Expert: Mary Gordon - 7/27/2011

Question
Hi Mary this is my 3rd time writing to you, you have been so helpful to me I thank you so much,,

The first time I contacted you was regarding my spouse's PD (& LBD since January 2011) It has been so good for me to try and understand this horriable disease...

You sent me back a real nice note and also added the Seven Stages of the disease, as I checked you note and stages today I would say he is at the 6th stage is that not really fast?

He is now becoming very possessive to the point that he does not want to do anything away from me, we are 24/7 together and now its to the point of jealousy if a man even looks at me..
Is this normal, we are 71 & 70?
I have a social worker coming over tomorrow to see if I can send him to some place where there will be activities with other people with the different diseases, the problem is he does not want to participate in anything..

This is really starting to take it's toil on me...

Thank you Mary

Joy

Answer
Hi Joy, sorry it took me so long to get back to you.

It's hard to say what is "normal" in terms of dementia progress. Quite often by the time a person is diagnosed, they are much more impaired on many fronts than their family realize. After all, during most social interactions, you are not quizzing the person about everything they do, so they can often conceal their problems for a long time. My mother in law was like that with her Alzheimer's.  When she went for her assessment, all we were aware of was some slight forgetfulness. If you had met her at a dinner party, you would have thought she was totally fine, charming, well groomed, able to carry on a completely normal sounding conversation. They sent her for an assessment similar to what they put kids through looking for learning disabilities. My husband went with her, and he was completely shocked at the results. She couldn't do math, understand calendars, follow instructions, solve problems like simple puzzles, tell the time. Her memory was very impaired, her judgement was impaired, her depth perception and reaction time was impaired, as was her fine coordination. She couldn't copy simple drawings. Her ability to understand language and understand what she read was impaired - and I could go on and on. And as I said, if you had met her at that point you would never in a million years have suspected her problems. You would have thought WE were the crazy ones to even suggest there was something really the matter with her.

I wonder if your husband was a bit like that. Especially if a person has been fairly intelligent and socially competent, they can retain enough abilities long into their illness to be able to hide their deficits. They have to be pretty far gone before the issues start to become obvious - and then after that point, every loss seems like a major one. Lewy Body doesn't progress quite as predictably the way Alzheimer's does. It is more like a roller coaster than a giant slide, if that makes sense. Good days and bad days. Decline and a little recovery and decline again. And the duration of the progression varies considerably from one person to another. Some people progress to the end in less than 2 years and some go more than 20 years, with a fairly decent quality of life for much of it. Various drugs can help some people a lot. Other people don't respond to the same drugs favorably at all. Coming up with a drug program involves trial and error, but the outcome can be worth the tedious wait.

Part of why he is clinging to you is that he knows he needs you. He is terrified of letting you out of his sight, because he has lost his sense of time and place. If you go out of the room, even for a few minutes, he has no "feel" for how long you have been gone - it could have been 5 minutes or two days. He can't necessarily remember where you went or why. All he knows is he is alone and it's very scary for him because nothing makes sense to him, and he can't figure out what to do. It's like a toddler who has no idea where mummy has gone - it's flat out panic. A lot of people with dementia will follow loved ones around like a lost puppy, totally driving them crazy.

And I know you have realized by now that no amount of reasoning or arguing is going to change his way of thinking. He really can't help himself. He can't realize that his jealousy or possessiveness is unreasonable, or even recognize he's doing it. He can't see how his behavior affects you at all. Try not to argue with him. Try to reassure him and distract him onto some new activity or subject.

By now, your social worker has come around to see you. I think sending him to a day program is a very good idea. It will get him out of the house and keep him busy and occupied - and it also provides chances for socializing and doing activities that would be hard to arrange in a home environment. Most importantly, it gives you a break, since your health and sanity are even more important than his. If you get worn out and run down, you will get sick, and then you won't be able to look after him at all. You need some time off to get some rest, go shopping, get your hair done, go visit a friend, pursue a hobby - whatever. Besides "adult daycare",  if you are a member of a faith community or have friends and neighbors who might volunteer, I'd ask for help "sitting" with him, so you can go out.  Even a friend who can come over and watch TV with him while you go out for a bit might be a big help. There are also facilities that offer respite care - i.e. you can place him for a few days, and have a little holiday on your own, or visiting family or friends. Look after yourself. His illness will demand more and more exhausting and relentless care as it progresses, so you need to put yourself first. Never mind just looking after him physically - if you become even slightly unwell or tired out, your ability to cope will decline, and it will be harder to arrange things on his behalf.  If you get sick from stress and overwork and worry, you and I know he'll be in a crisis and have to go into a home right away.

Don't you worry about what he says he wants - he can't see the bigger picture of what is best for him and you. He will adapt. Right now, he really is like a kid. If you ask him if he wants to go to daycare or try some new arrangement like a sitter or a housekeeper, he might give you a big argument. However YOU need him to go to daycare, so in a real way, what is best for you becomes what is best for both of you, and you make decisions based on that.  Don't even ask him or discuss it with him,  just make the arrangements, and cajole, pat, sooth, distract and divert if the subject comes up. I know it's hard to do, but trust me, most of the time, people do just fine in daycare, and actually can start to really enjoy it.

I'm thinking of you.

Here is a Lewy Body page
http://www.lbda.org/

Mary