Calm Christmas

The Christmas holiday went well. Mom was a trooper, and so were all the guests. We all contributed to the preparing and clean up of meals, and everybody was respectful towards Mom and Dad's need for relative quite and calm.

One of the highlights was Christmas Eve, when eight of us drove over to the church in two vehicles to attend the Christmas Eve service and watch Dad perform in the choir. When the eight of us strolled in just before the service was to begin, all eyes seemed to be on Mom as she said hello to a few people and waved to her friends in the choir. It was touching to see the kind and loving smiles on their faces. Mom was a bit shaky at first, and it took us a few moments to settle on the second pew in right in front of Dad's place in the choir group. When it came time to sing carols, I helped Mom hold the book and sometimes I followed the verses with my finger so she wouldn't get lost. Luckily, she remembered most of the words by heart. At the end of the service, many of the folks swarmed Mom to give her hugs and Merry Christmas wishes, and she really lit up.

December 24, 2010

Christmas day was fairly mild and sunny, and we took our time going through the gifts. Eventually, Mom got tired and needed to rest on her bed, and shortly after that, Dad joined her. The rest of us mutually decided to give them some quite, and we all slunk outside and came over to my house. After about an hour, some of them went back to start lunch, and my partner and I began to prepare the Christmas dinner, which was a rich and delicious seafood chowder. Shortly after cleanup, a smaller group of us retreated again back to my house for a video and some jamming, leaving just a few quite people left with Mom and Dad at their house.

Sunday morning, they all left quite early, and Mom and Dad were left not too frazzled at all by the holiday madness! Success!

Secretly, I was preparing myself for a possible bout of depression from Mom in the days following the Christmas weekend, but to my surprise, she was fairly even keeled. The was a huge, hallowing snow blizzard on Sunday night and all day Monday, but even that did not set her back too badly. Over the next two days, I slowly read aloud the final chapters of "The Secret Garden" to her, and when it was over, we discussed one of the themes in the book, which is essentially the power of positive thinking. Before I left there yesterday, she remarked again to me that she still couldn't understand what had caused her to have the breakdown last Tuesday night, which led us to admit her to the local Emergency Room. I think it's good that she still remembers the incident and is aware that it happened at all. She's been fairly diligent to keep hydrated with water, in hopes of avoiding another breakdown. Whether or not being dehydrated was the cause of it is still in question, but keeping her hydrated certainly can't hurt.

Yesterday afternoon, I helped Mom write a birthday card to her oldest son, who has the unfortunate date of birth on January second. Her handwriting has gone from perfect and flowing to scrawled and childlike, and though she was very frustrated writing the words in the card, she did it with our encouragement. Dad looked at the card and seemed profoundly depressed at the site of her handwriting. He admitted to me just before I left yesterday that he was a little depressed. At least he's not afraid to admit it. It's so important to be honest with ourselves about our feelings over this journey.

Today is another mild and sunny day, and I will be heading over there shortly to collect the garbage and recyclables and bring it all to the dump. I'd like to try and get Mom outside for a short walk about today, too.

Mom has an appointment with her primary care physician early next week. Should I go with them?

Fingers Crossed

Mom was back to her "usual" self today. I went over early in the day, in order to be there when Maria showed up for Mom's weekly bath. Maria showed up a few minutes after me, with a nice Christmas cheesecake in hand as a gift to Mom and Dad.

After filling Maria in on what had happened last night, Mom and Maria retreated to the bathroom, which left Dad and me some rare time to talk in private. We discussed some of our conclusions and impressions from last night's events, as well as discussed some of my concerns about what would happen if he became incapacitated or dies before Mom. This was when he filled me on having an appointment for tomorrow morning with an attorney to fill out and sign a Financial Power of Attorney contract, one of the three legal things that should be done in this situation. The other two, which I think are "end of life" and "power of attorney"(I think?) are already settled.

Mom will have to go to the lawyer with him tomorrow morning and make a signature in her very shaky handwriting.

