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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
State
NC
City
Pittsboro
I'm really going to sound like a whiner, but here goes...

We're going on three years now. DH has been in a power wheelchair about 10 months, his right arm was wasted some time ago and his left arm has very little use left. He does not have breathing or swallowing issues at this point.

I bathe, dress, feed, transfer on my back, do everything for him alone. Mind you I'm 5'3" and he's 6'3" and 200lbs (I'm not telling my weight! :p). I work 7-8 hours a day to keep benefits and some income coming in and he is left at home alone with a condom catheter, the TV remote in his lap, and phone. I make him a peanut butter sandwich left within his reach which he can manage to hover over and eat. This is HIS choice as he doesn't want ANYONE coming in the home to help. He's already had bacterial pneumonia, I'm afraid from aspirating food while hovering over it like he does.

At night he has to be repositioned anywhere from two to five times due to pain in his hips and elbows, so I get very little sleep. Then I'm up at 5:30 to get him bathed and dressed, get myself dressed for work and my almost 10 year old off to school. Then it's back home to cook supper, help with homework, feed him and get everyone in the bed, etc. etc. etc.. My mom and dad are close by and help out quite a bit with laundry. My neighbors occasionally mow the yard when they have time but they're busy with four kids themselves.

I. AM. EXHAUSTED.

His parents called and asked him to go with them this weekend to their lake house and he refused. This isn't the first time. He doesn't want them helping him pee or helping reposition him at night. I got really upset because I feel like he never thinks about ME and how I deserve some rest and a break from caring for him. He doesn't want anyone else doing things for him. He tells me that if he were in my position, he wouldn't want a break. Talk about a major guilt trip.

I've talked to him several times about someone coming in to feed him a good lunch, help with his catheter (most of the time he won't drink anything and holds anything he has until I get home) and most of all, get some PT! I would think it would help with his pain at night, though I may be wrong. His doctor is more than willing to get this going but he says no.

He gets ill when my mom comes over and helps clean upstairs or get some things done for me. He doesn't understand why I accept help from the neighbors to take off trash, fix something for me, or mow the yard. I'm supposed to be able to handle it.Everything is an argument. He makes me feel like a failure because I'm NOT able to keep up with everything on my own. I've had to change the oil and even a valve cover gasket on one of our cars (he used to be a mechanic). Not to mention we have four vehicles, I want to sell all but the handicap van and get a nicer car. He is downright pissed about this and thinks I should drive the 13 year old car because it gets good gas mileage (the other two are 10 and 15 years old). What's wrong with me wanting a nicer, more reliable car to commute 30 minutes each way every day?

Got off subject, but I'm so frustrated with him right now. We've been together 15 years, married 12 and I love him with all of my heart, but I'm starting to resent him. I am starting to have horrible feelings towards him. I'm just going thru the motions of caring for him. I feel like a prisoner. If I want to go meet my best friend that I rarely ever see anymore for dinner he gets irritated. He questions every decision I make or thought I have.

I need CALS and PALS both to give me some advice and thoughts here. I HATE that this has happened to him. I HATE that he can't do the things he used to love. But this just isn't fair...
 

beverly rees

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Messages
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Reason
Lost a loved one
Country
US
State
ca
City
portola valley
Shortly after my husband was diagnosed with this disease we discussed how we were going to handle the future. We agreed that when he needed more care that we would definitely hire outside help. This is the only way to keep your relationship as a husband and wife and to not cause resentment.

We went to a support group meeting and they stressed the importance of caretakers taking care of themselves. You need to have a life outside of the house and see your friends and be able to vent.

I also talk to a therapist once a month which really helps.

You need to set some boundaries with your husband and let him know you also have needs. If you don't take care of yourself and get sick who will take care of him.

Please take care of yourself. Bev
 

mytwoboys

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Joined
Jun 10, 2009
Messages
70
Country
US
State
OH
City
Canal Winchester
Your life has many similarities to mine - I have 2 kids 10 and under to worry about. I would really like to communicate more with you about this..... This is my first post - I'm not sure how we could/would hook up via email if you wanted to....
 

paulw

Member
Joined
Feb 6, 2009
Messages
25
Reason
CALS
Country
US
State
ny
City
sackets harbor
I have been thru similar issues with my wife. Since she was diagnosed in late 07, every time we hit a threshold (communication device, wheelchair, power chair, peg tube, etc) she refuses it initially. She was the same with home health aides coming in. After I reached the point that you seem to be at, I just arranged for it figuring that seeking forgiveness was easier that seeking permission. Long story short. We now have home health aides 5 days a week that do bathing, limited feeding, some light laundry, make the bed, and my wife loves it. She sees me in a better mood and that is good to.

On the issue of repositioning your husband at night. We had a similar problem and we got a fancy air mattress from our health supplier that inflates and deflates in differing positions to shift the weight bearing areas on my wife’s back, butt and legs. She loves it. Very rarely do I have to shift her in the night.

I think all caregivers go thru the same feelings as you. I know I have. Every weekend one of my wife's sisters comes to the house and it gives us each a break from each other. HUGE help. Not sure where I would be with out her.

I don't post often as some on this board, but I read it a lot. Just seeing that others are living with the same feelings, problems and frustration has helped me cope. Hopefully you can get the help you want and need.

and yes. I am exhausted too.

Good luck

Paul W.
 

indigosd

Very helpful member
Joined
Jun 22, 2009
Messages
1,784
Reason
Lost a loved one
Diagnosis
07/2009
Country
oz
State
oz
City
RURAL
I to am exhausted and no, your not whining at all. My suggestion is that you need to set boundaries with him and make time to take care of you. It is hard for everyone -all these changes that none of us have control over and that change our self images, our finances, our social lives, our relationships. ALS is soooo a family disease! Ask him this question, what happens if I get sick from burnout? Who will take care of you and the kids? Tell him "I NEED HELP"! My dh does not want to go to support groups or be proactive in his health so I tell him-"I NEED SUPPORT" and I do it. He doesn't want to ask anyone to help us and I ask. That is my right :] I also remind him that it is just as Blessed to RECEIVE as it is to give and that his life lesson is to accept the blessing of receiving! Remind your dh that his Momma grew his body, washed it many times and will not be offended in helping him now PERIOD! Do you have access to a local ALS chapter? Will your insurance cover respite care? You are not alone. How old are your children? We have a 12 year old son so I understand where you are with it all.
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,560
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
Totally understand the exhaustion and frustration. And because it took us so long to get a diagnosed (I fought with him AND doctors for 2 years saying something was very wrong) I need to remind myself that it's not 2 months of frustration and weariness but 2 years worth. And Glen refuses to take any kind of active stand or position or let his feelings be known. I told him "You know that leaves it all on ME" and his answer? "Yup." You are definitly not alone. And it is more than ok to take a stand and say "No... I need a break. Period." Guilt trips only work when we buy into them.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi duplinwino. I understand how your husband feels. I resented it somewhat when we got homecare. I got over it. Strangers showering and wiping my butt bothered me for about 2 days. My daughter helping me pee or wiping my butt still bothers me but not that much. I still want my wife to do all for me but I'm resigned to the fact she can't do it alone. Your husband needs an attitude adjustment. Is there anyone you can get to talk to him? It's hard on both of you. He needs to realize that.

AL.
 
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