At her place, she couldn't really keep things timed very well when she was cooking. On the phone earlier, she had gone into elaborate detail about how she was making a time chart to help her keep track of when certain foods should be started and others finished. It was almost as disturbing as the stuttering, since she's never had a problem with this kind of thing before. She was obviously having a big struggle with the cooking, and periodically, I'd go into the kitchen and see if she needed any help. Once, I asked her if she had her time charts ready. She didn't answer. "Do you want some help with those potatoes, " I asked her. "I don't know what I need" was her response.
She spent as much time as possible away from everybody. She barely spoke, and I don't think I saw her smile once. Not like her at all.
Not like the "her" I used to kind of sort of know.
She yelled at her dog twice- both times loud enough to make everyone stop what they were doing and stare around nervously at each other, one time loud enough to make Isabelle give out a whimper.
Later on, most of us were playing a board game, and she opted out. She had played this game before. Only once, but it was fairly recent. She said she was pretty sure she wouldn't understand the game even if she tried. OKay. She didn't want to sit down at the table with us. She kind of hovered around the outside, staring at the game, trying (I think) to look like she was in deep thought about what move might be made next.
"Mom, do you want to pullup a chair and sit with us?" I asked.
"I know where the chairs are and I'll get one if I want one," she snapped back at me.
Okay.
I wasn't able to talk to Dan much about it, but now the ice on the subject of Alzheimer's and Mom has at least been broken. We'll talk soon.
Anyhoo-- Dan's coming home for Christmas, and he and Jenny will be staying with Mom while they're here. With the head's up from Mary and I, they shold be able to observe Mom and give us some feedback. We're hoping Dan might have some additional insight, as he's a pharmacist.
We also talked about the possibility that Mom might even be trying to give us hints that she needs us to help her. So much talk about "The Home" lately, such increased forgetfulness, and recent talk about what she wants done with her body when she dies.... if she is indeed waiting for us to jump in and help, we aren't doing her any favors by waiting. So, we think that the next time any of us hears her being forgetful and irritated about it, we will say somethign like, "I've noticed that you're having memory trouble lately. Considering the family history, why don't we schedule a check-up for you?" Or something simpler like, "You've been pretty forgetful lately, huh?" and hopefully that will provide a window of opportunity for her to start talking about it.
That plus all of the recent talk about being put in a home..
Mary and I are getting together tonight to talk things over and decide what to do.
Since I've been concerned recently about the state of my mom's mental health and impending Alzheimer's diagnosis, I've been spending some time recalling Grandma's last days and death.
When I visited her in the home, I was struck by the lack of memories I had of her. I am still not completely sure that there were so few to be had. It might be the case that there were slightly more, but I can't remember them all. Either way, my memory is what it is (piss poor) and I had only 2 or 3 memories of Grandma to ponder while I spoke to her and held her hand.
I found that my memories did not matter in a scenario like this. We weren't very close (or very far apart). We just didn't really spend a great deal of time together, didn't know each other very well. But the few memories I had were good ones. I remember riding bikes with her one day and how she got very upset at a young mother who was also riding a bike-- with a baby in the seat behind her--and smoking a cigarette, letting the smoke blow straight into the baby's face as she rode along. Grandma was really upset and honked her little bike horn and yelled at the woman loudly as we passed. I don't recall exactly what she said, but I know she was never vulgar. She was probably telling her to put the dang thing out before her baby choked to death.
I remember her taking me grocery shopping at the market by her cabin in
I remember her in a snowmobile suit, but I don't remember why or where.
I remember that on Thanksgiving day every year, Grandma made a huge feast, and every year, she forgot to serve the cranberries. Around the time that people were getting ready to leave, many hours later, she would jump up, smack her forehead and shout, “The cranberries!!” she also thought her gravy was lumpy, but no one else ever detected a single lump as far as I know.
I remember that her driving was horrendous.
I think she might have taken me bowling once or twice, but I’m not sure about that. It may have been a dream.
I remember that she used to rave about my looks. She would go on and on and on about my face and tell me I should be on magazine covers.
She liked to play penny poker with us kids from time to time, but I really don’t recall specifics.
Those are all of my actual memories of Grandma.
Anyway, as she lay there, staring upward with blank eyes, those memories were not important, and it was not important to have any more of them. She wasn’t that person anymore. And the memories I DID have were pleasant, so no negativity surfaced to interfere with the connection we shared in our hearts. That connection doesn’t rely on memories-good or bad, but I think it can be masked by too much negativity.
