Gene has been going in and out of knowing me lately. Tonight he didn't know I was his wife or that we are married. Somehow I am not disturbed by it, at least not as much as I thought I would be. Maybe it is because I knew that day would come. Probably when I go to bed I'll have a good cry. I wish I could have one. It is like I have turned off the emotions. Woops, I think there is a tear coming on. Thanks for letting me tell someone. It is nice to have someone to tell at any hour or time. Thanks again....Joan.
Barbarakay Wrote a bunch to you and hit the discussion button instead. Anyway, Tough, rough spot you are in. Your feelings seem to be shocked, numb and worn thin. Our emotions are tried to the max daily. Cry if you can, let it out then get some rest . Lots of hugs go out to you and continued prayer for you and all us AD spouses.
This is one of the things that scares me the most about this horrible disease and I can't even imaginge what it would be like. My tears dried up many years ago so I won't even be able to shed those. So sorry, Barbarakay, hangin there!
Barbarakay, How are you this morning? You were on my mind during the night as I woke up several times.The more I thought the more I tried to put myself in your shoes and my heart ached. This AD is so hard. More hugs coming your way, grab hold and know we are here for you thanks to Joan and our GOD above. Thanks for sharing, PAT
Barbarakay, I think what you are feeling is pretty normal....I had to turn off the emotional responses to what was going on years ago or I would have never survived. Probably not the best thing to do, but it is a coping mechanism. That being said, it doesn't make any of it easier. I try not to think of what I have to do on a daily basis because when I do it just seems so sad and overwhelming. I just keep busy doing fun things and taking very good care of myself.
I understand this feeling. I have spent hours, days, weeks, months crying. I'm all cried out now. I know what's happening to me, to him, and why, and I feel less anger, less frustration, and yes, less sadness. The disease is progressing. I'm no longer shocked, or even surprised (much). It does not mean I love him any less than I used to. I loved him years ago, and will always love him, as he used to be, and even as he is now. Now, though, I save my tears for a quiet time when I have a chance to just listen to my own heart. I save my tears for when I need to express my sadness. I save my tears for when it's a safe time to cry, or when I'm with someone who cares also. There are times to cry. There are also times to be brave. There are also times to be wise, and know, that this too is a part of life itself. It is what it is. Best wishes.
Hi Barbarakay, I thought that forgetting me would not happen until near the end. My mom and mother-in-law knew us until a year or so before they passed away. It came as an enormous shock when a year ago, Gord thought I was a girl he knew in school. He now goes in and out of knowing me. I guess it isn't as hard as it was at first but I still feel like I have been punched every time he asks if we are married, where Jan is, if I am married etc. This is not an easy journey.
Thank you for all your kind words of understanding and support. I feel better about the lack of tears. Yes today he knew me most of the time. I don't like to quiz him too often, so I don't know if he knows I am his wife, but he did call my name a couple times.
I tried to leave him about 45 mins to go to a neighbors today. I left a note about where I went and made sure he knew how long I would be gone. He was in a panic when I returned. He had been all over the house and back yard looking for me. He was trying to figure how to use a phone. That is it, I will not leave him alone anymore. Now I am trapped.
My last few months with wife M have been very similar. Several days ago while we were awake in bed in the dark of night, she said "When are you going home?" She thought I lived with my parents. (They died 40+ yars ago.) I'm not sure who she thought I was. When I ask her "What is my name?" she can't always tell me and answers with "A nice man" or "Someone I know."
When I leave home for an hour I schedule the time when I know she will be in bed napping. I leave my cell phone number on a clip board for her. Yesterday, when I came home from a two hour errand, I found her in the kitchen getting ready to prepare lunch. I reminded her that we had already had lunch and supper was several hours away. She can no longer prepare food. She just sets things on the table like carrots, bananas, potatoes and sits there there puzzled. Its so sad.
Barbarakay When I was able to leave Bill for a short time, I always had a dry erase board on the front door and another one on the refrigerator. I would write something like," Bill, I went to the store to buy some milk at 8; I will be home at 9. " I always put the time I would be home because saying one hour didn't mean anything to him. He didn't understand length of time but he was still able to tell time. I always made sure to add extra time so I would not be late.
This note also helped when the kids would call and ask for me. Bill would always say I wasn't there and he didn't know where I was. They would direct him to the board and have him read it. If there wasn't anything on it, they knew I was somewhere in the house and make suggestions on where he should look.
The dry erase worked until he couldn't understand what was written and was to confused to stay alone for any reason.
C I had to start sleeping in another room because Bill didn't know who I was or why I was in his bed. He would be very nervous and couldn't sleep until I switched beds.
As for not knowing who I was. He hasn't known me for over a year. Luckly, I am usualy that nice person, so I can stay. There are times when he doesn't have any idea who, what or why I'm there. But then there can be that instant where he recognizes me for just a second.
When I went to visit him in the hospital last night, it was one of those moments. He got a big smile on his face when he saw me and it made my drive there through the fog and rain all worth while.
I don't know who I was last night. We went to bed at 9 to watch a movie. Usually Gord falls asleep and I am peaceful. Last night, every time I looked at him he was awake and he looked rather manic. All of a sudden, he asked when my husband would be home. I tried using humour but that fell flat. Then I told him he was my husband. After a bit, he got up and started dressing. He had to go home as he had work in the morning. I tried diversion, tried reminding him that he can't drive at night, nothing worked. At least he was cheerful and quite animated. He asked where he had left the car and there was a glimmer of hope. I said I didn't know. He said he would look through the parking lot. He went to the front door and got into his boots. He had his coat half on when he looked around and said that this kitchen looks just like "ours". I told him that this was our home and he was just confused. He said and you are my wife. I said yes. He decided then that we could go back to bed. We were just settled into bed when he asked again when my husband would be home. Finally, I could feel him falling asleep. I was very afraid when I was waiting for him to get up this morning. Who would he be. He was a bit strange and I know he didn't know me but he seems to be improving. How do we get through these days? How are our bodies going to be affected by the doses of adrenaline that rush in with all the fear that we face on a daily basis? This is not fun.
