I was getting ready to head to work when my brother called me, to relay the information that my Aunt Judy, who was diagnosed with Lung Cancer last winter, is in the hospital. She had recently undergone her second Gamma Knife radiation treatment for tumors in her brain. At this point, they don't seem to be sure as to what is really happening or why, but....she has numerous dementia symptoms suddenly. She doesn't recognize my uncle or their children, she is very confused. She can't move her right arm at all, and seems to be blind, too.
The saddest thing is that all the tests that the hospital have done so far show good things physically: No tumors are currently detectable in her brain at all. The tumors in her body continue to shrink and no new ones have appeared (She has been taking Tamoxifen, which has been shown to extend the life of lung cancer patients). Her heart is good, her bloodwork looks good too. Just her brain isn't ok.
From what I can find on the internet, dementia is a very rare side effect of the Gamma Knife procedure. Based on what I know about my mom, I'm also wondering if the dementia was already starting, and was just "helped along" by the procedure....but if that was the case, why did there not appear to be any dementia following the first procedure she had in January? Regardless, things do not look good.
My uncle is thinking that if she does not regain any of her abilities, she may have to be moved to a nursing home or a hospice house. And his heart is breaking. And, since this aunt and uncle are probably my most favorite relatives in the universe, except for my mom....well, I'm really sad, too.
I am hoping that it's a temporary setback. But I knew from the "get-go" that the prognosis for Stage 4 lung cancer was not good. I guess, since my dad died of lung cancer, I kind of had an idea how things would go....of course, that's like saying that since my mom has Alzheimer's, I know how other Alzheimer's patients will present.....but you know, you try to cling to what's familiar to you, and my dad is/was my sole experience with lung cancer. And he had brain tumors too, but of course in the 1980's, they didn't have the Gamma Knife radiation, or any of the fancy scans that they have these days. So it's really like comparing apples to oranges, but I keep doing it.....
Anyhow, if you are a praying type of person, and feel like saying a little prayer for my Aunt Judy and my Uncle Neil, I would greatly appreciate it, and probably they would, too.
Saturday, April 21, 2012
Sad tonite
Posted by Carol at 11:49 PM 1 comments
Labels: Alzheimer's, dementia, dying, family, hospice, hospital, memory, nursing home, side effects, stress
Sunday, April 15, 2012
Sex and the Bipolar Hubby--adult topic, sorry!
I need to talk to someone about this, and, this blog seems to be where I do the talking......so.....DH. He's not working, as we all know....basically, he sits in a chair all day and watches movies. He doesn't clean the house, doesn't fix anything that needs fixing (and he does know how to fix stuff), doesn't do much at all. If he's not sleeping, he'll let the dogs out. And unless I nag him, that's all he does. If I do nag him, he might bring the garbage down to the end of the driveway. Or maybe transfer clothes from the washer into the dryer. But he NEVER folds the clothes or puts them away. It's the same ol', same ol'.
With that said, I know it's been going on a long time. I'm not in denial any more, for sure. The way things are is pretty much how things are going to be from here on out. I'm sure of it. If I want things to change, well, I can't hope things will get better "someday". They aren't going to. I am going to have to make the changes or quit griping about the things I don't like. With that said, I'm kind of tied to the chair as far as changes go for right now. There is no wiggle room in the budget to allow me to save a little for a "new life for Carol" fund. Our house is way underwater, even if you somehow managed to overlook all the broken stuff. And even if I decided that foreclosure was the way to go, well, the animals are my family, too, and who on earth would rent to a "family" like this? I do have "someday" hope, though. Two of the dogs are elderly. Several of the cats are elderly. This won't be the situation forever. Someday I'll be able to move, with or without DH. I hope things get better, I really do. But my tentative plan is to make changes that make things easier for me, and then if I can fit DH into those changes, well, I'm ok with that, as I did marry him "in sickness and in health". But I'm extremely tired of living like this. Probably that's a whole 'nother post.
Which brings me to this: DH and I no longer see eye-to-eye as far as um....marital privileges are concerned. As far as I'm concerned, there are a lot of reasons why I'm absolutely not interested any more. Starting with "he's not attractive", but that really is the least of it. I can see with my heart and not my eyes, so his physical beauty or lack thereof would not even be an issue if there weren't these other issues. He's not a "partner" to me, he's a piece of the furniture on a good day. We aren't a team any more, I'm doing it all and just supporting him. I work 60 hours a week, and if you add in commute time, it's well over 80. My mom has Alzheimer's and he doesn't go to see her, even with me. Basically, the way I see it, in the "give and take" of marriage, he's just taking. And I'm just giving. Very unbalanced. Yet, he just doesn't seem to get it.
