Hit Me Like A Brick

Today I decided to get off my lazy butt and start cleaning MY house. I’ve not taken very good care of it since I moved in with Mom. Being so tired all the time, I don’t give my house the attention or the thorough cleaning I used to. I manage to swipe a feather duster around the corners of every room and all the shelves and knick-knacks every few weeks and mop the floor once a week, but it’s not the same.

I gave both bathrooms a thorough cleaning—the down-on-my-hands-and-knees-type cleaning like I used to. I scrubbed the walls and took the shower curtain down and cleaned it. The bathrooms looked so nice when I finished that I decided to move into the bedroom and start working on it. I opened every drawer of the dressers and neatly rearranged all the clothes, cleaned the dressers with Murphy’s Oil soap, and gave them a good waxing. I put clean sheets on the bed, ran the sweeper, and started the laundry.

Then, I decided to tackle the bedroom closet. When I moved to Mom’s most of my clothes moved with me, but the floor of my closet was piled with clothes I’ve been hauling back and forth. It was time to get them out of the piles and hang them or put them in drawers. It took me 30 minutes to pull all the clothes out and set them on the bed to go through and decide where I was going to put what. There were things in that closet I knew I’d never wear so I put those items in a box to take to Good Will.

I sat on the floor of my bedroom looking at the room, clean and fresh, and felt strange looking at a bed and cleaning a room I haven’t slept in for three years. That strange feeling turned to sadness as I glanced at all the wall hangings that had once been so neatly dusted and cared for. I turned my attention back to the closet as not to cry and arranged the half dozen pair of shoes on the shelf and pulled out another pile of things I had no idea what they were because I hadn’t been in the closet for so long.

Still in the bag, was an Indian blanket Two and I purchased at his reservation in North Carolina when we were there four years ago. Beneath that was a pillow heat/massager that would have come in handy the past few years had I remembered I had it.

Then, below that was what hit me like a brick! It was a treasure I’ll never forget nor one I’ll ever get rid of. My bed caddy! What’s a bed caddy and what’s so great about it you ask? A bed caddy is what you keep your book, eyeglasses, TV remote, and other essentials close at hand. It tucks easily under a mattress and hangs on the side of the bed. This bed caddy is special. I made it from a pair of my dad’s carpenter jeans.



After Dad died, I made one for Mom, both my sister-in-laws, and me. I’d taken it off my bed just before I moved to Mom’s since I wouldn’t be using it. When I pulled it out from the closet, all those strange feelings I’d had while glancing at the room boiled up inside and spilled from my eyes. I sat, on the floor of my bedroom, hugging my dad’s jeans and cried. The book I was reading when I left to live with Mom was still in the pocket with a bookmark Mom made me still holding the place. The pockets also still held my body lotion, reading light, extra pair of outdated glasses, and that darn TV remote Two Feather hasn’t been able to find for three years. I thought finding the TV remote would bring me to my senses when I chuckled, but the tears continued to flow. I held Dad’s jeans against my chest and ran down the hall to Two’s workroom, tears still streaming down my face.

“What’s wrong? What’s that?” he asked. Between sobs I managed the words, “My dad’s jeans.” The shocked look on Two’s face didn’t help stop the tears and neither did the bear hug he gave me when he realized what I was holding. I buried my face in his chest and sobbed, long and hard, whispering, “I miss you. I miss my dad. I miss my mom. I miss cleaning. I miss everything!”

I wiped the tears from my face, walked back to the bedroom, placed the TV remote on top of the TV, and put the bed caddy back in the closet. Two came in and asked why I didn’t put the caddy back on the bed and I told him I wasn’t putting it back until I could use it again.

He laughed and said, “In that case, you didn’t have to change the sheets on the bed. I haven’t slept in it since you left. I sleep on the couch.”

It was then that I realized how difficult our separation has been for him. In these three years I had no idea that Two didn’t sleep in our bed. All this time I thought he was sleeping comfortable and instead he’s been stretched out on a tiny couch in our living room. He’s always called it the “Joanne couch” because it’s only four foot long.

It’s strange how much our life has changed during this care giving journey and how little things like a bed caddy made from my dad’s carpenter pants can send me to tears. Dad died of Alzheimer’s and will be gone 10 years on the first full day of spring. There isn’t a day goes by that I don’t think of him. Losing a loved one is one of the hardest things to deal with. We caregivers tell each other it gets better, and it does eventually, but there are always those unexpected little things that take our breath away and reduce us to tears. Today, for me, it was my bed caddy and Dad’s jeans. Even after 10 years. Love you, Dad. I miss you.

Mom has been sleeping better with this low dose of Seroquel. Friday, Saturday, and Sunday night she only got up twice to use the bathroom each night. YAY!! I slept pretty well on Friday night, but Saturday night I woke up five times. I think my body and mind had been so used to reacting these past three years that it doesn’t know what to do when it’s not called to duty—so it did what it was used to—woke up. It didn’t take me long to get back to sleep once I realized that there was no need to run to Mom. Sunday morning I did feel the effects of not sleeping sound, though. I felt like I was dragging.

It was a dreary day and Mom was having a difficult time deciding what she wanted to do so I decided to pack her up in the car and go visit my Uncle Joe. I normally visit him twice a month, but with everything that’s been going on lately, I hadn’t been to see him since Christmas. I called him in between, but that’s not the same as a personal visit.

He seems to be doing well at the nursing home. He still says the food is lousy but the nurses are good to him. We visited for a few hours and when Mom used the bathroom Joe said he’d follow us to the elevator when she came out. He looked tired and I guess he had had enough visit for one day.

When Mom and I got home, she wanted to eat and go to bed. I tried to keep her up until 5:30 but she was dozing off at the kitchen table after dinner. By the time I got her dressed for bed she was exhausted and fell right to sleep.

Monday was a nothing day. I did absolutely nothing. Guess I’m entitled to that once in a while. :D

Daughter Without a Name, Ice Storms, & Wishing for Spring

Last weekend was a bit crazy and the week that followed wasn’t much better. I posted book reviews instead of talking about the goings on here at Mom’s. Last Sunday when the lady from church was here, she and Mom were talking about family. Mom told her that she had a sister and two brothers and her two brothers were still alive and work together. Alrighty then. Truth is, Mom had one brother and he’s been deceased for more than thirty years. Sunday, I also realized that Mom does know that I’m her daughter, but she had forgotten my name. Every day when I pick her up at day care and she sees me, she says, “There’s my daughter.” Sunday, after the lady from church left, Mom and I were talking. I figured I’d do the little memory quiz that I used to do once every couple weeks. I haven’t quizzed Mom for about two months. At least once a month I would joke with her and ask if she knows who I am and she always said, "You're my daughter." Never thought to ask her if she knew my name. I asked her birthday, address, phone number, all of which she didn’t know the answer. She did remember she was born in October, just not the day and year. I asked her how many kids she has. She did say three. That’s correct.

“What are they?” I asked.
“I think I have three boys,” she said.
I giggled and said, “If you have three boys, who am I?”
“You’re my daughter,” she said.
“Okay. So you can’t have three boys if you have a daughter, Mom.”
“I guess you’re right.”
“What are your kid’s names?”
“I think they are Bob and Ray.”
“What’s my name, Mom?”
She looked at me with such shockingly sad eyes and said, “I don’t know. What is your name?”
“Joanne. My name is Joanne, Mom.”

