Are you ready to become a caregiver?

By: Jerry Blackerby

Are you ready to become a caregiver? Many people immediately think, “Why would I become a caregiver? I’m still young. My parents are still young. Everyone is in good health.”

A few generations back, everyone basically became caregivers as their families grew. The younger generation took care of the older generation, when it became necessary. Everyone expected that. Today, most of the younger generation do not even think about caregiving. They never expect to need to become caregivers.

Recently on a CBS Early Show, Ken Budd, executive editor of AARP magazine said, “There’s already 65 million Americans who provide unpaid care.” He projected that the number is only going to get much higher as the population ages.

Caregiving may be needed for any age, not just for the elderly. You may have a child who is handicapped, requiring a caregiver.

My mother’s little sister and her husband became caregivers for their infant child until he died at age 15. He had no muscle control. They had to feed him, bathe him and do everything for him that was needed. He could never speak, but could express happiness or displeasure. His mind appeared to be fine, but he could not control any muscles in his body. They never expected to need to be his caregivers until after he was born.

A niece and her husband became caregivers of their oldest child with Cerebral Palsy. A grandson and his wife became caregivers of an autistic child. Many other young families will become caregivers of children with autism. Current statistics show that one in 110 children will have autism. If the child is a boy, the statistics show one in 70. Caregiving for a child with severe autism can be demanding. There are other illnesses that may require caregiving for young parents, such as Downs Syndrome.

An adult family member may require caregiving because of a horrible accident, stroke, heart attack, or a dibilitating illness such as cancer, MS or ALS, commonly called Lou Gehrig’s disease. A nephew died with ALS at age 43. The last two or three years of his life, his wife had to become an unexpected caregiver. A co-worker became a caregiver for his wife with ALS. Another co-worker and close friend was only in his 30s when he had to become the caregiver for his wife with MS. Caregiving can become needed at any age.

My Dad had a heart attack when he was only 25. To a certain extent, Mom became a caregiver following the heart attack but Dad required very little caregiving for most of his life. About the time Dad was 80, he was diagnosed with congestive heart failure, an enlarged heart and expected to only live another two or three months. The doctors said he would not survive surgery. Dad lived almost three more years, but required a lot of caregiving.

Two of my sisters and my brother lived near Mom and Dad, so moved Mom out of the bedroom and one of them spent nights in the bedroom with Dad to assist him. My other sister and I would go there on alternate weekends and take our turns with him. Mom took care of him during the days.

After Dad died, Mom’s Alzheimer’s disease began to take control of her life. My sisters, who lived there, had to become her caregivers. We helped some on weekends. I have written extensively about this in my story, Your Mother Has Alzheimer’s, which is on my website at www.jerryblackerby.com/your_mom_has_alzheimer.htm.

You probably think that caregiving will be easy because you love the person so much and they love you. Sorry! It will be different. It will be frustrating, unappreciated and basically thankless. Many people we are caregiving become impatient, irritable, angry and belligerent. But that love we have for them is what we must remember, regardless of their actions.

Most of us changed diapers and had to wipe our children’s bottoms, but never think that we might have to do that for an adult. Dad was in the hospital a few months before he died. We were there to visit. Dad had to use the bathroom and asked Mom and my wife to leave the room. He asked me to stay so we could continue talking.

The nurse brought a portable potty chair to set by his bed and helped him onto the potty. When Dad finished, he rang for the nurse. Apparently, all the nurses were busy right then, because none showed up. Dad became very impatient and asked me to wipe his bottom. I had never thought about having to wipe my Dad’s bottom, but I did what was necessary. Then I helped him back into bed. I know that at least a couple of my sisters also had to wipe his bottom while caregiving.

Caregiving became very personal when my wife of over 56 years began to need caregiving following a major heart attack. I watched her go downhill as she became an insulin-dependent diabetic with congestive heart failure and atrial-fibrillation. She now has a pacemaker. She broke both bones in her left leg just above the ankle requiring surgery. The downhill trek accelerated and her need for caregiving became full-time. She has become wheelchair bound and can only walk a few steps. She has now been diagnosed with pancreatic cancer.

My wife was very athletic and could do almost anything when she was younger. She taught herself to sew, knit and do many crafts. She became a wonderful seamstress, even to the point of making suits, pants and sport coats for me in years past. She and I also upholstered many pieces of furniture for ourselves and family members. When she wasn’t doing crafts or sewing, she was working crossword puzzles or other puzzles or reading. She was always busy with something. Today, she sits in her chair, napping most of the time.

As my wife’s health deteriorated she became a fall risk trying to walk from the bed to the bathroom. She loses her balance easily and fell several times when I was not there to help her. Fortunately, the only injuries were bruises. I set a portable potty chair next to the bed and try to always be right beside her to try to keep her from falling.

Many elderly will feel hot or cold, regardless of room temperature. I can be sitting in my chair in the den sweating, while my wife is covered with a blanket, an afghan and complaining about feeling cold. A few minutes later, she will pull off the afghan and blanket and ask me to turn on the overhead fan because she is too hot. This goes on all the time, including during the night where she has an electric blanket, which I have to turn on or off as she requests.

I organize her medications and make sure she takes them at the proper time. If you need to take care of a parent, sibling or spouse, do you know their medication regimen? They reach a point where they do not know when to take medications, so the caregiver must control that.

Sitting in her chair all the time, she loses track of time. Even though I keep a calendar on the wall next to her chair with appointments marked on it, she will not know what day it is or when the next doctor’s appointment is scheduled. I can tell her and a few minutes later, she does not remember. I mark off each day on the calendar with an X, but she still gets confused. Her doctor had a CT scan run on her brain and ruled out Alzheimer’s disease or any other neurological problems.

It is frustrating to continually answer the same questions every few minutes, but if I let that frustration show through, she becomes agitated and angry with me. I have to remember that this is the woman I love and her health situation is causing her anger, not her normal self.

Caregiving for the person you love is a labor of love, although sometimes it gets almost overwhelming. When that happens, think about the old saying, “I cried because I did not have any shoes until I saw a person without any feet.”

Remember that caregiving for some people is very intensive. My aunt and her husband were total caregivers for almost the entire 15 years of life of their oldest child. My wife is wheelchair bound. I have to help with her bath and many other things, but she can still do a few things for herself.

Last fall at my school reunion, I saw a friend caring for his invalid wife. I found out that she had suffered a brain tumor and could do nothing for herself. He not only had to bathe her, he had to dress her, comb her hair, apply makeup and spoon feed her. As I watched him feed her a snack at our reception and then wipe her mouth, I saw the love for each other in their eyes.

Sometimes I see that same look in my wife’s eyes as I help her. That is a precious memory. At times like that, I realize caregiving for my wife is not so hard.

I think she may realize some things that she does and it probably frustrates her, but she cannot do anything about it. That must be horrible for her. It hurts me to watch the deterioration of her health from the vibrant, athletic person I married to her current state. But, I will be there for her as long as necessary.

These are just a few of the things you may experience if you have to become a caregiver. Some things you may experience are harder and may be embarrassing. If you have never considered the possibility of becoming a caregiver, you need to think about it because many people will have to become caregivers for their elderly parents, siblings or spouses.