Caring for Paa

The bitter-sweet memories of a daughter, who has to parent two demented children;her mother and father

daughter with elderly fatherFor 11 years I pleaded with my elderly father to allow a caregiver to help him with my ailing mother, but after 55 years of loving each other he adamantly insisted on taking care of her himself. Every caregiver I hired to help him sighed in exasperation, "I just can't work with your father, his temper is impossible to handle."

My father had always been 90 per cent great, but his temper was a doozy. He'd never turned it on me before, but then again I'd never gone against his wishes either. When my mother nearly died from an infection caused by his inability to continue to care for her, I flew from southern California to San Francisco to try to save her life—having no idea that in the process it would nearly cost me my own.

Playing Jekyll and Hyde

I spent three months nursing my mother back to health; while my father said he loved me one minute, he'd get furious over some trivial little thing, call me nasty names and throw me out of the house the next. I was shocked to see him get so upset, even running the washing machine could cause a tizzy, and there was no way to reason with him. It was so heart-wrenching to have my once-adoring father turn so much against me.

Choked!

I immediately took my father to his doctor and was flabbergasted that he could act so darling and sane when he needed to. I could not believe it when the doctor looked at me as if I was the crazy one. Then things got serious. My father had never laid a hand on me my whole life, but one day nearly choked me to death for adding HBO to his television, even though he had eagerly consented to it just a few days before. Terrified, I called the police and asked them to take my father to the hospital for evaluation. I was so stunned when they released him right away, saying they couldn't find anything wrong with him.

A year-long ordeal

I was trapped. I couldn't fly home and leave my mother alone with my father—she'd surely die from his inability to care for her. I couldn't get healthcare professionals to believe me—my father was always so normal in front of them. I couldn't get medication to calm him; he refused to take it or flushed it down the toilet. I couldn't get my father to accept a caregiver. I couldn't place my mother in a nursing home; he'd just take her out. They both refused Assisted Living and legally I couldn't force them. I became a prisoner in my parents' home for nearly a year trying to solve crisis after crisis, crying rivers daily, and infuriated with an unsympathetic medical system that wasn't helping me appropriately.

What the heck!

You don't need a doctorate degree to know something is wrong, but you do need the right doctor who can diagnose and treat dementia properly. Finally, I stumbled upon a neurologist specialised in dementia who performed a battery of blood, neurological, memory tests and scans. He also reviewed my parents' medications and ruled out reversible dementias such as a B12 and thyroid deficiency. And then, you should have seen my face drop when he diagnosed Stage One Alzheimer's in both of my parents—something all other doctors had missed entirely.

Polar opposites

So, what I'd been coping with all these days was the beginning of Alzheimer's, which begins intermittently and appears to come and go. I didn't understand that my father was addicted and trapped in his own bad behaviour of a lifetime and his habit of yelling to get his way was coming out over things that were illogical... at times. I also didn't understand that demented does not mean dumb and that he was still socially adjusted never to show his 'Hyde' side to anyone outside the family. Even with the onset of dementia, it was just amazing how he could still be so manipulative and crafty. On the other hand, my mother was as sweet and lovely as she'd always been.

Balancing brain chemistry

I learned that Alzheimer's makes up 65 per cent of all dementias and there's no stopping the progression nor is there a cure. However, if identified early there are four FDA approved medications that in most people can slow the symptoms of the disease, keeping a person in the early independent stage longer, delaying full-time supervision and care. More medications are still in clinical trials.

After the neurologist treated the dementia and the depression [often present with dementia] in both parents, he prescribed a small dose of anti-aggression medication for my father, which helped smooth his temper without making him sleep all day. It wasn't easy to get the dosages right, but at least we didn't need police intervention any longer. Once my parents' brain chemistries were better balanced, I was able to optimise nutrition, fluid intake and their medicines with much less resistance.

Finding creative solutions

Finally, I was also able to implement techniques to cope with my parents' bizarre behaviours. Instead of logic and reason, I used distraction, redirection and reminiscence. Instead of arguing, I agreed, validated frustrated feelings and lived in their realities of the moment. I learned to go with the flow and let the nasty comments roll off. If nothing else, the bribe of ice-cream worked the best to get my father in the shower, even as he swore at me that he'd taken one yesterday.

Then finally, I was able to get my father to accept a caregiver. And with the tremendous benefit of Adult Day Care five days a week for them and a support group for me, everything started to fall into place. It was so wonderful to hear my father say once again, "We love you so much, sweetheart."

Infuriation to passion

No one discussed with me the possibility of the beginning of dementia in my parents that first year. One out of eight elderly people by the age of 65, and nearly half by the age of 85 get Alzheimer's. Healthcare professionals need to know the warning signs of Alzheimer's [see box] and share them with patients to save everyone so much time, money and heartache.

What I had endured, compelled me to give up my career as a television executive to become an advocate for eldercare awareness and reform. Passion to save others from a similar experience [or from getting so frustrated that they commit elder abuse] somehow resulted in my first book, Elder Rage, or Take My Father. Please: How to Survive Caring for Aging Parents. I also launched the 'Coping with Caregiving' radio programme to help caregivers.

Now I am grateful for the experience that took me to my knees and nearly destroyed me, as it was also the catalyst that compelled me to a higher purpose, passion and reward than I could have ever imagined.

10 warning signs of Alzheimer's

Critical signs a caregiver must look for in a patient to determine if s/he is suffering from Alzheimer's:

  1. Memory loss
  2. Difficulty in performing familiar tasks
  3. Problems with language
  4. Disorientation of time and place
  5. Poor or decreased judgment
  6. Problems with abstract thinking
  7. Misplacing things
  8. Changes in mood or behaviour
  9. Changes in personality
  10. Loss of initiative

This was first published in the February 2010 issue of Complete Wellbeing.

Reprinted with permission of the Alzheimer's Association

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Jacqueline Marcell
acqueline Marcell is an international spealer and host of the "Coping with Caregiving" radio programme. She is the author of "Elder Rage" which includes an addendum by renowned dementia specialist Rodman Shankle, making it valuable for all healthcare professionals. As a breast cancer survivor, Jacqueline advocates that everyone [especially caregivers] closely monitor their own health.

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