On April 1st 2016 my Father came to live with me to help give my Mom some time to regroup. It is hard living with someone with dementia and I knew it wouldn’t be easy. I’m a planner so I prepared the house the best I could with visual signs for the bathroom, making it harder to get outside doors to open, and set up weekly daycare at a memory loss center during the week while I was at work.
What I wasn’t prepared for was how to deal with his depression and the emotional rollercoaster. Depression is new for my Dad and being around someone who is sad all the time wears on you like dark waves on a stone. Over time the hardest of rocks will wear down and over time your strength will wash away and you will feel small and powerless.
I guess I should feel lucky that I haven’t had to deal with something like this till now. I went online to see what I could find on how to deal with depression:
1. Minimize your time with them.
2. Be in groups so it isn’t 1:1 conversation.
3. Change the subject or don’t talk too long on topics that make them sad.
Sadly most information isn’t helpful when that person is living with you. Or when they have dementia and we have the same conversations daily. I didn’t know what to do, how to make it better for him, how to protect myself and avoid getting worn down.
I’m an introvert so when I am sad I cry in the shower to cover up my depression. Dealing with my Father’s depression has weighed so much on me that even my morning crying sessions in the shower didn’t work and I ended up crying while waiting for my shuttle at work, I lost it at my Dr. appointment when they asked how I was, and when I got home I couldn’t hold it together in front of my 2 year old son. What good am I to anyone like this? How selfish it is to be sad and self absorbed that I can’t see all that I should be thankful for. What kind of example am I to my son by being sad? What kind of wife and I to my husband who has already sacrificed so much for me and my family?
Dementia is a sad death because it happens slowly and it feels like the person you love is slowly disappearing. Naturally, I went to my Dad to help me in this difficult time of my life. It was and will be my last “real” conversation with him as his daughter. I went to him with tears in my eyes asking for help, telling him I didn’t know what to do, looking for advice, and opened my heart. I felt like he understood what I was saying and we held hands and cried together as we talked about his situation. At the time we didn’t come up with a solution but I felt heard, I felt better, and I knew my Dad was still there for me.
A few hours later my Dad completely forgot the conversation.
I ended up talking to his Dr. and they suggested putting him on depression medication. I’m not a fan of taking drugs to fix things, but in this case I want whatever it takes to so my Dad can enjoy the time he does have. I want to protect my family from his rage, his anger, and myself from the sadness.
After just a few days I noticed a dramatic difference. He wasn’t angry, wasn’t taking long naps, no longer paranoid about people stealing his stuff, and found joy in the little things and activities. I was happy my Dad got this new perspective but that was only half the problem. I now needed to fix mine.
This new man wasn’t my father and watching him decline, slipping away, forgetting me and the life around him was heartbreaking.
I researched articles online about dementia and being a caregiver as a family member. I realized I was grieving. I was mourning the slow death of my Father and saying goodbye every day was taking a toll on me. I knew something had to change.
I found this great article that talked about letting go of who and what our loved one was so we can move on and love who they are now. When this happens we stop thinking of the loss, the death or who we once knew, but rather appreciate that they are moving into something or someone new. Someone we can still love, take care of, and appreciate for who they are. I love how the author says: “Dementia is not a living death. It’s an invitation to see how we can remain the same person yet take on new rather different characteristics”.
I am letting go of the perception I have of who he was or should be.
As a child, my Mom worked on Saturday’s since she owned a hair salon, so every Saturday I would spend that time with my Dad. We ate breakfast at a local diner and he always ordered eggs and hashbrowns with a small OJ. He would eat his whole breakfast and then drink his OJ at the end. Of course, I already finished my glass of OJ so he would share his with me. We spent the day in San Francisco, ice skating, watching a show, going to bookstores, visiting parks and having lunch at some little deli. Before heading home we would go to See’s Candy’s and hand-pick a bag of chocolates that never made it home.
My Dad was an engineer before computers and learned the new tools on his own at an older age. He was my inspiration for learning computers and instilled the importance of education. He was a Mason and I, too, followed in his footsteps and joined the Masonic organization once I could. My Dad was a provider and I never worried about money as a child or had to question if things would be OK. He was first-born French Canadian and traveled the world, read National Geographics and gave me the traveling bug and supported these adventures and dreams I had. In his 20’s he moved to the US, after finding a job via a newspaper. Later in his 50’s he bought a yacht we called “Odyssey” and we lived on it as a family for several years. Life was good and I love my Dad and I am thankful for the life he gave me and only hope that I can do the same for my children.
I’m sorry if you are on this journey with your parent or loved one. I want to say it gets easier but it doesn’t. I want to say that my Father passed away at home in peace but he didn’t. It got really hard!!!
My Mom moved up to Seattle and we both had our own struggle to help my Dad and each other. After being married to someone for over 40 years it is hard living a life without them.
The system America has for health care and seniors care is broken. Once my Dad no longer knew us and needed diapers we ended up moving him into one of the nicest places for memory care in Seattle called Merill Gardens. I visited just about every day and over time he really declined. I noticed he wasn’t being physically cared for and once I started to ask question or become an issue they started saying “this might be the best place for him”. Then one day the hospital called me and said my Dad was there and Merill Garden wouldn’t take him back.
In the end I was happy he got to hospice, listened to his favorite music, with flowers and my mom by his side.
Tomorrow marks the 1 year anniversary of my father passing away. I am no longer letting go and now just hanging on to the memories. * L