Dealing with Alzheimer's: Finding Support

My father, John O'Grady, was diagnosed with Alzheimer's in early 2009 after suffering a heart attack and undergoing a quintuple by-pass on New Years eve of 2008-2009. 

In many cases, an Alzheimer's patient is diagnosed early on in the progression of the disease and it could take years for the disease to fully develop.  In our case, my father was propelled forward towards the latter stages due to the trauma of his heart attack and surgery. 

He went from totally fine, with some slight signs (which we thought were normal forgetfulness in a parent in his early 60's), then once he had his heart attack he never came back. Over night we were dealing with someone with advanced Alzheimer's who needed constant supervision and care to administer medication, meals, and a daily routine. 

Unfortunately, to make matters more complicated, my father has been a Type 1 diabetic since his 20s and is insulin dependent. Suddenly, my mother was tasked with monitoring his blood sugar, diet, and insulin regimen, as well as his other medical issues resulting from the heart attack and Alzheimer's diagnosis.  

It wasn't so bad in the beginning. We all chipped in and helped out with supervision and care, driving to doctor's appointments and diagnostic lab tests, etc.  But the disease progressed very quickly in my dad, and soon we were unable to handle it on or own. 

It took the biggest toll on his primary care-giver, my mother.  She was so absorbed with taking care of him that she was no longer taking care of herself.  I can't tell you how many people have said to me over the past three years, "It's the care-givers who go first." 

Luckily, my sister and I had heard that there were support groups offered for the families of Alzheimer's patients, and with a few google searches, I found them.  The Alzheimer's Association, Rockland Chapter is located in New City, New York and offers meetings and groups for both care-givers and early onset patients. 

I remember how many times my sister and I sat down with our mother and begged and pleaded that she go to the meetings, just to try it.  She would brush us off, say she was fine, say she didn't have time.  But we saw her aging before our very eyes and we didn't give up. 

Finally, about six months after we first discussed it, my sister and I actually physically dragged her to the Monday afternoon care-giver meeting at the New City office and sat through the meeting with her.  She was very quiet throughout the meeting, just taking it all in. 

And afterwards, she immediately scoffed and said, "I'm not going back to that meeting, I don't think I connected with anyone there... I don't relate to any of them." 

I was shocked, but said, "OK, we'll find another meeting group for next week and try again." 

You can imagine my surprise when the next Monday came and she was getting ready to go to the meeting.  Her story: "It would be rude to not go back. I wouldn't want to offend anyone." 

Whatever she had to tell herself to get back there was fine with me.  She went back to the Monday meeting (early 2011) and I don't think she has missed one since.  Sitting and talking with other people who are going through exactly what she is, sometimes worse, has had an amazing beneficial effect on her.  She looks years younger.  She has made new friends who she spends a lot of time with outside of the meetings and on the phone.  These care-givers bond with each other in a way that no one can. They understand each other in a way that others can't.

So, my first blog (of many more to come) is about the Alzheimer's Association Rockland Chapter and the support groups and meetings that they offer.  It is a wonderful resource for any family dealing with Alzheimer's and I urge you to get your care-givers to a meeting.They truly are bearing the worst of this disease and they need all the support we can give them.  I honestly don't believe my mother would be here with us today if she hadn't started going. She was running herself right into the ground.

If you have any questions about meetings or groups or any other resources from the Rockland Chapter of the Alzheimer's Association, you can call 845-639-6776 or email maria.paliotta@alz.org.

I'm also going to tell you about two exciting events coming up:

1.  Rockland Chapter Alzheimer's Association Luminary Ceremony - Sunday, Sept 9, 2012 at 7 p.m. at the Central Avenue field in Pearl River. Luminaries can be lit in honor of or in memory of a special person afflicted by this horrible disease for a donation of $10 (I'll be uploading pictures of this year's Luminary Ceremony next week.)

2.  - Sunday, October 7, 2012 at 10:00 a.m. at the Romano Student Center at the STAC campus in Sparkill NY - teams and individual walkers join forces to walk to raise funds for research towards a cure or treatment for Alzheimer's. You can go to www.alz.org/walk and find the Sparkill walk to register. It's a fabulous day for families and there is lunch, raffle prizes, and other activities

So, I hope you found this information helpful, and there will be MUCH more coming in later blogs. 

-- Siobhan O'Grady - a care-giver/daughter