyone some time to settle, and then evaluate your options.

I don't know if this helps at all. I'm thinking of you. This is a very tough time for all of you.

Mary G.