JOAN’S BLOG – TUES/WED, JUNE 8/9, 2010 – GUEST BLOG BY TRACY MOBLEY – HOLIDAYS ARE HARD

For new readers, I would like to clarify that there has been much upheaval and chaos in my life recently. Besides moving my father from RI to the ALF next door to me here in Florida, my husband’s Alzheimer’s Disease AND diabetes have been causing more problems than usual. I have been completely consumed with Dad’s care management and Sid’s confusion, additional memory problems, and diabetes flare up. It is for these reasons that Tracy’s Mobley’s Guest Blog, which refers to Memorial Day is being posted after the holiday.

Although Tracy’s blog specifically mentions Memorial Day, and also refers to Christmas, it applies to all holidays in which families get together. There is a reference in the blog to a subject we have reluctantly and guiltily discussed among ourselves – the desire for progression of the illness. At the end of the blog, I will write my comments in relation to Tracy’s.

Holidays Are hard

Celebrating the holidays is hard, especially when you have family in denial (Read Tracy’s blog on family denial). It makes the family group that you celebrate with that much smaller. The upcoming holiday is Memorial Day. My family did all of the planning and then invited my hubby, son and I as if we were guests. That really hurt. I felt that I should have been a part of the planning, I'm not that far gone. Because of that and them still being in denial of the disease, we have decided not to go to the get together that is this coming Wednesday. Who holds a get together on a Wednesday anyway?! My vote would have been a weekend.

Though I have decided not to go to the get together because of my family's behavior, it still hurts knowing they are there, but yet they are not. They will always be in my heart and on my mind, at least until I forget them. Maybe it sounds mean, but I can't wait to forget them because then the pain will be gone.

I hope and pray that when it is time for my son to start his life, that he finds a big family that accepts him for who he is and gives him the support he needs for having lost a loved one to such a horrid disease. I pray that he has lots of family to surround him in time of need and during the holidays.

My favorite holiday has always been Christmas, I love the lights and the music. I love putting up the decorations and the tree but I hate taking them down, it is a real pain. How I got to Christmas from Memorial Day, I have no idea. But it is just the three of us together celebrating as usual. I went to visit my Mother's grave the other day and wished that she was here to tell my siblings that she was wrong, that she really did believe in my diagnosis and maybe they would believe too. But what's done is done. Life is what it is and we have to live it as such. Always look forward to tomorrow as it will be a better day.

©Copyright 2010 Tracy Mobley  Tracy Mobley  was diagnosed at age 38 with Early Onset Alzheimer’s Disease, a diagnosis that has recently been specified to Frontal Temporal Lobe Dementia. Tracy has spent the last 7 years writing, speaking, advocating, and educating people on not only how it feels to have dementia, but how others’ actions toward the person with dementia impact their emotions. She has written a book – Young Hope/The Broken Road, and started a respite camp for children of dementia patients to be able to enjoy some fun and peer support – Camp Building Bridges.

Tracy’s blogs always give insight into what the PWD (person with dementia) is feeling and thinking, which helps us understand our own spouses with Alzheimer’s Disease. But there is always one thought or idea in her blogs that resonate with me more than any other. In this month’s blog, it is her statement that she wishes her disease would progress to the point that she forgets her family, so the pain their denial is causing will end for her. I find it incredibly ironic that we caregivers have expressed the same wish – the progression of the disease- for a variety of reasons -  that our pain at watching them decline will be over; that the endless physical toll caregiving is taking on us will end; that their suffering will be over; that we can rise from the Alzheimer quicksand that is sucking the life out of us, and yes,  that the disease will be so obvious that the family will finally come out of denial.

Tracy’s admission makes me wonder if some of our spouses are also wishing for progression, not only for Tracy’s reason, but perhaps so they can “forget” their anger, frustration, and “forgetfulness.”  

Alzheimer’s Disease/dementia seems to be the only disease that families deny. They have no idea the emotional pain their denial causes both patient and caregiver, making holiday and non-holiday family gatherings difficult for all concerned. If holidays and non holiday family gatherings are stressors for you because of family denial, give your relatives copies of Tracy’s blogs (Pain of the Heart) and this current one. Maybe her words will help them realize the hurt they are causing.

MESSAGE BOARD TOPIC: Tracy's June Blog

Feedback to joan@thealzheimerspouse.com

©Copyright 2010 Joan Gershman 
The Alzheimer Spouse LLC
2010 All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken.

The material included on this website contains general information intended as information only. This site is not intended to provide personal, professional, medical, or psychological advice, and should not be relied upon to govern behavior in any certain or particular circumstances. The opinions in the blogs are solely those of the owner of the website. The opinions on the message boards are not necessarily endorsed by the owner of this website, and are the opinions of those persons writing the messages. All material on this web site is for demonstration and informational purposes only.           

The Alzheimer Spouse LLC 2010 All Rights Reserved