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...

Monday, September 15, 2014

Stop It

It is almost impossible to avoid the media circus after what has been going on with the NFL and some of its player, even for someone like me who chooses not to watch the news. These issues are everywhere-the news, social media, ESPN, during the games and people are talking. And it doesn't stop there. We get to hear, hourly, how people in our own communities have decided to hurt each other.

I am not going to voice my opinion on what coulda, shoulda been done with these organizations, individuals or these situations. What I have to say is simple and goes out to everyone-men, women and children.

Stop hurting others. Do not hit, punch, kick or otherwise physically or mentally hurt someone or something because they didn't say or act like you think they should have. Punching someone isn't going to make them love you more or straighten them out. Shooting a person does not solve a problem, but instead creates more problems. Kicking a dog won't make it listen to you. Dumping a bucket full of urine and feces on an individual does not make you cool. Hitting a child and them telling them not to hit others is hypocrisy. Rumors and gossip hurt. Filling your own head with constant judgement breaks your own spirit.

Do the above statements may sound familiar? I am sure they do, but what can we do about it?

Help each other. Help yourself. Lead with love. Forgive. Throw away those judgments you've been holding on to. Stick up for others. Practice acceptance. Make a phone call. Intervene. Offer to listen. Share a phone number or website. Get over your pride and embarrassment and do something. You could save a life.

Below are some hotlines or links that could help. There are many others out there, find them and use them.

Monday, August 25, 2014

Solving a Riddle

Alzheimer’s disease is a conundrum, a riddle, and like any puzzle, it can be tough to solve. Just when you think you have it figured out, it shows you how wrong you are. The symptoms of Alzheimer’s disease affect its victims differently. Ask my mom where she was born and she couldn’t tell you. Ask the Alzheimer’s victim sitting next to her and she will tell you where she grew up and the names of her siblings, yet this same person may believe that a doll is her baby, or she may talk to and reach out to objects we cannot see. And why is this person affected and not that one? We don’t know. That is a puzzle that is still unsolved.

Some say that absence makes the heart grow fonder. I put this cliche to the test this summer with an Alzheimer’s patient, a person who can forget in an instant, my mom. My family and I did a lot of traveling toward the end of the summer. We drove from Indiana to Colorado, back to Indiana, and then down south to Virginia, my old stomping grounds, then on to North Carolina, and finally back to Indiana. This travel encompassed a month when I was not home and not able to visit my mom.

There was a time when I felt so guilty if I couldn’t visit her once a week that it made me physically sick. Now I wasn’t going to be able to see her for a month. How would this affect her? How would it affect me? Mom is in the later stages of Alzheimer’s. Her brain functions are more affected by the disease than her body. She can outwalk the best of them, but ask what her name is and she can’t tell you. In fact, most questions are answered with pure nonsense. I was sure that I would return and she wouldn’t know me. I thought I would receive a blank stare or a confused look when I went to see her.

It was time for the big test. I was anxious. I prepared myself for the worst. Walking in, I mentioned my apprehensions to the nurses and they reassured me. They were sure that she would know me. I saw her sitting alone, and after a deep breath, I approached her during morning activity time.

Gently, I placed a hand on my mom, squatted down to look at her, smiled, and said, “Hi Mom, it’s me, Molly. I sure am glad to see you. I have missed you.” And her face lit up. There was that smile I knew. The joy in her face showed that she knew me and was happy to see me. I was so happy to see her and I had missed her so much, more than I can remember in a long time.

This experience reminds me that sometimes I need to heed my own advice. Recently, after talking to someone else who was struggling with being a caretaker, struggling with the continual loss of the mother she once knew, I gave her some advice. I said, “They will forget. It is part of the disease. They will forget things. Memories will be lost. They will forget their own names and the names of everyone they ever knew. But one thing they will never forget is what it feels like to be loved.”

Love is always the answer.