The Lefse event at the Nursing Home

While at CrossFit yesterday morning, one of the young ladies I work out with told me that there was 'Lefse Making' at the home where my MIL is at, was I going to come?
Since it was snowing and blowing and most of my 'to do' list was complete, I said I'd go.

I woke Lenise up when I got to her room and sat with her while she slowly gained her senses.
She said she was tired, I replied that they were doing a Lefse making 'thing' down in the cafeteria and that I'd come special, just to spend the afternoon with her.

Success! I got her out of bed, slippers and glasses put on... and off we went. We wheeled into the cafeteria as the Lefse Ladies were starting to roll out the dough.

Lefse dough consists of pounds and pounds of potatoes peeled and cooked then run through a ricer. Hmm, easier to provide a link than it is to explain it since I am not a baking person.

Sons of Norway: Lefse Making

I parked Lenise so that she could see the ladies rolling out the dough and using the stick to transfer it to the grill thing. Pretty soon we had a table of four residents all trying to make conversation.

I passed out coffee to the ladies and tried to field questions.

Mary told everyone and anyone who was there that she liked the Packers and that she was from Green Bay and she was of German descent. Mabel was worried that she was at the wrong table and didn't know us. It seemed to bother her a lot.
Lorraine announced that she didn't recognize anyone and that was okay because she was pretty sure that we were okay.
Lenise told the girls that she lived in an apartment in town in Viroqua. Then said she had an apartment in Readstown. Minutes later she told them she had a room at the Home just like them.

I recently finished a very good book Where Memories Go: Why Dementia Changes Everything by Sally Magnusson.
It is an incredible account of travelling through the world of her mom's dementia with a daughter and her family. I've been reading and doing a bit of research. It really has helped me understand and not fear visiting the home or being uncomfortable around those who do have different stages of dementia.

Mable [not her real name] was really quite put out at not being at her normal cafeteria table. I'd be busy listening to the others talk and I'd watch her out of the corner of my eye. She kept rearranging an empty spot on the table over and over. She reached over and picked up a napkin and asked me to read it to her.
I asked her to help me with it.
Mabel said, "It is signed Olga [something...I couldn't make out what she said]." She handed me the napkin and I studied it for a moment and said, "Yes it does!"
She nodded and put it back on the table.

Lorraine pulled on my arm and I squatted next to her. She asked who I was and I told her that I was Lenise's daughter in law.
Lorraine looked at me and asked, "Do you know my mother?"
I answered no.
She said, "My mother said she'd be here. I don't see her, will you watch for her?"
I said sure...

Mabel reached into the center of the table for a little white pumpkin decoration and picked it up. She oohed and ahhed over it for a moment and then announced it was a cupcake.
She shoved it to her mouth and tried to bite it. The other ladies told her 'No!' while I gently pried it from her and set it out of her reach.
"But I want that donut!" she said.

The table conversation was in fits and starts. Lenise would ask Mabel a question and Mabel would stare off into the distance. Lorraine would say something and Lenise would answer. Mary would jump in with her mantra regarding the Green Bay Packers.
Mabel suddenly pointed to an empty spot on the table and asked, "Do you see that? It is so bright and pretty!"
Her hands lifted and her eyes followed something up to the cafeteria ceiling.
"Look look," she kept saying, "it is so pretty! Do you see it?"

See here is where a bit of understanding comes into play. Arguing with Mabel wouldn't have done anyone any good. Lorraine looked up and then asked me if I'd seen her mother again.
Mary gazed off into the distance.
Lenise looked up and then said to Mabel, "Did you spill spaghetti on the floor?"

However Mabel was entranced by her vision of something beautiful and her face was absolutely at peace and full of joy.

Lorraine asked me for some more coffee. Mabel asked me who I was. Mary left. And so it went with snippets of conversation around watching the ladies make Lefse.

I finally asked Lenise if she'd like to go back to her room. I had a few things to get done in town and needed to get home for chores and supper. As far as I was concerned, Lenise had a very good day. She was pretty sharp. We tooled down the hallway and when I got to the end she pointed the way to her room.

I stopped to turn her into the doorway and she pointed to her name and room number.
"See!" she said, "there is my name and number. They keep moving my room and putting my name on so many doors!"
No use in correcting her.
I ask where she'd like to Park and she points.
"Is this the same room that you got me from?" she asks.
"Yes ma'am," I reply, "there is your afghan!" I reach out and straighten it out.
"Don't bother 'they' left it like that when they moved me," she says.