I’m fairly concerned about this aspect of things with Mom. Not that it does any good to project that far into the future- but I am anyway. I have a few more memories of Mom, but all of them are negative.
In fact, it was just recently that I’ve been able to start learning to kind of divorce myself from wanting her to be someone else. I’ve wanted her to be a good mom for so long, that it really blinded me to who she is and how she was toward me. I’ve always wanted her to like me, but I’m learning how to let go of that.
Now that she’s apparently going the way she’s going, I guess I don’t have time to work on that any more.
Maybe 4 or 5 years ago, she gave me the diary she kept when I was a baby, I think as kind of a loving gesture. I was pretty much horrified by what I read in there. Apparently I had dysentery when I was 5 months old, and spent a great deal of time in the hospital. I almost died. My mom wrote one line about it in her whole journal. “Katie’s still in the hospital.” That’s it. No reflection on it or sadness about it. Nothing. Just facts.
I remember her breaking various household objects on my butt, slapping my face, threatening to roll my “bloody head” down the stairs….she wasn’t actually what I would call a violent woman, though. Mostly, she ignored everything that made her uncomfortable. If they gave gold medals for ignorance, she’d be rich.
But while Mom wasn’t violent, my dad was, and she did nothing to protect me from him. By his own admission, he hated me since I was born, and I bore the brunt of his insane rage. (He’s a paranoid schizophrenic, though we didn’t have a name for it back then, and he was unmedicated.)
I was sent off to live with my (dad’s-side) grandparents for quite some time during my formative years. Mom denies any knowledge of this, and for all I know, she actually forgot about it. Dad…..is not really someone you’d want to ask about that.
Anyway, main point is that she did nothing to protect me from him. And she should have.
I think the strongest memory I have of Mom is this: I was maybe 15 or 16, and I was on drugs and drinking way too much. I’d seen things that no one should see and I’d done things that were killing me on the inside, and I was desperate to open up to someone about it. Mom told me one time, in all sincerity, when she sensed I was troubled, “Katie you can tell me anything at all. I’ve been in trouble too, and I can understand what you’re going through.” My heart lifted so high, I thought it would choke me. “Really?” I asked her. “Like what trouble?” I could barely wait for her to tell her story so I could get mine out. But she said, in a near-whisper, “When I was in 8th grade, I smoked a cigarette behind the gym, and the Sisters caught me. I was suspended from school.” My heart sank lower than it had ever been before. I knew I couldn’t tell her anything. I think about that day a lot now. I wonder how things might have gone differently for me had she been someone I could confide in.
In one way of looking at it, it’s very heart-warming that she would offer herself like that, and was so willing to hear hurtful things all for my sake. I know now that she usually will go to any lengths imaginable to avoid hearing unpleasant things, so this was really a departure for her- done out of love for me. That’s one way to look at it.
The other way is this: By that time, I’d already been through drug rehab once and locked away in a juvenile mental health ward (by my parents) once by that time. So, keeping that in mind, why in the world would she basically advertise that she really couldn’t stand to hear anything worse than smoking? She KNEW the things I had been involved with. Or at least she SHOULD have known. If she didn’t, it’s only because she shut her mind against it. Looking the other way was her specialty, and she did it very well.
I can’t recall any tenderness. I know she provided for my basics, and was kind to me when I was sick most of the time, but isn’t that to be expected from a mother? Okay, so she did the bare minimum that a mom is supposed to do. Well, almost. She provided no protection. It doesn’t exactly give me warm fuzzies to think about it.
I don’t really feel angry at her for any of this. Just really sad, and like between the two of my parents, my childhood was basically ruined. Like she didn’t think any more of me than she might think of a pair of shoes, or someone she read about in a newspaper article. This hasn’t changed over the years. She still maintains basic civility and inane banter at nearly all times, but never really seems to sink in to what she’s doing or who she’s talking to. Seems clear to me that this is a big factor in why she treats me the way she does,(me especially because I’ve always been the one to challenge her with icky things she doesn’t want to know about) and maybe even part of why Alzheimer’s got her. We all have our shortcomings. It’s okay. I just am having a very hard time imagining me taking tender loving care of her. I haven’t had enough time to process all of this crap between us. I’ve just come to the point where I am learning to accept the facts as they are-rather than how I want them to be, and now everything changes dramatically. Again.
I don’t even know where I’m going with this. I don’t hate her and I don’t wish any harm on her.. I mostly pity her. It’s not her choice to be the way she is. Or if she knowingly made bad choices, she would not have done so if she had been right in her head and in her heart. I don’t think she’s been right for a long time.
