Gary's is approaching his twelve year stroke anniversary this week - On June 1, 2004 he suffered a massive brainstem stroke in the hospital while awaiting tests to find out why he had passed out earlier at home and again upon arrival at the hospital. No Dr. ever came back in the room to look at him that afternoon or evening, after we reported to the nurses that he was having a stroke. It was early the next morning when we had a meeting with the doctors and head of patient services that they informed us there was nothing they could do for him. We decided to transfer him to Swedish Medical Center in Denver, where he was placed in a drug induced coma and on a ventilator for the next three weeks. During that three week period he suffered a lung collapse, developed pancreatitis and then got pneumonia from being on the ventilator so long. We made the decision to have the tracheostomy done when they had to remove the ventilator as they weren't sure he could breathe on his own. The brain swelling was still pretty significant, and it took strong meds to gradually bring him out of the coma. A feeding tube was inserted and then they wanted to release him to a nursing home. I was told by the top three doctors on his case that he would never work again, probably have the feeding tube permanently, and may never speak or walk again because of the type of stroke that he had suffered and the amount of brain cells lost. We refused to give in to their negative diagnosis and eventually moved him to a rehab hospital in Boulder where he spent the next three months, gaining very little function. By the end of September 2004 he came home to continue his therapy and recovery. Before leaving rehab, they finally removed the trach tube since he kept pulling it out anyhow. He also had removed the feeding tube several times and we had to have it re-inserted.

Over the years there have been many changes - by eliminating many of the medications, we were able to keep him awake more hours in the day so he could participate in therapies. We have had many good therapists and caregivers and some not so good ones. Neither his union insurance nor medicare have paid for home health care, so we were on our own if I needed to get out. Therapies were limited to the medicare cap per year unless we were willing to pay out of pocket, which we did for things like acupuncture and private help with pool therapy.

This stroke survivor who doctors claimed would not live past six months is still hanging in strong. Some speech returned at around 8 months post-stroke and he now can speak full sentences, and is very good at barking commands and making snide remarks. His feeding tube came out around 10 months post-stroke and although he continues to have swallowing difficulties, he has never once in the 12 years developed aspiration pneumonia, and I have only had to do the Heimlich maneuver 2 or 3 times when he was choking on food. He may never walk again, and we've learned to accept that, but he is able to help with transfers to and from the wheelchair, as long as we continue to talk him through it. The short-term memory is probably the most frustrating part of this whole journey. I can't count the billions of times, I've had to remind him to keep his chin down and breathe through his nose when he has food in his mouth to keep from choking.........or reminded him to cover his mouth when he coughs so he's not spitting food everywhere. I sound like a broken record.

I've had maybe 12 full days of vacation away from caregiving the twelve years since Gary's stroke, so I guess I average a day a year, which isn't nearly enough, but better than nothing. We've gone through most of our retirement funds paying for caregivers just for the necessary trips to the store, or doctor or running errands, and maybe a few hours here and there of some "me" time. It's not cheap to take a 2 - 4 day trip when I have to leave him with a caregiver. I worry often about how long I can continue caring for him at home like this, and other days I can't imagine placing him anywhere else and then worrying myself sick about it, so we take things one day at a time. This morning I took him out for breakfast at the casino and we played for an hour before he was totally exhausted.......at least we got all our money back before we left. lol I stopped at the grocery store on the way home and let him sit in the car in a shady spot with the windows rolled down, and he was sound asleep when I got back to the car with the groceries. I'm pretty sure it was less than 10 minutes since I shop where I can get in and out quick when he is with me. He's been napping since we got home, and I got all the groceries put away and laundry done, so maybe we can head over to the pool tonight and I can swim a few laps while he sits in the shade to watch the planes fly in and out of the airport.

Here's to 12 years behind us .....doctors don't know everything.....and too often ignore the human spirit!!

Sarah