Disclaimer: The comments in this blog are my personal opinion and may or may not reflect an adopted position of the city of Glendale and its city council.
This blog is dedicated to all caregivers…whether the person you care for has a major injury/disease, Alzheimer’s or in my case, vascular dementia.
This is Charlie’s story. Charlie was born in Oklahoma in the 1930’s and grew up in Texas. He is one of 7 siblings, all of which have passed away. At 90 years Charlie is the last man standing. He grew up dirt poor and as soon as he graduated from high school he joined the Air Force. He served as an aircraft mechanic at Luke Air Force Base.
Charlie and I have been married for more than 50 years. The Charlie I married and knew for 40 years, was a happy soul. He is “Mister Social.” To this day he loves talking to people, anyone. If he has no one to talk to, he will talk to the wall.
Charlie is a redneck from Texas. In his youth he could be a hard drinking, hard fighting guy. He played the guitar and sang. He was a joke master and could recall any joke for any occasion. He loved the outdoors and nearly every weekend our family would be hunting, fishing or just dirt bike riding on the desert with target practice thrown in for good measure. He absolutely loved golf and was very good at it. When he wasn’t outdoors with the family, you would find him on the golf course, practicing or playing with his golfing buddies. He loved family and talked to his 3 brothers and 3 sisters almost daily.
His dream was to be a farmer but that never came to pass. Instead, he became a union electrician. He was part of a crew that installed cell towers in New York City after 9-11. He did hard, physical labor all of his life.
For 40 years life was normal. We raised 3 kids – one in law enforcement, one a registered nurse and one a firefighter. We became grandparents of 7 grandchildren and 6 great grandchildren. Charlie retired and spent his time doing “honey-do” projects and playing golf every chance he got. Life was good.
Then, about 10 years ago, life changed for our family. One night, during dinner. Charlie suddenly dropped his fork while eating and couldn’t raise his arm. He was mildly confused. Subtle signs of a stroke. We called 9-1-1 and after a barrage of hospital tests he was diagnosed as having had a mild stroke that seriously damaged the left front lobe of his brain. This part of the brain is responsible for functions such as language production, reasoning, and voluntary movement. It plays a crucial role in decision-making and social behavior, and damage to this area can lead to difficulties in speech and changes in personality. He was also diagnosed with an enlarged prostate, non-cancerous.
While in the hospital, Charlie was a difficult patient. He did not want to stay in a hospital and spent many waking hours trying to get out of bed so that he could leave, becoming a major fall risk. He was sneaky and inventive, making it difficult for hospital staff to contain him. They finally placed him in a room adjacent to the nurses’ station. After several weeks of hospitalization and physical therapy Charlie came home.
Life was almost as it had been. Charlie needed to use a walker, 24/7. He could still take care of his basic needs with little or no assistance. He could dress himself, shower, use the toilet, feed himself, take his meds but gone was his passion, golf. He adjusted to using incontinent underwear. Instead of golfing, he talked to his siblings on the phone daily. He read the newspaper religiously every morning. I found books of word finds and I think over the next few years, Charlie worked his way through every book available. He was able to watch TV on his favorite recliner. We all adjusted.
Nothing lasts forever and 5 years ago, we faced another crisis. Charlie was sleeping nearly 24/7. I knew something was wrong. This was so out of character for him. Another 9-1-1 call and trip to the hospital. This time he had pneumonia and sepsis. Very serious. Charlie is a tough old bird, physically. He was in the hospital for 10 days and recovered. His vascular dementia was causing him to aspirate his food and that is what had caused the pneumonia. There is no cure for this, and we face the fact that it could occur again, at any time. Vascular Dementia is number 2 in brain diseases, right after Alzheimer’s, number 1.
His cognitive and physical skills were diminishing. He could still function but now he required more assistance such as changing his underwear. We adjusted to a new level of normal. He became more confused, especially at night. This is known as “Sundowners Syndrome.” He often demanded that I drive him to a job or take him home (to a house we had lived in some 20 years ago). When I refused, he became angry and tried to leave. In his anger he would use language that would make a sailor blush.
