It's been a long time since I have visited here. Most.....or so it seems........so many who post here are in earlier stages of this nightmare with their spouses. Don't come back on me for that comment since maybe it just seems that way to me. My husband has declined so drastically in the past year and I am so terribly sad and so lonely in this life without him. I know there will be life after all this is over...........but I also know it will be without him. There is so little left of him now that I am sure he is probably not with me at all. We have been together for forty five years and he hasn't even known who I am for the past two years. I am just so lonely tonight and I am missing what used to be and can be no more. The withdrawals I am having from our life are long and painful. This too will pass and I know I will go on but for tonight.........well........I just miss him clear to the depths of my soul. I would really like to hear from anyone who is in this final stage since misery loves company.
anitalynn I don't think this will make you feel any better. We have been married for 50 years. My husband has not known me for the last 2 years. When I visited him today he could not open his eyes. I put my hand on his chest to feel if he was breathing. There is nothing left of him. To see our once vibrant spouses reduced to a pathetic shell is too much to bear-but we are not given a choice. Sometimes the lonliness is crushing.
anitalynn - there do seem to be more in the earlier stages than even in Jan 2009 when I joined. But there are still many here who are in the late stages, so you are not alone. There seems to be many that have passed on the last few months. You are not alone.
Bluedaze.......Thank you for your reply. I am sorry for the pain and emptiness you also feel. I have often wondered which part of this terrible disease is the worst. I now know that it has two distinct parts. I used to think the beginning was the worst because he knew what was happening to him......and for him that was the worst. I am so thankful that he no longer has a clue. But the other part is me and you and all of us who watch this happen from beginning to end. They reach a point where it is no longer their problem since they are in a different place. But we are still here and we still have to deal with everything that is happening. I don't know about anyone else (actually I'm sure we are all feeling pretty much the same thing), but sometimes.....most of the time......I don't know what will give out first.....my physical ability to do what needs to be done or my heart that is so broken that it's hard to imagine it will ever heal. I just read Groundchipper's post and it breaks my heart and yet I am happy for him that this journey is done and he is now able to go on. God bless him.
Anitalynn, if you ever saw the incredibly beautiful gourds he carves, you'd never forget..(grin)... I don't know what I thought the gourds looked like till he sent us a link. OMG, they are stunning. I had not seen gourds carved like that. He's amazing! Maybe he'll find time to include that link again sometime so you will see too. Don't worry about names on this site. I mix up the names of my two sons, especially when I'm tired. The rule is when I call, and either one can hear me, I mean HIM!!!
Anitalynn, our 48th wedding anniversary was last week; my husband hasn't known me for over a year; he doesn't talk; can barely feed himself if his food is cut up; has to be bathed; is incontinent; and can sometime shuffle his feet and sometimes has to lean on me to walk. He is on Hospice. I identify with everything you said. There are at least five more who are in our stage at the moment. We come here because we have each other to lean on, because we are family here. I'm trying to type while tears flow for Gourdchipper and Frances....
((Anitalynn)) ((Bluedaze)) ((Mary)) I can't imagine how painful it must be when they no longer know you at all, when they are truly gone, yet still here. I always think of ((Sandi)) and I already know I will not be able to handle that as graciously as all of you. Lynn is in late stage 6 with some stage 7, but he still knows me. That is the only thing that gives me any peace now. When that is robbed from us too..... I just don't know how you do it. You all AMAZE me!!! Truly ((hugs))
Anitalynn, you just summed up exactly how I feel... after much reflection on the past 10+ years I too believe the earlier stages were hard because Lynn was still aware of what was happening to him, that made it heartbreaking to witness. But for me, these later stages are much much worse. :(
Reading old posts I see how many people have stopped posting after a time. Do they tend to stop as their LO's progress? I wonder why. Here's inviting all the lurkers with later-stage LO's to come back and give AnItalynn some support!
