“In order to love who you are, you cannot hate the experiences that shaped you.”
Past. February 2021
Stretching my hand out to his side of the bed, I felt the unsettling coolness of sheets unslept upon. My husband, Tad, hospitalized due to a stroke, was far away from me physically and mentally. I prayed he would come home whole and healed, but as the testing continued much was unknown. Groggy with sleeplessness and worry, I wondered if an empty bed was my future. “Please God, I’m not ready to lose him. Please let him come back to me.”
The silence was shattering.
After many, many, tests and evaluations, the doctors determined Tad’s stroke had occurred in the left frontal lobe of his brain, which caused a condition known as aphasia. I learned that aphasia affects a person’s ability to communicate. In Tad’s case, the damage involved both his verbal and written skills.
In the big scary world of strokes, the diagnosis left me somewhat relieved. Tad didn’t have the “left-side” paralysis my father suffered when he’d had a stroke years earlier. Therefore, there wouldn’t be a struggle to relearn to walk or use his arm and hand.
And Tad is a fighter. Over the years, his determination in accomplishing goals left me endlessly inspired and impressed. Find his voice again? Write? He could. He would. I was a believer.
After four days in a Twin Cities hospital, Tad’s next step was time at a rehabilitation center. The doctors felt it would be a short stay…mostly time to assess his need for ongoing speech therapy and monitor blood pressure swings.
I was excited when told the facility recommended was only ten minutes from our home. Yay! I could spend as much time with him as possible, thus easing yet another period of transition.
I was wrong, however.
Two words: Covid restrictions.
Upon our arrival at the rehab center, I was asked to fill out the necessary paperwork for his stay while Tad was whisked away to his room. As the nurse pushed his wheelchair down the hall, he looked back at me with concern and confusion, and my heart hurt.
“What room will he be in, so I can see him after I finish?” I asked.
The administrator looked a little uneasy.
“You cannot visit him for two weeks. It’s our policy to quarantine new patients as part of our Covid policy. Weren’t you told?”
Panic began to arise within me. “No, I wasn’t told. I need to say goodbye and explain this to Tad,” I said. “I have been with him every single day at the hospital. He won’t understand why I am leaving him now.”
The administrator sighed. “In rare situations, we make an exception for a visitation. But let’s give it a few days to see how he settles in. I think you’ll be pleasantly surprised how quickly he adapts.”
What happened next is a story unto itself, which I won’t go into here. Let’s just say I quickly found out Tad was pacing the halls of the rehab center, shouting my name, as he tried to find me. The staff put an ankle monitor on him out of concern he would try to “escape.”
So much for being “pleasantly surprised at his adaptation.”
I made a covert–as in without permission– visit to see Tad as soon as I heard what was going on. (And for those of you worried about protocols, I did sign in at an unmanned desk and was masked and sanitized.) Although a brief visit, it was enough to explain, hug, and underscore that he was not alone. I was just a phone call, and a ten-minute drive, away. He calmed down, and so did I. Sorta.
Tad ended up staying in rehabilitation for two weeks. I was surprised when, at that time, they asked if I wanted him to come home. They could extend his stay with them or perhaps make “other arrangements.” To be clear, I had no idea what life would be like living with a person healing from a stroke, but I knew Tad. I knew the depth of our love. So, no way, no how, did I want anything other than for him to come home.
–I was praised for getting Tad to the ER as quickly as I did. Some say the sooner a stroke is diagnosed and treated, the better the outcome. However, one doctor said a stroke is like a severe summer thunderstorm. It hits, and then you are left with the aftermath. There is no way of limiting its damage. Either way, I’m glad I acted when I did.
–Ask a bajillion questions. The answers are not always consistent, but the more you know, the better you can make decisions suitable for your circumstances. For example, I wish I had known about the Covid restrictions at the rehab center ahead of time. I would have done things differently and saved us both a lot of pain.
–Allow help. Okay, I say this with my fingers crossed behind my back. I am horrible about asking for or accepting help. When our neighbors found out Tad had a stroke and that I had said nothing, I was chastised. “We would have taken care of your pets, brought you food, taken out the garbage!” I explained that is not how I’m wired. They, in turn, lovingly said to “get over myself.” They have a point, but…
–The power of family/prayer/friendship. The outpouring of support kept both Tad and me from falling off the cliff. But again, I had to drop my barriers to let all that caring in. So, don’t be me. Be smarter!
–Dig deep, be patient. Honestly, it was hard to talk with Tad on the phone and hear his confusion. In some ways, it felt as though a stranger was using his voice. I would have to repeat myself multiple times or rephrase words hoping he would better grasp the content. Even then, he was lost, and it scared me. I had to remember that his brain connections were damaged. It would take time and therapy, but it is absolutely possible to rebuild, reroute, and reconnect those passageways.
–Use available outside services. After Tad came home, we were able to continue his speech therapy as an outpatient service. He was given prompts, tools, and exercises to find words and to clarify his thoughts. The gains were impressive then and continue now. I’m sure there are many other services, too, so ask for what you need.
As I write this, it has been almost six months since Tad’s stroke. We have found a new rhythm and new dance steps. And trust me, I rejoice every day that the music plays on for us.
That said, life is different, no question. His ongoing healing leads to moments of frustration and miscommunication, foibles, and laughter. I have cried many, many times, and so has he.
There are moments when I look at him–usually after he has done something that the “old” Tad would never have done–and say, “Please come back to me. I miss you so much.” This, of course, makes him sad, and he replies, “I want to. I really want to, Honey.”
