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Caregiverzone.com is an example of all those new web sites geared towards senior issues. It's trying to paint a picture of the political climate for seniors by printing stories on the repeal of the social security earnings limits and on elder people rejoining the work force, and on legislation to lower drug prescription costs.... CNN interviewed the founder, Stacey Matzkevich.... and it's all to assist this generation that's taking care of one and two parents while moving towards retirement age. The first wave will take early retirement in 2008. Everybody's saying the same thing. People are living longer, people are having their kids later, and the generation in the
middle is ending up taking care of everybody.

I'm a part of this sandwich generation, and with all the good news, and the new legislation, and the increased life spans, I'm still amazed at the difficulty of being on the front lines day to day trying to take care of parents while holding down jobs, raising kids, paying on mortgages. I'm not
whining, but is this the first time in history that one generation has had to be the primary caregiver for the generation before it and the generation behind it? Or does it just seem that way because it's happening to everybody I know? Does anybody have any predictions about what "families" will look like in twenty years? Are we headed back towards homes full of extended
family members?

Interested in other views,
James Simon
Original Post

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Hi James,
Weclome and thank you for your response. Yes the Cargiverzone is working to align itself with major legislative issues, but I believe until all the major sites, organizations etc., unite, the voice of the caregiver will not have the strength it needs to break through the pockets of those who control legislation. Also, until many are hit with the caregiving situation or even in need of a caregiver, it is going to take a lot more unification. Caregivers themselves must begin to take action writing their congress people etc.

It is an established fact by the Rosalyn Carter institute that one out of every four people in the United States will be a caregiver, a carereceiver or both in their life time. This is the future for the baby boomer's and those that follows.

Our parents' generation had both parents working...in their cases they were forced to place their parents into facilities or nursing homes. There was a time before these facilities cropped up where loved ones were taken care of in the home...but while medicine and technology are keeping people alive much longer, a great deal of the time the quality of life can be dimminished...and the lives goes through a much longer deterioration stage before their passing.

Advocacy is going to play an important role with individual family caregivers as well as the web sites and the organizations that support these changes.

In addition to being a caregiver for a parent, as you and millions of others are finding out, it is even more of a challenge to care for a family, with growing children who need attention, love and care. And there are many adult children who must care for a child as well...not to mention the illnesses and breakdowns that caregivers themselves are dealing with from the stresses of caring on an emotional, physical and mental level.

The need is so great...when our government is helping so many in so many other countries, when will they take heed and support the family caregivers who without any training are thrown into their roles at the instance of a diagnosis...

As the vision for Empowering Caregivers grows and investments and funds are secured, we hope to play an active role in helping to institute legislation for respite, financial renumeration and much more.

Warmest Wishes,
Gail
Hi James,

I am not in the Baby Boomers Generation. I was born 4 years before but still in a "Sandwich" position. My husband and I have taken in my mother-in-law who is very ill and the doc. won't let her live alone anylonger plus I am also caring for 2 disabled young adult children. (Really feel "SQUASHED" in.)

We have to remember that all things changed with World War II. Before then we had what is called extended families. Adult children did not leave home as much, there was always a family member (and their family) living with the parents. As the parents got older and were not working they cared for the grandchildren so their adult children could work. When the older people got sick they were cared for by the ones they were living with. This had gone on for generations and was the natural order in family living not just here but all over the world. It is still that way in many countries.

We are all trying to do our best to set things up for your generation by preparing the way for the Caregivers. It will come. It can not be ignored forever. Caregivers need help. We need to band together. Write to our Representatives and Senators and tell them our concerns.

I have a part time position in a non-profit agency and my title is: Community Resource Early Intervention Specialist. My job is to make myself available to the Elderly who are frail, ill, etc. in order to help them get the services needed so they can stay in their homes and live independantly as long as possible. I also reach out to cargivers in like manner to help them. We are the only Senior Center in our State to provide this type of service. It is needed in all communities.

Unless we can get the caregivers to come together in unison and rally around the bills to help them, then government will continue to ignore us. This is also one of my goals....getting them involved.

