Today I saw Carl for the last time on this earth. It is one of the toughest days of late. The past 18 months have been one adjustment after another. The journey to this day started way back in 2012 almost exactly to the date of his first episode that turned out to be a precursor to his stroke.
I was working at IMS Allergy and Immunology in Goodyear, AZ and he was doing his visits to clients for Hospice of the Valley out of the Sun City, AZ office. Of course he was in his favorite town of Wickenburg, AZ which happened to be about 50 miles away from me. He called me and was slurring his words then hung up on me. Panic mode! Called him back and found out he was DRIVING! At least he was still in the town of Wickenburg. I convinced him to park the car and I would call the ambulance. That took some doing because he really couldn't understand what to do and he had a hard time knowing where to go. Finally he pulled into one of the shopping malls just north of town and was able to tell me where he was. Next hurtle was getting the squad to the right area of the parking lot. He was facing one business but that business was at the other end of the strip mall about 6 store fronts from him and of course he was parked waaaaay out in the lot. It took them a few minutes and several calls for them to locate him. So then it was off to the ER. Of course everything had calmed down for Carl by the time the paramedics reached him and they found nothing to indicate what had happened. They kept him overnight and sent him home with a few new medications.
Then the fun began. He just wasn't himself and neither of us could figure out what needed to be done. He started having an upset stomach and couldn't keep anything down. He started hallucinating and complained of a headache. So on Labor Day September 3, 2012, I again had the ambulance come. This time he was seeing lizards (large ones) crawling across the floor and had another episode of slurred speech and was weak. The next battle was to convince the doctor that there was something organic wrong, that it wasn't just a 'mental disease' due to his hallucinations. He was dehydrated and he wasn't getting any IVs because they kept stopping it for tests. Finally, after a couple days I pitched a fit and told the doctor that he needed to find out what was wrong! As a lot of you know me you can imagine my fit! So finally they did an MRI and lo and behold they found something! He had a complete blockage in one of his arteries off the carotid. He showed none of the normal stroke or CVA symptoms. No weakness on either side of his body, no deviated tongue when he stuck it out, no headache, no eyelid drooping..... just dizziness, comprehension difficulty, double vision, and hallucinations. So when the neurosurgeon came in while I was there he showed me Carl's MRI. He shook his head and said, "I don't think even with a complete life style change things will get better." and in so many words didn't feel he would live more than 3 weeks. So I prepared to walk this path I am on now 9 years ago.
We move from El Mirage, AZ to Cottontown, TN to be with my daughter, Julie Williams and family. The path slowly gets harder to navigate. 3 years ago he has 2 noticeable TIA's which the medical profession could not corroborate and because he did not have any complaints other than being tired. He was still able to go and do things but if I went into a store he may stay in the car type things. Then in December of 2019 he starts having neck pain and is uncomfortable laying in bed. He has a disc in his neck that needs to be removed and vertebra that needs to be fused and an enlarged prostate. So in February he goes and has his neck taken care of. The pain is gone, but he still isn't comfortable sleeping in bed so he sleeps in the recliner but doesn't recline it. This in turn makes his sleep apnea worse because his head is tilted forward while he is trying to sleep. He tried the Bi-Pap machine for about 9 months and was never able to sleep with it. So we just had him using an oxygen concentrator which helped a little. During that time he had surgery on his neck and he is doing less and less as far as exercise and he ends up in the hospital. I think it was because he fell. So in March of 2020 we start the hospital, rehab, home and falling again routine. Of course all of the rehab is done in nursing homes here and they aren't working diligently on rehab.... The first rehab visit started the day before all facilities closed their doors to outside visitors because of the pandemic so basically he was on his own. Because of this, we try home health care with PT here at the house. That worked for a few weeks but again he fell and off to the hospital. They sent him home and the first visit from home health the nurse wants him to go back to the hospital because he isn't doing well. He can't even stand up with help with a walker at this point. So off to the hospital again then into another facility under the guise of rehab and again widow visits only. This facility sends him back and forth to the hospital several times for various reasons, a fall or bladder infection were the most common. Then in August, he tested positive for COVID. Off to the hospital for evaluation and then the choice was 2 nursing homes that had a dedicated COVID unit. As physically run down as he was he showed no signs or symptoms of COVID. One facility was close the other a drive so we go with the closer one. They were good to him while he was in that unit. Of course I couldn't go inside and talked with different family members if I met them while he was in that part of the facility. I was really unhappy with the last facility and it was a 45 minute drive one way to go see him so it wasn't difficult decision to have him stay where he was. So now we start with visits to the wound clinic because he was delivered to the COVID unit with a spot that broke open while he was there. So at least I could see and touch him during those visits. Then those visits stopped in October because the facility wanted to do telecom visits but they were a great big fail. At this point I am getting sick of being called, honey, darling and sweetie and not getting answers when I ask questions. I also realize that the members of this facility don't have the same knowledge, ability or communication skills in nursing that I do so I am in frustration mode as well as freezing my butt off outside in the weather with window visits and still talking on the phone with Carl. It was a good thing I was able to get him a phone so we could at least talk when it was to cold for me to visit. He is mostly ok with the facility as they love him as most people did that knew him and with his dementia he couldn't remember how long he had been in the facility so each day was day 1. While I continue to be frustrated with no communication and being called honey, darling, and sweetie when I ask questions and the answer is always, 'Carl is doing fine, sweetie'. I yelled at people enough that most of them started remembering that I wasn't their 'darling, sweetie, or honey'. There were a couple nurses that were good and actually answered my questions and I got along with them, but mostly the time he spent in that facility was frustrating for me. I never did meet or talk with the doctor or nurse practitioner all the time he was there. In May of 2021, they opened the doors so I could go inside to visit. At least I wasn't standing outside in the cold or rain. This only lasted until the end of July and the pandemic 'numbers' started rising again and the doors were closed. So I am again outside looking in and trying to talk on the phone with him when he had a hard time holding the phone.
Then this new path I am on started on August 28th, 2021, when I received a call that Carl had passed away. I made my last visit to the facility to say goodbye to Carl before he made his trip to the funeral parlor. I had practice for over a year to get used to cooking again, get up at 6 am to feed the cats, control the TV remote, come home to a quiet house, and take trips to town without a co-pilot and now it was permanent.
I am just glad that I have had the experiences in life with my career as well as some of the jobs I have had and my religious beliefs to help me get through this time. I am going to walk this new path for as long as the good Lord will allow me to. I told Carl the day before he passed that I would be alright and I intend to keep that promise to him until I meet him in the next life.
Happy Quilting, Sharon
Permanent "Quilting the Kaye Wood Way" Certified Instructor since 2013
'Grand Ruler' instructor for Marti Michell since 2019