Tuesday, October 29, 2013

This is The New Reality

Forty-five minutes of conversation about caring for my mother took the place of visiting with said mother today.  The owner, the nursing supervisor, and I sat in the office in the pod-castle while the subject of our conversation, my aging-none-too-gracefully-maternal-unit, slept in her recliner.  I didn't ask her if she wanted to join us.  I didn't want her to be there.

This is my new reality. I have her teeth pulled without seeking her opinion. I make plans without consulting her. I decide and she lives with the consequences.  I know that she trusts me and that she loves me and that she knows that I love her too, but, until very recently, we were in this together. Now, I'm in charge and she's out of the loop.

It's not that she'd be an effective participant in the loop. She can't remember where the questions began, let alone formulate a coherent answer.  I try to break things up into manageable pieces, but the ability to hold onto the information is lost to her. I never offer more than two choices, and I try to have a visual aid at the ready when the question is asked.  "This blouse or this blouse?"  "Hamburgers or soup?" "The red or the orange crayon?"

Sometimes she remembers why she's holding the crayon she selected.

Most of the time, though, she sits in her chair, watching television and napping. Unless Olga, the recreation therapist who cannot be refused, is on duty, she has no interest in joining the others for mask making or puzzle constructing or sing-alongs.  I hold onto the words she said when she was living alone in New Jersey: "I don't need to go out and see people.  I enjoy my own company and can amuse myself."  This is something which has remained constant as she has declined; she's rarely hungry for social interactions.

I left her in her electric chair, feet dancing to music in her dreams, and walked down the hall to her six-month-care-plan-review. Her medications were discussed, mostly so that I could be sure that insurance was paying only for what she is using.  There was a little bit of education on the side. The generic Lasix will keep the swelling in her ankles under control, as the generic incontinence drug helps keep that liquid from escaping without advance warning. Her blood thinner reduces the risk of stroke. We've discontinued the mental acuity drug; there was no difference in her mentation when she cycled off it last winter so there was no reason to re-institute the regimen.  I did all these things without asking her.

She's said, time and again, that she raised me to be a good person, a person who loves her and cares for her, a person who makes thoughtful decisions.  She trusts me.  "If you say so," is her favorite response. And so, I say so.  Instead of talking around her while she's in the room, sitting like a potted plant, not participating even as she is the central topic of conversation, I've taken to excluding her from the conversations entirely.  I'm keeping her safe.  She doesn't need to know the details.

Except that this is not congruent with the picture I still hold in my head of the woman who raised me. She never let a detail go unexamined.  She wanted and needed to know what was happening and why. She could delegate during a meeting, but when it came to decisions regarding her own life she was front and center, considering, discarding and ultimately choosing a desired outcome.

Now, the outcome she desires is unobtainable.  The life she is living is exactly what she didn't want for her old age.  She'd not a burden to anyone in terms of taking more time or energy than is available, unless I don't consider the emotional energy expended.  Every thought of her is tinged with sadness. Every conversation about her starts or ends with "This is not what she wanted." And there is nothing that can be done.

She's healthy.  She's eating better, although she's moved on to the next step in her dementia - pocketing her food.  Like a squirrel, she masticates and then stores the goodies in her cheeks.  The staff says that it's not a problem with swallowing, it's a memory issue.  She forgets what to do with the chewed up foodstuffs so they sit in the corners of her mouth.  There's a simple fix; the staff asks her to smile widely before she leaves the table, and then reminds her to swallow what's still in her mouth.

I'm grossed out just typing it.

Are you wondering how she chews without any bottom teeth?  So did I.  Apparently, it's not an issue for her. I try to avoid thinking about how soft the foodstuffs must be in order to be swallowable. Instead, I'm concentrating on the fact that there are no floating dentures, cruising around in her mouth as she listens to me babble.  I'll consult with the dentist and make a decision about ordering new lower teeth for her.  The staff says that when residents haven't worn their dentures for a while the new plate feels like marbles in their mouths.... uncomfortable and removable marbles... and that a considerable amount of staff time is devoted to locating hidden dentures.

The notion of elderly miscreants stuffing their teeth between the mattress and the box spring made me smile.... until I realized that I had decided to have a toothless mother... and I hadn't consulted with G'ma before I made that decision.... and I know it's the right decision because my goal is No Unhappy Days and achy gums for the sake of cosmetics is serving my purposes and no one else's.

No one else cares.  The staff see her as vibrant and funny; pleasantly confused is her diagnosis and we all agreed that it's a delightful state of affairs in comparison to how awful it could be... and may well be... and there's no sense in fretting about it now.

