Monday, June 29, 2009

caregiving at home

I have been having an interesting discussion, in the light of the issues around staffing and home care.

One Facebook group has created a 'cause':
Don't Give Up Your Parents For Addoption! (sic)

I am very much afraid that this misplaced concern will have a negative effect on caregivers. Until you've walked in my shoes, you do not know what I have faced as a caregiver.

We need to make decisions that are best for the entire family, not just the ailing senior. There are insufficient professionals around, at all levels.

I was asked if there was home care for my father if I would have kept him at home.
My response:
Like your badge says, it is a matter of choice! My father was incontinent, had dementia, and could not longer walk. I had a full time job. It was the best choice for all of us! My husband required 2 years of physio and massage therapy after he put dad back to bed. Dad would plead with us to either get him out of the wheelchair, or to undo his seat belt.

I would not have kept him home. Not at all. There is no one to offer such care in our small town, population 600 in the shoulder seasons, 1,000 in summer!. We do not have enough staff for Red Cross or the other agencies. In Muskoka Lakes they are constantly advertising for staff.

Our house is poorly constructed for wheelchairs, small doors, and there would be no bathroom/shower on the main floor for him. He couldn't walk upstairs. He was angry and upset most of the time. No one talks about the emotional and social impact of dementia, just the memory issues. It is a terrible burden for family and many people expect that the best thing is to keep them at home. It is not true.

In another e-mail, I was asked to create some awareness around the myths of dementia. For one thing, not all dementia is caused by Alzheimer's Disease. That is a huge misconception. The other issue is that memory problems are simply a clue to brain dysfunction, and should be watched. Many ignore it and hope it will go away. It will not and it will get much worse. The issue is lack of oxygen, or lack of functioning in brain systems. The autonomic functions continue (breathing, digestion, etc.) but higher level thinking skills, social functions begin to deteriorate.

Based on your writing about this disease, which is affecting more and more Canadians, we are asking you to help us raise awareness of this problem. Let caregivers know that they are not alone and that other people are affected by the behavioural problems brought on by Alzheimer’s and, most importantly, that help is out there.

According to the Alzheimer’s Foundation for Caregiving in Canada, Alzheimer’s disease currently affects more than 450,000 Canadians and, more specifically, 1 in 11 Canadian seniors, according to the Alzheimer’s Society of Canada. This number is projected to grow and within just five years, 50 per cent of Canadians will be affected in some way by Alzheimer’s disease.

We want to make sure that, along with the more often talked about memory loss associated with this disease, Canadians are also aware of the behavioural symptoms that develop in nearly all patients with Alzheimer’s disease.

The personality changes in those experiencing dementia are most difficult, after either a good relationship, or in a previously dysfunctional family.

Their tendency to be a flight risk is challenging. We had one person in town (with dementia) walk several km south to the next town until the police finally found him. His daughter was mortified and scared silly. (They primarily walk in a straight line!) Another woman walked hours away from home through downtown Toronto. A security guard spotted her.

Those suffering from dementia have behavioural issues that often cannot be managed. Often they do not recognize caregivers and loved ones. Their displaced anger, agitation, Sundowner's Syndrome, and frustration, plus their lack of inhibitions, are frighteningly difficult to bear.

The great myth is that memory issues are the worst part of dementia. This is not the case. My father would bang his fists on the table saying, "It's all gone to hell!" (A word he would never have uttered previously.)

He grabbed the arm of a staff member in anger; refused to have baths. He would pull the fire alarm. Wandering into stranger's rooms. He was depressed.

Caregivers often have severe emotional reactions to dealing with failing loved ones. We are all at risk in this situation. Having done Hospice volunteer work, I am trained, I know the pitfalls. Some caregivers need medications to get through the emotional and mental health issues. I ended up on anti-depressants. Burned out and unable to do my job.

So get the help you need. Early identification, diagnosis by a medical practitioner, find a geriatrician with experience in this field. Watch for polypharmacy. Take notes when visiting a physician.

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