How are my kids dealing with their Dad's dementia?
July 24, 2009 by Holly
Amy
- Kyle
This isn’t easy writing about how my 2 kids are dealing with their Dad’s dementia because I am not sure. The bond between them is extremely close; they share their deepest thoughts and tears with each other–not me. I can only tell you my impressions and a couple of comments they made.
My daughter, Amy, 25, has had an easier time accepting her Dad’s condition than our son, Kyle, 27. She saw the signs a year before he was officially diagnosed with Frontotemporal dementia-she noticed his vacant stares and not recognizing his friends he has known for years. So when I phoned her with the news from the doctor, she was very upset, but not surprised. Amy has many sad, teary moments but hasn’t gone through the anger phase like her brother. Besides her own grief, she seems to be aware of my responsibilities, and the burden of caring for someone with dementia–along with knowing that I am losing the man I married 31 years ago.
Kyle’s journey is quite different. He has been slower believing that his Dad has a condition that isn’t reversible, and without a cure. He is extremely sad–his dad is his hero–but he is also very angry that his father, who is a very gentle man, has to suffer with this debilitating disease. Kyle regularly rants and raves about many things-his job, the government, his financial situation and more. Unfortunately, I am his scapegoat. During those times when he wants to yell at someone, he gives me a call. That was until this past winter when I reached my boiling point. During one of his heated moments, when I was holding the phone about 6 inches from my ear, I told him to stop. I said that I had enough of being his ’target’ and that he needs to find some other way to release his anger. I don’t know whether he heard how close I was to tears, or whether he finally understood that I am dealing with my own grief and sadness. Since then, Kyle seems to be more accepting of his situation. I have noticed that he is more patient when he hears me ‘boss’ (in his words) or tell his dad to do things, such as have a shower or change his clothes after a few days, or when I backseat drive–telling Dave to quit looking out the side window and pay attention to the road.
Yesterday while Kyle was helping me make dinner, he said he is surprised at how fast his dad is deteriorating. The more time he spends living at home, the more he understands how life for all of us is changing. He made a comment about needing to stick together as a family, and that he is glad that his dad is still alive; despite losing the one he has known all of his life. I am not sensing anger, rather calm acceptance. Kyle also made a comment about knowing that he may have the same gene as his dad, and every time he has a headache or forgets something, he wonders about it. Looking at my face and probably reading my mind, he said that he will be able to deal with it better–if and when the time comes.
As I am writing this post, I can hear Kyle getting the camping gear ready for him, and his dad to go fishing this weekend. It is like he is stepping into a parenting role, just like Amy and I.
There are more details about the kids, some pretty and some not so pretty, but it is too emotional for me to write it about them now-so I will leave that for another time.
Leesa on Mon, 27th Jul 2009 10:27 am
Holly,
Thanks for putting into written word the frustration some of us can’t even utter outloud.
Also, if it is any consolation, I believe men tend to be in more denial and for longer, than women in these situations.
Leesa
hollyeburne on Mon, 27th Jul 2009 10:47 am
Hi Leesa
It wasn’t an easy article to write. I am hoping that, if and when, my kids read it, they will understand that it is from my perspective. There are so many emotions associated with this journey; it helps me, and hopefully other people to know they aren’t alone on their journey with dementia.
Thank you for your comment and your observation.
Holly
Lauren McMullen on Tue, 28th Jul 2009 8:58 am
Hi Holly,
I am Lauren McMullen and I am part of the Overcomers, Inc team. (I did the Social Media Marketing Training). While working on posting articles to the Blog this morning I came to yours and I had to click over to your Blog because your story is so close to my heart. I lost my Dad in April from complications to Alzheimer’s, so I can feel your pain deep in my heart.
This is such a terrible disease and it tears many families apart. But like your family, mine decided right from the beginning that through the good and the bad we would all remember our goal and not let the disease tear us apart. We each had our moments of despair and anger and loss of faith but in the end we were all there for my Dad so he could maintain his dignity and live out his life as comfortably as possible considering his limitations.
There were some terrible times but there were also some wonderful moments that I will cherish until I am reunited with my Dad in heaven. Then we will be able to laugh together as we remember his “great escapes”. He holds the record for the most escapes off the locked floor where he stayed the last
1 1/2 years of his life. They were never funny at the time but looking back our whole family loves to see who can remember the most of them.
I wrote a tribute to Dad on my Blog right after his passing. If you would like to read it you can go to http://www.timefinder4you.com/index.php?s=alzheimer. If you don’t want to read it I can also understand that but I include it for your other readers.
I agree that we need to talk more about this disease and we definitely need to find a way to fund more research because as our population ages there will be more and more families stricken.
Like your son, I had the same worry about the disease in myself so I chose to have the test done for the gene and thankfully it was negative. For me it was the right choice, I certainly can’t advise anyone else on what to do but I thought that if I was positive I might enter some of the clinical trials for drugs to delay the onset.
The main reason I have posted is I hope to let others know that there are still some wonderful moments to life even after the terrible diagnosis of Alzheimer’s. To remain sane they need to stop and cherish them whenever they appear.
hollyeburne on Tue, 28th Jul 2009 2:11 pm
Hi Lauren,
I am sorry to hear about your Dad’s passing in April.
Thank you for your support and kindness in sending your blog link to me and my readers. It is amazing how many people/families are affected by Alzheimer’s and related dementias–I agree the numbers are rising significantly.
When I started writing a month ago, I had no idea it would open up my world to so many other people going through similar challenges. My goal, like yours, is to raise awareness for a better understanding, and increased support for this debilitating disease.
Congratulations on being brave enough to go for genetic testing and a huge congratulations for testing negative!
Thanks for sharing your story with me.
Warmly,
Holly
ps.I went through your website and I can see the day (hopefully soon) when I am going to contact you about a VA. Things happen for a reason!