Random Observations

The pattern the last few days, from my perspective, seems to be: Mom rises, has her pills and juice and nibbles on some breakfast. Dozes in chair most of the morning. Has lunch. Dozes some more. We try and get her to participate in little activities (a walk, some exercises, yesterday we took her for a little drive in the car), then more dozing, then at four she takes her pill, then she becomes agitated and confused for a while. This is when I usually go home.

March 28, 2011

Dad has been amazing. We still need to work on creative food ideas. Somebody needs to write a recipe book for people who are caregivers of people with A.D. Don't look at me, I have a hard enough time coming up with ideas for my own meals.

When Mom gets agitated (which she was very much yesterday, she was depressed and snappy), I believe it boils down to this: she's pissed that she can't communicate or do anything, and she's pissed that she is suffering from this disease.

And I don't blame her one bit.

Somewhere Outside Of France

Despite our excitement over the prospect of professional help coming to the house with the Hospice agency, as well as Mom bouncing back a little bit from the over-medication incident, let's face it - she's deep into this disease and it's only getting worse.

As Dad reported in his comment on my post from yesterday, Mom rose early today and went out to the living room for juice and pills, but refused food, except for one or two bites of an egg. Soon after that, she wanted to go back to bed, and that's where she still was when I arrived a little after eleven in the morning. She called out, "Who is that?" when I entered the house, and once I took off my boots and coat and hat and entered the bedroom, she babbled quite a bit. She mentioned something about feeling like she needed to get back home, and finally I just went along with it, asking, "Well, where are you then?" And she replied that she was somewhere outside of France.

After a while, we got her up to the chair, but it wasn't long before she wanted to be on the couch. She would not eat, but she did drink Ensure and water. There were many trips to the bathroom for peeing through out the time I was there, and a little bit of walking around. She did want to have the beautiful bouquet of flowers my sister brought up moved to the dinning room table. She seemed intent on cleaning off the marble table that is next to her regular chair today. Usually it's cluttered with tissues and napkins, toothpicks and water glasses.

She was very cranky and verbally combative today. She complained a lot about her right arm. She continued to say things that made no sense, only to her. We try our best to understand what her true meanings are. It's difficult.

Dad was depressed today. The snow was falling all morning into the afternoon, switching over to a light freezing rain for the last hour or two. We couldn't go anywhere. He's worried about getting enough sleep tonight (and he didn't sleep very well last night), because he's got the appointment with the elder care lawyer tomorrow in the city an hour away. I'm a little worried about being alone with her for the three or four hours he will be away. It's possible we could have someone from the agency come up to assist me with her tomorrow, but it's not confirmed yet. I can probably handle it alone, but you never know where the disease may make her turn next.

And she's not eating. We weighed her during one of the bathroom breaks, and the scale stuck at one hundred pounds. Perhaps the coming week will feel more hopeful, but all in all, this disease blows, and it  hurts like hell to see such a beautiful, intelligent woman become so helpless and pathetic.

Exhausting

We've survived the big snow storm.. two days of snow, really. Four inches or so on Tuesday, then the big fourteen inches or so yesterday. I spent some time with Mom yesterday. She spent most of the day on the couch, as usual. Seeing the snow swirling outside of the window made her anxious. Many times she repeated questions. "Is he going out?" "When will he come back?" And I'd have to reply that he wasn't going anywhere, that he is home.

Dad told me today that he broke down and gave Mom one of the prescription mild sedatives last night. He just could not get her to settle down. Then she retired very early, before eight, and though he tries to keep her up a little later, in a way, I'm sure, it's a relief when she goes to bed, because she is so demanding and tiring to be around.

This morning, we awoke early to begin the big snow clean up. Our angel of a neighbor had done the bulk of our driveways last night, which made our work much lighter, though still, there was a lot. We walked over next door, and while I cleared around the porches and walkways, he skimmed off the top of their driveway with the big scoop. Dad had taken off early to get money, pills and food. When I was done, I went inside to wait with Mom for Maria, who was coming today instead of yesterday during the storm. Once she arrived, I said goodbye and went back to my house to do more snow clearing, then I cleaned up myself and gathered up my redeemable bottles and got my grocery list together.

After running my errands, I went back to sit with Mom for a few hours. They were both napping in front of the television when I got there. Poor Dad. He's got to be exhausted.

Mom asked me if I could read to her from our book, so after I moved the washed load of towels and sheets to the dryer, I settled her into her chair and I began to read. Within ten minutes, she asked me to stop.

I resisted, and continued to read a little more. But then she asked me to stop again. So, we got up, walked around a little bit. Then she wanted to lay on the couch. So, I settled her into the couch, and sat quietly in another chair looking at a book. Five minutes later, she called for me.

"I'm here, Mom."

This was when she said something like,

"I just feel like I need to get going."

"Going where, Mom?"

"Home. I need to get home."

Instead of trying to correct her this time, I just said, "Oh, okay."

So, I went to her, she had half risen from the couch, and she said,

"It's getting dark out."

It was two o'clock in the afternoon, and the sun was shining brightly.

Then she laid back down, and I tucked her in again.

"Read to me?"

So, I took up from the book again, speaking as softly as I could. We got through a few pages, when she wanted to get up again. She repeated the comment about feeling like she needed to get home. She began to arise again, so I offered to take her downstairs so we could see what Dad was doing (though I suspected, correctly, that he was trying to nap on the little bed in the basement.) We waddled down the stairs, and she complained about how cold it was down there. Then she wanted to lie down with Dad on the little bed.. so I helped her settle into the bed next to Dad, and threw a blanket over them. I went back upstairs.

