Alzheimer's disease is the sixth leading cause of death in the United States.
August 26, 2013
Anniversary at ACTO!
I often hear people say that a person suffering from Alzheimer's is not the person they knew. I wonder to myself - Who are they then? ~Bob DeMarco
Last year when Brody started Pre-K it occurred to me that I wanted to do something with my free time during the day that would make a difference in my community. I had volunteered some at a local poverty stricken elementary school but the hours that they needed from volunteers had changed and I was unable to go back and honestly even though I felt good about helping with the school it didn't get me quiet the satisfaction that I was looking for. They say that God answers in His own timing and I believe that because as I was flipping through our church bulletin I noticed that there were several volunteer opportunities available; one being the school I had already helped out with and the other was for the local Alzheimer's Caregivers Time-Out (ACTO). This really grabbed my attention because I have had first hand experience with Alzheimer's as it runs in my family and my Pappaw had signs of dementia before passing away 2 years ago. I took a leap of faith and after sitting down with the Activities Director at ACTO it seemed their day program would be a good fit for me with the hours I had available to give during the day. I decided I would volunteer three days a week for 4 hours a day while Brody was in school directly next door (talk about everything coming together!).
ACTO was started in 1988 and it provides both in-home respite care and a day care program that allows caregivers a break so that they can take the time they need for themselves to rest, run errands, work or anything else they are unable to do while caring for their loved one with Alzheimer's. Many do not understand what it takes to care for a family member that has been dealt with this awful disease; it's a full-time job that leaves many caregivers worn down and stressed out. Once this disease has progressed most all of it's victims need a full time caregiver as they can't take care of themselves during the day. As you can imagine, this puts a huge burden on the family. Luckily, for the people of Albany/Leesburg there is an option and that is ACTO.
My first couple of days were a little overwhelming because with 20+ clients I was afraid I would never remember all of their names....but you eventually do! I spend my mornings greeting the clients as they are dropped off, pinning their name badges on and offering them a morning snack while they watch the television or talk amongst themselves. I help with mid-morning activities such as chair aerobics, balloon volleyball, puzzles, arts and crafts. There are special days of the week like their Ice Cream Social, Pet Therapy and Movie Day on Fridays. Holidays are a big deal at the center so those are always celebrated in style. I go with the staff to pick up their lunches at our local hospital and pass them out once we return to the center. Usually after lunch my day is done at ACTO and it's time for me to pick up Brody next door.
What was originally a three day a week thing has turned into a 5 day a week passion. I went in not thinking that I would get so attached to the clients but I guess it's inevitable. I don't even like to call them "clients" because they are like family to me....even the ones that are hard to get along with.
When you first walk into ACTO you might be overwhelmed if you have never dealt with Alzheimer's. This disease has good days and bad days so therefor it's victims do too. Some days are better than others. You start to see there is a human being in what is now almost a shell of what they were. You see this person for what they were before they became sick. You see past the fact that they are confused, need more help when it comes to getting to the rest room or even having accidents and their child-like ways. This person was someone's Mother, Father, Child, Grandparent....this person was somebody's world at one time. You can't discard them because they now aren't the caretaker, they need to be taken care of. They are fragile, they too, need to be loved and cared for.
Since volunteering, I have seen the many stages of Alzheimer's and honestly, it is a scary disease. It's a disease that I feel like nobody should ever have to deal with. It is a disease that WILL NEVER GET BETTER...it just progresses, it's terminal. It robs you of everything you have and leaves painful reminders everyday of what you once were. Some of the clients you would never assume had Alzheimer's until they start up a conversation. They look normal, dress nicely and are well groomed. They discuss topics such as the weather, the day, the time, a story from way back when and then the conversation starts repeating itself. Other clients you can tell immediately have Alzheimer's as they are very confused, stuck in time and need extra help with seemingly normal day-to-day tasks (like coaxing them out of their car).
