Wednesday, June 17, 2015

Eight Years

Eight years, yes, it has been eight years since my mom was diagnosed with Alzheimer’s disease.  That is a long frickin’ time to deal with a disease, especially one that likes to throw surprises at me. Just last week, it had another one.

Lately, when people have asked, “How is your mom doing?” I really am not sure what to answer. Most people are asking out of love and a bit of curiosity, but they probably don’t really want to hear the details. And I am not going to give them, at least not in this post. I want to focus on the miracles of the disease. So, here is the Reader’s Digest version of how things have been going lately.

My mom is in a wheel hair. Not the standard type, but a fancy one-a wheelchair that has a lot of padding and can recline. She doesn’t walk anymore. She needs help to be fed. She has to have supplemental shakes because she is losing too much weight and her two favorite words are “yea” and wow.” “Yea” seems to be her way of trying to be part of a conversation and have something to say or answer a question. “Wow” is a statement of excitement or her way of expressing that she really likes something.

These days, when I go to visit her, I do a number of things with her to pass the time. I tell her what is going on in my life. I let her know what the kids are up to, what sports they are playing or what their special interests are these days.  I talk about the weather outside, the holidays, or anything that I think she might find interesting or could possibly, by some miracle, understand.  I have a playlist of music I made for her and some days I play songs for her and sit back and watch her smile, and I listen to her try to sing. If there is music playing in the ward, I will sing to her and hold her hands and chair dance with her.

And I am lucky. Almost every time I go to visit her, just after I squat down in front of her, touch her arm and say, “Hi Mom, it’s Molly. How are you today?” she will turn her head and I will receive a huge smile and a twinkle in her eye because she knows who I am. Yes, she knows who I am. Call me crazy. Think that I am holding on to something I shouldn’t be, but she does not give this reaction to anyone else but me. I realize she doesn’t understand what a daughter is, but she knows I love her in a special way and this is what matters.

On to the surprise. Alzheimer’s disease is totally unpredictable. You never know what may surface and when. So, after months of her saying nothing or only getting those two lone words from her, I got lots more.

My son and I went to see Mom before I went out of town for a week and he was leaving for camp for a month.  My son knows you can’t expect any interaction from Mom, so we went in with no expectations. We walked in, I squatted down and said, “Hi Mom, it’s Molly,” and before I could get the rest out, she turns her head and says, a smile broad across her face, “Well, hi! It is so great to see you!”

This was the beginning of a perfect visit. She held our hands, sang, and chair danced with us. My son and my mom shared a treat, and when I gave her a hug and told her I loved her, she responded, “ Yea. Awwww, isn’t that nice.” Two sentences in one visit!

Where it comes from and what made it come out, I don’t know. It may not seem like much to some, but it was exactly what I needed.  Just when it has become harder and harder to go back for a visit, the disease gives me a break.  The universe reminds me who Mom is and helps me to keep fighting the fight, right by her side.

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Wednesday, May 6, 2015

To Be Loved

It has been hard to write lately, mostly because my mom’s health is declining. Maybe I think that if I don’t write about it, it isn’t true. I know this is a ridiculous thought. I am smart enough to know that just because I avoid something doesn’t mean it doesn’t exist.

My mom is now in a wheel chair. She cannot walk. Her inability to walk is hard for me because she used to be obsessed with walking. We would walk lap after lap in the building where she lives, talking. Now, she is confined to her wheelchair, and I can’t help but think what a boring existence she must have. I do not believe that everyone in a wheelchair has a boring life, but Mom has such physical and mental limitations, that I know her life is not a very high quality one now.

Her everyday care is wonderful.  The facility’s nurses and staff and the Hospice staff are great.  They keep her clean, dressed, and fed.  They talk with her.  She has music therapy through Hospice, and I visit her, of course.  But she rarely, if ever, gets to go outside. The winters here in Indiana do not lend themselves to taking Mom outside. She wears fleece outfits every day because she is so cold, even in the summer.  I used to take her out to lunch or to get her hair cut or simply to walk in the garden, but I am not able to do that now. The lady that cuts her hair has to come to her. I cannot get her in and out of my car anymore.  And she doesn’t talk.