And there it is.
It’s totally, entirely strange and disorienting to be living with the man I love and not be living with him. He’s there, but he’s not, but he is.
Throughout the years of our marriage, intimacy and romance were top priorities. So, imagine my loneliness after Tad came home from rehab; I would hug him, kiss him, and reach for his hand. Tad allowed my attention but did not seek it or return it.
Again, he was right there!
But he wasn’t.
And then, one late night about two weeks after his homecoming, he got up to use the bathroom. Upon his return, as he slid into bed next to me, he kissed my shoulder and fell asleep. He. Kissed. Meeeeee. I laid there crying, the pillow absorbing the bulk of my wet joy and hope.
Since then, our relationship has continued to regain strength. At Tad’s suggestion, we have gone on date nights, and recently he insisted on going with me to Victoria’s Secret. “Make sure the bra you get is a sexy one,” he said. And then smiled that wonderful familiar, “wink-wink” smile.
In other areas of our life, Tad has begun to take on more responsibilities as well. He walks our dog. He empties the dishwasher. He puts out the garbage can and mows the lawn.
Nonetheless, what he can do now is far from the pre-stroke household divisions we took for granted. And that is a challenge.
He wants to do things he is not ready to do cognitively, and I have to say, “ no,” over and over. Too often I feel like an evil nurse instead of his wife and partner. How do I temper his enthusiasm without stealing away his growing confidence? How do I say, “Be patient” repeatedly and still have him hear it? I don’t have those answers.
Because right now, even though there is an impressive improvement, he’s there, but he’s still…not.
–Celebrate the little wins. Acknowledge more and criticize less. That sounds like a no-brainer until you are slogging through a swamp of frustration. Take a breath and remember that neither one of you chose to be in this situation. If you can focus on what’s going right instead of what’s going sideways, you’ll feel sooooo much better.
–Before a crisis like this occurs, know each other’s online passwords, security questions, and social security numbers. Oh my gosh. When I had to start paying the bills–a task he always handled– I realized I didn’t know Tad’s passwords. And if I tried to reset the password, some companies asked security questions. Even if I called the company to explain that Tad had had a stroke and I just wanted to pay our bill, they would say, “Sorry. We need his permission.” I also had to pull together all our tax information since the stroke occurred before he had filed. Where did he keep the figures and paperwork? Tad filed things that made sense to him but not to me. I survived, but it is a wonder I’m not staring into space and babbling. Seriously. It was hell.
–Check to see if both of your names are on your household accounts. I ran into a situation where I was blocked from even discussing a bill because the account was in Tad’s name only. When I asked Tad why such a mundane bill was in his name alone, he said it was an unintentional oversight on his part. Ah, it’s the little things that trip you up!
–Do you have power of attorney for each other? It might be a great idea to get that task done before anything like a stroke happens.
–Ongoing care for Tad. Besides regular medical visits to check his blood pressure readings and medications, we opt to get acupuncture treatments, chiropractic treatments, and supervised supplements for brain development. They are working for us. He spends quite a bit of time reading—plot lines are starting to make more sense—and sleeping. Both provide stimulation and healing for his brain.
–Ongoing care for me. Okay, I am not going to lie. I once again suck in this department. I do, however, try to get out for a long walk every day. It clears my head and brings me peace. (Although it is hard to leave him unattended without guilt and concern.) It would also be great to ignore chores that are an energy drain—do I really need to vacuum right now? — but I haven’t reached that point of enlightenment. Don’t. Be. ME.
–Keep a sense of humor. My mom used to say when life gets hard, you choose whether to laugh or cry. Right now, we are doing both, but the laughs are starting to outweigh the tears.
–Exercise. For some inexplicable reason, Tad suddenly became obsessed with wanting to ride his old bike. My gut told me that was a bad idea. His balance isn’t good, and if he fell on the pavement, he could easily break a hip or any other good and necessary body parts. Tad wasn’t listening to me, so I engaged the help of Tad’s son…a person he does hear. Anyway, the compromise was to get an adult trike. At first, Tad felt his ego wouldn’t allow a trike. But now that we have it, he’s regaining a sense of independence and freedom. Tad glows when he comes back from a ride. And then I glow because he’s glowing.
–Boundaries. All those extraordinary, loving family and friends I mentioned? They want to help, gather, and visit. Sometimes I am simply worn out from the extra tasks and mental aerobics involved as a caregiver. It is tough for me to say no, but if I do, when I do, it’s because I’m doing my best to thrive under the circumstances. We adore you. Honest. There are times you can help me/us most by understanding your visit adds a lot of stress, and I need to say, “Perhaps another time.”
–Believe. I can’t say it enough. You get more of what you think about, so I believe Tad is a whole and healthy person emerging from a blip known as a stroke. We will be stronger from this chapter. And! Although he is not the same, he is amazing…just in different ways.
My heart tells me that the lessons in progress are propelling us to where we need to go. We are together, we love each other, and we are committed to keeping it that way.
Tad continues to heal. I AM IN AWE when I think about how far he has come in the past six months. On the day of his stroke, Tad could not remember my name. Now he fills in the blanks for me when I’m having a menopausal moment. Our bodies are, indeed, miracles capable of reversing and redirecting injury and disease.
In countless ways, our life has been a fairy tale. Therefore, if fairy tales are written in the stars—all mystical and magical and based on desire– I do not want to reach out to his side of the bed and find it empty ever again.