I hate to say I am also not know many times a day. JR looks over at me and asks when I will be home. I sometimes reply that I am home and am his wife, others I say I should be back shortly. He will also ask me when I tuck him in at night if I will be sleeping in his bed. I say yes and he is still ok with that. What strikes me strange is that he often does not know me but he always knows people we meet on the street. He will know our children when we first see them and then later not know them or know that they were just here for a visit. It was very hard on him at Christmas being in a room with 20 relatives. He knew them but did very little interactions. he usually does not know if he is in our home or at someone elses anymore. Kathy
Hi Northstar, we are the same way. Gord knows our kids and it seems everyone but me. That really hurts and also makes people wonder why you are saying that he doesn't recognize you. There are some people of whom there are 2. One of our good friends is frequently 2 people. He is someone who Gord sees more than our kids. He frequently thinks we are on a course, working in this place or just recently here. We have lived in the same apartment for over 40 years and in the same building for almost 43. It is just so difficult to understand how the brain can do this.
Mid August 2007, DH began spurts of seeing me in "Second Person." i.e. talking to me ABOUT me as though I were-well-Not me! I assumed sundowning. Late August it was more frequent, even in morning. By September he started the "You weren't home last night" and accusing me of sleeping around. The confusion advanced to asking if I knew where his wife was. He said I was not his wife. I was her assistant. She leaves me here to help him when she goes away at night. He often says "My wife just left me with the kids. She’s sleeping around. She goes to those sex parties. I saw her car there in the driveway. I know she's there." I show him both cars in our driveway. No matter, I try to reorient him and he still talks to me...ABOUT ME!!!!! I’m not the wife he's talking about. Her name is Diana and she drives a red truck. I ask him "OK, who am I?" …pause… He says "Diana." I say "I'm your wife and my red truck is right here." He says "No, Her truck is just like that." This is now RULE. Not exception to the rule. We have seen some serious anger and agitation that can be rather intimidating.
First this was funny. Then it angered me. Then it began to hurt. Then it made me cry from morning to night. I self-talk tears of hurt away. Now when I cry it is tears of pure frustration.
Reading your posts is scaring the daylights out of me and I feel so for all of you. Thankfully we are no where near the stage of your loved ones but just looking ahead is so scary. I don't know how you all do it and keep your sanity. We have to try and see the humour in some of what happens but this journey is definitely not a fun one.
Jang, I am sorry to hear we are on the same path. I am curious to know , are you keeping your spouse at home? I am soon going to place mine, as I can not work and care for him anymore. He will get more stimulation and better care in a home. I and our children plan to visit him daily but he will be placed for his own safety. Kathy
Hi Kathy, Yes, Gord is at home but in so many ways, he still functions well. He is still having his showers without help and dresses without any help. Just recently, I started putting out his meds for him. He was doing it with my supervision. I guess this disease seems to hit all different parts in different people. He knows me and/or loves me a good part of the time. We will be starting year 6 in January. More, probably, as I know that things were difficult for him at work in 2002. I retired shortly after he did just because it didn't seem anybody out there wanted me. Now, of course, I would be afraid to leave him alone for any lenghth of time. It is going to be a terrible decision when the time comes.
I am happy to hear your husband is still doing so well Jang, mine can no longer dress himself, bath or eat without me cutting up the food or feeding him finger food. And he has only been diagonsed for 2 yrs . he is young only 63 and it is progressing very quickly. Kathy
Hi Kathy, That is so young and so quick. Gord will be 64 on Jan 3rd. I would guess he started at about 58. They have used the term Alzheimer's since the beginning but they also talked about a mini-stroke. It was when we went to the memory clinic that the neurologist there said that she didn't think he had a stroke and she flet it was Alzheimer's. It is funny that Gord never seems to hear that word and I never use it. I only talk about his memory loss. I am sorry that things have progressed so rapidly with you. Jan
Thanks Jan I really thought that when we got the diagnosis that we would still have 10 good years left, I am really grieving my loss right now, been a couple of pretty rough months. He is just so lost, it is so sad. Kathy
Hi Kathy, I was watching an episode of Criminal Minds the other night. It was about a man with PTSD after fighting in Somalia. He was so afraid and thought he was back in a war situation. I don't know why it hit me the way it did but I realize that as frightening as this is for us, the caregivers, it has to be terrifying for our spouses. This morning, Gord seemed to know me when he got up but was shortly crying because he didn't know where his wife was. I told him that I was his wife but he didn't even seem to hear me. He said he was going downstairs to see a friend and ask if she had seen me. I called her as soon as he was out the door but she was out shopping. She sent her husband home to help. I quickly got dressed and then had the idea to call him on his cell phone. I told him that I had been in the bathroom when he left and to come home. He did and he knew me when he came in. You are right, they are lost and the ways to make a connection with them keep changing. Things rarely seem to happen the same way twice. My thoughts and prayers are with you.
good Morning Jan, what a sad start for your poor husband for his day, JR is very confused this morning, I took him to A&W for our usual Sunday morning coffee, poor guy could hardly walk. I know it is time for him to be where he will get more care and attention in a safe environment. I just hope we can make it through to Feb. I am going to try and not go back to work until he is placed. But we will see how that goes, as I need the income. Kathy