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.

Alzheimer's -- Living Day by Day, Moment to Moment

In my last post, I showed you pictures of my daughter’s visit last weekend. Those were the good points of the visit; snap shots of family members who drive for hours to visit Mom and me once a month with hopes that she’ll remember them just a little bit longer.

With Alzheimer’s Disease you never know from one moment to the next what your loved one remembers, or what they don’t. You can only hope that each day as a caregiver you’ve made them comfortable, given them the loving support they need to live with dignity, and pray that when they wake in the morning, they remember who you are. And when the day comes that they ask, “Who are you?” you pray for the strength to hold back the tears and answer.

Even as often as my daughters Angel and Stacey visit, my mom didn’t recognize my daughter Stacey this past weekend. Mom watched her as she talked, spoke to her as if she knew her, then, she asked, “Do you have kids?” Stacey smiled, and without hesitation said, “Yes, two. My daughter, Trinity, is seven, and my son, Quenton, is two.” My heart ached for my daughter because Mom didn’t know her; my daughter’s heart ached for her grandmother’s memory loss, rather than for herself.

I’m proud of both my daughters, for understanding the disease, for taking the time out of their busy schedules and making it a point to travel four hours to visit, and for being the loving daughters and granddaughters they are.

It’s sad watching my mom’s mind fade. I see a piece of her slip away each day. I miss my mom; the vibrant happy woman who was always so excited to see her grandchildren and great-grandchildren visit; the woman who talked to me, mother to daughter, for hours; the woman who gave me life and loved me unconditionally. Yes, my mom is still here, but the person she was is gone.

She moves slower and slower each day. I dress her in the morning; get her situated in her chair at the kitchen table, talk to her while I make her breakfast, and watch her expressions to tell me what kind of day she will have. If she has difficulty finding her mouth with the utensils, I know she’s having a bad day. Though she’s overweight for her size, she’s not lost weight with her diminished appetite. She struggles to get out of her chair and I come to her aid. She ain’t heavy, she’s my mother.

Mom’s always tired by 4:00 PM, but I’ve noticed in the last week that she seems more exhausted than usual. Less talkative and less aware of her surroundings. The intermittent memories are no longer coming back to her. Out of sight, out of mind.

Yesterday morning we were sitting in the living room and I noticed her frown as her eyes scanned the many pictures on her bookshelf. I didn’t need to ask if she knew the people in the photographs. The wrinkles in her forehead told me she wondered who they were. I stood up, walked to the pictures, pulled them off the shelf, and took them to her. I handed her a photo of my dad. She knew Dad. The next two photos were of her grandson, his wife, and two daughters. She had no idea who they were. The next picture was of my brother, her oldest son, and his wife. She said they looked like someone she knew, but she didn’t know who they were. The next picture was of my second brother, her son, and his wife, but she didn’t know them either. The next picture was a four-generation picture taken five years ago with her, my two daughters, my granddaughter and me. She knew herself.

I placed the pictures back on the shelf and prayed for strength in handling the next stage of Alzheimer’s disease.

When my mom didn’t recognize my daughter last weekend, I thought Mom slipped to a new stage in the disease. When she didn’t recall the visit after a reminding prompt, I knew.

We moved from the living room to the kitchen for an early lunch. She looked around as she sat and said, “Dad built those cabinets. I remember because you told me he did.” I answered, “Yes, he did. He was a wonderful carpenter.”

I turned to smile at her and saw her eyes filled with tears and her chin quiver as she struggled to speak. “Was? You mean he’s gone? Did he pass away? When?” As she sobbed, I knelt next to her chair to comfort her. I held her, wishing I could do more than apologize for not realizing she didn’t remember he was gone. “I thought he was at work,” she said, as I dried her tears. My dad passed away nine years ago. Last week she remembered that. Today, she didn’t.

My brother called and said he was coming to visit. When he walked in the door, I knew she didn’t recognize him. I asked her if she knew who he was. She said “no”.

That was yesterday. Today was not better.

I woke up Mom as I normally do every morning, placed her clothes on the bed, and walked her to the bathroom. Before we made it to the bathroom door she began to sob uncontrollably. I sat her in the kitchen chair and asked her what was wrong. Her words shocked me. “I’m dying,” she said. My mom never speaks of death and if the subject is ever brought up, she changes it. For her to say she’s dying was an utter shock to me. “Why do you say that, Mom?” I asked. Her answer was short, quick, and heartbreaking. “Because I am. I can feel it, and I’m scared.”

I did the only thing I knew to do, hug her. And I responded with the first thing that came to my mind, my dad.

“Mom, don’t be afraid. When it’s your time, you’ll be with Dad again, and that’s something to look forward to.”

“You’re right,” she said. “I never thought of it like that.”

