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35 Million

Heart and Hands

Heart and Hands

The May/June Issue 2010 of AARP Magazine reports on Gail Sheehy’s latest book Passages in Caregiving,  that on any given day in the USA 35 million people are care giving for their parents.   One third of these folks are male.

The male children usually handle the paperwork part of the process though some do it all and the female children usually handle the hands on care and many more do it all.

This is another health care system in the USA that needs attention and care itself.

We must purchase Long Term Care Insurance and pay the premiums.  Of course, the younger you sign up for this the better the premium rates, and of course the money is counted on to partially cover the bills; insurance companies need some enrollees to die earlier of car accidents and other illnesses so that they might profit.

Many people cannot get Long Term Care Insurance because of pre-existing conditions.  I am one of those people.

My Mother lived well in a retirement community with Medicare and a supplemental insurance. She worked all her life as a teacher.  “No Child Left Behind” changed her medical benefits, plus she had to enroll in Medicare Part D.   Three Thousand a month entitled her to good care and gave her opportunities to travel and eat out for some of her meals.   I helped her out with paying her bills, doctor visits, and keeping the paperwork – working.   Then she fractured her back.   Now the cost of her daily care was about $13,000 a month.  Kyphoplasty took away the pain and kept her upright, but she now could not dress herself or drive or stand.  To get enough help would have used up all her retirement funds in a couple of months.

I moved her into our house and with a few modifications was able to give her 9 months at that $3,000 monthly level.    And thank goodness for HOSPICE, which sent the nurses to her and the chaplain and a volunteer so that I could have one afternoon off a week.  My Mother had to let them know she was ready to die – a huge decision, but at 93 after a good life she was ready.   24/7 care giving with lots of help and I could no longer work because I could not afford the licensed caregivers to come in and do the day care.

In other countries, such as Canada, my cousins waited about 3 months and a new facility was built closer to them and they moved their mother into her own small apartment.  They visited her after work every day or once a week and knew that she was in great hands.  Her doctors came to her.  Specialized meals were provided.  No one was bankrupted; no one had to give up spending money to make sure their mother was well cared for or that the caregivers got a day off.   The care givers were supported and so was the family.

It is hard to imagine being in these circumstances and knowing you have to make these life and death choices.

Those 35 million care givers are too busy to work on legislation, teach about the issues, take care of themselves and they are unsupported in our current system.

It is why most men are happier being married and the vast majority hope they will die first so that their partners will care-give.   For women it is another way they lose, unless their partner leaves them very well off financially and they can pay for everything they need and all their assistance.

We need to redefine work in the USA too, because there is very little equity, seen radically in old age benefits.

This system pits family members against each other and many are only in it for the money.

Care Giver’s Syndrome is probably going to go epidemic before it gets better.

Have you got your plans in order?  Who will care- give for your parents?  How do you think about your own death?  How do you want your family involved?  Plan B?  How can you support a care-giver?

Looking forward to your responses and ideas.  I think we need to learn about what really happens in other countries – that works.

Other related reading:

How to positively cope with the passing of a loved one
Book  The Last Adventure of Life by Maria Dancing Heart
Care Givers Syndrome
Personal Health Records
Becoming Another Persons Advocate – #1

Becoming Another Persons Advocate – #2

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22 Responses to “35 Million”

  1. Hilary Says:

    Hi Patricia .. I don’t know about the States. Here in the UK when elderly if you are classified as 100% unable then the State will care for you .. so my mother with 3 strokes (after a mini fight by my sister-in-law -who does the paperwork for us) .. got my Ma classified 100%. On the other hand .. if you have alzheimers, or just senile dementia .. you cope – or your nearest and dearest do ..

    It’s knowing the legal ropes that’s difficult .. even with my Uncle we didn’t understand the Hospice’s ways and means .. two weeks to stabilise the cancer .. then ‘out’ .. well into a Home, until he could go to his own home .. there wasn’t time.

    I just consider myself lucky that my Ma is being nursed – the emotional roller coaster of her life and my daughterly care for her, as well as my own life, and my uncle & his house .. I was exhausted – if I’d had to care too .. I really don’t know. However others would have had to step in .. with my mother no-one has .. with my uncle it was too late .. I’m through the worst now, but now – I have to deal with me!!

    My future – I know what I am going to do .. around my blog, and I have plans in place which will be coming to fruition .. just later than I thought .. but I guess being strong has helped .. & I hope that life improves in the meantime, then I can make plans for the future.

    I have learnt though – it is better to ask for help in doing things that on getting older you cannot go on doing, slowly releasing the difficult challenges.

    I consider myself lucky – and have used these past few years when my parent’s generation are getting older or dying realising that one needs to plan and do in advance .. ie move to a smaller place etc, get one’s will in place, insurances if necessary .. etc etc – certainly money helps .. & letting go – keep interested, but be aware of people around you & their needs ..