When I think of a person sitting at a loved one’s deathbed, I see them remembering the good times, and lamenting the loss of that potential. I picture them forgiving the bad times because they really don’t matter so much in the end.
When I see me sitting by my mother’s deathbed, I see nothing.
I hope I can treat her really well and make her suffering as bearable as can be. I don’t fear that I’ll be cruel or anything like that. I fear I won’t be able to open up enough to let that kind of pain flood through me. I’ve been closed to her for so long now, and the opening I’ve been able to manage so far has been the result of my being objective in my view of her. I feel like it will require a great deal of personal closeness to give her a decent final few years. That closeness isn’t there.
With Grandma I didn’t have to worry so much, because she had other people to care for her. Mom doesn’t.
Obviously, we will have to get her to a doctor, and we will both be studying up and seeing what we can do and learn the right ways to go about all of this. It's so strange that my mom just buried my grandma (who died from Alzheimer's just 2 years ago.)
I have long suspected that Mom would be somewhat likely to develop this disease, but I thought we would have more time before it started happening. I guess everyone always thinks they have more time than they do- for everything.
I spent last night mainly just crying on O's shoulder. He's a great comfort i n times like these.
I can't imagine what it must feel like to know that you are losing your mind. I've seen Alzheimer's before, and part of me hopes that it will progress very quickly, so that Mom does not need to linger long in the land of knowing and being unable to defend herself. The other part of me wants to keep her around and sane for as long as possible so that I can maybe learn who she is and what she's all about..though this is unlikely. Mom is not an open person. She does not share and she actively fights against remembering anything at all. (I do think this played a role in her getting this disease.)Plus, this has nothing to do with what I want or how I feel. It's just an evil, impartial disease.
Mary and I are the only two of her kids who are still in the state, and as such will be the ones to provide for her care. I am the only child inthe state who doesn't have small children, so I will be taking most of that duty. I am pleased to do so as much as I could be, though Mom and I are not close.
When Grandma was in the home, she had her husband Larry with her every single day. The man rarely left her bedside for five years. My mom won't have anybody like that to be with her. I know this is projecting into the future (but not by much) but I hope Mary and I can find a place for her in the same home Grandma was in, "Catholic Eldercare." They took great care of Grandma, they let Larry sleep there most nights, they were helpful to visitors, and they were respectful of the dignity of their patients. Plus, Mom's Catholic, so that shouldn't be a problem. Also, it's within walking distance of my house, and that will be wonderful to have her so close. The money is impossible for Mary and I, but our brother Dan (in Fargo) makes a very good living as a pharmacist. We haven't talked to either brother about this yet. I think we'll get an actual diagnosis first.
My company covers Work Comp for some State-run nursing homes, and I can pretty much guarantee you that Mom will NOT ever set foot in one of those shit holes.
Beyond all of that, I am exceedingly sad for my mom, in a way that extends far beyond sadness and into grief and terror.
Beyond THAT, I am scared to death that I will be next in line. I've been told that the heredity is strong, and that the mother-to-daughter chain is the most common way for it to pass along. I know there are ways to help keep it from happening (thought I don't know what mostt of them are, yet) but I don't know how much all of those efforts matter in the long run. If you have the gene, do you just get Alzheimer's? Or is it more like if you have the gene, you're more prone to Alzheimer's, and then it's how you live and use your mind that decide it for you? Obviously, I have a lot of studying to do.
I am scared for my sister-not only that she will also inherit this madness, but that she will survive to bury her grandma, her mom and then her sister, and to worry herself sick over the future of her daughter. How horrible
Since Grandma got sick, and especially since she was in the nursing home, I've wanted to volunteer with Alzheimer's patients. I haven't gotten around to it- go figure. Now, Mom is headed down that long dark road. In one selfish and shallow way of looking at it, this is another great opportunity for me to finally get around to it. I will be spending a good deal of time at a home, eventually (and probably soon) so what better way to get involved not just with Mom, but with anybody who needs some company?
Mom told me, shortly after Grandma died, I think, "I don't want you kids trying to take care of me when I get like that. Just put me in a home when I can't care for myself any more." She had been traumatized by the experience of having to bathe and toilet her own mother, and does not wish any of us to have the same experience. I respect that, very much. In fact, I have said the same thing to my own kids, though of course it still remains to be seen whether or not I'll get this damn thing.
