Wife with MS
FG
I am the caregiver for my wife of 18 years who has been diagnosed with
chronic progressive multiple sclerosis for 9 of those years. Two years ago I
had to start working out of the home because her condition had deteriorated
to the point where she could no longer transfer herself. We live in Texas.
Her condition has continued to decline and with it mine has also. She is not
yet confined to bed but can barely feed herself. I am 43 years old and feel
much, much older. We have many assistive devices provided by my insurance
company but the one thing needed the most they will not provide, namely in
home health care. We have used the $15 an hour agencies and tried to find
individual help and none have worked out. Quite frankly we can't afford it
anyway.
She is on a waiting list for state aid but the likelihood of that actually
materializing seems slim. She has five grown children and only one is of any
real help and she is in college and soon will be moving out of the house to
go to another school. I adopted three of those children and raised them as
my own from the age of three.
I have been seeing mental health professionals for depression and anger
issues since shortly after my wife was diagnosed. I have been on many, many
different types of depression medication and at best they only keep the
"dark thoughts" at bay. I am a Christian and have looked there and in
philosophy for relief and have found little help.
In my present muddled state and find that I can no longer maintain the
house, my wife, myself, and my job within reasonable parameters. A recent
break given to me by my wife's two sisters who live on the other side of the
country has brought this into clear focus. Away from my current situation I
am able to think clearly, feel well, and am generally my old self. When I
returned home I immediately was immersed in the fog of responsibilities and
unrelenting requirements of caring for my wife.
I love my wife. I have proven that love. However, through the aid of my
current therapist, I have been able to finally admit to myself that I am
hanging on out a sense of duty and responsibility that although beneficial
for my wife is extinguishing what is left of me. I feel I am nothing more
than her personal aid at this point. Sex is extremely difficult if not
impossible and fruitless for us both. We are companions at best.
The most difficult thing to deal with is that there is no light at the end
of the tunnel. There will be no cure for her. She has some of the best
doctors in the country and they cannot even abate her pain much less help
her symptoms any longer. She could live a normal lifetime. I could stand by
her and pour the rest of my life out. I don't know that I really want to or
should do that. I want to escape MS as much as she does. The only difference
is I could.
My only way of coping at the present moment is thinking of things as "a year
away". I am looking at things as being a year away from some major change
that will bring some relief to this situation. I will either have things in
a state where I can leave her and feel she is being taken care of as best
she can be or one of us will be freed from this situation by providence. I
still pray for my wife's healing, but I have also prayed many times that God
would take one of us, I don't care which one, just so some relief could be
had.
I apologize for the length of this post. I don't know why I've even posted
it really. I realize many of you are in much worse situations and are
perhaps coping much better with much less. My hat is off to you.
Well, I must get on with the routine now.
God bless you all. I pray that He strengthens you and gives you hope. And
may His peace rest upon you like a warm blanket and may your spirits be
renewed each morning.
Regards,
FG
Greg
of us are more fortunate. I'm 44 and have cared for my wife with a brain
injury for the past 4 years. I need to work out of the house for my
well-being (and income) so I've used the resources of our church, a senior
center, newspaper ads, and neighbors to locate independent caregivers to
come into our home 5 days a week. I currently have a long commute and am
out of the house 11 hours a day, so I use two caregivers that split the
week.
I don't have any easy answers. I know that if I tried to do it all by
myself I'd be in sorry shape. After a weekend of caregiving, I enjoy Monday
mornings in the office. If I were in your position, I'd start by finding
someone who could provide care 1-2 days a week so I could work in the
office.
Belief in the Lord has helped strengthen my powers of love, duty, and
responsibility. If I can't take care of myself, I do a lousy job of taking
care of my wife. I take two short vacations a year, have my children from a
previous marriage (teens and grown) visit about 2 weekends a month, and am
trying to find a hobby I can do out of the house on a weekly basis.
Good luck. We'll be praying for you both.
- Greg
Liz
What does your wife have to say about your feelings? Is she sympathetic to
your position? How does she feel about permanent placement, where, I'm
sure, you would visit frequently?
