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duplinwino

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Mar 14, 2007
Messages
101
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Loved one DX
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Country
US
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NC
City
Pittsboro
It's been weighing heavily on my mind these past few days as my husband gets weaker and weaker and I wonder how much longer he will be able to stay home alone safely. He lost use of his right arm some time ago and his legs are unstable, though he's not in a wheelchair yet, I don't think it will be too much longer. His left shoulder has atrophied so he's not able to raise his arm and the muscles in his hand are becoming weaker. When he loses his left arm, he will be very dependent of course. He has no swallowing, chewing, or respiratory issues, only weakness in his limbs.

I work full time, always have. I carry my, his and our daughter's health and dental insurance (Medicare kicks in for him July 1). We won't be able to make ends meet with his SSD payments. I have to work. But I also need/want to be able to take care of my husband.

I know with 100% certainty that he will not allow someone in our home to help him when he really doesn't like that I have to do it and becomes pretty cantankerous. And truth be told, I don't want that. I want to be his main caregiver while I can handle it.

Any creative ideas, suggestions, thoughts are appreciated!
 

beaner1

Active member
Joined
May 8, 2007
Messages
58
Reason
CALS
Country
CA
State
Alberta
City
Redcliff
Hi Duplinwino,
Your question was also my biggest concern - I work full-time too - can't afford to stay home as we need the money, and my benefits! My husband didn't want help either - stubborn SOB! - my kids and I were terrified to leave him alone, but sometimes had no choice. We had many battles about this very thing - thought I was going to lose my mind with worry, my kids were on the verge of moving out because of the tension and stress - it was not pretty!

What finally happened was my husband had to be hospitalized because of pnuemonia, and a heart attack (from the stress of being sick!) - he was in the hospital for 83 days. When it was time for him to come home, I refused to do so unless we got some help and proper equipment - I just couldn't do what we did before! He was unable to move, couldn't eat, breathing was terrible, etc. I now have a nurse for 4 hrs. in the morning, and a home care aide for 4 hrs. in the afternoon. My daughter is home until the nurse comes, and I'm home when the aide has to go - he can't be left alone at all anymore. Things are so much better - he's receiving the proper care, and my kids and I aren't so stressed out - plus, I do think he's happier too knowing that help is there if he needs it.

We were lucky in the sense that our health region provides funds for a home care aide (cheaper than hospitalization, you know!), and our insurance helps pay for nursing - don't know what else I'd do as we don't have family nearby that would help out - I'm grateful that my kids are still around to help - they are so wonderful to their Dad (and me!). We went through hell before - so glad that's over!

All I can say is that the reality is that you will need help - and very soon - what happens if he falls, and can't get up? Not only that, but you run the risk of becoming ill yourself from burnout - no one can do everything. Maybe if you have a frank discussion about the situation? I know it didn't do me any good! I wish you all the best - it's a tough situation - for both of you.
Good luck,
Beaner
 

duplinwino

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Messages
101
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Loved one DX
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N/A
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US
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NC
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Pittsboro
Thanks Beaner. Stubborn is an understatement. He was an active, strong willed 30 year old going into this, so like everyone else in this situation, he takes his inability to do things any longer very hard and is extremely frustrated by it. His family was supposed to move closer this summer but that fell thru. I don't think they realize how bad off he is. My family is close by, but he denies help from them. My mom comes over on nights that he has lodge meetings and is gone for the evening so she can help with the housework. It's getting ridiculous. I have the neighbor kids come over and weed eat the yard and I do the best I can otherwise.

Anyway, you're right, I don't know that talking will do any good. Sigh. Thanks though.
 

brooksea

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Country
HM
It really saddens me to read y'alls stories.

If people could only walk a mile in our shoes, I think we'd have more help, both "physically" and "financially!"

Most people go about their daily lives with no substantial worries, except the price of gas maybe.

My husband had me call the company that supplied the cough assist machine, because they were charging such an outrageous price monthly and when he got the machine they didn't discuss charges. They will be picking up the thing, but we have to sign a release. I figured up the expense, and just our copay over the allowed billing cycle will practically pay for the [email protected]#% thing. The amount Medicare pays the company is ridiculous and just reeks! He was so steamed about this and like a mad hornet. We now have a loaner from the ALSA and he is happy.

I've had to get a part-time job, so I can pay for insurance for myself and son. I don't know what will happen when my husband can no longer do for himself. I keep telling myself that his family will somehow help. But what will happen to insurance, as he is the same way- doesn't want anyone else caring for him but me?
 

beaner1

Active member
Joined
May 8, 2007
Messages
58
Reason
CALS
Country
CA
State
Alberta
City
Redcliff
CJ and Duplinwino,
You're so right about the "mile in our shoes" - if only people knew what we all go through! Very few people actually do help out - those that do are angels! I know that the only way I get through this is to just worry about one day at a time - that's all I can handle.

CJ - you are so right about gouging by these damn companies - we have the same thing in Canada (unfortunately!) - don't know how they sleep at night, and I don't know what we'd do without the ALS Society. We certainly couldn't afford to buy this equipment.