But before we have to deal with putting Mom in a home and making visits and all, we need to talk to her about all of this. We need to actually sit down with her and explain what we've been seeing- to burst her bubble of denial and let her know that yes, we see it too and you can't hide from it. How do you tell someone that the next few years will be filled with excruciating pain and misery...and then they'll die a horrible death that will actually serve as a sweet release from their torment?
My god....
I will help her in any way I possibly can.
I am no good at the in-betweens. I am no good at being a care-taker.
With Grandma, it was much easier, because she had a regular care-taker (Larry) and she and I weren't overly close. Mom and I aren't close either, but she's closer to my heart in many ways- I think because there's a great familiarity. Not necessarily fondness, but a familiarity nonetheless, and a basic loving care. It hurts my heart so much to think of my mom lying on a hospital bad the way Grandma did- sticks and bones staring open-mouthed and glassy-eyed to a place beyond my reach, nurses coming in to wipe her bottom and feed her applesauce.
There is a family bond. It doesn't matter that she wasn't a very good mom to me. It doesn't matter that we don't see eye-to-eye as adults. When it comes to matters like this- the matters that really matter- family DOES mean something. I care for her in a way that I don't care for other people. It's that simple.
Part of me wishes to disconnect from her now; to protect myself from the hell that is to come. But that part is small and I've already all but crushed it. She will need me now more than ever. She'll need all the help she can get, and we will need to help eachother, too.
In the last couple of weeks, Mom's been suggesting big group projects-- like painting the walls in my townhome, or rearranging the kids' bedroom and adding furniture. I don't know how actively aware she is of how she's slipping away, but it seems clear to me that on some level, she knows she's leaving soon, and she wants to spend as much time with us as possible. to create memories that she won't recall and that will serve to sadden the rest of us when she is gone.
I've never been very good at taking comfort from past memories of good times shared with loved ones once they've died. Maybe that's something you have to learn how to do. Right now, it just makes me even more sad and lonely. My mind doesn't remember the good thing and leav it there...it goes directly into remourse over how that person will never again be able to do those things again, and it remembers how much I miss them. It's not happy. I don't really understand (except in theory) how that could be a happy thing or a comforting thing.
I am full of grief today and I am afraid.
I am so grateful that I have O. He's such a great guy. And I'm glad I have my sister to go through this with me- both of us knowing that we could very well make that long dark journey someday ourselves. I am grateful that I have my mental faculties with me now, and that I probably have 20-25 years to help build them up in hopes of preventing this thing from killing me, too. I am grateful that so much research is being done onthis disease and that I live in a State with excellent doctors and reseach facilities. We have resources of many types we can turn to. We will make it through this--hopefully not only to meet the same awful lonely end.
It went pretty well, I suppose. I spent kind of a lot of money on supplies that didn't get used, but that's probably my fault for over-estimating how well they would do and for under-estimating how stinking LONG any clay-related project takes.
My mom was pretty confused by some very simple concepts. Even with visual aides. I almost felt like shaking her a couple of times to "wake her up," but of course I didn't do that. I KNNOW she doesn't have a creative bone in her body and I would never expect her to come up with her own ideas or anything like that. But when I had to instruct her on how to roll a log of clay...that was pretty frustrating. She's not that out of it with everything, thankfully. But a couple of seriously disturbing things did happen in that regard.
The most disturbing of them is this:
Mom called when she was on her way over. She wanted to know if there would be food available or if she shold stop and grab something on the way. I told her I'd be making hamburgers for everybody around suppertime, but if she was hungry NOW, (12:30) she should probably stop and grab a bite. She said ok. The day went on with the clay and the ornaments and whatnot. As I started cooking the burgers, Mom decided it was time to get going home. She packed up her car and came back in to let it warm up a little while. She smelled the burgers cooking and said, "Those burgers smell fantastic! I think I WILL stay and have one after all!" I told her that was a great idea.
She took off her coat, hung it up, and lingered in the living room talking to Adam while I went back into the kitchen. No more than two minutes later, Mom comes into the kitchen and asks, "So when were you going to start those burgers?"
I looked at her, looked at the burgers frying in the pan right in front of us, and said, "They're already cooking." She said, "Oh good! I'm starving!"
Her mother died from Alzheimer's not very long ago. I'm afraid she is going the same way. And it seems like she assumes this to be true, and doesn't care one bit to try to fight it. I don't know. How much can you really fight something like that anyway?
I know the Alzheimer's heredity from mother to daughter is strong. I hope it skips a generation every so often.