Anitalynn, your post made me cry and I think I needed a good cry. I am thinking of you and everyone who is further along in this journey than I am. I used to belong to a diabetes message board and they would always welcome people by saying "welcome to the club that nobody wants to join." I think it is even more appropriate here.
Sometimes, I get so frustrated with this site when I have poured my heart out as I just did and then I went to put some words in italic and I lost the whole thing.....the whole thing! But here goes again......
I can certainly understand why there are so many more that post here whose spouse is in the first 5-6 stages. How I wish this had been here so many years ago when my husband was first diagnosed. I had so many questions, concerns, fears and so many unknowns and I had nowhere to go for information or companionship or commoradory except doctors or the Alzheimers Assoc and most of that was much more basic information than what we get into here. No matter what circumstance or problem that we post here, someone or many know exactly what we are saying.
Mary, you and I could exchanges houses and would have no trouble knowing exactly what needs to be done. My husband can barely pick up to eat the cut up food I put in front of him. He hasn't been able to use a utinsil for over a year. He can't ask for or reach for a drink. He can barely stand on his own two feet and can only take a few steps and that is only if I am hanging on to him. He is now totally incontinent and can't take care of his personal needs AT ALL. He can no longer talk except for a few words here and there.
Hospice comes in M-F and gets him up and showers him since there is always a mess in the bed. Being an old lady myself, I just cannot lift him into the shower anymore so thank God for them. On weekends I manage by just sponge bathing him. It's is amazing how we learn to change poopy diapers and do a pretty good job of it. With time.......and God knows we have a lot of time.........we learn to do what needs to be done.
Nikki, you and your husband are not as far along as we are, but you have so inspired me with your compassion and your gentle and loving words. Cherish the conversations that you can still have with him. Hear the sound of his voice and hang on to his words because those are the things you will miss the most. Even though you don't know how you will live through the loss of those special times, you will find that the good Lord will give you the strength you will need to get through it and all the rest that has yet to happen.
One of the gifts that we have been given in order to cope is to cry as it is mentioned here so often. If we could put all of our tears into one place what a lake that would be. We are all in this together and as Gourdchipper and all the others who have made to the other side of this........we will survive and even though we will and must feel relief that peace has finally come to our loved ones and ourselves, we can then know that we did the best we could and we did it out of love and we kept the vow.......in sickness and in health, til death do us part.
forgive me for not posting much lately, I seem to be in my own little world and I don`t have dh home anymore so what is there to say, i just sit at home and feel sorry for myself, i know he is getting the care he needs and i am trying not to wollow in self pitty but it is hard not to so I keep to myself now days, i lurk alot and post once in awhile but like i said i have nothing to say, when the time comes i will spill out my anger and frustration. Gail
Marygail, I'm so sorry you're down. What can we do to cheer you up? What about that advice (was it given to you or someone else?) to set one small, tangible goal for EACH DAY -- so that you can be glad when it's achieved.
marygail what I do might not work for you. I force myself to go out every day. Always meet some one along the way just to say good morning to. When the weather gets cooler (it's still in the 90's) I just walk and let my mind wander. Thoughts just come to the surface and I feel better when when I get home. Of course the evenings alone are hard.
My evenings are kept busy with the boys, then when bedtime comes, I get lonely. That's when I come on here and read, read, read. Then I post. When I finish I go to Facebook and do the same. It's not so exciting, but it keeps me connected to the rest of the world.
After dinner, I usually go out in the yard and work for awhile before coming in and showering. Then I check my e-mail and answer if necessary; check facebook; then I check in here and read/post. Then I do on-line surveys if there are any for the day. Take dog out for last call; then check in here again before going to bed. Sounds rather boring, me thinks!
