Re: opinions sought
- From: "jb" <jsbolick@xxxxxxxxxxx>
- Date: Thu, 29 Dec 2005 22:45:23 -0500
my thoughts and prayers are with you,although I really don't have any
answers for you. I don't see how anyone's family can be so unthoughtful as
not to help anyone in need of help, much less that they are immediate
family. even a mans own son and daughter, unbelievable. May God keep you in
his care
Janice
"Lee and G" <leeandgee@xxxxxxxxxxxxxxxxxxx> wrote in message
news:1135877659.993849.141490@xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
| Although I have read this groups posts for quite some time, I haven't
| posted anything in a long time. Every time I try, it seems to take too
| many pages to just explain the basics. I don't think anyone has any
| solutions for me, I feel bad enough & right now can't bear another
| person telling me I'm not good enough. Yet I feel so isolated and
| feel I am drowning in an endless vortex. I really want some connections
| to the outside world.
|
| I'm the sole caregiver for my husband , a 50-year-old brilliant,
| talented, productive man with Beckers Muscular Dystrophy. He needs
| round-the-clock care and I am struggling to provide it. I have breast
| cancer (dx-2002), degenerative arthritis, and failing vision. I'm
| only 56 but I am running out of time. I'm writing to get the
| perspective, regarding our situation, of people who address issues of
| disability, care giving and family support on a daily basis.
|
| He grew up in suburban Philadelphia as I did. We lived together just
| outside Philadelphia but have been stuck in Toledo, Ohio for several
| years. Due to the a complicated set of circumstances, we lost our condo
| and moved here for what was to be a short and temporary stay.
| Unfortunately, my husband's condition is progressive and we started
| needing an expanding net of physicians and healthcare providers. Then,
| in early 2000, my husband got ill and ended up with a tracheotomy and
| using a ventilator to assist his breathing. That meant more doctors and
| more equipment. (Between the two of us, healthcare involves more than
| 12 doctors.) So we're stuck in an house unsuited to my husband's
| needs and in an urban neighborhood that is spiraling downward.
|
| We have asked both families to help us. They steadfastly refused,
| citing one excuse after another, although they are well-able to help us
| without creating any financial hardship for themselves. Now, after
| I've lost almost 30% of my sight and he has become
| ventilator-dependent, they have said "...well, MAYBE, they MIGHT help
| BUT only if we move back to their area AND it must be done without any
| help from them". We would desperately like to return to the suburban
| Philadelphia, where there would be substantially better health care for
| both of us but, because of our financial considerations and the
| complexities of our medical care needs, moving away from this area has
| become an impossibility.
|
| I have no relief, my husband gets minimal care, and we're one
| accident away from catastrophe -- we literally know no one here and I
| worry constantly that something will happen to me and there's no one
| who will check on him (in which case he'll die a horrible, slow death
| alone and unknown) . There are no facilities for a person like him here
| except nursing homes where his brilliant mind would waste while he
| receives mediocre care and eventually dies.
|
| He's not ready for that and neither am I. I'm writing you in the
| hope of getting you opinion regarding our families' refusal to help.
| The last time my husband asked for help (I needed surgery), his
| father's response was this time he wouldn't help because our asking
| for help somehow didn't consider their feelings!? He then went on to
| say "Gee's (me) father said he will help you move back." Yet,
| when I asked my father, he had no idea what my husband's father was
| talking about. It was Lee's father's responsibility, he said, and
| they couldn't help if the in-laws wouldn't?! Catch-22! (I did not
| get the surgery)
|
| His family has always refused to make any plans for him, even though
| they knew he had muscular dystrophy since he was around 5. They were
| told when he would never live past his twenties. That was wrong. He
| earned two college degrees and worked for 9 years, always remaining
| fiercely independent. He never asked for their help and they never
| offered it. He just assumed they would help when he eventually
| couldn't remain independent and would need total care. That time is
| now and they still won't help.
|
|
| Both our families live in very nice homes, (My husband's parents just
| sold their $400,000 home & downsized to a new condo in the Delaware
| County suburb of Philadelphia & mine recently moved into a brand new
| $200,000+ home in a golf course community in Montgomery County,
| suburban Philadelphia.). We live in an @500-square-foot house I bought
| at a sheriffs sale. They sit on nice nest eggs. We have one working
| electric outlet in our kitchen, no bathing facilities for my husband
| and un-insulated house where my husband has to sit bundled in an
| electric blanket, wearing a hat & using a space heater so we can pay
| our heating bill. They have all their health needs met and I've lost
| all my teeth and my husband hasn't seen a dentist in 5 years. We
| spend almost half our income on medical supplies not covered by
| insurance or Medicare.With less than $20k a year income we still
| don't qualify for any financial or other services so there isn't
| any money to pay for any help of any kind. . They exercise regularly,
| dine out, go out to new places, etc. We haven't been to a restaurant,
| movie, or mall in the 9 years we have been here and, some months, we
| struggle just to have food to eat at the end of the month. They take
| vacations, window-shop, take daytrips, and are involved in a number of
| volunteer and social activities. Yet we languish. My husband hasn't
| left the house in over a year and I can only go out when it's
| absolutely necessary.
|
| I am so overwhelmed, the house is a chaotic mess, I can't see to do
| most things, the side effects of the cancer drug (arimidex) and my
| severe degenerative arthritis can seem debilitating at times and the
| feeling of being on the verge of disaster is weighing me down
| constantly. We have tried our best to cope, adapt, plan for each
| challenge, with our families not only refusing to help but actively
| sabotaging us at every turn.
|
| Ps: they barely have ever ackowledged I have breast cancer! and
| arthritis..." I'm too young, I'm just complaining too much"
|
| What do you think? What strategy(ies) would you employ? I know no one
| to ask here and, besides, I would like to know what people think in
| other parts of the country. You have my most sincere gratitude for
| whatever you can offer.
|
| sincerely, gee (of lee & gee)
|
.
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