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MeigsMom

New member
Joined
Jan 25, 2013
Messages
3
Reason
CALS
Diagnosis
11/2004
Country
US
State
Ohio
City
Rutland
I'm new to this site, so I'm hoping I'm doing this right. I've been at this sole-caregiver thing for quite a while. My husband was diagnosed in 2004 after he lost use of his hands and arms. I became the stay at home caregiver. We live in a very rural area and don't have access to the many forms of support that others can receive. In the last 2 years his lower body has become of no use to him. I'm home all the time. Since our children graduated from high school in May and left for college in August, I have been at this alone. Our ALS/MDA clinic is over 2 hours away in a major metropolitan area. They don't understand the challenges I have here in the country. I bathe, dress, feed, turn, lift, everything all on my own. I've lost contact with my old "friends" because I can't go do things with them anymore. Any time I'd try to call to talk or vent, I'm either interrupted with a need from my husband or they just don't understand. When we do go to the ALS clinic, they tell us how well he's doing (it's been 8 years after we told to expect 3-4), and to keep up the good work and come back in 9 months. They say I need to get out once in a while, but don't understand that there is NO ONE to come if I go. We don't qualify for any help until the doctor orders Hospice, and private help is out of our budget with 2 in college on top of everyday bills. As my husband's condition deteriorates, I am becoming more overwhelmed and angry. I can't continue to do this alone, but don't know where to look for help.
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
City
Ottawa
Oh my gosh! Overwhelmed...that's putting it mildly. It's true rural areas are under-serviced. But, I think it also holds true that small communities also have a heart, which is often sadly missing in larger urban areas. Your job as caregiver and a mom have been all consuming and leaving no time for you to maintain or cultivate friendships. Relationships are two way streets;it's possible that you unknowingly gave friends the impression that you're coping quite well and in which case they may interpret your lack of enthusiasm or fatigue as a lack of interest in them. It is my experience that people are generally sympathetic to those of us with ALS. Sometimes, one just has to reach out and ask for help. Perhaps you could contact local churches, volunteer organizations such as the fire dept., high schools, service clubs etc. in an effort to gather a small team of people willing and able to sit with your husband as you do something else. For yourself. If you are uncomfortable doing the asking, enlist a friend to do the asking. I am certain you would garner a positive response and thus create a win/win situation. You get some rest/help, and team members would get the satisfaction which comes with helping someone else and making a difference. Alternatively, perhaps you could rent a room to someone in exchange for x amount of hours per week dedicated to household chores.

Frankly I am astonished that you have not cracked under the pressure. You are surely loving and stoic. Time to be a little less stoic. Time to reach out to your community. There's no shame in that. You may be pleasantly surprised. You husband may enjoy meeting new people as well. That's a bonus!
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,794
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
City
Colorado
I see Independence is 3.5 hours due North. They may come to you. Please call them and explain your situation. They could help!
 

emdad24

Member
Joined
Jan 23, 2013
Messages
16
Country
BD
State
Rajshahi
City
Rajshahi
me too new here. But hope to pass my time with all experience and knowledgeable guys.
 

happygardener

Active member
Joined
Aug 27, 2011
Messages
90
Reason
Loved one DX
Diagnosis
08/2011
Country
CA
State
Nova scotia
City
Porters lake
I am the only care giver for my husband and we too live in a rural area,I have 3 boys in college so I am all alone..I can get on a waiting list for minamal home care(they will help bathe him) but my husband refuses..I get that..I have friends that get my groceries as I cannot leave but as far as social visits..they are nil.He needs attention..Thank goodness for the phone and computer.its help me to keep my sanity!
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
City
Southborough
Is there a Helping Hands org. in your area? If so, check into signing up for help with meals at the very least.

My church and neighbors bring food, meals and help cleaning... please ask a friend to come and look into some help!
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,094
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Another thought that occurred to me -- if the kids are gone, do you have extra room(s) that you could trade out for student/other help? (I don't know how close you are to a college or trade school). Or even at the high school level, clubs often take on volunteer projects...just a thought.
 

themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
You know - Hospice has been wonderful to us. Although Social Security Disability was a pain in the rump to get - (I actually had to go to our congressman) we got it and it comes with some wonderful benefits....Don't do this alone. Life is hard enough. Reach out - there are people who will come and help you - BUT YOU HAVE TO ASK......
 