    Thanks Patricia .. you had a tough time of it .. Hilary
    .-= Hilary´s last blog ..A stroll on the wild side … =-.

  2. Sara Says:


    Both of my parents died when I was pretty young, but I have watched friends deal with exactly what you’re talking about. The toll that it takes on them and their families is hard to witness.

    We spend so much on protection from terror from outside, yet we don’t address the terror of not being to help our parents or other family members deal with serious illnesses.

    Somehow, I always thought it was better in other countries, like the UK, but reading Hilary’s comment makes me aware that this is not the case.

    I do appreciate this information you’ve provided. It’s a good reminder to all of us to be prepared. Thanks:~)
    .-= Sara´s last blog ..Where You Ought to Be =-.

  3. Davina Says:

    Hi Patricia.
    My grandmother lived alone without a caregiver until she passed at 81 years of age. She was lucky in the sense that, aside from her asthma, her health wasn’t too bad. My mother passed away years ago and my father lives on the other side of the country so care-giving for my parents is a non-issue. For myself, I haven’t given this much thought yet.
    .-= Davina´s last blog ..A Poem: Mundane Monday Muse =-.

  4. Talon Says:

    It’s incredibly difficult to watch someone you love go through the throes of a terminal illness. Here in Canada (at least in Ontario) there are different levels of care provided depending on need – extended hospital stay, hospice, nursing home, assisted living – but a lot of it is over-crowded, has long waiting lists, etc. In the end, it does fall upon the family to provide the care and it is heartbreaking when the level of care isn’t what you envision for someone you love. The term ‘sandwich generation’ is apt and it’s the centre of the sandwich that quite often bears the greatest stress. There are wonderful support groups, though, and organizations that can ease the strain.
    .-= Talon´s last blog ..The Hallway (Short Story) =-.

  5. vered | blogger for hire Says:

    I wouldn’t idealize Canada or Europe. As Talon points out, no solution is perfect. My parents are in Israel where there’s more government support than in the US (but also higher income taxes), and what’s especially helpful there is that hiring a caregiver to live with you is fairly affordable.

    Regardless of where you live, buying Long Term Care Insurance at an early age is always a good idea.
    .-= vered | blogger for hire´s last blog ..Sex And The City: I Hate It Too =-.

  6. Mandy Allen Says:

    Hi Patricia, this is very interesting. Like Hilary I am in the UK and caring for elderly relatives. My great aunt died aged 94 at Christmas and she had a private income, which meant she could get no help for her care needs. I arranged private care for her and, as I had power of attorney, spent all her life savings paying for it, but she was kept well and happy in her own home, which is what she wanted. My mother has no private income, lives in a warden controlled facility after spending 5 years in hospitals and care homes (10 strokes aged 55) and she used to have daily home care help. I now meet all her care needs as the home cares were overworked and underpaid and the result is my mother was not getting anywhere near the level of care she needed. I find it hard at times, but mostly I enjoy the time we have together and she is now 72 so I have been doing it for long enough to have a routine that suits us both.

    I seriously think that all countries should have a good look at how they provide care for their elderly. I would probably be better off if I gave up my jobs and cared for my mum full time, living on benefits, but it’s not my style.

    Enjoy the journey.

    .-= Mandy Allen´s last blog ..Helping out where we can =-.

  7. Patricia Says:

    How luck you are to have your mother having good support services, and to know you need to prepare for you own life and end life. Take good care of yourself – your Uncle was a good teaching experience.
    I do not idealize any system of care, but I think we need to re-think it again and again.

    Not being eligible for Long Term care makes me a huge liability and with out being able to work for 5 years a financial burden.
    Not only the exhaustion by the deciding about how to die and when is interesting. I may have to get a divorce if I go first to not bankrupt my family.

  8. Patricia Says:

    Yes indeed we need to be prepared because Insurance Companies only lose money on the elderly even with Medicare – one needs some kind of supplemental insurance too for medical – this should be easier with the new Health Care Bill. Though I am still denied Long Term Ins. because I was born with cancer.

    No I do not think it is better other places, and I do not know about other places….I can only compare my Aunts and Uncles in Vancouver BC and Toronto’s care with what my mother received….when we knew she was dying Hospice gave her care in our home at the level she should have had all along…but that was only for 6 months before dying – available.

    Boomers need to education themselves and advocate when they are not caring for someone, because when you are too tired…and exhausted you can only think in the moment

  9. Patricia Says:

    Hopefully you have a sibling to care-give your father? In that case do not sue her as my sister did for me!

    Have a plan and keep up to date on it….who is going to care give you and handle the paperwork in your time of need?

    It is a big issue here, because Ins. companies can all of a sudden stop covering you….or suddenly charge you more….They decide when you can get coverage and when you can not…

    Just be informed.