So, I am again at a new stage with Mom.  Her walks will have to consist of me pushing her in her shiny blue wheelchair.  But I promise to do so because everyone should be able to breathe fresh air and feel the sunlight on their faces. I will continue to visit and tell her about what is going on in my life and the lives of those who love her. I will tell her that her granddaughter made a goal in her last lacrosse game.  I will remind her how much her grandson loves to ride his bike and all about his new gecko, Ginger.  And though she may only say “Yeah” or “Wow “ or nothing at all, she will have interaction with someone who loves her, and she will receive information about others who love and care so much for her.  I will still hold her hand, touch her face, sing to her, and hug and kiss her, even though she can’t give much back to me.  And I will continue to find ways to let her know that I love her.

For years she helped take care of me. She held my hand, kissed my cheek, and sang “All The Pretty Little Horses” softly into my ear.  Mom took me on walks and pointed out flowers.  She allowed me long summer days where I could climb trees, splash in the creek, tromp through the woods, or lie on the grass and stare up at the sky. When I was older, she helped me with my babies and listened when I needed her to. At every stage of my life she has loved me. Always adjusting to my age, my interests and needs, my mom was there in her own way, and I knew that she loved me. Now it is my turn.

I can feel our time together coming to an end.  Just how long we have only the disease knows. But I will make sure that she can feel my love during every visit.  Because I believe that no one ever forgets what it feels like to be loved.

Friday, March 20, 2015

One Day

 Sometimes I get the comments, “I don't know how you do what you do.”, or “Do you ever wish it would just be done so she isn't suffering?” And my answers are always very simple.

I don't know how I wouldn't do it. She is my mom. I love her. And no, I don't wish she would die.

I know that the disease is hard. Despite the fact that Alzheimer's has become an epidemic, people don't really understand what Alzheimer's disease does to a person, except those of us who deal with it every day. People also don't understand what it is like for the caregivers. No matter how you explain it, it is one of those things that, like the old saying goes, “until you walk a mile in their shoes” you don't get it unless you live it.

Despite all of that, despite Mom's lost skills, her inability to go to lunch with me or not being able to play with my children, I will take her just as she is. Because she is still here.

I often think what it will be like once Mom dies, and it deeply saddens me. I really can’t even complete the thought because it will be so devastating when it happens. My mother, with her disease and her decline, has become a large part of me and my existence. Being her caretaker is part of my identity now and when she is gone a part of me will be gone, too.

Each day, each week, the way that we communicate changes. Sometimes I get a huge burst of the “real” mom - she laughs and sings, she reaches out to hold my hand or places her head on my shoulder. Other times I get almost nothing – she mumbles a few words, she won't eat, she is so tired that she won't open her eyes.

When you take a trip to the beach or a hike in the mountains, the elements of nature become a part of you. You soak in the sun, putting color in your cheeks, the cold nips at your ears, the wind blows through your hair, and even the smallest grain of sand helps massage your feet as you walk barefoot along the beach.

Each little part of my mom has become a part of me - the way her face lights up as she hears my voice, the warmth of her now thin and delicate hands in mine, her need to sing every time she hears music, and even the way the adjusts herself in her wheelchair. All of these things make her who she is, but they also shape the woman that I am.

So no, I don't want it to end. I want to keep soaking in everything about her while I can. For one day, very soon, I won't get to see her smile, touch her soft cheeks and sing with her. One day, when I say, “I love you Mom. I'll come back and see you in a few days,” that day won't come.

Thursday, February 19, 2015

Reality- Part 3

With a new day comes new perspective. Two sayings kept running through my head: “Tomorrow is a new day” and “When a horse bucks you off, you have to get right back on.” I had to go back and see my mom. She was in a strange place with different people and probably felt awful as well. And she is my mom. She would do it for me. I will do it for her.