I knew one day Mom wouldn’t know who I am and I prepared myself for it. I guess it just shocked me that she knows I’m her daughter, but has forgotten my name. I tried to think back to when and how long it’s been since she’s called out to me by name, and I pinpointed it to mid-October when Mom was up and down half the night looking for Mr. N. She would call out to me by name back then, yelling up the steps, “Joanne, are you up there?” She hasn’t called me by name since. Mostly, I’m “her daughter” when she talks about me, and when she talks to me, I’m “honey” or I’m not addressed at all before asking something or looking for me. Wow! It very well could be that she hasn’t known my name for more than three months. We've gone through a few moments at times when she wasn't sure who I am. I've already mentioned those times. Strange, but I think I accepted the fact that she would someday not know me at all more than I accepted her not remembering my name. The two just seem to go together, but I never imagined she’d remember who I am and forget my name. Then again, she can’t understand how my daughter is her granddaughter, so I don’t think I want to ask if she understands what a daughter is. LOL

After realizing Mom didn’t know my name, the whole darn following week just kept getting worse. It was all sort of depressing, actually. I did log in long enough to post a “Happy Birthday” to my dad. That was part of the depressing week. The other part was that I felt lousy. I’m not running a fever and I don’t have a cold. I just felt tired and worn out. My muscles ached more than usual and my legs and knees are killing me. Mom may have Alzheimer’s, but she can certainly pick up on my emotions no matter how hard I try to hide them. She knew I wasn’t feeling well and she kept asking me if there was anything she could do for me. I didn’t have the heart to tell her that if she would sleep all night long it would make a world of difference in my longevity.

By the end of the week, I still wasn’t feeling any better. Thursday I just curled up on the couch and slept after taking Mom to day care. Two and I watched a movie and I trudged through the day as if I were a zombie. The weather report showed an ice storm coming through and we were supposed to get hit after midnight. Two and I prepared for not having the day together on Friday.

Friday morning I got up at the usual time. I went downstairs, let Mom’s dog out and he slid off the porch and onto the sidewalk. The porch and sidewalk were solid ice. I got the salt out and sprinkled it over the porch and sidewalk and tested the gravel drive with my foot. It was like an ice rink. These pictures don't show the ice as well as I would have liked. The bushes, power lines, absolutely everything was iced over. Nothing like you guys had in the northwest and central part of the states last month, but still scary on this hill just the same.




I called the day care and they said they were open but I had to tell them that Mom wouldn’t be coming in because we couldn’t get off our hill.

I’ll drive in a foot of snow on Mom’s driveway, but there is no way I’ll drive on ice. You’ve seen pictures of my Mom’s driveway. It’s steep and winding. It’s a beautiful site when the leaves are changing colors and the sun is shining through the clouds, but there’s no way to stop on ice, unless of course you want to slide over the 50+-foot embankment and crash to the bottom. Nope. Not me. When it’s ice, I stay home—and so does Mom.

The ice didn’t thaw from the porch, the sidewalk, the drive, the power lines, and the trees until 4:00 Friday afternoon. Then everything that thawed on Friday froze overnight and left an icy mess this morning, too. I think we may get out of here on Monday morning as long as it doesn’t rain and freeze again.

Am I wishing for spring? You’re darn right I am!

Back to reading and writing my book reviews.

BOOK REVIEW: An Uncertain Inheritance: Writer’s on Caring for Family edited by Nell Casey

An Uncertain Inheritance: Writer’s on Caring for Family
Edited By Nell Casey
William Morrow/Harper Collins(November 13, 2007)
304 pp Hardcover
Nonfiction: Parenting/Families/Aging/Caregiving
ISBN-10: 0060875305
ISBN-13: 978-0060875305
Amazon Price: $16.47

As a writer and sole caregiver for my 84-year-old mother who has Alzheimer’s, An Uncertain Inheritance: Writer’s on Caring for Family, edited by Nell Casey piqued my interest.

Writers produced the 19 essays gathered for this book, but more importantly, these essays were written by caregivers and those being cared for themselves with a no-holds-barred brutal honesty.

Under my currant circumstances, I thought this book might bring me to tears with each story, but I was wrong. It’s the powerful honesty, written eloquently in all its vulnerability, that will grab your heart, reduce you to tears, cause you to chuckle, and in some cases infuriate you, as it did me.

These stories weren’t fiction fantasies or pretty pictures of caregivers being selfless martyrs, as some may think, and the patients weren’t patiently waiting to die; these were true accounts of people — parents, children, spouses, friends, and siblings — who while living life, being all they could be, were stricken with illness or injury and needed help.

Caregiving for the chronically or critically ill is not a pretty subject. These writers opened their homes, hearts, and minds and let out every ounce of love, fear, frustration, and anger and shared the trials and tribulations they felt during their caregiving journey.

Each essay had its own merits, story, and sense of need.
Helen Schuman in her essay, My Father the Garbage Head, writes with poignant, heartwarming honesty of her father’s heart attack and strokes which led to his death.

Sam Lipsyte, in The Gift speaks openly and humorously about his drug abuse, how it wrecked his life, and while he “cleaned up his act” his mother let him move back in. Shortly after, his mother tells him and his sister that her breast cancer had recurred. He handled the news with a matter-of-fact acceptance that he would be her caregiver.

I was sort of relieved when I realized it was going to be me. Why knock yourself out trying to resuscitate your life when you can cling to somebody else’s. (12)

Ann Harleman’s My Other Husband describes her husband’s illness and the grueling bleakness and burden of MS.

MS is something that goes on happening—growing, changing, worsening—measurable not in weeks, months, or even years, but in decades. Something huge and black that descends slowly and inexorably and surrounds you. (21)

Her heartfelt love showed in each of the slices of their life she describes before MS took over. Her friend told her, “With chronic illness, a lot of times the caregiver ends up dying first. Out of stress and exhaustion. I’ve seen it.” (28) After years, frustrated and worn, she finally decided to place him in a nursing home “for his sake and hers.”

Eleanor Cooney’s essay Death in Slow Motion was formed from a former Harper’s Magazine article and later became a book under the same name. The eloquently written story is about her mother, writer Mary Draper, and her decline with Alzheimer’s Disease.

Cooney shoots from the hip with her openness of dealing with Alzheimer’s and the dilemmas and life interruptions her and her mate dealt with after moving her mother into an apartment close to their home. After just a few short months of her mother’s arrival, Cooney finds herself in an argument with her mate, who bolts out of the house to clear the air, and she stands in the dark with her “heart pounding with fury, sorrow, anguish.” (120)

She speaks of her mother’s lack of memory, repetitive conversations, questions, and how people with dementia “become unappetizing.”

They don’t bathe unless you make them…You will begin to find a person you love…odious. And you will hate yourself for feeling it. (126)

Susan Lehman, in Don’t Worry. It’s Not An Emergency tells a grim, yet capturing story of her nearly 300-pound mother, who spoke with a “thunder” voice, or “blast,” sat and ate sorbet, doughnuts, huge amounts of candy, and smoked cigarettes all day. Lehman moved her mother from her home in Ohio to live on the 8th floor of her apartment building so she could keep a closer watch on her. Her three children adored their grandmother and visit her daily.

The story of her mother’s illness is not the least bit funny, but Lehman manages to spin the tale with utmost charm and humor.

Did I mention that my mother had no teeth? And that as a result, her mouth flapped back and forth, like bird wings, over her face? Did I mention that my children called her Doodles? (167)

In the Land of Little Girls Ann Hood’s 36 hour experience with her 5-year-old’s illness and quick death was appalling in many ways. Hood describes not only the illness and death, but also her devastation at Gracie’s death and the horrible treatment she and her family were subjected to in the hospital.

An Uncertain Inheritance may never become a best seller due to the subject matter, but it should be a book that each and every human being should read and realize the reality it speaks about; they too may face the need to be cared for, or need to care for someone else. I only hope the readers have families like these who take that responsibility seriously regardless of time-consuming needs, the love, the fear, the frustration, the anger, and the rejection that may be a result from it.

