Alzheimer's sucks

[Shirley]

We discussed this a bit in the politics thread where I mentioned a Facebook friend who is dealing with this. He wrote this today:

Yesterday, Diane Rehm interviewed Meryl Comer, the author of Slow Dancing With a Stranger about her husband's Alzheimer's. If you're interested in this disease, I recommend you listen to Diane's interview. I'm sure it's archived. Ms Comer writes beautifully and is a smart guest.

One caller did annoy me. It was a young man who said, "I know how you feel. My mother has Alzheimer's." I shouted at my radio. "You don't know. You don't know how it feels." I know people mean well, but this is different.

I lived with my mother for 18 years. I've lived with Jenny for 34 years. Jenny was my partner in all things and now that partnership is gone, evaporated and replaced by this new relationship. I'm no longer a husband. I'm a caregiver. Every sock that's washed and folded, every meal cooked, every pill taken and appointment made is my responsibility. It's like caring for a small child except you take out the fun and joy and fill that space with grief and sadness. These are my days.

I'm glad people are becoming more aware of this disease. But that doesn't mean it also doesn't depress the hell out of me.
I'm struggling now, unable to write or clean the house or mow the grass. I take care of Jenny, but nothing else gets done. I sleep for 10 or 12 hours a day. I can barely shower myself. And yet, I go on. I have no choice.

I'll shake this black dog in time, but Jenny will still need me, still rely on me to feed her, clean her, and care for her. And right now, that is the best part of my day.

Hearbreaking

[govmentchedda]

We discussed this a bit in the politics thread where I mentioned a Facebook friend who is dealing with this. He wrote this today:

Yesterday, Diane Rehm interviewed Meryl Comer, the author of Slow Dancing With a Stranger about her husband's Alzheimer's. If you're interested in this disease, I recommend you listen to Diane's interview. I'm sure it's archived. Ms Comer writes beautifully and is a smart guest.

One caller did annoy me. It was a young man who said, "I know how you feel. My mother has Alzheimer's." I shouted at my radio. "You don't know. You don't know how it feels." I know people mean well, but this is different.

I lived with my mother for 18 years. I've lived with Jenny for 34 years. Jenny was my partner in all things and now that partnership is gone, evaporated and replaced by this new relationship. I'm no longer a husband. I'm a caregiver. Every sock that's washed and folded, every meal cooked, every pill taken and appointment made is my responsibility. It's like caring for a small child except you take out the fun and joy and fill that space with grief and sadness. These are my days.

I'm glad people are becoming more aware of this disease. But that doesn't mean it also doesn't depress the hell out of me.
I'm struggling now, unable to write or clean the house or mow the grass. I take care of Jenny, but nothing else gets done. I sleep for 10 or 12 hours a day. I can barely shower myself. And yet, I go on. I have no choice.

I'll shake this black dog in time, but Jenny will still need me, still rely on me to feed her, clean her, and care for her. And right now, that is the best part of my day.

Hearbreaking

Agreed. Alzheimer's sucks. I'll have to give this Rehm interview a listen.

[brian]

I can't stand Rehm's voice since her stroke a few years ago, I know that's awful, but I said it. It's difficult for me to listen to her show.

[govmentchedda]

I can't stand Rehm's voice since her stroke a few years ago, I know that's awful, but I said it. It's difficult for me to listen to her show.

Was it a stroke? I feel like it's a degenerative disease, and not a stroke.

And yes, she's hard to listen to.

ETA - Yep. Not a stroke, but Spasmodic Dysphonia. Why do I half remember shit like this?

[brian]

I can't stand Rehm's voice since her stroke a few years ago, I know that's awful, but I said it. It's difficult for me to listen to her show.

Was it a stroke? I feel like it's a degenerative disease, and not a stroke.

And yes, she's hard to listen to.

Yeah, I think you're right. Knew it was something like that.

[Shirley]

I can't take her shows either, sadly. I always feel a little guilty turning away.

[HDO45331]

My mom has had this for (who knows) over 3 years. She went from a strong woman, in great health, to the point, right now, of not knowing me. I have not visited her for over 2 months, as I come away completely depressed. (They say she is happy, but how the fuck do they know.) It breaks my heart to get the blank stare, for a few seconds, before she goes back to looking at the Hallmark Channel.

