I just now read some of the discussion about "treatment of pneumonia" and am still so amazed that others have the same exact scenario's that I face everyday. It just seems as though normal everyday life goes on all around us when we walk outside our doors and into the real world. Sometimes, I look out my windows and see couples walking together or sharing chores in their yards or.........could go on and on........and I just ache for those long ago days. I feel like everytime I write something here it's always sad or poor me........but, I do think that too is a feeling we all deal with. My husband is right on the edge of not being able to stand on his own two feet. He can barely get food to his mouth. He can't get out of bed without help. He can't sit on the toilet without help and sometimes doesn't make it to the toilet since he can't tell me if he has to go. He no longer watches tv and the day was he wouldn't have missed a golf match or basketball game on tv. He can't talk or carry on a conversation that can be understood. He can't see let alone focus on a picture. He can't remember my name. In this journey we are all on, it was easy in the beginning to say that I would do whatever I could to see he lived as long as possible. But, oh how I have changed my mind. I too had several talks with our doctor about life prolonging things such as anitbiotics and after many years have now sadly come to the decision that no sane person on this earth would want to exist in this AD world. I too have said so many times that I pray that something takes him before AD claims what little is left of his life. Pneumonia would be a gift sent from God. Going back to the topic I started with.......I do feel so alone here in my little corner of the world but since I have found you all, I know that is not true and being able to write this and receive heartfelt feedback is also God sent. So thank you all out there and please know that my heart is with all of you and I wish you strength and peace.
Anitalynn, My husband is not at the same point as your husband, however, I feel the same way. I always think of what he said before his mother passed away from dementia, "If I ever get in that shape, just shoot me" so sad. I too believe this message board was a godsend for me. I really don't have anyone to vent to, so unfortunately for the other board members I come here.
Kadee, thanks for once again making it ok to just vent. I went for over 11 years of not talking to one single person who knew what I was dealing with. That's not probably totally true because some would say that their grandmother or grandfather or their friends loved one had AD, but I never had someone I could talk to whose husband or wife at a young age developed AD. None of it is good, but having a place to go that deals with the trials and errors and feelings of a spouse makes it a special group that you have to be in to understand. I wish we could all be in a room together and just have a hug and look into the eyes of those who see the same thing in our eyes. This is the next best thing and God bless you all.
I feel for you anitalynn and like you said we all have the same (but different) situations. My husband is not as far along as yours but I realize things can change overnight.
My husband fell out of his Craftmatic twin bed this morning, mattress and all. He has trouble getting his feet out from the covers to get up and also trouble covering his feet when he gets in bed. He calls it " the covers eating him up". I am not sure how the mattress got involved. Anyway, he was not hurt and managed to get on his knees and with hand assistance get up. I have removed his top sheet long ago and let him use a quilt and affaghan for cover but he still gets tangled up sometime. I think he may panic.
I also do not think husband would want to be kept alive when he declines to the "not knowing anyone state".
Imohr-my husband has been in the "not knowing anyone state" for years. He is not being "kept alive" as he is healthy. I am living his worst nightmare and there is nothing I can do about it.
Imohr....You used the words I have said a thousand times......We are living his worst nightmare. As far as being healthy, that is another part of this nightmare in that for most of the duration of the horrible AD, the body itself is fairly healthy. It's just when the brain can no longer tell the rest of body what to do that the unhealthy part starts whether it be falls or pheumonia or whatever. That's when we have to decide how long we want his "worst nightmare" to linger on. No one wants it to linger on but whether your mind and your heart are in agreement or in conflict is where in lies the ability to make the decisions that need to be made. The biggest heartache of all of this for us is that there is not one thing we can do about it.....as you say. When a person is in the very final stages is when we do have a little bit of control in the sense that we can make the decision of such things as antibiotics or not.
Anitalynn, I hear your sadness and helplessness watching your DH as his body fails him. I seem to want to hang on to the hope that we are given to be caregivers not by choice but by some higher authority in this world with a purpose in mind. I myself, now find i have much more compassion and cry at sad things i never would have before. my perception of life itself has changed and I see that one more day of life is not a 'given' but an opportunity to learn or share something new with a person who is in need. mainly that is my DH now -He looks at me with such a trusting face at times that just makes me crumble as i know i am his only source of familiarity and security. I can only imagine how difficult it will be to watch mine crumble in body along with his mind. Its such a relief like you say to have somewhere like here, with good people who can offer advice or a thoughtful word to help us get thru the tough times ahead. I hope you are feeling better today -try to get some time for yourself- out of the house if you can manage,- and give your husband a hug from me and a huge pat on the back for yourself-divvi
Divvi, you are so saintlike, and hope I can learn to adopt your philosophy. It is so hard to accept each stage of my DH's diseases ....and most of all accept that he can't help his behavior, and no matter what I say or do, it is and will be ineffective. I was blessed with the most accepting and loving DH and must remind myself how lucky my life was before I was blamed for my caregiving. It helps somewhat to remind myself.
Divvi, I agree with what Marcia said about you. I believe that there is a higher purpose for circumstances in our lives, too. I know that God is the ultimate care giver.
My husband looks at me in that very trusting way, too. Sometimes I wonder what his life would be like if I weren't here. Such a heavy responsibility.
my my, by no means 'saintlike' Marcia and Evalena! more so like 'satanlike'. ha! I have my days, lots of them where i completely blow like my mother earth's Mt St Helen..they are becoming farther apart but i can lose it bigtime right along with the best of you! i actually cut a shirt off my DH when he would not take a bath once. snip, snip.HUGE pair of sizzors-.and dared him to say he wouldnt take a bath...i think the sizzors did the trick!! looking back he may have thought i would continue to cut stuff off him..HA! awwww.. now how mean was that?? anyway, honestly,i do appreciate that anyone would attempt to associate me with a word like that though. we are in a daily struggle in this mess together, and all we can do is support and sooth those who are in need among us, and that includes ourselves alot of the time.. divvi
and PS..sometimes you just have to disconnect the button that allows you to hear or see the difficult changes our loved ones are going thru. i keep telling myself there is nothing he can do today that will compare to the hurt i will endure when he takes his last breath. so in a strange way everything else seems slight and irrelevant for now. try to put your pain and hurt in perspective and let go --let go-- let go of these negative feelings ...dont dwell on it, tomorrow will bring a new challenge and you must be ready. divvi
divvi you amaze me. Your words "nothing he can do today will compare to the hurt I will endure when he takes his last breath." Sometimes I read things here that just jolt me. That was one of them!! Thank you for it......I needed that thought to keep in my heart and my head.