A Care Giver's Life Song

I wrote this entry several months ago.  As with a few I'm starting to post, the reader should realize my journey through life was greatly affected by the daily pressures of coping with caregiving 24/7, watching lives slip away or being on the precipice of another critical medical event. 

If my writing twists and turns, moves here and there, it wasn't my succumbing to mental decline but trying to adjust to an everyday life that was always on the brink of another challenge or even another disaster.

We focus too little on the care giver, the person or persons who use all their strengths and abilities focused on providing for someone outside of themselves. 

They are the untrained, unpaid and often disrespected men and women who stand beside the young and the old. 

Society claims there are places we can go, people we can talk with -- the truth is there's far more isolation and disassociation for those who are confined, those who must separate from the "normal" every day.

Services?  Budgets overspent. Limited to bare minimum provisions with ongoing needs growing like a Tsunami. 

How do you get there from here when all the time in your day is filled with ensuring the safety and well being of another? 

Who contacts you? How do you find who to contact and what specifically you need, what you SHOULD ask for? 

Those of us who are outside of this system, who are newly entered plunging head first and without any survival gear in place flounder not just with the adjustments to another person's needs but to how we begin the process and move from advancing point to point along the way.

If you're fortunate, just like we say "there's an AP for that", we can say about recognized and supported medical and life challenges "there's an Organization for that". 

The challenge is finding the "right" one at the "right time" and one that still has the allocations, budget, funding and provides the services for which our loved one qualifies according to their specific guidelines and parameters.

As a caregiver wading through these systems, departments, associations, organizations is dependent on the individual with whom you make immediate contact and the questions you know to ask. 

It also depends on their level of knowledge and your level of knowledge of the needs of your loved one. 

That's why it's often important to enter into this "arena" with a Durable Power of Attorney for Health Care as many will not talk with anyone but the individual without this document.

When Mom and our family went through Lewy Body Dementia, unrecognized and unsupported, the LBD Association was in its infancy. 

Today, they provide more online and other support. But they're not as local as others.Perhaps someday the Dementia organizations will collaborate more, will help one another through helping all who need Dementia assistance.

Hospitals release. That's it. Their work is done. 

You're sent to a Dr or maybe to rehab. 

Usually no one walks this path with you and barely gives you choices or possibilities -- just tells you "your loved one needs this" or "your loved one should have that" or "your loved one is no longer capable of staying alone and needs 24/7 caregiving".

They send you to a Dr. They're not knowledgeable about what you really need -- very few are. Many haven't had a course in Dementia in years but they "think" they know. You need a Neurologist but does your health care provide for that?

Sure, if you have the funds, you can get care. 

What happens when the funds run out or they're not there?Trust me, you don't want to know -- but you need to know.

Listening to NPR some time ago, I heard a discussion about Glenn Campbell and his recent song released about his fighting Dementia. He's been diagnosed with Alzheimers. His wife is saying he's in Stage 6 -- losing most of his ability to communicate. He speaks small sentences but cannot understand what is said to him. Sad, but fascinating, these losses of mental processing.

From our own experience and observation, Lewy is a difficult life visitor to determine when it arrives. 

On the outside, Mom appeared to be capable. She was using a cane to steady herself -- we didn't realize challenges with gait/walking and balance were a part of this disease process as we'd never heard of any Dementia except for Alzheimer's and this was not an AZ symptom. But isn't that just what "comes with age"? Especially very advanced age?

Don't you then just "naturally" transition to a walker and eventually to a wheelchair? Isn't that "normal".

IS IT?  Why?  What makes the legs move? Signals from the brain. What makes us capable of walking up and down stairs, in a straight line? Our brain.

As so many have done, we wrote off so much to "aging" and a belief any behaviours were "normal" when you get to "that age". 

Today, I believe we weren't seeing the signs and the behaviours; but that was in a time when we'd never even heard of Lewy Body Dementia and when LBD, when it was written about, was believed to affect only less than 5% of the general population.

Just a couple of years ago we were told by a State of Missouri Adult Protective Worker, at the management level, with a Masters in Social Work:

"If your Mom doesn't have Alzheimer's, she doesn't have Dementia."

Hope whatever school he went to has revised their training program and the DHSS has opened their eyes, their ears and ensured their Adult Protective Workers and others have extensive training in Dementia and ALL ITS TYPES AND THEIR CHARACTERISTICS.

So many "slippages" we overlooked, minimized.

Mom covered up smiling, laughing, saying how silly her actions or words were. 

After all, when someone "recognizes" they've made a mistake, isn't that good, cognitive thinking and analysis?

Apparently not or perhaps the disease had kept open this part of her cognitive reasoning ability while affecting others and as we saw in her advancing through LBD this "recognition" would become less.

Mom retained this "self recognition" almost to the end. 

A part of her mind still tried to regain control at times and she'd laugh and say, "That was silly to say, wasn't it. I don't know what I was thinking." 

And then a few minutes later, she'd slip into Aphasia with "WA WA WA" meaning something to her or "BA TA SA LA LA" meaning something else.

This "made up language" -- as we see it -- sometimes was retained and repeated and other times different sound combinations often strung together and still retaining a "sentence structure", if you will.

It was as is often mentioned by those who share information on Lewy Body Dementia on www.lbda.org a roller coaster ride for her and for us. 

Can LBD be advanced through the world around us? 

Can we lose more capabilities through isolation, lack of challenge and new opportunities?  

Can we affect the ability of the mind through our surroundings?  

For that perhaps we should talk about the children in foreign orphanages who are said to have difficulty adjusting to relating to caregivers due to lack of caregiving. Or, how about solitary confinement or war and imprisonment?

Is our brain as we age so very different from our brain as we develop during the years from birth into adulthood and beyond?

I often wonder if her brain incapacity development possibly escalated within the facility as she sat by herself, alone and without anyone to talk with but herself. 

No radio. No TV. Mom didn't want one. For some time she'd had difficulty operating a remote but looking at some of them even today, they're becoming more and more complex rather than simplified.

But then, based on what we observed as her taking apart a lamp we had in her room, constantly unplugging her electric clock and turning it upside down or backwards on her bedside table, these typical items she was so familiar with for so long were sometimes now a source of possible challenge and even of injury and so we made the decision to remove and replace with ever simpler similar objects.

We had to remove a picture she was given from the grandchildren and great grandchildren -- a family composite of the three grandchildren and their spouses and the four grandchildren at the time. Mom would become upset because they would "talk" to her, they would move out of the picture and around the room. We often found the picture on a slant and sometimes even taken down.

Mom became obsessed with packing and unpacking; she wanted out of the facility, that was obvious. However, the outside influence of J. visiting and the "new stories" about a "male visitor" who was going to "take Mom away" and move her out of the facility (a story that ebbed and flowed with the visits of J and we saw as being influenced by and constructed by this Undue Influencer; the stories ceased when J was not visiting and reappeared after her visits).

Mom fell a lot.  Balance and gait in Lewy Body Dementia are affected. The facility wouldn't acknowledge Mom's "outside of the Dr from the facility" diagnosis of LBD. They didn't provide the level of care she needed. Instead, they "allowed" her "individual rights" to say "NO" and asked her questions, like about participating in movement "exercises" instead of giving her personal time and working with her on movement.

Looking back is always clearer than looking forward when you're walking a path you've never taken and all around you is a vast wilderness with only an occasional reference point along the way.

Here's to the unsung heroes of society. Those who walk the paths of life alongside people of all ages and stages of life. 

Their journey has a beginning and an end but it's always the way they choose to travel even in times where they appear to have no choice that shows us how honorable their life choice is to simply provide what's needed.