I know you're probably thinking why would you want to volunteer somewhere that seems to only have a negative ending but there are so many positives that make it worthwhile. Every client has an amazing story and most are happy to share it with you (sometimes more times than you can take) because it's important to them. They like to engage in conversation and hear what you have to say. You may start off on a topic and 9 times out of 10 it will end up way out there but it's important for them to have their voice heard. Believe it or not many of these people are muted because family members don't know how to deal with this disease so they do not engage in conversations with them. It is exhausting and I can see how that happens because I only deal with them 4 hours a day and I am spent so I don't see how caregivers do it. It's also frustrating for the clients because in the early stages they know that they get confused and sometimes make no sense, sometimes people argue with them because what they are saying "isn't right". It's my job as a volunteer to listen to whatever they want to talk about, right or wrong and make them feel important. Yes, George Bush may no longer be President but if that's what you believe I am not going to argue with you.
Obviously, I can't name the clients names for confidentiality reasons but you start to learn about their quirks, trigger points and overall personality and that is what makes this so rewarding. You do whatever it takes to make that person feel at ease and "okay" because many do have an extreme level of anxiety. There is one sweet man who at the top of his game was a contractor and almost every day he starts looking for his truck. This truck is his pride and joy but he walks the floors looking for it so to help ease his anxiety you just gently remind him that his wife has it and will be picking him up after lunch and usually he's good after you reassure him it's okay. Another sweet lady who speaks Spanish starts to worry about her daughter coming to pick her up so you just remind her that at 2:00 her daughter will be there, granted, you may tell her 100 times before then but she's coming to you because she trusts you have the right answer. One lady, who has now deceased was going blind and always complained that the center never had money to turn the lights on and she would get highly upset. You can't tell the client that she's going blind so you comfort her, letting her know you will work on the problem all the while trying to find something to comfort her. This particular lady was a business owner so it made her feel good to stuff envelopes and file papers; that's what we helped her do while she was there. She would stuff envelopes and eventually open them back up to stuff them again. It worked, she was happy and it got her mind off the lights "not working".
I could go on and on with stories because each and every client has their own but you can see a glimpse into my day. I choose to find humor and joy instead of sadness. Do I get emotional? Yes, I cry and get mad that life has dealt them this nasty blow but I have to choose to make my time at the center a happy one. I choose to smile and hug every single one of them each morning, engage with them and make them feel loved. I do love them and tell them because for some of them that is the only time they hear it. Will they remember my name the next day? Probably not. Will they remember my face the next day? Possibly. I am not worried about the next day, I am concerned about how they feel in that moment...they live their life in moments, not days.
So many good things have happened to me while volunteering at ACTO and I am so thankful that I was given this opportunity. I have met a wonderful person, named Becky who I consider my Best Friend. She knows me in and out and loves me anyway. Becky is the Activities Director and is such an asset to the center and she's just got a heart of gold. I seriously think she is one of the sweetest people I have ever met even if I do think she wears her rose colored glasses too often! I have been exposed to so many great people at ACTO and they all couldn't do what they do if they didn't love their job. Yes, for some it's just a "job" but most everyone there this is their passion. I have been able to conquer my fears of performing in front of people during my time at the center. ACTO does several charity/fundraiser events during the year to help raise money for the center since it costs just dollars (seriously) a day per client to attend the program. I was in a play called "Murder's in the Heir" which was put on by ACTO in February. I played "Nancy" the maid in this fun murder mystery where the guests chose who they thought killed the wealthy Mr. Starkweather.
I think the biggest thing for me has been how much I have grown in the past year. I have had to face my fear of dying and the loss of my grandparents; where I had the void of not having them around anymore has been filled with the clients at ACTO. Working with Alzheimer's has made me a more compassionate and patient human being. It has given me a purpose. I thought when I started volunteering that this would be just a thing I did to fill the free time up during my day but it has become so much more than that....it's become something I am passionate about. I will volunteer as long as I am able to at ACTO; I firmly believe I need them more than they need me.
Here are some facts about Alzheimer's:
Today, there are no survivors of Alzheimer’s. If you do not die from it, you die with it.
One in every three seniors dies with Alzheimer’s or another dementia.
Alzheimer's disease is the sixth leading cause of death in the United States.
Today, an American develops Alzheimer's disease every 68 seconds. In 2050, an American will develop the disease every 33 seconds.
Visit ALZ.org for more information on Alzheimer's.....educate yourself on this terrible disease!