Click HERE to purchase An Uncertain Inheritance: Writer’s on Caring for Family.

Oatmeal and Dogs Don’t Mix

Or at least they shouldn’t!

I’ve had my hands full this past week going through files getting everything ready to prepare taxes. I should have known better than to try to do anything remotely time consuming while Mom was still up and awake. It just goes to prove that even though you “think” you know all there is to know about the sounds of the house, walker, Mom, and the dog, there is always a sound you don’t hear or one you haven’t heard before.

I was upstairs sitting on the floor in the midst of a pile of paperwork when I heard Mom’s walker rolling along the carpet. No problem. She was heading to the kitchen most likely to get a drink of water. Correct. I heard the water running. Then, I heard her say, “I’ll let you out in a minute.” Heard the door open next and her cussing because she was having a hard time getting the dog hooked to the chain on the porch. Less than a minute later, the dog’s tags on his collar are tingling, the door closes, and he starts barking, so I know he’s back inside. The reason I know this is because her dog only barks when someone comes in the door and he barks at the door after it’s closed. Strange, I know, but he’s done this for as long as I can remember.

Next I heard this strange sound I hadn’t heard through the monitor before. I had no idea what it was so I figured I’d better go check out what was going on.

Mom was in the dining room and headed for the living room by the time I got up off the floor and made it down the steps. I asked her if she needed anything and she said no and was very proud of herself for letting the dog out to do its business.

Two Feather was on his way down to get the mail, so I headed for the bathroom before he had a chance to come back up the hill.

You’re going to love this one.

When I went into the kitchen to let Two Feather in, I noticed a powdery substance in the dog’s dish. I looked closer and realized it was oatmeal. I turned around and saw an empty package of instant oatmeal on the kitchen counter. Once again I was brought to tears from laughing. I realized the sound I’d heard earlier was Mom laying the dog’s dish on the counter and back onto the floor. She hasn’t fed her dog for the past three years so naturally it wasn’t a sound I’d heard in a long while. With Alzheimer’s we can never be certain what is on our loved one’s mind. I’m not sure if she was thinking she was feeding him or giving him a “good boy” treat for going potty, but either way, he got oatmeal. ROFL

Guess I don’t need to tell you what else I hand my hands full with for the next two days. :)

Hint: Don’t give dogs oatmeal for dinner or a treat. It cleans them out as well as it does we humans. LOL

Anyway, in between getting paperwork sorted, and cleaning up dog doo-doo, I’ve been working on getting my “to be read” pile of books down to a more reasonable level. I’ve become so far behind. I send my apologies to the authors. I may be a bit behind, but I am reading in the order received and will complete them and give each book the attention it deserves.

So, anyone who’s not interested in books, you may want to skip the next few posts. Yes, I’m at it again—book reviews!

Thanks For Making Me Laugh

It seems like weeks since I’ve posted and it’s only been five days. Good grief, where do I begin. Friday I still wasn’t feeling well so the day dragged on. I called Stacey’s cell phone and found out that she hadn’t called after the tornado scare because Trinity had spilled orange juice on her cell phone. She was able to retrieve messages but she couldn't make calls and calls wouldn’t go through. Thank you all for your concern for her and her family. As you already know from her post, they are all fine.

Late Friday evening my mom’s neighbor, Mrs. Y. called to let us know Mrs. E. (her mother) passed away. After I hung up, I cried. Mrs. E. was one of the sweetest ladies I’ve ever known. I never heard her say a bad word about anyone in the 55 years I knew her. She was able to enjoy many of her family members coming in to visit and celebrate her 102nd birthday the Saturday before her death. I’ll miss seeing Mrs. E. outside in the yard and waiving to her and her son, Billy, as we drive up the driveway past their house to Mom’s. She always said, “the good lord lets me live to take care of Billy.” I imagine Billy will move in with Mrs. Y. so she can care for him now. I have the utmost respect for her entire family. Daughter, grandchildren, and great grandchildren pitched in to help in the care of Mrs. E. There was an abundance of selfless people who gave of their time and love to show this 102-year-old woman the respect she deserved. I’m sure she left this earth knowing that she had a wonderful family.

Saturday morning I woke up Mom, got her washed and dressed, and made her breakfast. After she ate and was settled in her chair in the living room, I broke the news to her about Mrs. E. I didn’t think it would be easy, but I certainly didn’t expect what took place. First I had to explain who called. She didn’t recognize her neighbor’s name. After explaining that Mrs. Y. called and who Mrs. Y is, I proceeded to tell her that Mrs. Y’s mother died, and had to remind her that Mrs. E. was the other neighbor on our driveway. I felt like I was in the Twilight Zone trying to explain who her neighbors were, just to let her know one of them had passed away. If Mom didn’t have Alzheimer’s she would have been in tears about Mrs. E’s death—after all, she had been neighbors with her for 50 years—but this disease steals so much memory and emotion from our loved ones, it’s difficult to tell how they will react. Her reaction was far from what I’d expected. She merely said, “That’s a shame. She was old, wasn’t she?” A few minutes later she said, “That’s strange. You don’t think about death until it’s next door.” That was it! No emotion. No tears. No memory.

Sunday morning the lady from Mom’s church came to give her communion. Angel, Tim, and Katie came to visit around 11:15 as the lady was leaving. They stayed until 12:30. At 1:30 my brother, Ray, came to visit.

As I walked upstairs after getting a cup of coffee from the kitchen, I heard Mom tell Ray about a lady who visited yesterday (it was actually that morning) and how nice this lady was. She said something about her talking a lot and trying to sell her something (Avon maybe) but she just listened and didn’t buy anything. Later I heard her say that the lady comes every six months or so, then it was every couple weeks, and she buys all sorts of nice things from her.

I stay upstairs in my room while my brother visits, but when I come down to get something to drink or use the bathroom, I caught bits and pieces of her conversation, and Ray talks loud so it’s difficult not to hear some of what he says.

After about 45 minutes, I went downstairs to get Mom a cup of tea and was invited to sit with them in the living room.

I had to laugh at a few things I heard, though. Ray asked Mom if she had candy in her mouth. She said, “No, I got a new plate and it’s bothering me.” She told him she got it from someone other than her regular dentist about three weeks ago.

Ray doesn't come around Mom often enough to know she’s picked up a few new odd habits. One is running her tongue across the top of her plate and the back of her teeth. She does it all the time. Her mouth moves as she does this and she does look like she has something in her mouth. Her other little odd habit is her making a “humph” sound all the time. When she’d mumbled “humph” before Alzheimer’s, there was something on her mind that she was about to say, and I could expect an explanation for the sound she’d made. Normally, it was just something she thought of and wanted to tell me. Now, she just says, “humph” and nothing follows except another “humph.”

I don’t consider this a habit, but it is something I find quite fascinating about Mom having Alzheimer’s. When Mom can’t search her brain and find a reasonable and true answer to a question she’s asked, she’ll make up an answer. :D

So with that in mind, no, Mom didn’t go to a different dentist and she didn’t get a new plate, the nice lady who came Sunday morning was from the church to give her communion and she doesn’t sell Avon, Mom doesn’t read anymore because she’s not comprehending what she reads, she doesn’t crochet, she doesn’t watch TV at 6:00 PM because she's normally asleep by 5:30, and the dogs she says she sees in the yard are really deer.

There was very little of what Mom said that was real. She did remember that Mrs. E. had died and point blank said, “Oh, she’s dead,” when Ray asked how Mrs. E. was doing. That, and the fact that Mom likes to color, is about the only thing that came out of Mom’s mouth that was reality.

The funniest part about the entire day was when Mom and I were talking about the day before she went to bed. As I dress her for bed, I always talk about what we did all day to help remind her of what went on. Not that it does any good anymore, but it gives us something to talk about and she enjoys hearing how her day went.

