The only reason I put this article on the home page - www.thealzheimerspouse.com - under Breaking News is because the link is very long to copy and paste. If you go to the home page, you can just click the link if you want to read the article.
Maybe it's because I'm having a bad week - getting up early and spending all day yesterday doing what I didn't want to do, just so Sid could have some socialization; getting up earlier today and driving 100 miles round trip for tests for Sid; then coming home and grocery shopping - heavy bundles into the car, out of the car, into the house, etc. etc. While he slept. Maybe that's why this article rubbed me the wrong way, but it seemed to reinforce the idea that WE have to do EVERYTHING. And it kind of ticked me off.
joan--this article is a little bit right. That is the problem with it. For all her education, credeentials and experience, she is writing about a part of the Alz picture like a Weatherman reporting on a Hurricane--"It's raining out there folks." The problem Behaviors are problems for the LO and the Caregiver. When treated for the problem behavior, the LO often mellows out. Certainly seems to me that shows a connection between the behavior and the agitation/anxiety they manifest. Plus,when the Caregiver gets frustrated with the situation there is sometimes a symbiotic reaction between the two which compounds the problem. The personal values and reacions of the Caregiver do exist and play into this issue, but the problem of ALZb ehavior belongs to both. On another point,she only discusses 2 behaviors and in reality there are more, some of which are more problematic. Not even touching on them, I think makes the article deceptive and a disservice to the Caregivers just learning about Alz.
I see some merit to this article...but...when I read articles like this, I feel like I am being told that if there is a problem...it is my fault. I resent articles that always give the simple, pat answer. I also resent the articles that have a simple prevention for AD...or cure (taking juju beans 12 times a day etc.)I feel some have not a real clue what 24/7 means. My DH is in a NH, early stage 7, but I clearly remember the 24/7 days. I think this adds to our stress.
The only REAL hands on help for cargivers come from this site. Those of us in the trenches deal with the reality of caregiving. Maybe I am just tired and jaded after 12 years.
I don't know, seems like she said the same things many of us have learned and try to explain to the newbies: agree with them, be patient, reassure, ignore when we can, don't let the behaviors "get to" us, etc. All valid points. It is just that as spouses there is so much more tangled into the equation. Perhaps the title of the article is upsetting.
Also, I am sure it is really hard to take care of your Mom, and I am not negating that. The frustration and all. HOWEVER< really, I took care of DH Mom, and what I saw was the family trying to pass her around no one wanted her.
I wonder what this persons situation was, financially, did she have any help and supporting family members. SO many of us here do not.
With a mate, your partner, there is a different connection, way different. Your heart will break watching your Mom dissapear, but it will SHATTER with your husband or wife.
Of course yes there is lots of good advice, sound and true.
But what goes around in my mind, is that those stress times and freaking out are made out to be WRONG, that we are to GET RID of that except for the rare times.
Maybe I read it wrong, I will go back again. Blah pooey on it sometimes..
yes, ok I read it again. And I still say, it is a whole different world when it is your love mate. We don't sleep with our Mom's. We don't count on Mom to help with the bills, to mow the grass, to tell us it will be ok and to hug us.
That's my two bits and I am sticking with it.
God bless her for taking care of her Mom. But she better not tell me how to act as this is different, or, I may have to bring up the slap thread again.
The writer sounds too much like the social worker she is and not like the CG to her mother for 16 yrs. We all have our own personalities and I know that I don't like to be told what to do. There was no way I could patiently answer the same question 5 times in 15 minutes. Mostly my way would be to walk into another room and close the door, others yell, others do have a world of patience. She says answering the question over and over does not hurt the CG, but I disagree. It does hurt, it interferes with our normal thought processes, it forces us out of long-established relationships with our LO, it turns our family life upside down, our personal lives are in limbo. And we're supposed to be patient and understand that 'it's the disease,' even when we know that's the case.
I read what some of you post and realize how lucky I was. It was just DH and me, newly retired, children out of the house but always supportive and there for emergencies. I crings when I think of those with small children still at home, careers on hold, plans and dreams gone before they even began. And money, never enough for so many other things. But our home was paid for, I had my old Pontiac, medical insurance - the only major expense was the cost of AD. Sometimes Joan has mentioned how her work has impacted the way she responds to Sid. I could never respond that way, my life has been different. Yeah, we all come from other places, and how long before we climb out of the river of denial and finally admit that AD is what it is, what we've been told over and over -- and some never get it.
I know that I've given advice that others don't want to hear & they'd be happy to wring my neck, and the best advice is that 'sometimes nothing works.' I cannot say the writer's advice is wrong, that she doesn't have valid points, I just feel that she is too removed, altho she said she was a CG to her Mom. Her training and education, in my view, have overtaken what it means to be a 24/7 CG with a life full of other responsibilities and desires, that behavior affects the CG the most because we continue to remember and live with the hurt and disappointment long after our LO has moved on to something else. Why would anyone even ask the question?
sorry i find no relevance in caring for a family member vs spouse. totally different ball game. the mental struggles are much more profound and complex and nobody understands this unless you are the appointed spouse doing the caregiving. thats my 2cents. :)
A social worker from our local AA was a CG for her mom. She didn't have a clue about what she should have been speaking about. I'm afraid I got back up on my much used soapbox and explained the difference between mom and a spouse. I live in a 55+community and implored neighbors to give neighbors a break when they know they are as much a shut in as the person they are taking care of. Some actually listened and promised to be more helpful. It has been working.
