Thursday, September 6, 2007
...a grossly inadequate Alzheimer's health care system
I get a kick out of the lady that writes me and says I should spend my time more usefully by joining a walk to raise money for Alzheimer’s research. Or by lobbying my legislators for more money for an Alzheimer’s cure. Baloney. I’ll leave that to others. I have more important stuff on my mind. Such as the inept care-giving afforded so many Alzheimer patients. Only perfunctory care at some nursing homes. And exhausted and depressed 24/7 care-givers spread so thin that they too often harm themselves and their patients. I’d rather raise hell about that. That’s where I’d rather focus attention. It’s a problem that goes mostly ignored. Read the Alzheimer’s message boards daily. You’ll come across some very dedicated care-givers. But mixed in are some folks that have no business being care-givers. They’re in bad shape, some of ‘em. Emotionally. Physically. Mentally. They need care more than their patients. They quite possibly do serious harm. Because they are overwhelmed. Maybe in some instances through no fault of their own. But others should know better. They should find ways to get respite. So they can do a decent job of care-giving. Some of those care-givers want pity parties. To get them through. Well, they need more than that. They need time off. To recuperate. To prevent burn out. They need a health care system that provides better care for people with Alzheimer’s and other dementias. That’s what I’m fighting for. For immediate relief. Immediate solutions to existing problems. Not the least being the fixing of a grossly inadequate Alzheimer’s health care system. –Jim Broede
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15 comments:
Yes, folks, read some of the anonymous comments in this blog. Terrible stuff. Naysayers. Negative thinkers. No practical solutions to health care problems in the USA. We've got Alzheimer care-givers who want to be pitied. Instead of raising hell over the lack of public and private services to help them through the staggering challenge of dealing with the Alzheimer's epidemic. Alzheimer patients are given shortshrift far too often. It's a national disgrace. Care-givers overwhelmed. Unable to cope. And that's bad news for the patients. Some of 'em even cared for by care-givers that talk of suicide. Unstable care-givers. Angry care-givers. Depressed care-givers. Yes, there are good care-givers, too. But let's not ignore the problem. Some care-givers aren't suited for the job. And we as a society have to do something about it. --Jim Broede
Well Jim, I have left you anonymous comments. The truth is I am not a caregiver, nor do I know anyone with Alzheimer's. I came here from Hometown. I then visited the Alz. site. I have read many of your posts. You have a different side of yourself that I never seen before. That side ain't good. I am sorry that so many have to go thru what they do with the patients. I do not feel "they" are bad in any sense. It must be awful what they have to go thru. Then to be talked about on this blog by you is a shame.
Think of it, folks. Care-givers that come to the Alzheimer’s message boards are probably the cream of the crop, for the most part. Some of the best because they know enough to seek help, to get assistance, to adapt and to openly discuss the problems and challenges of care-giving for dementia patients. But still, some active care-givers are in relatively bad shape. Mentally and emotionally. Imagine what it’s like in situations where care-givers don’t have the savvy or inclination to do something about improving their situations. The ones that don’t even let it be known that they are in dire straits. The ones that barely plod along. It’s a scary thought, isn’t it? –Jim Broede
Here we have, folks, a comment higher up in this column from someone who remains anonymous. Admits tbat he/she isn't a care-giver and knows no one with Alzheimer's, and then tells me that care-givers with dementia patients are not bad in any sense. Well, I've been a care-giver for 13 years, and I know plenty of people with Alzheimer's, and I know beyond a doubt that there are some pretty bad care-givers out there. And some darn good ones, too. And if we ignore the bad ones, and pretend they don't exist, it should bother our consciences. --Jim Broede
I did not suggest that anyone was to be ignored! I suggest that EACH and EVERY one get compassion, praise and help. Its a tough job, one I hope I never have to aquire. Please do not twist my words.
From what I have read, they do the BEST they can, I don't think you saying negative things helps. Its interesting that you can say negative things, yet if they defend themselves you twist it to how awful they are. Jim no one is perfect, including you. As you have stated in another posting. This caregiving as it seems to me is different for everyone. It looks to me as the situations are always changing, never the same. Its not written in stone on how, when and where things happen. Please do NOT use me against these wonderful people that are caring for loved ones. I have yet to hear that one has killed a loved one they are taking care of. They are doing the best they can with what they have.
Remember Jim, No one likes to fail, putting blood sweat and tears into caregiving deserves praise, and comfort especially from one that claims they are a survivor.