Not even eight or ten minutes later, I heard her panting as she came crawling back up the stairs. I suggested maybe she was resting too much, maybe she'd like to walk around a little. We walked around the table, through the kitchen, into the bathroom, through their bedroom, back around the table. All the while, she is lurching, panting, with a distant look in her eyes.

Finally, she wanted back to the couch again, this time switching directions and facing me while I sat in a chair. I picked up the book again and I was able to read uninterrupted for a good thirty-five to forty minutes. She had her eyes closed the whole time, but I knew she was listening. Many times, I have to explain again to her who was who in the story. Finally, I stopped, getting tired, and remembering that I needed to retrieve and fold the laundry out of the dryer. She wanted to help, so I told her to stay there and I would bring it upstairs and we would fold together. Even this is a big, confusing deal to her, but we did it.

Dad came up again. I tried turning on the television again, but then Dad suggested we turn it off. Dad laid down on her couch, I suggested to Mom that she tuck him in, like he's always doing for her. She got a little snippy about that, but she did it. Then she sat in her chair, and Dad and I tried to engage her in a little light conversation. Mom kept bowing her head, keeping her eyes closed.

By the time I left, Mom was back on the couch. I said my goodbyes, and I asked her to "be good."

"I will."

Like that means anything. Sigh. Oh well. At least I can leave, Dad is twenty-four seven. It is exhausting. Tomorrow is another day.

This Whole Thing Sucks

Yesterday, a frigid morning, I got over to stay with Mom a little after ten, so that Dad could go to the church to do some treasury work, get his blood test at the hospital, and do a little shopping on the way back. Mom was sitting with her book, reading away. I had wanted to try and start cleaning up some of the Christmas decor, and I got started on that right away.

The phone rang, and it was one of Dad's dearest former colleagues, who is aware of the situation. I spoke with him for a minute to explain Dad was out, then he asked to speak with Mom. She agreed, and stood with the phone in her shaking hands and spoke with him for about another minute or two. She was shaking like a leaf. I could see this was not a good day for Mom.

Soon, she asked if I would read aloud to her from the book. She was very impatient and seemed only to want to get back to the story. Like it is the only thing her damaged mind could follow. I read to her for awhile, then took a break. She went back to reading herself, trying in vain to read aloud to me a little while I quickly zipped around and tried to do more work.

I made her a simple lunch of organic chicken soup and grapes and a couple of chips and a small glass of Ensure. I had us sit at the dinning room table so that she wouldn't spill the soup on her lap. She complained a lot about this and that, and rushed through eating. She finds no joy in eating anymore. It's distressing. I don't know how Dad stays so composed day after day.

I cleaned up the dishes after lunch and then went back to reading to her aloud. Dad rang to let us know where he was at, and I continued to read aloud until he came home, sometime around two in the afternoon. While he distracted her with the groceries he brought home, I was able to zip upstairs and grab the box for the little porcelain lighted Christmas tree and as quickly as I could, I disassembled it and packed it up, not before she wandered over and moaned a little about the whole thing. Luckily for me, Dad was there to tell her it was alright and diffuse the event.

She is so worried and sad all the time. I kind of dread hanging out with her this morning, while Dad goes off to his annual physical with Dr. N. However, it's my job and if it weren't for me, who else? I can't stop thinking about her misery. Perhaps when this book she is reading is finished, she'll go back to sleeping or watching television.. but even television seems to be too confusing for her. It's way too frigid out to convince her to go outside for a walk. She's only really happy when Dad is in her view.

This sucks. And that's just me. Imagine how much it sucks for her?

Episode and ER

What a difference a day can make.

I stopped in after their lunch today, around twelve thirty p.m., just to check in and to let them know I was running down town for a hot minute to do some banking and gas up the Jeep. Mom was watching a movie, Dad was down on the computer. Mom seemed her usual drowsy self. I told them I'd be back in an hour or two, and Mom said she couldn't wait for us to get back to "The Secret Garden."

I got back over there in a little over an hour, and soon I took up where I left off in the book from the day before. I read aloud steady to her for about three or four chapters. At the end of the last chapter, I showed her the illustration in the book describing the events in the story. It was a picture of little Mary walking into a dark, forbidden room which contained her sickly cousin, who she was not told about. I ended the chapter which was filled with conversation between the two. Not once in the story, though, was the word "cousin" ever written, nor did Mom and I discuss it after I closed up the book for a rest.

It was ten of three in the afternoon, and she said she wanted to lie down on the couch. I settled her in, and I offered to turn on the television very quietly to help her relax, and she agreed to that. Dad came up and looked in on us. A little conversation ensued, nothing important, then Mom got agitated for no reason. She then begged me to read to her some more from the book.

"Okay," I said, "I'll read one more chapter then."

Dad wandered off again, I shut off the television, and I started up on the new chapter. It went on more about the little sickly boy, Colin, who had had a sheltered, sad life. Within a few paragraphs, without warning, Mom started calling out. I ignored her at first. It seemed as if she was just getting into the story and saying things aloud to the characters. But then it got weird. She started saying things that didn't make sense. I read a little more, but she didn't stop, and when I looked up at her, I saw that she was shaking uncontrollably, her face filled with fear, her eyes closed. She tried to talk, not really to me, just out in the air, but nothing she said made sense. She couldn't even say words.

I quickly put the book down and sat next to her and tried to comfort her, but nothing I said or did helped. I ran downstairs and got Dad.

Together we observed her ranting and panic, her fear and trembling. At one point, Dad mentioned later, she uttered something about "a cousin." Was it related to the story in her mind? I don't know. However, we were failing at calming her down, so Dad decided to call their primary doctor. He got through to the doctor's aid, described the symptoms, and even I was put on the phone with her to give my side of the story. Mom was babbling incoherently and shaking all the while. It was heart wrenching.

