In 2010, I started what I consider my second chapter in my life journey, as I married my soulmate and best friend. We had no idea that our first year of marriage would test our love and emotional strength in one another, with being faced with what one can call, a year of losses.
They say your first year of marriage is the best year as you are in the honeymoon stage so happy to be Mr. and Mrs. Our marriage started off with an amazing wedding in the mountains of Colorado followed by a honeymoon to Whistler Canada where we did what honeymooners are suppose to do, we got pregnant. We were more than thrilled as we were both ready to be parents. We couldn’t believe how easy it was and how we talked about wanting to have a honeymoon baby, well any family knows it is not that easy. At our 16 week ultrasound we discovered that the babies, yes twins, had stopped growing at 14 weeks and we were devastated.
That same spring we were made aware that my mothers cancer had spread to her lungs and the options were limited on what they could do. She made it very clear to us that she wanted to spend her last summer out of the hospital and enjoying the sun in beautiful Vail, Colorado.
When we thought things couldn’t get any worse, we knew something was happening to my father as his personality, speech and physical mobility were changing. After many doctor appointments of getting less than sufficient answers were were told he had dementia and it was either Alzheimers or FTD, frontotemporal dementia.
The name of the disease didn’t matter to me, what mattered was my 57 year old father who had just qualified and completed the Boston marathon a year prior was struggling to walk, have any empathy towards the women he was happily married for 30 plus years who was dying of cancer, and he was turning into a man I didn’t know.
As the baby boomer generation turns the corner into their older age, I know I am not alone in young adults who will have to start caring for our parents while we are starting our own families. Battling dementia, as I will refer to it because we still don’t have a clear understanding from doctors on what my father has, the first frustrating hurdle you will face with this disease, has been a harder journey than watching my mother sit through CHEMO and Radiation. With a diagnosis of cancer, doctors can give you a clear understanding of what your options are for treatment, with dementia there is not much you can do what sit and watch your loved one as the disease progresses.
Dementia will test your patience to no end and will force you to deal with things you never thought you would have to with your own kids let alone your parent. I am lucky that I have had my sister to lean on each other through this as we had to take away all independence from our father as he was ordering hundreds of dollars of things off the internet that he couldn’t remember why he ordered them, hiring a caregiver as he became unable to operate a car and would decide on a whim to walk 10 miles to the library in the winter for a book, sending inappropriate emails to our mothers girlfriends, calling his daughters to help him find a women to have sex with, firing a care giver after my dad called the cops and told them the car giver was mis treating him, which turned out to be a lie my dad made up, while we are grieving with the loss of our mother.
No one will understand what its like to have to manage your parents life for them and have phone calls of your dad yelling at you for no reason other than he can’t remember where his glasses are and you last moved them, even though you live 1,000 miles away. Friends and family have been very supportive and helpful, but it is very interesting how the mind works, that my dad can put on a show when people visit him for an hour, but then he will almost crash from the exhaustion for using his brain at such a high level and we see the downfall and have to deal with the uncontrolled emotions after they leave, but in their minds, he is “doing great.”
This post is not to gain sympathy, but to help anyone who is having to deal with this horrible disease that strips away all you have loved and cared for in your parent.
You are not alone and venting and sharing some one the insane things we have had to deal with only helps us all, because there are times you just have to laugh or else there is no way you could survive this disease.
Maggie's Memos 