After her bath and Maria left, she practically begged me to read to her from "The Secret Garden." As you can imagine, I was a bit nervous about it, but I started back on the chapter I started last night, and she was engaged until I finished, about three or four chapters later. During this time, Dad drove down town to buy a few staples, and when he came back, I ran home and jumped in the Jeep to go down town myself and get a little last minute Christmas shopping done and shop for tonight's dinner. I told Mom what I had to do, and she accepted it, not without a little bit of pouting.

I zipped back over there about three forty in the afternoon, just when "crazy time" sets in (ha ha, really, "sundowners"), and she and Dad were just finishing up a John Wayne movie on TCM. After the movie, she asked me if I would read to her some more, but I said I was too tired and that I wanted to save the book a little longer. She agreed to that, but I could see her begin to get a little bit anxious again. Dad did a few things while I sat with her, and then I explained to her I had to go. She was cool enough. I kept watching her to make sure she didn't fall back into another episode, but thankfully, this did not happen, at least not while I was there.  I think she'll be okay for tonight.

Maria gave us the name of a mild sedative we could get prescribed from their doctor, and it is even available in a cream, so I'm very anxious to get that if we can. Because of the holidays, though, it may be tricky to get it right away.. I'd really like to have that on hand for the next intense episode. We could have really used a mild sedative for her last night!

Maria also told us Mom was dehydrated again, and I suspected that might be the case, but after Maria told us a lot of stuff made sense to me. At the ER last night, when they rolled Mom in her bed to the CT room, she complained of feeling dizzy.. a classic symptom of dehydration.

Today, we made her drink a lot of water, and from now on we will remember to be more vigilant about keeping her hydrated. I know it's probably wrong, but I was surely tempted to mildly "threaten" her that she needed to drink the water so she wouldn't have to go back into the hospital... what else can I do?

So, another day done for me. Meanwhile, Dad is ever so patiently handling the rest. Feeding her, amusing her, answering her endless questions, undressing her for bed, giving her her night time pills, tucking her in. It's a lot, and he's doing such an amazing job.

Tomorrow the fun begins. They go to the attorney, my younger brother and his wife arrive for Christmas, and my partner and I have a gig at night. Friday, my sister, brother in law, older brother and nephew arrive, and we will attempt to get Mom and as many of the gang that can stand to go to the Christmas Eve church service at their church. Saturday is Christmas, Sunday they all go home.

Let the fun begin... (fingers crossed.)

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.

Leveling Out?

I don't know, my experience with Mom in the last couple of days have been not so bad.

Wednesday night, I went over a little before six p.m. to stay with Mom so Dad could attend a meeting at the church. She was alert and calm all night! I pulled out a book of Christmas carols and we sang some of the songs for a little while. She really enjoyed that.

She's been watching a LOT of Turner Classic Movies lately, maybe too much, so she was not upset when I turned the channel to Fox and we watched a couple of episodes of "Two And A Half Men" reruns, in between Celtics basketball pre-game analysis and the game. She only asked me a couple of times what time it was. At eight o'clock, I turned it over to the program I watch, "Survivor," and she didn't mind watching that either. Once and a while, her eyes would get droopy, but she didn't sag down and close her eyes hard like I've seen her do before.

Dad was home before we knew it, and she was still bright and alert when he came in the door. Success!

Today, I didn't get over there until about twelve thirty in the afternoon, and when I drove in, with my weekly garbage in the Jeep, to pick up their garbage and recyclable, Dad's car was out of the garage. When I went in, she was lying on the couch. She seemed a bit distressed.

"Are you okay, Mom?"

"I'm just worried about being alone."

"Do you want me to stay here until Dad gets back? I can always go to the dump later."

"No, that's okay."

"Okay, if you're sure."

So, I gathered their trash and recyclables, loaded the Jeep, said I'd be back in ten minutes, and that's what I did. When I got back, she was still on the couch, and I did their breakfast and lunch dishes, then settled into a chair with a magazine and sat with her while she napped. Dad came home about fifteen minutes later, put away his groceries, then went outside for a little walk. Mom stayed on the couch, I read some more, Dad came home, and went downstairs to look at his emails.

