duplinwino
Distinguished member
- Joined
- Mar 14, 2007
- Messages
- 101
- Reason
- Loved one DX
- Diagnosis
- N/A
- 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! ). 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...
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! ). 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...