This disease moves inexorably through the brain, taking memories, thinking abilities, impulse control, personality, and independence as it goes. Modern medicine cannot stop it. Love cannot stop it. Prayer cannot stop it. It devastates what it touches, and as it does, it devastates real human beings, their families and loved ones, their finances, and their homes, their lives.
If each victim has only two family members who share their suffering, then this disease has taken twelve million people.
The world of AD is filled with doctors, nurses, social workers, therapists, researchers, volunteers, aides, caregivers, and families, all fighting every day. They fight to learn, to stop, to cure, to care, and to make the lives of these twelve million people better - or at least bearable.
This page is a tribute to one man, my father. He is an Alzheimer's victim, but that is only a part of who he is. Sadly, as the disease has rampaged, it has become the largest part.
Here are parts of his story, which has become our story as I care for him. At the bottom are some links for information and support.
I woke up this morning and I was here in this place. They tell me it is my home, but I find that hard to believe. I know I wasn't here yesterday.
That one guy left and another guy came. They are always coming and going. Today I was glad to see the other guy, but sometimes I don't like all the commotion. And he doesn't make very good coffee. I told him so. I think I'll go out for coffee.
I can't find the keys to my car. Are they in this drawer? I have lots of socks in here. I haven't put the socks in the suitcase yet. I'll need about three pairs. I would like to take this photograph too. I don't remember putting this hairbrush in here. Why would someone have done that? This is not my hairbrush anyway. I think it belongs to those people who were here. I'll take it downstairs and give it them.
That guy is here downstairs again. I thanked him for coming and told him I don't need him any more today, but he doesn't leave. He doesn't have any right to be here after I've asked him politely to leave. This is still my home. He says I have to talk to my daughter. Fine, give me the phone and I'll call her now.
When the bank answers I'll ask them how much money I have in my account. I will need money for the trip, so I'll go down later and cash a check. But first I will eat this breakfast. Is is for me?
I can't tell you when Dad was diagnosed with AD. He did visit a neurologist when he started having significant memory loss. At that time he was independent and we'll never know what the neurologist actually told him. He didn't share any of the information. Records indicate he may have known something at that time, but chose either not to hear it, forgot it, or chose not to share it. His GP said depression and dementia could have similar symptoms, and only one was really treatable. Since Dad had a history of depression he started him on medication for this. And so we went through the next few years.
If someone you love has memory problems or confusion, ask them to sign the releases necessary for the doctor to discuss the diagnosis, prognosis, and treatment with you. Remember that everybody has issues with denial, and if someone has dementia you will also be dealing with their inability to understand what they're told, or to remember it.
When Dad's dementia worsened, it became obvious that he would need more care. He began having hallucinations and failing to recognize family members. His GP referred him to a psychiatrist who could help prescribe and manage medications. This doctor not only helped with medications but was able to work with the family to help us develop coping strategies for living with AD.
If someone you love has dementia, get help. Contact your local Alzheimer's Association. Go to a support group. Get a doctor who knows and cares. Join the Alzheimer's' List. Visit the library. Surf the Net. You are not alone here. Don't let yourself become isolated.
Dad is at home now. He needs round-the-clock attendants to keep him safe. He is still very mobile and active physically, but his brain will no longer tell him the difference between a red traffic light and a green one, what a medicine bottle says, or even whether he has had any lunch. He does not know where he is at any given moment, or what happened five minutes ago. I do not know how long he will be able to stay in his home.
I oversee his care, dispense his medications, manage his finances, serve as his conservator, obtain his medical care, and try to make his life as pleasant as it can be now. Mostly what I do is love him and let him know it. He may not know who I am, but he knows how much I care.
.......Is he happy? I don't know. Sometimes. Sometimes he's angry, or sad. Sometimes he laughs. Very seldom now I get a glimpse of the man who was my father. Sometimes I feel guilty about medicating him to change his behavior, like the aggression, or to snow him so he'll sleep all night and not be up wandering the town. He doesn't even know what meds he takes; he takes what the doctor and I give him.......
Today Dad gave me a big hug and said he couldn't do without me. He doesn't know what I do, he doesn't understand, he never meant for this to be happening to us - but he DOES know how he feels.
I still don't know how to do this, but I'm doing it.
.........My Dad got ahold of the latest bill for his almost full-time in-home care. He's not supposed to see any of his bills for anything, as they upset him, and he's not very aware that he has caregivers. He studied the bill from the home care company, puzzled over the items and the total, looked out the back door at his tiny condominium rose garden (which is pretty dilapidated this time of year) and announced, "That is one hell of a lot of money for yardwork!!!".......
Emotionally frazzled today.
Very worn out with:
"Yes, Dad, you have plenty of money. Is there something you need specifically? What is it you are worried about? Yes, you have plenty of money. You want to go to the bank? Well, I always go to the bank for you. Is there something you need?" and so on and so on forty-eleven times a day every day.
When the truth is:
"No, Dad, you can't have any of your own money any more. No, you can't go to the bank, because they just call me and I have to come over there and rescue you and them. No, the bank won't give you your money, because I fixed it so they can't. No, you can't get the money to buy a car or a bicycle or anything else now, because I won't let you. I will not give you your own money any more, because I can't in good conscience."
Worn out with:
"Maybe we can talk about taking that trip tomorrow. No, you can't go today, because you have to go grocery shopping. Maybe you can go next week. Yes, we can talk about going, but not today. Maybe tomorrow. I have to work today, Dad, let's talk about that trip tomorrow. No, see, Dad, it's raining today. You don't want to go in the rain. How about if we plan that trip for Thursday? Yes, Dad, but........." and so on and so on forty-eleven times a day every day.
The truth is:
No, Dad, you don't get to go around the world again. You don't know where you are right now, or where you went yesterday. The houses you own that you want to visit don't exist. You will never travel by yourself again - you may not ever travel again, period. That's that.
Thanks for letting me snivel for a moment. Having gotten out the frustration I can go back and tell him a few more times, or as many times as he needs today, calmly and with patience.
ůMy Dad explained to me this morning that he would like to discontinue the service (the caregivers). It is still HIS home and he has a right to make some decisions about who is in it, and he would just like to live by himself, since he's still quite capable of taking care of himself..............and by the way, it was nice being able to see me, but he would like to go back to Earth now. (Yes, this was an actual conversation.)
May 4, 1988 - While Christmas shopping this year, I found a toy that intrigued me so much I bought one for myself (and several adult friends). It was a child's kaleidoscope that snapped apart and allowed you to place different pieces of colored plastic in it to create different patterns. I have always loved kaleidoscopes......
Lately I have been seeing Dad's mind in terms of a kaleidoscope, too - he has many bits and peices: people's names, people's faces, snatches of the past, current events, dreams - but they don't stay still in relation to one another. The kaleidoscope turns slowly and the pieces come into focus in a new pattern. My face appears with his sister's name; his wife's eye surgery becomes his; his mother returns to life. And then the kaleidoscope turns slowly again, and the pieces rearrange to present a different view.
When we add a new piece to his collection, we never know how it will come up in the next pattern. Nor does he; he has lost his ability to hold the kaleidoscope still for very long.