It was my birthday a few days ago, and I'm pretty sure my Mom forgot about it. I called her the day before to let her know we would be out of town and that I probably would not have my cell, and though she chimed in quickly with a "happy birthday," I doubt she would have called. I remember this summer on the twins' birthday, which she used to live for (see elaborate homemade cupcakes she made just a year prior), I finally called her in the afternoon to see if she wanted to talk to the kids. It's shocking, in a way, because family holidays were everything to her. At the same time, it's personally a little hurtful. Irrational, I know. But still hurtful.
Monday, September 28, 2009
Birthday blues
It was my birthday a few days ago, and I'm pretty sure my Mom forgot about it. I called her the day before to let her know we would be out of town and that I probably would not have my cell, and though she chimed in quickly with a "happy birthday," I doubt she would have called. I remember this summer on the twins' birthday, which she used to live for (see elaborate homemade cupcakes she made just a year prior), I finally called her in the afternoon to see if she wanted to talk to the kids. It's shocking, in a way, because family holidays were everything to her. At the same time, it's personally a little hurtful. Irrational, I know. But still hurtful.
Wednesday, September 23, 2009
One step forward, twelve back
Things were upbeat at the end of August -- Mom was actually doing quite a bit better after stopping the Exelon patch. The patch somehow made some of her symptoms worse, particularly social withdrawal and some of the compulsive behavior (staring, cleaning). Her doctor was talking about starting her on an SSRI, for which I'm eager; I've heard many FLD patients do much better on these drugs, and I'm not sure why they haven't put her on one yet.
Anyway. Saturday she fell and broke her arm. It's her second bad fall; the first, about a year and a half ago, broke her wrist in three places and brought on her major FLD symptoms. (Maybe the anesthesia - ? I hear plenty of folks are diagnosed after a trauma. Did anyone else have this experience?). She's depressed now, and upset, and so is Dad, of course. Both times she fell off her bike. Why she was again on a bike this time, I do not know. Perhaps she seemed so much more like her old self that she and Dad wanted to get out and enjoy life again as they used too. It's just too damn hard to admit to ourselves that those days are gone.
Anyway. Saturday she fell and broke her arm. It's her second bad fall; the first, about a year and a half ago, broke her wrist in three places and brought on her major FLD symptoms. (Maybe the anesthesia - ? I hear plenty of folks are diagnosed after a trauma. Did anyone else have this experience?). She's depressed now, and upset, and so is Dad, of course. Both times she fell off her bike. Why she was again on a bike this time, I do not know. Perhaps she seemed so much more like her old self that she and Dad wanted to get out and enjoy life again as they used too. It's just too damn hard to admit to ourselves that those days are gone.
Monday, September 21, 2009
Dementia toll climbs
On MSNBC.com today: Dementia toll climbs to 35 million worldwide; number is some 10 percent higher than predictions. Hopefully this will spur on some more research into causes of dementia diseases. I have my own suspicions, upon which I will elaborate soon. Article did say obesity and diabetes are contributing factors. We are in big trouble in this country as the population ages, that's for sure.
Saturday, September 12, 2009
The mourning starts early
My parents finally succeeded in selling our ancestral home, which used to be their primary residence in the Northeast. This was wrenching when it happened -- another piece of my youth gone -- but financially necessary, and quite a load off Dad's mind.
They collapsed their stuff into my house, which was just as wrenching, as there are now bits of pieces of their lives spilling into all my empty spaces. (I despise clutter. I don't like stuff; I keep very, very few things for sentimental reasons; I don't do storage. More on this draconian and, I realize, bizarre policy later.)
Some spaces were just too full, and my dad asked me to help my mom weed out about a third of her clothing, much of which was faded, stained, or out of date.
Now. While I enjoy cleaning out a closet as much as just about anything else in life (out with the old, in with the new!), this time, it felt uncomfortably like the post-funeral dispensing of the deceased's items that my family ritually endures. I don't know how your family does it, but in mine, almost everything is handed over to someone else, even shoes -- my Aunt June had about a dozen spectacular leather stilletos in every color of a peacock's tail.
First, the thought of pudgy Aunt June, whom I remember as perenially wearing polyester shorts and stretchy cotton houseslippers, squeezing her feet into these roach-crushers was rather bizarre. That fox stole over there, the veiled pillbox hat -- are we talking about the same person? Plus, I was too freaked out by her death, the careful display of a dead person's shoes -- "Take what you want!" -- and too young, at 12, to appreciate their beauty. But I regret to this day not taking the robin's-egg blue pair.
My mother didn't like the sorting and purging, either; not one bit. To her, I imagine it represented yet more intrusion into her choices and her life. We're her family and she loves us, but let's face it -- she's now basically under our control. And there really wasn't enough room in the closet for 20 years of accumulated clothing.
Plus, many of the clothes were too small due to her illness-related sugar addiction. We're vain ladies who are into clothes, so this stung. I tried to inject some humor by laughing at the padded shoulders we wore in the '80s -- nothing doing. She was particularly mute and withdrawn that day.
At the end of the ordeal, I suggested that we go upstairs to clip and paint her nails, as she's been having difficulty handling this herself . She snapped, "Leave me alone." I was actually glad to see her show some emotion, any emotion; while sad at the same time to be the instrument of her despair, and to be anticipating doing this again, alone, maybe in as soon as a few years.
I imagine this scenario isn't much different for others who have loved ones with a terminal diagnosis, but for FLD patients it just seems to start much earlier. They're still with us, and yet, not.
They collapsed their stuff into my house, which was just as wrenching, as there are now bits of pieces of their lives spilling into all my empty spaces. (I despise clutter. I don't like stuff; I keep very, very few things for sentimental reasons; I don't do storage. More on this draconian and, I realize, bizarre policy later.)
