Friday, July 30, 2010

The very Fabric of This Blog

Anonymous has left a new comment on your post "talking it out":

Hi there Lynn & Joe. You two sound like such a perfect couple. I'm sorry to say that I am not feeling that way about my husband and I. My spouse is 17 years older than me. He was diagnosed about the same time as Joe and yes, he seems to be experiencing relatively the same stages that Joe is going through. But I must confess, I am not feeling like the pleasant, let me make you feel better caregiver right now. The TV can only be on one of the two channels he chooses, Fox News or the Weather Channel and he doesn't even watch them. He, like you Joe, stares off into space. I try to strike up any type of conversation by commenting about what they have just shown on TV but he wasn't watching it and has no idea what they were talking about. Then he gets angry with me because he is confused about my comments. Lately, he is always crankey and YELLING at me and our extended family (5 children, 6 grandchildren) so they don't seem to come around anymore. I do go to work part time but he is insistant that I not leave him for more than a few hours at a time and demands that I not go anywhere away from him for any type of enjoyment. He doesn't even want me to go shopping to get things that we need, only to the grocery store a half mile away. He makes me feel guilty that he is afraid he will die alone and that I must be with him at all times. And I don't mean just at our home, he insists I be in the same room with him ALL the time. People say to me that I should get out and do things for myself. I agree. But the reality of life is that other people don't include you when they know you have to be home with your spouse all the time. They don't want to be the cause of his anger either. So here I sit feeling so all alone in the same room as him. I provide his meals, cut his hair, do the grocery shopping, take care of our expenses and accounts, pick up his prescriptions, do his laundry and clean up after him. He refuses to go ANYWHERE. Will not leave the house and wants me to do the same. I do understand that what he is going through is very difficult. But there is never any expression of gratitude or even acknowledgement that this is difficult for me to go through also. He used to tell me every night when we went to bed that he loved me, but even that has gone. Now I only seem to be the object of his anger and frustration. But all the same, I will keep on keeping on. I won't give up, but it does help to have an outlet to release my feelings, even if it is to someone I have never met and never will.

Joe, please give Lynn a hug and let her know how much you love and appreciate her. Sounds like you have a real piece of gold to hang on to through this journey we all pass through. My love to you both.

The above is a comment shared on this blog in respose to a posting by my wife Lynn, who I am 16 years older than. This lady is suffering just as Lynn is, I have become very combative, pig headed, a dick, paranoid and more withdrawn.  I have asked many of you to be guest bloggers for the above very reason. I cannot tell you how many 100's of emails I have received just like the above comment.  See all I can respond to these people is that I am sorry for your mate and you, but it is only going to get worse, a lot of comfort right, wrong, but it is the truth. I ask again that you help with posting. See even if you do the same thing everyday, you still do something a little different and that little difference could help someone like this lady. Me i love and appreciate your words of encouragement, but really they are gone as soon as I read them. You see I know that I will not get better only worse and it is doing that quite well. I am on a journey to keep an appointment with mental collapse and physical death that is the reality of it. It sucks, i hate how i feel, i do not like my distrust and disgust with others, but my emotions are no longer mine, I even do not feel bad anymore when I am a real pain in the ass or hurt feelings, my brain says tough crap to you. I hear and see things now that are not there, i do not even know when I am being talked to. Sex keeps rolling in my brain but the old pecker does not help out and I even say who the hell caaares to taht. I am getting like my good friend Dr. Joe Savick, making a 42 paragraph post. Thanks for listening shit has hjust built up in me and while I am thinking of it I am making this post.

God Bless & Keep You & This Country of Ours.


JUST A MOM said...

JOe!!!! I love this post and YES this would be the PERFECT REASON FOR YOUR BLOG. Sorry I am just now catching up on posts... My oldest daughter and grand baby have moved in with me. Hang in there and keep on keepin on my friend.

Heather said...

I read your blog and comment when I can. For me you have given insight to what happened (and continues to happen) to my dad. I don't really have a connection to the caregiving side because that was done by my mom and it seems there are so few that are children of AD patients that aren't caregivers that I feel out of place. I continue to struggle with losing my dad(and to a certain part my mom) but still having him here physically. I have become lost to him and that is probably the hardest part. So many try to make a happy ending for this story but for now I don't see one. Reading how you and Lynn are facing this challenge and reading others responses does help pull me through. It is this group of people that truly understand how much this sucks even if we are trying to put on our happy face. Thanks once again for letting us inside. It is a difficult task but one you have taken on and by doing so given so much to so many.

Anonymous said...

Good Morning!

It's me, Anonymous. I have to write as Anonymous as my husband would absolutely flip if he knew I was posting anything. He is a very private person and for the first four or five years was in total denial that there was anything happening with him. He now will at least comment about his mind being so foggy that he can't think straight but don't dare say that he has AD. I suspect that a lot of people who read this site and would like to comment are probably going through similar experiences.

I wanted to share with you and the readers that when I wrote last, I was so down and depressed, with tears dropping down my cheeks as I typed, but I was angry and needed someone to talk to, someone who might understand how I was feeling. Life is strange, but you have no idea what a release it was for me and I felt so much better after I spelled it all out. In the past I attended an AD support group but found it of no assistance. People seem to want to tell you what you should and shouldn't be doing to cope with what you are dealing with. I, like others can read about all these things. Anonymously, we can all be brave enough to talk about our innermost thoughts and true feelings. God bless you Joe for having the courage to share your innermost thoughts and feeling so openly with all the world. As you can see from the lack of people responding, the rest of us do not have the courage you display. Maybe you can't always tap into the knowledge you once had but you certainly do display the wisdom that you have attained, even during such a difficult time.

To Heather,

I appreciate hearing your comments. Out of our five children and their spouses, I have one daughter-in-law who sometimes talks with me regarding her feelings of how this has effected our family relations. It does really help me to know that I am not the only family member recognizing the changes in our lives and it gives me the opportunity to share my feelings and observations and to remind them that even though life may be different now, I am so greatful that I still have him with me, still able to hug him, kiss him, know he is beside me at night. Yes, we have all lost the lives we once considered our normal, but life is continually changing and physically we do still have our families. The challenge as I see it is how we continue adapting to our circumstances. Please continue to share your feelings as I think you can be of so much help for me and others to understand some of the challenges our children may be experiencing.

I must admit, this is the only site I have ever found that really says it like it is, and I for one really appreciate the honesty I find here.

Love to you ALL.