Emotional Grief and Exhaustion
The past few months, I have been visiting caregivers at the hospital. Their loved one had a stroke within that week. They are trying to navigate this new life, exhausted and fearful.
I have been in your position and know the fear. Your loved one is different, and your relationship will change. Like you, I am grateful that my husband survived but that doesn’t stop the pain of losing the essence of someone you love. You can’t move forward and try as you might, you can’t move back.
The old ways of communicating with your loved one no longer work. Trust me, I tried this past week, knowing ahead of time that he could not fully participate but hoping that this time I could get thru and bring him back. He listens and shared he would try harder to connect and care but it is no longer something that he can do post stroke. We both cried knowing the truth.
As a care partner, what can you do? Even though you feel like you are ready to throw in the towel, you don’t and you can’t . That person that you loved pre stroke is still there, different but still loved and wants to show you love.
What helped…
Emotional and behavioral changes are a common effect of stroke. The medical term for lack of emotion is APATHY. Giving this effect a name doesn’t make it easier to deal with but at least you can understand what you are up against. Apathy is a decrease in goal directed activity, in caretaker terms - they no longer participate or care about everyday life. 1 in 3 stroke survivors are impacted by apathy. After some research and personal trials, the below list can help…
Per the American Stroke Association, Some survivors just don’t seem to care about anything. The best response to apathy is activity. Give your loved one a choice of what to do for the day. (Staying in bed usually shouldn’t be an option.)
This is very true and helpful. If allowed, Rick would stay home and read all day. What is starting to help me is…
Weekly list of items that I need him to complete
Not asking what he wants to do but rather offering choices of what I would like to do. For example: Today, would you like to see a movie or visit a friend? This allows some sense of choice but also allows you to participate in life.
Set a weekly activity that he likes - for my husband playing golf. Again, he will not initiate a game but if asked he will agree.
Letting go of the past as well as expectations for the future. I wanted him to participate and be back to normal more than he did. If he doesn’t want to participate, I won’t. We have always been “Rick and Lana” and now it is “Lana” Start to build a life for yourself.
I struggle with this daily. I enjoy doing things together but am realizing that he no longer processes our time together as before. Does he enjoy spending time together? Yes, but it is no longer central to his well being.
Work with the therapist to help you to work thru the loss of your relationship grief. Each one of us is different and what works for one may not for another. They are professionals and have so many tools to assist you.
Find activities that you can do without your loved one. Rick no longer enjoys eating out due to taste issues, I have a couple of dinner clubs with friends. I love to work in the yard and landscape, he likes the yard to look good but derives no pleasure in the process, I took a landscaping class and joined the local Botanical Garden.
Remember that before the stroke, you were not always the happy couple doing things together and you had different interest. YOU do not need to feel guilty living life when they would prefer to stay home. Many of friends, experience the same issues and their loved one has not had a stroke.