Monday, March 21, 2011

Turn Every Two

On Saturday, Mike started coughing when we put him into bed. It was a productive cough and I didn't think anything of it. Then a few hours later, the fever came. It was so high, I was afraid to use the thermometer for fear of the number it would read. Mike's face was beat red, his breathing was fast and he was moaning. I gave him alcohol rub downs all night while I was turning him. I set my cell phone for every 2-3 hours so in case I fell asleep, I would get up. Moving him from side to side was difficult because I knew no matter where I put him, he was resting on a pressure sore.
As I was cleaning him Saturday night, the sore on his bottom got worse and it opened up. It looked terrible. Now, there was no SAFE PLACE. Both sides AND his bottom had pressure sores and there was nothing I could do for him.
Last night I also turned him every 3 hours and gave him Tylenol for the pain.
Today, the sore on his bottom opened even more and I called Hospice to send a wound care nurse - this hospice doesn't have wound care. Huh. His nurse said she would come and give me a call when she got call yet. I'm sure she's been there and gone already, it's just the way it is.
I'm tired.

Friday, March 18, 2011

My Life

Mike is still fighting off the pressure sores. He has one on his left shoulder, one on his left thigh and one on his right thigh - which makes it all the more difficult in positoning him at night. No matter which side he is on, he will be putting pressure on an already open sore. Lying him on his back would be an option right now, but we were JUST able to finally heal that sore. Everyday we do the best we can to make him comfortable and in as little pain as possible. I look at these sores and imagine what he's feeling. You know how you feel when you get a paper cut. We have been asking hospice for another piece of "egg crate" foam as additional cushioning, but after one month, we still have't received it. We had one, but it lost it's height and was really doing no good. Tomorrow I guess I will head to the fabric store to see what kind of foam they have there that I can use.
I have a little mystery in my life - after our story appeared in Newsday, we received some donations. Among them was a money order sent by "FC" - no return address, no name. They stopped for a while, but they started coming again. I am writing here with the hope that maybe it's someone who reads my blog. If so, THANK YOU!! This person doesn't send checks (they would have a name on it), they don't include a return address or even a signature...just FC. This person is a true angel, giving without fanfare and wanting no thanks.
We recently had another one of our Young Onset Support Dinners - which we haven't had in months. The gentlemen who pays for these dinners lost his wife to the disease and then the holidays came. It's sad meeting up with these spouses after a big space of time - most told stories of decline. And even though these are all "Young Onset" spouses, I am BY FAR still the youngest person at these dinners. I can connect with them on some level, but I still feel out of place at other levels.
I was contacted by another reporter for Newsday yesterday and we spoke for a quite some time last night. Last night I realized that each and every day, I get up and do what I have to do without even thinking about it half the time, but when I speak with others about my schedule and what my day entails, and where my life is now, it's depressing. I get through most days without REALLY thinking about what I do, but when I am confronted with the reality of it, I realize how other people can be shocked by it.

Sunday, March 13, 2011

New Lay-Out

Yes, you're at the right blog. I had asked Courtney to help me change the heading of the blog with old and new family photos. I wanted those unfamiliar with our story to realize how this disease can change an otherwise young and unsuspecting family. Simple request, right? Well two hours later we came up with this new design. We went through numerous choices for lay-outs, fonts, title and color. It's nothing fantastic or state of the art and I will continue to represent Alzheimer's by using the color purple . Courtney suggested that I update my very old and "boring" blog hope you all like it. I do.

