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Dealing with Alzheimer's: the 2012 Luminary Ceremony

The 2012 Luminary Ceremony hosted by the Alzheimer's Association (Rockland Chapter) through rainy conditions on the Central Ave. Field in Pearl River.

The Alzheimer's Association (Rockland Chapter) hosted the 2012 Luminary Ceremony on Sunday, September 9 at the gazebo in the Central Avenue Field in Pearl River.  As the committee prepared for the gathering, the sun was setting in the distance past the firehouse and the sky was a beautiful shade of pink.  The weather was looking ideal for a beautiful ceremony, scheduled to begin at 7:00 p.m. 

Unfortunately, much like the unpredictability of the disease, mother nature did not have the same plans as we did for a lovely evening.

Just as the ceremony began, with the crowd gathered on the sidewalk in front of the gazebo, and the votive candles lit inside the luminary bags, a few huge gusts of wind came through, signaling some stormy weather rolling in.  If anyone recalls the weather forecast for Sunday evening, it was a gorgeous day and there were no predictions of any inclement weather.  So, the first bump in the road was when some of the bags blew over and lit on fire.  The small fires were quickly extinguished and the ceremony continued.

Next came the rain. It started as a light drizzle and quickly progressed to a torrential downpour. As luck would have it, the ceremony was scheduled to run from 7 p.m. to 7:30 p.m. and that was almost exactly the length of the odd downpour.  While most of the guests were able to get up into the gazebo to stay dry during the ceremony, unfortunately some were not because of the steps, and they were forced to stand in the rain to watch the rest of the ceremony. 

Finally, an unfortunate accident where one of the guests was injured in a fall topped off the calamities of the evening.  Luckily, we received word that she is recovering well and was more scared by the incident than anything else.  [Sending good thoughts her way:)] 

Despite all of the unexpected issues faced, the ceremony was a beautiful remembrance of our loved ones, both past and present, who have suffered at the hands of the disease.  And rest assured, the committee is already discussing ideas to avoid similar issues in future ceremonies.

Additionally, under normal circumstances, the guests would have been able to take their luminaries home as a memento, but obviously the weather did not allow that this time. If anyone would like a luminary bag printed with their label, please let me know and I will ensure that you receive it.  You can leave a comment below with the name on the luminary bag and who arranged for it and I'll make sure it gets done.

I am attaching a few pictures from the ceremony so that you can all see how beautiful it really was, despite the weather and mother nature.

I also want to talk about a service that was literally life-changing for my family in dealing with my father's Alzheimer's.

As my dad's illness progressed, he quickly became unable to manage normal daily tasks and activities that we all take for granted.  For those of you who know him, you know he was a self-sufficient, independent man full of pride and dignity.  Alzheimer's has robbed him of that and it has been heart-wrenching for me and my family, especially my mother, to watch.

As a result of this disease, he was immediately rendered unable to administer his own medications, including but not limited to insulin, heart medications, etc. Additionally, as a result of his type 1 Diabetes, his diet had to be closely monitored. 

Shockingly, a man who had been religious with his diet and nutrition since his diagnosis with Diabetes in his early 20's, who would NEVER stray and eat sugary desserts or drink soda, was suddenly eating and drinking anything in sight.  From what I've heard from others dealing with Alzheimer's, this is not uncommon.  Often the patients will not understand that they've just eaten or are not hungry, and will forage for food, sometimes all night long.  For my father, it entailed him completely forgetting, or not understanding, that he was Diabetic and had dietary restrictions.  For anyone who has any experience with Diabetes, you know that this creates an extremely dangerous situation. 

I remember one time being at an event with my father a few years back and I saw him drinking a "soda."  Initially I thought it was a Diet Coke, but on a whim, I tasted it and realized it was regular Coke.  If he had drank the entire soda before I took it away, we could have had a serious situation on our hands. On another occasion, he ate six or seven oranges in one afternoon, causing a spike in his blood sugar.

One of the ways we dealt with the food issues was that we started to hide the food.  We moved the cookies and bread (his favorite night time snacks) to other rooms in random cabinets.  We only put out one piece of fruit at a time so he wasn't able to eat an entire bowl of fruit at a time. 

Eventually, more and more basic daily functions became difficult chores for us with him.  It would literally take hours to get him to get ready in the morning - get out of bed, shower, shave, brush his teeth, get dressed.  He had no concept that any of it needed to get done, and he downright refused to go anywhere near running water most of the time.  Apparently, running water is commonly an issue for patients as well, which is probably the reason that someone came up with the "dry" shampoo and "dry" soap offered on some Alzheimer's shop websites (I have no idea if they really work because I think we only used the shampoo once or twice). 