Mom asked me to read to her from some of magazine I was reading, "The Week," so I did, not holding back on the disturbing stories, but she didn't seem to mind hearing them. I made sure to spice the bad news blurbs up with the fluffy news pieces. Dad came up, it was four o'clock, he took his pills, Mom started getting a little restless.

We walked around the table eight times ("I can't do anymore, I need to sit down.")

She asked if it was time to start dinner, we said, no, not yet, so then she said she wanted to sing some Christmas carols. I took out the book again, and with the fire in the wood stove warming us up, we feebly sang a few carols.

Dad told Mom that one of their church friends would come to stay with her Sunday afternoon so he could go sing carols at a few nursing homes with his choir after church (and so that I could go to my weekly Sunday afternoon gig.) She accepted that, with little argument. (Though, we may have a snow storm that afternoon, so the plans are subject to change.)

About four thirty, I put on my coat to leave. Mom and Dad saw me to the door, and she thanked me for coming over. I told her I'd see her tomorrow.

Maria wasn't able to come on Wednesday for Mom's weekly bath because she was sick. She thought she might be able to come tomorrow, Friday. If not, Dad mentioned he might try and give her a bath. Mom said, "you could do that."

Mom seems to understand that Dad and I are trying to do all we can to make things comfortable for her. Though, they both mentioned that neither one of them slept very well last night...

All in all, not too much drama for the last few days, which is good for me, because I've been worried about my friend Terry who has been in recovery this last week from a liver transplant. It was touch and go for a while there, but I spoke with him tonight, and it looks like he'll be released tomorrow at noon.

Finally, a little bit of emotional relief!

Activity

A lot of activity for Mom this last week.

Last Wednesday, the long afternoon at the community center. Then on Saturday, Dad convinced Mom to go to an afternoon opera performance, live-streamed onto a giant HD screen from New York City (Verdi, I believe it was), over at the private academy in one of the nearby towns. Sunday, because Dad did not have to go early for choir rehearsal, she went with him to church! Then yesterday, late afternoon, they went down town to a little local hair salon and had their hairs cut. On the way back from their pampering, they stopped in at our house for about twenty minutes for a small glass of wine and to view our Christmas tree.

December 11, 2010

Dad is handling her with such sweet devotion, despite her bouts of paranoia and frustration. They only stayed for the first half of the very long opera presentation, but they both got worn from the long sitting, so it worked out well. When I called Mom from my afternoon gig on Sunday afternoon, she seemed happy that she attended the church service. And she hardly made much of a stink at all about going to the salon, though there was a part of her (the Alzheimer part, I think) that thought it not necessary. However, to see her come into our house last night with freshly washed and cut hair was lovely and affirming.

Yesterday, she asked me about Christmas, and slowly, I tried to explain the family plans. I brought the calendar over to her lap, and pointed out the days. We are still trying to decide between the siblings about exact times and meals.. perhaps we may host the gift giving and / or the Christmas dinner here at my place, in hopes of having less hustle and bustle over at their place... however, the scene is much nicer over there, so I don't know yet. So many little details to work out, yet the only thing that really matters is we make this as smooth and trouble free as possible for both of our parents.

I noticed Dad thoughtfully pre-cut all of Mom's chicken into little, bite sized portions for her mid day meal yesterday. That's one of the things they tell us to do. She is complaining about the use of her right hand... it's getting harder for her to grasp things (in all senses of the meaning!)

She had tried to call me yesterday but got confused on how to use the phone.

Last week, before going to the community center luncheon, she wanted to apply lipstick to her lips, but instead applied a fat tube of face cover up. I had to wipe it off with a damp tissue and reapply the lipstick. Dad mentioned that a few nights back she put a moisturizer on her toothbrush instead of toothpaste.

I feel the need to simplify the area around her bathroom sink a little bit more, with out upsetting her. I'm keeping an eye on it, try and find my opening, and move swiftly.

We've praised her braveness and savvy for heading out into the world so much these last few weeks. It's exhausting for her, and always, the concept of time is a mystery in her injured brain. Patience and encouragement, affirmation and acceptance all play into these moments with her. Finding the balance between having empathy for her condition, without patronizing her. Allowing her to have as much dignity as possible, all the while watching her out of the corner of your eye so she does not harm herself.

