Yesterday's WSJ contained a quarter page ad that was mainly blank entitled Picture of an Alzheimer's Disease Survivor. Underneath the blank picture, there is a statement that there are no survivors yet Alzheimer's Disease (AD) receives only 6% of the funds that cancer research receives. I am not sure how they came up with that number as I know private industry is furiously looking for treatment. In my past life, I was personally on several projects to potentially treat AD. Most were focused on determining how AD brain chemistry differed from normal and correcting that. Effort right now seems to be focused on preventing the plaque formation that seems to cause neuronal death. This is a much more difficult problem than cancer. Cancer is not a single disease but many different ones having in common 'uncontrolled growth' that leads to death. Some cancers are treatable; many are not.
When I first faced my diagnosis, I thought darkly Well at least I won't have to worry about Alzheimer's (and no more worrying about my sketchy 401K either). There is a strong genetic component to AD. My mother died from it but she seems to be the only one in her large family to have had it. Her sister at 90, for instance, is sharp as a tack. It is a dreadful disease that destroys your identity slowly: The Long Goodbye. It is said to be childhood in reverse. Instead of gaining skills as you age, you lose them. At the end, she lost the reflex to swallow, a skill a 7 month old fetus has. A movie that particularly irritates me is The Notebook in which the patient as played by Gena Rowlands (her earlier self played by Rachel McAdams: no physical resemblance there) has AD but is perfectly groomed and articulate. The only sign of the disease is that she has crabby moods occasionally and she does not recognize any of her family members. Her loving husband tries to jog her memory by retelling their love story. And for a golden moment, it does: Love conquers dying neurons! She dies in her husbands arms though she seemed to not have any other underlying disease.
AN ALZHEIMER'S PATIENT TIMELINE
Late 1990s: Mom is convinced something is wrong with her (beyond the BC she had had in 1991). She goes from doctor to doctor trying to inarticulately explain herself. Every sniffle must mean something. Her conversations with others are a list of her complaints. Verdict: Physically healthy; probable dementia.
2001: She is forgetting words. When trying to explain my father's kidney failure, she says: His kidnuts are gone! My father reports she can no longer do a simple math problem and is behaving erratically. His solution: Threaten her with a nursing home if she doesn't clean up her act. Her response: The day I go to a nursing home is the day I kill myself. I was surprised by this as she never makes emotional statements. Her weight drops from 140 to below 100. She is no longer permitted to drive but still expected to do errands that involve crossing a very busy road and walking a mile.
Fall 2003: Her formerly very neat handwriting morphs into a childish scrawl. She struggles to remember the order of words; both spoken and written. Her fastidiously kept checkbook no longer contains balance updates. In a few months time, her handwriting is completely illegible. She now weighs only 90 lbs. She forgets to wash her hair, do routine grooming, or wear a bra. She forgets she hates chocolate. In late fall, she moves in with me when my father was hospitalized. Although she knows my name, she refers to Steve as That nice man who lives here and Naomi as She. Josh pops in at one point and she recoils in terror. She has no idea who he is.
She formerly loved to put 1000+ piece jigsaw puzzles together. I get out a toddler's ten piece puzzle. She says that she can't do that. She remains very polite, thanking people for everything. She can recognize some letters of the alphabet and like to read them off signs as I drive. There's an A; I can read that!!Look, there's a B. I draw a bath for her. She no longer has any idea how to clean herself so I wash her. She regards me as a 6 month infant would. She roots through my drawers amazed at what's in them. I ask her not to to. She says, OK but 5 minutes later, she is ripping things apart. She likes to tear paper into little pieces. Her vocabulary is that of a 4 year old. She can still tie her shoes though, which is a 6 year old's skill. She starts to wet the bed. She can not be out of my sight for a minute but I need to work and I try to arrange a placement in a nursing home. My father does not want to pay and is sure that I am exaggerating everything.. She gets up and wanders around in the middle of the night. I tell her she needs to go back to bed. OK. Finally he agrees to permit her to go to a home at the end of September. After I settle her in, she asks if I am going to leave her there. Yes but I'll visit you every other day. OK and she shrugs.
Oct 2003 to November 2003: When I come, she's very excited telling everyone in earshot that My mother's here! My mother's here! She no longer knows my name. Soon My mother's here! morphs to My!
