sweet burden

 

Long time no words....

It is hard to write when it is mostly struggle. You can see that we have sweet and beautiful times...thank goodness, we do.

But there has been more burden than sweetness these days. It is partly because Mom is losing ground, physically and mentally. My heart aches for her when I watch her try to move her uncooperative body as she tries to dress herself or take a step after sitting awhile. My spirit falls when I discover the results of her uncooperative brain when she has tried and failed to remember where to go to the bathroom.

There is lots of adjusting going on here. Both the adjusting of expectations and what we now perceive as "normal" and the adjusting of routines and coping arrangements. We now have a bathrooming schedule and are in the midst of trying out new technologies to be able to keep an even better eye on Mom and stop some situations before they begin.

It is all rather sad and tiring....for Mom and for us.

How do I get through? Especially as all my lovely plans for regular respite fell through soon after I last wrote of them? I am writing this from the screened porch with birdsong and faraway thunder nourishing my ears...and white sheets hanging on the line and the green apples peeking through the green leaves on the trees in the kitchen garden nourishing my eyes...and the buzzard flying so high and peaceful amongst the blue and white of the sky nourishing my soul...a glass of an iced herbal infusion nourishes my cells.

That is the sweetness.

The other part of the burden is being 53 years old and instead of an having an empty nest, finding myself with a nest filled with an adult I am completely responsible for who doesn't even know anymore that I am her daughter. Yes, she still knows my name and she is affectionate....but she doesn't understand our connection any longer.

And I am at a time in my life when I long for more freedom, not less.  

You know, I could go on and on...I have so much to explain and that I want people to understand. But the reality is, I've had to get up and check the monitor five times while I've been writing this (as its range doesn't extend to the porch). The last time I found Mom up and wandering her room and had to put her back to bed (the bed she doesn't recognize as a bed)...so I am going to end sooner rather than later.

And instead of writing I will try to setup the new camera that my brother researched and found and that we hope will allow me to be on the porch whenever I can be....and perhaps even the garden. So the next time a long-awaited rainstorm comes by, I can welcome it, reclining on the porch sofa with the monitor withing hand's reach....taking care of both myself and my mom.

And I will continue counting the days until my other brother comes to relieve us for a spell at the end of August.

And I will hope that the glimmer of the possibility of regular respite that was shown me last week will be fanned into a proper glowing sureness in September.

And you may be sure that I will go on knowing how good I have it, in so many ways, as I think of a friend who is dealing with losing parts of her precious body to cancer. I can truthfully say I would rather have the burden I do than that one....and I will continue to nourish myself as I am able...and speak my truth...and remember to breathe....and cry when I need to....and keep learning and loving and hanging on.

xo

dotty and duncan

More than a year ago I first discovered Bob DeMarco's Alzheimer's Reading Room. I've been visiting ever since and have learned so very much through what Bob has shared with us there...especially from his journey as a caregiver for his mom Dotty. 

For the past almost-three weeks, I have been honored and humbled to read what Bob shared about his mom leaving this life. Morning and night, I would check for a new post, hoping to find out how they were doing...thinking of them each time I passed my dressing-table altar...and many other times besides.

When we returned from an out-of-town trip a few weeks ago, we found one of our elderly goats (one of a pair of brothers, the last of dear line of hooved creatures) at what looked like death's door. It wasn't unexpected, but we gave him delicate treats and herbs and tender care and he rallied for awhile, but a few days ago he took a turn for the worse and I knew this was the end of his time with us, sweet Duncan. 

He spent the last few days of his life in his familiar paddock, resting on a thick bed of golden straw, with cloths to keep the flies off and frequent visits from us with water to pour upon his tongue and green leaves to nibble. Wednesday evening when my husband returned from a rehearsal and could be in the house in case Mom woke up, I took myself to the barn with a flashlight and something to lay down on and spent an hour or so with Duncan.

