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Old 11-17-2008, 03:44 PM   #1
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Caregivers - What are you telling your own children to do?

I've been on the boards now for over six years, ever since DH was diagnosed. I've cried for the newly diagnosed, sympathized with caregivers dealing with huge problems, and have said prayers for loved ones who have died.

I'm still hoping to keep DH home until our youngest graduates high school. As a family, we decided that incontinence would be the signal that it was time for a nursing home.

Over and over again through the years I've read postings from families that are struggling with their loved one's care, trying to keep that family member out of a nursing home. (Yes, I understand the financial issues very well--I will be nearly destitute when this is over, and DH had no life insurance.) Many caregivers report guilt over the decision to put their loved one in a nursing home. Many of them also report, however, that it turned out to be absolutely the best thing for their loved one (Martha's story, for example, has helped many posters). Ultimately, we know that most AD patients will be in a hospice, hospital or a nursing home by the end of the disease.

After all this writing, my question is....what do you want for yourself? What have you told your own kids to do for you now, when you're healthy? What do your own healthy parents want, after seeing their spouse become ill? Have you told your family that you want to stay home as long as possible? Or if you are diagnosed, will you quickly move into assisted living and make arrangements for a nursing home? Or will you leave it to your kids to figure out what to do (that infamous head-in-the-sand approach, which so many caregivers ultimately have to face).

I'm wondering if an insistence on hanging onto the family home as the paint peels, the clutter rises, and the yard gets overgrown, is based on stubbornness or a sense of indestructability. I know that my own parents (neither of whom had AD) never considered moving until their health problems were so overwhelming that the move was traumatic for everyone...and in the meantime, their house really fell into disrepair . I don't know if their vision was impaired by memories and age, but they just didn't see how run-down their home had gotten. When combined with AD, living situations for the elderly seems to become a huge, huge problem for many families.

I've told my kids not to be sentimental. Help me move into something manageable for whatever stage of life I'm in. I'd prefer that my kids visit me often than be responsible themselves for my daily care. I just hope I don't lose this perspective if my brain is someday fogged with AD. I'd hate for my kids to go through this again with me...and I guess I'd rather pack up or throw away my own stuff, instead of having my kids go through my life's collection of belongings someday.

 
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Old 11-17-2008, 05:48 PM   #2
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Re: Caregivers - What are you telling your own children to do?

This is a great theme!

My three adult kids have written instructions on what to do with me if I get dementia. Do not take me to live in your house. Do not move in with me. Do not feel guilty if you put me in some kind of institution. Use up my money to pay for it, and then try to get me on Medicaid when it is all gone. They know I do not have a lot and they do not expect any inheritance.

They have all the necessary medical and financial directives. They know I love them and would never make them go through what I went through with my Mom.

Of course I hope to live long and remain mentally well. But if that is not meant to be, I refuse to be a burden to anyone. They will know when it's time for me, just as I knew it was time for my Mom ... (about a year too late, actually )

But I expect the new drug to be out before any of this happens!

Love,

Martha

 
Old 11-17-2008, 07:16 PM   #3
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Re: Caregivers - What are you telling your own children to do?

My ancient house is already a wreck. I love it here and usually threaten to remain until my demented self goes out in some sort of blazing Viking funeral pyre while drinking and trying to cook. But seriously, I've told my kids that while I would prefer to remain at home, and that doing so might mean they could keep the farm, what I want is for them to decide what they can do. Keep me home if you can, but if you're neglecting, or burdening, your wife and my grandchildren in order to care for me, place me elsewhere. Your choice, with no guilt. I love them too much to cause trouble in their lives.

 
Old 11-18-2008, 12:25 AM   #4
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Re: Caregivers - What are you telling your own children to do?

Good idea Beginning. I watched my Mom and Dad cling to their house like a sinking ship. It's still sitting unoccuplied.... after 14 months. It so needs a family to love it. One day soon we will have to do something because of the capital gains ramifications if we wait longer than 2 years to sell it.

I would rather go quietly in my sleep with my mind and my body but if that is not to be the case... my daughter knows that I am not to become a burden to her. She is not to move back here and I am not to move in with her. She needs to do what is necessary to make sure I am cared for without placing undue burden on her life. She will visit and be sure I am cared for because that is who she is. She does the same for her grand parents. She has watched my struggle with my parents closely and has learned

Then when I am gone my ashes are to be left on the beach in the midst of a celebration of life. The life I had and the life she will continue to have.

