Life after a stroke is different than what we plan. The dreams of pre-stroke need to reimagine for both the stroke survivor and the caregiver. Visiting recent stroke patients and their families, one some of the primary questions are “How is life for you and your spouse post stroke? What is your relationship like? How did you adjust to the new roles? How do you stay upbeat and positive for the stroke survivor? Am I always going to be a burden? and will it get better?

“Behind every chronic illness is just a person trying to find their way in the world. We want to find love and be loved and be happy just like you. We want to be successful and do something that matters. We’re just dealing with unwanted limitations in our hero’s journey.” – Glenn Schweitzer

This week, I would like to share some thoughts on each of the above questions. This is what helped me and what I share with stroke survivors and caregivers. You will find your way, but it helps to see how others handled the change.

How is life for you and your spouse post stroke?

It has changed in many ways. Post stroke, I have become the primary decision maker and alone making decisions on our life together. Although, he provides input, due to his limitations he really leaves this all to me. Initially, I could only see what we have lost versus what we still have. This takes time and patience for both.

What I know now, post stroke, is that life can change in a minute.

What is your relationship like?

We have been married over 40 years and like all relationships we have good times and bad. Post stroke, it is less of a partnership and at times I feel like I need to walk on eggshells as to not cause frustration or anger from my spouse.

They way that you handle conflict, emotions, and life decisions post stroke changes. Conflict and normal differences take on a new meaning. The survivor wants to be the person they use to be but that is out of their control, and they can get angry at you. I now pick my words, comments and discussion with much more care as to not upset my spouse. This takes a toll on the caregiver as you really have no one in your home that you can talk to or just vent without hearing “I am sorry I am a burden.” They are not a burden but hearing that pulls at the heart strings.

How did you adjust to the new roles?

Many of you may remember every time Charlie Brown would go to kick the ball and Lucy pulled it away. That is how I felt most days, I wanted so badly to hold on to the past that I would set myself up for failure. Asking him to do or be a certain way when he was not capable.

This is still an ongoing process but over time I have learned a few tricks. The task that he was able to do, I had to learn. I joke that google is my second husband. I watch videos on different task, I have to ask others for help and lastly, I needed to realize that I did not have to do 100% and that he still could do many things.

Taking on the new role will not be the same as the way your survivor would have done it or you may end up doing it totally wrong but that is O patience and yK. Just do your best.

How do you stay upbeat and positive for the stroke survivor?

Don’t fake being upbeat or positive when you just can’t. Being real with the survivor is critical. My spouse knows when I am faking it and he then feels more stress that he is being an additional burden. Share, Share and share again with the survivor. My spouse has appathy and doesn’t respond to my concerns but just saying them outloud helps.

No relationship is upbeat and positive whether pre or post stroke - so don’t give yourself unrealistic expectations. What does help us is laughter. We don’t take the stroke limitations as a death sentence but laugh when things go wrong, or he says something inappropriate.

From survivors. Am I always going to be a burden?

No, you are not a burden but just as you need patience, support and understanding from us we also need that from you. We get that you are angry or frustrated with your limitations but saying “I’m sorry I took that out on you” or “Thanks for loving me” and” I love you” Those three phrases go a long way with your loved one and takes the “burden” away.

Will it get better?

You will adjust and find a new journey and relationship post stroke. Is it better or worse really depends on the extent of damage and the desire/ability of both to work on the relationship. For us, I find that we appreciate everyday activities and time more than pre. We know that life can change in a blink and that has made us more loving and caring of each other. The survivors’ expressions of love will be different, and you will need to adjust. Not able to talk, express or show displays of affection as they once did is a barrier for a relationship.

During support group time share your frustrations and you will be happy with the support and ideas that come forth.

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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!

What is life after stroke really like for the caregiver?