[whiteonree]

Hello. This is my first post. I have been the spouse and 24/7 caregiver for my quad husband for 10 years. I am 63 years old. I have been reading on this site and think many need lots of hugs. I lost my mother in August, but she lived with me for 16 years. bedridden after 5 strokes. I too care for my 24 year old DD stepdaughter. Truly there are days that I don't think I can go anymore. I try not to spend much time being depressed. It is a choice I have made. My husband made a very poor choice, had a single car accident and here we are. I go thru times that I feel we should have a wheelchair built for two. But on the flip side, he didn't END our life, our marriage, he CHANGED IT. As I sit here struggling to find encouraging words for others, I am lost in a sea of emotions. There are times in the day I wish I could just go away, then after I finally get him in bed after bowel programs, cath, pills, transferring, turning, etc and he falls asleep, I have an overwhelming love for him. It is hard not to have him hold me, have sex with me. To get near him and all I hear is "will you scratch my head, clean my eyes, ears, get the hair out of my nose, I need a drink, change the tv, turn volume up or down, etc etc" makes my butt tired. But I am reminded of how difficult it must be for him to ask me. He will sometimes tell me how horribly dehumanizing, it is for him. He is 100% dependent. It hurts to see love story movies. People laughing and walking and holding hands.

Just a note. When someone says, Take care of yourself, please don't take it lightly. I used to think that taking care of myself was making sure my husbands nails were clean and trimmed. My house was clean. Tried to be perfect. As someone else said, lifting can and will cause permanent damage. I have back issues, rectocele. Have a back up plan if something happens to you. I recently went for a routine colonoscopy and they punctured my colon. I had to have emergency surgery and didn't leave the hospital for 7 days. OH NO. I was making arrangements for my crew while they were prepping me for surgery. The nurse let me use her cell phone. I was scared to death. I had to contact hospice for mom, elder services for my husband, and found his sister to beg her to come help. Remember you aren't supposed to lift for weeks, yeah right.

I don't know if anything I said makes sense. I guess my point is I feel blessed. I feel blessed that I am both mentally strong, and physically strong. I look around me and know how much worse it could be. But I too am lonely, tired, empty of a lot of emotion, and feel cheated out of what is left of my life. However, I know I will not leave him.

[SuzinNYC]

I am about to marry the man I fell in love with, who is a C6/7 and there are times I am worried about our future together and whether or not I will be entering into a life I am not equipped to handle. But I am blessed with a wonderful support group of friends and family, and luckily he deals with things with a sense of humor and a positive attitude that I find remarkable. I'm sure some days I will feel overwhelmed too, but I can't imagine my life without him, and I don't want to. Take care of yourself, try to find a support group and some respite care, so that you don't break down under the heavy load you carry. God Bless.

whiteonree, on Jan 29 2010, 09:06 AM, said:

Hello. This is my first post. I have been the spouse and 24/7 caregiver for my quad husband for 10 years. I am 63 years old. I have been reading on this site and think many need lots of hugs. I lost my mother in August, but she lived with me for 16 years. bedridden after 5 strokes. I too care for my 24 year old DD stepdaughter. Truly there are days that I don't think I can go anymore. I try not to spend much time being depressed. It is a choice I have made. My husband made a very poor choice, had a single car accident and here we are. I go thru times that I feel we should have a wheelchair built for two. But on the flip side, he didn't END our life, our marriage, he CHANGED IT. As I sit here struggling to find encouraging words for others, I am lost in a sea of emotions. There are times in the day I wish I could just go away, then after I finally get him in bed after bowel programs, cath, pills, transferring, turning, etc and he falls asleep, I have an overwhelming love for him. It is hard not to have him hold me, have sex with me. To get near him and all I hear is "will you scratch my head, clean my eyes, ears, get the hair out of my nose, I need a drink, change the tv, turn volume up or down, etc etc" makes my butt tired. But I am reminded of how difficult it must be for him to ask me. He will sometimes tell me how horribly dehumanizing, it is for him. He is 100% dependent. It hurts to see love story movies. People laughing and walking and holding hands.

Just a note. When someone says, Take care of yourself, please don't take it lightly. I used to think that taking care of myself was making sure my husbands nails were clean and trimmed. My house was clean. Tried to be perfect. As someone else said, lifting can and will cause permanent damage. I have back issues, rectocele. Have a back up plan if something happens to you. I recently went for a routine colonoscopy and they punctured my colon. I had to have emergency surgery and didn't leave the hospital for 7 days. OH NO. I was making arrangements for my crew while they were prepping me for surgery. The nurse let me use her cell phone. I was scared to death. I had to contact hospice for mom, elder services for my husband, and found his sister to beg her to come help. Remember you aren't supposed to lift for weeks, yeah right.

I don't know if anything I said makes sense. I guess my point is I feel blessed. I feel blessed that I am both mentally strong, and physically strong. I look around me and know how much worse it could be. But I too am lonely, tired, empty of a lot of emotion, and feel cheated out of what is left of my life. However, I know I will not leave him.

[Bob C]

Sorry, this post was intended for SuzinNYC. I goofed.

Hi,
If your guy is a c-6,7 he should be pretty independent if he has had good rehab. I have been a c-5,6,7 complete quad for more than 55 years now, and my wife of 44 years has had to do very little for me. I am age 72 now and she is 69, During the past few years, I have been using some part time help for commode transfers and my bowel routine because my shoulders have gone bad. However, I still share the cooking, laundry, and cleaning chores. And yes, we still have an intimate relationship. You should be hopeful regarding your future, but there will be some "down" times. Be sure to have a back up plan for dealing with issues when you get sick, etc. Best wishes.

This post has been edited by Bob C: 29 January 2010 - 08:47 PM

[Tetracyclone]

Bob-her post says he is C3-6. He could learn to use the remote on the TV, though.

[whiteonree]

Thanks for the responses I received. I am not quite as tired as I was when I wrote that. There is no question in my mind that he gives all he can. I can make him laugh and having his disabled daughter here has just been wonderful. She is funny and just adores her dad. Her job is to turn the newspaper so he can read. The only thing I ever have requested is, Be good to me, and I don't expect anything that you can't give, BUT ALL THAT YOU CAN. I am a loyal soul and watched my dad care for my mom while he was dying with cancer with such love. Most days are good. I can say that I don't go to bed upset and always wake up in a good mood. I was watching him when his home care nurse was here and the blood person was here. He is still a little flirt and a cutie. I told him after they left that I thought he was still very handsome.

[SandieT]

Quote

Hello. This is my first post. I have been the spouse and 24/7 caregiver for my quad husband for 10 years. I am 63 years old. I have been reading on this site and think many need lots of hugs.

So do you too.
Stay strong.