I am back

Feb. 10th marked the 4 th month since my Joe began this horrible scenario of not knowing I am his wife. I joined the group but lost touch for a few months but " I am back". It seems as if one day rolled into the next and chores kept me from connecting with you all. Each day I became more and more resentful and I know he sensed it as he responds so much better when I am more gentle and caring. But I feel so lost in the reality of what has happened to our love, our half + century marriage and each day we drift farther away from what we had and shared.

We made it to Disney and that is where we are now with 3 days left of our week's vacation. We are in a beautiful 3 bedroom Villa that we share with our two loving sons and their families.

Joe and I were alone tonight as the rest went to dinner and I had the TV on and American Idol and someone sang "My Funny Valentine ". I said nothing and waited to see a reaction. There was none and I said to him :That was our wedding song....

He said nothing...just stared at me.

He then came over and said "I'm sorry ". I asked if he knew why he was sorry and he said he does not want to hurt me, but he does not remember anything about our life together.

I said I am the mother of our sons and I am his wife. He looked at me and once again said I am just a friend and his wife is home. I said again, I am your wife. When I asked him his wife's name he responded with his mother's maiden name. She passed away when he was 14.

I said no more.

Children returned and we got into sharing their stories of the fun they had.

It is exactly what is advertised about this place, it is magic, and I came with the hope we would regain something of what has been lost because of CBD.

I have lost his love, his caring for me and the rejection has torn me apart. However, I am more resigned to what lies ahead, and while I do feel for him I can't help but think he almost enjoys doing absolutely nothing for himself. He has never shown any real determination to help himself and although he goes to P/T and O/T twice a week he will never do any exercises at home. I have to force him to drink water and he has no interest in anything I give him to read or share.

He barely plays with his grandchildren and for the past weeks his ability to speak in audible sentences has greatly declined.

His hands have become more disabled and eating on his own, which is the only thing he could manage is now very difficult to do.

He can still walk, and I am always at his side. I never leave him alone. I take him wherever I go.

I had hoped this delirium would go away but I no longer believe it will.

There is a rehab facility he was accepted to attend and they will pick him up at 8:30 and bring him home at 2:30. He will sit with other veterans and that will hopefully make him comfortable. It will cost $200 a day. I know I need that time to catch up on so many things but I am nervous about leaving him.

I am writing all this because I have been "absent" but I am back.

I look forward to hearing from you

11 Replies

  • Hi, my husband has PSP, so I don't understand some of the different symptoms of CBD. S does know who I am, but I can totally relate to feeling of loss of love. My marriage is over, I am just S's Carer now. Not the position I applied for all those years ago!

    Last week S went into a nursing home for the week for respite. The rest has done me a power of good. I can now remember that we do still love each other. Perhaps a break might do you some good as well. It might give a few brain cells a jolt, so he remembers who you are. If not, at least the rest will enable you to cope a little better, for a while!

    Lots of love


  • Thank you. I feel so alone these days and I am trying to understand why I get so upset when he treats me like an outsider. I feel I don't show enough compassion to him as he is the one with the ailment, but he is fresh and so uncaring and I just deal with his attitude very poorly. His needs are so many and he does so little to help himself and acts as if he expects me to do it all as if I am the hired help. I thought we would do better here on vacation but he tells me his wife is home and that makes me irritated. I hope releasing these thoughts will bring me some peace.

  • Honestly, you are not the only one who feels like this! I do as well. I know that doesn't make it easier to take, but at least you know you are NOT alone! The diseases that our husbands have, do not just affect the sufferer, the Carer has just as a raw deal! In some cases, more so, as we have to watch and deal with the illness. S does have hired help to look after him, some of the time. They have a much better time than me. Time off! Paid leave! Even the odd thank you from himself!!! But I am afraid the bottom line is, they are our husbands, we still love them, for better, for worse, in sickness and in health. Obviously, who ever wrote those words, knew about PSP/CBD!!!

    Lots of love


  • You said it, Heady

  • Oh yah and B will not do his exercises on his own either.....he has opportunities but will just sit there with his books on tape all day.....Unless I take him to the gym, and plop him down on a machine, sit,,,,,he doesn't even ask for lunch as he is now tube fed....sit ...sit... sit.

    That's not totlaly fair. He does do his morning bathroom routine by himself and walk himself to the door (I'm behind him and his walker holding his shirt-waist) to be led outside for a smoke....and he goes to bed on his own....well I help him but he decides to go at 10:30 pm so those are things he does for himself....but things he does for me....Not fall? He doesn't smile initiate any sort of empathy.....so what he does for me, I must claim as the stuff I told you he does for himself....I have lost expectation of anything else......mmm sort of .....


  • Tell me about yourself please. Also, what meds is your husband taking?

  • My wife has PSP and she still remembers most everyone, especially me. She has some dementia and often hallucinates. I've always feared she would someday forget who I was or even think I'm a stranger and not let me care for her. Our best friends husband had FTD and he forgot his wife was his wife. So sad.

    But ... we know who we are and that they can't help what's going on in their brains. They certainly never asked for this. I definitely get frustrated at times and sometimes have to walk into another room an count to 10. Or say a prayer to God asking for strength.

    I can honestly say that these past 6 years of providing almost total care for Kim, that I love her more now than the day we were married. I almost feel it is an honor and privilege to care for her (most of the time). It allows me to be a tiny bit more like Jesus.

    So envious of your Disney vacation. Kim was the biggest Disney fan. I couldn't begin to count how many times we have been to the Magic Kingdom. We've sailed on their cruise ships 5 times. I told her the other day that if she continues to get well and strong enough that we would go again sometime this year. I sure hope I get to live up to the promise.

    Everyone, hang in there. Remember the good times. Remember that most of our spouses would have been willing to do the same thing for us, if the situation was reversed.


  • All I can say ....is I'm so sorry ....and I can so relate...B knows us but does not get excited over anything. Yesterday was my birthday....and finally after my daughter came over ...(.Yay My daughter came over !!!!) he said happy birthday.....that was nice....but I so know the feeling of him not responding to my emotional rants no matter how ardent or mild.....his response, if any would be, where's the clicker, etc.

    So take this holiday and make it a good memory know that this CBD is going to take the memory from your husband.... it's nothing else...it's the disease....he does not want to be this way......even if he wasn't highly energetic...downright lazy...CBD was not in his plan.......Make take find happy memories....and believe me you are not the only one crying....but at least you are not alone...we are all hear....


  • Heartfelt thanks.....

  • Your story scares me because I fear that my wife will break when I get worse. I keep telling myself that I will beat it but I fear that is male ego talking. I have gone from mild strange occurrences three years ago to a definitive diagnosis of PSP in September of last year. I go to a gym for rehabilitation and have done well in a trial test of the equipment and start serious workouts on Tuesday. I already passed my weeks of very basic balance testing and such at the same place. My wife and I live in Emmaus, PA near Allentown. My wife and I have been married since 1968. My best to both of you.

  • Thanks all for sharing. Today, when I asked him why he won't acknowledge that I am his wife of 55 years, he looked me directly in my eyes and simply said, " because I don't feel it, and don't remember it" . Nothing left for me except to accept his feelings.

    I have been erased, eliminated, dis-regarded and dis-respected.

    I think it is time for outside help to care for him.

    Without his love I am useless.

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