We are walking on a tightrope, two hundred feet in the air, with no net below.

Quietly We Go

Friday and Saturday I spent as much time as possible with Mom and Dad.

Friday she ate small amounts and appeared depressed and tired. She slept a lot. I went over a short time before their lunch, and quietly fluttered about - putting a load of linens and last weeks sweater in the wash, whipping through the breakfast dishes, sweeping up the floor in the kitchen and hallway. As they ate their lunch that Dad put together, Mom distracted by the Turner Classic Movies channel, I snuck upstairs to the little storage room and scrounged around for more Christmas decor. I came down with a pile of Christmas table cloths and linens, plastic greenery for a center table arrangement.

Quietly, so as not to rustle Mom out of her chair and her lunch, I stripped the Thanksgiving table cloth and arrangement and worked on dressing the dining table area in a Christmas theme. I had to redo it a few times to get it right..  Mom was always so good at putting together just the right look, her creative eye so tasteful. I try one look, then another, and finally get it good enough for now, the days leading up to Christmas, when it will, no doubt, be redone in an even grander fashion. In the years past, if I was to take on this task, I would have worried that Mom would not approve, or would perhaps, edit or readjust  some of my choices. Now, sadly, it doesn't matter to her anymore.

Though, when she finally did acknowledge the decor, after she finished her lunch and passed by with her dishes, she complimented the look, and especially loved the dried greens arrangement. A sliver of my old Mom - ever approving, supportive, Mom.

That afternoon, after lunch, Dad ran out to the post office. I offered to read to her, a short story in the latest New Yorker. "Costello," by Jim Gavin. A story about a plumber, and it isn't until we are halfway into the story that it is revealed he is a widower. It is a long story, and Dad comes back from the post office and quietly sits down on the couch and listens to me read aloud the latter half of the story, he chuckling aloud in spots, while Mom sits mostly with her head down and her eyes closed.

But she is listening, I am sure. Towards the end of the story, there is a passage about the last moments of his wife's death, how he wishes his memory of her was the woman he loved before her illness, not the memory of her faded, ashen person, stripped of color and life by the cancer. How he wished that he had been able to kill her before that wife took over his memory. As I am reading the passage, I realize it's hitting a bit close to home; Mom exclaims out loud, "Oh!" I know what she is thinking, I remind her that the character's wife was sick with cancer... it's an awkward moment, and I hurry to finish the story.

Friday morning, in an effort to keeps our reading material light, I gather a book of Emily Dickenson poems, two worn A.A. Milne books of children's poetry, and two little "posies," little friendship books I've carried around with me since my childhood. After making and serving them (at the dining room table) a simple lunch of soup and crackers and grapes, I sat next to her in her chair and we read together the little birthday poems and passages she, Dad, and my siblings and childhood friends wrote in the books so many years ago. Then we read aloud together a few of our favorite A.A. Milne poems. She remarked that she remembered the poems so well. "I do, too," I said. "You used to read them aloud to me when I was a girl." The poems still resonate within us both.

Dad snuck out to shop, and Mom wanted me to read some more to her from the book we started the other day, a novel about a Native American indian family living in current times. I can't remember the title right now, but it's typical, mystical Native American indian writing, with a lot dialogue and characters. Hard enough for me to follow! I read aloud for almost an hour, and stopped when Dad came home, and surprisingly, when I asked her if the story was hard to follow, she said, no! This is a book that her sister had read for a book group, so it's nice that Mom is hearing the story, too. In some of the columns of the pages, there are notes written in pen by her sister.

Soon, with Dad home and the groceries put away, Mom said she wanted to sleep. Dad said he did, too. He went downstairs to the little daybed in the basement, I settled Mom first into one of the couches. I sat quietly and read a magazine. After a few minutes, Mom got up and said she wanted to go to her bed, where "it was quieter." I helped her get settled into her bed, then, tucked her in and kissed her cheek, then went back to the living room and read quietly some more. After ten minutes or so, she was up again, saying she still couldn't sleep, wanted to try the other couch. "Where's Dad?" "He's downstairs taking a nap." "Okay."