I cared for both my parents until they went into a nursing home. Now I
handle their laundry and errands and keeping up with their finances (what is
left of them after Medicaid, that is :). I can understand your anger and
frustration and sadness. I'm sorry for both of you that your situation
seems so dismal. You must be so thankful to your sisters in law!
Possibly you do need to discuss placement. The death of either one of you
is not the answer!
Welcome,
Liz
FG
"Liz" <kdkdc...@home.com> wrote in message
news:m4727.179464$DG1.29...@news1.rdc1.mi.home.com...
> Hi FG,
>
> What does your wife have to say about your feelings? Is she sympathetic
to
> your position?
Yes, she is very understanding. She told me that she has often thought how
unfair the situation is for me. We are very open about our feelings.
> How does she feel about permanent placement, where, I'm
> sure, you would visit frequently?
The thought of a nursing home has been horrifiying to her since she was
first diagnosed. Everyone in the family doesn't want her to go into a
nursing home. I have been told by social workers that the state would prefer
that people be taken care of at home. We feel the same way, which of course
is what I have been doing.
As far as visiting frequently, my wish is to leave the state. We would
eventually divorce to free me to develop other relationships. I simply don't
know Liz. I can't see that far down the road.
> You must be so thankful to your sisters in law!
Yes I am. I wish they were closer.
> Possibly you do need to discuss placement.
This is a large hurtle. I want her and the family to make this decision.
>The death of either one of you is not the answer!
Of course you are right. It is however, a prayer of desperation.
Thank you for your kind words.
Regards,
FG
kcaj
walker but I shake in the lower half of my body and use the bathroom
all the time. I have a hard time bending my legs. I go to the V.A. in
Atlanta but they haven't given a name to what I have but it is similar
to polio. I don't like quack theropy but i have known of this lady for
years but didn't take her seriously until recently. You might be
familar with her but she definately has the credentials and has helped
people. I have started her theropy and I believe it helps people. She
is at http://www.drday.com
Hope I can be some help.
FG
"kcaj" <kcaj_...@yahoo.com> wrote in message
news:3b491d51.15298820@news...
> I am in my 40's and have a severe nuerological problem. i am on a
> walker but I shake in the lower half of my body and use the bathroom
> all the time. I have a hard time bending my legs. I go to the V.A. in
> Atlanta but they haven't given a name to what I have but it is similar
> to polio. I don't like quack theropy but i have known of this lady for
> years but didn't take her seriously until recently. You might be
> familar with her but she definately has the credentials and has helped
> people. I have started her theropy and I believe it helps people. She
> is at http://www.drday.com
> Hope I can be some help.
>
I am familiar with Dr. Day. We have tried various alternative treatments to
no avail. I have read her book on Aids but I have not seen any of her
videos. What exactly does her therapy entail kcaj?
Regards,
FG
ASmith0649
certainly can take a hefty toll.
Perhaps you have already looked into this, but I'll suggest this anyway: try
contacting the independent living center (ILC or CIL) nearest to you. They may
be able to provide assistance directly or indirectly.
In addition, you might try contacting ADAPT (Americans Disabled for Attendant
Programs Today) of Texas. I am unable to access their web site as I write this
post; the URL is www.adapt.com. I believe the Texas chapter is in Austin.
Either Bob or Stephanie might be able to provide ideas or assistance.
Even though you said you cannot afford to get help in - my opinion is that you
need to find a way to do this to preserve your own physical and emotional
health.
Best Wishes,
Andy
Liz
When my Dad first starting really needing help (he has MS also, plus 5
strokes and other problems), Mom (Diabetes, 7 osteo fractures, other
problems, depression) discussed divorce, but mostly for financial reasons.
She feared Medicaid and didn't want her assets attached to his. They never
did divorce and both are now separately on Medicaid.
Of course, you are still young and deserve happiness. I am glad your wife
sees your point of view and that you can discuss your feelings together. My
parents were never able to do this, which led to loads of resentment and
anger of both of their parts.
