Accepting your Stroke Survivor’s limitations
Yesterday, marked our three-anniversary post stroke. Each year, I look at the progress made and our ongoing challenges. I still hold out hope that we will be back to our pre-stroke life. Afterall, so many will share wonderful stories of those much worse that are doing better than before. Hmmmm! Not sure if I believe those anymore, I know they are shared to give us hope, but reality is so much different. At some point, we as caregivers need to accept the life change and the limitations of the Stroke Survivor.
This is much easier said than done – I know, I struggle daily with acceptance. For me, the moment of realization was at the yearly neurological exam. It went well but as I started to discuss the challenges, the doctor gently explained that the limitations and changes post stroke were now long term and that the focus should be not on improvement but rather management. Although this was hard to hear, it was exactly what I needed.
What is this new phase and how do we manage it? This week, I will explore this phase and share some information and tips on how to better manage your day to day. Please share in comments your experiences and what worked for you. We are all navigating this journey together.
Caregiver Stage: Realization and Acceptance
Not only did I need to embrace this new norm but so did my loved one. Together, we are working through the change. Again, it isn’t like a light switch that you turn on and AHA, you are accepting. Many tears and conversations take place but eventually you will get to a place of acceptance.
The key to my sanity was not to expect him to do the things that he easily did pre- stroke but accept what he could do now. I needed to find safe activities or household tasks that he could and wanted to do. I wanted him to be safe, but also needed to maintain his level of dignity and independence. Please order below: “Stroke and the Spouse” Book for additional information and support.
Refusal to accept limitations.
This is one of the biggest issues that we need to deal with. He refused to acknowledge his limitations and would put himself in unsafe situations. This led to many arguments and frustration.
o Potential unsafe situations: Shoveling snow, going for a walk alone, cooking on the stove, and not using his phone–uncharged, on silent, losing it or not checking texts or messages.
What can be done:
This needs to be addressed head on. Together, it needs to be decided what is safe. What I found was that I overreacted to safety needs, and he underreacted. Key points for this discussion:
o Honest assessment by both parties of what can be done safely. This is an excellent discussion to have with your healthcare provider who can help to set expectations.
o Fears about safety. Be sure to express how his health also affected your life (as the caregiver/spouse) and that unsafe activities could result in a larger impact on both of your lives.
o Your role as the caregiver (not the parent).
o NOTE: Expect anger and resentment from your loved one. This may hurt your feelings but try to keep in mind that they are angry at life and not you.
What helped me?
Everyone deals with accepting limitations and handles it differently. Speak with your healthcare provider about the best course of action for you. There is no right, or wrong way and you will find yourself fully accepting one day and the next you are right back at the beginning. This is normal and you are not alone.
What helped me…
Identified and then allowed myself time to grieve and adjust to our new situation
Began to build a life that nourished me. It is not selfish to nurture yourself and take care of your health and well-being
I had to let go of “what I think life should be” and accept “the reality of life”
Identify an action each day that supports your new life. Somedays, it is walking away when the limitations presented and then recommitting to the new way of being.
Focus on the present and what you both can do, rather than what you can't.
Ask for support from your family, friends, or professionals.
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!
Order “Stroke and the Spouse” to learn more.