The exhaustion of being on pins and needles?
This week on my visits with other stroke survivor caregivers, I noticed the emotional exhaustion of being on pins and needles waiting for the next issue to arise? It is never a matter of will it arise but rather when and how severe. I was with a gentleman that shared, “I thought I was finally at a place where we were moving forward and she had a second stroke. When will I be able to fully catch my breath? I can’t seem to prevent issues.” His comment caused me to freeze in my tracks. I had just had the same thought a couple weeks prior when my husband developed a cardiac issue requiring follow up.
How do I handle the medical uncertainty of their ongoing medical issues? Do I have days that I just want to scream? Am I continually surprised when a setback occurs? Do I hold it all in so that I don’t burden others? And last, Do I get so emotional tired that I just want to throw in the towel?
The answer is some issues I handle well and others not so well. The one word answer to the other above questions….YES!
Like you, I love my husband and want the best for him at all times. This is never the question. The question is how much can I handle and how can I continue to handle long term?
Literature shares information on Caregiver Fatigue or Burnout but this is different. Yes you may feel fatigue and burnout from time to time but this is an overwhelming dread of your future with your loved one. The relationship has changed. I hold on to those moments of laughter, wellness and companionship. Like you, I know that these moments will not last forever.
What causes this feeling of dread for the future…
Frequent medical issues for your loved one. Doing everything you can to maintain health and yet issues arise out of your control. Worse, your loved one not doing the things to keep themselves healthy.
Unrealistic Expectations: Believing they can single-handedly manage all aspects of their spouse's care or having unrealistic expectations about their spouse's health. The stroke survivor wants to be independent, healthy and their old self.
Lack of Control: Feeling overwhelmed by the uncertainty of future medical issues and lacking resources, time, or energy.
Social Isolation: Losing connections with friends and family due to the demands of how your loved one feels or is doing that particular day. Isolation is a common defense mechanism for them but challenging for us. Whenever my husband participates in an activity outside the home - I know that the next 24-48 hours will be lonely. He will need to sleep and shuts down all communication. I love when he has outings but sometimes the price paid is hard.
Emotional Distress: Dealing with the emotional challenges of witnessing a spouse's decline, experiencing grief, and facing conflicting emotions like love and resentment.
So how do we handle this uncertainty? What is the secret tip that we need to know? or when will your life ever feel “normal” ? I laugh at the word “Normal” = What is NORMAL???? I really don’t think anyone has the cure for us but I can share what has helped.
Talk to someone who gets it. The feelings we have are not easy to share. I know I feel petty or ungrateful that he is doing well and I am sad. Embarrassed because the situation could be so much worse. After all, they had the life changing event, which they have no control over.
When I talk with others in the same situation, I feel relief. Not that we have fixed anything but you no longer feel alone, honestly share without feeling like a “bad” person, laughing at the situation, praying for support together, or sitting in silence. Life expectations is a luxury and unrealistic. The truth - Enjoy the moment, let go of the expectations and hold on to what is for today.
I am available to be your sounding board. Visit www.strokecaregiverconnection.com to connect.
Thank you for visiting the blog because when we support each other, life can be easier.
My new book “Stroke and the Caregiver” is now available on Amazon. Each chapter provides additional tips and support.
Thank you for your time and welcome