When the doctor's aid got back to us after speaking with their doctor, we were told to take Mom into our local emergency room to have her checked out. At one point during the episode, Mom was able to get out "why is this happening, what is happening to me?" so, surprisingly, she did not put up too much of a fuss when we gently told her we were all going to the hospital. There was still a part of her that wanted to understand as much as us.

Was it a stroke? Or a urinary tract infection? Medication side effects? Or simply agitation caused by the disease?

I helped get them off in their car, and then I ran next door and filled in my partner, grabbed my purse and jumped in the Jeep and followed them down to the local hospital. Mom was admitted, and first she was agreeable. As the time went by, however, she became more and more agitated, disorientated and down right ornery. Her agitation peaked during and after her head CT. It as awful hearing Mom screaming out and swearing while the two nurses where in the CT room with her.. their was nothing Dad or I could do to help calm her down.

Her EKG was normal, her blood and urine samples were clear, the head CT showed nothing out of the ordinary, barring the dementia / Alzheimer results. While we waited for results back in the room, Mom was just awful - begging to go, pulling at her wires, screaming aloud, trying to get out the bed. Finally, we got her to calm down, both of us rubbing her and soothing her in anyway that we could.

Luckily, the team at the ER knew we had to get her out of their ASAP (I sure felt bad for the poor patient behind the curtain on the other side of our room!), and as all her stuff checked out, the doctor said the best thing was to just get her home to decrease her agitation. I helped pull off her stickies, the nurse pulled out her I.V., and I got her dressed again. She was wobbly and confused, but she seemed to calm down a lot when I told her we were heading home.

We left after two hours, and I stopped back at their house before I went home to make sure she got settled alright. We plopped her down in her chair and got her a glass of wine. She was able to communicate to us again, with a few exceptions. She remembered what had happened, but could not explain to us why.

Her filters are shutting down, therefor the Id is in full swing. Before I left, she took my hand and wanted to kiss it. Instead, she suckled my knuckles. "Eh, Mom, that's weird! Did you mean to kiss my hand?" She said, "I can't." I showed her how to pucker her lips for a kiss, and she tried to mimic me, but again, she lowered her mouth on to my knuckles and suckled them like a little baby.

She was trying to show me love and appreciation, after all the trauma. I'll take it.

The Secret Garden

Friday, Maria was able to come and bathe Mom. She dressed her in a green outfit and attached the little Christmas tree pin to her sweater that I had pulled out a few days earlier and left on the dresser.

I don't remember a lot of details about Friday or Saturday, but Mom did do a lot of movie watching and napping.. Saturday night they had dinner at her sister's house. I remember that she was pretty antsy about getting ready to go over there early Saturday afternoon. She kept wanting to sleep, then get ready, then sleep.. She seemed pretty needy that afternoon.. I finally stalled some time by offering to help her put on lipstick and comb her hair and re-pin the Christmas tree pin to her sweater.

Sunday morning I got up early to stay with her while Dad attended choir rehearsal, the church service and caroling with his choir in the afternoon. Mom and I chilled in the morning, with the television and magazines, then I made her a small turkey and cheese sandwich, with a few chips and some tangerine slices. I begged her to finish the last two bites of the second quarter of the sandwich, and she claimed she "didn't like the cheese." I was feeling a bit ornery myself and I argued with her "oh, yes you do." "No I don't!" "Yes you do, now eat it!" "I DON'T LIKE THE CHEESE and I DON'T WANT TO EAT IT!"

Ugh. I messed up there. She got frumpy and we both got teary-eyed. I let it go, returned her lunch tray to the kitchen and we made up by admitting to each other that this is hard for both of us. Then I asked her what could we do to get us "out of this funk."

"Read to me?"

So, I found a book on her shelf, a beautiful copy of "The Secret Garden," by Frances Hodgson Burnett. Perfect. On Friday or Saturday, I think it was, I had read to her from a published local book Dad picked up. In the back of the book is a sermon that Mom had written and read at her church on Easter Sunday in April of 2006. It's called "The Inner Garden," and it talks about the relationship between gardens and your inner life... it also goes into the clues and steps that led her towards her journey of earning a landscape design certificate from Radcliff College and how much she loved her work as a landscape designer. She references "The Secret Garden" story.  It is all very beautiful and so very much a light on her passions in her life.

So, we began the lovely tale of the little abandoned Mary Lennox and her discovery of the secret garden at the giant manor on the moors in England. We are both loving it.

Finally, her friend from church arrived to stay with Mom until Dad got home so that I could go to my afternoon gig.

Except I ended up staying home. I was too emotionally drained, crying when I got home in the loving arms of my partner. He encouraged me to stay home if that's what would make me feel better, and I'm glad I did. I got more comfort from my kitties after he left, got something to eat, then walked back over a couple of hours later. Dad was home and Mom was still happily chatting away with their friend, who had a ball staying with Mom, reading to her and having tea. She offered to help in anyway, anytime she could. It was really nice.

Relieved, I went back home to my kitties and a few sappy Christmas movies, flopped on the couch and tried to emotionally regroup.

Monday afternoon I zipped over around two in the afternoon, after finally getting a chance to do a little Christmas present and food shopping. I shut the television off and read to her for almost two hours from
"The Secret Garden." Dad was able to nap, take a short walk, bring in firewood and do some computer stuff. Mom and I are really enjoying the book, and I can't wait to get back to it when I go over later today.

Paranoia

Thankfully, Mom was less depressed yesterday (Monday.)

She was in her usual chair with the television on when I got there at about ten thirty in the morning. First, I suggested we take a little walk around the half melted driveway, and we did that for a good twenty minutes, the sun shining and no breeze to speak of.