I geared myself up and made the choice to be happy. I wanted to bring joy into her hazy and confused world. She would need to hear a cheerful voice and feel a loving touch, and I would be the person to provide both for her.

I arrived at the geriatric psych ward, and the nurses said she had not slept all night, but had napped that morning. She was sitting in the main room in a very fancy combo wheelchair/recliner. I walked up to her, squatted down, looked her right in the eye, and before I could say anything, her eyes brightened, a smile lit up her face, and she said, clear as day, “Well, hi Molly.”

She said my name.

Let me stop right here and tell you that my mother has not said my name, unprompted, in years. I am talking like five years or more. I was “hon” for awhile after she started forgetting names. That was on good days. Just as often, she had no word for who I am. Until you are in the situation where you can no longer hear a loved one's voice, hear them say your name, you won't understand. This was a big deal. My guardian angel was looking after me because this was just what I needed.

We had a wonderful visit. She was still in a haze, but I cared less about that and more about just being with her. We talked. I played her some music by Andre Bocelli, which she loves, and she always perks up when she hears it. She did her best to sing through her mental haze. We held hands. I told her about my kids and what they were up to. Sometimes we just sat. We sat and held hands.

My mother is back at her regular place, but she still isn't who she was before this story started. The last four months have been hard on her. Her health has declined. She no longer can walk on her own and is in a wheel chair. Someone has to feed her. She still talks, although most of it doesn't make sense to me. But Mom is happy. She smiles more. She still lights up when I walk in and she hears my voice. And she is as beautiful as ever.   

Sunday, December 14, 2014

Reality- Part 2

And things change. After switching meds, her behavior had changed. She was groggy. The woman who used to walk incessantly was now shuffling her feet, and by the end of the day she was bent over at the waist, her body at a 45 degree angle. She had fallen, having tripped over the transition between the tiled floor and the carpet. Then there was another call; she had fallen because she missed the chair when she sat down.

My son and I joined her for her Thanksgiving dinner, and my husband stayed home with my daughter who was suffering from pneumonia. We could hardly keep her seated, even though it was hard for her to walk. In her mind, she was the woman who walks, the woman who checks in with the other residents, thinking she must take care of them.  I had to get her dinner so that she would stay seated. As long as I was feeding her, she was somewhat content.  But while my son and I were feeding her, she tried to grab the styrofoam plates and eat those as well.  Even writing it, it sounds crazy. Why would someone try to eat a plate? But one of the side effects of the anti-psychotic meds is increased appetite. She wanted to eat everything.

That evening, my son and I constantly fed her and constantly had to keep her from eating non-edible items - the plates, my fingers, her fingers.  If it was in front of her, she tried to put it in her mouth.  Luckily, my son took many trips to the dessert table to get her a cookie, and eating cookies kept her occupied

A few days later there was the phone call. She was going to be admitted to a geriatric psych ward. As awful as this might sound, it was a good thing.  She was going there to get her meds straightened out and hopefully to get the old “Lee” back, the mom I had  known just a week ago.

I was positive about this decision. We had gone down this road once before, and it had been wonderful.  It had worked.  This time the ward was in a different hospital, but she was to be treated by the same doctor who had treated her the first time.

But then I went to visit.

It was awful, not the place, but who she had become.  It was all I could do to not cry during the visit. Her skin looked paper thin. She couldn’t walk.  The same woman who previously could walk circles around you was in a wheelchair. I talked with her. I held her hand. Mom tried to talk with me as well, but it was as if there was a haze hanging over her. Her voice was softer, her speech was slower, and she had a hard time looking up. Her way of being seemed to be drug induced even though she was no longer on the meds.

The nurses let me stay a little later than visiting hours, but I had to go. I weaved my way through the maze of hallways to get to the exit and out to my car. Staving off the tears, “Just make it to the car. You can do it. Almost there.”

And then I lost it.

