"Sundowning"

As dementia worsens, a pattern of increasing confusion and agitation occurring late in the afternoon and into the evening hours develops. At first insidious and unpredictable, this so called sundowning phenomenon becomes the norm for many elderly persons as the affliction of aging brain takes over.

This last week has been rough for Mom. Around 5 PM, she starts in with a restless and inconsolable anxiety that usually persists until she falls asleep after 8 PM when the overnight caregiver arrives. These few hours are long for Dad; he is alone with her, tries to comfort and assuage but loses patience sometimes. This heart breaking pattern symbolizes all that she has lost and is a harbinger of more difficult times to come. I ache inside for the person she was and wish there were something we could do that would make a difference.

My instinct is to jump into the car when she calls me in a panic. It was easier when the trip was 4 miles one way; harder when it is now 13 miles one way. The other night I raced up to see her, to fulfill her request that I literally "hold her hand". I walked into the room to find her fast asleep. The 35 minute drive through traffic is long and lots can happen in that period of time with caregivers coming and going, medications kicking in, and Dad trying to smooth things over. Sleep eventually comes and the other night was an example of sheer exhaustion winning out over the terrors of her mind.

I know Mom needs to be in a setting where personalized care, comfort, and reassurance are ever present and staff have the special skills to navigate through these rough hours without being pulled in all directions. The next step of this journey is to explore new options, a grueling process of upheaval for all involved but especially for Mom and Dad. My biggest regret in this arena is that I did not know "back then" what I know now. My fear is that I still don't know it all and that whatever move we make on their behalf still won't be quite right. Why can't we get these most loved and cherished elders the tender loving care they so desperately need and deserve after so many years of faithful service to their family?

Slipping Under

Staying true to my personal metaphor of "the wave", I'm slipping under. Correction: beyond slipping; I am under the wave. Isn't it said that somewhere beneath the crashing froth of the surface, there is some calm? Maybe yes, maybe no. For me right now slipping under is anything but an acquiescence. Things keep happening that have pulled me under. And right now the water below the surface is chaotic and unpredictable (another irregularly irregular experience). There is no riding ahead of the wave; that state of being is not in my future just now and I have to wonder if it ever has been these last 18 months. A dream, a goal: that's what ahead of the wave means right now.

On the one hand is my 90 year old mother. On the other hand is my 20 year old daughter. 70 years separate the two and I stand between them. Both are in need of my energies as though I am the one and only who can provide what they need. Thank God for dedicated caregivers for Mom and for a second parent (thank you Denny) for my youngest. Were it not for help, I'd be in the asylum today.

At this moment, things are calming below the wave. Mom had a good night's rest after finally getting the proper night time pills. A SNAFU with medications led to a disastrous day yesterday with mounting anxieties which forced two round trips up north to Crista, burning gasoline. When I arrived the second time at 8:15 PM, she had fallen into a deep and peaceful sleep (finally) and caregiver Kari had ministered to both Mom and Dad's needs with gentleness and compassion. They both love her and so do I. Kari and I sat on the couch and whispered stories and updates about "the situation" for 45 minutes. I value her observations. As the daughter I may think I'm getting accurate updates from the sources themselves but I don't see the bigger picture. Obviously. Mom and Dad are not where they need to be right now.

I'm grateful that MM and John are taking the lead on the "next step" for Mom and Dad's care. I am overwhelmed with the day to day slogging through and unable to imagine anything but what we already have in place. There is no fuel left in me for creative thought on this issue. I need help; have asked and have received.

On the opposite pole, my energetic youngest, although advancing by leaps and bounds into the world of adulthood, still benefits from and snags my hands-on attention from time to time; like NOW. No details to be revealed but at 3 AM I got my weary bones out of my bed and lay next to the bed of my dearest daughter. I have forgotten what it feels likes to lie on the floor on a yoga mat; thank God for clonazepam as I did fall asleep, finally.

What's hard is steering the course between the many and varied needs of those I love. Granted, I'm a sucker for the "hold my hand" requests but I challenge those faced with the same or similar scenarios to behave differently. If you can, you are definitely riding the wave better than I. Today dawns a new day. And tonight I begin "on-call" duties for the three day weekend ahead. I dare not ponder what adventures in doctoring will be tossed my way; one never ever knows.

Addictions

Addictions come in many forms. I usually think about substances: alcohol, tobacco, other drugs but obviously there are many including gambling, sexual, shopping, hording, and the like. The "disease to please" is also an addiction. Although I've never acknowledged that this one fits me well, I probably should have. Duh. I believe we rationalize our addictions and call them anything else before we finally deal with them head on.

