Dementia Has Struck Our Home

Dementia Has Struck Our Home

Dementia is a deterioration of the brain and the most commonly recognized form is what we know as Alzheimer’s Disease. Very little is actually known about the mechanisms of this disease, the causes, and all we really know are the side effects. We now finally have hope with a new frontline of drugs hoping to slow the progression of this disease, but as of now no cure is on the horizon.

Never had I imagined celebrating my 37th birthday when my 36 year old husband has recently been diagnosed with early onset Alzheimer’s disease. Is it related to his accident and TBI? We don’t know. I know that this disease is killing my family.

My teenage daughter, Isabella, is angry and acting out. My husband has filed for divorce as his way to protect me and is pushing away the people who love him the most. I do not want a divorce, but I won’t fight it. My concern needs to be his peace of mind and I do not need a piece of paper to tell me that man is my husband and father to our 3 beautiful girls. A divorce will change nothing.

We’re all still in shock and I do not know how to snap us out of it. I’m a psychiatrist, but you do not treat family for a reason and it’s more than ethics. I can’t be unbiased here. I can’t be the cancer patient who wanted to preserve my right to die and be the wife who says you can’t give up Luke. I feel like 2 separated people in one body attempting to rationalize the unthinkable. It can’t be done. It can’t because none of us know what is in store 3, 6, or even 9 months to a year from now. That is the level of accurate predictability we have of saying what will occur during the course of this disease.

My heart is broken as I watch my husband feel defeated when he has fought so extremely hard to be where he is and to pull me through multiple rounds of cancer.

I noticed significant changes to his personality since I underwent a kidney transplant as the final treatment to my cancer. I did not notice a regression in his cognitive function and that bothers me to no end. Was it not presenting as a symptom or was I so wrapped up in my own problems that I chose not to see it? I can not switch off being a physician. I have lived with and through too many health issues in my life and with our family for me to not figure out if the simplest of sneezes is a dust mite reaction, a possible sinus infection, or a virus. I am almost OCD about it, except it’s the same as the saying “it’s not paranoia when they really are after you”. My life is a constant battle of checking symptoms and marking the progression and regression of diseases. Now we have one more to add to that list and that’s all it will be to me. I will love him. I will care for him. I will be his wife paper or not this ring will not come off. I’m glad we have answers to his behaviors, but why this?

I can not break down. As much as I want to do so I can not. I know in this moment my husband is too frozen in fear of his uncertain future to move. I need to do my job a wife, a partner, and as a physician to pull us to hope.  I cried quietly for 2 hours and pulled myself together. I called every neurologist I have ever encountered and scoured medical trials for every possible treatment. We will pursue them. We will push forward as a family. We will fight you dementia and you have never been up against such a battle before when you knocked on my door. I love my husband. You can take many things, but you will never touch the love in our home.

4 replies
  1. Robin J.
    Robin J. says:

    I am so sorry to hear this. There are 1 million challenges ahead for your family, and I know it can only feel incredibly unfair after the million challenges you have already been through. The one thing I would say is that, if you can, get legal counseling about the impact of a divorce on your ability to help your husband with both his independence and his future care.

    In the US, the legal position of a spouse is very different than that of a former spouse, no matter how much you love each other. Doctors will speak to both of you differently when you are legally still a family. i’m sure that right now there is a desire to have as little conflict as possible, and that speaks very well of both of you, but some decisions may take research and expert advice to calculate the impact on both of you, and on your daughter.

    It may be that a divorce is the best thing for your family, but there are many different aspects to take into account, including additional stresses on Isabella.

    I imagine that given your profession you already know all of this, and I admire your courage and your willingness to share your story publicly. I just want to give you a little support for making sure that any decisions being made right now will be the best ones for your daughter and yourself in the long run.

    Many people who get a diagnosis that will lead to them being in a wheelchair go through similar feelings and call off weddings or decide a divorce would just be easier, so I’m sure many of the readers here will have had some of those moments. I know it must seem 1000 times more difficult with Alzheimer’s, and so I cannot say with any confidence what the right answer will be. But I do feel confident that the journey to that answer needs to be measured and needs the help of experts who can have objectivity and think about all the many variations.

    I will keep you and your family in my thoughts and prayers

  2. mark55spark
    mark55spark says:

    This is an amazing love story. Yes, it makes you cry but at the same time it brings joy to know that two people care and love each this much. It reminds of the story of the “Magi”. But in a last word to the wise of these days let it be said that of all who give gifts these two were the wisest. O all who give and receive gifts, such as they are wisest. Everywhere they are wisest. They are the magi.”

  3. Jessie
    Jessie says:

    Thank you Robin for your advice. As a forensic psychiatrist I do have a law degree and I retain legal power of attorney of Luke to make medical decisions for him. I am doing my best to protect the children as much as possible from his issues and making sure they are receiving counseling. Thank you all for your support and prayers.

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