I think this may be her way of being a little upset when she knows I'm going to leave. I'm not sure. I sit on her bed and take her hand then tell her I'll come again.
Small consolation, I think to myself. I hug her and gather my coat and things.

I look over my shoulder as I leave her room and she is staring at the wall her hands in her lap.

I feel my heart squeezed a bit and... then turn to go brave the cold snowy world and return home to take care of Rich.

Molly the nurse stopped me outside in the hallway and asked if I 'get a break' from CareGiving. I smile and shake my head.

"You know how families can be," I reply, "I'm not bitter or angry. Just sad that the family is losing such precious moments like those I get to have."

Slippage

Brain Disease.
Doctors call it Alzheimers or Dementia.
It is a brain disease.

The brain is a functional organ that is the hard drive for our bodies.
When the brain misfires it begins to have Bad Sectors and cannot be rebooted or reset. Portions of memory files are misplaced or become corrupt and lost in in the recycle bin to be lost forever. The brain slips a bit like a vinyl record with a bad scratch. It is not fixable. Files keep slipping away and taking memories with them.
The brain eventually forgets how to tell the rest of the body how to function.  The 'hard drive' begins to have terrible issues as time moves on, more functions are lost.

Well at least this is how I have come to understand Dementia. I decided that since I have to live with that ugly word, I would make it less ugly and call it Brain Slippage.
I've had to explain my MIL's condition more than once to a relative. The best thing I could come up with has been the analogy to the computer's hard drive and system of files.

Once the computer's hard drive is so full of gaps and holes, the rest of the functions no longer work.

I just finished reading The Last Ocean, A Journey Through Memory and Forgetting by Nicci Gerrard.

If you have an aging partner or parent, it is a worthy read. We can never truly understand how memories and the brain function, but the author show us how compassion and caring are so important. How we should not let those with Slippage become unseen and forgotten people.

Are we truly made up of our memories? What happens when those memories are no longer? Are we then something or someone else? What defines us?

These are questions the author asks us.

When I visit with my MIL. I see slippage. What was reality a year ago or even just months ago is no longer. She has lost 10 years of memories which is fine because she is perfectly happy recalling her house on the ridge and not the apartment she moved into.
Will she recall her great grandchildren? Probably as they are something that may be more important in her file system.
She knows me and sometimes I am younger in her mind and sometimes I am in the present.

Does it matter to her? No, she is perfectly happy or so she thinks. She asked me to show her a photo of the building she used to live in. She said someone told her she used to live there. I brought it up on my phone and showed it to her.
She shook her head.

Nope. She couldn't picture it at all. Couldn't recall what the apartment looked like either.
But the house on the ridge, do you recall that?

Oh yes!
I asked if it bothered her at all not recalling the apartment. And she looked me straight in the eye and asked me:

Why would it?

Indeed.
Don't try to convince her that she HAS to remember. That is such a big mistake with those that have slippage. Don't force what they cannot recall.

Trying to make her recall things that have drifted away is only an irritant. It does nothing to make her day happier.
Bingo makes her happy.
Painting class makes her happy.
Meals make her happy.

Visits from loved ones make her whole world. It brightens the day by day routine of eat, sleep, nap, get wheeled somewhere, and look out a window or stare at a wall.

I don't mind it when she falls asleep while I am visiting. I sometimes hold her hand just to be with her. Sometimes I wait for a while and then give her a hug and leave.
She loves hugs.

One day her memory of me may slip into the recycle bin and be lost.

Another lunch date

I sat down with MIL after greeting the 'gang' as I started to think of them. It is funny how I get concerned if one of them doesn't show up. In a nursing home, life tends to feel a bit tenuous.

MIL started out by saying "Hello! Where have you been?" I replied I had been there yesterday and she said "No." Then she looked around and said, "Oh, you were?"
No matter, that is how things progress for her. One day blends into another seamlessly.
On Sunday's visit she'd told me that she was rather upset with the staff and I'd asked her why.

Her explanation was rather intriguing.
"Well," she said glancing sideways, "you have to be a ..." she paused, "...a woman or a MAN to get anything around here! I mean nobody pays me any attention! If I have to go to the bathroom they tell me to use the bathroom in my room! Imagine that! I have to go to my room!"