We installed cameras in every room and put child-proof locks on every door. He would often wake in the middle of the night and try to leave. It often took me an hour or two to calm him down and get him back to bed. Daily he would insist that he call one of his siblings. By now, all were gone. Every time I told him that they were gone he became shocked and saddened over and over again. He was now officially in the moderate stage of dementia.
I still worked and when I was not home there was always someone here to keep an eye on him. He remained fairly alert and docile during the day but nights were constant battles to make sure he couldn’t leave the house. His wanting to leave to go to work or to his other home was severe and occurred nearly every night. We adjusted once again to another stage of new normal.
In December of last year, I retired. I loved my job and was good at it, but God was giving me subtle signs that I needed to give Charlie more care. It was a wise decision because in August Charlie faced another crisis. Once again, he was sleeping way too much. That had now become a warning sign as Charlie could not verbalize any signs that he was not feeling well.
Once again, Charlie had pneumonia and a urinary tract infection. Either one is potentially lethal but in combination it is nearly impossible for a 90-year-old to overcome. That first weekend in the hospital was 50/50. I said earlier physically Charlie was a tough old bird. He survived that weekend and recovered. After the hospital he was sent to a rehab facility. I would never send him to one again. All of them are understaffed with each nurse on shift responsible for 13 to 20 patients. An impossible situation. When one of their patients is not manageable, as was the case with Charlie (he still was hell-bent on breaking out), their only recourse is drugs. Charlie turned into a zombie and was asleep on nearly every one of my daily visits. I became so concerned I discharged him against medical advice.
Charlie was home again but much weaker. His dementia is now classified as severe or late stage. Caring for him before this latest episode was a piece of cake. Not anymore. Charlie now has severe dementia. With that diagnosis comes a new set of challenges. He has become a 4-year-old in a 90-year-old body. He now requires care 24/7. He has severe memory loss and often does not know he is at home. He has experienced a significant loss of communication and often rambles or cannot recall words. He often does not know if it is day or night. His peripheral vision is gone.
His attention span is measured in minutes. He can’t follow anything on TV for longer than a few minutes and then he loses interest. Perhaps one of the most difficult challenges for me is that Charlie does not acknowledge how ill he is and still believes he can walk or do things that he can no longer accomplish. That causes him to be a major fall risk when he tries to get out of his recliner or wheelchair unaided. He has to be watched constantly.
The walker is no longer feasible. Instead, we use a wheelchair and a lift to move him from bed to the wheelchair and back again. He is now totally incontinent. While he still has a good appetite and loves food, the portions are greatly reduced. I now give him all of his medications and make sure that he actually swallows each. He still has sundowners, but it is not as severe and occurs every couple of nights. We use a hospital bed, and he is unable to get out of it. That allows me to get some good rest at night.
I have connected with White Rose Hospice and they provide palliative care. They are wonderful. They supply incontinent products and some of his meds. A CRA comes twice a week to bathe him. A nurse comes once a week to check his vitals and to find out if there is any sign of impending health issues. A social worker stops by every several weeks to check on me, more than Charlie. They supplied the hospital bed and all sorts of other equipment to make our lives as easy as possible.
The big secret I discovered is that working for us is establishing a routine. He gets up, gets cleaned up and has breakfast at the same time every day. He still reads the newspaper (the same one for a month now because he has no concept of dates). He spends some time on his recliner, often napping. Lunch is at the same time and then he knows we will go outside to the back patio for some fresh air time. What always amazes me is that everything in the backyard is new to him every day. Bedtime is always at 8:30pm. If I have managed to keep him awake for most of the day he will sleep through the night.
To all of you caregivers I know firsthand how difficult the task is. It is not for the faint hearted. Your patience and strength are incredible. Please be sure to carve out time for yourself to recharge. God bless you.
Thanksgiving has passed and Christmas is coming. Our family has a lot for which to be thankful. Charlie is still with us. He may not be the same Charlie but there’s still a Charlie buried in his 90-year-old body. We know his time to join his brothers and sisters is coming. He is home. He is well cared for, and he is surrounded by his loving family.
© Joyce Clark, 2025
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