After Dad went out to run his errands, I asked her again if she would like me to read to her. I had asked her on Sunday, but she refused. Yesterday, however, she agreed to it, so I shut off the television, she slumped down in the chair with her eyes closed, and I took up part way through the Edith Wharton book she had given up on weeks ago.

The writing in the book is filled with fancy words and long sentences and many parenthesis and asides, but eventually, I got into a nice rhythm with my reading aloud, and occasionally Mom would blurt out the correct pronunciation or stop me to ask for a clarification on who was who. This was one of the calmest I have seen her in a while.. she closed her eyes (and even said to me, "excuse me for closing my eyes," and I replied that that was quite alright with me) and seemed to follow the stories. We even had a laugh or two, but she did say that it hurts her to laugh.

Dad returned home with a few things from the store, and I helped them prepare lunch. I went back home for a couple of hours, thinking I could get some things done for myself, but in reality, too spent to do much but laze about on the internet. Monday's are always a sleepy day for me.

Around two thirty in the afternoon, I went back over so Dad could take a walk. Mom asked if I could read to her some more (yeah!), so after I prepared a small pot of tea and gave her half a cookie, we settled in for some more reading aloud. She was once again enjoying herself when the phone rang, and I got up to answer it.

She overheard me take the message and the woman's name. I wasn't sure who it was, but Mom was convinced it was somebody calling about "Mom sitting," a very touchy subject at this point. Earlier in the day, Dad had spoken on the phone with a woman he was referred to by our neighbor who could possibly do some respite for Dad and me, and Mom overheard this and became very upset by the whole thing, yelling angrily and no doubt, howling.

After I took the message from the woman, I tried my best to distract her from the call, but she was clearly agitated again. I went back to reading for another twenty minutes or so until Dad came home. We told him that the woman called and would be calling back, and he said that she was a woman from an expensive respite house in a fancy town an hour away from here... Mom's sister had slipped a piece of paper with the info on it to Dad at Thanksgiving, so he followed up on it, only to recognize that it was not the right place for them.

However, this did not stop the woman from pushing for another "sale," and Dad, being polite, took her second phone call and went down stairs to speak with her. I wanted Mom to stay upstairs, but she insisted that she go down to listen in. Paranoia is at it's peak here. I walked down with her and asked her to be quite so Dad could politely tell the woman it wasn't right for them, and I managed to distract her for a few minutes in the downstairs bedroom ("Oh, look how nice and neat and clean your eldest son left the bedroom before he went home!" "Mom, where did you get this dresser, anyway?" "Where did this little mirror come from?" and she'd answer me, however...)

She went back out to where he was speaking on the phone at his desk and yelled out a few nasty things, and eventually he hung up and asked her not to do that... then he told her he needed to do something...

She went back upstairs, distraught, and I made Dad hush for a minute and wait, then we both came up. I gathered Mom in my arms, I had Dad come over and we hugged, the three of us, as I explained to Mom, again, that we are on her side, we are trying to take care of her, we won't do anything to hurt her, we won't do anything that she doesn't want.

Of course, I had to lie a little. We don't know what will happen in the future, and at the rate her mind and body are failing, we just can't say for sure what we will have to do. But at that moment, in the three way hug, and the reassurances from Dad and me, her agony and anxiety were again temporarily eased.

We three sat for a few more minutes, then we made a big salad together for their dinner, and finally I went home to my ever understanding boyfriend and my big glass of merlot.

Later that night, Dad called and asked if I would be willing to escort Mom to a ladies group dinner she was invited to this coming Friday night. The ladies know what's up, and she had a ball having a luncheon with them at one of their homes a few weeks ago.. despite the drive over being a nightmare for Dad. Once she was in the presence of her friends, however, she did have fun.

Naturally, I agreed to do it, as long as Mom would still be up for it by Friday. One can never know. Flexibility...  I over heard Mom speaking in the background as Dad and I made the plans, and she seemed happy that I agreed to go with her.

Sigh. Which leads me to this morning, when I just went over to pick up their trash and recycling to make a dump run. Dad was in the basement at his computer, Mom was on the couch looking at a New Yorker magazine. This morning, we all lost power on our road for about two hours... Luckily, they had already had coffee and breakfast when it went off, and perhaps this was why Mom was still "reading" even though the electricity was back on.

She seems bound by worry today. It's Tuesday, and it's been six days since she's bathed. She refuses to change her clothes all week, and she dreads bath day with "Marena" (Maria), but she did admit that she does feel better after her bath and fresh clothes. She looks so frail, her hair is disheveled and needs to be trimmed and washed, she smells. And I can't do anything about it.  She won't let me.

I am heading back over there shortly. I am going to try and read to her some more. Every word I write, every word I read, gets us closer to the end of this god awful, sad, sad story.

Sad Sunday

We got through the Thanksgiving holiday fairly well. Mom was pretty well engaged and despite the usual confusion about time and schedules, I was happy to see her hang back and let the rest of us handle the duties. She ate a good portion of the mid-day meal, and also ate much of the meals my sister prepared for them while she was there. The afternoon gathering over at Mom's sister's house, just down the road, was very active and busy, but Mom was comfortable enough there to have a nice time. She was especially excited when some of us pulled out some instruments and played a few songs..  she had a ball singing along, and it was very special to see that.

Thanksgiving 2010

Earlier in the week, she had told my sister that she'd like to go to church on Sunday, so my sister was willing to stay an extra day in order to do that.. but by Saturday, Mom was so fried she changed her mind. Sister and big brother left for home on Saturday morning, not before washing and drying all the sheets and towels and leaving a list of left overs in the fridge for Dad. When I visited Saturday afternoon, Mom seemed somewhat content, but tired and, no doubt, relieved that the house was quite again. Same for Dad.

