As I struggle to control my emotions enough to write a coherent blog about placing Sid in a nursing home, a new opportunity has presented itself for me. As those of you who follow my blogs know, I had to put my advocacy work on hold when I could no longer leave Sid at home alone, and caregiving took its toll on my mental and physical health. Ironically, just as I got the approval for nursing home placement, I received a call from my Alzheimer’s Association Southeast Florida Chapter Advocacy and Public Policy Coordinator. I was being invited to a special meeting with our new Congressman, Patrick Murphy, to speak about the financial and emotional toll Alzheimer’s Disease takes on a family, as well as the bureaucratic nightmare of a process Medicaid makes families endure. The meeting is tomorrow morning, Tuesday, August 20, 2013. I am looking forward to it, and will be sure to report back to you with the details.
I am so delighted that you have been selected to represent us. I truly believe that God allowed your trials for a purpose and you're a true servant for the cause.
Joan -- there couldn't be a better spokesperson than you to advocate for all of us. Thank you for giving so much of yourself to educate our government about what we all so desperately need. Hang in there!
You deserve to feel Soo proud of the extraordinary path you have taken as an Alzheimer spouse. You will never know how many people's lives you have touched.
Now, in the midst of your grief, you are willing to continue the fight for others. Sid would be so proud of you and grateful for all you have done for him .
The political breakfast I attended this morning was arranged by my Alzheimer’s Association political liaison. There were about 20 people invited ( 4 at a table). 7 of us had been pre-selected to speak to our congressman about one particular Alzheimer issue related to our own experience. My topic was, as you can imagine, Medicaid approval related to Nursing Home placement.
In order not to break my own website rule against political partisanship, I will try to keep my comments strictly related to Alzheimer’s Disease. The main points presented were:
The overwhelming burden of 24/7 caregiving and the toll it takes on the caregiver’s physical and emotional health
The need for “in home “ help for caregivers
The “broken” Medicaid system that is set up to deny services to save money
The need for more research funding
The need to educate doctors and the community about dementia
The main theme was the desperate need for caregiving assistance.
As has been my experience during my 3 years as delegate to the Washington DC Alzheimer Forum, backed up by our member, MarilyninMD, who attended the 2012 Forum, politicians are moved by personal stories, and Congressman Murphy was no exception. He told us that it was emotionally difficult for him to listen to our stories, and shared that his grandmother was just diagnosed with Alzheimer’s Disease. (He is the youngest member of Congress at 29 years old). He is definitely in our corner, but of course, is stymied by the partisan bickering that is currently paralyzing Congress. (Disclaimer – I am not taking sides – no matter which side you are on, everyone agrees that Congress is stuck in the mud)
On a personal note, having been away from conferences, seminars, and advocacy work for 2 years, it was nice to dip my toe back into the water and engage in intelligent conversation. However, after such a long time “out of action”, it was scary and uncomfortable. I feel as if I have been cooped up in solitary confinement, and it will take awhile for me to fully assimilate back into normal society.
It was an hour drive each way, and I was exhausted when I got home. But I did have the luxury of being able to lie down and rest without attending to any caregiving duties.
I imagine it is indeed emotionally difficult to hear peoples personal pain. It is no longer a paper with unknown faces to the numbers. It is such important work, though you might have found it a bit scary and uncomfortable, I have no doubt you did a fantastic job! Kudos Joan, and thank you ((hugs))
Glad you went Joan, and it was great that the Congressman has a personal connection to AD (although a grandparent, no matter how dear, isn't your spouse). Still, I'm sure it made the advocates' stories more real to him.
I'm very glad to know that your voice was heard, Joan, our wonderful advocate. More caregiver voices need to be heard ... often and regularly ... to educate politicians about our world as Alzheimer's caregivers and what needs to be done to improve our world.