One of those miracle days!!

Yesterday I had a wonderful, fulfilling day!!  In the morning, I spoke to the 'caregiver support group' at Leeza's Place in Melbourne.  It was a thrill to see my old friends and to meet new ones. Afterwards, we went out to lunch with my dear friends Chris and Carlee, and after we finished eating Carlee and I danced in the parking lot of Applebees (Carlee has Alzheimer's and Parkinsons). He laughed and had so much fun!  Then I went to visit another dear friend, Vinnie, at the nursing home. He is in the last stages of Alzheimer's and was not very responsive. He showed no signs that he knew who I was but I talked to him, hugged him, and just let him know that people loved him. It was kind of sad, but there were flashes of enlightening moments and I am so glad that I saw Vinnie and spent some time with him.

In the afternoon, Mike and I went to see the kids, and we all went to the pumpkin patch so that Giada could pick out a pumpkin. The day was filled with joy and sadness. It was one of those miracle days!!!

Whirling ideas

Aye, aye, aye, there are so many ideas whirling around in my mind.  I am so passionate about helping family caregivers and I want to do so much.  My primary goal is to raise funds to get my foundation up and running. Julita's Memorial Foundation is set up to give assistance to family caregivers of loved ones suffering with dementia/Alzheimer' Disease.  I started this foundation in honor of my mom. To me, this means she didn't go through the turmoil of dementia in vain.

Anyway, my idea is to organize some kind of crazy fundraising stunt. I know I can get throngs of people to get involved and together we can raise money for the foundation. Then my dream is to give money to someone who is in need, someone who has goven up everything to care for his/her loved one.  I know I can do this!  Our book, Julita's Sands: A Memoir is currently available on amazon.com, barnesandnoble.com and everywhere books are sold. I have already allocated 50% of the preoceeds from sales to the Julita's Memorial Foundation.  Please get your copy and support the cause!!!!

Loving it!

I am so loving the pouring of family caregivers and dementia patients into my life. They are coming to me in flocks, bearing their souls to me. I am a shoulder for them to lean on. O am an encouraging word to them. It is so fulfilling and I am honored that these new friends have the faith in me to tell me their stories. Each and every one of them is special to me and I pray for them everyday.

I was afraid of that!

The body that was discovered right near the caregiver's home in South Daytona was that of Goldie Robinson, who had been missing since July.  I can't understand why it took so long for the police to search the area, especially after finding the body of Arthur a month ago. http://wdbo.com/localnews/2010/09/new-autopsy-back-in-the-missin.html

The "after" life.

You know, so much is talked about when it comes to family caregivers of loved ones with Alzheimer's and other dementias. There are many resources available to these caregivers, which is a good thing.  But there is one area of caregiving that is sorely neglected.

I am talking about "after" the loved one dies.  There are virtually no resources or information on the grieving process of the caregiver.  I lost my mom over three years ago and I'm still, at this time, coming to terms with it all.  This morning I was chatting with someone whose mother just passed away on the 16th of August and she was telling me how completely lost she feels.  It is very difficult for the non-caregiver to understand what happens to someone who is caring for a parent who is suffering from dementia.  Maybe I can paint a picture for you.

A family caregiver's essence, both mental and physical are absorbed by the patient.  They meld into one being. At least that's what happened with me and my mom.  Caring becomes the caregiver's life.  When the patient is no longer there, something happens.  An emptiness sets in and the caregiver feels like he or she doesn't belong anywhere.  They can't seem to enjoy the hobbies and activities that used to bring joy to their lives before caregiving.  For some reason it is hard to get back to doing those things again. 

After my mom's death, I had an overwhelming urge to help!  Maybe it was because I had no support group, my siblings pretty much left me out in the cold.  Thank God that there was a Leeza's Place nearby, which, by the way, I knew nothing about until I looked for volunteer opportunities.  Volunteering was very therapeutic for me. 

I am on a mission now to help family caregivers.  I am putting together a resouce guide for those who are on the journey now, but my primary goal is to come up with some kind of resource for those who are on the "after" life journey.  I am talking to other former family caregivers to find out what they did or are doing to get on with their lives.  Talking and brainstorming with others will help me put toether valuable resources and aids for others. 

A world issue, not just an American one

We are pretty fortunate here in the United States of America, in that there are many resources available to families and patients with Alzheimer's disease.  The numbers are staggering here with over 5 million people facing the disease, and the majority of caregivers are family members. Naturally, this is an monumental strain on finances, emotions, health and social activities for those caregivers.  In the past three years or so, there has been much more awareness brought to this epidemic and more and more resources and help has blossomed.  I believe that caregivers have a much better chance of knowing where to go for help, whereas when I was in that situation, I didn't.  So, the awareness is a good thing, although there is still much that needs to be done for family caregivers.

I have friends in Italy who are struggling with the rise in Alzheimer's patients. There, they have no facilities to provide 24 hour care to these patients. There are no assisted living facilities or nursing homes with staff trained to care for Alzheimer's and dementia patients. The burden falls directly on the families.  There is an adult daycare facility in Caltanissetta that just opened a month ago and they are fighting the state to keep it opened.  The funds are there but the State doesn't deem it necessary enough to provide contiuous funding.  This is absurd!  How are families supposed to find the time and enery to work, to provide for themselves if there is no place for rtheir loved ones and no opportunity for respite care?

I am an advocate for caregivers.  I am also a proponent for keeping the loved ones at home.  I don't like nursing homes (that should be a last resort), because the care there is provided on a cookie cutter basis. There is nothing like a loving child, spouse, brother or sister.  I'd like to see trained, skilled caregivers who, most importantly are sincere, tender, and loving to come into homes and relieve the family member.  I'd like daycare facilities to be available to family caregivers.  How can this be accomplished?  I'm not so sure that money is the answer because I have seen and heard so much about caregivers abusing and mistreating the elderly.  It has to come from a heart filled with love and passion for the elderly.  I wish I knew how to do this. I would love to help those suffering in Italt, as well as those here in this country.

Thinking out loud

It is easy for a person suffering with dementia to be cast aside by family and friends.  Unfortunately some people just don't want to deal with the situation or maybe they can't face it.  But family caregivers are cast aside too.  They lose social connections and social activities because of their time constraints.  Life takes a different turn and many times the family caregiver is alone.  The computer age has brought about social networks and support groupsonline, but there is nothing like personal affection and attention.