Friday, July 19, 2013

Connection


These days technology can get in the way. People’s faces are hidden, buried in phones texting, emailing, or checking some sort of social media. People say that texting has replaced talking. We worry that people now have acquaintances rather than friends because we aren’t connecting as individuals anymore. And it is true; technology –smart phones, computers, apple TV, DVRs, and even navigation systems – demand that we pay attention to them rather than to other people. But can technology also be a positive thing?  Can it help us connect with others rather than separating us? 

As I sit here in a cafĂ© writing this entry, I can say that technology has been a blessing for my family since my mom developed Alzheimer’s.  My extended family is spread throughout the country.  I live in Indiana with my husband and children, my mom’s brothers live in New York and New Mexico, my sister is in North Carolina, and my dad is in Virginia.  We communicate constantly with email, texting, and other electronic means.  We couldn’t communicate instantly when we needed to, or wanted to, without today’s technologies. 

Personally, I also have been able to connect with others through the blog entries I write. They are posted for the world to see and read. Writing is a type of therapy for me. It is cathartic. My entries help me process the emotions I am feeling and the problems I encounter while being a caretaker. I know my writing has touched others and helped others, as well. The feedback has been overwhelming. Even if someone isn’t in exactly the same situation, he or she can get a glimpse of not only what it is like for me, but also for others who are taking care of a loved one with Alzheimer’s.

Smart phones have been a blessing for my family. I send photos to family members so they can see what mom is up to.  It may just be her sitting somewhere smiling, but it also could be her sporting a pretty hat while playing dress up with my kids.

I have sent videos of my mom dancing, something that she rarely did when my sister and I were growing up, but she can’t get enough of it now. If the music is on, she is either trying to sing to it or dancing to it or both! I also have sent videos of her talking, just so my sister and mom’s brothers can hear her voice. Sometimes that is just what they need, just to hear her voice again, and though what she says may not make sense, it doesn’t matter. The sound of her voice is music to us.

We have tried to use Facetime to connect as well.  I Facetimed with my sister on her birthday last year. I was asking my mom to say hello to her daughter and I said, “Say hi, Mom!” Her sweet, happy response was, “Hi, Mom!” It made my sister’s day just to see her face, hear her voice, and have her say “I love you.”  So much happiness, so many tears, all at the same time.

I have connected not only with family but also with strangers. Because I have been very open and honest with my situation and feelings, I have had countless messages from people through Facebook asking for help and advice on how to handle situations with family members who are suffering from Alzheimer’s. They don’t know what to do and are desperate for help. They have turned to me, and I have shared my opinions or told my story or redirected them to an organization like their local chapter of the Alzheimer’s Association.

Recently I reconnected with a friend from college. Unfortunately, she also is dealing with being a caretaker for a loved one with Alzheimer’s. At first we reconnected through Facebook but now we also are texting. Unless you have been or are a caretaker, you never truly understand what it is like- the agony, the heart break, stress and desperation you feel and the grieving that you go through, not to mention the patience that you must have - what a lesson in patience!

Through texting, we are able to immediately connect with each other. Sure, we could pick up the phone and talk, but sometimes texting is a better option.  The other day she and her husband were in the hospital trying to get her mother-in-law to take some medical tests that had to be done. In typical Alzheimer’s fashion, her mother-in-law was refusing to have them done. She was explaining to them that she was fine and wasn’t sure why she was there. (Sound familiar to anyone out there? I know it did to me.) They didn’t know what to do. They needed someone to help them, someone who had gone through the same things. That person was me.

Knowing someone who is going through what you are facing is a blessing. It helps take a little of the weight off your shoulders, if only for the moment. The few words that I offered helped. I simply said that there was no reasoning with a patient who has Alzheimer’s. They might as well wait and try again tomorrow. Fighting with and trying to force her mother-in-law was not going to work. She would simply continue to fight them. Take a deep breath, relax and let it go, I advised. Tomorrow is a new day.

These few sentences were all my friend needed. She knew that I had been through what they were going through. Often the answers, the reality, that make sense to us in our rational world, make no sense to the person with Alzheimer’s. They are at the mercy of the ever changing world created within their minds, a world with its own reality. If the rules of their reality demand that they refuse help, and if you can let it go and take care of it later, then do that. Sometimes it is only a matter of minutes before the person with Alzheimer’s has a new reality, one that allows cooperation. Other times it may take hours, sometimes a day. Remember the patience requirement?  Be patient, try again when your loved one is ready.

To all of you out there trying to get through the day, through the seemingly impossible situation you have to deal with, remember that this too shall pass. Remember, too, that this is the ultimate test of love and patience. You can do it. And remember that there are others out there going through the same things. You are not alone. Use your resources to find those other people. Call the Alzheimer’s Association. Surf the web and find a chat room or blog that you can follow. Text a friend or family member. We are out here waiting to offer a helpful word, a hug, a text.  Find us and connect. 