Do you have a senior day-care facility near you? Some of these go on an
as-you-can-pay basis and are very helpful!
During the worst of times with my folks, when dad was in a bad nursing home
and mom was in and out of the hospital, I was so tempted to say, "I just
can't take any more of this!". However, we CAN'T say that, because, of
course, this is our life :)
Do you have a church that you attend? Is there anyone (a Deacon or Pastor
perhaps) to whom you can talk about helping out?
Good luck to you!
Liz
"FG" writes
> Yes, she is very understanding. She told me that she has often thought how
> unfair the situation is for me. We are very open about our feelings.
(snip)
FG
> Do you have a church that you attend? Is there anyone (a Deacon or Pastor
> perhaps) to whom you can talk about helping out?
Yes we have a church we belong to and they have been helpful on and off.
Just yesterday out deacon and his wife visited and asked what we needed. I
asked for people to come in and get trained to transfer Susan and allow me
to go to work for a few hours each week. They are also going to start
bringing meals over again. I had waved my Sunday school class off of that
years ago because I too proud I guess and you know how it is you get your
own menu down.
Placing her somewhere isn't what she wants I know. I can't just do that to
her, I want her to be able to live in her home with her cats, fish, and
books. If I can get her on Medicade this can happen. Her oldest daughter
lives just a few miles away. Our son lives close by also.
I know I must sound like a heartless bastard but I'm not. I would not hold
her to this life. I won't live a life of resentment and misery because of
what other people might think of me. The biggest thing to overcome has been
my own feelings of obligation to someone I do truely love. I have come to
realize there are just simply limits to what a person can expect of
themselves. This has been a reoccuring them in my wife's deterioration. I
would constantly have to remind her of her limitations. That she had to
operate within those limitations or risk injury or worse. I see my
limitations. My inner self, my subconscious, my unconcious mind, my soul, my
gut, whatever it is, is telling me I've done enough now ,let someone else
take over or you are going to suffer some dire consequences.
Liz
I sincerely hope you can make all these arrangements for both you and your
wife. I am glad your church is going to be helping again. I'm sure it's
hard to let them :)
You don't sound heartless to me, far from it. Good luck to you!
Liz
Ps. Oh yes, why the "frozen ghost"?
"FG" <frozen...@home.com> wrote in message
news:ndm27.470133$oc7.75...@news2.rdc2.tx.home.com...
FG
Thanks Andy, I've never heard of those organizations. I've contacted the
Texas Department of Human Resources however. I'll see what I can find out
about these organizations.
Regards,
FG
"ASmith0649" <asmit...@aol.com> wrote in message
news:20010709065752...@ng-cs1.aol.com...
FG
> FG,
>
> I sincerely hope you can make all these arrangements for both you and your
> wife. I am glad your church is going to be helping again. I'm sure it's
> hard to let them :)
>
> You don't sound heartless to me, far from it. Good luck to you!
>
> Liz
> Ps. Oh yes, why the "frozen ghost"?
Thanks Liz. The Frozen Ghost? Well, it's the title of an old B movie, it
describes how I feel sometimes, and I guess I've read too many comic books
in my lifetime.
Al Knowles
Almost the only difference is we live in New Orleans. My wife and I no
longer share the same goals or interest or priorities, if we ever did. I
think she would have already
walked out on me if she could walk at all. Some couples who should not be
together
stay together because of the children. We stay together because of the MS.
But unlike children, the MS will never leave.
I want so badly to leave the MS and find someone who doesn't NEED me,
but WANTS me. But what woman is going to want the heartless, despicable
bastard who left his disabled wife?
If you want to talk some more, email codef...@hotmail.com.
I can't offer any solutions, just commiseration.
>Hello,
>
>I am the caregiver for my wife of 18 years who has been diagnosed with
>chronic progressive multiple sclerosis for 9 of those years. Two years ago
I
>had to start working out of the home because her condition had deteriorated
>to the point where she could no longer transfer herself. We live in Texas.
