Nana is Kicking Butt and Taking Names!

Warning! If you know my family or are triggered by abuse topics, you may not want to read this.

My mom's in Moccasin Bend Mental Hospital this week. She had an "altercation" with a fellow resident at the nursing home, who then had to go the hospital. HIPAA prevents the facility from giving us details, but within 24 hours my mother was in the back of a police car traveling the 50 miles to Moccasin Bend.

Two weeks prior, she wandered into another resident's room and began messing with his stuff. In that altercation my mother wound up with some scratches and a black eye, but he said she hit him first.

For weeks she's been refusing medicine, spitting it out, and fighting. A nurse told me "I got her to take her medication, I just had to have someone help me hold her arms and legs down, because she was hitting and kicking." She fights with staff during her showers, dressing, and toileting.

The year is 1984:
It's an ordinary evening and the TV is on. When I enter the living room my mother is on all fours across from the couch. My father's feet are resting on her back. She's the footrest. I have vague memories of her "deserving it" and "not being worthy" of being treated like a person.

The year is 1982:
My mother is playing Pong and crying. My father was "out of town for work" again. That is what we tell everyone at church. He was with his other family - although, we never called it that then. We were supposed to accept it as normal for him to spend every weekend with C. and her 2 young kids. Her upset was that he came home as if to spend the weekend with us, then picked a fight and left for Knoxville, and made it her fault.

The year is 1980:
My mother is being yelled at for falling asleep at 3am. My father was "really on a roll" talking about some amazing stuff. Her sleepiness proves that she doesn't care about what's important to him.

The year is 1978:
My mother is paraded in front of me to tell me a story about how she wronged my father in 1966, the year I was born, and again a couple of years later. It's an exercise in shaming and it won't be over until she's told it all.

The year is 1988:
It's very late. I'm visiting her and her second husband and it's Christmastime. He's drunk and he's mean. He berates her into telling me some degrading story about a wrong she committed. It feels very much like 1978, and it's so surreal that I can't now summon up any details. It felt like a sickness, very, very old. The origin, I can't know. She's sobbing, but she does as she is told.

The year is 1977:
My father is running late for work and she can't wake him up. He's perfectly healthy, but asleep. She feeds him oatmeal while he's dozing in bed, propped on one elbow. She gives him a shower while he leans against the wall, sleeping, and then she dries and dresses him. It's not the first time, or even the twentieth.

The year is 2007:
I visit her at her assisted living center and notice an unfamiliar name on the sign-in log to visit her. As I chat with my mother she shows me a gift from a bus driver at her day center. After some investigation we discover the truth: a married employee at her day center has visited her at her home, used a false name to sign in, and had sexual contact with her.

Now it's 2012. She was diagnosed with Alzheimer's and/or alcohol dementia in 2004.
I tell her story now because she can't.

"Nana is a bad ass", say her grandsons. I'm kinda glad. For years in her disease she was docile, good-natured, and pleasantly confused. For the last year or so it's been different.

It wouldn't be wrong to call it the natural progression of the disease. But is that truth? Who knows? What harm does it do if I reframe it? Perhaps she's fighting back. Perhaps at 63 years old, some part deep inside of her is angry - seething - and is going to be heard.

You go, Nana!

Bringing back the veil

We admitted my mom to a nursing home this Monday. It's a nice little family owned psychiatric-specialty nursing home about 50 miles away. It took almost 2 weeks to find a placement for her - out of 14 facilities, only 2 would accept her. And that was after we narrowed our list to facilities that offer secured or dementia units. The one place we didn't choose was some kind of cult-owned sanatorium and boarding school. I wish I was kidding - they have the boarding school students work in the nursing home.

It's too soon to tell how she'll do in the new place, but early indications are good. The staff are working hard to help her adjust and are communicating with us daily. The facility is located an hour and a half away, so we can't just pop over if we have a concern. Inconvenient, stressful, worrisome. But we're coping.....

So with great difficulty, I've returned (somewhat) to my normal routine: picking up kids, running errands, working a little. My darling husband had an inconveniently-timed stomach virus, which kept me from taking to the bed for a day or 2 as I had planned. I participated in basics of my life, but was virtually lifeless myself. I got stumped by questions like: what's your billing zip code? I declined to participate in all manner of social chit-chat and behaved badly to at least one sales clerk. I told my husband he had hit the expiration date on the number of sick days in bed for his illness. Fortunately, he really loves me. A lot.