Monday, July 1, 2013

Things Lost, Things Gained


They say that grief can hit you without warning. That at the time you least expect it, it will hit you like a ton of bricks. They are right.

Grief, you might ask? What are you grieving? Your mom hasn’t died. No, she hasn’t died, not in the literal sense. I still get to see her every week. I can hold her hand and feel her soft skin. I still can hear her sweet voice. I can dance with her and giggle as she tries to sing songs. But there are so many things that I have already lost with her. Having a relationship with a mother who has Alzheimer’s is like a continuous death, a little death of something lost almost every time I see her. A memory, a name, a skill, all lost, little by little. These things you grieve as you see the person you once knew changing right before your eyes.
Lately my mom has been on a plateau. We have been rolling along. The visits have been about the same for over a month now. There are walks. There are broken conversations. Things have been somewhat status quo with her. I guess because of that I have done less grieving lately for my mother. I have not felt the emotional roller coaster ride that I had been on before that things evened out, if only for awhile.

I was at home ironing some clothes and BOOM, it hit me. It was out of nowhere. I was overcome with sadness. Somehow the synapses in my brain connected ironing to laundry to lost socks and that was all it took. My brain had created a metaphor that was too much for me at that moment. The lost socks were all of those things-memories, experiences- that I had lost with my mom. Those experiences I never got to have as well as the experiences that we already have had that she no longer recalls. With an Alzheimer’s patient, once “something” is lost, it is gone forever. There is no relearning it like you or I might be able to do. It is simply gone, swirling around in a mess of black tarry plaque in an Alzheimer-addled brain.

So, I stood there crying, steam swooshing out of the iron, clothes half ironed on the ironing board. Stood there grieving the lost things, the things that could have been and the memories that have been lost forever.

I know in my intellectual being that these sort of victimizing thoughts do no good. They cannot create new memories for her. They cannot make her know my name, drive a car, sing to my children. They cannot make her into the mom that I wish I still had. But right then that is what my heart needed. It needed a release, and I hadn’t even known it. I had been moving along in my life, accepting the status quo situation with my mom and not dealing with it.

I really think I had been somewhat relieved that for a little while things were the same. There were no dramatic changes that I had to adjust to. I was savoring the fact that maybe I could just cruise along and not feel. Sometimes that seems like the easier choice, at least at the time.

When I was done with my crying and grieving that day, I thought back to some of the other times I had been overwhelmed by my feelings. I can remember a few. Once while labeling my mother’s clothes I had a breakdown. No one else was around, but I literally said, out loud, “Is this what my life has come to? Labeling my mom’s clothes like I would my own children’s - as if she is going to camp?” There I sat, laundry pen in hand, crying over an unlabeled pile of clothes.

Another breakdown happened while I was shopping in Target. There was no specific trigger that I can remember. I stood there trying to hold back the tears. I had to abandon my cart in the middle of the store and leave. Tears streamed down my face as I put my sunglasses on, seeing people stopping and staring. Thinking, let them make up their own stories about why I was crying, my story was bad enough.

Even yesterday I had a twinge of pain. As my friend was driving me around Waldo Canyon in Colorado Springs, where last year a forest fire devastated the land, pushed people out of their homes, and took homes and some lives, I again was reminded of things lost. Flying W Ranch had been burnt down, destroyed, lost. This old working cattle ranch had also served chuck wagon suppers and provided entertainment to many a person. Back in 2002 my husband and I took my mom to the Flying W for a night of fun. When we got there, she told me that she had been there before, years ago. She started on a story of her adventures of traveling cross-country from New York to California with her friend Jane. In the 60’s, they had stopped here and seen the ranch and had the chuck wagon supper. She described how it was different back then - updates that had been made, things moved. I was amazed that she had been there 40 years earlier. I was so glad that we had taken her, so I got to hear that story.

So, while driving through Waldo Canyon yesterday and seeing the devastation, I thought of that story. I thought of how she doesn’t even remember that trip or her stop at the Flying W. She also doesn’t even know about the fire that burned it down, but I do. I have those memories and that can’t be taken from me, can’t be lost.

In the midst of pure loss and devastation of the families of Colorado Springs, I also saw renewal and rebuilding. Green vegetation already was starting to grow. Woven in between burnt sticks that were once trees, I saw houses being rebuilt and new possibilities. It was a great reminder that with things lost come new life and experiences.

As I grieve the loss of the mom I once knew and wish I still had, I have to remember that I have gained so much as well. I have learned a deeper level of patience and understanding. I learned unconditional love for my mother, and I have learned and gained a deeper understanding of my mother as a person. She had to let walls down so that I, her daughter, could see and help her with her needs and fears. In doing so I saw another side of my mom, a side I may not ever have seen if she didn’t have Alzheimer’s. And the Colorado Springs and Waldo Canyon’s tragedy has helped me again see that where things are lost, there also is a chance that something new will be gained.