I nodded, "So you have to be a man or a woman to get the staff's attention." I couldn't help but ask.
"YES, and if I want to go to a meal, they just tell me to go ahead! Nobody gives me a push or takes me there! I want to go home. You take me now."

I wanted to venture a guess that the staff was following doctor's orders... trying to see if she was capable to do things on her own, not being mean. But I just kept my mouth shut. As soon as it was time for her to go to lunch, I asked if she wanted to go.
She immediately said yes, and that I could push her. As I wheeled her to lunch she commented that I didn't drive as fast as most of the people who pushed her.

Monday lunch.
The usual characters.
Lisa was asleep at her end of the table. She kept waking up and dozing off. Then a staff member came in and took her Glucose Reading [away from the table]. Lisa woke up then and started to glance around. She left her lunch and backed up her wheel chair to move over towards John.
John was watching her and trying to negotiate spaghetti and meatballs with his one hand.
She kept inching closer, murmuring to John.

I watched and wondered again about Nursing Home romances. A staff member came up and asked Lisa to leave John alone and go eat her meal please.
My MIL was busy trying to cut up her meatballs. When another staff member put a glass of water, chocolate milk, and coffee in front of her she protested loudly.

"Take that water away! I don't drink water!"
The staff member smiled and said, "Honey, I have to give it to you, it is required."
MIL snorted and shoved the glass with the back of her hand and spilled water all over the table.

Joan perked up from her near slumber at that. "Oh, honey! Drink your water! It is so good for you!"
MIL pushed the glass again and made a face. She turned to me and said, "See? I don't get any attention!"
My usual method is to divert and change the subject when she gets a bit upset and it works pretty well.

I noted that MIL had her bright green jacket that she was sitting on. I inquired if it had been cold. MIL picked up the chocolate pudding and started to scoop it up.
"Yes, it was cold this morning! I had my housecoat on."

She stopped what she was doing and leaned towards me. I think she meant to whisper what she said next, but she didn't. She was actually quite loud. "I peed on it so they had to take it to the laundry and the nice girl got me this jacket out of the closet."
She smiled as if the peeing incident was something quite special and turned her attention back to the chocolate pudding.

I drank some of my bottled water.

Lisa spoke up from the end of the table.
"You know," she said, "my Brother In Law was afraid that I was going to steal his brother from him."

Most of us turned to Lisa.
"I don't know why he thought that," she continued, "he was my husband."

Joan shrugged, MIL ate her pudding, John opened his mouth in a silent laugh, and Lisa returned to eating, only to fall asleep at her spot.

Note: Visiting a nursing home where a loved one is, can and is rewarding. You have to have a grasp of what how to handle your loved one's illnesses are and learn how to deal with things like such as dementia. 
My visits are always rewarding. My MIL is always happy to see me and asks for hugs which I give freely. The other residents thank me for coming to see them at their noon meal.
Most importantly, I listen and don't judge. 
Interestingly enough, each table group is like a small social group. I am often reminded of my high school cafeteria, where all of the cliques sat together and chatted.
I actually look forward to each time I visit and have found that lunch time is the best time. Everyone is more alert.
If you have someone you love in a home. Go visit.
It will be rewarding to the both of you.

One flew over the Cuckoo's Nest..

Anyone remember that movie or the title?

That is what lunch with MIL is like. 5 people at the lunch table getting their bibs on. I help anyone who asks if they'd like help. Conversations are funny. One lady ~ Joan is a literal blabber mouth. She will talk up a storm! She was rather down today, apparently her daughter doesn't come visit often. 

My MIL's provider visited her today. Asked how she was. MIL said "so-so", the doctor asked to listen to her lungs as she had been treated for pneumonia two weeks ago. The doc asked her if her cough got better. MIL looked at her and said "what cough? I wasn't sick!" MIL dove into her orange slices as the doc listened to her lungs. She told MIL she still had a bit of crackle and pop in the lower left lob of her lung. MIL said "do not," and devoured her noodles. 

The doctor asked how was her OT? MIL said "don't have that. I had more of that when I was in my apartment." Doc explained that the OT was going to change her leg wraps more because she was leaking and had wounds and the diuretics to remove the fluid were no longer working as they should.

MIL ignored her and slurped her Shasta then dove into her biscuit. Finally the doctor asked MIL who I was and I identified myself as her daughter in law. The others at the table watched and listened but mostly just were curious as to who the lady with the stethoscope was. 

