I am not a caregiver but rather a C6/7 quad who has a spouse that was doing 100% of my care for 30 years. My wife went to work full time and thought she'd be able to handle it all but I knew it would be quite a strain. I reached out to some folks and they were more than willing to help me with my morning routine which takes about an hour and BP every 3 evenings which is 2 hours. Getting someone else to help out has been a godsend. You have to be willing to let someone else do the care which isn't easy but you will both be better off. Good luck.
i am a incomplete c5,6,7 and a very active dating life and i am also a peer support specialist and do community rehabilitation and part of my job is to help families through the hard times. I always suggest that a care giver is brought into the house as i find is the spouse is doing the care in most cases it takes away from the intimacy of the relationship. i have clients who have made arrangements with their spouses that they can go out and date and get sexual needs they cannot get at home and both parties are find with this arrangement. Some people are not cut out to be in a relationship with a person who has SCI period and in those cases its best IMO for a separation as it will only makes things worst in most cases. in my experience 90% of the time a person cannot be a care giver and also a lover as at some point someone gets a bit frustrated and bitter.
I have been primary caregiver for my husband (C5-6 incomplete) after his accident 8 yrs ago. For the first 4 yrs, I did everything myself but then our grown children convinced me to get help. For the last4 yrs I have had someone come in to help get him up and around in the morning which usually takes 2.5-3 hrs. I started with 2-3 days a week and now have someone 5 days a week. It has helped a lot just to have that morning time especially when we have company. I still have to help him at night but it's only for 30 min. It was actually good for me to do things at first so I became aware of any problems and worked on solving them. evangeletabowens,
Just need some advice and a ear from spouses thats been doing this for awhile. Im 2years in and it is very stressful ect.... Input? Or advice?
I've been doing all of my husbands care for 14 years and yes it is very stressful. Especially in the beginning when everything is so new and you're dealing with a million different things. Gosh when I think back to the beginning, I wonder how we survived but somehow we did. There were so so many kinks to work out. For example finding the right condom catheters was a nightmare, every brand we tried just kept falling off. I can't even tell you how many times he had a bladder accident in public. Eventually we found the right brand and have had no issues for over 10 years. I can't even tell you how much I worry when he has a uti, thank god he only gets one maybe once a year now but its still very stressful for me.
The best advice I can give you is, start working on the little things that stress you out and eliminate as many issues as you can. I found that all those little things add up to a lot less worrying. Keep trying different things to solve problems and to relax. The worst thing about myself is that my mind just never shuts up, I'm always thinking, thinking and more thinking. Thinking about what I have to do and what I need to remember to do later and worrying about this and that. So last year, I started learning chinese because its so difficult. When I say learning, I mean I've been listening to youtube video lessons . But it has helped alot, at night when I can't sleep I think about vocabulary instead of other things. Point is keep trying different things that will work for you.
pixie, off tpoic I know, but would you please share that online Chinese link? I studied Chinese with a Taiwanese neighbor long ago. She was teaching me pinyin. But I love art, so I was also learning traditional Chinese writing,...which I’ve now forgotten beyond king, mountain, river, door,...you get the drift. Anyway, ...not meaning to hijack the caregiver Thread. Send the link as a PM if you’d rather.