I called my husband and explained the situation. He let me talk. He let me cry. Through my tears, I explained to him how alone I felt. Alone because nobody was living this hell with me. I was taking this on alone. I was visiting her. I was taking the calls about medicine. I was showing her that her family and friends love her, despite the disease. He told me he was sorry. Sorry that I had to deal with this. Sorry that I felt so alone. And sorry that he couldn’t fix this for me.

And then I put it out there.  I told him what I was truly feeling.  Seeing my mother tonight, in that condition, I felt as if I could see the end. And I was in no way ready for it.

Wednesday, December 10, 2014

Reality- Part 1

Being a caregiver for an Alzheimer's patient is tough. Even tougher when that person is someone who you love. Few people, unless they are a caregiver, truly understand what it means, what it takes. Others don't see the constant paperwork you have to deal with. They don't see the tears because you hide them – you don't want to cry in front of strangers. They have no idea of the patience it takes. And the strength. It takes so much strength to get through each day.

I have written about it over and over, all of it, but especially about the pain. The pain of seeing my Mom wither before my eyes. The loss of who she was and watching her turn into who she is now. The pain of never knowing what I am going to experience when I go visit. Will she know me? Will she let me visit with her? Will she be sad, confused, frustrated, and cry or will she be happy and want to walk and dance with me? It is a game of chess in which Alzheimer's disease is always one move ahead.

I have come to deal with my new normal as well as anyone could. But one day I received a phone call that changed my life again. A friend wanted to talk. But I noticed that the voice on her message wasn't her normal cheerful, bubbly voice. I called her and after some small talk, she finally got down to business. She described what had been going on with her mom lately. Everything, and I mean everything, sounded familiar. It took me back seven or eight years in my own life. Every one of her stories sounded like an experience I had with my mom, and my heart broke.

I did my best to be as supportive as possible. I told her what I knew. I suggested steps to take, and described what my sister and I had done for our mother. I commiserated, and I told her to call me whenever she needed me before I hung up the phone. And then I cried. I cried for my friend. I cried for her mom. I cried for her family. I know what they face - the struggles, the decisions, the heartbreak. No one wants that for anyone, and especially for a close friend.

In my head, I was now ok with, had come to grips with, where I was with my mom's disease. I had accepted it and the life we had, but somehow I still thought that it shouldn't happen to others. The immensity of the disease rattled me once again. My friend's mother was now suffering from the disease. Not a grandparent, which seemed to be the norm. I was accustomed to hearing about parents, including my own dad, taking trips, going to concerts, watching the grandkids, but not suffering from Alzheimer's.

My journey with my friends and Alzheimer's was not over. I had another friend out west whose mother-in-law was suffering from Alzheimer's. Her mother-in-law had been diagnosed a while after my mom had. My friend and I had sent many texts back in forth. We shared good days and bad, asked questions and offered support. And then it happened. Her mother-in-law passed away. Before my mom.

How could all this be happening? The reality of the situation, my situation, my friends situations, took a toll. I wasn't ready for my friend's parents to die. I wasn't ready for their parents to be diagnosed with dementia and Alzheimer's and I certainly was not and am not ready for my parents to die. I am not sure, no matter the circumstances, that anyone is really ready for a loved one to die. Sometimes we come to accept that it is inevitable, but I was not at that point. I still am not.

I cannot imagine my life without my parents. I don't want to imagine life without them, but unfortunately it is becoming more a reality each day, especially with my mom.

To be continued...

Tuesday, December 2, 2014

Break Is Over.

I can hear the lifeguard whistle blowing, screaming out, letting us know that break is over. Tan, gangly little bodies running and launching themselves in to the pool because that 15 minutes was torture. As a kid, having to sit and wait and watch the old people swim laps without getting splashed was so boring.

So here I am (not tan or gangly) launching myself back into the writing pool. I took a break and I am not sure why, but I guess I needed a rest. 

I use writing to process feelings, to heal, to empty thoughts and ideas out of my head. I haven't stopped needing any of those things, but up until tonight, I haven't taken the time to sit down and write.

You may see a blast of blog writings in the next couple of weeks. I have a lot to say, a lot to release and I must take the time to do this for my own sanity. Here we go...