I told her that the lady from the church doesn’t sell Avon, and the deer in the yard aren’t dogs. She laughed when I told her that is what she told Ray. What was truly hilarious was when I told her that she did tell Ray a few things that really happened. She asked me what she said. I said, “You remembered that Mrs. E. died and you told him you love to color.” She looked at me with this surprised look and said, “I like to color? Really?”

I couldn’t keep from laughing. Once again Mom went to bed after a hardy laugh about how this crazy disease gives us a little humor. I bent down to give her a kiss and tuck her in and she said, “Thanks for making me laugh.”

Hey Watching You, pass the word on to Ray. Just want to make sure everyone knows the reality of Alzheimer's. You can't always believe what our loved ones say is real.

Power Outage and No Day Care

When I pulled up to the day care this morning, there were no lights on inside. Evidently, high winds intermittently knocked down trees and power lines and the day care was within that power outage. They were on the phone calling to find out how soon power would be restored when we walked in. Their battery emergency power unit kicked in so there was heat and emergency lighting. I had second thoughts of leaving her, but figured Duquesne Light would have them up and running in no time being that they are a care facility. Well, that time didn’t come. I received a call at 9:00 requesting me to pick up Mom because Duquesne Light told them they probably wouldn’t have the power back on until 6:00 PM. The day care’s battery power died after two hours and they had no way to make breakfast or lunch and the building went dark when the emergency lights went out, so they called everyone and requested them to pick up their loved ones.

I wasn’t feeling well when I got up this morning and was looking forward to getting a few hours sleep. If I felt better, I was going to suggest that Two and I go out and do something—bowling, movie, anything to get out of the house and do something different. After I received the call to pick up Mom, I burst into tears—not because I had to pick her up, but because I realized how much I cherish my time with Two and because I realized how totally exhausted I’ve become. The way I was feeling, the last thing I wanted and needed to do was jump back into the car and drive. I needed rest—even if that rest was only to lie on the couch and relax.

It was strange walking into the building when I picked up Mom. There wasn’t the normal hum of conversation, chairs moving, and faces glancing toward the door to see who was being picked up first. The room was dark and quiet. I was filled with an uncomfortable and eerie feeling seeing only the silhouettes of all the clients huddled at the one large table in the front of the room waiting for their loved one’s to show up. The usual smiles were replaced with worried lines and wonder. I could hear one of the caregivers reassure a client that their loved one would be there soon and s/he wouldn’t be stuck there in the dark. I could only imagine how strange and frightening the stillness and darkness felt to them.

Naturally any change in our loved one’s routine muddles their thoughts, so when Mom walked in the house she wasn’t sure where she was; yet she headed straight for the bedroom to change clothes because that is normally what she does. I guided her away from the bedroom and into the living room to sit in her chair explaining that it was only 10:00 AM and we had the whole day ahead of us.

And indeed we did! My head was throbbing, my stomach and chest felt as if someone had beaten me with a baseball bat, my legs felt like rubber, and Mom was all ready to go to day care. She didn’t remember that she had been there and sent home because the electric was out, so we went through the “what day is this?” and “do I go to club tomorrow?” questions all day. Each time, I explained that she was at club for a few hours, but the power was out, so they sent everyone home, and she would go back tomorrow.

Mom knew I wasn’t feeling well, so after lunch she sat in her chair in the living room and colored while I stretched out on the couch where she could see that I was resting and knew I was OK.

After she was in bed for the evening and I knew she was sleeping, I went upstairs and fell asleep across the bed and hence a later post. Three hours rest and I’m going back for more. Night all...

Just Another AD Sunday

It’s Sunday! Just another AD Sunday on our little mountain. Though I repeated that today is Sunday numerous times, as I knew I would, and was able to tell Mom that she goes to “club” tomorrow, she wasn’t anything like she was yesterday. Today, she talked all day about her mom and dad and my dad. She told me stories that I’d heard years ago and I sat listening to her tell them as if it were the first time I’d heard them.

The last time I heard her tell those types of stories was five or six years ago. I was amazed at how she was able to recall the detail from those stories. If I didn’t know she had Alzheimer’s I certainly wouldn’t suspect it from her recall today. Her trip down memory lane was as spot on as the first time I’d heard the tales when I was a child.

I’m always amazed at how Alzheimer’s plays with our loved one’s mind. One day or moment it allows shards of light from the past, and another day or moment it steals every memory they have. It’s truly a mind-boggling puzzle to we caregivers never knowing what may or may not be in or on their minds. It’s scary. I can only imagine how it must feel for them.

The more I thought about it, the more I wondered if I may have short circuited those plaques and tangles in her brain with the short stories I read to her yesterday. She may not have recalled anything of what I was reading, but I wondered if it triggered her to remember her childhood and earlier years. I think it did because she hasn’t talked about her mom and dad in several years.

It was good feeling that I may have triggered some fond memories for her from her past in a round about way. I never knew her mom; she died before I was even thought of, but I’d always felt like I knew her from the stories my mom told me about her. Mom talked about when she first started dating Dad, and I had to button my lip to keep from finishing the story. I knew exactly what she’d told me before; I knew the story by heart, and today the story came out exactly as she once told it. Today, as she used to before, Mom spoke of her mother with such admiration. She started to tear up as she spoke of her and said, “She was such a lady.”

Mom said she wished I would have had the chance to know her mother and I said I wished I had, too. Then I said, “Mom, if she was half the lady you are, then I guess I know her through you.” Mom smiled and then laughed a long, hard belly laugh and said, “I’m not near the lady she was. I don’t hold a candle to her.”

“That’s funny,” I said. “I feel the same way. I’m not near the lady you are and I’ll never hold a candle to you.”

Mom got up out of her chair, pushed her walker over to me, hugged me, and kissed me on the cheek.

“You are my candle,” she said.

How do you respond to a compliment like that other than to say, “Thank you, Mom! I love you.”



*** I would have ended this post with that wonderful ending, but…

This little candle’s flame is nearly flickering out with all the imaginary visits from Mr. N. lately. Four times since 7:00 I’ve had to go downstairs and guide Mom back to bed after her thinking Mr. N. was in the living room. I asked Mom what she would do if Mr. N. were here? This is the part where I think I needed the walker to hold me up and keep my balance. She said, “I’d bring him back here in my room and take him to bed with me.”

Oh boy! Am I going to have fun tonight! ROFL This is getting to be a bit awkward.

As I explained to her that Mr. N. was not in the house and she should get some sleep, she looked at me strangely. Before I had the covers pulled up and tucked her in, she asked, “Who’s this Mr. N. guy you’re talking about?”

I burst out laughing and she laughed, too, as I said, “We’ll talk about it tomorrow, Mom. Let’s get some sleep.”



Here’s hoping. :D


PS. Oh, yes, I can't go without mentioning my mom's and my neighbor turned 102 today!
Happy Birthday Mrs. E.

Whatevers, Whatchamacallits, Dohickies, and What Day Is It?

From the moment Mom woke up this morning I knew she wasn’t going to have a good day. It always throws her off a bit on Saturday morning when she doesn’t go to day care, but this morning she was a bit more off than usual. She couldn’t figure out what clothes were what or how to put them on. This is normal lately, but today she couldn’t pull up the words for pants, shirt, socks, or shoes. They were all “whatevers,” “whatchamacallits, and “dohickies.”

After I got her dressed, I walked with her to her dresser and told her to comb her hair. I went into the kitchen to get her pills, juice, and breakfast together. When I went back into her bedroom, she still hadn’t combed her hair. She was standing in front of the dresser just staring at the things on top of it. I finally got her to comb her hair, and then she had to go to the bathroom. She was wandering around the house as if she was lost—couldn’t find the bathroom, and couldn’t remember how to get from the bathroom back to the kitchen. After breakfast, (she ate very little) I got her settled in her chair in the living room and put her coloring book and crayons on her table in front of her. She just stared at them for a moment, not interested in them, and leaned back in her chair.