Originally, she had a few very minor issues, and I attributed that to age. Then, about three years ago, I gave her a call on a Friday afternoon, to confirm going out to eat with us that night. She said "OK, but if your dad doesn't get back here shortly, I will just go without him." Pretty innoculous statement, other than the fact that dad had died 17 years before that. That floored me.

The next thing, I got a call from her on my answering machine, asking if I had seen her (long-deceased) parents.

She would walk 2 miles to the grocery store (after we took her keys) during the summer, when it was in the high 90s. She would try to walk home with 4-5 sacks of groceries. Her refrigerator, freezer, and cupboards were completely packed. I could not get a frozen pizza in the freezer with a sledgehammer.

I tried all I could do to help her keep in her home, as I remember my grandparents when my uncle moved them to a home close ot him. I will never forget grandpa saying "I want ot go home." Finally, I could not take any more, and agreed to move her to a (great) local nursing facility. She was first in assisted living, then went to a higher floor, which is much like a rest home environment. This happened over the course of 2 years, after numerous health problems.

I have left instructions with my wife, that if that time comes, to please smother me in my sleep. Mom always said that if she got to be like her mom, she would end it all. And, that was a strange thing coming from her. However, it is so insidious and creeps so slowly, a person does not know what is happening.

I think I need a drink.

[Shirley]

Damn, HDO.

That reminds me. I need to call my sister back. She left a cryptic message about my mom that makes me think something like that may be starting with her (my mom, not my sister). My dad told me earlier this year that she's had occasional memory lapses - nothing major, but you always are a little concerned. Fortunately, they are deciding to move themselves to a retirement place now, so if the time comes sooner or later (and I guess it always does), they won't have to move again.

Man.

[sancarlos]

It's so sad. My grandmother died this past summer, after having lived the last ten years of her life with Alzheimers. She was up in Canada, so I rarely saw her. She was always very chipper and pleasant, but every time you met her, you had to introduce yourself. She'd say, "well, of course. I knew that!", but of course, she didn't know you from anybody. It was brutal on my uncle and aunt, and frankly a blessing on everybody when she passed on. I hope to God that nobody else I care about gets Alzheimers.

[brian]

Damn, HDO.

That reminds me. I need to call my sister back. She left a cryptic message about my mom that makes me think something like that may be starting with her (my mom, not my sister). My dad told me earlier this year that she's had occasional memory lapses - nothing major, but you always are a little concerned. Fortunately, they are deciding to move themselves to a retirement place now, so if the time comes sooner or later (and I guess it always does), they won't have to move again.

Man.

Hopefully it really is just random memory lapses. That's not unusual of course. The last four or five years of my grandfather's life (he died at 87 a few weeks ago) he was having these mini-strokes that caused short-term memory lapses for about 10-15 minutes. As much as I hate to say it, even something like that is vastly preferable to something like Alzheimers.

[BSF21]

Not to turn this into something political, but reading shit like this is exactly why I believe I ought to have the right to end my own life on my terms. Nothing scares me worse than no longer being able to communicate to my loved ones that I'd like to die now please.

[bfj]

Respectfully, go visit your mom. Who knows if somewhere deep inside her brain, it registers. Even if you can only deal with it for a few minutes. IMO it's the right thing to do.

Just my .02, sorry you have to go through this.

[howard]

…I ought to have the right to end my own life on my terms.

You do. Just because an unjust law attempts to abridge your right doesn't mean you have to obey it. Just makes it more difficult to to exercise your right.

[mister d]

Respectfully, go visit your mom. Who knows if somewhere deep inside her brain, it registers. Even if you can only deal with it for a few minutes. IMO it's the right thing to do.

Just my .02, sorry you have to go through this.

I was going to ask about the exact opposite; if your visits are unpreventably affecting your life with those who understand and retain how you're acting post-visit, isn't skipping out better? At some point, its far closer to visiting the cemetery than your living relative.

(Source: Watching my mother and uncle go through this with my grandmother.)

