more dementia adventures...

OCTOBER 27, 2012

more dementia adventures

This was really funny to ME but not to my mother in law. When we went to visit the other night, she kept asking us to get into bed “so we would be safe”. Kerry went out of the room for a minute to talk to one of the caregivers, and she said to me, crying… “get into bed for MY sake, please?” and when I said I wasn’t tired she yelled, “DO AS YOU ARE TOLD!!”

Kerry came in then, so I was spared having to crawl in bed. She then was yelling at both of us, “either get in bed right now, or leave! It’s dangerous here!” So we skeedaddled out of there. Sometimes it is easier to just leave than to figure out how to satisfy her.

Today, we were installing an alarm so they know when she gets up in the night. She’s been falling regularly, and refuses to ask for help when getting out of bed. Therefore we had to install an alarm. SHE was convinced we were moving in. So she was going around and around the halls and every time she passed her room she would peek in and tell me she was glad we were settling in well. She kept telling me she could find a big chair to sleep in somewhere so we could have the room to ourselves. When I told her we weren’t sleeping here, she was really sad. It breaks my heart to not be caring for her at home. But when I try to help her use the toilet, I am reminded that I just can’t do it. I felt the familiar twinge in my back that usually means several days of pain. Glad there’s a call button to make a caregiver come running.

A lady came up to me, and said, “can I step on you?”

Confused, I asked “Excuse me?”

She said, “what’s your name?”

“Linda,” I replied.

“Then you don’t think you can do that?” she asked.

“No, I don’t think I can.” I answered.

Another little conversation with a lady was, “do you have the cards in order?”

“I think so”, I replied.

“Good!” she said as she wheeled away.

Sometimes these little conversations with people there make me feel like I am in the Hundred Acre Wood, and sometimes like Alice in Wonderland. Today a man was walking down the hall carrying a toilet and dripping water everywhere. Turns out my mother in law isn’t the only one having toilet trouble. He was a repair guy but he said, “This toilet is playing Taps!” More dreamland feelings. LOL…. all of it makes me feel like dancing down the hall and joining in the insanity. Most of the time I don’t feel far from there!

And then there’s Rita. She wanders around with no expression, so you think there must be nobody home. She keeps walking into my mother in law’s apartment, goes straight into the bathroom and looks in the shower. One day she started trying on my mother in law’s shoes! Yet if you talk to her, she replies, and sounds relatively “here”. Her actions just don’t match what she says. She goes into everyone’s room most days, they say. So does my mother in law, so we can’t complain she’s here! We just say, “hi, Rita!” and guide her out. Just point her in another direction, and she just walks in a line until she gets to a wall, then turns and goes another direction. Kind of like those vacuum cleaners that you just turn on and they go all over. Some people make sense here, others do not. Some know who they are, some do not. Some know WHERE they are… and others don’t. My mother in law is aware she’s in Stockton, and not happy about that. She’s aware of who she is, and mostly aware of who WE are, although sometimes Kerry is her father, or her brother… it confuses her that people are taking care of HER instead of HER taking care of them. She’s the nurse, after all. Decades of nursing mentality have survived. She wants to care for everyone, direct the caregivers in the best methods, suggest what foods are the best. She would run the place if she could. For a long time, she was convinced we were running a care facility. She kept telling us how it would be better. Today she said, “The place is going downhill since Kerry left.”

The last woman I talked to said she didn’t know why she was here, and that she had nobody, and nothing. She was crying. I comforted her the best I could, but she was not to be comforted.

Dementia robs you…. eventually, of everything. 😦

BUT…….. I love this poem I found, written by a man with dementia.

To Know Myself as God Knows Me

Oh God, I am losing myself to this disease

Slowly, but surely dementia eats away at me

Little by little it takes away what makes me who I am

But You, merciful God, continue to know me fully

Dementia can’t change who I am in Your eyes

To You I am the sum of all I have been and all I will be

And so You celebrate all of me and all of my life

You wrap all of who I am in love, acceptance, and forgiveness

So God, I ask You to help me step outside my moments of loss and grief

Help me know myself as You know me

Help me see that nothing of me is lost to You

Help me celebrate with You

Help me embrace your gifts of love, acceptance, and forgiveness

And help me know that it doesn’t matter how devastating dementia is

You will always and forever know me fully and love me deeply

For this I give you thanks and praise, God of my life.

http://brucebane.wordpress.com/2011/04/13/to-know-myself-as-god-knows-me/

I remember a story that Joni Eareckson Tada told about Corrie ten Boom…. the main point was that despite Corrie’s strokes and dementia, she never forgot the Lord.

And so that’s what I would pray, for all those at Villa Marche, all those that suffer from this horrible disease/condition…. that the Lord would be real and known even when they are past the point of knowing much else…

and from the old hymn…. O Sacred Head, now Wounded…

What language shall I borrow to thank Thee, dearest friend,

For this Thy dying sorrow, Thy pity without end?

O make me Thine forever, and should I fainting be,

Lord, let me never, never outlive my love to Thee.