I tucked her in for a third time in the other little couch. She said she was tired but she couldn't fall asleep. Finally, she settled down, and after a while, I decided to sneak out. As I was putting on my coat and hat and gloves, she called out to me. "Are you leaving?"

"Yes, I'm going to go home now, okay?"

"Okay, thank you."

"I love you Mom, and see you tomorrow."

"Okay, I love you, too."

"Bye bye."

Quietly, I go. Over the well worn path, my footsteps in the light blanket of snow, doubled back and forth, so many times over.

Support Group

We did it. Yesterday, we went down to the community center over in the next town, partook in the senior luncheon, and then Dad and I attended the Alzheimer's caregivers support group while Mom was in the next room with a respite worker and one other individual with AD.

It was quite the harried experience, even for me. We arrived at the luncheon at just a little before noon, to a room packed with lovely seniors (many of whom I recognized from my four years of working in the local market as a produce clerk), and the workers had to scramble to set up an extra card table for us. It was placed by the main door, which would let in a chill every time another individual entered or left the building. The utensils, paper plates, jug of water, paper cups, butter pads and individual creamers were strewn sloppily across the tiny table, fairly dismal, but we tried to keep our chins up, especially being the new kids.

There was a loaf of sliced fresh banana bread in a basket. Mom nodded her head "no" when we offered her a slice at first, but she soon she conceded and ate a few bites. We were joined by another senior man, one I knew and had spoken with before, harmless but one of the dullest conversationalists. I introduced him to Mom and Dad, and Mom, bless her heart, tried in vane to get a conversation going with him, but every time she asked him a question, his answer would drone on, drool on his chin, and basically only face me!

The slop they called "lunch" was soon served; a chicken and noodle dish, really wretched, to be honest, but Dad loved it, and everybody else in the room seemed to swill it down, except for me and Mom, who ate as much as she could before announcing she was "full."

After a small styrofoam dish of chocolate pudding with whipped cream and coffee was served, an announcement was made about next week's Christmas dinner, and soon the room was active with people rising and putting on their coats, clutching bags and walkers, canes and aides arms. The door by our seats was opening and closing, letting in the cold air. Mom was getting restless, and we still had fifteen minutes to go before the meeting started.

That is when things got really confusing and stressful for Mom. As it was our first time attending, we did not know who to look for, where to go, who to ask. Eventually, Mom got up and asked somebody herself! "I have Alzheimer's Disease, where is the meeting?"

During those moments, people coming and going, introducing themselves, Dad and I getting our bearings, Mom was clutching her bag and telling as many people as she could that she had Alzheimer Disease and was this were the meeting was? At one point, I pulled her aside into a quite room, sat her down and tried to calm her and explain what was happening. Dad was off trying to find out where and who we were to meet, and Mom was getting more and more agitated. She actually seemed to want to have a group meeting, some conversation, something.

Finally, we met the social worker who was running the group, and she directed me to where the respite worker was. I recognized the respite worker, and she me, from my produce clerk days, so I was relieved. She sat Mom down with one other man with AD (the husband of another woman I recognized from town who was a long time group attendee), and the respite's husband was there, too, not with AD, but legally blind. He set up a boom box and played Christmas music, while we left Mom to work on a Christmas card project. I tried not to worry too much about her.

Dad and I finally got into the group meeting, and besides the social worker, their were three other senior women, with Dad and me. The group went about as well as expected; some shared miseries, some shared information, announcement for a free class on caregiving for AD and dementia individuals later in the new year. A little venting, a lot of asides. I think the best thing Dad may have got out of it is the realization that he needs to meet with an elder law attorney to set up Durable Power of Attorney and Medical Power of Attorney (not sure if that's the same thing as  the "end of life" stuff they completed late last summer.)

Me? It was just nice to support Dad and Mom in this adventure. Finally, Dad admitted to the group that he was tired (it was to meet until two thirty), so we excused ourselves and left fifteen minutes early. Apparently, Mom stole the show out there, singing along with the music played and naming the singers.. naturally, she charmed them all.