The flashlight was turned off, I was stretched out next to Duncan listening to this breathing and stroking his furry cheek. His brother Mackay was laying in the straw nearby and I listened to Mackay's stomachs gurgle...and Duncan's mostly peaceful breathing...and I watched the canopy of stars beyond the overhanging roof and the fireflies shining out now and then over the paddock and hayfields. I watched planes fly over and thought of the variety of people sitting in all those seats and all they were holding in their minds and hearts...I thought of Bob and Dotty in their  house in Florida and hoped they were having moments of mostly peace, as well. When Duncan called out now and then and feebly moved his legs, I stroked his legs and murmured endearments and comforting words and was grateful that the episodes quickly passed...and I thought some more about Dotty and Bob...and also about my mom and myself and how I hope that we will be able to be together and as peaceful as possible at home when it is her time to take leave...

More stroking and listening and watching and meditating, until I left Duncan with a kiss...peacefully sleeping. A tiny bit of water and a few leaves the next morning before I had to go into town, and another kiss...then a phone call in the afternoon from my husband to let me know that Duncan had gone. When I came home, I found that my husband had added Duncan's name to those of Bob and Dotty that I had spelled out a few weeks ago, near the beginning of the last part of their journey together. And then this morning I found this when I checked Bob's blog.

Sweet Dotty. Sweet Duncan....I don't want anyone to think I am being disrespectful or in any way comparing Dorothy Olive DeMarco's life or passing with our dear goat's...not at all. But they have been woven together in my days this last while...woven together with the love and the stars and the tending and the fireflies and the caring and the peace and the Life within and around it all.

respite

I read this last night in my current novel...

"Respite.

If happiness was now beyond his reach, he could at least know respite, and respite, with its lifelong rhythm, can in the awareness of it be called by the name of peace.

"But there must be no before or after," said Sally.

He looked at her with polite astonishment, and she laughed.

"Please forgive me!" she said. "I was thinking of moments of respite. One can't get the most out of them unless one treats them as the next thing: as though it were the only thing. I mean, if you think about the toothache that has just stopped, it so easily becomes the toothache that is going to begin again, and all your peace is lost."

Except for a few hours on Mothers Day when part of our extended family was gathered together for a few hours, I have had ten days of respite from caregiving. The first few days with Mom in the care of a dear lady whom she loves and trusts in town (who used to manage the respite care that Mom attends now and then) and the last several with Mom in the care of one of my brothers at her beach house. The first few days found my husband and I in Asheville NC steeping ourselves in the vibrant, warm atmosphere and celebrating our 25th wedding anniversary. And the last several days have been spent at home with me straying no further than the edges of the waving hayfields. Heaven.

At the beginning of our respite, I found myself now and then counting....seven more nights without the glowing monitor by my bedside...six more days when I can flit in and out of the house and do and go wherever I want without a thought...five more nights of staying in bed the entire night and early morning, without a single trip down the hall and no long minutes watching the monitor in the wee hours...four more days of working in the garden for as long as I like without the monitor beeping in and out of range constantly or needing to worry whether Mom will be happy for another minute or two as she sits nearby...three more days with little routine and long hours of quiet and no need to speak or encourage or cajole or instruct...and then I read those words last night and stopped thinking about before or after this wonderful, generous period of respite. 

Peace.

Tomorrow I will take up my sweet burden again. And the respite will come around again, as well. And not just the week every three months that my brothers aim to provide, but the every-other-week sleepover that we are trying to make a habit with the same dear lady in town, and the Thursday afternoons at the respite at the church when I do my errands and enjoy a few town hours on my own, and the moments I try to weave into each day...listening to the mockingbird in the sweet night over the gentle hum of the monitor, the ten minutes of weeding before Mom wakes up in the morning, the time with my novel and a cup of something while Mom naps, the moments when we are side by side together and she is content...

shower day

In the many years that Mom lived on her own when she was well, an afternoon or early evening shower was her joy. If she had been out that day, she couldn't wait to get home and take her warm, warm shower and change into a muumuu. It is very different now, as a fear of showers and baths is a very common part of the Alz./dementia experience. 

I help Mom with her shower once a week. When she spent a few months in assisted-living before coming to us, the aides there said that once-a-week was all they required, so I have held to that, too. No need to put her through what she perceives as an ordeal more often than necessary.

Friday is shower day for her. I find myself thinking earlier in the week, "Oh good, five days until Shower Day."  On Wednesday I will think "Phew, two more days until Shower Day." And on Thursdays it is "Ok, tomorrow is the Day, may it go well."

