Have you ever wanted to shout out to family and others " hey! What about me?? Well I would love to ! Family come and take DH on an outing, caregivers come and do things with him. I know it is nice to have that break from him and I really appreciate them coming, BUT, no one ever says " Bob will stay with Dad and how would you like to go with me to dinner out or a movie?" It never happens!! Oh how I wish it would!! Am I the only one that feels this way? I know that I am conversation focused on my caregiving role, so I am boring, but how will I have other things to talk about if I never get invited out to something different then home care?
I hadn't thought much about it until you brought it up,Jazzy. DH always gets B'day cards from Son and his family, but I never do. Mother's day came and went with out a card or call from Son' or his family,they all showed up on Father's Day.Now that DH is in nursing home, they do visit him fairly often but don' think to stop and see me(3mi.from NH). One Granddaughter does call me but not our son or his wife. I figure I just don't exist to them and that's OK with me.I am glad they do pay attention to my DH.Chalk it up to ignorance Jazzy, someone on this site said if you don't exp ect anything you won't be disappointed,good advice.
I was shocked that once Dado got this disease and I was caregiving, how unloved I felt! I mean, I thought I was a fun friend and all, and the calls just stopped and of course any offers of help were almost nil. It went through my head that I was not as loved as I thought I was.
But there are a few precious souls, and now, that I am in a different phase, I can mostly discern who they are, and pick and choose.
Jazzy - good point. I wish I could just leave for a couple days and spend time with childhood girlfriends I connected up with after our 40th reunion. I say a couple days cause they live a days drive away.I guess we have to be happy with the tidbits we have and pray that when this is over, we still have time left to laugh with others.
Jazzy - I count myself lucky when one of the kids does come up to spend time with their dad. In the beginning it was going to be a time off for me, but since they don't arrive until early afternoon and we live 30 minutes from the nearest freeway, there isn't much time for me to do anything as the girls have to leave the next day to go back to their family and work on Monday. I'm very glad that they do make the effort to come 2-3 times/year to see their dad and we do talk often, but it doesn't give me any time off at all, in fact, I end up cooking for 3 or more instead of just the 2 of us. It is, however, a nice opportunity to visit with both of them for me, too.
So, I say, if they DO come up and take your husband on outings willingly, why not just ask them to arrange an outing for just the two of you with one of them left back home with dad? I discovered long ago that what seems patently obvious to me hasn't even passed through their mind. Or, you can decide where you might want to go with one of your kids and you can set the whole thing up. Be proactive, it's better than nursing hurt feelings. I think we women are most guilty of expecting others to know what our needs are by osmosis or something - "they should just know". Any therapist will tell you that they don't know if you don't tell them.
And this advice is worth exactly what you paid for it
I'm 58, so I used to be able to imagine that someday when all this was over I could have my life. Then I had a mole removed this March that turned out to be a melanoma. They almost surely got it all, but I no longer feel the same confidence about my health. I do take some time for myself. Sometimes I am happy doing things alone or with my college-age kids, but I do have a few friends who will do things separately with me and with my husband.
If I had 2 years to live I might insist that things be different, but when it probably won't recur I don't feel in a position to say I'm going to do what I want. A friend said that in a situation of knowing his future was uncertain, he appreciated the little things more. I'm going to try to do that more.
It seems that as caretakers we are, for the most part, neglected. People will inquire how our spouses are doing, but fail to ask us how we are doing. Well, life is wonderful thank you very much... I am cruising the "Good Ship Lollypop"? NOT!
I echo Coco...I have never felt so unloved. Their true colors are now apparent. A few true friends are still here for me, but the "fair weather friends" are long gone.
I'm happy to hear that I am not the only one who feels so lonely and neglected. It's great that some people will come and take DH out but he is well cared for and has lots of people who are here to care for him and entertain him and that is good, but if I am not cared for and if I am lonely and feel neglected then soon I will not be able to do as good a job as he needs. I will become depressed and angry and resentful.how will that help him? They will not take him home and care for him as I do and I can be sure they will fade into the land of " I' m out of here" as other friends and family have done in the past. As soon as they find out that it is not just taking him out for a walk or a coffee then they will be gone. Caregivers can only do well if they are treated with love, concern and respect. So many caregivers need so much more then they are getting and the sad part is it is what they expect. Caregivers don't demand love and care. They just keep on doing and caring. It's so sad. We just don't demand what we need to do a good, loving care of our LO. It gets so lonely. My heart breaks for so many of you who cry out for the love and care you need to fulfill the loving roll you have taken on. You are awesome. My DH will soon be going to LTC, his choice and I wonder if I could carry the load so many of you carry each day for so many years. It has been eight years for us but he has been able to care for himself except for the behaviour problems. I'm sure I would not be able to do it much longer.
Yes, I believe most of us here are very lonely and neglected. I never thought that I would be in this position. We are in a unique position...not widowed, not really married, nor divorced...a class all our own. Technically, yes, we are married, but only on paper. We have none of the benefits of any of these marital status
I believe that you will do very well once your LO goes to LTC. You will find you are stronger than you ever imagined! We are survivors!
Thanks Lullie I just tucked DH into bed and kissed him goodnight. Soon he will not get tucked in with a goodnight hug and Kiss nor will I and that is so painful. It is his choice to go there but it is so painful for me to not be able to take care of him, but he feels this is best because , and I think he researched his bV and knows how it will be for us , that I will not be able to handle his aggression and he may hurt me one day. It his final gift to me but it is still really hard. This damn disease takes it's toll again. It's never going to get any better as long as the autopsies say death by something other then dementia. There is then no statistic strong enough to push for research. Maybe one day!! But that will be to late for most of us! I guess I am just having a down and upside down day. Thanks and hugs Lullie!!
I can definitely relate to the comments on this thread. There are times when I feel there is a little kid inside me jumping up and down saying "What about me, what about me!" I have a dream that someone (preferably family) will someday hand me an envelope with information about an all expenses paid trip that has been arranged for me. However, I don't think that's going to happen.
Lately I've been feeling very lonely and neglected as well. It also seems that all of the disappointments I've experienced in my life have floated to the surface and I just cry at the drop of a hat. I'm remembering a lot about my childhood with a retarded sister and have cried remembering the challenges facing my mother in finding the right education and care for her -- sometimes I feel like that's exactly what I'm doing for DH. Also crying about a lost love before I met DH, our baby who died and my parents who have been gone for several years, as well as the loss of my marriage to this crazy disease. I think it's time to ask for anti-depressants.