shocked but hopeful

I put out a call for stories

Elizabeth Hawkins shares with us what it’s like having a fast-declining father who unfortunately deals with an unclear number of dementias. As raw and real she is about the effects on herself and her surrounding, as open she is about the lesson she’s learnt and you can, too.

Question: What is your relation to the person with dementia?

Answer: He is my father. I am an only child. My parents have been married for 45 years and my mother is his primary caregiver.

Q: What form of dementia do they have? When and how did it start showing?

A: My dad’s diagnosis has been difficult to pin down. He has been diagnosed with vascular parkinsonism, but also frontotemporal dementia. Some of his doctors think he may also have Alzheimer’s disease because of the rapid decline he has experienced.

His older brother has Lewy Body Dementia, which seems like more than just mere

coincidence.

We first noticed it when my father abruptly quit his job in the middle of the year and

decided he wanted to “retire”. He loved working and always said he would work until

he was 80. Then one day he came home and said he didn’t want to work any more.

After that we noticed erratic driving (fender benders, not being able to work the

accelerator and brakes). From then on it has been a huge decline. He was first diagnosed at 64 and is now 68, although we believe these symptoms may have been present for longer but we didnt know what to look for. 3 years after initial diagnosis, he can no longer drive, operate a phone, and has become incontinent.

How was your first interaction with them upon realizing they were different from before? Were you scared, confused, shocked, sad,…?

The hardest thing is that the memories of who they *were* begin to fade away and are replaced with memories of who they are *now*.

My dad was a marathon runner, a school superintendent– he rode his bike 10 miles a day and loved nothing more than to take me to the beach or be outside. He was brilliant, artistic, and hilariously funny. He would put sheets on his head and bob around the house making ghost noises, he let me paint his fingernails and toenails, he played Barbies and made cookies and called me every single day to check on me. We had inside jokes, special nicknames, and traditions that belonged just to us. Now, those memories are fading into the background. I feel them slipping away. My dad cannot use the phone, he cannot tell time or make his own food. He is incontinent and does not remember my baby’s name. This ghost that lingers in the living room, confined to a recliner, watching endless re-runs — this is not my father. This is a shell of a man who was my whole world.

Every day is like a funeral.

In the beginning I was shocked but hopeful. My daddy had always been so vibrant, fit and smart. I knew that vascular parkinsonism was slow progressing, and my mom and I were optimistic that he might live a normal life span. Now as things have spiraled out of control since his initial diagnoses, we are living a nightmare. Mostly, I just miss him so so much. He is here physically but he is not with me anymore.

How does the disease affect the way you interact with that person?

My daddy used to call me two times a day. He was the first person I called with advice, good news, to figure out how to handle the hard things in life. The last time my daddy called me on his own was over a year ago. I miss his voice, his smart jokes, his beautiful handwriting. I miss watching him fry oysters in the kitchen, I miss his laugh.

In his place is a figment– a gray spectre fading away in front of us.

What would you tell people who just found out somebody they care about has dementia?

I would tell them to find a support group immediately. It took me almost 5 years to realise I needed outside support. I am in therapy and read a lot of books and message boards about dealing with grief and dementia. Be prepared for it to change your relationship with your other family members, too. It has almost destroyed my relationship with my mother.

Interviewee: Elizabeth Hawkins (pseudonym)

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