Since she was having a particularly bad morning, I gathered all the bills, stamps, envelopes, and checkbooks and took them downstairs to the living room and set them on the table in front of my chair so I could write out checks for bills and keep her company at the same time. Big mistake. I wasn’t able to concentrate on the bills and repeat answers to questions at the same time. If I’m not looking directly at her while I’m talking, she gets angry and thinks I’m not paying attention. This is why I normally do all the paperwork upstairs in my room, but because she was having an off day, I thought I should be close to her. I ended up taking all the paperwork back upstairs to do later after she was in bed and I brought down the book for which I was reading to write a book review. She wasn’t in the mood to color or talk much, so I figured I’d read the book to her. She didn’t look like she had an inkling as to what I was reading, but she smiled as I read to her and asked if it was a book I wrote and wondered if she had a copy. I said, “I wish, Mom, my books haven’t even been submitted yet. But someday I’d do that.”

This is where she blew my mind. She asked me to stop reading the book I was reading and asked me to get one of my books and read it to her. She was never a horror fan, so those weren’t appropriate. Three of my six novels are horror, so they were out. Two of the six weren’t appropriate because of subject matter and that left me with only two other choices: read the romance novel that I co-authored with my friend, or read the humorous short stories I wrote about living on the farm with her and dad. I chose the short stories.

It’s been years since I wrote those stories and quite frankly I’d forgotten what I’d written. She didn’t associate that the stories were written about Dad, her, and me. She didn’t realize that those stories were true. They didn’t bring back one single memory for her. They were just stories about some little girl who helped her father and mother on the farm. As I read, she did laugh at all the right places, though. That made up for her not really knowing they were true stories about us. I’d written them as children’s stories for a series of children’s books. The way I see it, Alzheimer’s takes our loved ones back to being childlike. Since she found humor where the humor was meant, then I’d say I might have a pretty darn good chance of getting these little stories published as children’s books one day. There’s a bit of food for thought. I think, when the mood strikes, I’ll start sketching the illustrations for them as well. Maybe I’ll put that on my list of things to do for 2008. While I’m at it, I may as well work on my final edit of my novels, and try to put together a book proposal for each one.

But first…I’ll finish my book reviews. A few will be posted shortly.

By the way, Betsy, I haven’t missed an evening writing in my journal. (I do have a running journal of the three years I’ve been here with Mom.) This one, though, is just for me. ;)

The rest of the day and early evening wasn’t much better than the morning. Mom was confused all day. She ate very little lunch and dinner and couldn’t wait to go to bed to get up in the morning to go to club. I felt so bad for her that she couldn’t remember that today is Saturday. She probably asked me more than 40 times today “is tomorrow Monday?” or “what day is it?” and each time she was disappointed when I showed her the calendar and told her tomorrow is Sunday. Even marking the days off on the calendar doesn’t help anymore.

It was a strange day all the way around. She kept telling me she felt warm. Mom never “feels” warm! She always says she’s cold and when I touch her she feels warm to me. She used to always ask everyone if they were cold, too. When my dad would hear her say she was cold, he’d always say to me, “Joanne, go get your sweater on, your mother’s cold.” It was a standing joke in the house.

Tonight, when I kissed her before I turned her light out, her cheeks and forehead felt cool, yet she was still telling me how toasty warm she felt. Odd. Just odd.

Well, tomorrow is Sunday and I’m prepared to answer the same questions over and over. Good thing is…tomorrow I can tell her tomorrow is Monday. :D

2008--I Wish For Strength

One of my caregiver friends, Lori, is hoping for a better year. She hopes 2008 will be “her” year; A year of renewed life without pain, fear, tears, and hope of better things in her life. I wish that for her, too.

A writer friend of mine, Keith, asked what everyone had planned for New Year’s Eve. Keith said he stays at home, alone, and reflects on the past year and his life. He listed numerous questions that he asks himself each year to complete his day of reflection and those questions—extremely well thought out and excellent for reflecting on one’s life—really struck a chord with me. Not a bad chord in the respect that there was anything wrong with the questions, but in the respect that I felt worthless, hopeless, and lost when I reflected on those questions and answered them honestly.

Some of his questions were:
“What have I done with the year? Which goals did I accomplish and which ones didn’t I and why not? What am I willing to change about myself to accomplish those things? Am I living the life I want to live? Am I enjoying what I’m doing or did I just fall into it or am I living deliberately and on purpose or am I just taking everything as it happens and coping with it all? What’s been holding me back and how can I change it? What more could I do? Have other people’s needs and urgencies enveloped me to the point that mine, and my families, come second?”

These were just a few of some fifty questions he asks himself. The remaining questions were even more thought provoking, more deeply centered, and more heart wrenching to answer.

I haven’t done anything this past year for myself and I’ve given up any goals I’ve wanted to accomplish. I’m not living for me. I’m living for my mom, and her needs and urgencies have enveloped me to the point that mine, and my families have come second.

My life, this past year and the two before that, has been centered on Mom. That’s not saying that I would change it or want to change it; it’s just saying that I have concentrated so deeply on keeping her healthy and comfortable that my life has become unhealthy and uncomfortable. There is no life besides what I do with and for Mom. My life, as I knew it, has become nonexistent.

A feeling of worthlessness struck me head-on when I realized that even though Mom is doing fine, I’ve failed. I’ve failed Two Feather, my daughters, and my grandchildren. I’ve even failed myself. I’ve not been there for them during times they needed me most. I’ve not done things I would normally do and I’ve not lived life the way I would normally live. I’ve failed everything and everyone, except Mom.

My life is and has been hanging in the darkness of a disease called Alzheimer’s and, with each day, I hang on deliberately, yet I take everything as it happens and cope with it all. I cope with the explicit purpose that Mom lives on—only to die a horrible death. I feel worthless because nothing I’m doing will change the outcome.

As I reflect on this past year, there are probably many things I could have changed that would have given me and my family more time, more joys, and more life to live with each other, but had I changed what I’d done, I would have felt selfish. Nothing in this care giving role has ever been about me and never have I done anything for myself. I suppose I could change things in the upcoming year and think of my health, my family, and myself. I suppose I could take a long look at what I’ve done and what I haven’t done and try to decide whether or not it was all worth it. I suppose I could take my life back. But would that be me?

Someday, I’ll sit with Keith’s list of questions and answer them with myself in mind and maybe I’ll find answers that make me realize I’ve done something good. Someday, I’ll make plans and set goals for myself, once again, and no doubt accomplish them. Someday, I’ll live the life I’ve dreamed of, and do the things I’ve thought of doing. Someday. Someday when Mom’s life is complete. The last three years weren’t the years to do that. And 2008 probably won’t be either.

I can’t say that I wish myself a better year next year. There is no better with Alzheimer’s. Death may be better than the pain and suffering that will ensue. But I’ll not wish for death. I know when Alzheimer’s takes Mom I’ll still feel worthless and hopelessly lost.

Have I lived my dreams or done what I’d really like to do? No, not really. I was just starting to do that before I moved in with Mom. I’ve put Mom in front of everything and everyone, including myself. Yes, I’d like to be sleeping in my own bed, living in my own house with Two Feather, spending time with my daughters and grandchildren anytime I feel like it, and submitting and writing my novels. Hell, I’d just like to be writing again. Other than this stupid blog, I don’t even write anymore. I’d like to be getting on with my life, living my life, and accomplishing all the goals I set for myself back in 2004, but my life is on hold. I’m feeling worthless and lost—waiting for a hopeless and dreadful end—giving Mom love and the comfort of her home in her remaining time on this earth.

