Tag Archives: Alzheimer’s

Ending 2

She lies in bed
her life leaking out –
so fragile now.
Medicated for calmness,
slips in measured increments,
easier to move, manipulate,
a rag doll . . .
her life ticking away
moment by moment
as I sit and watch and wait
for the end of
a remarkable woman
who did  so much,
rose to such high levels,
and now a hollow vessel –
life measured
by the sound of her breath.

Palliative Care

Hospice – Palliative Care
slowwww ddownnn
No routine
Eat however much
whenever mood strikes
even though mood is a misnomer

No more struggling
to make walk.
Showers out
sponge baths in bed in
Hospital beds
Wheelchairs
Pureed foods
Lifts if necessary

Trips are gone,
body too fragile
mind largely gone
pay attention to face –
grimaces? Stop, ease off
smiles, try more activity

For caregiver, its harder
if you have been with patient
a long time
two people needed
when one sufficed before
for moving patient from one place
to another or
simply to change clothes in bed
Taking are of person
is challenging – at best.
new, different skills are needed.

Putting away items
not needed anymore
in a few months time,
she will pass into great beyond.
Little time left –
starting goodbyes
in minute gestures,
tears filling heart,
sadness lining body cavities

A magnificent woman,
broke glass ceiling
in world of Finance
now beginning new work
breaking glass ceiling
to Heaven . . .

Caregiving challenges

His face a maze of rivulets and ravines, crutches help bear the weight he carries,
his feet heavy, movements ponderous. Yes, age has wormed its way into his bones
but more, he carries the years upon years of caring for a willful, capricious wife –
most times removed, caught up in her own world, with people and presences
no one else can share or know, leaving him alone with the battle of care.

Caregivers have a heavy burden even with the easiest people those with minds still clear, bodies more or less functional. Whose age or disease make the need for care, daily or occasionally, a burden, willing or not.

But for others, caregiving  carries a much different burden. When they must manage a violent or mentally challenged person, a person with bipolar or schizophrenic
episodes, one whose body has worn out, needing total care, it can make the caregiver
sicker than the person cared for.

That old man has cared for his wife since she had nervous breakdowns forty years prior, sitting by her bed every minute, ignoring all else, including his only son, alone, left to fend for himself, do the shopping, laundry, cleaning.

He has abided her demands, given into whims, defended her right to choose not to medicate. In so doing, she has chosen a tangled trail leaving her family to carry a hard burden of care allowing the right of self-choice to medicate and feel largely better or be “in control” of herself as she berates, hits, babbles, ignores him or
or talks gibberish. BUT always remains the center of attention.

The burden of caregivers is their lives aren’t their own, at the least for sizable chunks of time.  From bill paying and shopping, to bathing, feeding and all facets of self care,
they spend from Sunday visits to constant care for family or hired professionals.

When it comes to Alzheimer’s, all bets are off. You are not often recognized for yourself. Hitting, endless paranoid pacing, constant distraction, inability to  voice thoughts coherently . . .it is exhausting. But it is also a means to give back, to make amends, to relish the moments you have because they may not be long.

That old man now must also contend with a son who believes his mother has every right to choose not to medicate, even though all who are part of her life are negatively affected by that choice. The son refuses to listen to his own children who have enough detachment to see the situation more clearly.

When the Father is overwhelmed, the son brings her, 600 miles away, to his home
where she sits alone, hour after hour, or wanders off with the dog, lost, unaware of where she is or why others are yelling at her to get off the street. It’s not care, not a solution, it’s an ill-chosen stop-gap measure that could hurt or kill her.

We need to be aware of the long-term effects of the decisions we make for our loved ones or those under our care. Sometimes the right solution is personal care by the family, sometimes it’s professional care within the home, but assisted living or skilled nursing homes may be the best options too.  Money is, of course, a vital component in decision-making, as is insurance coverage, and what the impact will mentally have for the person being cared for.

Life in Memory Care

LIFE IN MEMORY CARE

Within the Memory Care unit, life goes on. Maybe not as we know it or even as they knew it, but it is there. As we work with the residents, we know where they came from, the accomplishments they achieved, the people who made up their lives and they are filtered on, layer by layer, to the people they now are. It is regression and progression simultaneously.

They go through cycles – sometimes violent- sometimes sweet, caring, and kind. A lady I work with was a trailblazer for women on Wall Street and opened trade between Brazil and the U.S. She traveled to many parts of the world. The people from her life are devoted to her. They call a couple of times a week as they live 3 hours away. They take care of her needs even though they have medical challenges of their own and are taking care of their own parents. They worked for her and her husband for 30-40 years.

She is mostly a sweetheart. She may not know my name, but she recognizes me even though I might be her husband, am considered often a male, although I look nothing like one. She is trapped in her past childhood and marriage. A child of privilege and wealth, when she eats on her own, she takes “Debutant bites”, itsy-bitsy bites, the way she was taught when training for her “coming out”.

Last night we sat on her sofa, she leaned over and put her head on my shoulder as I rubbed her side, saying “I Love You”. Five minutes later I am toileting and underdressing her for bed. She snarls, “who are you. get away from me.” Then she stands up and has diarrhea all over her clean clothes and the floor. I get her cleaned up, bring her to her room, and she does it again. All in a day’s work. She can’t help it . . . doesn’t really know what is happening. It breaks my heart sometimes.

A wonderfully talented poet lives down the hall, an inventor the other way. Upstairs is a world-traveler writer, a professor of English and publisher of 30 books, a thoroughly obnoxious Broadway man . . . the list goes on. Many of those upstairs should be downstairs, their short term memories are so poor. There just isn’t enough room. Then there are the touching situations. One man feeds his wife, reads to her, cherishes her. A woman was a teacher in a one room schoolhouse.

There are so many wonderful people in Memory. Some have passed on and most times it breaks my heart. I hate this disease – either dementia or Alzheimer’s. It ruins the lives of so many gifted, helpful, generous people. But once in a while, it does an interesting trick . . . someone who was not very nice during their adult lives mellow, their edges fade. When you care for someone 24 hours a day, its a great thing.

The Right To Choose Suicide

THE RIGHT TO CHOOSE SUICIDE

Suicide evokes such a rash of feelings and jumble of thoughts in me. Nothing is easy in this arena. I have always been a firm believer in a person’s right to choose the time of their death, and in the past couple of years, I have been examining those values as my personal health issues have made me increasingly aware of my mortality.

When I was in college, my parents owned a residential home for the elderly. One of the women in the home, Marjorie, was a quiet woman, someone who held her own counsel. She shared the bedroom with another woman and we rarely heard her speak. It wasn’t that she was shy necessarily; just that she had an economy of language. She had been in the home for several years when she found out she had inherited a disease from her mother. The disease caused a slow and very painful death. Marjorie refused to accept those terms. She waited until she had a full prescription of her sleeping medication. During the two days before, she quietly went to each person in the home and let them know how much they meant to her. Then, she swallowed the entire bottle. When we woke the next morning she was gone, but she looked peaceful and had the trace of a smile on her face. We all respected her decision.

I fear I may develop dementia as my father had. I have no qualms about choosing to end my life before it gets too bad or I become a burden to my family. My children have a right to their own lives and having worked in Memory Care units and private duty care of people in the early, mid, and late stages of dementia, I know I don’t want a life like that. It’s a very hard, often long, way to go. I want my family to know me in better ways even though, as my daughter said, God will not except me in Heaven. To which I replied – then I will fertilize flowers right down here.