Caregivers Support Group

Being a long-time caregiver for my hubby who became paraplegic following an auto accident, I can empathize with you as well as your hubby. My hubby was fairly independent except for occasional accidents as a result of a neurogenic bowel and bladder. His ability to be somewhat independent was lost when he developed Vascular Dementia. There are so many horrible symptoms of dementia (paranoia, delusions & hallucinations) that nearly put me over the edge. I am his sole caregiver except for an occasional hour or two of relief from our son. I was a nurse so I am used to caregiving but I use to get an occasional break during the shift for lunch and my shift ended after 12 hours.

Does your hubby work outside the home? Do you need someone to be with you 24/7? Do you get to do things together that are pleasurable like out to dinner or a movie? Does he have any hobbies that might get him out of the home for some alone time? I do know that one of the most difficult things for me was never having any time alone. If I was reading or watching tv he would call be a half dozen times in the middle of a show. I think the worst though was when he stopped appreciating everything I do/did for him and started being very nasty to me even though he never wanted me out of his sight. He would say I was a lousy nurse and accused me of sleeping with neighbors and keeping men in the house upstairs. I could rationalize and say it was a part of the dementia symptoms but that doesn't help when you are doing bowel and bladder care and then being told how awful you are.

I think feeling appreciated is probably the most important thing. I don't think that means thanking your hubby every day for helping to take care of you. I truly believe of the marriage vow "in sickness and in health" but it doesn't mean it isn't difficult. Believe me, a caregiver can sense when it is appreciated and when it is just expected.

My very best to you and your hubby........hugs & prayers



I think it is kind of like comparing apples and oranges though since I am not certain but I don't believe MS effects you cognitively.

thank u so much 4 your comments.
yes, ms patients do get cognitive issues, some worse than others. my problems r poor- balance, left foot drop and left arm/hand weakness,
yes we do fun activities together and i'm very aware tthat people need their alone time. i'm alone all day while he's at work. i've looked into home aide for chores. he's fine doing xtra and i will get someone to clean house periodically. i'm retired from the medical field so it's been an adjustment to be at the 'patient' end. i get frustrated when certain chores don't happen fast enuf.
i do tell him i appreciate him and all he does 4 me. he has his garden to work in.
we have home assistance services here that insurance will pay on when u need a break and your mental health would b improved if u used some assistance..u have to take care --of u..
your husband sounds like my dad and how he treated my mom..verbal abuse, etc. so i'm familiar with that.
i wish u luck with getting some assistance. maybe it's time he is in a nursing home or assisted living.

i am so impressed with you being out here trying to take care of your caregiver. wow!! as a husband and caregiver - that's not what i lived for the first 10 years. so your post really got to me ... i am just wanted to chime in .. that i think you are pretty amazing .. looking out for him as well.

the quick blurb ... wife = dermatomyositis - plus plenty of other challenges ... only doing better in last 1 year after recovery from full hysterectomy. kids (age:10,12). wife home full-time .. kids very active :-)

my brief husband/caregiver story ... it took me forever to just begin to understand that i can not "fix this". full-time job, taking care of family, too many doctor's appointments, driving the kids to all activities, coaching baseball/softball, paying bills, yard work, taking care of house, cooking, food shopping ... it was overwhelming ... . but it was my own doing .. my own "fix this" mentality - that i can handle it. Also watching the life of the kids in the "normal" house down the road .. and trying to mimic that for my own kids ... it's alot of pressure.

the good news ... it got better. to start - i went to the book store (coffee and book) for a few hours ... every couple of months ... after the kids went to bed (that was my "me" time). I like Yoga - have a few DVD's ... been a life-saver for me ... 20 minutes of gentle exercise. i drive different routes to work ... break up the routine.

most importantly .. i finally started to get it .. i can't "fix this". took almost 10 years ... the more i just let go - the better we get. my wife wanted a housecleaner, i have someone plow my driveway ... for a long time we ordered groceries over internet (www.peapod.com) in my area. kids learned how to use the microwave - and "lean cuisine" frozen meals is dinner on baseball/softball/dance/tae kwon do nights ... the more i learned to let it be (and i am very stubborn slow learner ..) the easier it got. that included learning to let my wife be with how she was feeling that day ... learning that i could not "fix it" was painfully difficult lesson for me.

some thought - at times, i will listen to internet radio (www.hayhouseradio.com). everybody has got "their story". i could listen in the privacy of my laptop and headphones. nobody needed to know - sometimes it nice to hear that i am not alone in what the day brings.

another thought - i am a reader. got a Kindle. can password protect it ... so i can get and find books that i think will help me - nobody needs to know. Ipods - Ipad etc ... there is so much to listen to - and read ... and it can all be very private. as in my limited experience - most husbands are uncomfortable in reaching out to other people for help (stubborn breed that we are ... took me very long time!!).

you are a wonderful person looking to help your husband ... i am sorry you are going through challenges. in time, i believe he'll do fine. i wish i could offer more .. you both are in my thoughts and prayers.

- jjw

jj-thank u so much for your helpful comments. i'll pass them on to glenn..u also helped me understand better re men and the stubbornnss, fix-it thinking..take care.