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.

Saturday, July 26, 2014

Giver or Taker

There are givers and there are takers. Each of us is weighted toward being one or the other.

My parents are givers. I grew up seeing them open their, our, house to others - a place for strangers to stay if they needed a place, a meal on a holiday instead of spending it alone. My mom was a counselor and also ran breast cancer support groups, volunteered in our schools, and even helped people with bipolar disorder with their diagnoses and treatment.

My dad also made sure that people were taken care of. He touched many lives - making sure legal paperwork was in order, rewriting resumes, and gathering funds to help some elderly folks who needed help. He visited and checked in with those who needed it, those who didn’t have any one else to take care of them if it wasn’t for him.

My parents just did these things, with no pomp and circumstance added. Usually, no one had any idea how they had helped someone until years later. Growing up, this way of being was just how it was. Any other way of being or thinking was somewhat foreign to me. Why wouldn’t you volunteer your time or help someone?

My husband, Jason, has the same mentality. During the 15 years that we have been married, he has helped others in need. He has bought meals, toiletries, and even paid rent for folks who just needed a chance. He has volunteered on the boards of non-profits. And Jason has made sure that he found work for those who needed it. Jason once told me that he was looking to give a hand up, not a handout, believing that it was better to empower people, to teach them skills, and to have them work when they could. Even so, he made sure that these people were taken care of somehow. He got them what they needed.

I have continued down my parents’ path. I volunteer for agencies and help out at school. I do what I can to help who I can, again asking nothing in return.

Recently, I have been doing a lot of volunteering for the Alzheimer’s Association and participating in activities that make my children very aware of what I do. Most of the time my volunteering occurs while they are in school, so although they know in the back of their minds that I am giving back, they aren’t seeing it first hand.

A story published. A book signing. Those were pretty darn obvious. You can physically see and hold a book, and both kids came to my book signing. They saw the people filing in to buy the book and talk with me while I signed copies for them.

The Longest Day (a day set aside for raising funds to fight Alzheimer’s) was a little harder for the kids to understand. They saw it as getting to hang out with their Grandma, just as they always did, as we involved my mom in the fundraiser as much as we could. They knew it was to raise money, but they did not see the work that it takes to collect money for the cause, as that took place mostly online.

The Blondes vs Brunettes Flag Football game was a bit more obvious to them. I was gone twice a week for practices. I had plays to study. I had a news blip to participate in. And their dear old mom hurt her knee in practice. All of these things were leading up to the big game, which they were coming to see. Again, they knew I was raising money, as they heard me talking about who had given or how much more I needed, but again, most of the fundraising was online.

Even before the big game (which we, the Brunettes won), they wanted to do something to help. They wanted to raise money for the Alzheimer’s cause. They saw every day what that disease was doing to their Grandma. They knew her when she was normal, their loving, intelligent, beautiful Grandmother. And they have watched her regress through stages of Alzheimer’s to now when she no longer knows who they are. They have fed her, held her hand, and sung to her. My kids have seen me crying over her.

Having run some successful lemonade stands before, they approached me with an idea. They wanted to know if they could run a lemonade stand and donate the money they raised to the Alzheimer’s Association, but they had one concern. I had bought the supplies for their first lemonade stand, but I told them that they would be responsible for buying the lemonade, cups, and other supplies for any future lemonade enterprises. With almost no readily available funds, they asked if I could help. Smart kids. How could I say no?

They were overjoyed. We made a plan and headed to the store to buy supplies. We made a huge jug of lemonade, filled a cooler with ice, set out purple cups, and erected a tent to keep the fierce summer sun at bay. Signs were made and chairs were put out in case of a lull with no customers. The best part, though, was the picture they wanted on the table. A picture of them with their Grandma. I helped them make a small sign explaining to those who came by that 100% of the proceeds would be donated to the local chapter of the Alzheimer’s Association of Greater Indiana.

So, excited to start, they were ready to go at 9am. But we had to hold them off for a bit. Jason needed to mow the grass, pick up the table from the office for them to use, and we had to set up. Jacob and Reese could hardly stand it. They wanted to make some money!

Finally, 11 am rolled around, and clad in Mom’s purple Alzheimer’s shirts, they took their positions at the lemonade stand (with a little help from Mom). The first customer slowed, stopped, parked, and got out of the car before we were even completely set up. He walked up and told them, “This is really great what you are doing.” What a good start for the kids to hear that!

As with all lemonade stands, indeed for all retail businesses, customers came in waves, followed by periods of no customers. At one point, early on, Jacob said to me, “Mom, I hope we can get more than $10. I really want to be able to donate a lot of money.”

That had me thinking. How could I get more people here? I shushed the voice in my head telling me my idea was silly, and I emailed three of the four major local news teams, letting them know what my kids were doing. It was a brief email, but explained that any help would be appreciated. Not ten minutes later, I had a response from WISH-TV. They would be there in 30 minutes.

Jacob and Reese were so excited! Jason and I prepped them on the questions that they might be asked and to our surprise, they needed no help, no prompting. These two kids knew exactly why they were doing this.

The news van pulled up, and since there was a lull in customers, we knocked on our neighbors’ doors to ask if they would be customers for an interview with the news. Even though they already had supported the kids with a few cups of lemonade and a donation, they were there to help again, to support the kids and their cause.

The interviews went without a hitch and the kids made it onto the evening news. Even though that was certainly an exciting part of the process, it wasn’t what really mattered. Jacob and Reese wanted to find a way to help their Grandma. They also wanted to help other people who have been affected by the disease, just as they have been affected. Despite being only eight and 11, adults stopping by the lemonade stand told them stories about parents, relatives, and friends who also have had the disease. Their experiences illustrated that the disease has burdened many lives, and confirmed to the kids that what they were doing mattered not only to them, but to many other people.

Maybe you will take this as story about a proud parent, as I certainly am, but what I also want to convey is that your way of being matters. It matters not only to yourself and to your kids, but also to each person whom you encounter in your life.

Give more than you take because we need a lot more givers, and giving truly takes very little. Look to give a hand up and even a handout once in awhile. Don’t look for something in return. No one needs to know what you have done because, trust me, the person it affects will know. And just as importantly, you will know, and you will realize that when you give to others, you also give to yourself.

Put words into action. Make that phone call, give a hug, and go visit that loved one with Alzheimer’s. Yes, it is hard when a person you love does not know your name. But he or she sure can feel the love.

Click here for the link to the news story.