Dear Gail........I totally hear what you are saying. It is a very empty and lonely place to be. The times that I have had to put my husband in a home although only for a few days at a time, I leave the facility and I feel like.....now what the heck do I do with myself!! I go to the store or the mall and get a few things done. I come home and rumage around until I find something to eat........by myself........and then watch tv, read, or do whatever I need to do on the computer which sometimes is just this. And it's prefectly ok to feel sorry for ourselves. We must because it's part of the withdrawal process.
This isn't the world we have all lived in for what seems most of our lives.......and one we never wanted to end up in. I didn't want to be alone and I know you didn't either. Many say to enjoy that time and enjoy the freedom. Yes, the freedom is nice but I guess it just takes time to withdraw from the life we have known and enter into this life of basically starting over. Yes, we have our memories.......thank God........but we no longer have a living companion in front of us to talk with and share whatever it is we share and have shared most of our adult life.
But I do think the time comes when our will to live has to kick in and whether we like it or not, we have to go on. My daughters will ask me what I am going to do when I am alone and their Dad is gone. I tell them I will be ok but that I know that I will grieve and they must let me do that at my own pace. Then life will just begin to come back in and one thing will lead to another and because of that we will find contentment again. This thought is sometimes the only thing that remotely feels like hope so I hang on to it for dear life.
So dear Gail, hang on to the hope and certainty that it will come in time and that you are not alone.......even though that is a hard thing to do when we sit in our own silence.........but nontheless, it will happen.
This past year has been the hardest of my life. Between placing Lynn, my Dad's suicide, my Mom's congestive heart failure and others things... Hope is sometimes all I have. I found this poem that I read every day. This seemed like a good thread to share it in....
Hope
Hope is an image of goals planted firmly in your mind. When looking at life before you, hope lines the paths you find.
Hope is a well of courage nestled deep within your heart. When faltering in fear and doubt, hope pushes you to start.
Hope is an urge to keep going, for limbs too tired and weak. When apathy stills all desire, hope sparks the fuel you seek.
Hope is a promise of patience, as you wait for distress to wane. When all you can do is nothing, hope pulls you through the pain.
Hope is a spirit that lifts you should heaviness pull at your soul. When torn apart by losses, hope mends to keep you whole.
thank you all for you words, i know deep in my heart i need to get on with my life , he is still alive and still knows me and he needs me but I need him and it ain`t going to happen so here i sit and think to much, i am not ready to get on with my life without him, my dil asked me to watch her 4 yr. old during the day when he is not in head start and i think i may do that, he will be something to keep me going for a good part of the day.maybe he can get me motivated,a reason to get up in the morning. yup i think i will tell her yes.
Good for you, Marygail, sounds like a good idea. It might be better not to pin yourself down for too many days a week for too long a time? But a little boy sounds wonderful!
As I was preparing to leave the nursing home today, I felt this overwhelming sadness. Oh my God, it was like EVERYTHING just hit me. I was thinking about going away without him for the first time on a family trip, the reality of his comfort there, all the emotion of the last week, our dog, daughter, social workers, lawyers, everything. By the time I got to the nurses station I was in tears. They assumed it was just worry over him, and I didn't correct them. They said they already love him and are going to "keep him" It was a nice visit, we spent time in the gardens, had lunch in the dining hall and then I put away hims laundry and we went back outside. Then he was ready for a nap. Still I felt, feel so flippin sad. Sad for him, sad for me, sad for us all.
Dear Susan..........No one knows the broken heart of an Alzheimers spouse.....even those working in these facilities. But ..........we do! We cry with you. The emotions are so deep and so wounded. I looked up the word "sad" in the Thesaurus to see what other word I could use when people ask me how I feel. Here are the words: downhearted, blue, depressed, dejected, unhappy, sorrowful, mournful, bummed out, despondent, down in the dumps, woebegone, melancholy, heartsick, forlorn, broken hearted, glum, woeful, pitiful, tearful, joyless, miserable, out of sorts, tragic, just to name a few. Oh my gosh........they all apply!!! This is not a fun AD world we live in......thinking of you....Anita