I visited DH at the nursing home the other night. He seemed groggy again and totally out of it. The last couple of visits have been like that. He is always in the same spot in a chair in the dayroom (totally immobile now) I talk about the kids, what's happening with day to day events, etc. But I can't even tell if he hears me or processes what I'm saying. I generally get no reaction. He doesn't look at me. It's like I might as well not be there.
I wonder sometimes what the point is in going. But I feel like I need to go. I don't bring the boys anymore. It's too painful for them to see him like that. He can't talk to them. I want them to have good memories of him when he could communicate with them and respond to them being there.
Last Saturday, was our 11th anniversary, but I didn't remember until that night, when I was driving back to pick up the boys after getting the taxes done. I had visited DH that morning, but I didn't even remember. I cried when I realized I hadn't remembered all day, even when I saw him. It was awful.
At my lowest, I wonder if I ever really knew him. And I wonder how much this horrible disease (I now suspect FTD) affected his personality and behavior over the years.
But I miss him and I feel so alone at times, even in a noisy house full of kids. I miss talking to him. Even the stupid arguments we used to have. I miss the affection between us. I wish I had shown him more. All of this seems so much worse now that Spring is in the air. I feel like I feel everything so much more acutely this time of the year. Do any of you feel that way?
It's been a stressful week at work. And I keep getting updates from Medicaid that raise the Patient Pay amount. It started at $89/mo. and now it's up over $500. It says our income went up, but the Social Security only went up for a cost of living increase in Jan. It hasn't gone up since then. It's like they're pulling numbers out of the air. I've gotten 4 or 5 notices already. At one point, it was $97, then a couple of days later, a notice for almost $500. The nursing home bills based on what the latest amount is. I've got a hearing pending. I'll have to follow up on it tomorrow.
Hugs to you...Kelley, and no you are not alone. Lonely is a word that I expressed last night. I feel like I am a visitor in a foreign land, not knowing the customs, the language, or the people. I am a stranger in my own house, and despite the family that surrounds me, I am still alone. Yes I have children close by, grandchildren who make me laugh, a brother, an aunt and my mom, but I am still so so alone. I am grieving my ended relationship, and trying to accept the fact that it is over, despite the fact that my wife is still with me. Hang in there....you many find happiness in the most unexpected places.....hugs to ya
kelly feel my arms around you, i just placed my dh and the lonelyness is setting in, i miss him so much but have to keep telling myself to stay calm, need to take care of myself, sounds like you have some wonderful kids to take care of, think of them,keep the memorey of him happy ones. i am sure i will get overwellemed at time and yes i already miss our stupid arguments, and giving a hug as he would walk by me, a little kiss to make him happy, i had a hard time to do these things when he was here now it seems so stupid. i hope you medicad gets straighten out ours in not even in place yet, all paper work not done took only 3 days to get him in, i pray i don`t have any problems. take care , if you want to e=mail my it`s in my profile
I have been thinking a lot about you lately. Wondering how you have been doing. It is a long, lonely road, and everyone here sends hugs and support. I am sure everyone who has placed a LO in a nursing home feels the loneliness you do, but in your case it is somewhat different because you are so young. I am sure more members will be along soon to give you a hand of support.
Have you checked into Tracy Mobley's "Camp Building Bridges" for your children? She has EOAD, and through donations and sponsorships, started a summer camp for children of parents (and grandparents) with AD. It is a place where all the children understand each other's struggles (similar to us spouses here). It is a place for them to get away from the stress of dealing with AD. This is the link - http://www.freewebs.com/campbuildingbridges08/camp2009.htm
Kelly, You ask about Spring and feeling more.Yes that is definitely how I am feeling. It's as if we got through the winter and were hoping for some sense of renewal or new beginnings and yet here we are ... In the same sad place.
I am so sorry that your husband has progressed so quickly. My husband remains at home and hasn't progressed nearly as far.And yet, so much of what we once shared is gone..I love being outside and feel closer to God there ,than anywhere else. We have had some beautiful weather here and I have tried to get my husband to come outside with me and enjoy the spring air. But he no longer can enjoy the same things and so many things outside now annoy him...
I think the Spring may be the worst time for us. Everyone is so excited and making plans about gardens, and trips and projects and here we are . Everywhere you look there is new life except of course for us.
Kelly, I send hugs your way and will keep you and your dear children in my thoughts
((Anita)), you hit the nail on the head with Spring. I am feeling that too. I have always loved Spring and all the new hope it offers. Yet in my heart it feels I am perpetually stuck in the dead of winter, surrounded in the dark abyss of Alzheimer's.
((phranque )) I must have been away when you joined our forum family, welcome! You have a way with words, your analogies really make one see what you are trying to express. Keep sharing, it will help you through the storms.
((Kelly)) You have been on my mind so much lately. I too had to place Lynn 6 weeks ago. I am so sorry to hear how badly your DH has become. I can't fathom the pain you must be feeling. I just can't :( . My heart breaks for you and your little ones. I know the feeling you are talking about, being surrounded by people, yet still feeling so alone. Its a horrible feeling and I wish there was a way I would help you through your heartache. Please know you are always, and remain , in my thoughts and prayers. ((hugs)) Nikki
Oh, dear Kelly, I've been worrying about you too. I can imagine how hard it must be. Actually, I can NOT imagine. I can say "I hear you" but I can't say (yet) I've been there, so all I can feel is sadness for you. Hug the boys extra special even if, as I'm sure they do, they get on your nerves a lot!!
Oh my dear Kelly.....I don't even know what to say. Others here have said it so graciously. The loneliness and the loss are so overwhelming, it's amazing our hearts can keep beating. They say that the walk down life's road is a solitary one and I know when it comes to something like losing our love to AD, it is ever so true. We can post here, we can listen to family and friends who offer heartfelt love and sympathy.......no matter where it comes from.....unfortunetly it does not stop the pain.
You are so much cared for here and hearing what you have to say and reading all the posts from Nikki and others who have walked down this yucky road is the only real comfort we get since you have to walk a mile in someone's shoes to really know how they feel. We all walk in each other's shoes........Love to you dear Kelly.
Dear Kelly, you have been in my thoughts and prayers. I can't imagine going through what you are going through and with children at home to raise as well. You have a very large burden, but you are managing well, from what you say. It has to be so very hard, and being there for the children 24/7 takes so much strength. You have it. I'm giving you a little of mine to help.
Marygail, you too have been in my prayers.
Frank, I'm in the same boat as you - you said it very well.
My loneliness started over a year ago and proceeds to get worse. I have him at home with me and I'm still lonely, because he doesn't know who I am (other than the person who takes care of him) and he can't talk, so it's like having a 5'11" walking doll to take care of and provide care for 24/7. I can identify with lonely!
Mary...You wonder what is more lonely, having our love at home or in a nursing home. Mine is also still home and he's 5'11 1/2" tall although he's lost so much weight and bends over so far that he doesn't appear that tall anymore. Loneliness is what it is no matter where we are but I have struggled with not having him here with me and knowing that the time is so close that I will have to move him to a nursing home. Oh God, the thought makes me want to throw up. I don't know anymore. It's all so sad....so so so sad.