As I sit looking at Keith’s list of questions, I feel a mixture of emotions take over and I wonder when my someday comes if I’ll still feel as worthless and hopelessly lost as I do now. Someday, I’ll have those answers, and my life. Just not right now.

Right now, and for at least the beginning of 2008, the only plan I have is to continue doing what I’m doing and do the best I can for as long as I have left in me. Worthless as that plan may sound, it’s all I know to do.

Have I done what I planned for 2007? Have I accomplished my goal? Yes, I have. Mom is still with us. I guess I can’t think of any better way to start a new year than that.

Whatever 2008 may bring, I’m sure I’ll cope with it as it comes. They say whatever doesn’t kill you makes you stronger. Whatever comes, I wish for strength.

Happy New Year, everyone. I wish you strength, too.

To Cinnamin

We’ve all been lighting candles for the past few weeks for Cinnamin’s mom. Last night between 12:30 and 1:00 AM Cin lost her Mom to Alzheimer’s.

You were an angel to your mom, Cin. You’re a wonderful daughter. Hugs for the strength and courage you showed through this journey.

Know that you and your family are in my thoughts and prayers during this difficult time.

Thinking Too Much and Loving All Of You

Lately I’ve been thinking far too much. Thinking can get me in trouble and opening my mouth about what I think gets me into much more trouble than just thinking. Many of my caregiver friends have lost their loved ones to Alzheimer’s and now they are grieving their loss and trying to find a new purpose in life. They are very special to me. They came into my life when I didn’t know where else to turn and became my friends and became family. They are so fragile right now; I worry about all of them.

Betsy, Lori, Nancy, Flinty, and Stef, I watch, read, and listen to all of you and my heart breaks each day for you, wondering if you’re all okay and how you’re holding up.

Flinty makes me think even more than I do already with his deep and thought-provoking posts. I like that! Stef makes me think about when I was her age and how I handled situations and I find she’s very mature for her age. Betsy, Nancy, and Lori always come around to support everyone sharing their thoughts and advice, and no matter how down they may feel, they always seem to add a touch of humor. I just want to thank all of you for being the kind, caring, considerate, and loving people you are.

Here we were, a group of caregivers, all fragile in our own little way, who came together to cheer each other on, give support, and help guide each other in the right direction, and we all found that there is no “right” direction—except move forward moment by moment. We did find each other, and what we found was a group of people who know how to care, know how to love, and know how to give of themselves when there seems to be nothing left to give.

I wish I could comfort each and every one of you personally because I’ve grown so fond of you, your words, your lives, and your strength.

Strength is something I thought I was full of, but I’m finding more strength from everyone’s caring and loving words than I find in myself. Now, I just think I’m full…of what, I don’t know. You can fill in the blank however you see fit. :)

I find strength from Rick’s posts as well. He makes me laugh when I least expect it and his comments are sometimes hilarious and sometimes touching. No matter which they are, they always seem to fit for the mood I’m in at the moment. Thank you for that, Rick. You’re a great guy and your mom is lucky to have you.

As for Gale and Dave, and those I may have missed—your loved ones are so very lucky to have you as well. Everyone’s posts are so thoughtful, caring, and loving. I guess I’m feeling a bit strange tonight because I’m thinking of all of you, all at once.

I think of Cinnamin right now, who is pacing, wondering, and worrying, and I know how hard that is for her—how hard it was for all of you. I did the same thing when my dad was near death. My heart breaks for all of you, yet my heart knows that you are going to get past this and continue to care, love, and give to those who are still close to you. Cin, my thoughts are with you and my candle is lit.

Tonight, I lit a candle for each and every one of you wonderful people. May the light that shines from those candles shed some brightness in your life and light the way to your dreams.

What I’d like to give to each and every one of you is my utmost respect. I can’t think of a better group of people who deserve it. I can only hope I’ve been there for you as you have all been there for me. Thank you for being you. I love you all!

Someone Took Over The Dance Floor

I didn’t get the presents wrapped as I planned after I logged off last night. Instead, I spent the evening, and most of the night, sitting in a chair by my mom’s bed calming her down. Apparently she was dreaming of this Mr. N., again. Not such sweet dreams this time, though. She was already to get dressed and go to “club” to fight the new lady who’s making moves on this guy. I guess this woman was dancing with Mr. N. in Mom’s dream and Mom wasn’t happy with how the whole dance went. “She shouldn’t be acting like that with him,” Mom said.

Mom’s totally forgotten that Mr. N. is married. She wouldn’t give him the time of day, other than friendly talk, if she didn’t have this mind-stealing disease Alzheimer’s. I told Mom it’s nice to have friends at club, but she can’t very well get angry at another woman when, in fact, Mr. N. shouldn’t be acting that way with either one of them because he’s married. That didn’t matter; according to Mom, the new woman is married, too. Mom has no concept of marriage anymore, either. Oh brother!

I finally got her calmed down when I said, “Mom, you’re 84, you’d look pretty silly fighting with another woman over a man.” I think some part of her “old self” snuck back into her head for a few seconds because she said, “yeah, I don’t want to make an ass of myself.” I’m not sure whether she thought she’d make an ass of herself because she was considering fighting, or because he is married. Either way, it was a long night. She was up every hour angry with this other woman who’s taking over the dance floor. On the brighter side of this whole night without sleep—she didn’t remember any of it in the morning.

It’s been a cold and blustery day. First it snowed, then it rained, then it snowed again. The ground is covered.

This morning when we ate breakfast, Mom mentioned how tired I looked and I simply said I didn’t sleep well. :) I didn’t mention anything of what went on during the night and I didn’t mention that there was a pot in the middle of the dining room floor catching water either. Yes, just one more thing to FIX. The house has a new roof, so I can’t imagine where the water is coming in. Must be a slow leak or loose flashing near the dormer. As soon as the temperature changed and it started snowing, the leak stopped and I was able to remove the pot before Mom got up. Guess we have a spot on the roof that will need fixed and a dining room ceiling that will need spackling and painted soon.

Mom colored in her coloring book for a good portion of the day. I sat in my chair near her in the living room trying to strike up a conversation. Even tried to get her to play with dominoes but she was having a difficult time with how that game goes. We ended up with tiles stretching from one end of the table to the other with no specific end. She won, though, because she was the first to use all her tiles. We colored together the rest of the afternoon until it was time for me to make dinner.

I watched the wind pick up snow and twirl it off the barn roof and blow it onto the ground. A chill went through me each time I looked out the window. As a writer, my imagination can sometimes make me literally feel the things I see. I’m looking forward to crawling under warm blankets tonight and hoping for a good night’s sleep. I hope that’s not in my writer’s imagination, too.

I Hate This Disease!

Mom received more Christmas cards today. One from my brother, Bob and his wife, one from my daughter, Angel and her family, one from Ardis, and one from Gale our GLO member. Thank you, Gale, Mom thought it was nice of you to send a card to someone you don’t know. :) Mom knew Angel and Tim but couldn’t remember Katie’s name even though it was on the card, she wasn’t sure who the other cards were from, so I went through the conversation again.

I watched her go through all the cards again today and she opened the new ones. She doesn’t bother to read them; she just looks to see who they are from and puts them down. I asked her if she knew what the cards were for and she said, “no.” When I told her they were Christmas cards, she said, “oh.” She does not even understand what Christmas is at this point. I knew it was coming, but that doesn't make it any easier. That's why I wanted everyone to come for Christmas two years ago.

My thoughts and prayers go out to all who have lost their loved ones and are going through a difficult time during this holiday season. I’ve lit a candle for all of you and also for those who are still caring and especially Cinnamin and her family who are so close to the end. Hugs to you all. Please know that I’m thinking of you.

