Today has been a hard one to say the least. A whole suitcase packed full of calamities from mother, work, family issues, coupled with all the chores of the day, I am ready to cry UNCLE!
I have informed my brother and sister that when I cry UNCLE...I will mean it... One day I must admit, I actually texted my sister Sue, the letters UNC, signalling to her that I was half minded to give up, but got to thinking that she would think I was talking about my youngest daughter who had just left for college at UNC-Wilmington, and didn't send it.
If anyone out there who reads this blog is considering caring for a loved one with dementia in their home,I must tell you, that it is a monumental task. In all honesty, it is much more than one or even two people can handle 24/7. No matter the stamina, willpower, determination that one may have, nothing can prepare you for what lies ahead. I could be less than honest and tell you that it will be worth it all, but quiet frankly, I'm not sure.
My day begins at 6:00 a.m., when I crawl out of bed,shower,dress. There is never a day when I can roll back over and say, wake me in an hour. Not even on the weekend. I head on down the stairs grimacing as I sneak to the bottom step, hoping not to see my mother peering at me through the glass doors which separate my house into her apartment. Several mornings, I have awakened to knocks on those doors, scaring the life out of me and others.
I head into the kitchen and gather her medicine for the morning. Opening the doors, I smile when I see that she's still in her bedroom, giving me a moment to open the blinds, adjust the air conditioner and take a deep breath. I quietly knock on her door as I call "You awake?" "Just a little bit" she'll say. "Hoppy jump" I say. Knowing that mother can barely roll over and get out of bed, I encourage her to perform this awesome task each morning so that she can stay independent as long as possible. Not that helping her would be beneath me, I just want her to continue doing certain things as long as possible. She finally is able to put her feet on the floor and stands to waddle across the room to the bathroom. She cloth bathes herself with necessary instructions each morning, finishing up with my dressing her, step by step. I instruct her as to where to sit as I go for her morning meds, which lay on her small kitchen table. With water in hand, I place her most important pill on the tip of her tongue, "the happy pill" or Haloperidol. Making sure mother takes this pill has become more and more important to me and others as her dementia progresses. The remainder of her meds are placed on the sofa beside her and she will take them one by one. I hurry to the kitchen to make her coffee and collect a small do-nut, knowing very well that she will only take two sips and one or two bites of the do-nut, and out they'll go to the cat.
Preparing her lunch is simple, but thinking of something that she will actually eat is another thing. I quickly make her lunch for the day and place it in the refrigerator.
Giving her the daily instructions, I leave her as my daughter takes over until I return from work.
Mother's dog Annie remains on her farm, so I stop by feed and water her for the day. It is now only 7:45 am.
My part-time job has become my salvation as being there is the easiest part of my day. Heading back home, I am tired and long for a few free moments to call my own. As I drive up to my house, I take a deep breath and wonder what lies ahead as I enter mother's room. My daughter leaves and mother and I are at home alone until my husband arrives from work, around 5:30 p.m. I have found myself glued to mother's room, watching television, making small talk or just keeping her company, all the while my house and dirty laundry of my own lies stagnant, as they yearn for me to do my duty.
After hours of dementia episodes, questions that have no answers, words with no rhyme or reason, bed time arrives at 8:45 pm. The routine begins with my bossy instructions and end with a goodnight and "I love you, mother."
My husband and I head upstairs to grab a few words in privacy about events of the day, retiring to bed, only to awake the next morning to do it all over again.
My writing this blog today, feels a little uncomfortable. My intentions are not for you to feel sorry for me,but to share my daily ups and downs with mother. Which is the reason I decided to share with you in this blog from day one if you are a child, spouse, friend or caregiver of someone who suffers from dementia. I just want you to know that you are not alone as well as telling you that if your efforts are for any reason other than a committed love to your loved one, you are not going to survive. It is not a part-time or full-time job, but an ALL-time job.
A friend of mine repeats this saying to me from time to time. "Mother took care of all seven of her children, and all seven of her children can't take care of mother." I'm beginning to believe it.
Thursday, July 7, 2011
It has been a very hot and humid summer and the grass seems to be growing relentlessly. I have grabbed my weedeater as soon as my husband Bob got in from work so that mother would have some company while I do this dastardly deed. Even though it is a little late, I head on out.
As I climb the bank at the road, I notice Bob leaving. I suddenly remember that tonight is his Rescue Squad meeting. Not wanting to leave mother alone, I hurriedly finish up and notice that my watch says 7:15 pm. Being in such a hurry to rush out and begin my summer chore, I had forgotten to give mother her evening medications, putting her behind approximately two hours or more.
As I open the kitchen door, I see her sitting in the livingroom with a Windstream phonebook in hand. I call to her and let her know that I'll be bringing her p.m. medications to her as soon as I get them prepared. Walking over to her, I can see that she has no concern about her medications being late. She continues to thumb through the pages of the phonebook. "What are you looking for mother?" I ask. "Well, I was wanting to call your daddy and see why he hasn't been to see me since I moved here" she answered. "I'm trying to find our telephone number, do you remember it?" she asks. How heartbreaking it is to see your mother looking through a phonebook for a telephone number that has been long removed as well as the person for whose name she searches, "Bryson Gibson."
It's been some 20 years now since daddy left us for a much better place, "Heaven."
Many times, my siblings and I had felt our daddy a little slighted, since she had fell madly in love with her second husband Yates. Watching our Dad take the back seat in mother's affections even though we all loved Yates, felt a little strange.
I've been noticing lately that mother hasn't made reference to her second husband Yates or anything pertaining to their life together of nearly 19 years.
All that's on mother's mind tonight is "where is Bryson?" Going down the list of Gibsons in the phonebook, mother comes across my Uncle Lawrence, daddy's baby brother's name. She acts as if she's found an Easter egg as she exclaims, "Here's Lawrence's number, we can call him and see if he knows where Bryson is." I finally feel the need to remind her that daddy has passed, thinking that this will end her fantasy. "He didn't die did he?" she inquires. "Yes mother, he's been gone for about 20 years now. "Are you sure? I just can't believe he's dead. Let's look and see if Aunt Ruth's number is in here, is she still alive? "Yes mother, but I'm telling you that Daddy isn't with us anymore." Just as soon as it leaves my lips, she comes up with another idea of how we can find out where daddy is.
As the night wears on, it's soon mother's bedtime, and I must say, I'm ready for it. Worn out from explaining to her over and over again that daddy is no longer with us and just how it all came about, I am exhausted. I have promised her if she goes to bed now, that we will go visit his gravesite and have lunch out tomorrow. This seems to appease her and she gladly crawls into bed.
I have fondly given mother a nickname, "Snuffy" which is short for "Mr. Snufflelupagus" a character off Sesame Street, which reminds me of her as she climbs into bed each night at the pace of a snail.
It seems that mother isn't the only one as slow as a snail around the Edwards' household today. It will be a long time before I'm slow to give mother her evening meds again.