Some nights it just feels like "one more chore". Other nights, it seems like "I went to work today, I got groceries, I visited my mom, I set up appointments.....I made sure there was something for supper....and you sat in a chair. And you want me to do more. To make you feel good. Not a chance." And then there's the whole partner thing. I don't feel like he's my partner. He doesn't go out of his way to make me happy. But he expects me to do that. And for the most part, I do. And it makes me angry just typing this. Because it really shouldn't come down to "what's in it for me?". But it feels like there's already so little in it for me that asking me to give more is just futile. And he gets all hurt when I am not interested. I've tried to explain it before. I just don't really know how to do it well without saying hurtful things. So I just keep refusing. I don't even want him to see me in any state of undress any more, because I'm afraid he'll think it's an invitation (he has before). But this hurts his feelings too. But unlike other issues we've had in the past, I stand my ground, probably because I just can't bring myself to be ok with it any more.
I admit to feeling rather discouraged lately. I'm not sure why, really--nothing has gotten worse (but nothing is better either). There's no end to this in sight unless I create one. I'm tired. I've been doing this for over 5 years now, and things are not much different than when I started, except that I've taken steps to control things that I can control. I'm not getting younger. I don't have a life except for my animals, and I don't even have time to enjoy them like I should. I'm trying to be supportive, but nobody's supporting me. That sounds kind of selfish to me, when I think about the fact that if he had Alzheimer's, I wouldn't expect him to do anything more than what he's doing now (or not doing), so maybe my problem (once again) isn't DH, it's the mental illness....? And the fact that I don't really know how much is laziness and how much is mental illness.....well....thanks for listening....
Posted by Carol at 4:29 PM 9 comments
Tuesday, April 10, 2012
This is what I want when I get old
A Dutch village dubbed "The Truman Show" for dementia patients is getting praise from Alzheimer's experts in the U.S.
The tree-lined streets of Hogewey, a tiny village at the edge of Amsterdam, boast shops, restaurants, a movie theater and a hairdresser. Its 23 apartments are carefully crafted to feel like home to 152 residents.
But Hogewey is not a real village; it's a nursing home.
"Our director compared it to a theater," said Isabel van Zuthem, Hogewey's information officer. "The frontstage is what all the residents experience as a normal way of living, their normal home. But backstage, we are a nursing home. Everything is arranged to give all residents all the care they need. But they feel like they're living a normal life, and that's what we think is very important."
To read the rest of this story, click below:
http://abcnews.go.com/Health/AlzheimersCommunity/alzheimers-disease-dutch-village-dubbed-truman-show-dementia/story?id=16103780
Posted by Carol at 11:10 AM 2 comments
Labels: Alzheimer's, dementia, elderly, memory, nursing home
Sunday, April 8, 2012
Happy Easter
Well, here we are, Easter again. I'm going to head over to the nursing home at noon to have Easter dinner with my mom. I'm not bringing DH this time because when I do, he just makes a point of making sure I know he's miserable there--that really really bugs me, because my mom really likes him and he never wants to go see her--but I guess really, it's just one more thing that I wish he would do that he doesn't.
Things here have been pretty uneventful lately--DH is still on the lower dose of Lithium, "That Guy" sometimes seems to be waiting in the wings (DH sometimes gets irritated easier than he used to) but hasn't made a full appearance yet.....DH is still not working. His nights and days are all messed up. He "goes to bed" at the same time as me, about 9pm, then by 1am, he is up again. Then he goes back to bed a few hours later and does it again. I'm actually a little concerned (but not a whole bunch). I bought him a frozen pizza because I was so proud of the changes he's made as far as spending--I thought he deserved a treat. That was almost a week ago now, and he still hasn't eaten it--that's weird. Very weird.
DH has gone to get the free food a couple of times now, and it helps a lot! Our grocery bill has gone way down. Aside from that, he barely leaves home. Actually, he barely leaves his chair in the living room :-( but he's not constantly asking me to buy him stuff, not complaining that the generic stuff we have isn't any good, etc....he's been very accepting and that's strange too. But a very good kind of strange, because it does take some stress off of me.
My mom still calls me "Donna Mae". I asked her one night, "Do you remember how you and I met?" (I was trying to figure out who Donna Mae was to her) but she couldn't remember. So I just said "It seems like we've known each other forever!" And she agreed.
Well, aside from that, things have been pretty boring. I go to work every day, come home, see my mom, take care of the animals, and go to bed. There hasn't been much drama. I'm ok with that. But it doesn't make for a very interesting blog, does it?
Posted by Carol at 6:06 AM 1 comments
Labels: "That Guy", Alzheimer's, Lithium, mom, nursing home, work