I reminded myself that this was just a new iteration of the woman who used to be my Mommy.... and I fled from those thoughts as fast as my brain could take me because it's one of those problems that cannot be solved.  The only solution is unavailable to me. I cannot fix her brain.

So, I take care of her as best I can, putting her safety and happiness at the top of a very short list titled That Over Which I Have Control. I'll concentrate on how happy the family will be to have no clacking dentures at Thanksgiving dinner. I won't worrying about her appearance.  Those who will see her will be seeing with eyes colored by love and affection. Without a dental sound track, they'll be able to enjoy her presence, creating another memory for themselves, bringing a smile to the last remaining grandparent's face.

I think this is what silver linings and silk purses and lemonade out of lemons is all about.  It's not what you want.  It's the best that is out there.  You get what you need to get by, to make the best out of what's really not that bad a situation.

And you try not to cry.

8 comments:

  1. Dear a/b, This is a hard part, you the grown-up, unable to make reality match your projected hopes for your mother's Golden Years. I would say to remember all the good years you both had of her aging before this new chapter. I take care of the elderly, and I was commiserating with the husband of the bed confined wife. I said I didn't imagine this was what they had planned for their Golden Years. His reply: "We've had a pretty good run." So know how happy your mother was for many, many years, and that she still is happy--maybe not by your picture, but apparently, judging your descriptions, by her current picture. I know it makes you sad--how could it not?---but remember, she isn't sad. So glad she has a daughter who loves her and cares for her! So glad you carry her memories for her, and have many shared happy ones. Blessings.

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    1. Thanks, Berta <3 Your words soothe my soul, as always. It's exactly that disconnect which makes me sorrowful. I'm going to make a concerted effort to concentrate on the good memories and not wallow in the sadness. It helps to know that you're out there, reading and offering advice and love.
      a/b

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  2. I think you are going to have to put aside what you remember about your mom and just focus on now. It's hard to let go of the impressions we have of our parents. But now you are the parent taking care of her. I'm sure at times you just want to curl up into a ball and have her make things better. That's what she has always done. She's the one that's been there for you. I'm glad that you are looking at this from a different perspective. I know how difficult it is, but you need to do this for your own sanity. You are doing what's best for her and deep down she knows how much you love her and are doing what you need to do. I don't think you should ever question your actions. Everything you are doing is out of love for your mom.

    Sending massive hugs!


    Megan xxx

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    1. Megan, as always, you relieve the guilt and set me on a happier path. Thanks thanks thanks thanks thanks!
      a/b

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  3. Several years ago I sold my home in Holland, MI and moved two hours south to Coldwater Lake, MI to live with and care for my 2 "80 something" parents. We are at the very beginning of the process of decline that you so bravely (and accurately) describe above. My father 3 years older then Mother is in decline overdrive, Mum in 3rd gear but I find that daily I am shocked, befuddled or stunned by the unusual behavior, attitude or reaction of two people I have known and loved for over 50 years. They are changing so fast now that my ability to accept it is lagging seriously behind. How often I have wondered lately: "Who is this person in my Mum's body?!"

    But then something occurs and there they are...just like they always were. I know this is normal and it isn't going to stop until the day they move on from here. Really, deep down I am OK with that...i understand. Though it doesn't really matter if I do or don't understand and accept it because it is going to happen anyway.

    Thank you AB for your consistent openness and honesty about your Mom. It helps to know what others experiences are. And you know something? As difficult as this transition is and will be...I would not want to be anywhere else but right here with them. They are afraid of what is happening to them and familiarity and family bring comfort and consistency. If my presence helps even a little bit then I am more then willing to go the distance for them...God knows they have done it for me....

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    1. So true, thormoo, so true. All I can do is bring her love and hope there's not much fear or pain. Having all of you out there in the ether is so very valuable, too. It's a cushion on which I rest my weary head.
      <3
      a/b

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  4. My grandma had Alzheimer's and my aunt is currently enduring Pick's. I remember my grandmother pocketing the food and the part that came when that phase was done. My heart goes out to you, as these diseases are so evil the way they rob us of the person who was. Bless you for doing right by her and keeping her happy and safe as she lives out her life. Making the decisions for her when she can no longer make them is the most loving thing a daughter can do.

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    1. "these diseases are so evil" - well said, Rita! This is exactly what she did not want to happen, and we are powerless to alter the course. All I can do is hug and love and hope.... and read my comments to know that I am not alone <3
      a/b

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