The path of Alzheimer’s is a downward slope. As of now, there is no cure, and there’s no getting better. As much as we understand that, it’s human nature to stop periodically and wonder what we can expect to happen next with our loved one.
Most often, the answer is the same. No one can know for sure.
Everyone progresses through the disease at a different rate. Every person with Alzheimer’s has a unique mental, physical, and emotional makeup. Each issue affects the brain. If someone has diabetes, high blood pressure, and a history of depression, the brain’s health is impacted by this cocktail. That person is likely to have more issues than one like, my husband, Marshall, who had no other underlying health problem.
In addition, the rate varies from time to time. Often we see someone decline for a while, and then they steady through a plateau before declining once again.But the pace can pick up without warning and take a direct downward slide, particularly if they have a fall or an unexpected illness.
Marshall appears to me to be declining more rapidly the last few months. From the beginning of his 12 years of Alzheimer’s symptoms, he kept a slow, steady pace. Visitors who saw him yearly would notice the difference, but the disease gradually nibbled away at him, so it wasn’t drastic.
Now the progression is alarming to me from week-to-week, sometimes daily.It’s more difficult for Marshall to get in and out of the car.He needs assistance walking down a cub. I cut his food. And there is little we can talk about.
Recently, we lost his daughter to cancer. Marshall only once momentarily recognized his emotional attachment to the beautiful young woman in the coffin. He didn’t truly realize it was his beautiful Chrissy.
Yesterday Marshall asked what I was carrying out of the restaurant. As much as I tried to explain, he couldn’t comprehend what leftovers was. He couldn’t understand why I’d go in a restaurant to eat but come out with food. And he barely remembered us eating lunch only minutes earlier.
I can’t help but wonder what will happen next, what other piece of my husband will be taken away. I have so many questions. I wish I knew how he will be in a week or two. Will I be able to manage him this coming winter in the snow? Will he even want to go out then? Will he get to a point where he can’t communicate at all? I wonder most of all, if and when he’ll no longer recognize me.
On second thought–I don’t want to know.
(If you’d like to make a donation to the Alzheimer’s Association and their efforts toward support and research, please support me on the upcoming walk. And thank you so very much for those who have donated! The cure begins with you!)
Mary K. Doyle 
Mary,
I am so sorry. Know my prayers and love are with you and I do so understand what you are going through.
It is very hard not to be able to look into the next week with our loved one’s who have this awful disease, but in fact we cannot even look into the next minute with them. Every minute seems to bring them into a new world, one which not only they do not understand, but we do not either.
No matter what, I found with Mom the best thing to do, is to always live in the very moment we are in with them.
It does become so hard for them to do things, as truly they have no memory of “how to.” (Like getting into a car.) They do not even realize they are getting into one, much less the “mechanics of it.” That is where “patience” is going to become your greatest virtue.
Take care Mary. The word “strength” from you does not even begin to explain what is going to have to come from you in the days to come. Know whatever it is you are going to have to bring up from yourself, it is there and will come when needed. Love you and God Bless, SR
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Thank you so much for your love and understanding, SR. Sharing my thoughts as I travel this road is therapeutic for me, and hopefully, a reader experiencing the same. Your comment will touch them as it has me, as well. Love to you across the internet. You remind me we do not stand alone.
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Oh my goodness, SR, you made me cry with your beautiful words. Thank you for sharing so much with me. Yes-we love with our hearts. The mind may be gone but not the heart, not the love. Thank you for that.
The director at the home where Marshall now is often reminds me that even if he forgets me, it’s not likely he’ll forget that he loves me. When I am with him, he will feel his love and mine.
What a soulful journey we are on with this disease. I treasure your kind and loving comment. Thank you for taking the time to comfort me, SR.
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You are welcome. I am here to help whenever I can.
Mary, I was thinking about you and this post today. I was thinking about me and Mom today. Something crossed my mind I feel I need to share with you. Something I did not even think about back then. That is the “attachment” of the “mind” to one another.
As I thought about this, I realized how we are so attached to the “mind process” of another human being. The sharing, the past and future, the disagreements, the loving moments etc…. I begin to realize Mary, we may be attached to the wrong thing’s in others.