Later, in private, as I drove them home in their car, Mom admitted that she nearly "burst out into tears two or three times" wondering about Dad and me, and wanting so badly, to go home. Can't blame her, really.

However, I gave her a lot of credit for going to this, and she was a trooper. I told her we did this for Dad, and now, "he owes her one." The support group meets once a month.

Next time, we will skip the luncheon.

You've Got A Brand New Key

Mom seemed less depressed on Sunday. She did spend much of the day napping... but at least there was less anxiety. When I arrived in the morning at about nine thirty, she sounded perky when she greeted me. We chatted a little bit, she offered me some coffee, then I just sat and read while the television lured her back into sleep.

After about an hour of that, she asked if I'd like to read to her, and so for the next hour I did, and sadly, we finished the Wharton autobiography. I gave her a late lunch, of which she ate very little, and Dad called around quarter of one to say he was on his way back.

I had considered staying home from my afternoon gig that day, but once I saw that Mom was somewhat "okay," I decided to go after all, and I'm glad I did because it was a great day at our jam.

I took Monday morning off, then went over late afternoon, around two-thirty. Dad's car was out of the garage when I got there, and Mom was napping in her chair. She greeted me pleasantly enough, and I asked her what she had been doing all day.

"This is pretty much it."

So, I got her up. We walked around the dining room table ten times, I washed the breakfast/lunch dishes and had her dry them and put them away. Dad came home with groceries and mail, just as I was making some tea, and he joined us for tea after bringing in some more firewood from outside.

Then Mom decided she wanted to go outside for a walk. At first Dad and I were skeptical about that idea, because there is snow and ice on the driveway, but she insisted, so I told her she had to change into her rubber soled boots and bundle up. She agreed to that. I changed her shoes for her, helped her put on her warmest winter jacket and button her up, wrapped a big scarf around her and plopped the big white fuzzy hat on her, and she put on her fuzzy black gloves.

We took note of the time together - it was three fourteen - and off we went, out to the icy, windy outdoors. We walked up the road a bit, then back down around. She likes to sing a song that's on a television commercial a lot these days, "Oh ~ I've got a brand new pair of roller skates, you've got a brand new key.." and that's all we know, so we hum the rest.

I tried to keep her out as long as possible, but she got cold and restless, so in the house we went.

It was three twenty one when we got back in.

"Seven minutes, Mom. Not bad."

"We're back!" she yelled down to Dad in the basement. "We were out for seven minutes!"

With a little color in her cheeks, we undressed her again, changed out of her boots back into her sandals. Dad came back upstairs and turned the television over to Turner Classic Movies, where a funny old movie called "All Night Long," a black and white picture from 1962 was playing. It featured jazz musicians and I found it very groovy. The plot was hard to follow, though, and soon Mom wanted to "sleep" again. So we propped her up on the little couch and she rested some more.

Sigh.

Tomorrow, we still plan to attend the local Alzheimer's support luncheon and discussions, just after Mom finishes her weekly bath with Maria.

Love And Misery

Two things Mom exclaimed at one point yesterday morning;

"ARG! This is a such a crappy way to die!"

("Yes Mom, it really is. But you are not dead yet, and neither am I or Dad, so let's concentrate on living right now, okay?")

"Are they all coming up here for Christmas? I don't want them to!"

(No comment from me.)

Every single breathing moment, Mom is in angst. While the rest of us are busy making plans for the holidays, living our busy lives, preparing meals and decorating our homes, Mom's life is a big warbled swirl of confusion and frustration and misery.. with only slight moments of murky joy.

All I want to do is comfort her in every moment that I can, in any meager way that I can. Love, understanding, empathy, comfort and love love love..

Such a crappy way to die, indeed.

Fighting Off Sadness

I'm not going to lie to you; I am fighting off the weepies this morning, thinking about Mom's suffering.

This is, by far, the saddest thing I've ever had to witness, personally. Watching my beautiful Mom fall deeper and further. It's agony.

