care givers support guide

I have noticed several people talking about a guide plan, who better to suggest steps to help than those of us who have been dealing with it for a long time. I will start with a few tips.

1. always get copies of all medical records

2. set up a notebook for the records. put in a list of all current dx,lab work,scans and xrays. Keep a record of everything the docs tell you (add a list of all docs and nurses along with their phone numbers and what they are for). Keep a list of all new issues to share with medical staff along with the the results of the issues.

3. I take this with me to all visits to add copies and take notes. I write all weight, vitals and med changes as we discuss it. I dont even have to ask anymore the just hand me copies.

4. add section for diet notes.

5. I always note at least 1 time a day how he has been, this is a big help when family members want more info.

I will work on more but that's a great place to start.

                            Milly

I also take the power of attorney and medical power of attorney documents with us whenever we go for anything medical.

I also request a information release form at any new doctors, medical facilities, hospitals, etc.  This way they will give me any info concerning my husband without a hassle later down the road.

that's a good one I dont usually think of that.

Another one to add is a copy in cd form of all Mri's and scans if you ask they will generally provide one. Again as we normally deal with several docs it is good to have a copy of the last 2 ay all apointments.

Also something I didn't mention earlier is support for you. Family is great but often too emotional in really tough times. If you dont have the means for nursing care check with church members, many times the stay at home mom will donate some time so you can take a moment (or a bath). There is also the other church members who want to help maybe some can help with yard work or repairs, a cooking chain so it's not all up to you. And let's not forget how lost we can get without emotional and spiritual support.

Altough this is hard to do and yes I am guilty of neglecting this myself, Take sometime for yourself to recharge. I try to go somewhere peaceful and usually take my grandaughter with me, we like the waterfall and flower gardens downtown. If I dont do this for myself I find that I become just a little bitter not to mention exhausted. As long as I get a haleybug(grandaughter) fix once a week even if it's her helping make a few meals for later in the week I'm good. Whatever  your recharge is do it, remember you have family and friends who need you in their life or who will just hold you while you cry.

I also found this week how important it is to let him do what he can to help. He is begining to feel useless, this breeds depression, we dont want to go there. I broke something the other day just so he could sit and fix it.

When ever I am away from my wife and son feelings of hope and dread consume me. Balance seems to be the best I can manage much of the time. Being in the presence of a child is so reassuring. My son has no idea his mom has been sick. We are waiting to see if her treatments have been successful (6 months so far without recurrance). Though I am having a hard time keeping myself together, as soon as I pick the little guy up from school, everything is okay again--at least for a while.