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So quiet here today...thanks for stopping by Kats. Lots going on in my head but I just can't get it all worked out. Probably never will. Very frustrating for sure. I am one tired person as far as riding this roller coaster ride of emotions..I just want off this ride. Until then I guess I will have to look for the good and hope my DH can also see that good.
Just stopping by to say Hi. I understand what you are going through.
When my Dad had cancer, my Mom tried to be accommodating. And one day, my Dad got a little snarky with her and I could tell she was hurt. After my Mom left the room, I reminded him that she was trying so hard to make every day happy for him. I also pointed out that when he was gone, his pain would be over. And every single day after that, Mom would feel the pain of his absence. He needed to go out of his way to make sure that Mom's last memories of him were happy ones.
I made him cry and I have no regrets. He approached Mom with more kindness than I had seen in a long time.
Don't be afraid to speak up. You can't change yesterday, but maybe . . . just maybe, you can change today.
Miss NM.. thank you for speaking up.......the designated patient needs to remember that the caregiver/spouse has feelings too.......and they are going thru something together. There are times when each person needs to be there for the other and always to be mindful of the others feelings.
I am glad that you were there to speak up for your Mom.
In just a few words Miss NM has said so much--I wish you were here. I am so afraid of hurting anyone especially my DH and yet he hurts me daily. I am so disappointed in my self-confidence and have to wonder what I think of myself!? Obviously not much. I don't know what changed or what happened to me but it sure isn't good. For some reason tonight I feel angry...upset and very unsettled in my situation. I suppose it happens. I just would now like to get my dinner dishes done, make sure my animals are set for the night and fall asleep in my chair.--escape.....I just feel a desperate need for that tonight. So good night everyone..see ya'll tomorrow.
Cyn, the best part of your last post I read was "I am a survivor and will make it". I saw my SIL go through the same things you are dealing with now. Your DH's moods and emotions, words and actions are part of this disease. They say and do things totally uncharacteristic of their normal selves. My SIL was on the verge of total collapse from trying so hard to please and care for her DH that one day she simply told him that it was as hard on her watching him go through this as it was on him having to endure it. She said "I am doing the best I know how to do for you. You won't let anyone even see you like this except the doctors. And I am under such emotional stress knowing I'm going to lose you but still doing the best I can to take care of you. It isn't easy for me either but I will care for you as long as I can get out of bed to do it. So don't say things that make me feel bad. I feel bad enough already and will have to eventually live without you with me. That isn't easy to think about. Your pain and sickness will be over but I might live for years wandering if you thought I didn't do all I could. Please don't make me feel like I didn't." My SIL is my wife's identical twin and they are very close and tell each other everything. I listened in and know these were the exact words she told my wife. She is a survivor also. And although she misses her DH she has excepted reality and enjoys her time with her son, his wife and grandkids and family and friends. And by the way, her DH understood her words and realized it was hard for her too and his attitude changed and he tried to think of her feelings and things got better in that respect. The only good thing with his ALS, if there is such a thing, was that he had the fast progressing kind and instead of the normal life expectancy he left us a just after 2 years.
Robhu, you hit the nail on the head--thank you for helping me to know others have gone through dealing with this kind of personality change. Last night was bad again....I have been sticking up for myself but I am not sure he even hears me. He is so angry and scared. And then when we go to bed he wants to cuddle with me---I am so hurt that it is very hard to be close to him sometimes but I do anyhow because I know he desperately needs it. Guess I have to put those hurt feeling behind me and learn to let what he says go in one ear and out the other. That is hard for me to do. From what I have learned many people dealing with ALS who are caregivers go through something like this... It sure can make a persons life miserable sometimes. I really really am trying to do my best I'm just not sure what it is he wants--except to not have this disease and I can't do anything about that. I hate it when I wake up feeling sad.....
Hello cyn and cyn team supporters. Cyn I feel your pain. All your emotions are valid and come with the program.
While on vacation, one of the elderly ladies we visited had a husband with alzheimers. She and I sat at the table at the reunion and she layed it down for me!! She was so wonderful and so straight up with all her advice. She was telling me her DH has alzheimers and how she takes care of him.
We went through all his behaviors and she held my hands the entire time. She told me to get into an alzheimers support group. I am also overwhelmed here. Just too much to do and no energy to do it.
So glad you started this thread, it has become my support group too. Even though I mainly lurk around in the dark shadows!!
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Until then I guess I will have to look for the good and hope my DH can also see that good.
