Saturday, March 31

sinking...




...just a bit...

We try really hard to keep life hopeful and happy day to day here...pretty and comfortable surroundings, light and sunshine, interesting books and movies to fill the sometimes hard-to-fill hours. But there are days like today when I just feel so tired with trying so hard to balance the darkness that is always present with Alzheimer's. Our darkness isn't as dark as what others have to bear, but it is dark enough to me....one night of Mom not waking up and me watching her (through the monitor) wander her room opening doors and curtains, sit on the bed staring into space, constantly fluttering her hands and fingers...until I determine that she is not going to go back to sleep on her own and go and reassure her and tuck her back into bed. The bed that she often doesn't recognize as her bed or even that it is a bed at all. One night like that might help. The same for our home that I work so hard to make safe and beautiful for her, but that she doesn't recognize as hers. Tho' she does comment on its prettiness sometimes...all the while she wishes "they" would paint the fences and get rid of the piles of mulch and lumber. 

The first time Mom used the term "they" and we realized that she didn't understand anymore that she lived with us and exactly how it all works, it was gut-wrenching...like the time Mom referenced me as "she". We have sort-of become used to the "they", but these past few days it jars again.

When the nights aren't broken with watching and sadness, the weirdness of the waking hours are easier to bear cheerfully. I guess it has been a few weeks now without an unbroken night. And there might be the fact that I am trying to get through these days without the comfort food that I have turned to over the past few years to soothe the little, daily disturbing things...and the evening glass of wine. I have read many Alz. caregiving memoirs and it is rather common to "let yourself go" during the years that you are spending so much thought and energy on someone else. But that sets up another layer of  negativity for me, so I will go on in my way, trying not to succumb too often to the cake or the darkness. 

It is past time for me to wake Mom up. So I will pull up the bootstraps of my mind and get ready for the "morning" routine (it is past noon)...A glass of orange juice to entice her to sit up...lots of stroking and pulling her back up into a sitting position again and again for she is always reluctant to wake when it is actually time to...the whole dressing routine and the placing of her chair at breakfast where she will see the least amount of worrisome things...the grass in the hayfield sometimes looks like people or animals to her,  the tractor and the canoe and the mulch pile make her wonder alot and if she sees Pippin laying down she speculates about whether he is cold or uncomfortable, but if she can't see him she worries about where he is....It might be easier not to have her near the window, but I believe the sunlight is beneficial to her, and the activity of the birds that come to the feeder....so we continue the dance of dark and light, and are grateful that most days the light is the one leading.


10 comments:

sarah said...

I can't imagine how hard it all must be for you. I'm glad you're taking good care of yourself. Not sleeping must be the worst, it can disturb so much in the body and mind. At least you have the certainty that you are doing the best for your beloved mother. Your selflessness astonishes me - I can't say it inspires me, because I could never hope to be so good.

Lesley Austin said...

Sarah...your words are so kind and understanding. But I don't think it's really selflessness. I don't think it would be so hard if I was selfless. Taking care of Mom myself is so kindred to all the choices I made with caring for my sons...with the weirdness and grief all mixed up in it.

Today has been pretty good so far. I immersed Mom and I in domestic tasks and they were bright and simple moments in our day. When we sat down to watch some tv after our tasks (tho' I had a basket of laundry to fold) the screen from the English mystery I watched last night was on the tv (Inspector Morse-"Death in Jericho"). My mom turned to me with her eyes big and in a worried tone asked "what is that about?". I quickly turned to the tv guide (which can also be a minefield) and distracted her with some prattling conversation and she went on to happily enjoy some girls college basketball (she used to play in high school). So that is the tiring bit...the constant editing. But I am rewarded with her general peacefulness...and so much more.

melissa said...

Blogger hiccuped and my comment seems to have whooshed into never-neverland.

I just wanted to say 'bless your heart', said sincerely and to give you a hug of sorts. Having to take care of children AND a parent is so exhausting, and it's wise of you to say so. To admit the hardness of what you're going through is a very good thing.

Hope you find some respite this weekend...and that your family and possibly a friend hears you without you having to spell it out.

Take care.

Cathy said...

I appreciate how you say "pull up the bootstraps of your mind" because sometimes it is sheer will to do the next thing. Sometimes I even think of it as duty, which goes an extra mile with the daily tasks too.

Like you I know the importance of keeping my mind fixed on truth and not what others may say I need. So I take a piece of cake sometimes, while at others times I deny myself...same as always.

Dori said...

Oh, Lesley.... My heart just aches to be closer, to be able to help in some way other than what little can be done from afar. You do a lot of digging deep and pulling up the bootstraps of your mind. Should my turn come, I can only hope to do as well.

Did I tell you, when I have a restless night here in Wash., I think of how your night might be, and hope my restless night take the restlessness from yours. If only it could work that way. {hug}

Lissa said...

Oh, Lesley. My heart is so full for you, reading this. I've been reading the letters of Elizabeth Lawrence, and you often come into my mind when she writes to Katharine White about caring for her mother...she does not give details, but Katharine discerns what is unsaid and writes back with much concern for what her friend must be going through.

I think too of Emily in my favorite Maud Hart Lovelace book, caring for her elderly grandfather, "mustering her wits in her own defense" as she copes with difficulties...your pulling up the bootstraps of your mind has such an Emily ring. How I love and admire you both.

Lesley Austin said...

Thank you to everyone for your warm concern and support. It means so much...

Lissa, I know that I will be using "mustering her wits in her own defense". How very necessary and true that is.

Karen Edmisten said...

Oh, Lesley, I can only imagine what these days and nights with your mother are like, and I admire you more than I can say. How very hard to cope, and yet how very full of love you are.

Lesley Austin said...

Thank you, Karen, for the lovely sympathy.

The last two nights have been rather peaceful, only one or two wakings and I've been working with a few things-leaving notes for her to find-and this has lessened her need for me the past few nights.

I will post about it soon!

Anonymous said...

Lesley,
I am so sorry to say I didn't even know you had a caregiving blog. I came here from your Wisteria link on those sweet little pillboxes. My heart welled and my eyes teared up reading this post. I know there are no words, but just please know I will think of you even more fondly and whisper little prayers for you and your sweet mom. What a dear, dear daughter you are. What a treasure you are to your mom. I just have to hope that our lives here on this earth are only the beginning, and that once we are all gone to higher realms, our relationships will be perfected and without blemish, and your love and devotion to your mom during this time will reap a deep understanding and love and thankfulness between the two of you forever.

Jeanne