I have a very special blog for you this morning. One of our members and her husband generously allowed me to print the essay he wrote ( with her assistance) about what it is like to have Alzheimer's Disease. It touched me deeply, and gives a glimpse inside the world of AD that can enlighten us all.
Please log onto the home page - www.thealzheimerspouse.com - and read the blog. Post comments here.
This is incredibly powerful. My husband has expressed many of these thoughts but in a much more fragmented form. If these words do not make us stop and think and show more understanding and compassion to our loved ones with AD I don't know what would do it.
I think it is interesting that he called it "a fog" because when my low thyroid was being mis-managed that is how I felt as well. I was having early dementia symptoms, mainly word finding issues. Low thyroid is one of those diseases that can look like dementia, but isn't. When they gave me more medication it all went away.
It really did feel like a fog. The words were there, but I couldn't get to them.
This is so apt a description of where we are. He is entrapped in the ever widening, thickening fog, and I am outside it trying to keep us connected and help him find his way in it. The fog is winning, but will never severe the heartstrings that bind us. That is the tie which will allow us to beat the fog, when he makes it through to the otherside where he will be whole and free.
This could have been written by my DH. He is still good at expressing his feelings and does so. He often speaks of the "fog" that envelopes him sometimes. I can only try to keep stressful situations from him and talk when he needs to. God bless us all as we travel this awful road.
I must have read "Evil Fog" 4 times I printed it and put it on my desk at work right next to the picture of us (same one attached to my comments)and next to the last picture of him when you can see the lights have definately gone out and the "fog" has taken over. I know that no 2 people are the same in this disease but what an insight into a lot of the same similarities. The repetition must be that they think they are not speaking or not hearing or in a vaccum. I really do too much analizing and trying to make sense for my own peace of mind and it is so frustrating.
Thanks for sharing this insight. My husband often refers to always being in the "dark place". Since he has struggled wtih depression so much, I assumed the "dark place" was his depression. Maybe it is the AD?
Wow! It helps me understand what my LO is going thru. It helps me have more patience with him. Thank you for letting us read this. He had taken the MMSE test at the doc's office last spring and I believe he scored a 5. I don't feel he is "severe" because he can still talk, walk, etc. He does call things by the wrong words, toothbrush is "that mouth thing" etc. So maybe... I just don't know where he is on a scale but being in a fog describes him well. God help us all.
Thank you for sharing your insight, our stories are so identical as we walk side by side in this journey. As you noted you have a great support system and that is very important during this time.
Marvelous. how poignant, I am sending it to my children and my friends so that they can understand too, what it feels like to him. Just last night he was trying to explain to me what he felt like and what he was trying to say sounded just like this description. My DH has always been a writer, and I have tried to tell him to write about how he feels now. I told him, people are really interested int what it feels like from the inside.
When my husband was in the beginning of his illness, I was visiting him and he started crying . I was concerned and asked "what is t he matter sweetheart"? He replied, "I want to find myself" Iwas devastated and since then often I think of his outburst and I am always at a loss to figure out how lost he must feel. /everyine's sense of identity is established at a young age and is an integral part of our psyche and to have lost that sense of identity is very frightening. I wrote a poem about it in an attempt to relieve myself of my anxiety .
I WANT TO FIND MYSELF
For a moment in time, The swirling mists in his brain lifted His gaze became direct and intelligence Once again became evident as he looked At me.
“What’s wrong ?” I asked with concern, “I want to find myself”, was the reply,
Oh! How to comfort my beloved when I myself can find no comfort, How frightening it would be to not know my identity amidst the ever new and changing strangers around me.
Oh Lord, show me what to do and say, To this sweet and vulnerable man who is my soul mate. Then the words come from the depths of my being,
“Oh my love!, you are still a person with a soul untouched by this disease, In the essence of your being, you are complete and whole, With a name and history of many accomplishments behind you, You may not be able to recall these things but I remember, I remember!
Some day when God receives you unto himself And you are made whole again, You will find yourself, Until then I will guard this knowledge of your unique being And with all my love and dedication remind you of who you are
I will face this relentless foe with a resolve To keep my sweetheart’s sense of being intact Until he himself will awaken from this horror And say with joy to his Lord, “Here I am, your creation I was lost within myself, and once again I am found.
How Beautiful, Carewife, it does seem to put into words the exact feelings of living with AD. I have often wondered how DH felt in those first yrs of AD. How could losing your very essense feel, your personality, the ones you love become strangers? you feel lost in the fog, etc. i can only imagine its something like being on a halleuciginic drug of sorts. but NEVER coming down off it..how frightening it truly must be. the insight this man describes is so useful to those of us trying to help them along..divvi
I printed this out and gave it to my husband to read. He said, yes, it's exactly how I feel. He has not really READ anything more than just photo captions for many months but he read it all and obviously understood it. Thank you!
When I visit my husband at the facility and look into his eyes and many of the other residents, the fog is a perfect way to describe it. I know that there is a full person in there - it is in their eyes. Thank you for sharing the words and feelings with us to help us see and understand the disease from a different perspective.
I just sent "The Evil Fog" to my sons/daughters-in-law, telling them that when I read it, I thought "this is just how my husband/their dad must feel. And then when I went into the message boards, so many more of you felt the same. My husband isn't able to verbalize or to write down how he feels anymore. I can just tell by his actions most of the time and try to help him get through the "fog." Thank you, David and Betsy, and also to Joyce for the beautiful poem.
Thanks to you all. You are my sanity. It used to be my DH, but (sigh) no more. No pets. DH not a 'pet person' and I don't need something else to take care of anyway. My DH and I are pleased that this is so helpful to others. Actually, while still in early stages, the expression issue has progressed to the point where I 'interviewed' my DH by email and then wrote the article, with him tweeking it a bit--one thing we can still be a team on. BTW, while this article also is copyrighted, feel free to share freely for these purposes.