MeigsMom

New member
Joined
Jan 25, 2013
Messages
3
Reason
CALS
Diagnosis
11/2004
Country
US
State
Ohio
City
Rutland
Thank you, everyone, for the thoughts and encouragement. My husband's neurologist hasn't written an order for Hospice yet mainly because my husband has refused all efforts for outside help. He won't even let our kids (they are 18 yrs old), help move/reposition him. He has always been so strong and we've been self-sufficient for so long. He's not ready to give up and let others help. We live so far from everything and in such a struggling area that there just aren't a lot of options, especially when he is still too proud to accept help from others. I feel so guilty because it makes me angry. Angry that I can't even leave the house when one of the kids are here because he would rather soil himself than ask one of them to help him. He doesn't seem to understand that this is affecting more than just him. Any time I make a comment lately about going somewhere, he says something like "you'll be able to go where ever you want someday." Then I just feel guilty again for suggesting there might be more for me outside of this room we've been banished to. I'm just so glad that I have found this site. I feel less alone and a little less ashamed of the feelings that go through my head from time to time.
 

vickim

Very helpful member
Joined
Sep 20, 2012
Messages
2,255
Reason
Friend was DX
Diagnosis
03/2012
Country
US
State
MO
City
aaaa
It sounds to me like he is still struggling with the acceptance of his condition or he has a fear that you will leave him. Have you talked to him about all the things going on with him and with you? He needs to see your need for help and relief.

No one here likes being dependent on some one for simple basic care. It is embarrassing and degrading but there comes a point in time that you have to take help.

Take it in baby steps, maybe by taking an hour to yourself somewhere in the house or near by and then extend it from there so he sees you aren't going to leave him. I wish you peace and sending love.

No one here will judge you for your feelings, what you are feeling is normal. You are strong, brave and very loving.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,094
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I would have a conversation with him, with the kids sooner rather than later, and let them tell him simply that they want to help and they don't want to regret letting him talk them out of it later. My husband was reluctant to let our adult son help at first. They and you can put it in terms of their needs.

Even if he is oppositional at first, if each of you keeps at it, he will eventually tolerate it without necessarily saying so. Also, I know this sounds harsh, but sometimes you need to use a little "presumed consent" and have the kids actually reach over and do something without "permission" or help you with him so he can see that the sky won't cave in and become more comfortable with physical help.
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
City
Southborough
You are between a rock and a hard place... but your hubby needs to understand that you cannot do it all, or you may get sick or get hurt trying. IMHO, you should tell him that YOU need help, and get someone in, hopefully insurance can pay for it. I would definitely have the kids help, I bet they're feeling pretty useless, watching you... but one step at a time, take it slow... but please, get started.

And have your kids stay with him, and get out once a week!
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
wow--8 years is a long time to be a sole caregiver! I understand...(6 years here). I cant tell I got my husband to accept me having a little life again and letting others help him, but it took a long time and a lot of work and tears on my part. I think you have to really just stand up for yourself and say this is how it is going to be. laying a guilt trip on you because you want to go out for a bit is probably not the guy you married, but it is his fear and sadness rearing up. I wish you had at least one friend you could turn too--it is terrible the way some people turn their back just when you need them most. talk to your kids, maybe they can help you stand up to him and schedule just a little breathing room. it will make you a more loving and less angry caregiver, which will make his life better too.

I am sending you a big hug now!
 

Fling

New member
Joined
Feb 11, 2013
Messages
1
Reason
CALS
Diagnosis
03/2012
Country
US
State
MO
City
St. Louis
Hello Overwhelmed :eek:( Diagnosed March 2012 and still playing the re-active instead of pro-active part :eek:(
PLEASE google the ALS Association in your area. They WILL find a social worker to talk to you. The ALS Association in St. Louis has been WONDERFUL to us. The amount of "toys" they have loaned us from their closet, incredible! Please contact the Area Agency on Aging.
 
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