And Dad.. what must he be feeling? A huge sense of loss. Depression at losing his so vibrant and alive wife of forty seven years. Anger. Frustration. Physical and mental exhaustion.  It's all there.

I went over there yesterday after the second phone call, confirming what Dad and I were not surprised would happen.. Mom canceling the ladies dinner at the restaurant. He and I were very supportive with her about her decision, and tried our best to let her know it was alright. Mom was calmer once she proclaimed her decision, but she also spent a great deal of the day napping.

And when I went over a second time, late in the afternoon, with the December darkness closing in on her like a blanket, her restless mind controlling her body like a robot.. sit down, stand up, sit down, stand up, walk somewhere, walk back, sit down in the chair, get up, walk to the couch, lie down, get up.. Dad and I acting as anchors in our chairs, gently speaking with her and riding her waves.

Dad brought up in that time that he wanted us to attend an Alzheimer care givers luncheon and discussion being held at the community center in the next town over, next Wednesday at eleven-thirty in the morning. Mom reacted surprisingly positive about the idea, remembering back, I suppose, to the days she tirelessly worked with the Council On Aging. She assumed it would be a holiday party, and Dad and I did not say much to correct that. As long as we can get her to attend with us, for it is open to both care givers and those suffering with AD. If all goes well, she will have her bath in the morning, then we could drive down to the luncheon and discussion. Hopefully, she won't be too tired and refuse to go.

Day time is always a lot better than night time.

We had a light blanket of snow last night, but today the temp is fairly mild and a light haze of sun.

Last night, Dad suggested that he and Mom switch sides of their bed. He's hoping to get better sleep. I am curious to go over and see if that helped.

More than once, Mom has said to me, when obviously distressed or uncomfortable, "I can't help it, it's the symptoms." At least she's acknowledging it, but it still doesn't take away the symptoms and the agony. I told her yesterday we are all empathetic to her suffering, and we can't imagine how awful it must feel. I also told her it is affecting us, too. Then she says she feels guilty. And we reply that it's not her fault.

And around and around we go, spiraling down. Somewhere, in the middle of that spiral, is a thin line of white light, to which we hold on to with all of our strength and will. But it is so slippery, and I hope we won't ever lose our grip.

If you haven't already, look at this tour of the brain with AD. This is what is happening with my Mom, and millions of other people, as well.

Phone Calls And Soup

Today's first phone call was from Mom again, around eleven thirty in the morning.

"Hi, this is Mum. Do you still want to go to that dinner with the ladies with me tonight?"

"As long as you want to go, I will."

"Oh, okay. We have to be there at (what time is it honey?) ('five thirty') five thirty, so we have to leave at (what time?) ('five or ten minutes past five') five or ten minutes past five. Five or ten past five."

A pause. Then, "I'm feeling pretty shaky right now thinking about going."

"It's up to you Mom. If you don't want to go, we won't go. But, if you do, we will. Just try not to think about it right now, it's still many hours away. Just try to relax and enjoy the day."

"Oh, okay."

"We will talk later, and you can decide then."

Dad got on the phone and together, we confirmed that to her.  There is a chance of snow tonight, so this could seal the deal. Snow plus driving at night plus being around a bunch of chatty women = really scary and confusing for Mom.

"No pressure, Mom, no pressure. What ever you want to do."

Yesterday, sunny and not too too cold, went fairly well. Only one "disaster," when I foolishly gave her a pretty full bowl of hot soup on a tray in her chair and, naturally, the minute I turned my back, she spilled a good portion of it on her lap and sweater. She was pretty upset with herself, but somehow, miraculously, I managed to convince her to change her pants and sweater. She blamed herself, I blamed myself, we managed to put it past us.

Earlier, I got her to go out for fifteen to twenty minutes, walking around the melted driveway. She agreed to let me bring down her collection of fir trees to decorate the windows. She even helped arrange them. She was pleased with the look. Slowly, I am decorating the living room area with her Christmas decor.