Joan went on about something about her hands and her daughter and how she didn't want to eat. She laughed. John who sits across from her spent about 4 minutes recapturing the orange slices off his bib with his one good hand. When he did his face came alive with joy! He got the slices into his mouth and 'mouthed' out the word "WOW!"

Then he tried to creep over to Lisa at the end of the table who likes to close her eyes to put food in her mouth. Lisa saw that and turned herself towards him saying, "I'm fat! I have to drink my water before soda! HI John!" She and he crept towards each other. John's wheel chair was locked but he is a big guy and kept lurching it. Lisa and John got hold of each other to .. heck, I don't know what they intended to do...! But I signaled an aide and we got them sorted before one or the other flipped out of their chairs. Lisa proclaimed it was "Good! Nice day. I don't have to eat today, I'm not coming tomorrow." This as she was eating.

Um. The lady next to her Karen... spoke softly then said "Don't be crazy you have to come tomorrow."

"No I don't."

"Yes I do."

John on the other side was making faces. Joan decided she'd had enough and pushed through Karen's backside to leave. Wheelchair bumper car. More aides and we got that sorted.

MIL asked me who that lady was that had just seen her. I said, "Your doctor."

MIL: "Oh no, she isn't. I think my doctor is in Viroqua. And why do they keep changing my room? Every time I leave they move my room!"

I asked if the lunchroom mob would like me to visit tomorrow as their were no activities due to it being 4th of July. I said we could do a wheelchair parade. 

John mimed clapping with one hand. Lisa said she didn't have to come tomorrow...only on Thursdays. Joan was scooting down the hall and Karen said, "Sure but it isn't 4th of July, it is December but it is too hot."

Of course, that made perfect sense.

I got MIL part of the way to her room. I am not allowed to push her if she doesn't have her leg rests in. MIL was upset I had to leave to get Rich. I found someone to let them know she said she'd need help to find her room again. I turned around to leave and ran into John who tried to high five me.

I think MIL's floor is for dementia patients. Now let me say that some days we have the greatest sanest conversations, on other days I am not sure what is going on. 

I really must say that I do love visiting with these folks. One day Lisa took my hand and thanked me for having the courage to come and sit with them as often as I did. To tell you the truth, I kinda dig them. 

So Charlie will have a long walk early in the day, a bath and then I will decorate him with r/w/b spangly bows on his harness and we will go visitin'. It is supposed to be wretched and stormy so why not?

Just as long as they don't keep me.

Sometimes I just sits and thinks....

*Sometimes I just sits and thinks...sometimes I just sits...* ~ A.A. Milne from Winnie the Pooh.

I spent a long time sitting alongside the creek yesterday while my friends were exploring after a weekend of deer hunting.

I was just thinking.
Thinking about some good things that have happened to me. CrossFit is still fun and I enjoy it. I'm part of a camera club now. There will be a Field Trip to the Rotary Lights with mentors helping everyone with photography. I can always learn new things.

Rich. The newer Rich is pretty interesting. Since his depression treatments, he is either severely grumpy, thus I dub him Grumpy Gus...or very happy. I don't like Grumpy Gus times. He gets snarky and testy over every little thing.
It is hard to get him out of the house.
His knee still hurts. However it didn't seem to bother him when he was out standing for a few hours while watching for deer. But he claims it is too cold to go outside. He won't help with chores. It is too cold or it may bother his knee.

The happy guy laughs and gives me reason to smile. I like that guy. The silent guy watches TV shows on Netflix ... binge watches hours at a time... at a high volume. Then gets angry when he has finished all the seasons of a show he likes.

I accidentally started a show that we had previously watched. I said something about it being a repeat. He adamantly said it wasn't. I went in the kitchen and painted crafty stuff and wore headphones to listen to Pandora. Why not? If he can watch 6 seasons over, that is less time I have to spend searching for him.

I tossed another rock into the icy water of the creek and watched a puff of sand float towards PeeWee's.

I looked up at the Teddy Bear on the desk and thought of Winnie the Pooh and his adventures.

I pulled out the plastic ornaments from my camera bag. I'd had an idea. The Creek Bears, holidays, color, rocks, snow...and water.

I love these bears. They were lost in a flood and recovered. They have earned the right to be 'special'. I was thinking of a Christmas Card or something like that.

I took about 10 shots to find one I like and I found a flaw with this one too. How did I not see the green stuff on Percy's face? Oh well. Now I have a reason to try this again.

