opinions sought

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)

.

Relevant Pages

  • Re: opinions sought
    ... | I'm the sole caregiver for my husband, a 50-year-old brilliant, ... | round-the-clock care and I am struggling to provide it. ... | He grew up in suburban Philadelphia as I did. ... So we're stuck in an house unsuited to my husband's ...
    (alt.support.arthritis)
  • Re: opinions sought
    ... > I'm the sole caregiver for my husband, a 50-year-old brilliant, ... care giving and family support on a daily basis. ... > He grew up in suburban Philadelphia as I did. ... So we're stuck in an house unsuited to my husband's ...
    (alt.support.arthritis)
  • opinions wanted
    ... I'm the sole caregiver for my husband, a 50+-year-old brilliant, ... round-the-clock care and I am struggling to provide it. ... He grew up in suburban Philadelphia as I did. ... So we're stuck in an house unsuited to my husband's ...
    (soc.senior.issues)
  • Re: opinions sought
    ... Your husband is a lucky man to have you. ... care giving and family support on a daily basis. ... > He grew up in suburban Philadelphia as I did. ... So we're stuck in an house unsuited to my husband's ...
    (alt.support.arthritis)
  • Re: opinions sought
    ... This is only my own opinion, but if your families are unwilling to help, ... It would relieve you of some of the care ... > I'm the sole caregiver for my husband, a 50-year-old brilliant, ... So we're stuck in an house unsuited to my husband's ...
    (alt.support.arthritis)