As a caregiver, on a daily basis, trying to persuade someone to brush his teeth for over an hour every day, trying to persuade them to take a shower and having to literally help him in the shower, can become exhausting and depressing.  I cannot even imagine what it must be like for my mother to watch her husband, her partner, her best friend, go through this undignified spiral downwards.  I know how hard it has been as a daughter when my father turned into a person that I took care of in every way ... in ways he would never want his daughter to do.  But that's what we had to do. 

Thankfully, my sister and I were able to persuade my mother to get help at home.  For those of you who know my mother, you know she was resistant and wanted to do it all on her own.  I remember the day that me and Michelle sat her down to tell her that he needed round-the-clock care and supervision.  She was adamant that we were not at that point yet.  She downright refused to commit to the service.  But we pushed the issue, in part because it was wearing on us, but mostly because we saw it wearing on her.  She had aged ten years in a short span of time and we saw her headed down a dangerous path.  She was taking it all on herself and I cannot tell you how difficult it was, and still is, to deal with some of the daily issues that we were dealing with.  So, once again, Michelle and I won out and persuaded, i.e. forced, her to do it. 

There are a few options for families who are at this point.  Obviously one is to send your loved one to a facility where they can monitor and care for them 24 hours a day, a nursing home, an assisted living facility, etc. However, if you would like to keep your loved one home and are struggling to deal with him/her on your own, you can also get companions/aides in the home to assist. 

We use a local service that provides in-home assistance called Companions Plus Senior Care (www.companionsplusseniorcare.com).  They have been absolutely amazing from day one.  We started out with help a few days a week for a few hours a day and have moved to round-the-clock help out of pure necessity.  We have had three or four different women who have come and cared for my father over the past two years. 

I mean this from the bottom of my heart, they are all saints.  What they deal with on a daily basis, and how they care for and treat their patients, who are complete strangers to them, shows a truly amazing quality of character.  I'll be honest, even as his daughter, as a person who loves him unconditionally and with all my heart, there were times, and still are times, when I lose my cool and my frustration takes over. But the aides from Companions Plus Senior Care have more patience than anyone I have ever met.  And we are truly blessed to have found them. I can say with 100% certainty that if we had not found help, either my dad would not be home anymore, or my mom would be having some serious health issues of her own.  

And for the record, I hope I'm not coming across as if I'm judging anyone who sends their loved one to a nursing home, because I'm not. This is one of the most difficult things anyone will ever deal with, just as any serious illness is. And I'm a firm believer that until you walk in someone else's shoes, you cannot and dare not judge them.  I don't think I could do this on my own, without the help of my mom and sister.  Just like I don't think my mom could do this, without my help and my sister's help.  Each situation is unique, and requires its own unique solutions.  And to be clear, we have visited and researched nursing homes, and if the time comes that we cannot care for him at home any longer, we will be sadly going down that road ourselves.

So, when you feel like you can't handle it any more, and you feel like you're all alone in this fight, know that you are not, and that there are people out there who can help.  And the Alzheimer's Association is always there as a resource to help you manage and to support you.  Contact Maria with any questions at maria.paliotta@alz.org or 845-639-6776.

More tips and ideas to come.

And don't forget, .  Raffle tickets are $5 for one and $10 for three and are available at the store every day until then.  All proceeds go to Team O'Grady for the Walk and ultimately to the fundraising for the .

Also, the 2012 Walk to End Alzheimer's is scheduled for Sunday, October 7, 2012 at the Romano Student Center on the STAC campus in Orangeburg.  Registration starts at 9 a.m. and the opening ceremony and walk start at 10 a.m..  There will be lots of fun stuff going on for the kids and lunch served upon return from the walk.  The walk is a short, flat walk around the STAC campus, allowing walkers of all abilities to participate.  To register, go to www.alz.org/walk and search for the Sparkill location.  As always, Team O'Grady is taking walkers so feel free to register with us.

-Siobhan O'Grady - a care-giver daughter

This post is contributed by a community member. The views expressed in this blog are those of the author and do not necessarily reflect those of Patch Media Corporation. Everyone is welcome to submit a post to Patch. If you'd like to post a blog, go here to get started.

Ann Marie Hahr September 14, 2012 at 10:46 AM
Great story of a true heart felt struggle. You don't really understand until you are in it. As always this family shows true strength!
Carol Dyer September 14, 2012 at 11:26 AM
What a wonderful blog post sharing such a personal story about your family. This is a disease that is effecting more and more people everyday. Your Dad is very lucky to have such a caring and loving family. God bless you all.

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