How about all of the bears on the desk? I can do different looks for these shots. Warmer,...colder...black and white. No sun...no shadows.

I left the ornaments on the desk with the bears looking downstream.

I went and sat on a dry flat rock and just listened to the creek for a while.
My friends were still walking above me on the hillside.

I preferred the quiet in the creek.
I mulled over the word dementia and how people can't see the brain 'damage' so it is hard for them to figure out why a person they love changes their behavior.

Perhaps if I painted a huge scar over Rich's forehead it would help me and others understand why things don't always make sense. My mother in law needs one too.

I tossed another rock in the creek. I could hear my friends coming down the hillside trail.

What was in my future? I had to think about it.

"What about it Teddy Bears?"

They didn't answer.

The Diagnosis

A month ago we went to the VA hospital in Madison for a Neuro-psychology exam. This is a brain function test of executive functions, thinking, making decisions, planning, understanding, language, perception, and ...well, you get the idea.

It was a two hour test that we did on the 14th of last month. I should say, a two hour test that Rich did last month.
I learned in Physical Therapy-Speech last year that issues a person has pre stroke generally become worse post stroke or as the PT gal said, the issues would be greater in general.

We sat down in the room and I mentally thought I was prepared for hearing the two doctors conclusions.
I wasn't.

Cognitive Disorder, specifically Vascular Dementia -- the doctors were quick to say that Dementia means Brain Changes-- the stigma of hearing "You have Dementia" is about as horrid as hearing the word "Cancer".  Perhaps even much worse. Dementia is like saying: You are going to lose your mind.

We have gone down the Cancer Road already so I didn't think anything would actually shock me.

Rich has not just had one stroke. Last year's stroke was just a big bang compared to all the others he has had over the years. In other words, he has had a lot of insidious brain damage over the years.

I had thought perhaps that Rich had Vascular Dementia, but until the words were clearly spoken to me in that room, there was a chance that it wouldn't be that.

I looked over at my husband and wondered how he was taking the news. Hard to tell as he was just listening and watching. The doctors were very good to look us both directly in the eye.

Then they asked a few direct questions. "Val, you are not working correct?" I smiled and said that was correct, I had to quit last year to stay home and take care of Rich.
"We have a treatment plan and some things we believe will be helpful but it is a big commitment."

The question behind the question. 'Will you go running from this room screaming your head off and ditch your husband? Or are you willing to put in time and extreme effort for his therapy and care?'

I replied to them that I was there for the long haul. After all, I'd driven to the UW 5 days a week for over 6 weeks to take Rich to radiation treatments and tried to work on the weekends.

They went over the details of getting appointments with PT, OT, and seeing a Medical Psychologist too. I inquired if that would be that same as the gent we saw during cancer treatments. He was quite helpful. They thought they'd try to schedule us back with him since we had a history already of seeing him during the cancer treatments.

Social workers, OT coming to the house for inspection, testing Rich for safety, OT doing driving tests with Rich...arranging Respite Care.

Discussions of driving, not driving.

And then the bombshell.

"Do you have your POA set up?" the one doctor asks of us.
"Yes," I answer, "we did that quite a while ago."
"Financial and Medical?"
I nodded.
Rich nodded.

They turned and looked at Rich. "We may ask your wife to be your Medical Agent as we are not sure you can make your own health decisions. We will consider Financial POA also."

I could see that Rich was a bit shocked. So I piped up.
"Honey, if they do that, nothing really changes. Right now we are doing all of this together anyway. We sit and do the bills together, we go to appointments together right?"
He nodded. "I could do the checkbook," he said, "but my tremors are so bad. I can't write so Val does it."

There it was, the same thing we went through with his mother. Losing your independence officially. It didn't matter that I've already been doing most of what a Guardian or an Agent for Health/Finances would be doing already. But the 'threat' of having that taken away was downright frightening for him.

The discussion went on to talk about how Speech Therapy would help, meeting with the Med/Psych doctor would help, PT, OT, Social Workers, setting things up.

The goal was to maintain Rich on a plateau provided there wasn't another brain incident or other health incidents.

In one year they would test him again to see if he was able to maintain or...
Well.
Let's just say it out loud. This sort of brain damage doesn't reverse itself.

I'm not asking for sympathy or writing this for shock value.
I may continue writing about this on my other blog called The Long Road.
The Long Road is where I addressed our travels through Cancer.

I hope that I am prepared to travel down this new fork in the road.