Have I said I hate Alzheimer’s? I’m sure I have, at least a thousand times.

I HATE THIS DISEASE!!!!!

Alzheimer's Patients Still Have Feelings and Still Love

Retired Supreme Court justice Sandra Day O'Connor's husband has had Alzheimer’s for more than 17 years. Recently she moved him into an assisted living facility where he’s met and fallen in love with another Alzheimer’s patient.

In this article, “Forgetting long-time bonds, Alzheimer's patients fall in love” Rubin Dessel, head of memory care services at the Hebrew Home care facility in New York, said he “can't quantify how often this type of situation occurs, but it will continue to occur in greater number as the years go by.”

People with Alzheimer’s lose their memory day by day; they live moment-to-moment forgetting their past, their children, even their spouses.

Though Dessel can’t put a percentage on the incidence of Alzheimer’s patients forgetting their loved ones and moving on to another relationship, he is correct in stating that it does occur and will continue to occur.

Caring for a loved one with Alzheimer’s is heartbreaking in itself, and I applaud O’Connor’s love for her husband, which allows her to feel somewhat relieved seeing him happy and enjoying life with another woman. It takes selfless people to care more about someone else’s feelings than their own.

My mom is a widow of nearly 10 years. I feel that if I hadn’t stayed close by her after my dad died, she probably wouldn’t be around today. I kept her active. We went everywhere and did everything together. We went to homemakers together; seven to ten women my mother’s age, and me, thirty years younger, sat around tables in the community room above the police station for three to four hours once a month making crafts, eating lunch, and sharing conversation and memories. Why did I attend a monthly meeting with women so much older than me? Because my mom wanted me to be there; she enjoyed my company and wanted to share as much time with me as possible.

Then, together, Mom and I shopped for groceries, Christmas presents, went to lunch, the hairdresser, took bus tours, spent days cooking meals and cookies, and spent hours at each other’s homes just talking. She came to my house for dinner at least twice a week and we even took our dogs to the vet and to be groomed at the same time and scheduled our dentist appointments back to back.

She once told me that my brother told her she “needed to get out more and do things with friends” and my mom responded that she “did get out and do things and was happy spending time with me.” In return, she was told, “But she’s your daughter, not your friend.” Mom told me she was angry and hurt by his response and said, “Joanne may be my daughter, but she’s also my best friend.”

Now, Mom with Alzheimer’s spends the day at a day care facility where she gets her hair done once a month, has lunch and goes on outings with other clients, and I shop for groceries and presents and take the dogs for appointments without her.

What does all this have to do with Sandra Day O’Connor? Mom has an admirer at the day care; a bus brings Mr. N. to the facility while his wife goes off to work. Mom’s talked about him daily for the past year and giggles like a school girl when she talks about how they dance together every week when the ‘music man’ comes to play oldies from their era. When the caregivers at the facility first told me about the little romance, my heart broke because she had forgotten my dad, but I soon got over that when I saw how full of life and happy she seemed to be. When I saw them dance together at this summer’s family picnic, I cried, not because she forgot my dad, but because she was enjoying herself—life had meaning to her once again.

Mom and Mr. N. sat together occasionally and chatted since the first day I took her to day care. Those little chats have transformed into handholding and kisses on the cheek. He pulls her chair out for her and asks her constantly if she’s okay.

This past Thanksgiving weekend Mom woke up several times during the night and thought Mr. N. was in her house. She sat on the edge of the bed talking toward the doorway of her bedroom. When I heard her through the monitor I went downstairs to find out what she was talking about. She swore up and down that Mr. N. was there and she wouldn’t have invited him over if she thought he would have come so late. Five times she awoke each night saying the same thing. For three nights I told her she was dreaming and tucked her back into bed.

It was on Tuesday, my mom and dad’s anniversary, that the caregivers told me that my mom and Mr. N. talked about ‘going out’ to lunch or a movie and since neither of them can drive any longer, maybe ‘Mrs. N.’ could take them where they want to go. It all sounds so strange, and of course the date will never happen, but for the moment they are talking about it, they are happy.

I told the caregivers at the day care about my weekend with Mom and I joked, “If I had known this before Thanksgiving, I would have sent Mom home on the bus with Mr. N. over Thanksgiving weekend and let ‘Mrs. N.’ deal with Mom’s three-night long conversation with her husband.”

It wasn’t so cute at 4:00 AM when I was dealing with it, but now that I’ve had a chance to catch up on some sleep, I smile at the thought that my mom is acting like a school girl and is smitten by someone, who when I look at him closely, has many of my dad’s features. I’m not sure if ‘Mrs. N.’ feels as O’Connor does, but I’m happy for them. I’ll always be Mom’s daughter, but it looks like Mom has a new best friend—someone she enjoys being with, talking to, and spending her time with. My smile deepens, I’ll admit, when I think of my bother’s hurtful words to my mom years ago. I don’t think he could be so selfless to accept that Mom’s new best friend is a married man.

If we learn one thing as caregivers, we learn that our loved ones still have feelings and they still remember how to love. That may be the only good thing about this disease, as well.

Happy Anniversary, Mom and Dad!

Today would have been my mom and dad’s 66th wedding anniversary. Two years ago, when I mentioned the date, Mom was surprised when I said they would have been married 64 years. Last year and this year the date went by without me mentioning it, and without her realizing it. Dates and phone numbers seem to stick in my head. We always celebrated their anniversary at Thanksgiving every year. There won’t be any celebration this year, but I can at least remember for her.



This picture is a wood burning of my mom and dad’s wedding picture. When my daughter, Stacey, was in the Army stationed in Korea, she had it made for Mom and sent it to her for Christmas. Ever since, it's hung over the mantle of the fireplace my dad built in Mom's living room.

Happy Anniversary, Mom and Dad!

Since Thanksgiving I’m finding myself reminiscing more than I’d like to. I treasured the holidays when family used to gather together and I miss those times terribly. It seems since Dad died this family fell apart. Without Dad around, this family hasn’t been any fun and since Mom has had Alzheimer’s there’s no ‘family’ at all. Not in the real sense of the word anyway.

Family used to talk to each other and invite each other to their homes. That hasn’t happened, at least for me, since my dad died. I guess when Dad died, in the eyes of my brothers and nieces and nephew, I died too. No one had to bother with me, unless my mom pitched a fit because I was left out. It got to the point that I told her not to bother because I felt if they 'had to be told' to invite me, they didn't want me around. They made that perfectly clear over the years. The only person who seemed to care what was going on in my life was my mother (other than my daughters, Angel and Stacey, and my Uncle Joe). That used to bother me, a lot. But things have changed. Now...I couldn't care less.

Two years ago, I tried to plan a special Christmas for Mom. I invited both my brothers and told them to pass the invitation to all their family members to come home for Christmas. No one came except my daughters, their families, and Two Feather. Not even a call to say they weren't coming. All I got from the rest of the ‘so-called family’ was excuses, a hard time, and ridicule. For all intents and purposes, that is the last Christmas Mom remembers. That is, if you want to call a lot of prodding and picture showing to bring that memory back, remembering.

Normally, I put up the Christmas tree the day after Thanksgiving. It’s still neatly tucked away in the box in which it was packed in 2005 and is sitting in my mom’s basement. I’ll probably have Two Feather take my tree back to my house in the next week or so and have him toss it in the basement to be stored with all the other decorations I doubt I’ll bother with this year. I still haven’t pulled out Mom’s little tree that we used last year. Why bother. I used to love this time of year; now it’s just another day that will go by without Mom ‘really’ knowing what day it is.

Alzheimer’s is a cruel disease. It is taking Mom piece by piece and it is ripping me apart.