November 2003: Mom slips on something on the floor and breaks her hip.Her bones are very brittle and she has a sizeable hump on her back. Her sisters and brother who are much older now than she is here have great posture. As I was the person admitting her, I am contacted instead of my dad. He is furious and wants to sue. For what? I ask. She has a titanium rod inserted to stabilize the hip. Fifty percent of nursing home residents who break their hip are dead within a year. She loves to move however and paces incessantly and recovers.
Early winter 2003-2004: Upon admission, she was placed in a general unit as she was ambulatory and co-operative. The big question was whether she was a 'flight risk'. If so, she would need to be placed in the much more expensive locked down part. To my knowledge she never tried to escape. Services to remind her to go to meals were purchased. Initially she seems happy to be there and not under the thumb of her husband. She starts to become combative and knocks cigarettes out of the mouths of people in the smoking lounge telling them that they are bad.
February 2004: Mom becomes violent even though she never has been before in her life. She attacks her frail roommate and tears up everything she can find. She punctures her special air mattress needed for her sore hip. The nursing home kicks her out and she spends a month in a psychiatric unit where they try her out on different combinations of drugs to calm her down. She pleads to get out of there. I go to a 'family' meeting with the psychiatrist to see what underlying issues she might have that could be mistaken for AD. I find it annoying as it doesn't matter who she was, she is not that person anymore. The psychiatrist goes over a long list of meds and their side effects with my father and I. Since this is my line of work, I am familiar with them all but my father is shocked. But there is no choice. This is the last conversation I had with him in person. We talk once on the phone a few weeks later and he hangs up on me. When I see him in the hospital a month later, he is in a deep sleep.
April 2004: She now is in her own room in a locked Alzheimer's unit in a different home that costs twice as much. She recognizes me still and is happy to see me. She can speak 3 word sentences. We spend our visit walking back and forth. She loves to move. I bring her special snacks. She will eat an entire bag of cookies in one sitting if I don't carefully mete them out. She is gaining weight from the drugs. My father dies at the end of the month. I tell her: Oh, no one told me. Well I am telling you now. He was old, wasn't he?
My brother and I go to court to become her legal guardians and conservators. My father leaves behind the estate from hell.
Fall 2004: She is only able to say one word now. Yes. She still recognizes me, loves her treats and her walks. She also likes to set off alarms, cause floods, take apart toilets. I get many phone calls complaining of her behavior. She now needs adult briefs all the time. Over the next year, she is briefly hospitalized for possible strokes and infections. At one point, her sister visits and gets too close to her. My mother attacks her. Why does she hate me so much?my aunt asks. She has no idea who you are.
Fall 2005 to Fall 2007: She develops congestive heart disease. Her feet swell to twice their normal size and are purple. She does not respond to cardiac medication. She is accepted to hospice care but Medicare only pays if it could be proven you will die within 6 months. She looks to be on death's door at the intake interview but rallies over and over for the next 2 years so it is a struggle to get her re certified. She forgets how to walk and how to use utensils. She eats with her hands. Beyond 2006, I never see her smile. She no longer recognizes me. She still can say the word yes but uses it inappropriately. She can recognize questions from ones tone of voice and the answer always is yes. There is a cat in the facility. I bring it up to her so that she could pet it. Instead she tries to strangle the cat. She has forgotten how to walk and is provided a wheelchair which she uses for 2 years. She does not know how to make it move with her hands but she kicks off. Since she gets into trouble so quickly, they box her in with chairs. There is some question whether this is a restraint. She still loves to move so I take her outside where she can kick the chair into motion to her heart's content. At one point, I show her a X-mas display. She takes her arm and knocks everything down. For 2 years, there is not much change in her status.
The end: I visit her on a warm Friday afternoon and she is vigorously kicking the chair around per usual. I worry that I am letting her become overheated but when I touch her arm, it is cold to the touch. Strange I think. On Sunday night, I get a call saying that she has stopped eating and that hospice has been informed.
Tuesday the hospice nurse said that my mom's body was cold and she did not swallow if food was placed in her mouth. I visit her and she reaches out to me with a look of abject misery. I demand that hospice medicate her so she will not feel a thing. She is dead within 36 hours.
In the beginning, she is prescribed various Alzheimer's medications. There is no improvement in her ability but the drugs were approved only for mild to moderate AD. She has severe AD. Mainly she is given drugs to control her agitation. There is little left of my old mom by the time she dies. When she dies, I am relieved as this was no way to live, wanting to move but not being able.
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