Sorting through memories

It will soon be six months since my Dad passed and I haven’t yet sorted through all his ‘stuff’.  It had taken me over two months after his passing to move his toiletries out of the bathroom.    It just did not occur to me earlier that we would not need them anymore.

Going over some of his other things last week, I came across carbon copies of letters neatly preserved in a box.  Most were of the mundane sort addressed to banks, utility companies or local authorities.   My Dad had kept a copy of his correspondence using a carbon paper and had preserved the copies in this box and I felt compelled to read them all.  These were hand written in the seventies and early eighties and I marvelled at his neat script, at how well he had written without an erasure or over writing and at his command over English though it had not been his medium of instruction at school.  The way the copies were arranged in the box reminded me what a tidy hoarder he had been.    Everything neatly folded, labeled, packed and kept. Nothing discarded.

I am afraid that my real memories of my Dad before he had dementia are getting dim.   Most of my memories are only of the last few years, the times when he spoke  less and needed complete care.   Perhaps the regular regimen of caring for him has actually replaced the memory of him from the earlier times.   

We realized that we had very few photographs of our mother only after she died suddenly.  Therefore, we consciously took more photos of  Dad. This was easier with the advent of cameras on mobile phones in the last few years.  However, even these are only from his dementia period.   Has his dementia robbed us of our own memories of the time before he lost his?

If I could put the clock back, I would make many more photos and videos of my parents in the days before  Dad had dementia.  Technology allows it now.   Dementia as they say is a long goodbye and in the daily routine of care giving, we forget to put aside memories of the good times and even the good days for us to look at and remember after they are gone.   Without these, the only picture that remains in our mind’s eye is the way we saw them in their last days.  

I put back the carbon copies of his letters back in the box and in the “to keep pile” because I have not the heart to get rid of them.   Did I keep these to remind me there was a time when he did not have dementia, or perhaps I am turning into a little hoarder myself?  Sorting through memories is such hard time consuming business.

Support groups for caregivers

Swapna writes “We caregivers can form our own communities.”     This is a simple solution to many problems faced by dementia caregivers.  

There was no functioning support group to help when we needed it most in the early stages of my Dad’s illness.  The doctors had not cautioned us about wandering and incontinence.  We did not know what we were facing.  Though we found much information online, there was very little in the Indian context.   Support groups were non-existent in my city.  We struggled to cope.

I had chance meetings with other caregivers at doctor’s clinics or a phone number passed on through friends of friends who had heard of others with similar ‘problems’.  I grasped at these and made contact and found they were just as happy to make my acquaintance.  

We shared notes, gave each other tips on the day-to-day challenges, and marvelled at some ingenious solutions.  Most importantly, it gave us a chance to talk to someone who understood.    It was a revelation to know the greater challenges some other caregivers had to deal with in the face of which my own patient management issues were small potatoes.    Some had real financial issues, in-law trouble, trouble at their work place all caused by the illness that affected their family member.  I could not offer them solutions, but they often only wanted to think aloud what they could not discuss with anyone else they knew without being judged or criticised.

There are many aspects to a long-term illness like dementia.   The challenges and stress are different at every stage of the disease.   There can be no ‘model’ or ‘one-size-fits-all’ solution.  Nevertheless, the learning of each caregiver can be shared to form a collective pool of knowledge.  

Without this, as Swapna says, “Every family is forced to reinvent the wheel..... Communities where we are able to talk about situations, and hear from others whether they’ve faced similar situations, what could have caused it, what worked, what didn’t work  ....Caregiver communities collectively enable caregivers to become better and more informed caregivers.”

This is why we need a forum- a bulletin board where topics are presented in threaded fashion.  It would greatly help newbie caregivers tap into the vast pool of knowledge that  caregivers with experience can help create by contributing and sharing online.   It would be easy to search through bulletin board conversation threads to find the situation that is most similar to their own.  They could also post their queries and be readily helped by experienced caregivers.  This will ensure that the experience and body of knowledge gained over years of care-giving in diverse situations remains intact.   It is for this reason, a bulletin board exists at 

http://caregiverfriend.phpbb3now.com/viewforum.php?f=2

Please visit this forum, join, share your experiences, tips, suggestions anything else that will help build this collective body of knowledge that we as caregivers share.

Read Swapna’s blogpost about online caregiver support groups at  http://swapnawrites.wordpress.com/2011/11/11/online-caregiver-communities-for-dementia-care-supporting-each-other/

Tips for seaching for a missing person with dementia

Despite all the precautions one takes, it is possible the person with dementia may wander off unnoticed.  Here are some tips for searching a missing person with dementia.

•  Look within a one kilometer radius of where the patient was before they wandered.
• Check dangerous areas first near the home, ponds/lakes/wells, forested areas, tunnels, bus stops, terrace of buildings and water tanks, and roads with high traffic.
• Look within a hundred feet of a road, as most wanderers start out on roads and remain close by.  Check bushes, ditches and nullahs carefully as the person may have fallen or become trapped.
• Search in the direction of the wanderer’s dominant hand. People usually travel first in their dominant direction. (ie. right handed person would turn right – usually)
• Investigate familiar places, such as former residences or favorite spots. Often, wandering has a particular destination.
• If you suspect that the person used a car or public transportation, you’ll need to consider likely places that are farther afield.
• Contact as many people as you can to enlist their help in searching and locating the missing person soonest.  If the missing person remains stuck in a place they are unable to get out of, they may get dehydrated or hypothermia.
• Remember the dementia patient may not call out for help or even respond to your call.    

Over Half of Alzheimer’s Cases May Be Preventable, Say Researchers

Researchers say over half of all Alzheimer’s disease cases could potentially be prevented through lifestyle changes and treatment or prevention of chronic medical conditions.   The biggest modifiable risk factors for Alzheimer’s disease are, low education, smoking, physical inactivity, depression, mid-life hypertension, diabetes and mid-life obesity.   Read more here http://www.dementiatoday.com/2011/10/21/over-half-of-alzheimer%e2%80%99s-cases-may-be-preventable-say-researchers/