In addition to this site I have been following a site on www.nyt.com; a blog called "the new old age".
I can get on that site and follow link after link. I can't post there because I don't have OS6(?).
Anyway, I go there to explore topics that interest me, and pretty much all of them do, as they relate to my circumstances.
I found a blog subtitled "angry as hell"; at least I think it was that one and it concerned how angry caregivers are with the current situation- alf's, nh's, caregvier's situations, etc.
Almost without exception- the article and responses referred to adult children and their situation with elderly (and it did specify elderly) parents.
I think I read all the comments, at least all those I could access, and only ONE posted about how these issues related to spouse care and that one post had only one comment. (Actually, I think that poster has posted here but it is not for me to say and I want to respect that poster's privacy).
I read about pay for caregivers that seems to exist in Australia and in some areas of Europe but that does not seem to be applicable here for spouses. I read that children's assets cannot be touched for care for parents, but as spouse, my assets, even though they come from my parents are available to the government. According to the article, have you sacrificed your career, your earnings to give at home care-(to your parents), if yes, you should be paid, or at least compensated.
Posters said, I gave up one year, three years, six years, etc. They continued to say, this is not right, we have to organize, we have to lobby, we have to be somehow compensated for what we gave up for our parents. No mention of what we have given up for our spouses.
Is there any lobby for us? as spouse caregivers, how alone are we?
You might take a look at the Well Spouse Association: http://www.wellspouse.org/ It includes people dealing with any kind of spousal illness, but a lot of the members have spouses with chronic declining diseases.
link didn't work for me. I think more of us than not have some level of frustration with the kids as relates to the LO in our case dealing with ALZ. It seems to me in my situation, at least, I get words of praise for the great work taking care of dad ( these are his kids from a previous marriage that I raised since they were teens and I am only 10 years older than the oldest kiddlet) but the big BUT that is not said out loud is " thank God he has YOU to deal with all the issues..WE love our dad dearly but we have our lives and our events and activities and well we will come visit from far and wide when we can. To be fair they do live a long way away...but they don't have to be physically present when there are telephones, snail mail ( bet most of us have our LO who loves the mail and loves rereading all the letters even if they are ages old) and last but not least..skype!.....need I say more?
Today there is a gal coming from our Best Care Agency which has a group of volunteers that do a lot of things and I am hoping there will be a good match for DH so he can have a buddy to come round once a week or so and do something with him, go out to the beach, drive through the parks, etc or take him for hair cuts etc...those things would help. And there is a possibility for finding a "pal" for me too so I can vent or even just go shopping for something ( like light fixtures for the hall and kitchen) so there is a second view or suggestion...or just whatever.. They are well aware of how friends vanish...nothing like a " rent a friend" service huh? I'll post about that later..
My DH is classified as High Functioning because he can dress, shower, feed himself by himself..so I guess for now he is and that can make getting help harder....what they don't see with this high functioning person is the push to get him to change clothes, shower etc...go for walks that he needs to do.....and this pal is someone I will have take him to his primary care doc whom I do not get on with...he talks down to me and I hate that...will find another one unless the change for DH would be too upsetting for him..his d&*^ doc can send me a letter...that's another story for another time. First gotta find me a new doc since I was just moved out of the base health care and put on medicare..yuck...I liked where I was but live out of bounds now for the base..regs you know....so now I need a new doc...that doesn't ask if we own firearms ( boundary violation as far as I am concerned even tho we don't have guns...I have seen intake forms with that and " do you wear your seat belt when driving)....*shaking head *..oh well got to get on with the day.
I could not get to the well spouse site either. Maybe it is a paid site?
I do not think I expressed myself well in my initial post.
What I mean is how alone are we politically? What I have got from the nyt site is that it focused on "baby boomers" dealing with situations as they affected their parents and only one poster mentioned how it affected spouses.
Abby, I really don't have an answer for you. I do know the state I live in will pay children, and even spouses, a small amount if you meet their qualifications. My sister was paid to care for Lynn for four hours a week towards the end of his at home care. I think each state is different, and one should ask their social services about what is available to them.
I did find this site that might offer some answers for you. http://www.caring.com/articles/payment-for-family-caregiver
Abby--I Googled "Well Spouse Association" and was able to get to the site--it's not a paid site. They say part of their mission is to advocate for people in our shoes.
You have pointed out the reason Joan started this forum (specialized needs). Back then, there was no place for spouses of people with dementia to get support. The Alz Assn added their spousal forum AFTER Joan set up hers.
On my tablet I was kicked off that site over and over again. So, on my desktop I got to it; maybe it is not the same one- it is .org.
Looks interesting, but asks for $30 membership and cannot view forums until registered. I did not really seek to post; just wanted to see what the forums were like. Certainly I would at least like to view before subscribing and they don't permit that.
