Hi all,
I just start new posts instead of going on from the last time. I am not sure that is how it is done on TP. I have a number of things on my mind. And I like to put it out there to clear my head.
We (my children & I)have been living with Early Onset Alz for many years now. My husband is described as atypical, meaning although he showed systems early (executive decisions and short term memory) he has had a very slow decline.
That does not mean his condition has not hugely affected our lives and the lives of our children.
First point (complaint/moan)
When I was diagnosed with leukemia in March people said, If there is anything we can do to help. It has been a real rollercoaster. Last week I was told that I have another condition which is systemic lupus erythematosus, which is also autoimmune stuff & white blood cell related. I do not even care anymore. It is uncertain whether the condition existed before the leukemia or if it is a side effect of the drugs which is a possibility. Back to my point, it is very difficult to ask for help, but I have learned to do it some over the last 10 years. But going out there and asking for help and then being rejected is really difficult emotionally. I get help and support from a number of my close friends. And I am grateful for that, but I find there are many people people who are insincere and do not want to be called upon to assist. Which keeps me in my defensive position of not asking for help. In the end, I told a close friend and she helped me. But she helps me a lot. I have two or three friends who really take the actions of helping....I guess that is more than some people.
Point 2
My OH still goes with me to the occasional party or outing. (He will not go to the sinfonie or musical events any more) At these occasions people say to, "he seems perfectly normal to me. I had a very nice conversation with him" This should make me happy, but it does not. On the one hand, I am very happy that outsiders/acquaintances, his own family in England, think my husband is so "normal" and tell me so. But their comments invalidate what my family has endured and all we have lost. People do not understand as they are not living with this decline. This intelligent man who can no longer use his computer, his mobile phone, sits on the couch all day and communicates very little, except when with strangers. (He is still unwilling to go to any programs as they are in German and he would get little out of them) Today some sweet young missionaries from the Church of the Latter Day Saints are coming to take him for a walk as he has not gone alone for years, he would get lost and I cannot take him on long walks at the moment.
Point 3
Since the onset, my OH has had these feeling of deja vu. But it is more than that. He is convinced that he has been in that particular place before. I know how to handle this experience (which is just to go along with him as it no longer matters) For example, we will go to someone's apartment and he will tell me he moved them into the flat. Or we go to a hotel, to my knowledge where we have never stayed before and he says he has stayed there. This weekend we went to Romanshorn to Lake Constance (We had a lovely day out with my girlfriend) We went to the Badi at the lake and it was sunny and perfect. Swam and had a nice lunch. But he told her he had been there many times. (She is a close friend know has been with us through all this) she knows this is one the odd things he does. So we just let it go. But what is this deja vu stuff all about. Is it something pushing on part of his brain , is it a coping mechanism to feel comfortable. These false memories were one of the first things which happened with his Alz.
I have not been a kind and loving carer each day of this journey, some days I am an acceptable carer. I have become a disgruntled & fairly bitter person, but I have stayed and done my duty, lived up to my marriage vows and provided for my family. But I have become more and more bitter. I do not care with the love which I read and see from many of you devoted carers on TP.
That's it for me today. I am going to lunch with a friend while my OH is going for this walk. It should be good for all.
I just start new posts instead of going on from the last time. I am not sure that is how it is done on TP. I have a number of things on my mind. And I like to put it out there to clear my head.
We (my children & I)have been living with Early Onset Alz for many years now. My husband is described as atypical, meaning although he showed systems early (executive decisions and short term memory) he has had a very slow decline.
That does not mean his condition has not hugely affected our lives and the lives of our children.
First point (complaint/moan)
When I was diagnosed with leukemia in March people said, If there is anything we can do to help. It has been a real rollercoaster. Last week I was told that I have another condition which is systemic lupus erythematosus, which is also autoimmune stuff & white blood cell related. I do not even care anymore. It is uncertain whether the condition existed before the leukemia or if it is a side effect of the drugs which is a possibility. Back to my point, it is very difficult to ask for help, but I have learned to do it some over the last 10 years. But going out there and asking for help and then being rejected is really difficult emotionally. I get help and support from a number of my close friends. And I am grateful for that, but I find there are many people people who are insincere and do not want to be called upon to assist. Which keeps me in my defensive position of not asking for help. In the end, I told a close friend and she helped me. But she helps me a lot. I have two or three friends who really take the actions of helping....I guess that is more than some people.
Point 2
My OH still goes with me to the occasional party or outing. (He will not go to the sinfonie or musical events any more) At these occasions people say to, "he seems perfectly normal to me. I had a very nice conversation with him" This should make me happy, but it does not. On the one hand, I am very happy that outsiders/acquaintances, his own family in England, think my husband is so "normal" and tell me so. But their comments invalidate what my family has endured and all we have lost. People do not understand as they are not living with this decline. This intelligent man who can no longer use his computer, his mobile phone, sits on the couch all day and communicates very little, except when with strangers. (He is still unwilling to go to any programs as they are in German and he would get little out of them) Today some sweet young missionaries from the Church of the Latter Day Saints are coming to take him for a walk as he has not gone alone for years, he would get lost and I cannot take him on long walks at the moment.
Point 3
Since the onset, my OH has had these feeling of deja vu. But it is more than that. He is convinced that he has been in that particular place before. I know how to handle this experience (which is just to go along with him as it no longer matters) For example, we will go to someone's apartment and he will tell me he moved them into the flat. Or we go to a hotel, to my knowledge where we have never stayed before and he says he has stayed there. This weekend we went to Romanshorn to Lake Constance (We had a lovely day out with my girlfriend) We went to the Badi at the lake and it was sunny and perfect. Swam and had a nice lunch. But he told her he had been there many times. (She is a close friend know has been with us through all this) she knows this is one the odd things he does. So we just let it go. But what is this deja vu stuff all about. Is it something pushing on part of his brain , is it a coping mechanism to feel comfortable. These false memories were one of the first things which happened with his Alz.
I have not been a kind and loving carer each day of this journey, some days I am an acceptable carer. I have become a disgruntled & fairly bitter person, but I have stayed and done my duty, lived up to my marriage vows and provided for my family. But I have become more and more bitter. I do not care with the love which I read and see from many of you devoted carers on TP.
That's it for me today. I am going to lunch with a friend while my OH is going for this walk. It should be good for all.