As much as I said I had so much to be thankful for at Thanksgiving, I’d just as soon pass on holidays from now on. I hate Alzheimer’s! I hate what it’s doing to my mom. And I hate what it’s doing to me.

No-bake Oatmeal Cookies

In an effort to keep Mom busy today we made no-bake cookies. Along with having Alzheimer's, Mom's a diabetic, too, so I substitute diabetic sweetener for the sugar. Of course since Mom can’t use the stove, I melted the butter and mixed all the ingredients that needed to be brought to a boil. When it came time to add the peanut butter and oatmeal I let Mom mix that all together.

Her coordination isn’t what it used to be so it took her a little longer to mix than it normally would have. She had a hard time scooping the cookie mix from the pot and getting it to the waxed paper before it dripped off the spoon. Watching her made me realize how much Mom is progressing with this awful disease. She ended up using her fingers more than the spoon, but all turned out pretty good.

She was so excited when she put the last of the mix on the waxed paper. She said, “I guess I did okay.”

“You did more than okay, Mom,” I said. “These cookies look great.”

She enjoyed making the cookies and was so proud that she was able to do something she hadn't done in many years.

“So when can we eat them?” she asked. I couldn’t help but laugh and when I did, she started laughing too. “We can eat them, can’t we?” she asked, giggling.

I assured her that as soon as they set for a while we could have a few cookies. She was so cute sitting there waiting for them to ‘set’. She kept poking one with a spoon to see if they had hardened enough to pick up to eat.


We waited about 15 minutes and she picked one up and ate it. “They’re good. I’m full,” she said. Mom’s appetite is getting less and less. Her being full after just one small cookie is evidence of that. The sweet tooth she used to have isn’t even working anymore.

I baked a steak in country gravy in the oven along with an acorn squash for dinner. She said it was good, but she ate very little of that too. Twice Blessed wrote in her blog about how people with Alzheimer’s lose weight no matter how well you try to provide them nourishment. That is so true. I guess it's just another part of the brain being impaired that causes the appetite loss. This disease whittles away at the mind and body. Mom weighed 168 pounds in August when she was in the hospital; now she weighs 150. It's heartbreaking to watch our loved ones waste away each day.

I thought I’d share the recipe for those who don’t have it, and for those who may need another idea to add to the list of activities for their loved ones. So here it is.

No-bake Oatmeal Cookies

1 stick of butter
½ cup of milk
2 cups of sugar (can be substituted with diabetic sweetener for diabetics)
5 Tablespoons of cocoa

Cook until it comes to a boil. Remove from heat.

Add and mix:
½ cup of peanut butter
3 cups of oatmeal

Mix together until smooth and creamy. With a teaspoon, spoon onto wax paper.
Wait 15 minutes and they’re ready to eat.

First Light of Day

"Restless Dawn" Short Fiction Contest

Jason had this great short fiction contest going on but I missed the deadline. Lately, more of my writing has been nonfiction and this picture was so inspiring, I thought I’d post what I’d written in the few minutes I had last night after Mom went to bed and before I fell asleep. It's not fiction, but at least I wrote something for a change.

P.S. I might add that I've never claimed to be much of a poet. :D

First Light of Day
by Joanne D. Kiggins

Each evening as the sun goes down and I tuck you into bed.
I wonder how your day has been and what goes through your head.
Each day keeps getting harder to keep you occupied.
Yet you find so much comfort with me by your side.

Your memory continues to fade with each passing day.
Still, the words “I love you” we always manage to say.
If I had one wish for you as Alzheimer’s takes your life.
It would be that you’re truly not aware of your daily strife.

I do not want to think of the day you won’t be around.
When the monitor’s turned off, replaced with silent sound.
Each night I say “I’ll see you in the morning” and then I go to pray.
Hoping that when I wake, you too will see the first light of day.

Furnace Fixed, Packing & Moving

Thursday went quickly. I called Tom to ask if the furnace part came in yet. He said it didn’t, but his supplier was taking the part off a new furnace so he could bring it out and install it later in the day. He called about fifteen minutes before I was ready to leave to pick up Mom. I told Mom on the way home that Tom would be at the house fixing the furnace when we got home. Two Feather came down and talked with Tom while he worked and until I got back home with Mom. When Tom came upstairs to go outside to get a tool Mom wasn’t sure who he was. He said hello and went back downstairs to work. When he came back upstairs into the dining room to set the thermostat a few minutes later, Mom said I haven’t seen you in a long time, how are you and when did you grow that thing on your lip. He chuckled and said, I’ve had this mustache since I was in the military.

Two Feather left and went back home. While Tom worked on the furnace, I made Mom’s dinner and got her ready for bed. Tom left about 6:00 and the furnace was running. He said, I think it’s finally fixed. Nothing personal, but I hope I don’t hear from you until next year. We both laughed and I said, no offense taken, I hope not too.

The furnace ran its cycle, shut off after he left, and didn’t come back on. I felt bad that I had to call him again. He was in the middle of eating dinner when I called and said he’d come right over. When he came, he was prepared to tear the entire furnace apart all the way down to the fuel line. He knew the module he’d replaced was working so it had to be something else. He installed a new thermostat, took apart the fuel pump and cleaned the small fuel filter inside and put everything back together. The furnace ran a 40-minute cycle this time and the thermostat moved up to 70 degrees. He waited for the house to cool some and see if the furnace kicked back on by itself. Fifteen minutes later, it did. He was a bit paranoid because of all the problems, so he waited for it to run another cycle before he left. Once again the furnace came on by itself. Tom left about 8:00 satisfied that the problem was fixed. The furnace has been working ever since. YAY!!!

Angel came in and stayed with me for the night again because she had another appointment on Friday morning. She got in around 9:30 PM. She brought a birthday bag with presents in it. She drove in last Monday for another interview, and had the bag with her then thinking we might get together for lunch and give me my present early, but we weren’t able to get together because Two Feather and I had a business appointment. Anyway, she gave me a beautiful blue velour jogging suit and the newest Stephen King book. Of course, I loved both gifts. We sat upstairs and talked until 11:00.

Friday morning I woke up Mom and got her ready for the day and woke Angel up so she could get ready for her trip downtown. She was going to drive back to her house after her appointment and said she’d call when she got home.

Two Feather rode me down to Mom’s on the Mule and I packed up a lot of my books, writing files, and my summer clothes to take back to my house. I just don’t have enough room upstairs and I’m not making use of my writing files right now anyway. I figured I might as well start moving things back to my house.

I also packed up all his Indian art that I had in my room upstairs. We had been selling it online, but so much has changed with Mom, that I don’t have the time to devote to taking the pictures, writing the descriptions, packing everything, or running the items to the post office when they've sold. I feel bad about this, because Two Feather has given up everything to help me take care of Mom. He’s given up his way of life: going to powwows; setting up and selling his Indian art at powwows, craft shows, and flea markets; selling firewood. He’s given up absolutely everything to show respect to a woman whom he has no actual ties to. Why? Because he loves me and he loves my mom. And because he’s a respectful human being who lives by his Cherokee heritage. He’s a traditionalist and taking care of the elderly is part of their tradition.

He doesn’t whine or complain that our life has changed so much; he accepts it as part of the path we’re suppose to be on right now, and so do I. We’ll have no regrets about these years spent with Mom and we take pride in the fact that we’re here for her through every step of her journey with Alzheimer’s.

There was no doubt in my mind that I would take care of Mom if and when the time was needed. I’m proud to say I have a man who stands beside me and believes, as I do, in the same family values, honor, and respect due our elders. I think I’ll take my Mom’s advice from when she met him six years ago before Alzheimer’s, “Hang onto him. He’s a keeper. He’s a wonderful man.”

Yes he is, Mom, and he shows it every day!