I have a strong faith, which helped me through the journey of taking care of my husband with five strokes and dementia.
Bobbi and Clint on Second Date at the River
I know there are other despondent, lonely people who are grieving the death of a spouse, so I sent many prayers your way. Many were caregivers to their loved ones because, like me, they wanted to be near him or her for as long as possible. Others were not able to be caregivers for various reasons, but they still loved their spouse.
My husband suffered five strokes and had dementia. Prior to his fatal illness, he was such a sweet, caring person who loved me dearly. The ones reading this: if you have never experienced someone with dementia while dealing with disabling strokes too, then you might not fully understand the stress factor—I know I didn’t know what dementia and strokes did to the person.
My husband’s strokes affected the part of his brain that finally destroyed his appetite. Until then, I fed him anything that he would eat. I constantly cooked his favorite dishes, and he ate well for months; and then about three months before his death in September, he stopped eating. He would slap it away or knock the plate out of my hand. The only nourishment he would consume was chocolate. I put a straw in the bottle and told him it was chocolate milk. He would eat mashed potatoes and ice cream sometimes, and other times he would slap it away.
I gave him his medication on schedule and found he would squirrel (hold) the pills in his cheeks, even though I would ask him if he swallowed the pills; then he would lift his tongue to show me—no pills. I began to find pills in the carpet and on the windowsills, so I began crushing them.
The things he hated most were baths, shaves, haircuts, manicures, pedicures, and wearing clothes. He got to the point of being abusive by hitting, kicking, and pulling my hair. Please keep this in mind if this is happening in your life: they have no idea what they are doing.
I had to wear long sleeves in the summer to shop at the grocery store because of the bruises on my arms. He would grab my hand and twist my fingers, then push them back, trying to break them. Because he fractured the first bone of that finger, I had to remove my wedding rings and have rings cut off another finger.
When he no longer could sit up by himself, I would pull him into a sitting position to shave and give him a haircut by straddling him with my legs and putting a belt around me and him so I could have more control in a safe manner. I was always afraid he would hurt my leg that was broken twice the same day in 2014—it has a plate and two screws in it—and I am very careful not to break it again.
My brother-in-law John took all the guns and knives out of his room because he started threatening me with them. It was just words, but it was all new to us, so my family tried to protect me. And I won't lie he made me cry several times. I would go out onto the porch to cry alone. Yes, I had pity parties, but mostly I was scared to death, and I felt so alone. I wanted my mother, and sometimes I felt her spirit near, which calmed me for a while.
Early in the mornings, he was almost his usual sweet self for a few hours. I would sit and read to him, and he would fall asleep after any breakfast he would eat or drink Boost. Then, when 3:00 to 4:00 p.m. came, he would become a different person. He would yell out loud, "Mama!"—that's what he called me.
He also thought I was his employee. I cannot tell you how many times he fired me at night, then in the morning he would tell me about terminating that mean nurse. I tried sleeping in another room in my bed with a baby monitor so I could hear him—most of the time he would stay awake calling me to come there—but I got very little sleep and lost weight because caring for him was demanding and consumed most of the day and night.
I finally decided to sleep in a recliner outside his room, so he knew I was near, and it seemed to work better. He kept yelling all night and summoned me to his room. The doctor increased his medications, which made him relax and sleep, so that worked for a while. Nothing seemed to work for very long. I seemed to inhale with momentary joy and exhale with disappointment as his medications were changed—promising much but delivering little.
Many people advised me to take time for myself, go shopping, have lunch with friends, and get away for two hours of alone time. (I think of that often now that I am alone, and I can tell you it is not that wonderful.) The only time I left him was when I went to town to buy food and his medicine.
My sister Paula or my brother-in-law John would stay with him. And most of the time, if he was not sleeping, he was yelling for me. When I returned home, he would chastise me for leaving him and staying gone so long. I never gave up trying to get him to eat—I tried fooling him by going into his room every few hours and telling him it was breakfast, lunch, or dinner—and a few times it worked.
Our Sweetie Angel my Pomeranian, died in March 1916 from a kidney disease. He was almost 13 years old; this nearly killed me. I feel Clint had another stroke at this time because he became worse. He had his last doctor visit in the office, and that was a stressful time.
My sister helped me get him in his wheelchair to take him to his appointments. He could not stand or walk in April, and his eyesight was getting worse. Paula worked, so she helped me take him when she could—otherwise I was on my own.
Clint and Sweetie Angel--Sweetie Loved His Dad, And His Dad Loved Him
I had his mattress lowered because, when he could stand, he would fall trying to get in bed because it was so high. I have pulled and pushed him onto the high mattress many times. (I cannot believe I am still alive after all I went through; however, I never thought of myself until it was over, and I wonder how I did it—I suppose love did it.)
He would roll off his bed or fall out of his wheelchair when I left him for a minute; before he was bed-bound, I had to pull him into his wheelchair and onto his bedside toilet. The last time he was on his bedside toilet, he leaned over and fell off, and I called the EMTs. The year before he passed away, the EMTs came to our home at least nine times. I love those guys—they are the best, and whatever they are paid, it is not enough.
After he was completely bedridden, I used a urinal for him to urinate. And I used a large pad to put under him for a bowel movement. I turned him on his side, which was best because I had better control, and it was comfortable for him. He hated being washed afterwards, but I had to do it while dodging his kicks.
My husband was six feet tall and weighed 185 to 210 most of his life. When he passed away, he was just skin and bones, and it hurt him to be touched, and it broke my heart to see it.
About two weeks before he died, his doctor put him on hospice because I told him it was time. And what a blessing this was in more ways than one! I should have done it sooner, and I attribute my not doing it sooner to being a little insane at the time. They assure me that I have done everything right and tell me not to worry because they are there for both of us.
These people are truly angels. He was given a hospital bed, which was a blessing even if only for a short time. He had almost completely demolished his bed by kicking the end, the headboard, and the side boards.
This is unbelievable. Medicare would not approve a hospital bed for him because he did not have bedsores. This was because I turned him from one side to the other every four hours.
The hospice nurse said she had never seen anyone without bed sores who had been bedridden as long as he had been. She said this after he was placed in hospice care. Medicare rules are stupid—he rolled off his bed four times when I was trying to get a bed for him.
His pain became too much, even with the powerful drugs Hospice provided for him. His nurse called the hospice doctor, and he was taken to Haven Hospice. He was put into a medicated coma—that is how I would describe it, and I stayed with him most of the two days and nights he lived, as well as my two sisters, Wanda and Paula. This was the time when I needed my family, and they were there for me. The ones who could not come called and kept in touch; these were the ones who loved him.
In closing, I hope my story might enlighten and give solace to someone who needs it, and that they know they are not alone. I am not saying it was easy, and although I miss him, I would not want him back to suffer. My Clinton and Sweetie Angel are together now; it has been over seven years, and this thought keeps me going forward with my life.
Walk Slowly and Wait for Me
The last words I spoke to him after I told him I loved him were "Darling, walk slowly and wait for me"—I will be right behind you. He was in a medicated coma because his pain was more than he could bear.
He is in a peaceful world now with no pain, and for this I am thankful. Walk slowly, baby; I am right behind you.
This content reflects the personal opinions of the author. It is accurate and true to the best of the author’s knowledge and should not be substituted for impartial fact or advice in legal, political, or personal matters.
© 2021 Barbara Purvis Hunter