What I really needed this week was a "pass" from social and behavioral expectations. Some way to let people know that even though I appear to be present, I'm just barely functioning. I'm thinking of some universally recognized, visible symbol to let others know that I'm in a mourning period.

So here's my idea: we bring back the black veil. Anyone in a mourning or grieving period can wear it as a symbol for others to "handle with care". We all know that in the matter of a death or other trauma, it takes more than the 2-3 days off work to cope with the new reality. The brain gets foggy; simple decisions become really hard. But life still goes on: groceries need bought, bills need paid, kids expect to be fed and driven to school.

My week would have been a lot easier if I could've worn the veil. Each morning when I put it on, it would be a reminder to myself to take it easy and not expect too much. Interactions at the store become easier. Cashiers either stick to the basics or begin with "I'm sorry". When someone asks "how are you?" it would be with full understanding that the answer may be brutal and ugly. The people I work with would know to speak slowly and in short sentences, and save the big problems for another day.

There's no time limit on it - you can wear it as long as needed. It's generally accepted, however, that you do save it for the big stuff, not just don it as a way of life. The only requirement would be that it is a true and honest reflection of your emotional well-being at that time.

Which got me to thinking...what would it be like to look around and see that several of us are wearing the veil on any one day? Would it change how I am in this world to see that others are struggling, too? Would I make a different choice in the morning and leave my veil at home?

Maybe. I do know that life goes on, whether I participate or not. I think making a conscious choice to opt out and not participate for a day or 2, would make it that much easier to opt back in and fully live. But not until I'm good and ready.

Thanks for reading,
Melissa

We make our own meaning

It's meant to be a comforting statement: "everything happens for a reason." Or it's counterpart, which is "it must be meant to be." Rather than comfort, these phrases bring me anxiety. Call me a freak, I don't know. I think it's the lack of control and passivity implicit in those words that I don't embrace. There are subtleties about "letting go" that I just haven't gotten yet. (I'm sure there's a reason that I haven't gotten it yet....but I digress.)

"Everything happens for a reason." Ok, but not knowing the reason makes me half crazy. Am I supposed to try to figure it out, or not? I'm confused. If there is a reason and I don't know it (at that moment in time) there may as well be no reason. I still sit in anxiety.

What does bring me peace is flipping the phrase. How about: "whatever happens, we can find meaning in." I can accept that things happen because things happen. And we can create our own reasons for how or why things happened that support and empower us. Alternately, we can create our own reasons for why things happened that hurt and dis-empower us.

Basically, nothing happened today. At least not with the issue at hand, which is my mother's discharge disposition from the geri-psych unit. The meaning I take from this is that when it's out of my control, nothing makes a difference - I might as well be at peace. I spent half the day frantically trying to make something happen, and the other half anxiously waiting for something to happen, and the end result was the same: nothing happened.

With all the uncertainty of what lies ahead, for both my mother and me, we'll find meaning in it. She'll find a way to be happy (in some weird way, she always does), and I'll find joy in her good days. If she can still find a way to be happy, surely I can slow down and enjoy the moments of my life as they unfold. Whether there is reason or not, I can be at peace.

Are you kidding me?

Mom's nuts. Talking to her stuffed animal kind of crazy. But most of the time pleasantly so, and in her defense, goofiness runs in our family.

Given the above, and the fact that mom has recently had 2 admissions to the geri-psych unit to get her meds adjusted, we're looking at a nursing home placement. Oh, and she has Alzheimer's.

With much kicking and screaming, I came around to the idea. I was the last to get there - I have very little faith in these nursing homes, and I think my mom can still be managed in a less restrictive environment, but I came around.

OK, so well-meaning, condescending Case Manager from Hell gave us three options: take her home (never gonna happen) or one of 2 specific nursing homes. According to said case manager, these are the only appropriate facilities, and they are both well prepared to handle combativeness and dementia. And by the way, she made her recommendation before my mother even stepped in the geri-psych unit or had a single med adjustment. Really?

So my brother and I tour them both. I hate #1 but can live with #2 as can my brother, so we say yes, she'll go to #2. Well, by the time we've made the decision, #2 decides they won't take her but #1 will.