Saturday, March 12, 2011


I received some emotional messages on my last post. A simple comment about having to divorce a spouse in order to keep your assets opened a can of worms.
Bottom line, none of us would CHOOSE to divorce our spouse unless we were left with no other options. Had I known back in 2001 what I would be going through today, I would have seriously considered divorcing Mike, BUT ONLY ON PAPER, in order to save me from the heartache I'm going through now. People divorce for many reasons, but divorcing to protect my husband to make sure he gets the services he deserves, and ensure that my children and I wouldn't be left destitute, may not have been a bad option. When our Elder Law attorney mentioned it, I cringed, I couldn't even think about it. What a sad state of affairs it is that we have to proclaim to the government that we no longer choose to be married to our ill spouses, in order to make sure we are all taken care of.
I DID choose to file a "spousal refusal" at the time and that even weighed heavy on my mind.
Today I have the Alzheimer's Association working diligently with an attorney (who's handling our case pro bono) in trying to fix our problem. This is a very prominent Elder Law attorney who we worked with when we appeared on his local television show. He was so angry that the government is basically punishing us for taking care of Mike at home. We will also be having a meeting with the Senator we met in Albany for the purpose of making him aware of what's happening and what families like ours have to endure when there is a catastrophic illness in a family.
I sincerely pray that this situation will bring about some positive changes.

Wednesday, March 9, 2011


Once again, I find myself having a VERY difficult time while I fight every step of the way EACH AND EVERY DAY for services and assistance for Mike. As empowered as I was last Wednesday when I was up in Albany with Courtney and Brandon, I became even more dishearted the next day when I went to the Fair Hearing at Social Services for Mike.
Bottom line is this: unless you are a millionaire when you or a spouse are diagnosed with a catastrophic disease, there is no one, not even our government that can help. You either have to have everything or nothing - there is no in between. The judge told me that while he may not agree with the rules, he still must follow them.
So here I am, thousands of dollars in debt to our home health agency, no health insurance for Courtney or myself and no where to turn. Apparently my government doesn't care if I lose my job because I decided to keep Mike at home. If I cannot afford the $1,200.00/month they feel I can pay for Mike's aide, then I will need to stay at home and care for Mike myself...which means I will lose my job...which means I will lose my home...which means my entire family will be homeless and on the street. That's EXACTLY what they are telling me.
Something is VERY wrong and it needs to be fixed. I am telling the world my problems, not for sympathy, but for the sole reason to raise awareness. We need to think more carefully when we vote for elected officials. We cannot assume that our government (no matter what state you reside) will be there for us when we need help. What hurts me the most is that I am saving New York State thousands and thousands of dollars a year by keeping Mike at home and out of a nursing home, yet they DO NOT CARE. Times my thousands and thousands by all the other families caring for sick loved ones at home and that's a s*%t load of money. Now times that by families in other states....shouldn't we be elligible for some kind of assistance, if by the off chance we are not millionaires????
I'm not even getting into the fact that my children have worked their butts off in high school and college to keep up their grades, despite all their hardships, sacrifices and losses...yet they are only eligible for minimal government grants. What kind of message does this send to them? To any child out there who is struggling despite difficult situations at home, who doesn't happen to be a minority.
I am bitter, I am angry and I am scared. I do have some people who are trying to change decisions, but I am not hopeful. And even if those people DO move mountains, what happens to the others out there who don't have connections??? My heart is breaking..for so many reasons.

Wednesday, March 2, 2011

Visit to State Capital

Today the kids and I went to Albany to meet with our Legislators and Senators for the purpose of asking for their support in limiting cuts to programs beneficial to Alzheimer's patients and their families. As we did in Washington last year, we told our story - over and over again - in all day meetings. This is what needs to be done in order to show the people who make these decisions, that Alzheimer's is a REAL problem and unless something is done soon, each individual state as well as the US Government will become bankrupt in trying to care for Alzheimer's patients.
Some facts:
In NY, the state pays approx. $1,100.00 a year to care for AIDS patients - but only $.70 for Alzheimer's patients.... and if our state continues to cut the programs offered by organizations like the Alzheimer's Association, instead of investing $850,000 a year, it will cost them approx. $14,000,000 a year. Out of the top 10 deadly diseases, Alzheimer's is the only one where the death rate keeps rising (lack of funding for research) and every 70 seconds, someone is diagnosed with Alzheimer's Disease. Alzheimer's Disease is the only disease that has no cure or medicine to slow the progression.
While in Albany, I was awarded the Frank Carlino Advocate of the Year Award. I was truly humbled and honored to receive an award named after a fellow New Yorker who, like Mike, had been diagnosed with Young Onset Alzheimer's and worked tirelessly as an advocate.
The above pictures show me with the award as well as me and Courtney and Brandon with NY State Senator Jack Martins.