Alzheimer's Disease - Shirley's Story Continued

Personal Stories

Read part one

The Long and Winding Road

We watched our beautiful mother slowly deteriorate over a period of five years. On July 23, 1999 she finally passed over.

We are not sure exactly when Mom began to slip from us. She had lived alone before we moved her in with us so no one knew how bad things were. I certainly had no idea how difficult it could be to care for my Mother. After all I loved her so very much and she loved me…how hard could it be?

In November of 1997, approximately two years after Mom’s AD diagnosis, I traveled to New York to get my mother and bring her to live with us in Hawaii while my sister; Carol, had a room built in her home for Mom. When we left New York Mom thought she was "going on a little vacation". She had no idea that she would never return to her apartment again. My sister in NY had the job of emptying out Mom’s apartment by herself. She had to decide what to keep and what to let go. How difficult and emotionally painful this had to be. How do you sort through 72 years of your mother’s life?

For the first time we were having to make decisions for my mother. She was slowly becoming our child.

I thought that Mom would do well with nutritious foods, lots of love and having us here to support and provide for her. I was so very wrong! The medical professionals that diagnosed her never prepared us for the long journey. The clouds were darkening on the horizon and the storm was brewing…. but it took several years for the tornado to hit full strength.

In May of 1998 we flew Mom back to New York to move in with my sister. Carol and her family cared for Mom in their home until June 7, 1999. At the end of the year the stress had taken its toll on everyone. Mom had changed in the year since I had last seen her. She lost weight, looked older than her years and her teeth had deteriorated. The disease had entered another stage. Mom was agitated and constantly wanting to "go home" to her "Mother and Daddy" (they passed away many, many years ago). "They need me," she would say adamantly! At times she would look in to my eyes and plead to go home. It was heart breaking.

It is so painful to watch AD take your loved one away. At times you feel as if the AD is pulling you down in to the depths of darkness and despair along with your loved one. It is frightening, frustrating and makes you so angry! You become depressed, feel isolated and cry a lot. It all feels so hopeless.

After a year and a half of struggling to care for Mom my family made a decision that we never imagined we would have to make.

Listening to family, friends and medical professionals we reluctantly agreed that Mom might be better off in a care facility with professionals that understood her illness that could take care of her special needs. Since Mom was physically well and still able to do things we wanted a place where she could remain active and participate in daily activities.

Letting Go

In May of 1999 I traveled to New York once again to look at facilities for Mom with my sisters. We researched and carefully checked out six facilities before choosing one.

We picked a beautiful brand new Victorian style home on Long Island - an assisted living facility. It had a special floor for the " Memory Impaired". They believed in keeping the residents busy (this was supposed to give them a purpose in their life) with things like helping to fold the laundry, sweeping, baking, planting and light cleaning. This was an interactive program and we were very pleased because Mom liked to keep busy. She had been busy all her life and wasn’t about to just sit still! The Innovative Program was designed to "take the journey" with your loved one…if they were looking for their deceased parents or things of the past the staff would converse with them as if they were still living in the past. They did not believe in orientating them to the present unless they chose to be there. The program’s principles of service were impressive… encouraging independence, preservation of dignity, nurturing the spirit, involving family and friends, offering personalized care, extensive training of staff and offering daily assistance in a home like environment. It all sounded so perfect.

Maybe too perfect.

We were attracted to the place because of their Christian values (which it was founded on) and their philosophy. The cost was $4500.00 a month (private pay) but we wanted the best care available…Mom deserved that. We truly believed we had selected the very best facility.

The day arrived when my sister had to take Mom to her new home. On June 7,1999 she put Mom in her car and drove her to the facility. I don’t know how she did it. I was very emotional all that week leading up to her move. I called the facility the very next morning after Mom moved in to check on her. I continued to call the facility every week to see how Mom was adjusting. I was devastated that we had to give up her care. I wanted our family to be able to care for her until the end. After all, Mom in all her struggles never gave up on us. Placing Mom in someone else’s care was the hardest most heart-wrenching thing we ever had to do. How could it come to this?

Going Home - Mom’s Journey

Within six weeks our biggest fears were confirmed. We got a phone call in the middle of the night from the executive director of the care facility that Mom had "died peacefully in her sleep." We were shocked and numb.

We suspected something was not right. An investigation was conducted at our request.

The care facility was fined for violations in the care of my mother and some staff was let go. Unfortunately we did not request an autopsy at the time so we will never know the truth about Mom's death. I hope that someday we will find out the truth about Mom’s passing and then perhaps peace will come.