Love, deb

 
Old 11-18-2008, 07:42 AM   #5
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Re: Caregivers - What are you telling your own children to do?

Thanks for all the thoughts put here, they truly make me think of things. I always joked that when I felt my time was coming and I was truly forgetting things, I'd just hored up whatever medication I have and take it all, going to sleep in a hotel room somewhere, anywhere than to put my kids through what my sister is going through.

My daughter jokes and says that my son will be the one to take care of me because he's my favorite . . . I see that my daughter is not able to (like me) provide that hands-on care and I certainly wouldn't want to burden my kids.

People always said, watch what you do in front of your kids because it may come back to haunt. They see that I am not able to provide the hands-on care. They also know why (bad, bad childhood history with this parent), and I sometimes wonder if that is why my daughter said what she did.

But now seeing what Sister is going through, I can't put my loved ones in that position. So either I take a nice cruise and jump overboard sometime during it or whatever, (only joking folks) my kids know beause I've just told them (during one of Sister's bad days) that they have my utmost blessing to do whatever they have to do.

I just hope I outlive the dreaded disease my mother has. I keep asking the doctor if its heredity and she said 'yes, its found to be'. I choosing not to think about it right now.

 
Old 11-18-2008, 07:45 AM   #6
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Re: Caregivers - What are you telling your own children to do?

and one more thing. for the U.S. based people. There's such a thing as being insurance poor. Long-term care insurance is expensive and I feel that when the time comes to cash in on it, some loop hole will be found and they won't pay anyway -- or the company goes out of business and you're in a pickle.

So while my BF has long-term care insurance. I don't have a pot to (you kow what in) or a window to throw it out of . . . I can't afford long-term care insurance. Of this, I am scared

But since I just screamed at the health-care provider I have for them not paying a recent bill and made 4 phones calls all around to get it resolved, I sitting here saying "why pay money I don't have for something I may not use"

Thanks

 
Old 11-18-2008, 12:40 PM   #7
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Re: Caregivers - What are you telling your own children to do?

I hope I don't get thown off the boards for saying this, but since everyone is sharing their various plans for the possibility of AD care for their future, here goes. I do not have children, do have mom with AD in asst-living facility. She is 83 & is in stage 6-7 so this may go on quite a while. I have written instructions for my hubby & he knows my wishes. Since I have other health issues, hopefully I won't make it to the AD stage (most women in my mom's family have shown signs in mid-late 70's). I am in my late 40's and if diagnosed, we will sell everything, move to the Netherlands & after 18 months take advantage of the fact they offer the option of human euthanasia. I know this sounds extreme, but I do not want to be a burden to my hubby, who is all I have left. I have no brothers or sisters, my dad is gone and I have 1 cousin who I barely know. I want to be me, and when I am no longer me, I want to pass on. I hope this post does not get me thrown out, please do not mistake this for me being suicidal- I am not, it is just my wish to spare my hubby & friends the pain of watching me, as I am now watching my mom, as I watched my grandmother, my great aunt, my aunt, and my father-in-law. I know I don't post here often, but I believe sharing my point of view was important today. If I had kids, I would probably feel slightly different, i.e.; put me in a home & visit me, etc. I read this board daily & have learned so much from all of you, and I want you to know I have learned many, many coping skills from reading all your posts. AD is a sad way for a life to end, but this is my choice and mine alone. My hubby will support my decision because he has seen all the people from my family die, and his own father, so he knows how awful the end is. Good luck to each of you as you plan for how you want your family to handle things if you get the AD. I know it is heridetary, but not everyone with family members with AD get it, so please stay hopeful, I know I try to.
Jen
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Old 11-18-2008, 01:19 PM   #8
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Re: Caregivers - What are you telling your own children to do?

I completely respect your opinion Jen. Each of us has to deal with this possibility, unless we are in total denial, and it appears that your decision has been well thought out by you and your husband. Each of us has to do what is right for us in our circumstances. You are right, if it was not for my daughter I could make the same decision you have. Family, especially children, make a big difference in what you wish for.

