Clues on what your loved one is thinking.
As a caregiver, we can get so focused on the needs of the loved one we are caring for that we never really ask, “What are you experiencing, emotionally?” When I was writing “Stroke and the Spouse”, my husband shared what it was like from his perspective. This opened a new avenue of conversation and a valuable perspective. I won’t share the whole chapter in the book, but I would like to share his “Helpful Tips for the Caregiver.”
Point of view from my loved one…
Life had presented me with circumstances that required me to be self-centered. Things were happening to me, and I was forced to deal with them regardless of whether I was prepared. Only later did I look back and realize what I put my spouse, family, and friends through and there will be guilt.
Leaving Lana alone to handle everything made me feel guilty, guilty about relying on friends to do simple things for me, even though they’re doing exactly what I would do if the circumstances were reversed. I felt guilty about interrupting my children’s lives. I felt guilty about being angry with God.
Eventually, though, I came to realize that I did not cause this. It is merely the situation it has forced me to endure. It’s no one’s fault.
So, I love my spouse and appreciate him for all he has done and will do for me on this journey. I’ve embraced my family and friends and tried to thank them for all they’ve done. And I thank God for having given me another chance at life.
Helpful Tips for the Caregivers
God blessed me when I had my stroke with Lana. She was very involved in my care and took great care of me. She was patient and supportive as I began my rehabilitation. She was excellent in caring for me during this time, but I observed others who were not as fortunate because their spouse didn’t have the same skills as Lana or maybe didn’t know what to do. So, as a third-party observer, I’ll try to give some pointers on how to deal with us.
Be patient with us
I have spent my entire life as an active and vibrant human being. And then, one day, everything changed. I still remember how life used to be and how I used to be. I am trying to accept that my mind still says I can do things, but my body has different ideas. Things that were easy for me and done with no thought now appear very complex.
I lose focus easily. When I appear to be searching for a word or something to say to answer a question, wait. If interrupted, I must think all over, and if you jump in and answer for me, I become frustrated and more isolated.
I used to participate in conversations, and I still remember how that goes. I am trying to get back there.
Be Kind
I saw a woman at rehab who came to pick up her husband. He had difficulty getting his coat on, and she constantly berated him for not doing enough to help her. I felt that nothing he did would ever make up for what she had to endure.
Remember, he and I did not choose for this to happen, and this is, unfortunately, the “worst” part. We still love you and remember the person we first fell in love with many years ago. We are sorry we are putting you through this.
Be supportive
While I was not starting at square one, it has set me back a long way. So, recognize my victories when you can, even if it is as simple as learning to stir coffee again.
There was another woman at our rehab center who had suffered a major stroke and lost most of the use of her right side along with a lot of her speech. Her husband came every day to pick her up.
One day, when he came in, she sat up and sang “Happy Birthday to You.” You could have heard a pin drop while she sang, and I don’t remember if she sang it very well, but when she finished, the place erupted in cheers. As the saying goes: There wasn’t a dry eye in the house. Celebrate accomplishments no matter how small they may appear.
Be positive
I have been susceptible to depression. I don’t mean to be a drag on finances, family, or friends. The caregiver needs to be attuned to the patient.
My depression manifested as apathy; I just didn’t care about things anymore. Lana noticed this and along with my physician, we addressed it.
When depressed, it’s hard to recognize depression, and when I am apathetic, it's hard to recognize apathy. It was important for everyone to look for the signs of depression in me, as this could hinder the rehabilitation process.
Please keep us safe
Despite what everyone might say to the contrary, I felt I was a burden, I didn’t want to be. In my mind, I remembered what I could do before and would try to do things (like drive) before I was ready. I needed to remember that my coordination was off, my reaction time slowed, and my muscles were weaker than ever.
Lana needed to save me from me so I didn’t experience some major setback like a fall or an accident. I was frustrated that things were not proceeding as fast as I expected. I would become angry with Lana because I thought she was holding me back. When I became angry, I hope she remembers the previous section: I am sorry.
Laugh with us and keep loving us
I can remember twenty years ago, but not last year. I guess as my brain is healing, it must prioritize data. All my life, I have had wonderful memories. Sometimes, to my detriment, I would remember things from as far back as grade school.
I cannot fully express the frustration of not being able to trust something you have always relied on. So, when I vent my anger and frustration, know that it is not you I’m angry with and that I am sorry.
Lana is the love of my life, and I know I cannot get through this without her. My sense of touch is different, and I feel things differently, but I wanted Lana not to stop reaching for me. Even if I didn't say so, I needed to know she was there. I needed to have normal conversations, even if it took a little longer to be understood. Even though everything felt so serious, I needed to laugh at the world and us. Above all, I needed to feel that there is hope that I would return to some sense of normalcy, even though that may take a long time. This life is a journey, not a destination, and I am so happy that Lana is on that journey with me, even if we can’t say it.
For more information on what worked for us, check out “Stroke and the Spouse” available on Amazon or follow the code below to purchase.
Stroke Caregiver Connection…Because you care!