This morning it hit me that even when we have a few days without Alzheimer’s demanding our attention, it is never far from my thoughts. We live on the edge, the edge between denial and reality and love doesn’t ease the pain.
We are putting off the decisions that have to be made soon and I am aware of that. Our physician has advised our family to visit some of the assisted living homes in the area. He has explained that it will help us to narrow our choice down to one or two and, that there will be a waiting list. He says we cannot wait until there is a crisis and think we can just move Dad into a facility where he will be safe and cared for appropriately. He says that finding a place where Dad will be content is as much about personalities as it is about facility features. I know he is right but I am still putting it off. I suppose that I just don’t want to face the truth – that these places are full of people just like my Dad. I don’t want my Dad to be like all the others who have Alzheimer’s disease. Is that crazy?
No, it’s not crazy, it’s denial. Today I don’t want to admit that my Dad will soon become one of those people who babbles about nothing in particular or, doesn’t speak at all. I do not want to admit that my Dad will be locked behind doors that only open if you have a key. Today I am in denial but tomorrow I may have to deal with the reality. That’s okay with me, for today.
We all process our emotions differently and for those living in the shadows of Alzheimer’s disease, there is no right or wrong. Some will isolate and hide their tears while someone else might become active in a community support group. Some will write a blog while another may write poetry.
I am the blogger in my family. I cry while I write. It is my therapy. My brother is the poet and his poetry makes me cry too. He is also an artist. My brother is a private person. If he cries, he does it alone because I do not see it but his pain over losing our Dad, one memory at a time, is just as real as mine. We just express it differently.
I am blessed to have this man as my brother and I am sharing his recent work with you today with pride. I love you little bro!
My first thought this morning was about how invasive Alzheimer’s disease can be. It not only affects the daily life of the person who has the diagnosis but it infects all aspects of the family too. I am aware this morning that Alzheimer’s is always in my thoughts. It has become a consideration in almost every thing I do.
- What will Dad think?
- Will Dad understand?
- Will Dad be able to eat this?
- Who will stay with Dad?
Questions. There are always questions and decisions to be made to keep order and routine; the routine that is so necessary for someone living in the Alzheimer World.
Several months ago I wrote an article after thinking about my Mother. I returned to it this morning and realized that even then, Alzheimer’s infected my thoughts and took control of the conversation. I hate this disease!
To read the article, click here.
It hit me this week that Alzheimer’s is a disease that we will never fully understand. Sure, scientists in many parts of the world are studying the biochemistry and anatomy of the brain but there is one thing they will never be able to understand. No one, no matter how intelligent, will ever be able to climb inside the head of a person who has Alzheimer’s and know what they know. The person with Alzheimer’s will never be able to convey to us what it looks like or feels like inside their mind. But don’t you wish they could?
Watching my Dad slip a little farther into the world of Alzheimer’s this week left me asking myself what it must feel like to be him. He can’t tell me. No test will reveal the answers. I want to know if Dad is scared or if the fog has become “normal” to him. I don’t want him to be scared. It would break my heart.
Accepting that I cannot understand what Alzheimer’s feels like to my Dad is hard but my thoughts this week leave me feeling more strongly than ever that we have to find a cure. We must help fund the research in whatever small way we can. We have to make our elected officials aware of the impact this disease will have on our economy as our population ages and the incidence of Alzheimer’s or dementia increases. We must become advocates for those that have Alzheimer’s and for those who inner light will be extinguished in the future. We must!
We turned a corner yesterday when we came to terms with the reality that there is a stranger in our house. For the past four years, he didn’t really act like my Dad but he sure looked like him. I was comfortable calling him my “other Dad”. It wasn’t so bad having two Dads. They both remembered my childhood but neither of them could remember that I visited yesterday. I didn’t mind that so much.
So what changed, you ask? We finally got tired of fighting with my Dad to shave and wear his new denture. That’s the way it is with Alzheimer’s disease. In the Alzheimer’s brain, those things get lost in the fog. They no longer matter. In fact, they don’t even exist, not in the Alzheimer’s world. Our family will give in to this phase of my Dad’s disease. We won’t fight it anymore and will let it take my Dad and turn him into an old man with a face full of hair and no lower teeth.
For months we fought it, thinking that to give in would rob my Dad of his dignity but we have finally realized that we cannot win this fight. Alzheimer’s will win and a stranger will be living in our house and sleeping with our mother. But that will soon change too I’m afraid. No, I’m not afraid. I’m terrified. Alzheimer’s is stealing my Dad, bit by bit. And dignity? It’s no longer something we can worry about because Alzheimer’s has already stolen the part of my Dad that cared about his dignity. He is still loving and happy but that is all that remains of the Dad I knew.
We will live with the stranger as long as it is possible to maintain health and hygiene. We will continue to love him and reassure him of our love. It won’t ease the pain of losing Dad but it will help us to continue this journey, one day at a time.
Some days are days where few words are needed. They are days when one need only be silent and immerse their thoughts in feelings of gratitude. This is one of those days. My thoughts flow to:
family… health… .friendship… comfort,,, peace… contentment
I need nothing more and that is all that needs to be said. Thank you God. Thank you universe.