Sunday morning, I got over there only fifteen minutes after Dad left for church, about nine thirty a.m. She was slumped in her chair, with the television on, and napping with her chin on a pillow. She remarked that "I was early," and I could tell she was depressed, right off the bat.

It turned out to be a very depressing morning for me, too.

The whole morning she dozed off, with a frown on her face, her eyes closed, breathing heavy. I offered an idea for an activity, maybe I could help her write a few Christmas cards? No.

She complained that her back was hurting again. I offered her a Tylenol, but she wanted to wait until later.

I peeled and cut up a grapefruit, and she nibbled on a few pieces.

I reminded her it was her sister's birthday, and I managed to reach her by phone so that Mom could say happy birthday to her. "I love you!" she yelled in her distorted speaking voice.

I did the breakfast dishes, and noted two uneaten halves of cold toast on the cutting board. When Dad called around ten fifteen, he told me she didn't eat much for breakfast. Mom agreed to take a Tylenol for her back pain after Dad said it was okay. He told me to give her some more Ensure, as she only had juice with her small breakfast.

We walked around the dining room table ten times, five rounds in each direction, but I couldn't engage in her in any other exercises or stretches. She went back to her fitful dozing. She was angry that Dad went to church. There is a part of her that understands why he goes, but another part of her that feels like she is abandoned by him when he does.

Her mind is tired, her body is tired, she is caving in.

She ate a whole bowl of white bean and kale soup left over from my sister's batch, and a few crackers and grapes for lunch. A handful of trail mix with chocolate bits for dessert. After lunch, she opted for the couch.

I stayed until Dad came home, a little after one p.m.

I am hoping today she will feel better. I am hoping that yesterday was just a bad day.

She can no longer read or write, play piano or cook, change her clothes. Her sense of time is completely distorted. She does not want pity, and yet she craves comfort from this constant confusion. Her mind no longer belongs to her anymore, it is on it's own poisoned mission.

I just wish I could take away her pain and discomfort, but how does one soothe the brain?

Fickle

I was thinking to myself, I wonder if Mom would like to play Scrabble? Of course, it would be casual and slow and non-competitive. I was doubtful, but she has seemed bored lately. I went over in the morning, but did not bring my Scrabble board.. instead, I ran down to the toy chest a grabbed a 500 piece jigsaw puzzle and a tube with a black and white lined drawing for coloring in with colored pencils.

Well, that didn't go over well at all. She wigged out and refused to even look. No problem, I said, I just thought you might like to try something different. I realize it's too hard, but I thought maybe, something, just an activity to focus on.

I realize focus is hard now though.

After she calmed down, Dad made a comment about the length of her fingernails. It's been brought up before and she's always resisted and claimed she liked them long. But yesterday? She marched right into her bathroom and got some nail clippers and a nail file. She let me clip her nails and together we filed them.
I made a big deal about being "her manicurist," and she seemed to get a little chuckle out of that. I asked her if she might allow Maria to give her "a pedicure" the next day (today), after her bath, and she agreed to that. I'm going over shortly and we will see if that really happens!

Later in the day, the minister from their church offered to drive over to their house to pick up some paperwork so that Dad wouldn't have to drive all the way to the church to drop them off. He has been excused from tonight's monthly board meeting, which is a big relief to Mom (and a night off for me!)

Well, we agreed to have me meet the minister, and Mom called when he arrived around three fifteen in the afternoon. Well, if you didn't know anything about Mom, you would have never known she was afflicted with this disease! Lucid and chatty..

You just never know with this condition. Fickle.

I am heading over there shortly to spend a good chunk of the day with her while Dad goes to a doctors appointment in the big city. I am bringing a photo album from the late sixties / early seventies. I plan on trying to get in some housecleaning around Dad's desk area. It's a big dust bowl down there!

Last Few Days

The last few days have been fairly steady, so I haven't felt the need to write too much.

However, just when you want to believe maybe things are better, maybe the medication is working.. little episodes like what just happened a little while ago remind you that this disease takes no prisoners, makes no excuses, spares no one.

Thursday, Friday and Saturday mostly seemed alright. Mom seems to complain less about her back pain (though sometimes it'll come back.. perhaps from all the sitting.. ) We try to get her up and moving, but her attention span is so short. She always wants to go back and sit down.. though she'll go to do that and start to read, but get distracted and want to get up. It's hard.

I've started a new tea time ritual, which she likes. Usually around three p.m. Just before the sun starts to go down and "sundowners" sneaks in. Saturday afternoon, I went over there around two- thirty, specifically to try and get Mom to change her clothes before she and Dad went up to Auntie's for dinner. We managed to do that without too much fuss.. though, it's never easy. She felt better though, and picked out a fresh, matching bandana to go with her top. They spent less than two hours over there, and the report was that it went well. I suggested they ask Auntie if they could bring home any leftovers they couldn't finish, and so they did and were able to supplement that for their Sunday night dinner.

Sunday morning, I got over there a little before ten a.m., and we spent the first hour together quietly reading. Eventually, she got hungry, so I asked her what she wanted to eat.. She finally agreed to let me make her a grilled cheese sandwich. She ate half of that, plus some chips and a cut up apple and a glass of V8 juice. I bolted out of there at a little after one p.m. to get ready for my gig.

