When The Child Becomes The Mother

Lewy Body Dementia has been trying to destroy our family.

It's making great progress with the help of people who chose not to see or accept the reality of this destructive and devastating terminal disease.

Fast forward with a step backwards. Spent four hours with Mom from five to nine last night. Had a phone call around 1 PM, it was a Sunday, alerting me Mom had fallen in her bathroom at the Skilled Nursing Center (SNC) where she now lives. Was working and couldn't get to her; made sure she was not injured and held my breath wondering what I might really find when I arrived.

Falls are common with LBD as the body motor functions and mental functions do not always work together at the same time. Her feet "stick to the floor" (which Mom blames on her "new" shoes; slippers she's worn for many months) or arms do not support the shift in weight from wheelchair to commode (and she definitely will not ring for help; they take too long; they're too critical).

The reality is the brain's messages do not always reach their intended functioning part while the brain believes they have and so an "accident" happens because the body generally moves to some degree but not with the support or ability it should have.

There are many reasons for her refusal including the most obvious: Mom wants to retain control of the basic parts of her life and toileting is one of the most basic. The diminishing ability and the frequent loss of bladder and bowel function that has been more and more prevalent is probably a sign of more significant physical changes internally. We've noticed some patterns and try to watch for related developments/causes.

LBD and Dementia raise the level of risk taking we tolerate/allow in our loved ones to try to give them as much "personal freedom" as possible. So very like holding a child's hand when crossing a street and eventually turning loose believing they'll be cautious; turning over the car keys for the first times.

With a child there are so many "firsts" and so many "what if's" gone through with children as they grew up to look forward to. With the adult "child" going through Dementia we don't look forward, welcome or anticipate these changes. Children become more independent; adults become more dependent. 

We're on a backwards, not a forwards journey and we travel on a roller coaster. Some days, even some hours, change and fluctuating abilities cause sheer exhaustion on the part of the care provider. You never know what "age group" you're dealing with or what "level of ability" is actually present.

Last night Mom talked nonstop; knowing the family history so well I heard years and events mixed up, run together and totally opposite from what we'd experienced in the many years we shared together.

She didn't recognize me and so she talked to me as though I were someone else. She was not at all happy with "me/her daughter" that evening so this "person" heard about all the "bad things" her daughter did to her and continues to do to her.

Swallowing my pride many times over I listened and allowed her to "rant". My concerns are the uninformed attendants and those "examining" my Mom who don't know the real family history and actually believe these distortions and twists of reality. That's where understanding Dementia and especially Lewy Body Dementia are so important.

It was rough. Sitting there and having her negate our lives together when we'd spent almost forty years as a multigenerational family. I know I'm supposed to "redirect" her but even when I told her who I was she would remember for a while and then she'd forget and we'd be "off and running" again.

As hard as it was to sit there and be verbally abused, I felt perhaps she needed to "vent" and blame me for her being somewhere she'd never wanted to be, a Nursing Facility.

My problem has been workers in the facility and even others I've encountered along this walk on the LBD pathway who listen to Mom and believe what she says accurately describes her life and realtionship with me. It also doesn't help to still have to tolerate an abuser who continues to visit my Mom and who I can't stop from seeing her; a story for another entry. It's a nightmare that's worse even than LBD.

Mom inserts words with no relationship to what she's talking about and when one time she realizes her mistake, laughs and covers her mistake by saying how silly she is and how she's just getting older and sometimes her mind just doesn't work as well. Of course, she also believes she recently married a man she hasn't seen for about seventy five years who was just an acquaintance.  Another time, another story....

She sleeps... a lot.  She needs help cutting food into pieces but as she said last night she didn't want help because they cut it in front of her. She lets me and my daughter do it for her but someone else doing it, as she said, is too much to bear...not being able to do it for herself. 

She needs clothing paired and not too much in her room or she can't make a decision on what to wear and spends the day dressing and undressing. This is a real challenge because she's started soiling and wetting her clothing and if I don't visit almost every day she ends up having very little to wear.

She has "tantrums" where she suddenly gets very angry at others; I'm a prime target.  She cries and "whines" about many things and then suddenly she stops and a few minutes later can be smiling. She's somewhat incontinent; it varies but it's becoming more and more consistent; she forgets to put on her "paper pants" and she wipes herself and then uses the toilet tissue as a washcloth on other parts of her body.

This "obsession" with washing has come on in the last few weeks. I've found her stark naked many times in her room or in the bathroom. She might have had a shower that day or not. She may have already "washed" for that day or not. But stripped down, often without clothing in sight.

Sometimes I've entered, stood aside and watched as for fifteen minutes or longer she starts washing, gets distracted by something (usually it's something she talks to herself about or to her "imaginary friends") and starts all over again time after time after time until I announce my presence and interrupt the endless repetition.

Last night after finally convincing her to eat the food on her dinner tray set in her room because she'd fallen and didn't want to go to the dining room, placing the towel she wanted as a "bib" around her neck and one on her lap, I convinced her to eat her dinner.

Another Lewy Body Dementia "sign", the tremors in her hand cause many bits and pieces she finally manages to get on the soup spoon she usually uses to feed herself to fall everywhere. 

After tearing her egg salad sandwich in half and turning away to reach for something, I turn back to see her with half a sandwich in hand using it as though it were a bar of soap and rubbing it all over her other hand and arm, switching hands and doing the same to the one she'd originally used. 

What a mess!  I've learned not to "react" to these totally incorrect actions but egg salad isn't exactly easy to control as it drips and drops all over the tray, her and the floor. 

Mom didn't even realize what she'd done but when she finally felt "wet" and "sticky" she asked why and when I told her what she'd just used to "clean herself" wasn't soap but the sandwich, she laughed and just went on to eat and continue talking -- often with her mouth full of food.

Mom shouldn't dine unsupervised but the facility can't seem to understand or doesn't want to (more later about the financial gain of SNC's in not fully recording or evaluating various physcial and mental needs) because some days Mom's behaviour seems quite "normal" even if her ability to self feed is compromised.

My Mom. My amazing, self sufficient, "rock", my life who held everything together and who was my pattern for becoming the woman I am. She's slowly disappearing and I'm focused on learning where this road may lead so we can both walk down it together, supporting one another as we always did.

So hard to watch; to listen to; to talk about. So needed to share this journey which others seem to pass by and not discuss perhaps because it's so "personal".

Specific descriptions of behaviour shocking? Not "polite conversation"? If only someone had told me exactly what could happen even these "non polite" situations would have been less shocking and could have been handled better. Mom's facility doesn't "share" this information; I have to see it to know it's happening.

I see sharing these most challenging behaviours and experiences as a real guide. A guide to living with and surviving a loved one's journey into an abyss so dark and tumultuous that any light provided slows the descent and adjusts the turmoil for those who are slowly being left behind, in the dark and without the amazing person who's shared their life and their love. 

Mom continues to teach me as she always has. The only difference is the child is now the mother in so many ways. Adjusting, finding ways to understand and believing tomorrow will bring a better day when today has drained me through work, caring for Mom and continuing adjustment to becoming a widow, is why I'm starting this Blog.