It is good to see you post. It is so difficult to watch the progression of this diease. I do get solace in typing, other in reading. I'm just happy this platform is here for all of us.

Most of all I am wishes that none of us go down this slipper slope of a disease and if we do there is a cure discovered before. I won't give up hope.

Love, deb

PS.... caring, Mom has LTC insurance. Yes, the payments were expensive but we had no difficulty getting Mom approved for benefits and are very thankful for the monthly checks!!

 
Old 11-18-2008, 04:14 PM   #9
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Re: Caregivers - What are you telling your own children to do?

Jencat - I understand and agree completely! DH said something similar when he was first diagnosed. I respected his feelings at the time and he never acted on them, but this is obviously a highly charged issue. Oregon was debating its referendum on right to die issues when DH was diagnosed, and I was very interested in the debate. One of the things that I learned was that they deemed AD patients as being incompetent to make a right to die decision! Perhaps as we have the AD epidemic that everyone is predicting for the Baby Boomers, our society will become more enlightened when increasing numbers of families are affected, and the disease become an economic disaster for Medicare.

Last edited by Beginning; 11-18-2008 at 04:17 PM.

 
Old 11-18-2008, 04:25 PM   #10
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Re: Caregivers - What are you telling your own children to do?

oh my goodness, my husband and i talk a lot about this. we have never formally done anything about it. watching my mother deterorate is horrible. i dont want my ch 3 children nor my husband to ever have to go through this. legally, what can we do in the united states?

 
Old 11-18-2008, 04:59 PM   #11
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Re: Caregivers - What are you telling your own children to do?

I understand both the government approved end of life option and the private ''get a whole box of pills" option. I fully understand. But for me it is not an option because of my religious faith. However, I do not think the ruler of the universe would condemn anyone for an act of desperation.

Love,

Martha

 
Old 11-18-2008, 07:28 PM   #12
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Re: Caregivers - What are you telling your own children to do?

Bless your hearts ladies for tackling the elephant in the room. My husband and I have also discussed this. I knew an older couple who decided to "call it a day" when she could no longer care for him. My stepfather chose the gun instead of death by throat cancer. I don't know what I will choose, but I cannot believe a merciful God will judge harshly if one requires an end to pain and fear. He knows how frail we are, and only requires that we earnestly seek his will. Not moral relativity, but an acknowledgement of our uniqueness. Bless you jencat, and I sincerely hope I've not offended either.
Q

 
Old 11-19-2008, 09:13 AM   #13
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Re: Caregivers - What are you telling your own children to do?

I share Martha's view, but I don't think any of us on here are offended by others' opinions. We've all been there, and whether we agree or not, we do understand! I will tell my family that once I'm difficult to have around, I need to be placed somewhere. As long as they can stand me, though, I hope they'll let me sit in their home and watch the goings on.

Emily

 
Old 11-19-2008, 06:25 PM   #14
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Re: Caregivers - What are you telling your own children to do?

Beginning, I too agree that with the huge economic impost that the Boomers (I'm one of them) will place on society there will be a rethink on what respect we accord to those wishing to choose assisted suicide and have made available the appropriate drugs.. There are some Australians who are so desperate that they have travelled to Mexico for the necessary drugs inorder to to end their lives on their terms.
I think that this is such a difficult area involving religion and ethics that governments maintain the status quo unless there are enough people agitating for change . We had one state govt. here in Australia that legalised assisted suicide a few years back and a number people availed themselves of this and seemingly passed away peacefully . However the Federal govt. stepped in and after a few moths the legislation was rescinded.
Today, Australians overwhelmingly support voluntary euthanasia so I guess it will be just a matter of time I guess next 10- yrs before it becomes legal once more.
It all takes time and has to be thought through carefully. My children have said to me that they hope that I do not have to go through what granma is going through.
Incontinence , pain and confusion through loss of memory is not what I choose for myself . So hopefully I will be able to recognise when 'it is time' and take my leave as peacefully as possible.
With love and respect for you all,
M

 
Old 11-20-2008, 08:22 AM   #15
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Re: Caregivers - What are you telling your own children to do?

Does anyone remember the Gray Panthers from the 1960s? Perhaps it's time for the Boomers to become activists again, demanding the right to have personal options when facing a terminal disease. I sure know how I'd vote if given a referendum!

 
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