General Disability Lifestyle

" Who changes the light bulbs ? "

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" Who reaches that light switch ? "

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" Why is that outlet behind the chair ? "

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" Why did they build that window so high ? "

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Do Not make the house so I can't access what I Want without help please !!

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I wanted to make myself a can of beets the other day, just open that up, put it into the microwave and have a nice little lunch... could I ?? Noooooooooooo.... was I upset ?? Yes as a matter of fact I still am upset. My OT was here for 6 weeks teaching me how to do all this stuff and learn to feel better about not being such a burden and now John seems to not want to help by putting things where I can reach them and do them myself...

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Maybe seeing things in his eyes, he worries he won't be 'needed' if I can do these things myself... I understand his fear, but I have told him I need his friendship so much more then his cooking skills... I need him to do the things I Really can't do on my own... I can't cook on the stove, it's gas and I don't much care to catch on fire any time soon !! ... I can't take nailes out of wood and I can't mow the yard or rake up the fall leaves, I can't do a lot of things nowadays, but I Want to do what I know I can.... I think maybe he is fallen into the roll of care taker so much, he forgets there are other things we need done. OR he doesn't want to do them so he puts them off until there's a crisis. Ughhh.

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So my question today is this :  How do we explain our needs to help ourselves without making our loved ones feel unwelcome ?? 

Well Sister.......I don't know about your man............but most of the men I have known.......don't take to hints very well......I had to be very literal in what I wanted .......or didn't want............so.....I'd suggest.......after stating how very important his just BEING is to you......I'd then list the things I'd like help with........and the things I wouldn't like help with...........one.......by ....one...........maybe even ask him to pretend to be you for a day...............and see what he can and can't do............he sounds very willing to please........that's a GREAT beginning............best of luck to you..............peace and love........Norma

Hi.  I don't have all of the magic answers to this very good question, but I'll share what I know so far, since this topic is basically all my husband and I have talked about all summer. 

 

Often, at the beginning, my husband/caretaker would say to me: what would make you happy, tell me, and I'll do that.  And I thought about it for a few days, and then I knew the answer.  I told him: doing things myself makes me happy.  It's always been like that my whole life, and it hasn't changed now.  So, the less I can do myself, the sadder I'm going to be. 

 

Since that day, we've been figuring out what things are on his new list of things that he does, and what can stay on my list.  One thing that's been incredibly helpful is lowering as many things as possible.  I put longer chains on the ceiling fans, so I can still adjust them.  I bought, and my son installed Light Switch Extenders (many kinds are available on the internet) for light switches that are too high or are behind furniture and I can't reach.  Now I can reach all of the lights in the house.  We lowered the microwave onto a stand next to our kitchen counters, we even lowered all of the plates and glasses to another shelf on that stand.  After several months of reminding him, I've finally trained my husband to put my food on lower shelves in the fridge/freezer and the pantry.  I also bought what I call a "grabber", being one of those long sticks with pinchers at the end that you can use to pick up something off the floor or to get things out of tall cabinets.  We hardly use our tall cabinets anymore, but on the rare time we do, I can use the grabbers. 

 

If John doesn't want to lower these items and move everything around for you, you might need to call a friend, or get that OT back for a day to help you.  I'm actually rather surprised that the OT didn't suggest rearranging when he/she was there for 6 weeks.  I've never had an OT myself, but when I became disabled, rearranging my house was the #1 priority. 

 

And, to John's consolation, you're right, there are things you can't do, like rake leaves, etc.  There will always be things you can't do, so I can't see how he could ever run out of things that you need him to do for you. 

 

When we first started modifying the house for me, we thought it would be enough, and I would be totally self sufficient.  Far from the truth, I'm afraid.  He still has plenty to do to help everything get done around here.  But, on the flip side, I feel satisfied now, because I'm doing a lot, I can use the crock pot or microwave or oven or toaster oven and fully cook a meal for the family.  But I still ask for help with setting the table and loading the dishwasher, just because those things were my sons' jobs anyway.  I am happy to know that I could do them, but everyone else is learning to be good workers as well.  So, after about 4 months into my adjustment to wheeled life, I think we're finally starting to reach a happy balance, in which I can do many things through modified tools, and my husband and kids feel wanted and useful because there is still PLENTY of things they can do to keep our home running and clean.