She received a phone call from one of her oldest, dearest girl friends. She spoke with her for about ten minutes, early in the conversation telling her, "do you know that I have Alzheimers?" Of course, her friend knew, that is why she called, and after Mom got too antsy to talk anymore, I chatted with her for a few minutes, too. Later that night, I felt sad, thinking that that could be the last time they speak.

Later, Mom's sister called, and Mom spoke with her a bit longer, confirming their dinner engagement at her house this Saturday night. Though, who knows with the weather, it may have to get cancelled.

After lunch and the soup spilling fiasco, I read some more to her from the Wharton book. Again, she closed her eyes and lowered her head, resting her chin on a big pillow in her lap, and occasionally, she'd surprise me and blurt out and correct one of my mispronunciations.

Eventually, she wanted me to stop, so we put on HGTV for awhile until Dad got home from his doctor's appointment. I complimented her on a very busy morning, and she agreed with me.

Later, I stopped back over on my way back from grocery shopping, and gave her a little juice box sized plastic sip cup. She said she had just woken up from a nap. Sleeping is the best way to escape her frustration.

She mentioned yesterday that she was embarrassed about how she speaks. Understandable. Maybe I'm getting used to it, but it's not that bad. It's worse when she's upset, but when she is speaking of the deep past, it's not as noticeable.

It's hard for me not to think about her and her moment to moment struggles.

************
Was just about to post this when I got a call from Dad. "Hello?"

"Hi, here's Mom."

"Hi, I'm sorry, but I just can't go tonight. I'm shaking like a leaf thinking about it. I'm sorry, but I just can't go."

"That's okay, Mom. I'll be over in a little while."

"Okay, thank you, and I'm sorry."

"That's okay, Mom. Bye."

"Bye."

The Little Things

Yesterday morning, the first call I got was from Mom.

"Hi. We are trying to do a load of laundry and we don't know where to put the soap. Can you come over and show us where it goes?" (In the background, I hear Dad say, "Yes, but she doesn't need to come do it right now!")

I was finishing up my own laundry, and as I was waiting for that and taking a shower, I realized how funny and sad this was. I mean, it's just the little things like that. For years and years, Mom meticulously handled the laundry for both of them, plus all of the linens and towels when there were many house guests, and now, she can't even remember how to add the laundry detergent.

On top of that, just the very thought of getting the laundry washed and dried and folded and put away takes a tremendous toll on her mind. She can not relax until it's all done. Meanwhile, her mind is so tired from thinking about it all, all she really wants to do is sleep to get away from the intruding, mixed up thoughts.

I went over and showed them again how to add the soap, and all was good again.

I went back over in the afternoon. It was raining. Mom was napping in the chair. She got up when I entered the house, and told me she had just tucked Dad in for a nap in the little day bed downstairs. He has not been sleeping well...

I made up a pot of tea, and she asked if I could read some more from the Edith Wharton book. I was happy to do that, but after about thirty minutes, she got restless again. The afternoon was getting on, the sky was dark, sundowners comes on. She wanted to check on Dad, to make sure "he was alright."

Okay, I agreed to take her downstairs, but shhh, let's not wake him.

We crept down the stairs and when we got to the bottom step, hand in hand, we both peeked around the corner, and there he was, sitting at his desk in front of his computer. When he saw us, he laughed out loud. We must have looked pretty funny, silently peeking our heads out from the steps.

He explained he was corresponding through Facebook with one of Mom's oldest girl friends, who had recently been ill. Mom wanted to get in on what was happening, but her patience in front of the computer is so very slight. She says, "I want to see, what does she say, does she know about me and my Alzheimers?"

Dad tried to read aloud the "conversation" back and forth between he and I and our old friend, but she couldn't stand there long enough.

Back upstairs we went. I stayed a little longer, and suggested maybe her friend would like a nice card from her. She agreed to that, but we didn't have the address and by this time, she was getting really antsy. Her right hand is stiff now, she really can't write anymore. I was going to help, but decided we would wait until the next day.

I left them in a fairly decent state. The sun is out today, and I am going over shortly so Dad can head out to a doctor's appointment an hour away. She still wants to go to the ladies dinner Friday night..

We will see, we will see.