When I read that article the first thing I thought was that she took care of her Mom, not her husband. Also she probably wasn’t a 24/7 caregiver so I wonder how many times she actually had to hear the same question over & over. I totally agree with Coco & everyone else. It IS frustrating to read articles like this.
Hi Joan, I was a journalist, usually the headlines are not even written by the author of the article. They are written to get attention and reaction. Sometimes they actually reflect what is in the article! But beyond that I agree with Coco,divvi and the others that dealing with a mother and a spouse are totally different. If a parent is incontinent it is uncomfortable, maybe, but when your spouse wets himself at the “firm” Christmas dinner and doesn’t even think it is a big deal, that is totally different! The ”mindset we have locked ourselves into” is also the mindset that society has determined is the norm, the acceptable social behavior. I mean if everyone went around wetting or messing themselves then we would have a smelly and unsanitary place to live…. “the mindset we have locked ourselves into” cracks me up I mean what are we “Kandy-kolored tangerine-flake streamline baby”? idk what has gotten into me but I am rambling now. Much of what Ms. Sollito says is like Weejun wrote, just common sense advice like we often see here i.e. not freaking out when dh asks the same question (like we all do) because it hurts their feelings etc. Bottom line how we react when we see an article or advice is how our day is or how much sh*t we shoveled that day!
I can take even a bit of "reprimanding" from the men and women here, as they are truly in the trenches, the same one as me and much much harder.
It is not acceptable for me to "take it" from outsiders, do gooders, know it alls, and givers of platitudes, AND mean awful family members.
Also, I am sorry I did not remember that at star by the name means our loved ones passed on, I am sorry.
For Soolow, hello nice to see you again. Please think of this, on THIS site, people do care. I know that you and others are on my mind, in my heart, and I think of all of you everyday. HOW DIFFERENT from any other internet site, where it is either fun and games or religious opinions. I participated on a Christians website for years, but, this is so much better as I know people CARE.
Who knows, maybe some of us will meet someday. Let us not be lonely and hopeless and sad every moment. If I had not found this place , I would be so much more like that.
Coco, I so totally did Not mean to reprimand you. I think you are wonderful, a ray of tropical sunshine! The headline is horrible and judgmental, worse than the actual article that is all I meant.Apparently my writing skills or lack thereof are rusty. My brain is not functioning well. This a.m. I went to the gym and since it was in low 20's I decided to warm up my car so I started it and went back inside for 5 mins and then was searching the house for my keys .... all the pockets from clothes from yesterday, drawers, hahaha sheepish much.
Your statement - "Bottom line how we react when we see an article or advice is how our day is or how much sh*t we shoveled that day! " is EXACTLY right. When I started this thread I said that maybe I reacted so poorly to the article because I was having such a bad day. It felt like the author, although she had valid points, was just piling on more stuff for me to do and be responsible for.
oh no grendelsma, I was offering up a generalization...that after reading so much here, I was able to glean hope and to get my chin up, with a bit of tough love. And yes, shoveling doo doo ha ha ha so true.
Joan yes that was a good way to put it. The piling on of stuff!! Noooooo enough already!
After reading this article, I think of a phrase that my husband liked to use, that seems applicable here. He said, "If it's not a problem for THEM, they think it's not a problem." Simple, but very much to the point, especially in this situation.
Once I tried to explain to a therapist how hard it was to care for my husband. He said that he was the caregiver for his mother, so he understood completely. I wanted to say, yes, your mother is at home with a full-time caregiver. My husband is out in the waiting room while I talk to you, and I'm hoping he's still okay when the appointment is over. It really is different when you are doing it 24 hours a day. It's also different when you are taking care of the person who used to cheer you up when you had a bad day. Now their disease is causing the bad day. If it's a parent, you can get away for a little while and have a normal life with your spouse occasionally—go out to dinner, make love, have a meaningful conversation with the person you love. When it's a spouse, there is no more normal life.
This article sounds a bit like a woman who had a two-hour labor telling her friend she didn't really see what the big deal was with childbirth, when the friend was in labor for 36 hours and wound up having a c-section. Sometimes having the "same" experience doesn't really mean that you can understand what it's like for another person.
I didn't think much of the artical. It appeared to me that the purpose of it was to sell a book. That it took a few parts of the book and printed them much the same as a movie runs a trailer to get you to come see the movie. The treailer runs the best parts of the movie and we say that looks like a good movie and we go see it. many times you have already seen all the good parts in the trailor and there really isn't much to what is left to see once you buy a ticket and see the movie.
To me the artical is the trailer and the book is the movie. It has presented the good parts to try to get me to want the buy the ticket(the book) the differance is I have already seen the movie.
I think that to put it very simply, their problems become ours and then when their problems so overwhelm us, then our problems with it all can become their problem because they do not understand what drives us nearly to drink!