Being inspired by an Alzheimer’s patient
Elaine and I have already said, that we have had over 70 yrs of combined hospice care experience.
And for the past many months I (Scarlett) have been working exclusively with a Alzheimer’s patient. Whom for the sake of this article and to protect her privacy rights we will call “Ms Ann”. This dear 93 year old lady enforces my life’s daily inspiration by just going through this dreaded disease.
The never ending changes
In the beginning of Ms Ann’s care with me, she was up walking with minimal assistance with the walker. By minimal, I mean with me just walking beside her. To the kitchen, to the bathroom anywhere and everywhere as they say.
And could dress herself with me doing buttons, and tying shoe, she could brush her hair, do her make up, brush her teeth, with very little assistance. Well that’s all changed since February.
The simple things in life are the hardest
We all wake up to go to the bathroom, and do are daily rituals. We take for granted, bathing, brushing our teeth, putting on make up and doing our daily rituals for ourselves.Use you imagination. Please take time to think about who does all these things when you can’t ? And this where I as the full time hospice caregiver comes in.
Sharing a day in the life of an Alzheimer’s patient
Let me share what an average day is like for Ms. Ann. Just imagine your day starting at 12 noon or even 2 o’clock in the afternoon. Because, at this stage of Alzheimer’s Ms Ann body says it needs more sleep.
Ms. Ann has to wait till I bathe her in the bed, because she has declined to the point in 4 months till she can no longer get in the bathtub or shower.
She has become totally dependent for all her personal needs on her caregivers.
Total care means what?
Total means, to be blunt you longer have control of bowel and bladder. And imagine in the beginning of this stage the embarrassment you feel at having someone perform these task for you. Walking with you first in the beginning, to not being able to know “ how or when you need to go to bathroom”.
And then you go to get in the wheelchair after being bathed, changed, dressed, to physically helped to set up on the side of the bed. Helped brush hair, teeth, all other grooming aspects. Even down to tying you shoes. And you can’t remember how to get up and transfer, you don’t remember what to do with you feet or how to turnaround and sit down on your own. But you still can feel embarrassment that you can’t.
Trapped in a mind that no longer can communicates to it’s limbs
Ms Ann is for all practical purposes of daily life functions is trapped and while she doesn’t know what or how to do she still feels embarrassed that she can’t do it. Part of Ms. Ann’s mind tells her this is awful, not normal but their’s nothing she can do to fix it.
So rightly so, she is frustrated and many times voices she would rather be dead and asks why doesn’t the Lord just take on home.
Responding to the negative
Almost always my response is none of us get to choose how we leave this world. But you are a blessing to me. Your smile lights up the room. And I count it a privilege to care for you everyday. What a life’s inspiration she is to me. The tough keep going! Now we are up and ready for the day
More challenges as we transfer again to the lift recliner. After settling in her chair, begins the exercise of trying to get her to eat something, anything. Because, Ms. Ann who has lost over 55 lbs at last weigh in has “zero” appetite. I get her the usual glass of buttermilk which thankfully she will do.
After much offering and suggestions, gravy and biscuit, oatmeal, cream of wheat, she says oatmeal. And you thinking awesome. Not quite, she eats 3 teaspoons full and says she’s just not hungry. That she got up real early about 5 and ate and is still full.
Episodes of unreality
Hallucinations are common, as is thinking you’ve already done something. In this instance eating breakfast. When, in realty she just got up. Ms Ann might have dreamed it and now it is fact. But, the fact is, she hasn’t eaten since yesterday and then only maybe 1/2 to 3/4 of a cup of something if at all.
So I wait a little while, and in the mean time turn on the animal planet station. Why that station you ask? The answer goes back to the hallucinations where Ms. Ann might watch say a “cop show” in her mind those scenes that are shooting people become a realty in her mind regardless of whether she is asleep or awake.
Our minds can transpose fiction to fact
I personally have had dreams that seemed so real, an even a nightmare where I wake up crying or fall out of bed trying to get away from the bad dream. But, thankfully I wake up and realize it’s only a dream.
Ms.Ann seeing someone get shot on TV it becomes real she sees it happening to a loved one or sees someone breaking in to kill her. Fear is huge in her mind. Fear of windows that can be entered, doors that are opened as a way for someone to hurt her. Even of storms outside, these things represent danger in her mind trapped in the Alzheimer’s world her mind lives in Which, results in constant stare of fear.
Moving forward with our day
I fix Ms Ann a bowl of watermelon maybe a cup and give her a 16 oz. bottle of peach tea as she refuses water at every turn.
She eats the watermelon which is huge. So she now has had 16 oz. of buttermilk and of tea plus morning meds and watermelon. It’s now 3 pm. She watches television volume is Set at 24. I can comfortably hear it at 12 or 13 just for you reference.
While she is watching she will continually ask me, what does that consist of? What are they doing? Again her mind cannot process all of what’s going on.
Time moves on
The day progresses it now 6:30p I fix Mrs Ann a plate of roast and potatoes and carrots with onions. And she again eats 3 or 4 bites literally. She says “ Lord how Mercy” I’ve eat all day! I am just not hungry. So I fix her grapes and sliced peaches, yes she needs protein but, at this stage it’s whatever she will eat. Even chocolates. She does drink more buttermilk again, whatever she will do.
Time has progressed to 8 pm
Ms. Ann is now ready to go to bed she is exhausted, please imagine being her trying to process all that’s gone on during her day because in her mind she got up at 5a fixed breakfast an ate. In her mind people have today tried to kill her, tried to break in, and at one point water was spewing all over her. While it’s all imaginary. It happened in her mind. In her reality.
Why do I need to know this stuff?
I hope to get others to see what a brave soul this dear lady and all Alzheimer’s patients are. Ms. Ann has become one of My life’s daily inspiration. No, she didn’t get a choice list. But, when life handed her lemons she made lemonade.
Silver lining isn’t always visible
I try to always put myself in their shoes, and be compassionate, caring, and understanding. Because,this could be me. And for that matter it could be you, or you mom, or dad. Please remember the next time you see someone in a wheelchair an their obviously confused. That person has lived, loved, laughed And now their mind can’t remember and their confused. Give them a smile, and if they tell you they know “you” just agree and make them feel better. Life is short and this to shall pass. Thank you for reading with us today and let us know how you feel about or relate to this article.
Thanks for reading our story,
Elaine and Scarlett