Blessings
Joan
Dear Gail,

You have a very enlightening site for caregivers. And I'm especially intrigued by the postings in the "sandwich generation" category. I'm currently writing a book on how caregivers experiencing the sandwich situation deal with stress and endure day after day, year after year. I'm working closely with Caregiverzone.com on this project also.

So many books out on the market have neglected to broadcast the uncensored, honest thoughts and feelings of the caregivers themselves. You mentioned that it will take more and more people to experience being a caregiver or needing a caregiver before legislation can be affected. I agree, but I'm learning that it will also take mass experience to enlighten people to the tough day-to-day stresses and pressures caregivers go through at all. Until more people are doing it, the majority of people will not know what really goes on.

What are your thoughts on this?

I'm not a caregiver myself, but I am a researcher who has specialized in topics of inner strength and triumph over adversity since 1995. I'm learning all I can and finding so many wonderful people sharing their advice and experience.

I wish you much health and happiness.

Warmly,
Christian Fisher
journeyoflife@hotmail.com
Welcome Christian,

Well I must apologize for the delay in my responding to your post. The months passed so quickly; it was as if it was in a blink of an eye. I hate to let go of the correspondence on my end...however, the site was down for a bit and it was important for me to get everything up and in order once again. Caregiverzone is a good site...Unfortunately they have a team to rely on...I am just one doing the work of ten, writing proposals, speaking at the conference, maintaining the site etc. Hopefully, a team will slowly be put together at the onset of the news year...I am praying...

I commend you on your dedication to write a book on how caregivers experiencing the sandwich situation deal with stress and endure day after day, year after year.

The need to have the needs and experiences of caregivers expressed is of great importance. It is through the sharing that other caregivers realize they are not alone. It offers them strength and courage to meet the personal challenges they face in their own role.

I too believe, until more and more people experience what caregiving is all about, those who haven't cannot begin to comprehend it.

I think of wealthy families who have the monies to get offline support, to hire aids...their experiences are widely different than the caregiver who is strapped to the role 24/7.

I would love to offer more assistance in anyway that I can...please feel free to contact me.

Richest blessings in all you are doing.

Warmest wishes,
Gail
I am now caring for my 21 year old disabled daughter. She is "total care" and had been in nursing homes and hospitals since she was injured 7 years ago. I recently brought her home under a Medicaid waiver program in order for her to be able to receive therapy. She could not receive therapy any other way--all therapy stops under Medicaid once a person reaches 21. I am interested in having a Medicaid reform campaign.

I put a post in the section on caring for adult children concerning the run around I get from the agencies and programs that are supposed to help the disabled. I advocate in person and by phone at least 6 or 8 hours every day. Sometimes I write letters to advocate on weekends I also am primary caretaker, so am alone in caring for Elizabeth from 7 p.m. until 7 a.m. during the week, and have an attendant for 5 hours on Saturday. I also have custody of my 9 year old grandson. I haven't the time to get more than 10 hours or so into a job each week.

Writing your elected officials in the government, (local, state, and national) will work. I wrote a letter to our governor and sent copies to every single elected official, state agency, and advocacy group that I could think of. Even Pres. Clinton got a copy. Contrary to my belief that the letter would be ignored, I have had a tremendous response to it. My phone hasn't stopped ringing. The calls are from people in authority who CAN and ARE doing something to help my daughter and to help me in this very hectic and scary transition period.

I had thought one voice would not make a difference, but it did. Imagine what a group could do!

Sincerely,

Marilyn A
Congratulations Marilyn,

I just responded to your post in the other area..suggesting you write to the officials..and now I am reading this post...yes, yes, yes... congratulations...I am so pleased you are getting the support ...I am going to post this in the newsletter for others to see...it is important...some times it is a lot of extra work...thank god...it pays off in the long run...keep up all your wonderful work...
richest blessings
Gail
A sandwich caregiver...I would like to tell you about a Dagwood sandwich!

My husband and I together, have three children...Biologically, his daughter..and my two sons....All small when we married...and together, we raised them.