This disease seems to take everything away from a human being, to us. It cannot. Examples: It can never take the many nights my Mom stayed up with me because I was sick. It can never take away from me those moments I knew Mom loved me. It can never take away the millions of diapers she changed and the many meals she prepared for us. The hundreds of clothes she ironed. This disease can never take away their heart or their love. One’s heart and love are the very essence of who they were and are. Not the mind!
This disease can never take away from you the day your husband asked you to marry him. It can never take away your first kiss, or the day in which the two of you came together and made children, (if you have them.) It can never take away the time the two of you for the first time said, “I love you,” and the many times after that. The list can go on and on.
What it does is take away the ability to process thoughts. It takes away the memory. That is why they get so confused such as getting into a car, as the whole concept is gone, as it is on so many other things.
We as human beings become “attached” to another being able to “process thoughts.” We become “attached” of being able to share the memories of their “minds.” We become so “attached” to that part of another, when it is gone we wonder, “What is left?” The “mind” is a terrible thing to lose. Worse than that though, is when one loses their heart. Worse than that, is when we fail to see “their mind is gone, but their heart is not.”
I firmly believe Mary, though they may not remember one thing from one moment to the next, they love. I am going to give you and example here.
My great grandmother also had it and did not know one thing nor did she speak for 20 years. I took my daughter who was two at the time to see her. My daughter started crying and Grandma said, “Come here baby, and sit in Grandma’s lap.” She started patting her lap with her hands. We were floored. The first words in 20 years. She never said another one. Somehow she knew this was her great-great grandchild and she was her great-great grandmother. She knew it because of her heart, not her mind. Her heart told her this “baby” was there and this “baby” was unhappy.
Trying to connect to their “minds” Mary, is like trying to breathe air that is not there. It is not going to happen. But…..
We can still have a relationship with them, through our heart’s. Theirs and ours. Your husband’s mind was not his completeness. Nor was my mother’s.
As I look back now after thinking about this, I wish I would have concentrated more on her heart. As that was and continued to be the entire essence of her being, until the day she died. It was not if she knew me, remembered where the bathroom was, how to cook a pot of beans anymore, etc… Alzheimer’s never took her love from me. As I look back, it does not even matter to me if she remembered she once had love or still had it. I knew it was there, because two days before she died and she knew nothing at this point, she raised up in bed, took my hand and kissed it. Never opened her eyes or said a word and never moved again.
I was not in my Mother’s mind Mary, I was in her heart, on that day. That is a kiss out of all she gave to me through my entire life, which will always be the most precious to me.
You know where the memory of that is held? You got it! Not my mind, but my heart. Love you and God Bless, SR
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I am glad it helped you. I have some more thoughts on this, but for right now I think I will let what was said today sink in for some time. Mary, you have my email, and you can email me anytime you want if you need something more personal. I promise it will never go any further. I have quite a few people I have met on blogs and we email one another.
I want you to remember something. There is not one emotion which you have had that I have not had myself. There is not one word you have said to someone or even to God, that I have not /said myself. There is not one thought you have had that I have not had myself. So nothing you tell me can shock me.
I will tell you a story. There was a summer Mary, I was so detached from everything through all of it. I was even detached from God. That summer I was standing out in my front yard many times, tears streaming, asking God, “Where are You?” I went to Mass during this summer and was praying, and Jesus came and sat down by me on my left and said, “I am here with you.”
Mary, I had detached myself so much I turned to my left and said, “You are here, but I am still suffering.” There was no joy in me at that time, not even though Jesus was sitting beside me and speaking to me. That summer was the hardest. So this is what I am going to tell you tonight.
I give you permission because you will not give yourself this “permission.” This week, put your hair in a ponytail. Minimal to no make-up. Most comfy clothes and shoes you can find. Get a life long friend and go to Dairy Queen or an ice cream shop and get a banana split. Three scoops of ice-cream with all the chocolate, whip cream, and nuts you can handle on it. Then laugh, Mary. Talk, laugh, and enjoy the life in the time it takes you to eat that banana split. Just thirty minutes this week, enjoy life, yourself, and your company. Then make it a habit. I promise you your husband, yourself, and your family will all survive it! 🙂 Love and God Bless, SR
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Much love and appreciation to you, SR!
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