Expert: Mary Gordon - 12/5/2009

Question
My 71-year-old husband has recently been diagnosed with Lewy body disease but his symptoms of dementia and parkinsonism began in 2002/2003.  Hallucinations began early in 2009, stopped for a few months and have been severe and constant since August 2009. REM sleep acting out began more than 20 years ago.  Making the diagnosis of LBD was complicated by the fact that on initial evaluation in 2003, MRI did show two areas of right frontal stroke and middle cerebral artery occlusion.  All of his symptoms were blamed on stroke initially but it is now felt that the stroke findings were incidental and that he has actually had LBD all along.  When trying to get an idea of his life expectancy, from what point do I begin calculating the "5-7 years?"  From onset of obvious symptoms in 2003 or from onset of hallucinations?  I'm trying to prepare myself for selling the house which I won't be able to keep when he is gone, my ability to continue working while caring for him (I am 52), and whether he will need care at home for a short period of time or several years. I know only God knows for sure, but can you help me get any idea at all of where we are?  Thank you so much.

Answer
Hi Susan

You don't describe what stage he's at in the progress of the dementia. Many people are like your husband and have more than one cause of cognitive decline going on at the same time - it's called a mixed dementia. The stroke damage has probably contributed at least somewhat to his current condition (it gets called vascular or multi-infarct dementia), although the Lewy Body is the major underlying process.

My best advice is to plan for worst case.  Assume he is going to live for several years and need a lot of care. If I were you, I would immediately book an appointment with a lawyer who specializes in estate planning. You don't mention where you live, but if you are in the United States, you need help now, planning a course to pay for longer term care. You need to understand the medicaid and medicare rules and look back periods. They are very complex, they vary from state to state, and they can be a financial minefield. The average family that consults a good lawyer to assist early in the game saves $60,000 - so it's absolutely worth it for your own protection. You need good legal and financial planning. You are still relatively young and you have a lot of years ahead of you (I'm a year older than you and I plan to be around for a while!!). You need to preserve assets to look after you, as well as your husband.

Assume he will need 24/7 care and supervision in short order. Simplify your life as much as possible to reduce stress. If the house involves a lot of expense and maintenance that will fall on your shoulders, or if it is not conveniently laid out to care for a person with disabilities (i.e. one story, large bathroom, wide halls etc.) I'd think about getting rid of it now. When he's worse, you will be more stressed out than you are now, and selling, sorting belongings, and moving are going to be even more distressing and daunting than they are right now.  If you have a lot of "stuff", now is also a good time to sort and pare back. Make everything as easy to organize and keep clean as possible. Aim to have life as simple and easy to maintain as you can - this is as much about looking after yourself as looking after him. You want to be able to expend as little energy as possible on the domestic mechanics, so you can conserve your time and energy for what is more important.

I'd also contact your local Alzheimer's Association, and the seniors organizations where you live to find out about local supports and programs you may qualify for.  Do lots of research and tap into whatever resources are out there. Here is a place to start looking http://www.seniormag.com/stateresources/index.htm
http://www.usa.gov/Topics/Seniors.shtml

Even if you are very private, independent person, you are going to need all the help you can get, so find out what might be available. If you have a faith community, neighbors, family friends, relatives - talk to them. You may be able to muster some volunteers

If there are family members who can help you, and moving closer to that help and support is possible, factor that in to your thoughts about living situation.   

He is going to be physically disabled as well as cognitively impaired. If you continue working or even want to go out for a few hours to shop or run errands, he will not be able to be left alone in a home without supervision. He will be like a child in that you will not be able to trust him alone with appliances, cleansers and chemicals, tools etc. He will not know what to do in an emergency. He may leave the house and get lost. He may let strangers into the house. He may leave pots on the stove or turn on taps and not turn them off. He may fall - which as you know, is a common problem for people with Lewy Body. So - assume you will need a sitter or caregiver in the house, or that you will have to send him to an adult daycare while you are out.  

There are a lot of unknowns with respect to how well you will cope with him in home setting as things progress. Expect that care will be come quite relentless - 24/7 365 days a year, which can be incredibly wearing mentally and emotionally. I don't know how large a man your husband is, but the physical care can also be very demanding, and gets more so with time - i.e. as he needs more and more help with the basic mechanics of daily living, like dressing, bathing, toileting. For some families, the start of incontinence is the point at which they find the caregiving at home too much. It's different for everyone - but don't drive yourself into the dirt trying to cope. Be realistic about what you can handle, and look after yourself.

Your husband is relatively young as well. Many people with progressive dementias are more elderly, and have a constellation of health problems leading to frailty. If your husband is healthy other than his dementia, his survival time can be longer. One of the major contributors to a shortened life is how complicated a dementia makes attending to other health concerns. If a person can't answer questions, if they can't cooperate with tests, procedures and treatments, it makes diagnosing and looking after many illnesses very difficult. Families often decide not to put their loved one through what can be scary or painful diagnostics or treatments (i.e. the family decides it's not worth putting the person through the distress, and elect to just keep the person happy and comfortable). If for example, your husband developed a cancer, you might decide that the cognitive and physical risks of surgery or other treatments are not really in his best interests, in terms of his comfort and quality of life.

When you are seeing the lawyer, now is the time to make sure the two of you have everything in order you may need - wills, powers of attorney for both financial and health care decisions, living wills, DNRs etc. This is crucial. Not only do you not want any legal glitches to add to your stress, but if something should happen to you - even an injury or illness - you need the paperwork in place to let someone else look after things on your behalf.

You might be interested in some of the stories told on this page - I know this is upsetting, but I thought it might be helpful to hear other people's experiences with Lewy Body, so you can get some idea of what may lie ahead.
http://www.lewybodyjournal.org/

Hope this helps a bit - please, feel free to ask me anything, or even just to vent. I know I haven't been specific about a time line. Assume he may survive some time and need a lot of care - and if you plan for that, you've got those plans in your back pocket and you can be pleasantly surprised or relieved if you don't need to put those plans in action as soon as you've feared. Nothing is worse not being prepared, and being plunged into crisis (whether emotional, physical, mental or financial) at a time when your coping resources are already tapped out.

Mary G.
Toronto