Maybe I'll call this the "care giving" addiction. In one way or another, I've been doing this to excess for decades, definitely since my first born entered the world. Before that I was me, myself and I for the most part. But, this care giving issue extends way beyond raising children, an acknowledged critical, selfless, and necessary role. Beyond children the addiction of care giving is like being "on call" for the world. For me, at 53 it is bigger than it was at 33 largely because the roles and the rules and the situations have changed. At the time in my life when I would like to be scaling back on my professional roles, work is tugging at me with phenomenal force. At the time in my life when I would like to be discovering other talents and interests, there are always things I place ahead of a committed exploration. Blogging may be the one (small) exception. At the time in my life where my children need rely on me less, my actions tend to strengthen their need of me. I own this; I get this.

As for care giving in my fifties, the roles are varied but none of them seems to nourish or give back enough (so sayest my trusted therapist). The operative word is enough; in my world the yin and yang is out of balance, the scorecard skewed, the emotional depletion titer sky high and on and on. As I lamented over my need for more and more medication to battle the insomnia that plagues my every night, worrying that I'm fueling an addiction to soporifics, my trusted advised, "I'd be far more concerned about your addiction to care giving." Kaboom, light bulb moment, revelation. I've never heard it said quite like this.

When epiphanies occur, the universe coughs up illustrative examples, or shall we say opportunities, to shine more light on the matter. Within hours of my acknowledgment of said addiction, there were three situations that popped into my life; chances to say YES (and slog through with disgruntled acquiescence) or to say NO (and live with guilt down to the core). Difficult choices these. I see that in my current state of mind, both choices are "no win" situations. There seems to be no way out. Trapped with the feeling that whatever choice I make, I won't have contentment, ease, or peace of mind. Sucks. What I must work on is eliminating the guilt. Guilt, or more specifically the need/desire to avoid the feeling of guilt, is the powerful fuel that gets me out of bed in the morning (my post on 5/2/08: The Truth of it Is explains). Making my way through the day without feeling guilt allows me to keep my eye on that prize: the horizontal position, back in bed, done with my work for the day. I have to ask, if it weren't for the G word, would anything ever get done in my life or would I just stay in bed? Reasonable question.

People have been talking about this issue forever. The number of self help books on the G word and similar topics is phenomenal. Remember the book from 1975 entitled, When I say No, I Feel Guilty by Manuel Smith, Ph.D.? That avoiding the feelings of guilt can be such a powerful motivator and bitter pill to be reckoned with is worth acknowledging. In my case, avoiding the G word and all that it encompasses is the secondary gain I get from care giving. We never do things with addictive predictability that don't have some degree of kickback even if the reward is self destructive.

Enough said for one day. As for what I will do with the three requests for my time and energy that arrived to challenge my predictable patterns, I don't yet know. I'm still thinking and that 's not necessarily a good sign.

Irreverent

Would that this miracle pill exist....prescription anyone?

The Cat's at Kitty's House

He's such a cat, this one....

It's hard to believe that Boo has been part of this household for almost a year now. He fits in well and we love him.

Formerly the cat in residence at the McGrady home, Denny points out that the last time we saw Kelan McGrady he was quick to say that he still had a cat named Boo who just happens to "live at Kitty's house". Cute.

Blame it on the Boogie

Sometimes I have to hunt for tidbits of joy in the midst of the mud. One of these unexpected moments came in the form of the Jackson Five hit single "Blame it on the Boogie".



I was at the pool swimming laps and towards the end of the hour, the two (teen aged) lifeguards cranked up the volume on this tune. I spotted them out of the corner of my eye dancing poolside to this most cool music from exactly 30 years ago. Some hits just never lose their groove and this one is no exception. There weren't many people left in the pool but those that were (sans one totally committed and serious woman oblivious to the music) just had to move to the beat (and I don't mean swim). One guy, probably my age, started dancing in the pool and mouthing the words. A younger woman sitting in the adjacent shallow hot tub swayed from side to side mouthing the words. As for me, I couldn't resist and got totally silly with my swim, couldn't control my feet and blamed it all on the "boogie".

Ahhhh, the power of music.

Wake up call

"The days are long but the years are short."

This short video is very powerful. I know that the not so subtle advice could be applied to my life right now. Now. Yet, I focus on the past and how much I could have done differently, how my attitude toward those long days was all wrong and how sad I am that they are over. Forever.

For those out there who still have a chance, embrace these days.
As for me, maybe I'll wake up to the fact that I can still embrace these days (the now days). Why is it so difficult? If I don't heed my own good advice, in ten years I'll be saying "if only I had...."