Our daughter and her family are the ones I would like to tell you about...
Our daughter has Chronic Fatigue Syndrome,
Our son-in-law...her husband, has a great number of difficulties due to exposure to agent orange in Vietnam...Our grandson,( their son ) has ceberal palsy from birth and now our daughter's biological mother is ill ..emphazyma and coronary disease is living with them because she can no longer manage on her own. Inspite of their own problems, our daughter and son-in-law are trying to hold it all together!
They don't live close enough for me to see them, because of my husband's condition,..so I can't even offer to try to lend a hand.
They are handling it though...amazing family!

They too, could use some of that help...She fights like a tiger for those gov't benefits
that are available...and to get others put into place!

I let her know about this site...perhaps we'll get some of her input too.

In the mean time they could use our prayers,too.

God bless and keep you all...Pat
Hi everyone,

I'm new here. I am 38, married with one 5 yr. old daughter. I care for my mother who lives in a basement apartment in my small house. She is 67 and still fairly independent (she feeds/bathes/dresses herself). My mother moved in with us the year we got married (10 years ago) - so as you can imagine, living with my mother for my entire married life has put its stresses on the marriage.

My biggest problem is that my mother now requires a LOT of my time (mostly for doctor's visits, organizing her schedule, dealing with her never-ending neuroses, etc...) My husband and I both work full time (hubby works two full time jobs and is going to school for his masters) and I have a 5yr. old to take care of. Every time I have to take my mom to the doctor (at least 5 doctors a month - not including any extra tests, physical therapy, etc.) I have to take at least 2 hours off of work. I end up practically NEVER taking a lunch hour to make up for all the time I take off for this. I can't use up my sick/personal days because I need them for my daughter if she has to stay home due to illness or when the school has half days, etc.

Lately I've been feeling very angry towards her and "put out". It isn't her fault, I know and I try to stay focused on how difficult this is for HER, especially since she can't drive anymore so she doesn't go anywhere and that is really awful for her.

I'm an only child and have little support. My cousin does help out when he can, but sometimes it just isn't enough.

I am now faced with having to get mom to physical therapy 3 days a week. There is just no way I can do this!! No way. I applied for a handicap bus service and now they tell me I have to bring her in for a 15 minute verbal interview. I would have to take a half a day off from work to do this - I just can't do that!! And of course, they don't have appointments on the days my cousin is off from work so I can't ask him to take her (he absolutely would have).

AAAAHHH - I'm so stressed!! I just can't believe there isn't more help out there available. Geez.

Sorry for rambling... I'm very happy to have found a place to "vent". I have no one to talk to about this.

Thank you all for "listening".
Hello Lovesmommy and welcome.

You indeed have a challenging situation. You say that you cannot bring your mother in for the interview to get the disabled transportation. Yet you are taking time off regularly to get her to these appointments. I would imagine it would serve you to take this time and get her the transportation which would free you up in the future from all her appointments that require transportation. It's all how you look at it. Spending a little more time once to get so much more time to yourself for work is a blessing.

If you tell us where you live, we might be able to come up with more solutions. There are senior centers, church organizations etc with volunteers who might also give some time to your mother. In major cities, there is also access a ride... but it requires some time and effort to research the options. Don't give up... give us as much info as you can and hopefully we can suggest other avenues for you to research.

Richest blessings
Gail
Thank you for the welcome and the reply :-)

I decided to take yet another long lunch hour and get the interview overwith. I do see your point about spending a little more time to help free up time, however, my mom requires me (or another family member) to be with her at her doctor's appointments because she gets too confused and emotional and doesn't really pay attention to what the doctors say so someone needs to be there to speak with the doctor to answer questions and get information.

I needed the bus service to take her to Physical Therapy, which is the one place I do not need to accompany her to.

YOu are right though - so I have made the appointment and hopefully things will work out well with this service.

I have also been looking into volunteer services so we'll see how that goes.

Thanks for listening and for your words of wisdom, it is much appreciated :-)
Hi Loveysmommy,

Glad to hear you followed through.. I understand that you are still needed to take her to the doctor appointments.. If you let me know where you are located, I might be able to suggest some volunteer assistance.. unless you are living so rurally that there really isn't much available at this time.

Please keep us posted...hope to see you in the chats.

warmest wishes

Gail

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