At my gig later that day, I got disheartened again when I had a conversation with the new drummer we've been using for the last four weeks. We all knew that he had just lost his wife only two months ago.. I thought it was cancer, but when I told him about what I was going through with Mom, he told me that was how his wife died. We both shed some tears as he shared a few of the sad details.. and he warned me, gently, that it was only going to get worse. Which I know, but to hear it from him, still painfully fresh in his soul.. so sad. In his wife's case, it was the disease that made her weak, and she, too, suffered from compression fractures, as well as urinary tract infections.. because she wasn't wiping properly.. I guess this is common. Something Dad and I need to be on watch for. The physical health conditions sped up and compressed the AD. Sigh. That night, after I got home, I resolved to be even more pro-active with Mom and with relief for Dad..

Though Monday comes around and as I've said before, I'm always a bit off on Monday..  Luckily, Dad called in the morning to let me know he and Mom were going down to the town hall to vote. Not long after that, he called again to say that the town hall was closed on Monday, and though Mom had said earlier she would go with him down town to food shop, she changed her mind and didn't want to go. But she was fine with being alone while he was gone, so I was able to shower and unload gear and get my own shopping done.

When I went over at two-thirty, things were calm. She was reading, then she suggested tea, so we three sat and had tea (no television on.) While I was at the market earlier, I ran into their choir director, and she naturally was very concerned and eventually asked if she could come visit Mom. I said, that might be nice, and to call Dad. Well, by the time I got over there, she had called Dad but Mom flat out refused a visit. Sigh.

Later, after tea and a short nap on the couch for Mom, when the subject of a visit from church people came up again, she got really upset, so much that she got up out of her chair and started to leave.. she walked outside (I was holding her hand the whole time), and she yelled at Dad about this and that. (One thing she said was actually pretty funny.. "Well, I've had to listen to you fart and poop for all these years so...!") She doesn't want to be patronized. She doesn't want to be "an experiment." She just wants to be left alone. She is just happy to have Dad and me tend to her.

We calmed her down enough to get her back in her chair, and she said she was hungry, so Dad went to get her a cracker and cheese. I was getting ready to leave and was in the kitchen and asked Dad about his plans for the week... and sure enough, this upset her some more.. even when she's in the other room, she listens and gets upset. Dad and I need to just email our plans, I guess.

So, you just don't know. This disease is ugly and sad and we can't blame Mom for her behaviors. We just need to remain calm and smile (whenever she gets upset, I say, okay now, let's not be mad, think happy thoughts, let's smile.. anything to get the sad frown and furrowed brows off her face.)

We discussed Meals On Wheels again tonight, and the option of more help from the church folks. Mom is dead set against a lot of stuff, but we might just have to do it anyway. Dad's trying his best, and I don't want him to get anymore burnt out than he is.

Tuesday Afternoon

Got next door around one ten today. Dad needed to get to a test and a meeting, home about five. The temp was mild, a little over sixty, and the sun dominated over a light cover of white clouds. Mom was in front of the television. Dad said goodbye and took off, and shortly after that, Mom and I went out for a walk. Up the driveway, up the road and back down to the veggie garden out back. Though she seemed to enjoy being outside, even remarking when we passed her side flower garden that she "couldn't wait to get better so I can do some work in the garden," much too quickly she needed to get back inside..

October 27,  2010

Back in her the chair, I sat with her a minute and told her I'd like to do a little dusting, like I had mentioned yesterday. She agreed to that, and I shut off the television and she picked up her book. I spent about forty-five minutes dusting and vacuuming around the master bedroom, but I can't spend too much time doing stuff because she gets mildly distressed. So, I went back and sat with her awhile. 

I put on some water for tea a little before three, and we sat and had tea over a couple of HGTV programs. Then I asked if she would like to show me how to prepare the ground turkey into her famous turkey balls, and she agreed. I figured this would be a good way to distract her from the time without Dad. It was a struggle for her, but together we managed to put together a plate of prepped turkey balls. Then she got tired and went back to her chair, and I threw together a salad.. and tackled the pantry. Threw away a bunch of outdated foods, and cleaned and sorted a bit. When I looked out at Mom, she had her head bowed in her hand. When I came back out, I asked her if she was sad, but she said, no, she was just trying to visualize what the sounds where that I was making in the kitchen. It's hard for her brain to match the sounds to the images... It's all jumbled in her mind.

Dad called around four while we were prepping the meat, and he got back at five. Mom and I gave him a big hello and welcome home. I got the meal started, then left. 

Tomorrow will no doubt prove to be a tough day for Mom. Maria comes in the morning to help Mom bathe.. though Mom likes Maria, it's always stressful for her. I can't blame her. Just this afternoon, when I suggested she might want to change into a another clean shirt (from the big change incident two days ago), she instantly slipped into whiney mode and so I dropped that right away. No sense getting her all worked up, got to pick the battles.

Later tomorrow night, Dad is going to a concert.. tickets he purchased awhile ago before we realized Mom was so affected by this horrible disease. He'd like to go anyway, I'd like him to go, so I will stay with Mom, and she will not be happy. All I can do is sit with her, assure her, and try and distract her from her anxiety. 

We will see how it goes.

Monday Afternoon

Monday is always a draggy day for me, because I've been so busy on Saturday night and Sunday afternoon with my music. I sensed Dad probably wouldn't need me until later in the day, so I got cracking on my chores in the morning, unloading the equipment and doing the dishes, showering and dressing for my day. Around 11:30 a.m., Don answered the phone and it was Mom. She told him she was going down town with Dad to accompany him on his shopping, so I didn't need to go over until later. Great, I thought, I'll get a chance to run down town and do my shopping and errands, then I could go over in the afternoon and give Dad some time to do his thing.

So, I took off around noon, and didn't get back until a little before three. When I got back, Don told me Dad had called about half and hour earlier to say that they had to cut their trip short, because Mom just got too restless and wanted to go home. So, he would have to go back out so he could do his grocery shopping.

