As I begin to write this letter I am feeling the consequences of being a ten year dementia caregiver. I often think about the fact that it is never going to get better. My happiness now depends upon whether or not my husband smiles or doesn’t smile. When I first awaken him while sleeping in his chair, if he smiles, I know it is a good day. If he doesn’t smile, and has trouble getting up out of his chair, then I know that it probably won’t be such a good day.
I also think about how physically and emotionally tired I am after 10 years. I remember hearing that this journey is a marathon. I’m making a note in my journal right now to RSVP to the next Family Care Cafe. I have to remember to take care of me too.
My daily routine now is focused on the best ways that I have found to interact with my husband. When you have someone with dementia who just sits all day long, or just stares into space, you want to find ways to communicate with them.
Two wise people, who work at the place where my husband now lives, noticed that I was talking about him like he wasn’t there. I felt it was alright because I thought he wasn’t aware of things. Like they pointed out, he can’t verbalize, but if you watch his eyes they will sometimes react to what is being said.
I am so appreciative that they have made me aware of this. Now I talk to him more like we used to years ago. Even though he doesn’t answer, I have noticed that he probably understands more than I had realized. He especially likes it when I talk about our children, grandchildren, his brothers and sisters, and when we dated.
Sometimes I bring a special photo album I made to help us reminisce. Sometimes we just sit quietly together and smile at what we see. I recall hearing a dear friend tell me there is a time for doing and a time for being. It is ok to be quiet and just to “be” at times.
Every day we go for a stroll in the yard where he now lives. Our walk includes petting the dog, looking at the garden, I fear my husband is losing his mobility. My husband lives in the memory care home. The residents there are especially appreciative of any kindness shown toward them. Being able to help these residents smile cheers me up.
I realize that this special group of dementia caregivers, residents and their family members have indeed become “family” to us. I look forward to my visits to feel that special connection and love. We all care about each other. Certainly we go through challenges as my husband’s disease progresses but I know support and care will always be there for him and me. That means so much to me.
I can tell people who have gone through what I am going through because they come up and hug, or give other positive physical touches, as they talk to my husband. Even if he doesn’t respond, people who have even more experience with dementia will keep trying to get his attention through touch and verbalization.
Others don’t say anything, and that is also OK. Before my husband had dementia I did not know what to do or say to someone with dementia. Hopefully this letter will help others to better understand and know what to do.
The ultimate activity for my spouse with dementia is music. I can honestly say that music really has helped retain what is left in our relationship. We especially enjoy ballroom dancing and have been taking dancing lessons for the past few years. My husband smiles more when dancing than any other activity.
With the progression of the disease even dancing is becoming a more difficult activity. Our turns and our steps are now slower. However, he still has a bounce in his step when he hears the music. I also believe that it helps his balance. We will keep on dancing as long as we can.
I break down emotionally occasionally, but that’s OK because it just shows that I care. It also helps all of you to better understand what it is like to be a dementia caregiver in love.
Helping my husband has made me a better person who now realizes, more than ever, the importance of doing things with loved ones. As his caregiver, happiness is when I make him happy. As I say once again, I live for his smiles. And I try to memorize each one in my mind.
Music makes my husband smile along with silly animal pictures, hugs, little children, and ice cream. If I had only known the power of ice cream when we were dating I would have forgotten the flowers and candy, ha, ha..
And not just any ice cream! His favorite, mint chocolate chip, is always in the freezer. One day a caregiver decided to put together his two favorites, mint chocolate chip ice cream & root beer to make a root beer float. What a special moment of joy for him and a moment for me to always remember 🙂
Adjusting to his life changes is not easy and causes me some emotional strain each time some new problem develops. A dementia caregiver becomes a constant problem solver as the person with dementia’s condition evolves and continues to deteriorate. You can do more than you think you can. You can make a difference if you are doing it to help others and not just yourself. Do things for both others and yourself and you will have those internal good vibrations that will make your life more enjoyable.
Friends and relatives like you are a great support to both of us. I have found that if I ask, people will help. I know I have rambled on, but this does help me to cope as a dementia caregiver.
This happened about a year ago when we were dancing a slow dance in our living room. He squeezed me like he used to do when we were dating. Gosh, that is such a small, but powerful memory. I will always treasure that moment, that memory.
My husband passed a year and half ago but I wanted to share my story to possibly help others.
PS: I know my husband, is also appreciative of your empathy these past ten years.