My husband is quite progressed - he can just barely feed himself - has not been able to walk for almost a year, can't sit up by himself, is gradually losing his voice, almost lost the use of his hands and arms - we have him at home since he was released from the hospital - my livingroom is now a hospital room. It's very difficult at times, but I do have help (Thank God!) - there's no way I could manage otherwise.

I wish you both luck with your husbands - hopefully, they'll realize that you need assistance to care for them - sometimes if you have a meltdown in front of them it helps (not that I've ever done that :)).

Isn't great that we have this forum to go and talk with people who really do know what we're going through?
Beaner
 

duplinwino

Distinguished member
Joined
Mar 14, 2007
Messages
101
Reason
Loved one DX
Diagnosis
N/A
Country
US
State
NC
City
Pittsboro
That's horrible about the cough assist CJ, but glad you could get it thru ALSA. They are a GODSEND. The first time I called to get some information, the lady was on the phone with me for over an hour, very helpful, very compassionate. I later inquired about a walker and powerchair from the loan closet and Brian had those two things within three days, delivered to our door. Just AMAZING. I can't say enough about them.

Thanks and hugs to both of you
 

kelly

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Oct 6, 2006
Messages
661
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US
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ny
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saratoga springs
caregiving

Seems like we have a group with young husbands here. I could totally relate to your posts. Also think the ALS center is a godsend. They have been so helpful as a resource. My friends constantly ask me how they can help. Well, I have finally given in..and allowed people to help me. Juggling two little ones ..and this disease can be a struggle. I just hold on tight to the "good days". Thinking of you all tonight. Fondly, KR
 

CindyM

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New England
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Anytown
It is hard enough taking care of a young family, never mind a PAL as well. I am so glad you guys found each other! You are so right that some people only have to worry about the price of gas. Life is unfair and the best we can do is the best we can do, it seems. Again, I am glad you have each other to lean on! Cindy
 

duplinwino

Distinguished member
Joined
Mar 14, 2007
Messages
101
Reason
Loved one DX
Diagnosis
N/A
Country
US
State
NC
City
Pittsboro
Thanks CJ! Yes, that's my Sara. She and your son are a year apart or so I think? She turns 9 in September.
 

Tganz

New member
Joined
Jan 29, 2008
Messages
6
Reason
PALS
Diagnosis
10/2007
Country
NZ
State
Bay of Plenty
City
Tauranga
Same situation

Hi to everyone on this thread. (It's just what I needed)

I like you all face the same issues. Husband is stubborn. In terms of his conditions progress it is moving relatively slowly, he has no issues with eating/swallowing etc in this respect he's as healthy as an ox. Left leg is very very weak, right leg and arms are progressively getting weaker. We seem to be very lucky here in NZ with the support we receive from the MND association. Have received all of our equipment on loan from them free of charge ie, bi-pap machine, electric bed, electric armchair, wheelchair (manual) has been fitted for an electric wheelchair also compliments of the system we have in place here. Ramps and wet shower area have been installed at home and paid for by funders upon the recommendation of our medical team everything in this respect has been wonderful. We have been given up to 24 hours per week for home support services which we have not used yet. I don't feel it is right to take advantage of that just yet. We have 2 teenage boys at home and a 10 and 7 year old. I work 30 hours a week and husband receives what we call here the sickness and disability benefit. (Which an ant couldn't survive off let alone a family) However I know there will come a time in the not too distant future when we will have to use this service.
Just want to say thankyou to the person who started this thread it is something I have been fretting about for a long time. Will read and learn from everyone here.

God bless everyone, take care of yourselves as well as your PALS
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Speaking as a PAL, the first time I went to a support group meeting there were 8 or 9 of us plus husbands or wives in the room. The biggest topic of discussion was MY GOD what will happen when I can't wipe my butt any more? I'll just die! Well that came and went. I'm not dead. I have strange (but very nice) ladies come and shower and dress me every day now. We laugh and talk and it is no where the big deal I thought it would be. Tell your husbands that if the tough old fire Captain from Canada can do it they can. It's really not as bad as you think it will be. I will admit though that I draw the line at my men friends holding the urinal for me. Wives are ok. LOL
AL.
 

CindyM

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New England
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Thanks Al for explaining why some guys might be reluctant to have help come in. I guess it is different for the ladies. LOL once you deliver a baby you lose all sense of modesty. At least some of us did. :-D

I never once have thought about who would clean me up. I worry that they might leave me on the potty for an entire Red Sox inning, though. And if the Patriots were on I'd have to pee in my chair, LOL.
 

duplinwino

Distinguished member
Joined
Mar 14, 2007
Messages
101
Reason
Loved one DX
Diagnosis
N/A
Country
US
State
NC
City
Pittsboro
LOL! Thank you Al and Cindy, that just made my day!
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
One of the first things I thought of when contemplating the loss of my hands was "who's going my wipe my butt?". I was so thrilled to hear about the bidet toilet seats. What a great idea! And my friends are pretty happy too!

Sharonca
 
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