[Shirley]

Damn, HDO.

That reminds me. I need to call my sister back. She left a cryptic message about my mom that makes me think something like that may be starting with her (my mom, not my sister). My dad told me earlier this year that she's had occasional memory lapses - nothing major, but you always are a little concerned. Fortunately, they are deciding to move themselves to a retirement place now, so if the time comes sooner or later (and I guess it always does), they won't have to move again.

Man.

Hopefully it really is just random memory lapses. That's not unusual of course. The last four or five years of my grandfather's life (he died at 87 a few weeks ago) he was having these mini-strokes that caused short-term memory lapses for about 10-15 minutes. As much as I hate to say it, even something like that is vastly preferable to something like Alzheimers.

Talked to sis and it wasn't really anything about mom's memory. Just standard disagreements that regularly happen between one of my sisters and one of my parents. Sis seemed to think that maybe mom was more stubborn than normal, but given the source, I'm lending that no credence.

And yeah, my mom is nearly 75. She's gonna forget some stuff from time to time. I haven't seen anything or heard any evidence to make me think she's going downhill faster than you'd expect.

[bfj]

Respectfully, go visit your mom. Who knows if somewhere deep inside her brain, it registers. Even if you can only deal with it for a few minutes. IMO it's the right thing to do.

Just my .02, sorry you have to go through this.

I was going to ask about the exact opposite; if your visits are unpreventably affecting your life with those who understand and retain how you're acting post-visit, isn't skipping out better? At some point, its far closer to visiting the cemetery than your living relative.

(Source: Watching my mother and uncle go through this with my grandmother.)

Is this just for Alzheimer's? Because visiting a patient slowly dying of ALS/Pan Cancer/insert disease here, leaves me depressed also, but I don't visit them for my good, I visit them to be with the patient.

[mister d]

Only for patients who have no idea you're there, where the visit is out of perceived obligation versus benefit to the patient, yes.

[The Sybian]

Is this just for Alzheimer's? Because visiting a patient slowly dying of ALS/Pan Cancer/insert disease here, leaves me depressed also, but I don't visit them for my good, I visit them to be with the patient.

I would say so. I have no idea what I would do in HDO's situation. I would feel obligated to visit, but if my mother didn't remember me or want me there, there is no benefit to her in having me visit. From other anecdotes I've heard, it sounds like many late stage Alzheimer's patients get annoyed or pissed off about visits. If it doesn't help his mother, and only hurts HDO to visit, what is the point?

I get sick just thinking about what a horrible disease this is. My mother has long believed she will get Alzheimer's. Not in a morbid way, and I don't think it runs in her family, just sort of mater of fact. Spending the past week with her, I see a deterioration in her memory and cognitive ability. She is 67, and it is probably completely normal, but still strange to see. My parents don't seem any older than 50 or so to me, but when I think about it, pushing 70 is starting to get old. They both hit planet fitness 5 days a week, and I was impressed at their ability to keep up at Disney for 5 days. They kept up the pace, and my Mom stayed up past midnight every night and woke up by 7. They even went on all the rides, which blew me away, as my father has never done any ride more intense than Pirate's of the Caribbean. They both did Space Mountain, Thunder Mountain and Splash Mountain.

[bfj]

Is this just for Alzheimer's? Because visiting a patient slowly dying of ALS/Pan Cancer/insert disease here, leaves me depressed also, but I don't visit them for my good, I visit them to be with the patient.

I would say so. I have no idea what I would do in HDO's situation. I would feel obligated to visit, but if my mother didn't remember me or want me there, there is no benefit to her in having me visit. From other anecdotes I've heard, it sounds like many late stage Alzheimer's patients get annoyed or pissed off about visits. If it doesn't help his mother, and only hurts HDO to visit, what is the point?
.

Do you think your mother would leave you alone in a hospital if you didn't remember her?

[The Sybian]

Is this just for Alzheimer's? Because visiting a patient slowly dying of ALS/Pan Cancer/insert disease here, leaves me depressed also, but I don't visit them for my good, I visit them to be with the patient.