  10. Patricia Says:

    I know it is not a perfect system and some neat ideas have come out of the struggle. There are now several neighborhood houses that have been converted to homes for aging folks – most are run by nurses….they are affordable care – some are good/ some are abusive (I do not see a lot of middle ground yet)

    Having my sister turn me over to adult protective services by making felony charges (I am glad they work well and do a good job) was devastating as I lost my counseling license and now would have to start over again to regain my status/ and my Ordination was suspended (Now reinstated)

    Squished sandwich here! :) very squished….and attempting to regroup my health and make plans to not overwhelm my children and their futures.

  11. Patricia Says:

    I don’t have lots of information about other places or even Canada. I just know that to get the level of care my mum needed I had to do it myself.
    I would not trade a minute of it – except being drawn and quartered by my sister.

    I still am unable to get long term care ins. because of my cancer history….but am thinking now I may live a longer time than expected in my case….

    We of course can not sell our house now and go smaller – until there is some market recovery….

    My partner can not even consider retirement until after age 72…and I am not having luck finding work without going back to get all new credentials…I have an ethics violation on my record…

    Just attempting to educate folks, because I think younger generations don’t want to pay taxes to support the whole community “Well I make enough money so I must be important enough to get enough health care.”

    Do just the rich get it? and the middle class not?….and what of those people who do not know how to stay healthy do they deserve to die younger because their medical is too expensive?

  12. Patricia Says:

    My best advice is don’t give up your work – you need that more than your parents need you…..just keep making sure they are not being abused.

    Financial Advisers here say “Pay yourself first” I think you need to care for yourself 1ST in every aspect of your life….just like the airlines say – cover your face with the oxygen mask before you work at helping others…..

    I am just working on educating and teaching what I know as I recover from care givers syndrome….and actually I should be extremely wealthy and have amazing benefits if wives, mothers, housekeepers and elder care works were not just slaves in the USA…we need to redefine so much here…

    You folks don’t have a constitution so you could start fresh and be ahead of the game????!! WOW what a thought :)

  13. Tony Single Says:

    This is a supremely uncomfortable issue to even think about let alone go through. I don’t envy anyone who has had to survive the nightmare of their loved ones going through ill health AND having to barely scrape by with little to no support from a government that’s supposed to be helping them.

    I think it’s such a shame that our tax dollars go towards the relatively smooth running of our society (although I guess that’s debatable) and when we need that society to really back us up when times are tough… nothing. It’s a worrying and dispiriting thing.

  14. Patricia Says:

    It is a hard subject but crucial….Greed has been the controlling force in many lives recently and as far as INS and Government go if you are not making money for them they are not interested in you – people thought that went away with the recent vote – nope it still needs citizen knowledge and intelligent involvement otherwise it just transforms underground.

    What happens to real people in a culture is where the focus should be…

  15. J.D. Meier Says:

    It’s interesting trying to figure out how the business of life can support the “golden” years and beyond. It seems to me it’s the type of thing you need to really structure and build over a life time … yet so many plans can go astray, and so many changes can undermine the foundation of the best of plans.
    .-= J.D. Meier´s last blog ..Lessons Learned from John Maxwell =-.

  16. Patricia Says:

    And you can do everything right and it still does not work out according to plan or action….so right; so right!

  17. Mama Zen Says:

    My state just slashed funding for programs like Meals on Wheels that helped elderly people remain at home. Many will be left with no choice but to go to a nursing home which is much, much more expensive. How does this make sense?
    .-= Mama Zen´s last blog ..Review: You’re Not The Boss Of Me =-.

  18. suzen Says:

    Hi Patricia! Hubs and I lost our parents in the 80’s and 90’s so we have not had this issue to deal with but boy oh boy I have friends who are in care giving situations and it is certainly hard on them all. We need a much better health care system!

  19. Patricia Says:

    Mama Zen,
    I found that so much of the thinking makes no sense at all, because they are using the cattle feedlot method of solution – not respecting the human rights and needs of people.

    Rather than feed cattle grass for 6 days to get rid of ecoli now they add ammonia processing to the meat….catch my drift? They make it worse.

  20. Patricia Says:


  21. Tess The Bold Life Says:

    My sisters take care of my mom and she’s still in a care home. Even there a family member has to keep up on things daily.

    We bought long term care insurance about 5 years ago. I’m not sure it’s the answer even though we bought it so young.

    My plan is to continue to keep the best care of myself as I can and then quit eating when I don’t believe life is worth living anymore.
    That may seem crazy to others but hey I love being on your blog and being honest.

    Mean while I wish you “well!”
    .-= Tess The Bold Life´s last blog ..The Bold Life: Loving Choices Change Lives =-.

  22. Patricia Says:

    Yes Tess, even in a home it is a lot of work. My Mother had nursing care at a center after her back surgery repair….she left there so ill, I had to go in daily to assist her – and it was the best center.

    I am not eligible for Long Term Ins. so I just think I will need to stay as healthy as possible and then just decide when to give it all up….I do not wish to bankrupt my family in any way.