Sunday, March 6, 2011

I Didn't Know

"You or someone close to you will probably develop Alzheimer's at some point. More than one in five women and one in 10 men will develop the disease. A person who has Alzheimer's will eventually be unable to manage his or her own affairs and will be entirely dependent on others for care. It is a progressive disease, which means a person's condition will never improve and will only get worse."

I was not prepared for this disease either cognitively, emotionally, or financially. Call me ignorant, but I did not know the correlation of DS and AD until 2002 when my sister was initially diagnosed with Dementia of the Alzheimer's type common to Down Syndrome. Her earliest symptoms included psychotic hallucinations and delusions. She was 51.5 at that time.

When Lizzie and I moved into our home 7 years ago, life was so much fun because her symptoms were amusing, and she was still engaged in me as her housemate, sister, and friend. However, as the years passed by and when I realized what was happening as I began to see her deteriorate cognitively more and more every week, I fell into the grieving process as I realized I was witnessing the loss of my sister and best friend. The depression was so intense I found myself isolated from everything and everybody in my life except my job and my home life.

I struggled to find sufficient caregiver help so I could get to work in the morning and run necessary errands in the afternoons. This drained me financially, and I have no doubt I will go to my grave with the enormous debt I have accrued for Lizzie's care. Interestingly, I met a man (online no less) who has a disabled son. It was this man who informed me of what benefits are available for the disabled, and so I began my quest for state benefits/help for Elizabeth. That in and of itself will be the topic of another blog SOON because those of you in similar positions NEED to know the game I wasn't invited to play by this state's social worker assigned to my sister's "case" in 1987.

I am certain my parents did not know about this either. I remember our dad once telling me that if anything happened to my sister, that she would be able to live at the VA inpatient home because he was a WWII vet. I have no idea what he was thinking at that time because no such option exists for his disabled dependent.

I think I will take a blogging break because I have written a lot today and am feeling "scattered" in my thoughts and reflections.


  1. This is Joyce. I really don't know what to say other than I just spent some time reading your blog and I will certainly add you to my nightly prayer list. You have quite a lot on your shoulders my friend. I pray for your strength and guidance during these dark and lonely days. I hope you are able to find a placement you are comfortable with for your sister and that you may get some much needed respite. I have written a few posts about Alzheimers and DS, but your personal account is profound. I thank you for sharing and please know I am thinking of both of you.

  2. I thank you, Joyce! I just visited Sarah's blog. WOW! Who is Sarah to you? Many blessings to you, too!