I would say so. I have no idea what I would do in HDO's situation. I would feel obligated to visit, but if my mother didn't remember me or want me there, there is no benefit to her in having me visit. From other anecdotes I've heard, it sounds like many late stage Alzheimer's patients get annoyed or pissed off about visits. If it doesn't help his mother, and only hurts HDO to visit, what is the point?
.

Do you think your mother would leave you alone in a hospital if you didn't remember her?

No, but in sound mind, I can honestly say I wouldn't want her to feel compelled to visit if I didn't recognize her and put her through hell seeing me like that. I know she would still visit anyways.

[bfj]

Is this just for Alzheimer's? Because visiting a patient slowly dying of ALS/Pan Cancer/insert disease here, leaves me depressed also, but I don't visit them for my good, I visit them to be with the patient.

I would say so. I have no idea what I would do in HDO's situation. I would feel obligated to visit, but if my mother didn't remember me or want me there, there is no benefit to her in having me visit. From other anecdotes I've heard, it sounds like many late stage Alzheimer's patients get annoyed or pissed off about visits. If it doesn't help his mother, and only hurts HDO to visit, what is the point?
.

Do you think your mother would leave you alone in a hospital if you didn't remember her?

No, but in sound mind, I can honestly say I wouldn't want her to feel compelled to visit if I didn't recognize her and put her through hell seeing me like that. I know she would still visit anyways.

My point was originally, that maybe somewhere deep inside, they know you're there, but can't articulate it. Who knows. There is something therapeutic in holding someone's hand and kissing their cheek. To just not visit because it is hard on you, isn't something I understand.

[The Sybian]

My point was originally, that maybe somewhere deep inside, they know you're there, but can't articulate it. Who knows. There is something therapeutic in holding someone's hand and kissing their cheek. To just not visit because it is hard on you, isn't something I understand.

I totally get where you are coming from, and I don't disagree at all. I can also understand HDO's decision, and I have no way of knowing how I'd handle it.

[DC47]

My mother had dementia and chronic obstructive pulmonary disorder. She didn't appear to know who I was in her last year or so. When she said "Are you Ray?" (her brother, I know what she said and that she was confused from an every-day rationality point of view. But I have no idea as to what else she was feeling or thinking. It's quite possible that she was in an altered state that I couldn't begin to understand. Somehow, in a way that is obscure to me, my presence may have been comforting in some way. Or not. I'll never know. But I knew each time I traveled 1200 miles to visit her, that there was a chance that I might be bringing her some kind of unknowable gift, in addition to a heart full of pain and a mind full of confusion.

The visits weren't easy on me. When I was back home, it wasn't easy either. Just in a different way. There was no right answer as to what was the right amount of visiting. And of course this was all mixed in with the often awkward work with my brothers and sisters as we tried to handle the details of medical care, financial matters, and the 24/7 staff we were providing inside an assisted living center.

All in all, it was a devastating experience. And that was before it was capped off one morning while I held my mother's hands as she died; outside the hospital window to the south the plume from the burning towers rose in the sky.

Looking back, I wish I had visited a few more times. But I have no way of knowing if it would have made a difference to anyone. I'm certainly glad that instead of using my ticket for the next morning, I got on the last flight on the evening of September 10.

[bfj]

Damn allergies

[Giff]

Damn allergies

Video is blocked here at work, but it got dusty just reading the article.

I apologize if I've shared this story before. I dated a girl whose dad was diagnosed in his early 50s. I met him after the disease took hold, but he still remembered some of our interactions. We took him golfing one day and I hit a hole-in-one. He called me Ace all the time. They also took away his guns, but couldn't find one of the shotguns. He took me aside one day and showed me where he hid it. He said he didn't want to use it again, just wanted to have it since he loved his guns. I felt bad ratting him out, but it was the right thing to do. He was diagnosed in early 2000 and passed in early 2004. Between my girlfriend and her two brothers, I saw the spectrum of how people can react to their loved one having this awful disease. Until I'm in that situation, and hopefully I never am, I can't judge any of the reactions.

He did have one of the best lines ever. We were eating dinner one night at their house. He just put his fork down and proclaimed "bacon tastes good cause pigs don't do situps". Very true, Bill. Very true.