It is Friday afternoon now. This late morning, when Mom woke up, I gave her a hearty breakfast of two scrambled eggs and a piece of sprouted wheat toast. She ate most of it, with lots of prodding and encouragement. I ran outside while she was eating and fed the hens outside her window so she could see the "little women", as I like to call them, who give us our eggs. Mom's usual breakfast is a bowl of Honey O's with sliced bananas and almonds, but I like her to have lots of protein on Shower Day to give her strength. Like most things I do, I don't know if it actually makes a difference.

I don't tell her it's Shower Day until her breakfast is finished and we've done something pleasant. Today my husband looked through an old photo album with Mom while I hung out some wash in the sunshine and breezes (shoring up my own mental strength for the coming hour or so). When I came inside, Mom wanted to show me a few photos of our sons when they were tiny and herself when she was with them. After exclaiming over the photos, I took her hand and matter-of-fact-ly told her it was time to brush teeth and have her shower. 

The next words out of Mom's mouth, after a few long moments of silence were "I don't feel well." It is so much like handling a child sometimes. I told her I was sorry she didn't feel well, but that I would help her with her shower anyway and that it would take but a few minutes. And that is the truth, she is only five minutes or so in the shower, and I make sure that the rest of the process is as warm and pleasant as possible.

On a scale of 1-5, I would say this Shower Day was a 4. She told me she wasn't well a few more times and also that she "didn't like this at all"...which is a usual comment. To make her feel safer and happier I helped her off with her clothes more than I usually do...I don't want her to forget how to do it herself, which she will if I take it over sooner than necessary, and honestly, I am grateful for even the little bit of exercise she gets pulling and tugging to get dressed and undressed...but I know it is a challenge for her. She surprised me by thanking me for the help today, which showed me what I knew already, that she would welcome the help more often. Little blows...believing I am doing the best thing for her when I know she sometimes thinks I am being unhelpful. But she is so generous with her thanks throughout each day and I am very fortunate in that, I know.

She was more confused in the shower than usual today. For a few months we have been using simple instruction cards that I made to help her through the process. Since she is hard of hearing, it has really helped for me to show her the signs while I stand outside the shower curtain...

"Rinse your hair, I will give you shampoo"

"Scrub the shampoo in all over your scalp"

"Rinse the shampoo out of your hair"

"Wash all over with soap, focusing on private parts"

Sometimes she laughs at the last one, more often she makes a face or rolls her eyes. Today, she needed a lot of help with the shampoo part and she made it clear she didn't want to wash herself. In the past, she hasn't wanted me to wash her, especially the "private parts", but today she told me she would like me to...and I told her I would be happy to do so. It took just a few seconds and I ended with soaping up her back, which she liked. Then it was time to bundle her up in towels, a few short steps to the cosy chair where I rub lotion all over her, and trim her chin hairs and floss her teeth. Then its into a fresh pair of pajamas...one of our Shower Day treats, so she won't have to go through the tedious process of dressing and undressing again that day, nor will I. Then on to the sunny sitting room where I blow-dry her beautiful hair. Then nap-time.

The moments when I can totally pamper her and answer her needs and desires, my heart opens up and I am glad. Then come the moments, like when I was blow-drying her hair today and thinking about how its white/silver color is so beautiful...then thinking about when she was my age and it was salt-and-pepper...then, inevitably, thinking about how wonderful it would be if she could still revel in her long, hot showers and blow-dry her own hair and not be afraid when she had to change clothes. Then the tears start and I blink them back and try to shut my heart enough to stop those sorts of thoughts from entering in too often.

And I think about how I need to keep putting aside the dread and fear that so often crop up in these days...the dread that a shower day will go really badly...the fear that I won't be able to find the right thing to say or do to comfort her and ease her own fears. This whole fear thing deserves a whole post...truly it does.

But Mom is napping again, after she woke up and I sent her back to bed with reassurances that there was nothing else she needed to be doing right now...and I am going to get out in the sunshine for bit, with monitor nearby and store up some fear-banishing sunshine and moments with the earth and the weeds...

P.S. Mom has been sleeping better the last several nights, with the last two nights with no waking at all...how restful...