We think, we ponder, I cry. A lot. We research other options, and finally get comfortable with #1. It's hard - the place smells like pee, has a shower room that looks like a dungeon, is dingy, dark and chaotic, and 1 hour away. But we can do it. Great. Decision made.

Oh wait, what was that? Nursing home #2 changed their mind! They won't take her. Are you kidding me?

What changed? Well, she's doing better. Her medication is managed and she's now 4 days with perfect behavior and in good spirits. So she's doing too good for the worst nursing home, but is too great a risk for everyone else.

Actually, I have no idea what happened. Because these kind of things only happen on a holiday weekend when you can't get anyone on the phone. But tomorrow, I'll be sucking up to Case Manager from Hell, fully prepared to hear how this was somehow my fault. Maybe if she doesn't have to struggle with the Unrealistic Daughter (that would be me), she could make a miracle happen.

So what's my point? Here it is: in this land of no options, I can still choose how to be and where to stand. I don't like any of the circumstances right now, but for tonight, I'm gonna stand in love, live with hope, and continue to be firmly grounded in reality.

Alzheimer's sucks

Today I brought my darling angel with me to do the obligatory, bi-weekly trip to the Alzheimer's unit to visit my 62 year old mom.

Every other week is the precise frequency of visits required to keep guilt at bay. More often, and I dread the visits and try to rush through them. Less often, and the guilt gnaws at me, keeping me away from that side of town. Then when I do visit, she's usually had some major change that makes me feel like the worst daughter on the face of the planet. Since I have one brother, we each take every other weekend. We employ a "don't ask, don't tell" about the other's visit (reduces guilt), and we will both trade any amount of guilt for not having her live with either of us.

So precisely 2 weeks after my last visit, we drop in to see her before dinner. As I tell these kinds of stories, the question everyone wants to ask about now is "does she still know you?"

No. Yes. Sort of. Her eyes change when she sees me and my 4 year old princess. We hug and kiss her, and she hugs back. I say "I love you", and on a good day she says "yes", then laughs when I tease her for not reciprocating.

Today, she was sitting at the table with 6 or so other residents, beside a crotchety-looking old man reading a newspaper, and crying silently to herself. My favorite nurse said "I'm so glad to see you! If you didn't come by today I was going to call." Suddenly, I'm not nearly as glad to see her as she is to see me.

So the story is that my mother, who has forever defined her life around a man's opinion of her, has hooked up with the newest resident in her unit. As in swapping saliva in the day room. Trying to go into his room at bedtime. Ooo, yuck, please make it stop!

And this is the hell that's my mother's Alzheimer's disease. To relive the theme of her life, day after day after day. Other victims of this disease spend their days getting ready to go to "work" or waiting on the long deceased husband to come home. My mother finds the most self absorbed, charming, alcoholic (or former alcoholic) man in the room, and attaches herself to him. Wraps her life around him. And in her diseased state, she wanders around sobbing when she can't find him. She sits beside him weeping when he ignores her. When he gives her some attention (or more likely remembers that she's the floozy in the building) she's blissfully happy.

Only it never lasts. He looks away, and her reason for living leaves. Dementia or not, the roller coaster is real and brutal. Absent a man, her quality of life is not too bad, given that she's 8 years into this disease. She jokes around, enjoys her music and her things, and recognizes her favorite people.

Does my mother remember who I am? That question doesn't concern me at all. The real question is "does she remember who she is?" Sadly, yes. And not in a good way.

So what does this mean for those of us working our way up the emotional evolution ladder? If dementia should take me, what familiar struggles will my brain replay? I think of myself as much more evolved now, in my 40s, than I was in my 20s or even my 30s, and I've moved on to a higher order of problems. Will my generation - with our years of therapy, support groups, and inner work - present a different picture when Alzheimer's rears it's ugly head? Perhaps I'll be wandering the halls of the dementia unit trying to remember my soul's purpose, or distraught because I can't find my inner peace (I'm sure I left it around here somewhere!)

Perhaps, when my memory starts to go I'll start leaving post-it notes for myself that say things like "don't forget to meditate" or "remember, love is all that matters". And then I'll look in the freezer and my inner peace will be right there where I left it.