She dried her tears and we continued with our day; getting her shower, getting her dressed, and getting her breakfast. The day continued on a similar note with her watching me in the same way she watched my daughter last week. She talked, constantly asking questions; she asked about her house, how long she’s lived there, where was my husband and why doesn’t he stay here with her and me, and she asked if I’d be okay when she died.

“I’ll be okay, Mom. Don’t worry about me.”

As the day progressed, she regressed, and by 4:00 PM she was once again exhausted. She wanted to go to bed earlier than usual, and after the rough weekend we’d had, I was inclined to agree, so we started our bedtime routine.

Every night for the past three years my mom has said the same words to me as I dress her for bed. “Thank you, honey, for staying with me and taking care of me. You’re a wonderful daughter and I love you.”

Tonight, she didn’t say those words.

Tonight, she asked, “Who are you?”

I bit my lip, held back the tears and said, “I’m your daughter.”

Her eyes brightened and she gasped, “You’re my daughter. That’s wonderful!”

“Do you know my name?” I asked.

“No, will you tell me?”

“Joanne. My name is Joanne, Mom.”

“That’s a beautiful name. Did I give it to you?”

“Yes, Mom. You did.”

I hugged Mom, kissed her, and tucked her into bed as usual.

“I love you, Mom.”

“I love you, too. You’d better get some sleep. You’re going to need it,” she said.

“Good night. I’ll see you in the morning.”

“I don’t think so. Get some sleep. You’re going to need it,” she said again.
I kissed her forehead and walked out of her room repeating, “I love you, Mom. Good night. I’ll see you in the morning.”

Since then, for the past six hours, I’ve been sitting in my room upstairs, in deep thought-- a sort of stunned, dazed frame of mind. Each day for three years I’ve never known what the next day might bring. We’ve lived day by day, moment to moment, not knowing what the next moment might be like, but I’ve cherished every moment I’ve had with her.

I don’t know what tomorrow might bring, but with her strange discussions this weekend, I do know I’ll be staying close to her side, rather than listening to her breathing come through a baby monitor in my room.

For her sake, when it is her time, I pray she passes peacefully in her sleep. And when she does, I know she’ll be in a better place and she’ll be okay.

I didn’t have the heart to tell her, I won’t.

Good night, Mom. I love you. I’ll see you in the morning.

Always Playing Catch Up

Just the other day I thought about my blog and wondered how long it had been since I updated. Life is so hectic taking care of Mom, I hadn’t realized it’s been nearly five months since I posted here. There hasn’t been a whole lot going on since February, so it shouldn’t take but a few moments to play catch up this time. March and April were filled with doctor’s appointments for Mom and me. She checked out great, health wise. And there are always the visits to the nursing home to see Uncle Joe. He’s adjusting well, eating much better, and even making a few friends there.

Saturday, May 12, I actually called in a home nurse to watch Mom for a few hours of respite care. Several of my online friends came into Pittsburgh to meet and I was able to spend a few hours with them. It was wonderful meeting everyone. I wish I would have had more time to spend with everyone.

It was great seeing Ray and Sara again. Little Finn is getting so big. Here are a few pictures of the gang.



Of course they had to catch me at my worst, or as some at AW would say, at my best when I’m being myself—outspoken and silly. Everyone, especially Ray, kept telling me I needed to eat more. I’d eaten all I could and decided to offer up the sticky buns to anyone who would have them.

Anyway, that explains me holding the sticky buns at Eat ‘N Park. Things are not always what they seem. LOL


May 26th was my granddaughter’s First Birthday party. Her birthday was May 16, and my daughter, Angel, made arrangements to hold the party at a local park to make it more convenient for all the relatives to share in the day. Katie had a great time eating the cake and smearing the icing on her face. Of course everything was so hectic with so many people there, we didn’t get any pictures of great-grandma and grandma with Katie. Yes, we took Mom to the party from 1-3. That was about all she could handle.

The rest of May and June sauntered by without too much going on. Angel and Stacey did visit again with the kids a few more times. They manage to visit Mom and me at least once a month.

And here it is July. No fireworks here. Nothing to celebrate really. Unless of course you can get excited like I do about watching the rabbits, squirrels, turkey, and deer play in the yard. We have three fawns this year. They jump and play and run too quickly for me to snap a picture. I really have to get some of the tree limbs trimmed so I can see them better.

Oh wait…there is something to celebrate! I quit smoking. I think it was on Friday the 13th, but who’s counting?

Well, that’s it for now. See you soon.

Happy Valentine’s Day to My Daughters

I know that Valentine’s Day is for sweethearts, but I can’t let this day go by without saying, “Happy Valentine’s Day” to my dear sweet daughters, Angel and Stacey. They are sweethearts in every sense of the word. I’m very proud to be their mother and even more proud to have such wonderful, caring, thoughtful, and loving daughters in my life.

Thank you for being you, and being there for me.

I love you both.

Mom