When I got over there about three p.m., Mom was clearly feeling some anxiety. Her face showed worry.. I held her hands and sat with her while Dad talked on the phone with the Dr. N.'s assistant about one his issues (vitamin thing) and about Mom's lessening back pain. He and I tried to make plans for tomorrow, and this was not easy with Mom's anxiety and questions. Once Dad left with a grocery list in hand, Mom asked if I would like to watch a program with her (the t.v. was off when I got there.) I agreed to that, being a little worn myself, so we moved over to the t.v. chair and then I asked her if she would like some tea. She liked that idea, so I went to the kitchen to heat up the water and prepare the teapot. I decided to empty the kitchen trash, and Mom offered to help by opening up the door to the garage. I feel like when ever she wants to do something, it's therapeutic to say yes (within reason.) So, she opened up the door, and this makes her feel useful.

We sat for a bit and had tea. I told her a little about my gigs over the weekend, and we chatted lightly about the next few days plans.. though, you just can't go too much into anything.. it stresses her out too much. I told her I thought I'd like to do a little dusting around their bed tomorrow.

When Dad got back, we helped him unpack the groceries, then we went back to the living room while Dad did a little business at his computer. Around four p.m., I had Mom come into the kitchen and help prep dinner. She wanted to peel the yam, but it was too hard, so I had her peel and chop the garlic. She decided she wanted a little glass of wine.. then she wanted her radio program on. I thought this was great.. like old times. Of course, once the garlic was chopped, things got too much for her again, so she went back to her chair and her book while I helped Dad get their dinner of mashed yams, steamed summer squash and slow-sauteed hake fish going. Dad was very gracious with my cooking tips and ideas.

Tomorrow, Dad needs to go get his monthly blood test done, and he has set up a meeting with his minister. He was going to attend a political meeting being held in his church basement from 4:30-6:00 p.m. that evening, but he called me a little while ago and has decided to skip that, realizing that they'd probably want him to volunteer for more work. I assured him it's okay if he skips out on this, as much as it kills him, because he's done a lot over the years, and he deserves a break, especially considering what we are going through with caring for Mom.

Plus, this way, he'll be able to come home and have dinner with Mom. I hope to get Mom back in the kitchen tomorrow afternoon before he comes home so together we can prep their dinner meal.

Weather was overcast and drizzly all day. Her anxiety level was mild to moderate. I'm seeing a pattern here.

The Weekend

Saturday was another fairly calm day for Mom. I believe it was cool but sunny. We took a longer walk outside then the last two days. This time, when she pointed out a plant, it was "Goat's Whiskers" instead of "Goat's Beard." She ate fairly well. I had to leave early for a gig 2 hours away. Dad made a good supper with chicken tenders and veggies, he said it turned out well.

Sunday was a bit tricky. We all three agreed that I would come over at 9:30 a.m., leaving Mom alone for a half hour. Wouldn't you know it, I overslept on Sunday! Never happens. Woke up at 9:45! Ran downstairs, put on coffee, fed the cats and zipped over there, walking in the door just before 10 a.m. She hardly realized I was late, engrossed in a television show on HGTV. That was a relief (later she admitted she was confused if it was me or Maria coming over).. I settled in and casually mentioned that my friend was stopping by to say hello to me on her way back home to Boston, and that she wanted to come and say a quick hello to Mom. This casual news upset Mom quite a bit at first.. I had to gently calm her down and eventually she agreed to meet her.

The next battle came a little while later when I realized Mom was shaking and cold, despite the heat being jacked up, the heating pad at her back and a throw over her legs and torso. I suggested we change into clean clothes from head to toe.. oh boy, she did not like that idea one bit, and she bursted out in frustration. I remained calm and soothing, and though it was a battle and so painful to see her react that way, I managed to get her into completely new clothes, even fresh socks. It was not pretty though.. she fought me the whole way. It's unbelievable to witness this behavior, but it really is the symptoms of the disease. Heartbreaking.

I had her put on some deodorant and run a comb through her hair and she chose a fresh bandana that matched her fresh outfit, and sure enough, once settled back down in the chair, she felt better and warmer. I managed to rub some moisturizer on her dry feet and toes before we put on the fresh socks, and I also gently applied some moisturizer on her face and hands.

We waited for Dad to come home from church. I gave her a snack of a bowl of grapes, and she ate them all down. I started lunch for her, but she wanted to wait for Dad, so I set it up so they could eat together as soon as he came back. He was home by 1 p.m., I rushed out of there to get ready for my gig.

I am worried that she's not reading as much now.. watching more t.v. Dad has been reading to her in bed before she goes to sleep.. how freaking cute is that? Again, she didn't complain too much about pain in her back.. though if I mention possibly going to church some Sunday, she is quick to use that as an excuse. I remind her that they want to see her.

I almost cried when I watched her nod off in the chair before Dad came home. I am sure to tell her I love her, and give her lot's of gentle hugs and back rubs. She seems to appreciate that a lot.

Oh, and sure enough, when Don and my girlfriend stopped by around noon, she lit up quite a bit, and was quite lucid. She brought up a bit about her past, childhood homes and how her parents worked in banks..  It took her a second to remember Don's name, she said she wanted to say Dean, but she got it.
It was really good for her to have a little social interaction..

It is overcast and drizzly, I wonder what her mood will be like today.

Calm Day

I guess I'm getting a little "sin-ile" myself, because I just spent a good half hour writing up a post and didn't save it before publishing and lost the whole thing! Hate it when that happens.. anyway, here's take two.