>
>Her condition has continued to decline and with it mine has also. She is
not
>yet confined to bed but can barely feed herself. I am 43 years old and feel
>much, much older. We have many assistive devices provided by my insurance
>company but the one thing needed the most they will not provide, namely in
>home health care. We have used the $15 an hour agencies and tried to find
>individual help and none have worked out. Quite frankly we can't afford it
>anyway.
>
Liz
I could have written your letter myself. Almost the only difference
is we live in New Orleans. My wife and I no longer share the same
goals or interest or priorities, if we ever did. I
> think she would have already walked out on me if she could walk at
all. Some couples who should not be together
> stay together because of the children. We stay together because of
the MS.
>
> But unlike children, the MS will never leave.
>
> I want so badly to leave the MS and find someone who doesn't NEED
me,
> but WANTS me. But what woman is going to want the heartless,
despicable
> bastard who left his disabled wife?
Sir,
You have put into words for me what I know my mother felt why she
cared for my (MS and other problems) father.
Thanks
Liz
StillWaters
just want to leave for my own sanity. But I also know that I love her and
could never leave. Things are more aggravating in a way because she is the
one who makes herself ill. 20 years of diabetic non compliance, then she
stops taking her meds or eating or what ever else she can to screw herself
up. They say it's depression etc. I just know it is slowly destroying my
life too.
But I made a vow for better or worse. I am more than ready for the better
part!
--
Claudia AKA StillWaters
Visit my two web sites:
Gay Parenting
http://www.suite101.com/welcome.cfm/gay_parenting_families
Home page with 100's of low fat sugar free recipe
http://dietchef.ecorp.net
"Al Knowles" <codef...@home.com> wrote in message
news:WETo7.14862$707.7...@news2.rdc2.tx.home.com...
kl...@home.com
>
>>Hello,
>>
>>I am the caregiver for my wife of 18 years who has been diagnosed with
A few years ago I met Bill, a person with advanced MS, on only three
occassions. I don't know Bill well enough so the stuff below on the
Canadian services available for advanced MS persons is just what I
could learn
Bill was an active and popular high school teacher when the early
signs of MS started to appear. By the time he was diagnosed with MS
he could no longer carry on a full teaching load so he retired on his
teacher's disability benefits. I believe he is also able to draw on
the Canadian Assured Income program (AISH)... sorry don't know the
program's full name.
His wife divorced him promptly and had custody of their child. I did
not feel comfortable enough to query him on this subject but I think
it was a means to maximize his disability benefits. With an able
spouse the health system would have required her to be the full time
care taker without compensation above the usual disability
eligibility. Since he has no other kin he became the responsibility
of the state. Canadians have a universal health insurance system and
thank god for that.
Bill lives in a 26 unit downtown cooperative apartment complex funded
by the health region authority. Legally its a private apartment
company but its funding is drawn from the government's health budget.
Every tenant in this complex is severely disabled. Each apartment is
similar to a bachelor unit with an open plan kitchen-hall-sitting
room, a main bedroom with attached bathroom plus an additional 8'x8'
den or storage room. A full time care taker lives in an annexe
apartment that has a connecting door into the main apartment.
In Bill's case the caretaker is a Filipino lady with two Jr. high
school age kids. Under an immigration scheme this lady is obligated
to work at this job for two years after which she is eligible to apply
to become a landed immigrant. This looks like a very attractive
scheme as she has board and lodging paid for, or more likely she has
to pay a subsidized rent, and a headstart to get her kids into the
Canadian school system. Bill will probably be allocated another
Filipino caretaker once the first one serves out her bond.
Bill's assistive equipment includes a ceiling rail mounted lift from
his bed to the bathroom, a motorised articulated bed and of course two
computers with hands free mouse input interfaces. He can move only
his head and has a very residual twitch of his left wrist he uses to
mouse click. He still does some work as a computer graphics artist,
writer and web designer. Probably by now his MS would be too advanced
to permit this work. I did not see a motorised wheelchair then and he
would not be able to control one anyway. The caretaker takes him out
on a regular wheelchair. I think he owns a car which the caretaker
drives. Arrangements can also be made for special buses to transport
disabled people.