Thanks to you and pamsc for the information. I probably will not go for that and stick here- for obvious reasons and also stick with my digital to the nyt.
Any comments about wellspouse?
Thanks to both of you.
I am trying to remember how I found this site....so glad I did. I did not find it through the alz site- probably google or maybe dogpile.
I know someone who goes to monthly dinners of the local chapter of Well Spouse. It sounds pretty much like the purpose is socializing. He has asked me if I was interested in going, but I've felt that if I want to spend time with people who are taking care of their spouses, I'm only interested in people dealing with dementia. If I'm out for a purely social event, I'd rather that spousal illness not be an issue, period. Does that make sense?
I've often said, if I had more energy and fire, I'd get with a congress person and explain this: Everyone has their hand out these days. All kinds of tax breaks for everything under the sun. Fine, so they get their tax breaks, lord knows we're overtaxed (if you work or did) but why shouldn't those of us who gave up everything to do what we do, why should'nt we get a break? Is there a more noble effort other than serving our country. We're not poor enough to get aid and not wealthy enough to be able to afford in-home care. My taxes are now hurting. Wish we could qualify for a tax holiday, or relief as we are mopping the perverbial floor with our pain.
I have decided not to invest in that site since I feel I have the best here! I would have liked to have had the chance to look at their forums though.
Dogpile, as redbud said is a search engine. I think it replaced metacrawler as it garnishes replies from different sites and will tell you "found on yahoo"... "found on bing and google", that kind of thing.
I don't know if it is any better than google but I use it when I don't want to spend time going to all the different sites. When they say for example- "found only on bing"- I have never really checked to see if that is really true. I have found a couple of references there over time but don't know that it really made any significant difference.
When I am on my desktop I can get here, but when I am on my tablet have to go through google as I get the message "there is no app for your mobile". When I want to go to new york times I get a similar "there is no app for your android", so I just type in the www and can get in. My first post here was about how frustrated I was not being able to get a post to "post" and I think it was because I was trying to post on that device and was getting timed out.
I check this site and read on that device but reserve posting (the virtual keyboard is beyond), until H is sleeping and I can go on the desktop without interruption.
I used wellspouse for a year or two and went to one of their gatherings. I found more younger spouses with children there, which was helpful to me. Because you can't view the discussion boards without registering there is more privacy. But I faded out of that site and am still here, so I do find this site more helpful because it is more dementia-specific.
soolow..what a great point you make...and the only congress critter who might even begin to understand this is one who has a family member going through this otherwise it will fall on deaf ears..maybe we need lobbiests.
The Alzheimer's Association has an Advocacy Forum every spring where representatives from each State visit their members of Congress and lobby for money for AD research and related issues. I have attended it twice in the past, and this year, will attend the whole 3-day forum. I'm glad you all reminded me of this valid point--if there's a childcare tax deduction, why not something similar for care of a dementia patient?
Thanks MarilyninMD. We are keeping our loved ones off the street and out of harms way. Some of us have given up work, drained our retirement and in my case paid 12% penalty to use my retirement early as I"m well below 65. A tax holiday would be a humaine thing for us, the silent. It will be too late for me as my wife enters stage 7 and the system of goverment moves like a snail. Thanks again.
How alone are we? I guess a fair amount when it seems like being back in a normal world of normal things when the painters arrive to work on the fascia and stucco...someone to talk to even if it is about painting fascia and stucco...imagine not having to explain over and over what is going on and the reasons for it. Today our contractor, whom I went to for these repairs since he built our house for us, got to see just what I was talking about when I said the other day I was finished with this " make do" thing of DH. DH came from poverty..close family but there were 10 kids and no frills...so he and they learned to "make do" and for 35 years I have had to put up with "make do" and I put a stop to that when I told DH we can afford and must take care of the exterior of the house..And there area a couple of small things in the kitchen needing done and today he told the contractor...this area ( which needs some stain) is no big deal...she can make do with it...and I said NO I AM SICK OF MAKING DO AND I WANT THINGS DONE SO THIS HOUSE CAN LOOK AS NICE AS IT DID WHEN IT WAS BUILT..WE DESERVE THIS. What I didn't say was I want the required things done before it may become necessary to seek in home health care or facility care..... But getting back to this alone thing...funny that it seems so normal to talk to the painters about the work and feel like there is a normal world...somewhere at least.
I feel very Very alone! Everyone around me is going on with their life and living it. I want a life too, but I feel like I am in a pit and all I do every day is try to scratch my way out of it and watch everyone else live their life from afar.
My DIL keeps calling me. Today she called to tell me about problem granddaughter is having at school - she likes a boy but boy does not like her nor all the attention she is giving him (kindergartners). She just found out and the boys parents are threatening harassment lawsuit! Anyone, later she called me to tell me something else then said "I don't know why I called you'. I told her: cause you have no one else to talk to but me.
That is our life - we get isolated and have no one else to talk to = lonely.