Just back from spending four hours next door (noon to four), and I must say, Mom was in a much calmer state today. Dad happily shared that Mom ate a good breakfast and lunch today, plus a snack. She didn't complain about her back pain at all today, though she did remark once or twice how good it feels to have the heating pad at her back and throw over her legs. When Dad left to run his errands (which included picking up her new script of Namenda, which she will start tomorrow morning), she didn't once ask where he was, or if he was back yet, or wistfully sigh, "I just wish he was home now."

After he left, I put a load of towels in the washer. Mom wanted to help, so I suggested she add the laundry detergent, which she did. I suggested we do some more exercise (they both said she had walked around the dining room table five times earlier.) She agreed to that, so we bundled her up with coat, scarf, hat and gloves, and we marched right outside to the end of the driveway. She wanted to walk down into her side garden, and she was able to name a couple of her shrubs. I had to convince her to walk one more round up the driveway and back, and I tried to stall as much as possible, because the sunshine and fresh air surely can't hurt!

Back inside, we settled into her chair and started watching a program on HGTV. I asked her if she would like some tea. At first she said no, but when I told her I was going to heat up some water anyway for myself, she changed her mind and said, okay, if you're having some, I will, too. I brought out the tea and two scones, but she declined the scone, claiming she is "sick of them," but not in a grumpy way. It was sweet, because she remarked something like, "Once Daddy finds something he likes, that's it!" She drank all of her tea, and even accepted a second half-cup.

Then the wash was done, and though she offered to help, I said, that's okay, you chill, I'll pop them in the dryer and you can help me fold them when they're done. We settled back in quietly and watched more HGTV. Occasionally, she closes her eyes for a moment, but for the most part, she was watching and seemed to be following.

When the towels were done, again, I told her to wait, and brought them up in the basket. She helped me fold the smaller ones from her chair, and when they were all folded, she wanted to put them all away right away. I said, let's wait so we can see the end of this program. This seemed to be torture for her, but she appeased me, though that basked of folded towels sitting at our feet was really nagging her!

Once the show was done, she said, "Okay, I want to put them away," and she got right up. I brought the basket into her bedroom and sorted the towels on the bed. She admitted there that this was really hard for her, but eventually, we got all of the towels put away in their "proper" places. :)

Dad came home with the new meds, new new light bulbs, and a brand new dish rack! Hooray! He read the pamphlet that comes with the Namenda, and then handed it to me to read. When I told her about the possible side effects of the drug, she didn't seem too concerned. The side effects include dizziness, confusion (ha!) and gastrointestinal problems, but this is in a small percentage of users. We talked again about her condition, and I think, I hope, she appreciates the candor we must have with her about the disease. I learned from that pamphlet that over 5.2 million people in America suffer from AD! Of course, that's the drug company's stats, but, then again, I'm not one that follows stats so much!

I was able to squeeze in another load of wash, a little light closet organizing (Mom's clothes), and some cleaning and dusting while Mom and Dad did some reading. Things always seem to get a little more harried over there as it gets to four o'clock, so I started to get ready to leave. Dad plans on using the Trader Joe's frozen shrimp stir fry that Nat brought up last weekend for dinner, so hopefully this will be easy for him and satisfying for both! Thanks Nat!

As I left today, I felt less stress. I know this post is a wee droll, but this is just another typical day. I wish I could remember some of the humorous things that sometimes happen or get said over the time. Tomorrow, I'll be leaving mid-afternoon for a show in Damariscotta, then Sunday morning, I hope to get over there as early as possible so Dad can go to church. We haven't really discussed the details yet (it's really hard for Dad and me to talk too much without Mom wanting to know what we are discussing, but then again, we try not to hide anything from her.. it's tricky.)

Anyway, all in all, a calm day, for which I am grateful. I make sure to tell Mom everyday that I love her. And Nat, she remembered that you called last night. The one thing she did complain about is that she has "nothing to read" and that the print is so small in the magazines. Let's get her some big print books gang!

Stages

After browsing the discussion boards at Alz.org, I realized people were categorizing their AD loved ones in stages. So far, nobody has said what stage Mom seems to be in, so I found a link that describes the stages here.

Out of the seven stages, I believe my mother is now somewhere between stage 4 and stage 5, leaning possibly more towards stage 5. Somewhere between moderate cognitive decline (mild or early-stage AD) and moderately severe cognitive decline (moderate or mid-stage AD). The last two years, the signs have been there as she declined through stages 1, 2 and 3. Why has it taken us this long to define it?

I suppose this happens to everybody in one way or another. Just now, as I was over there staying with Mom while Dad went out shopping, I spent the time organizing and condensing stuff in their kitchen, specifically the herbs and spices. My guess is those 4 separate baggies of dried thyme, all in different locations, and two extra jars of curry (two of my mother's favorite cooking spices, when she cooked all those years), where a small example of her early onset AD symptoms. We just thought that was part of her quirky nature. I've been reading that this is very common.

Mom's moods are getting very erratic these days, too. Maria suggested that the full moon and bad weather can have an effect on the moods of AD patients. Sure enough, it is a full moon and the weather is drizzly. When I got there at 10 a.m., she was content to read her book. After about an hour, she got up and down a few times, restless. By the time Dad came home, I think she was beginning to get hungry, so I gave her a couple of celery sticks with cream cheese and paprika on them. She complained halfway through eating them that the celery got stuck in her teeth. She didn't want to finish them, but I gently pushed her and sat with her, and she eventually finished them. Then I gave her a small bowl of raw almonds and peanuts. Dad was milling about, putting away his medications and things, then she got antsy about lunch. She actually said something like, "Will I ever see this thing that is called LUNCH?"

Pretty funny, pretty sad. We convinced her to wait (it was only 11:30), and it's strange because she claimed she was "full" from the two celery sticks and small handful of nuts.

I left them alone to come home and do my stuff, but I wanted to post this update first.