 

One thing I should mention here is that my husband told me that it's easier for guys to help physically, by doing things, than emotionally.  He said it's much harder to care for my emotions than it is for him to do a lot of work for me.  They're just built for work, I guess.  So, even now, many months into this, I'm still trying to make sure I can assign something to him, or ask him for help now and then, to help him feel better.  I don't mind doing that, because I know inside that I don't NEED him to do those things for me, just that it would be nice.  That way, I feel good knowing I could do those things when I want to, and he feels good because he thinks he's needed.  Of course, sometimes you can just go and do those things for yourself as well, for you.  :-)

 

I recommend telling him what you feel.  Tell him that you, or anybody, needs to be able to work to feel good, it's a God-given right (even in Ecclestiastics, there's a verse about that, right after the Time for... section).  It will be a compromise, because you will do a few things, but in return you will feel so happy which I know he wants you to feel, and he will still have LOTS of things to do around the house and yard.

 

If you'd like suggestions on grabbers, light switch extenders, and the like, just let me know.  You can get an automatic can opener, or modified almost anything.  There are entire websites with modified devices like this.  It's a gold mine.  Hang in there!  I know you can do it. 

 

Hello Sister-What works well for me is being honest in explaning why I need certain things left at a certain height or within my reach. You are just trying to communicate your needs and become as independent as possible.

 

Stay Strong

Vinny

Thank you all so much finding my post here...  I think with the up coming move, not being able to really help get things packed and my own stress about How things should be packed, I am just in a mental panic about all this.  I figure once we get moved we can sit down and talk about my role here, other then the person sitting behind the computer blogging or playing games on here... I want to be Part of this relationship, not just a lug and I feel a lot like a lug lately...

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I posted a thing on my blog tonight about WY and my flying ideas come this time of year, I've always had a need for change in the Fall and maybe that's all part of this stress I'm putting upon myself.  I dug out my journal and will give that a try at bedtime so I clear my mind before I try to sleep. And while I don't like the idea, I think I'll find out about getting back on some medicine to help with the anxiety for awhile until we are settled down again around here. I highly believe in getting help when needed rather then flipping out all the time, I think God gave us smart people to be doctors for this very reason !!

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For now, I think a book and some silent time is really needed. Thank you again, Blessings Lisa Catherine

 HI SISTER , GOOD TO SEE YOU....... I WENT OUT AND GOT THE CLAPPER COST ME TWENTY FOUR DOLLARS AND CHANGE  , WELL IT WAS NOTHING BUT CRAP AND PROBLEMS AND I RETURNED IT TO WALGREENS AND WENT TO TARGET AND FOR TEN DOLLARS I GOT A LIGHT REMOTE CONTROL ........WORKS LIKE A GEM  ! ! !   HOPE YOU ARE FEELING BETTER    BLESS YOU   RAINEY XO   

 

Hi Sister Lisa Catherine, I was thinking how this move you're anticipating could be the perfect time to arrange the new kitchen the way you need it to be. Gives you something to look forward to. Maybe you could unpack the things you need on your level and leave the rest for John to unpack and put away. I'm fortunate to have a CNA who understands my need to do as many things for myself as I can. She also understands when my fatigue makes it so I cannot do those same things. Then she helps me if I ask her. Of course, she gets paid for this, but it's good to have someone understand.

I know from living with my Mom and Dad, my Dad has a harder time seeing me struggle or in pain. I think it's a guy thing. Maybe from growing up reading all those Prince Valiant and Superman comics books.

bblessed,

pambe

 Actually being responsible I suggest you researh

Reach Extenders Lots more facts suggestions can be found at Web MD and other sites all is not hopeless.