6 replies to this topic

[MsLucretia]

Just saying hi I am a new member, L4 incomplete, in chair since june 05, live with my partner/caregiver since june 07. One main concern right now is That I am high maintenance and my P/CG is completely stressed and very isolated. I am in counseling, and we do some joint counseling, but she needs some one on one herself and I can't convince her to get help and support.
She gets scared and freaked out by my spasticity and pain issues and anticipation of me falling from bed, which happens from time to time, and her usual reaction is yelling and swearing. This does not help after a major bout of spasticy or a fall, lol.

[kdenon01]

Being a caregiver can be very stressful and being a partner of a quad/para can also be very stressful. I am my husband's full-time caregiver, and sometimes I get frustrated and worried.

The best advice I can give is maybe just not let her be a part of your care. It sounds like you have tried counseling...and other than that I'm not too sure of what to tell you. If she would like some support, this site is a great way to meet other people who are in her situation.

Also, she needs to make sure that she still takes time for herself...going to the spa, spending time with family/friends, etc.

[qbounce]

Maybe she can just take a few days off a week, or a few hours off each day. Anything to give her the time she needs for herself.

I hate to say how MANY relationships end post SCI due to stress, worry, fear, and depression for loss of ones self worth.

[sjean423]

Having partners as caregivers isn;t usually the best thing. I know every injury is different, but how much care do you need at your level? I am guessing it isn;t a lot, is there a way that you can get a pca for that, or find ways around it. That might lessen the stress a lot.

[Sammie]

I am P/CG and also in Oregon. Immediate solution to the bed issue is to add the bedrail that fits between mattress and boxsprings (just slides in and out easily) and throw a blanket over it for padding to save cost. If you do have the spasticity occurance you will more than likely be blocked enough until things calm to avoid falling. I found one in a store that sold beds and it was in the section for kids moving from crib to twin bed for the first time to keep them from falling. I tried it and it worked well and now my friends cousin who has the same issue as you is using it.
Regarding your partner's isolation- I agree that she needs to talk to someone. To get it started why dont you open an "account " on this site for her (she can always change the password) and tell her to feel free to ask questions, make comments and basicly read about our lives, how we handle things etc. She can get alot of info from this.
If she does not find a release it will continue to affect your relationship- sometimes just understanding better is the first step. I have asked some of the most obvious questions in hind site, but at the time I really needed to hear the answers and these people were here for me.
Best of luck and hope things get stronger and calmer for you.

[Sammie]

sjean423, on Sep 20 2008, 07:18 PM, said:

Having partners as caregivers isn;t usually the best thing. I know every injury is different, but how much care do you need at your level? I am guessing it isn;t a lot, is there a way that you can get a pca for that, or find ways around it. That might lessen the stress a lot.

SJean, I dont agree with your comment about partners completely. In some cases that may be true if they dont have the emotiona or physical ability to do what needs to be done, but in most cases the fact that someone who is caring for the person also happens to love that person can mean alot and provide alot that a stranger cant on an emotional level.
In my case I do most everything my partner needs except b/p by his choice and he has another relative who lives on the same property do that even when I am there (we live 250 miles apart right now). The reason for that is that he wants this last part of his care to be my responsibility after we are married so that we can just focus on our relationship even though I dont care. I still do lots of other things for him in the caretaker catagory that are intimate, private etc that he would not want a stranger do.
In some instances I think you are right but caution against over generalization. Just a thought

qbounce, on Aug 23 2008, 10:00 AM, said:

Maybe she can just take a few days off a week, or a few hours off each day. Anything to give her the time she needs for herself.

I hate to say how MANY relationships end post SCI due to stress, worry, fear, and depression for loss of ones self worth.

I agree- she needs to do something for herself. Take a wak, have coffee with a friend, join a class etc. If your care is her only focus she will obsess, fret and become short fused- oh wait, she is....

[JesseB]

hey ms lucretia! i'm from oregon also. i dont knwo much about the caregiver stuff but, jsut wanted to say hi!

btw, i live in a little town like.. 20 minutes from salem