My mother had Early Onset Rapid Progression Alzheimer’s Disease.  It is as it reads: "Too young. Goes fast."  At the time, the National Institutes of Health were researching this particular facet of the disease, and they were anxious to have my mother for research, since she was still in the early stages. As one doctor told me, "We usually get them for study at the very end."  It would have covered all of my mother’s medical needs, but there was a catch: putting her in a locked ward environment to set a base line in her medical history.  When my father heard that, he said, "Absolutely not," and we went home.  I promised my parents I would be Mother’s caregiver, and I was (they lived blocks from me.) The strain was unbelievable (as anyone who has taken on that role well knows.)

 It was heartbreaking for me to see my beautiful, independent, multi-talented mother reduced to dependence and fear and clinging behavior.  When I dream now of my mother, she always has Alzheimers in the dreams, and I hate that, but it’s that damaging to be around it.  I can’t even think how Mrs. Reagan lasted as she did, since her husband went through the last levels, which I was spared.

 What would I tell you about it in warning or education?

There are levels to the disease. Learn them.  You’ll need to know as behaviors shift and skills diminish. 

Be prepared to see "covering" behaviors emerge early on, and dementia patients are very clever in learning little cover techniques that allow them to sustain themselves without alarming others. They will agree with a lot of what you say. Disagreement leads to discussion, and they don’t want to have to answer concrete questions.

Carve time for yourself. Easy to say. Just about impossible to do, and I did not.  Just thought I’d throw it out there.

One woman recommended the book "The 36 Hour Day," and I would as well in terms of setting up a home for this care.

 As things progress, clothing becomes difficult; buttons and shoe laces impossible. Prepare for snaps, pull on or velcro on clothing.

Be prepared to put locks on doors, shutting certain things off like stairwells, and there will be anger over that.  Locks on stove knobs.  Alzheimer’s people wander…a lot…and during the night.  You do not want the house burning down or to find someone in a heap in a stairwell.

My parents had a highly social life. People stay away.  Later her best friends told me "I couldn’t bear to see her that way."  Social support systems vanish. 

Prepare for other things triggering even more problems. Mom broke her hip, and the medicines from the surgery hastened the disease even more.  Because she was physically hail and hardy, her hip healed quickly. One of my friends spoke as they thought it when they said, "Her body is strong. It’s her mind that is crumbling."

 My mother was a masterful gardener, and she still, by habit went into the yard to pick up sticks or rake.  I remember one day driving by their street at this time of year, and she was out under her rows of blooming Bradford pear trees.  I sat at the stop sign and wondered, "Is this the last time I see this?  The last Spring?"  It was. Store your memories as they come. Hoard them.

Be patient.  There will be a lot of repetitive questions and comments. Singing in the Rain? For us it was, The Sound of Music." A lot of Julie on the mountain. A lot of Julie. A 96-year old woman I knew who just died had to have Fiddler on the Roof. Daily.

Odd things will continue to anger them even at the end.  For the Fiddler woman?  Then President Bush continued to piss her off, even with dementia.  She knew what she didn’t like.  For my mother, the day before she went into a coma, and I was driving her home from a day out, she pointed to an area to my left and said, "That is where that nasty (insert name here) lives." Dripping with contempt.  We don’t forget those people.  I will tell a story about that woman.  Not long after my mother died, that woman was featured on the front page Style section of The Washington Post.  She was doing "ladies who lunch" parties.  The news reporter didn’t come out and call her a bitch, but you clearly got the picture of a woman who was…difficult.  In the article, she gave her recipe for something my mother was famous for cooking in their group.  That morning my phone rang off the hook, "Did you see (…) claiming ownership of your mother’s recipe?  Livid. Again. People don’t forget. Not even those who should be.

Dementia patients can get into behaviors where they hide things.  Be prepared to take jewelery and vault it and buy substitutes, rather than spend fretful hours once again looking for something that’s gone missing.

Be prepared for arguments as to why they can’t drive anymore.  This was a huge issue with my mother even in her final days.

Something you aren’t told very often.  Skills diminish, but eating?  They go from holding a fork, to using their fingers, to forgetting how to chew. When I read they forget how to eat, I remember sitting there stunned with tears in my eyes.  I did not think I could bear it. I was spared learning about feeding tubes, although it cropped up later in the final days.

Towards the end, I remember standing in an adult diaper aisle at the market thinking "I don’t know the first thing about this," so start learning.

I’ve never known an Alzheimer’s patient that didn’t pace. Unending. And they can wander off. In a blink. Be ready for that. 

Be ready for rage issues. I was spared that, but I’ve seen it in others. If their violence is really bad, a lot of nursing homes don’t want to take them because they don’t want the responsibility.

A lot of communities have daycare for dementia patients. If you can get your loved one to participate, it would be a good thing. You would have some breathing space, and they would have their minds engaged. It didn’t work for us. My mother did not want to be with "strangers." She went into panic at the idea.

 Overall, remind yourself what you are seeing isn’t them, and it isn’t truly directed at you.  It’s the disease. I think this is the most hideous aspect of bearing up through it. It’s like having the person you love die, yet exist in this living death.

I know I’ve probably said too much, but I lived with it at a very intense level.  If you are with someone in the early stages? Please. Go to an attorney while they can still sign their name. Get the legal papers in order: a will, a power of attorney, perhaps a living trust, perhaps a trust set up at death to run for a set period of time. A living will.  Absolutely a living will. Hospitals get very nervous about making life and death choices without one. My parents went beyond the norm. My name was put on every bank account, every credit card, the car titles, the safety deposit box at the bank: everything you can think of: stocks and investments, IRA’s, …everything.  Please do this.  

I pray I am spared bad dreams tonight after writing all of this out. I hope it helps.