My experience with hospitals and serious illnesses was limited: You go to the hospital to deliver a baby, stay there a few days and go home with your beautiful gift; you break an ankle, you break a knee cap or damage internal organs from a fall. You go to the ER, surgery repairs the damage and you go home in a wheelchair to begin the healing process with the help of Physical Therapy. In most cases, “normal” life continues at a slower pace.
Life was good. The children were grown and I had a busy, rewarding job; Bob’s business was thriving and we enjoyed a nice routine that included travel, movies, meals out and church activities. The children and their families visited from both sides of the country for vacations and holidays. With more free time than I, Bob handled many household duties like grocery shopping, trash, cat litter, etc. He was also responsible for his own health and I knew that he was taking medications for Diabetes and High Blood Pressure, keeping daily logs of his vitals. He had a nice relationship with his doctor. I wasn’t concerned although I didn’t understand his lack of interest in proper nutrition. Bob was a very strong-willed Type A person.
“I’m having a stroke,” he yelled at me on my cell phone from his office, and then hung up. I took a deep breath thinking that he was certainly upset about something and called back. “What’s up? Are you ok?” He was able to tell me again, “I’m having a stroke.”
Stupidly, I could only say, “Call 911, I’m on my way.” He had done that but thought they didn’t understand that his office door was locked and he could not get to the door, so I called them and was amazed that they quickly knew the situation and did understand. EMS arrived before I did. The sight of him on that stretcher was frightening, but I was comforted a bit by the serious calmness of the EMT’s. They told me we had no choice for hospitals and said he must go to the “best in Houston for stroke.”
The ER physicians explained with an image of his brain that indeed, he suffered a hemorrhagic stroke. “Well,” I asked, “how can you fix that? Surgery?” I realize now that this man was very patient with someone who had no clue. I was already thinking, “It’s Friday. Perhaps he’ll be okay by Monday or Tuesday…”
This was just the beginning of years of learning.
The children arrived and showered me with love, support and help. Somehow I managed to keep my job, working from a laptop in the hospital while learning the procedures, keeping a log of so many doctors and specialists, medications and their side effects that were frightening to say the least. They were not all patient with me, and Bob was a mess, still demanding and not cooperative with the therapy. He expected me to be with him 24/7. I was exhausted, surviving only with the support of my family. One daughter kept every aspect of the house going; one daughter managed to close his office, save the most important files, sell and donate all the equipment and furniture and negotiate his recently signed lease renewal. One of her friends came from Dallas to help me sell the sailboat and motor home. Adventures of all, some humorous, will be detailed in A Stroke of Blessings – a work in progress and follow up to A Stroke of Health.
The final instructions from the hospital social worker did not fit in my brain: You will have to quit your job, sell your house and put Bob in a nursing home – NO! And oh yes, join a Support Group.
Bob’s daughter Linda insisted on moving from Atlanta to help with his care during the day so I could continue work – and insurance. We had worked out an exhausting routine, but it was working. Then Linda died.
The children still came during vacations and holidays; San Antonio daughter and her darling little ones came for extended help when they could. They all have their own families. Surely, there would be some help. I searched for caregivers, but the service was expensive the right person didn’t seem available. Nursing homes were not an option for us. I retired to become Bob’s full time caregiver. Everyone else disappeared.
The first two years I prayed for God’s Will, thinking that would coincide with my vision. It did not. Then I just prayed for my health, strength and wisdom and those prayers were answered with “yes.” Bob was able for awhile to get out for church, movies and medical appointments. I took him on grocery shopping outings, but that was difficult for us both. Finally, a friend from church offered to sit with Bob for four hours each Tuesday. That was a huge blessing for Bob and me. But that was it.
Friends rarely called; sometimes we received cards of “encouragement” and the promise of prayers which were cherished. To encourage some personal interaction, I planned dinner parties thinking if people just knew us better…That was difficult on many levels, just more work for me and Bob’s attention span grew even shorter. He often spoke inappropriately. And sometimes he drooled.
It took another year for me to realize that, this was it. I was totally devoted to Bob’s comfort, care and whims. Research on his medical problems and medications was ongoing. We were fortunate to have a good medical team, but the prognosis was never positive. The combination of problems worked against each other. Bob’s world never grew from the bedroom which now resembled a comfortable hospital room. He needed help for everything except feeding himself with his non-dominant hand, the left side of his body nearly completely paralyzed. No exercise was detrimental to Diabetes, High Blood Pressure and COPD and other problems developed.
Occasionally someone would ask, “What can we do for you?” I told them. Silence. I even used my networking skills to spread the word. Nothing. The only support groups were online after midnight and I didn’t find much encouragement there. The first thing I read was, “I’ve been doing this for fourteen years.” But I did learn that I am not alone and the absence of help was not personal. It happens to all of us.
I knew that one day Bob would depart his earthly body and I did not want to live with guilt and regrets. I gave him my total devoted attention. My survival came from accepting the situation and putting my needs on hold, praying without ceasing. Faith grew. Daily conversations with my special sister many miles away and calls and texts with children who showered me with love and encouragement, were God’s answers to my prayers. I made a list of things to do when my life changed:
Take a bath. See the dentist/doctor. Take a walk. Wear regular clothes, shoes. Go to church. Visit with people. File six years of taxes. Write another book. Find a way to help caregivers who have no help.
I wish I could provide a magic answer for all of us, I don’t know it. But I do know that I did my best to the end and Bob thanked me. We forgave each other for the things that needed that. I have begun my “list,” I continue in prayer. I have no regrets.
NOTE: Bob and I decided that there would be no funeral or memorial service for him since the ones who cared for us had already shown up. I don’t think I would have been very gracious to hear people tell me how sorry they are – for my loss.
If you’ve read this far, you might enjoy this Celebration of better days.
You are all in my prayers,
You can read more of Judi’s writing in her debut book, A Stroke of Health