No, dear 'hometown.' they all don't do the best they can. Some of 'em fail. Miserably. That's my point. And even if it's only, let's say, 10 percent, that adds up to a huge number of care-givers that fail. And I suspect that 10 percent number is on the low side. Some of these care-givers need help. They have no business being care-givers in their present situations. They should be weeded out. For their own sake. But especially for the sake of the patients. You seem to think that because all care-givers may be doing the best they can, that it's all right. And it ain't. Not by a longshot. And you admit that you aren't a care-giver, and that you don't know anybody with Alzheimer's. That puts you at a disadvantage. Makes it hard for you to understasnd just what is happening. If anybody is twisting words, it's you. It's time that people like you really understood the situation with Alzheimer's, and that many, many patients are getting inadequate care because of inadequate care-givers. Don't get me wrong. There are some darn good care-givers out there. But there are some pretty bad ones, too. As a society, we've got to do something about that. Pronto. That's the core of my message. --Jim Broede
A woman named Fran posted this on the Alzheimer's message boards today:
"I just need to vent! I am so anxiety ridden and so depressed. I'm taking care of my mom and my family. I work 4 days a week and am on call once a month on the weekend. I don't get much help around the house. My days off are spent running around like a chicken with my head cut off trying to keep up. To top it off, I have been making really stupid mistakes at my job. I'm a home infusion nurse. I have written down wrong lab tests on lab slips. I even put the doctors name on the space where the patients name was supposed to go on the lab slip. I completely forgot to label blood tubes, so they couldn't be run and had to be redrawn. My employer, than God is very understanding and even pointed out that these incidents didn't start to occur until after my mom came to live with us. But I feel like an idiot. I can't seem to focus. It is 6:30 Am and I am getting ready to make breakfast, get everyone up, shower, take my son to school, get my husband out the door to work, finish getting myself ready and then getting my mom all set for the day. Then off to work. I have so many loose ends to tie up and don't know where to start. I just checked my checking account and my bank now charges, not for legitimate overdrafts, but for using your debit card if your deposit hasn't cleared yet. So they have charged me $336.00. I hate Citizens Bank. The seal on our toilet upstairs broke and water is leaking into the kitchen. The handle on our lawn mower broke. I was able to wrig it up with a handle from our old lawn mower. The belt on our dryer broke and it cost me 110.00 to have it fixed. The list just goes on and on. It's the old saying "if I had no bad luck, I'd have no luck at all". Does anybody here believe in curses? That's the only thing that I can figure is going on. It seems like nothing good ever happens, only bad. I am becoming numb! I pray for God's help. I'm not sure if he is listening to me. Please, please pray for me and my family. Perhaps the prayers of many will help turn things around. Thanks for listening! Fran."
Well, folks, I told this woman she needs more than prayers. She needs practical help. From an effective health care system. Tell me, whose fault is it that this Fran is in this horrible situation? As a society, what can we do to help Fran? I mean in practical ways. Prayer isn't enough. --Jim Broede
And don't tell me, folks, that this woman isn't doing harm to herself and her patient/patients. I'm not necessarily saying it's her fault. At least not totally. But we've allowed the burden to fall on her. Maybe other family members are to blame. Maybe Fran is to blame for not finding adequate help, adequate relief. Maybe the whole system is the problem. Whatever. We need to fix it. This woman is all too typical. It's happening to others. Every day. In virtually every city and town across the nation. And some of us pretend it ain't happening. --Jim Broede
You have absolutely no right to complain about the health care system. You are all talk and NO action. You can sit in your chair forever and write to your heart's content about how wrong everybody and every thing is, but that is all you do. You'll "leave it to others" to do? Sure, you are "raising hell", but to WHO?? Who reads this, except a few forum members?
Have you ever voiced your concerns about the health care system inadequacies, or the war to ANYONE who could really do ANYTHING about it??
That you are fighting for a better heath care system is ludicrous. Who are you fighting?
You tell caregivers that if you lived close by, you would come over and help. HA! I once asked you to research online(no footwork, mind you) any available assistance for a member in MN, who was in desparate need. You never even responded!
Yes, you do talk the talk.
Maebee
Dear Maebee:
I have every right to complain about the health care system. That's precisely how one brings attention to a wrong. By talking about it. By complaining. Directly to people. And in print. Why do you think I got into the news business? Why do you think I became a writer? So that I'd have a forum. A way to right wrongs. By summoning public attention. One reason why I have a blog is because I didn't have enough freedom on the Alzheimer's message boards. Because I felt like brooding. About lots of things. About injustices. So I created my own forum. And people keep coming. We're averaging more than 1,000 hits a week. A nice start. And we're attracting people like you, Maebee. People who become angry. People who spread the word. People who tell other people come and see broede's broodings. Yes, it's worth seeing. Worth reading. Isn't that why people keep coming back? People like you, Maebee. --Jim Broede
Who is "we'? You and "larry"?
BTW, I do not recommend this blog to ANYONE.
Have you ever, ever advocated for Alzheimer's sufferers, other than in the forum or here? You have been through it all. You are in a position to make a difference, if you wanted to. Oh, I guess I just answered myself, didn't I?
Maebee
Maebee:
You are so silly. You asked if I've ever advocated for Alzheimer sufferers outside this blog and the Alzheimer's message boards. Of course, I have. I've even gone to the Minnesota state health department inspectors to try to cultivate interest in an experimental type nursing home, where my concept of good vibes therapy could be tested. Where the only patients in the memory care unit would receive extensive daily supplemental care from a loved one. It would significantly improve the quality of life for nursing home residents. I also visit residents at Birchwood, the nursing home where Jeanne lived for 38 months. Oh, so many things. --Jim Broede
Maebee:
I'm also advocating that clowns like you visit nursing homes. Often. In full regalia. That would help bring levity to dementia "sufferers," as you put it. I don't think they have to suffer. With good vibes therapy they can often have their spirits lifted. I'm sure my spirits would be buoyed if I could see you in your clown outfit, complete with facial make-up. I might split a gut laughing. Or pee in my pants. --Jim Broede
Broede's Broodings said...
"Maebee:
I'm also advocating that clowns like you visit nursing homes. Often. In full regalia."
Actually, Jim, I have done this. It was very rewarding.
"• [ intrans. ] ( suffer from) be affected by or subject to (an illness or ailment) : his daughter suffered from agoraphobia."
Yes, that is how I put it.
MAEBEE
Maebee:
Good for you, Maebee. I think your activities as a clown show off one of your most endearing sides. And hey, you suggested in another post that you think I find you intimidating. That's funny, Maebee. And wrong. I find you just the opposite. I find you very likeable, really. And rather comforting. Especially when you allow yourself to be a clown. Some people think I'm poking fun at you for it. But really, I think it's your most admirable trait. Being a goofball. A clown. A little bit like me when I become Crazy Jim. It's a way for us to hang loose, isn't it, Maebee? We shouldn't always take ourselves too seriously. --Jim Broede
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