Wednesday, May 28, 2014

Sleeping Around is Often the Caregiver's Lot

Hospital bed and visitor's cot
Photo by Pam Stephan
In the last month, I have slept in several places. When my dad is doing well, I can sleep in my own bed. But when Dad's health or confusion brought on by dementia acts up, I sleep where I can help him or reassure him.

I've been Dad's caregiver for seven years now and as his memory loss progresses, he needs to see a familiar face whenever he is awake (no matter what time it is!)

If Dad wakes up at 3 a.m. and gets dressed, starts to walk to the back door to take his dog outside, I'm the one that can persuade him to go back to dreamland for a while. I will go to his room with him, help him settle in, and perhaps take his little dog on my lap. Toto doesn't mean to, but sometime she wakes him up. Then I try to get some sleep. I call it sleeping, but in reality, I almost never clock out from this job.

Beds are best to sleep in but, I've made do with what's at hand. Here's some places I have slept:
  • Dad's bedside recliner in his room
  • A couch within hearing distance
  • An air mattress
  • A hospital cot
  • A visitor's chair in the hospital
  • And most recently, a gerichair.

Nightmares and Dementia

Dad sometimes has very vivid dreams or even nightmares. He has often woke up, come out of his room, and asked, "Where's your mother?" (He still misses her.) The problem with that question is that Mom's been dead these last 8 years. But telling him that at 2 a.m. is unwise, because he won't believe it, or he will get really upset. Our best reply is, "She isn't here right now. Let's try to get more sleep, okay?" That's my cue to go stretch out in his bedside recliner and stick around until he is asleep.

These vivid dreams can be caused by medications like galantamine or by other drugs given to help delay or slow down dementia symptoms. Other things that mess up the sleep of a dementia patient can be sleep apnea, nocturnal bathroom visits, depression, sundowning, and changes in the brain itself. I don't know of treatments for each of those. Of course, when Dad doesn't sleep well (and I don't either!) he may nap during the day, which only disrupts a normal sleep pattern all the more.

Make a Plan for Sleep

Because a guy with dementia is already taking a collection of daily pills, I don't like the idea of giving Dad a sleeping pill.  Naturally-induced sleep is safest and best for me and for Dad. So we try to keep a standard schedule in the evenings, starting with supper. After the meal, we clean up, take the dogs for a short walk, then either try to read, go through old photos, play dominoes, or watch some news.

Bedtime is always 9 p.m. and it follows a ritual that we stick to carefully. After the dogs have their final trip in the back yard, we get everybody settled in. I make sure Dad has a flashlight and the TV remote control. We get the dog into her bed. Dad and I then get a big hug, and we recite a formula that we've used since I was a child:
Me:  "Good night!"
Dad:  "Good night!"
Me:  "Sleep tight!"
Dad:  "Sleep tight, and don't let the bedbugs bite!"
Me: "I won't, but I will see you in the morning."

Sunday, May 11, 2014

Mother's Day - I am not my Dad's new Mommy!

Dora, my father's mother
Formal portrait circa late 1940's
My grandmother was a wonderful person, and could love people unconditionally. She started out in life with very little, but worked hard all her life. Grannie was a mother to two sons - my father was the younger of the two. Both of my father's parents taught their boys to be respectful, work hard, play when it was time, and love truly. Grandmother Dora was hospitable, a great cook, a wonderful seamstress, a productive gardener and rancher, and was expert at spoiling us grandkids! She endured the Great Depression, World War 2, the transition from life on a farm to life in the big city. My grannie was a real mother and grandmother - she earned those titles daily.

A couple of years ago, I was seeing a counselor to help me cope with the stress of being a full-time caregiver for my Dad. He has dementia and I spend most of my time with him. I told the counselor about many of the things that I do for my Dad: cooking, driving, home haircuts, laundry, pedicures, keeping files, managing medications, providing activities, and going to doctor's visits. She listened intently and then said, "Pam, you have a baby. It's the same as caring for a baby."

Well, I am here to tell you - Dad is not a baby and I am not his new Mommy.

Baby Culture

Many people who want to have a family plan on having a baby. They hope for the best, and prepare for the arrival of their new child. Young parents can ask their peers and parents for advice, and in many situations, they can expect support from their family and community. Their friends probably throw a party and shower them with gifts to help set up the little one in good style. Young mothers will freely give advice and swap stories about everything from pregnancy to birth to first diaper change to cutting the first tooth. When baby comes home, the parents are congratulated, and they begin the task of caring for and nurturing their child. They look forward to the many things their child will learn, and will be able to do. Perhaps they dream of what college or university the kiddo will attend. They might speculate on their child's future marriage and possibly, grandchildren!

In short, they expect the child to grow, flourish, learn new things, eventually take care of itself, and start the cycle of life anew.

Dementia Culture

My generation wasn't sure what they were expected to do when their parents became elderly. Many folks my age remember grandparents who lived in nursing homes or some type of senior apartment, set apart from the mainstream of life. I know there was exceptions, but there was a host of long-term nursing homes in the 1960's and 70's that were home to many seniors. My mother told me that she never wanted to be put in a place like that and she got her wish.

When Dad developed dementia, Mom was his caregiver at their home until she got lymphoma and passed away. He was heartbroken. He spent a year trying to live alone, with lots of help from my sister. But eventually his memory problem progressed to the point that he needed to live with somebody. Seven years ago, he and his dog moved in with my husband and I.

Caring for Dad is not like taking care of a baby. I can't hope for him to learn new things. He won't ever become independent. We were not congratulated when Dad moved in, although some folks have said kind things about our situation. There was no "Daddy Shower" of presents and advice when we were preparing for his arrival. Our culture does not yet fully support home caregiving, even though the Alzheimer's Association reports that in 2013, 15.5 million caregivers provided 17.7 billion hours of unpaid care for family members with memory loss. That number will increase as our population ages.

Limited Similarities, But No Comparison

Like a new mother, I never leave Dad alone. I provide a lot of assistance, but I provide it with respect and compassion. He still feels that he has authority over me, and I frequently fall into old father-daughter patterns because of that. Many times a day, I feel that I am about 8 years old. That's what hanging out with an 88-year old will do for you!  I never feel like I am Dad's new Mommy. Even if the day comes when he can't dress himself or feed himself, he will never be my baby. He will always be my father - the agreeable, easy-going, provider who towered over my childhood days.

So please don't wish me a Happy Mother's Day because I am a caregiver. I don't have a baby here. Perhaps I can be as strong and productive as my grandmother. Perhaps I can learn how to love unconditionally. Those are good goals.

If you know a family caregiver, no matter what their situation, please be supportive. Refrain from making assumptions about their situation, withhold judgement. Respect their role. It's a hard job, but well worth it, and it's a job that more of us will be taking on soon. And perhaps someday, somebody will be your caregiver. Then you won't be their baby, either. You will still be who you are, even if your life and your role in it changes.