Some spaces were just too full, and my dad asked me to help my mom weed out about a third of her clothing, much of which was faded, stained, or out of date.
Now. While I enjoy cleaning out a closet as much as just about anything else in life (out with the old, in with the new!), this time, it felt uncomfortably like the post-funeral dispensing of the deceased's items that my family ritually endures. I don't know how your family does it, but in mine, almost everything is handed over to someone else, even shoes -- my Aunt June had about a dozen spectacular leather stilletos in every color of a peacock's tail.
First, the thought of pudgy Aunt June, whom I remember as perenially wearing polyester shorts and stretchy cotton houseslippers, squeezing her feet into these roach-crushers was rather bizarre. That fox stole over there, the veiled pillbox hat -- are we talking about the same person? Plus, I was too freaked out by her death, the careful display of a dead person's shoes -- "Take what you want!" -- and too young, at 12, to appreciate their beauty. But I regret to this day not taking the robin's-egg blue pair.
My mother didn't like the sorting and purging, either; not one bit. To her, I imagine it represented yet more intrusion into her choices and her life. We're her family and she loves us, but let's face it -- she's now basically under our control. And there really wasn't enough room in the closet for 20 years of accumulated clothing.
Plus, many of the clothes were too small due to her illness-related sugar addiction. We're vain ladies who are into clothes, so this stung. I tried to inject some humor by laughing at the padded shoulders we wore in the '80s -- nothing doing. She was particularly mute and withdrawn that day.
At the end of the ordeal, I suggested that we go upstairs to clip and paint her nails, as she's been having difficulty handling this herself . She snapped, "Leave me alone." I was actually glad to see her show some emotion, any emotion; while sad at the same time to be the instrument of her despair, and to be anticipating doing this again, alone, maybe in as soon as a few years.
I imagine this scenario isn't much different for others who have loved ones with a terminal diagnosis, but for FLD patients it just seems to start much earlier. They're still with us, and yet, not.
Wednesday, September 2, 2009
Making the most of the time we have left
I was talking with my mom's cousin last week, when she mentioned she'd be visiting my parents (in Florida, where they live, regretfully, now far from me) this fall. I'd be going down there for a long visit at Christmas, I said."We have to visit as much as we can, don't we," she said, sympathetically.
It hit me, then, that we really do need to do that. Faced with the decline we saw this summer, it's become painfully clear that there may not be many days left when Mom can enjoy herself, say, on a family outing. My folks already cancelled their yearly road trip to Maine because my dad just couldn't handle the driving and related caretaking himself, and I couldn't accompany them. Mom's already started to suffer from incontinence, and forgets to get herself ready before a trip, so there are accidents and so forth.
So today I told my boss at my biggest client (an international non-profit) that I would probably need to scale back my workload come December. I'll visit again during school break in spring, I and whenever else I can fit in some time. The out-of-state factor adds a difficult twist, because my kids are still in primary school.
This episode was painful both professionally and financially -- not least because I started sobbing in the middle of relating the situation. It's just too hard talking about it, still. What will life hold in six months for us all?
Tuesday, September 1, 2009
Temper, temper
Returned from a month's hiatus -- a blissfully dementia-free trip to a land far, far away -- to find things in a terrible state. Mom has declined, which is no surprise, but is a disappointment; I'd heard that patients plateaued for a while, and was hoping her symptoms would not change this summer. And my dad is back to some kind of frenetic controlling state, in which he tries to right everything that's wrong with the world, with me, and with Mom. This takes the form of constant reminding, haranguing or criticizing. The world remains mute and unaffected, but I'm pissed off royally and so is Mom.
Thing is, it's hard to keep quiet and not criticize her about this and that, and I imagine it's hard if you're living with the patient 24/7, as he is. Her habits are maddening. There's the staring, hanging over your shoulder when you're, say, making a sandwich or a phone call. There's the mad rush to eat, often starting while standing up. (What is it with the craving for food, by the way? Does anyone know? Must ask the doc.) There's doing the dishes, cup by cup, with a paper towel, or picking up crumbs from the floor, one by one, rather than fetching the broom.
I think we're also just enraged that this is happened, and we have no outlet for the anger. It just makes no sense. Obviously. But we are the careful kind, our family. Insured to the hilt, getting flu shots and regular dental checkups. We never saw this coming.
But after a while, I let it go. As long as she's occupied and seemingly content, I don't really care if she wanders around the kitchen for an hour, and if I have to ask her the same question three times before a response. When it's quiet in the house, and we're alone or just with the kids, I find it easier to relate to her. I try to quiet down, to dig down to her level, and to make eye contact, and it helps. But add my father, and it's a recipe for combustion.
Thing is, it's hard to keep quiet and not criticize her about this and that, and I imagine it's hard if you're living with the patient 24/7, as he is. Her habits are maddening. There's the staring, hanging over your shoulder when you're, say, making a sandwich or a phone call. There's the mad rush to eat, often starting while standing up. (What is it with the craving for food, by the way? Does anyone know? Must ask the doc.) There's doing the dishes, cup by cup, with a paper towel, or picking up crumbs from the floor, one by one, rather than fetching the broom.
I think we're also just enraged that this is happened, and we have no outlet for the anger. It just makes no sense. Obviously. But we are the careful kind, our family. Insured to the hilt, getting flu shots and regular dental checkups. We never saw this coming.
But after a while, I let it go. As long as she's occupied and seemingly content, I don't really care if she wanders around the kitchen for an hour, and if I have to ask her the same question three times before a response. When it's quiet in the house, and we're alone or just with the kids, I find it easier to relate to her. I try to quiet down, to dig down to her level, and to make eye contact, and it helps. But add my father, and it's a recipe for combustion.
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