Although I have access to support groups in my area, there are many gaps these groups can not fill. This is not intentional and they try but these are 'feelings' that I experience. An 'aloneness' that the most caring friend or family member can not know.
I am a widow...but not a widow. I am a wife...but not a wife. I am a partner, but not a partner. All at once something happens that I need to discuss, need my spouses opinion on or just a shoulder to cry-on, when there is only ONE shoulder that will work.
There are happy times that I know he'd laugh at and really enjoy...and now there is NO response. There are the grandchildren he doesn't remember, and some he'll never know.
There are the plumbers, electricians, service people, and children that must be dealt with...and that very important person in my life is there--but NOT there.
There are the TV shows, plays and sports activities and meals that are not near as much fun alone or as an 'extra'. There are decisions to be made that no matter how MUCH has been discussed, have never ACTUALLY been faced.
There is the time to sign the directives for nursing homes, doctors, or hospitals that no matter HOW MUCH has been pre-planned NOW I have to put my name on that line....
I have experienced some positives much to my surprise. I CAN make decisions, I CAN deal with the plumber, I CAN be an advocate for my husband's rights as well as my own and I CAN love him anyway. But most of all---he is in NO pain and in his own world he is reasonably content and for that I am eternally grateful. His life has served a purpose and will continue to do so...
My advice is to ask questions, talk, yell, and take advantage of whatever is offered to you. I have to keep remembering that my life must go on...for all the reasons he'd want it to and if I don't, my physical health will also suffer and then what good will I be to him...or to anyone?
Remember...you are not alone and many people care.
Good luck from someone who is there...
This is Mardi and Bob