The apartment manager is fully trained to take care of people with
disabilities. By that I mean the management is fully sensitive to
their needs. Twice a night the apartment caretaker will visit every
apartment to turn over the tenant to reduce the incidence of bedsores
and of course to provide positional comfort as the tenant could not do
this themselves. This allows the personal caretaker her full night's
rest. She not called unless there is an emergency. There is always a
voice activated bedside phone-in emergency service where the phone
automatically calls the emergency operator and the key word "Code
(colour) " elicits an emergency medical response.
Rick Poole
I just popped back in here and read the most recent responses to my original
post. I appreciate your kind words. Here is a snapshot of our current
status:
Last week I was placed on short-term disability. I was told to go home and
get well and that they didn't want to loose me. I was shocked at first but
then realized this may be an answer to prayer. Because of an understanding
boss and friends taking care of me at work I have been able to stay employed
all of these years that I have been caring for my wife. I don't think I
could have done it without someone looking out for me.
Our lives have been crushed; pulverized by the weight of this horrible
disease. After much therapy and soul searching I am doing what I know I
must, I'm going to take care of myself. I am filing for divorce, we're going
to sell the house and pay off debts and go our separate ways.
In all reality my wife should be in a nursing home. It is simply too much
for anyone to handle at home. Her hospital stays are more frequent and her
need for constant care and monitoring is too great. Naturally she has a hard
time accepting this. Things would be easier if she would but I understand.
She is a fighter. She is like a strong person drowning. In their panic they
threaten to pull their rescuer down with them.
I am, quite frankly, done. There is only so much drugs and therapy can do;
sometimes the only part of the equation that can be changed to achieve the
desired result is the situation. I intend to change my situation.
My greatest desire is to see my wife taken care of properly. Unfortunately
convincing her as to what form that care should take is difficult. I have
said all I can say and offered all the help I can give sans martyrdom. My
life is in shambles around me but I intend to escape with my soul.
I know longer care what family or strangers think or will think. Let them
come and walk in my shoes for a month and then they'll have some common
ground to approach me on.
Reading this it sounds like I'm a bit angry. I guess I am. I'm mad as hell
at MS and the havoc it has caused in the lives of my wife, family and
friends. I'm angry that I've come to the end of myself and can't be the man
I promised I would be.
RP
"Al Knowles" <codef...@home.com> wrote in message
news:WETo7.14862$707.7...@news2.rdc2.tx.home.com...
Liz
> I just popped back in here and read the most recent responses to my
original
> post. I appreciate your kind words. Here is a snapshot of our
current
> status:
Hi Rick,
I have wondered about your situation and was glad to see you post!
Rick, only YOU can decide what is right for your situation. I wish
you all the luck and know that you didn't arrive at this decision
lightly.
Liz
StillWaters
everything I have to but it is my spouse yelling at me that I don't love
her, don't care about her and pitching a fit like a 6 year old that I can't
take. Love goes just so far!
--
Claudia or StillWaters
655-363-157
Visit my two web sites:
Gay Parenting
http://www.suite101.com/welcome.cfm/gay_parenting_families
Home page with 100's of low fat sugar free recipe
http://dietchef.ecorp.net
"Rick Poole" <ricky...@home.com> wrote in message
news:hmgH7.84363$pb4.43...@news2.rdc2.tx.home.com...
Al Knowles
nice person despite the disease stealing all her hopes and dreams.
StillWaters, my guess is your wife is angry and frustrated and depressed
about the disease and would treat ANYONE just as badly. She resents having
to be taken care of, and by extension resents the caregiver -- you.
Of course, just because you may understand it doesn't mean you can do
anything to
make her stop doing it, but maybe you'll find it easier to take.
Just my two cents.
"StillWaters" <diet...@spam.free .home-newsguy.com> wrote in message
news:9smss...@enews4.newsguy.com...