Re: opinions sought
- From: "Jo Firey" <JAfirey@xxxxxxxxxxx>
- Date: Thu, 29 Dec 2005 10:44:34 -0800
This is only my own opinion, but if your families are unwilling to help,
then I think you need to proceed as if they did not exist. You don't really
have the extra energy to devote to them if they will not be a part of your
lives.
I only know what you have written here so I do not really understand you
situation, but it does sound as if your husband might be better off in a
nursing home than he is now. It would relieve you of some of the care
responsibility. You could still see him every day and be sure his life is
at least as stimulating as it is now.
I do not know if you are involved with a church or if you ever have been.
Many of them have telephone support groups that call each other once a day
to make sure things are ok. I believe many senior centers would also have
the same sort of arrangement.
Are you both on social security disability? And have you looked into what
government assistance is available for each of you? Your primary care
doctor should be able to direct you to someone who can make sure you get the
help you need and are entitled to.
As with most of our problems in life, we have to accept the things we cannot
change, stop focusing on them and shift our focus to what we can do and what
we do have.
Prayers on the way for strength and guidance.
Jo
"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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- From: Lee and G
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