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My name is Kathi I have been married 46 years to my high school sweetheart ...We were a very active going dancing most weekends even at local dive bars... Spent lots of time in Palm Springs just having a good time.
He suffered a stroke from endocarditis in July. They did not know what was wrong for awhile, checking kidneys etc...even thought was a auto immune issue, He has a tissue valve he got 12 years ago he went into afib while having a biospy for something else.
Then they checked his heart finally and found he endcoarditis and by then it was bad............While waiting for surgery he had a bad stroke. That was in July, he came home for awhile and we realized even with help was not working. So he has been a facility for rehab for the last month. It has been good for PT but emotional he is a constant mess...between being lonely and being with my older people no one to communicate with.
I joined this group so I could talk with other caregivers who can help me understand all my feelings good and bad. I feel quilty and anger all at the same time.
How do i deal with the emotions from him saying he is ok to blaming me for being there. I feel like I walk on egg shells all the time.
So glad to be a part of this reaching out to everyone for a connection.
AHAASAKatie, October 12, 2020 9:19am EST
Good morning and thank you so much for trusting us enough to share what is happening to you and your husband. Stroke recovery is very ******* both the survivor and the caregiver. You have the right to be exhausted, grieve the life you had before, and experience frustration for having to make all of the decisions, including keeping him in a rehab facility where he can receive treatment.
I can share with you my favorite article on caregiving from Huffington Post When Caregivers are Honest it Makes Folks Very Uncomfortable. I can also provide the information on Life After Stroke and choosing the right rehab facility. Not knowing your situation, I am not sure if there are other rehab facility options, but maybe there is a different place that is a better fit for him.
In the meantime, please know we are here to support you.
JKViggiano, October 12, 2020 6:46pm EST
Hi Kathi. Sorry to read your story. Stroke is so ******* everyone. My husband was 51 when he had his stroke and finding survivors in our age group was pretty much impossible. it was lonely for both of us. We joined a brain injury support group for a couple years--they have people of all ages. I have a couple things to share given our experience in those early years.
It took me awhile to understand the severity of his brain injury. The physical stuff was obvious. The emotional/mental/cognitive damage took me some time to understand. He was mostly disconnected from reality for a couple years. He said and did childish things and were insulting and hurtful when he wanted to be bad or wanted his way. A moment later he could be docile and apologetic. It was a rollercoaster for a couple years. He needed wife/mother/caregiver at any given time and I had to figure out which one he needed and when. On more than one occastion, I had to tell him that he was not allowed to talk to me that way and made him apologize--just like a kid! It was a very difficut time. The good news is that he got better. Slowly but surely he came back to reality and got a grip on his emotions and actions.
The stress of it all nearly took me down. Everything was on me--the kids, my newly disabled husband, his recovery, paying the bills, keeping the house together--everything fell on me. I am a Christian. When it became clear I could not handle it all, I surrendered all to Jesus. I could only do my best, everything else was for Him to carry. And everything was better. I let go of my illusion of control and focused on doing the best I could in whatever I had to do. I continue to pray that God will do the rest. It is freeing.
My husband will always be disabled but he has recovered far more than anyone thought possible. We said goodby to our old life and decided together that we would build a new life. It was hard but it is good. Give yourself some grace. These are difficult times for you. You will make it. Good luck.
janecrisler, October 19, 2020 11:42am EST
Hi Kathi! Know the "eggshell" component of living with someone with heart disease. My husband is a blamer too. Let's talk sometime?