Re: opinions wanted
- From: wallen@xxxxxxxxxxxx (fatcat)
- Date: Fri, 30 Dec 2005 02:59:33 GMT
You certainly have my sympathy too. You and your husband have a hard
row to hoe. Why do you think you don't qualify for some kind of
assistance?
Here are some suggestions:
Contact the Muscular Dystrophy Association and tell them exactly what
you have written to us and ask for help.
Contact your local newspaper or TV station to see if they can help you
in your situation. Some TV stations have help lines and try to help
people solve their problems. With that exposure, a good Samaritan
might surface to help you move back to Philadelphia.
Write your preferred hospital in Philadelphia and ask their medical
help and that you desire to return to that city.
Ask for further contacts of anyone you speak to.
Seek counselling to help you and your husband deal with the isolation
and your family's refusal to help.
Best wishes to you and your husband and hope the coming year will be a
happier one for you both.
Mary Ann
"Lee and G" <leeandgee@xxxxxxxxxxxxxxxxxxx> wrote:
>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, degenerative arthritis, and failing vision. I'm almost 60 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 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.
>
>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)
>
.
- Follow-Ups:
- Re: opinions wanted
- From: Starvin'Marv
- Re: opinions wanted
- References:
- opinions wanted
- From: Lee and G
- opinions wanted
- Prev by Date: Re: Cleaning up the group
- Next by Date: Re: New Policies Needed. Soon !!
- Previous by thread: opinions wanted
- Next by thread: Re: opinions wanted
- Index(es):
Relevant Pages
|