A Twice Broken Heart

Our hearts broke twice… when we heard that Mom had died and then when we found out that she was not properly cared for. As a child of a parent with AD I have to live with this heartache. It is very painful and I still feel "raw" at times.

With as much love and care that we gave Mom over the years, I still felt as though we failed Mom in the end. I can’t help but wonder…if we had kept her at home with us if she would still be alive? At the very least we would have known the truth about her passing.

Looking back on it all, I believe that if my sister and I had a support system as Mom’s primary caregivers we probably could have cared for Mom in our homes much longer. If we had to do it over again we would not place my mother in someone else’s care.

Unfortunately it is too late to make a difference for my mother but my goal now is to help the struggling caregivers and make sure they are supported on their journey.

Earth Angels and Stealth Warriors

Alzheimer’s disease can take its toll on the entire family however the strain is most severe on the caregiver. Caregivers are in desperate need of a foundation/organization to assist them as they care for a loved one on their final journey home. Like a hospice for the terminally ill with cancer, Alzheimer’s patients deserve to have the same care options. AD is a terminal disease and patients should be allowed to be cared for and die at home with their loved one if that is the wish of the patient and the family.

Many caregivers are raising families and/or are working full time. They are exhausted, frustrated, and weary. They frequently experience feelings of hopelessness because they have no control over the disease. Caregivers experience symptoms similar to AD patients. They go through denial, confusion, fear, depression and resentment. Most of them have very little support or help from others. Even with a strong foundation of family and friends they can feel isolated and alone because people don’t know how to help. The caregiver is often too overwhelmed to even ask for help.

Resentment builds towards siblings because one person usually carries all the responsibilities (this often includes financial responsibilities). Family relationships become strained and may break under the stress. This is very sad because this is the time when they really need to support each other.

The caregiver’s job is an enormous undertaking and can last for many, many years. When they get home from their day job often the "second shift" begins as a caregiver.

What compounds the problem is the person with AD often may have reversed sleep cycles and wander at night (they tend to be active at night) which means the caregiver is up much of the night with their loved one.

The one thing the caregiver needs most (and is deprived of) is sleep. The next day they get up and somehow find the energy to go to work and make it through another day.

We must make people aware of the love, sweat and tears as well as the commitment and dedication that goes into caring for a parent or loved one with AD. We must open people’s eyes and hearts to reach out and help these caregivers…especially family members.

Family members need to give total support to the caregiver. They can help by being involved in all aspects of caring for their loved one. They need to contribute their fair share of responsibility including financial help when necessary. They must give the caregiver much needed breaks.

Employers need to know about the “angels and warriors” working for them. They can provide support to the employee by allowing them time off when needed and not penalize them for doing so. Many employers support parents when they need to go home and take care of a sick child. Caregivers need to be supported in the same way when it comes to caring for a sick parent. Seminars or videos brought to the workforce would serve to educate managerial staff on the struggles of the caregiver and the devastation it can bring to families.

Sharing My Ideas

My Mission is to educate and bring awareness to the world about caregivers and Alzheimer’s disease. The world needs to know what those afflicted with AD and their caregivers are faced with on a daily basis. We hear about heart disease, cancer, AIDS and all sorts of other diseases but you rarely hear or see anything about Alzheimer’s. We need to educate the public and bring awareness to this disease. It is long overdue.

My goal is to create an organization that can offer hope and support to the caregiver. The caregivers need to have a “hope line” to call when they are at the end of their rope - that would support their needs or link them to whatever help it is they need at the time. These caregivers need emotional and spiritual support as well as breaks and rest. They need a life outside of being a caregiver.

There is a need for quality care for these extremely vulnerable, special needs people who can't speak out if they are abused, mistreated or over medicated. Quality care would offer peace of mind to the caregivers so they could have a day or night off knowing that their loved one is truly safe and in caring hands. A shared database of good quality respite care helpers (recommended by others) would be a great resource of "care help" to call on.

Healing, Helping and Hope

My trials are over as a caregiver. I want to reach out and help other caregivers walking the path I traveled. I want to spread the news about these a ngels and w arriors that embark on this brave journey. They are truly angels on earth and there is an army of caregivers out there just struggling to get through each day.

My world has forever changed since my mother was diagnosed with AD…now I struggle to find peace with my mother's passing. She was our great provider and protector, our hero and the wind beneath our wings. She was a great lady who gave so much of her self to others, unselfishly.

Reaching out to help the "tired worn out souls" will allow me to continue to heal. If I can help them on their journey then I will feel as if I have truly accomplished something of importance in my life.”

If you’d like to discuss any of the issues raised here with Shirley, you can contact her via:guide4living@gmail.com

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