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Submitted Decmeber 15, 2009  Administrator, Boise                                      Need for Person Centered Care
After 15 years of being an administrator for assisted livings, I know the business and care side of Alzheimer's disease.  I know the corporate stance, the family stance, and trying to blend both is difficult.  Now that I am providing education, and no longer working for the company, I am free to speak my mind and heart about the need for true person centered care for Alzheimer's residents in Idaho. 
Connecting with others who have a passion to change our medical model of care to person centered is my goal now.  There are not many of us here in Idaho, but more than you think.  There are connections being made all across this state with small groups of passionate and committed individuals who advocate for person centered care in all care facilities.  I am discouraged though, as it takes the buy in of the corporations - the administrators.  I can speak about this from experience.  I bought into person centered care, but the owners did not.  It's going to be a tough road to transition the majority of buildings to a person centered model of care...but I will never give up.
 
Submitted April 2, 2009, Son in Nampa Idaho
Lack of training and concerns

My mother was the staff's favorite...for a while.  They made an extra effort to provide her with activities that she would enjoy.  As a librarian, my mother worked with many files and papers.  The nursing home staff invited my mother to sit in the office managers room, and given a marvelous pile of papers to sort.  Of course they were un-important, but to my mom, she was helping and making things more organized.  The staff was exicted that my mother responded very well to this "office" activity.  This activity was on-goimg Monday through Friday and my mother was happy to participate.

                                                                              

After several weeks, my mother was accustomed to coming to "her office' and settling in for "work".  It became part of her own self initiated daily routine.  Things were going well until I received a call from the weekend staff, upset and recommending medication review - the reason?  My mother had found "her office" door unlocked on a weekend day, and "arranged and organized" all the paper on "her desk" just as she had for many weeks.  The weekend staff was not educated  to my mother's office activity, and the papers she re-arranged were critical administration information.  The weekend staff were very upset, tried to get my mother to leave "her office" and my mother refused.  The staff insisted, and my mother pushed back, and hit the aide trying to get her out of the office, "her office".                                                                             

On Monday, a care conference was called and the intervention for my mother's behavior of not obeying the weekend staff was to increase seroquil - and an assessment for additional "behavior medications".  The staff acknowledged that my mother had been involved in her "office activity" during the week days, but this fact did not deter the staff from making my mother accountable for her behavior.  This situation began the most intensive advocacy and protection  phase of my mother's care that would never end until she came home with me to die.

Submitted February 2, 2009 Daughter in Virginia
The Transition

I have been struggling for some time with what would be in the best interest for care for my mom. She has Alzheimer's and living at home with caregivers. My name is Carol.

I finally bit the bullet and (my husband made the call) and today, Sunday, was the transition day from my mom who was living at home and transitioned to a care home. All went well, when I left, my mom told me to "be a good boy" and gave me a kiss. She was holding one of the other residents "black baby doll" and sitting with her feet elevated in a high tech electric lazy boy recliner. This is no ordinary home. It looks like something in Better Homes and Gardens and the little ladies there, (seven including mama) just sit and smile.

The caregiver from the new home called tonight to tell me that mama ate a good dinner, got ready for bed and snuggled up under her blankie while the caregiver held her hand and sang "Amazing Grace" to my mom. To think that the caregiver took the time to call me and reassure me that all was well, speaks volumes. She said she could see that I was struggling with leaving mom there at the new home, and that's an understatement. Losing Daddy to cancer was hard, losing your mom while she is still here, well, that is another story. She has gotten to the point that I am her "little girl" and she wants to go home but doesn't know where home is.

I have been blessed with wonderful caregivers who cared for my mom at home, well, for the most part. There were a couple of duds but all in all it has been good. One caregiver has stood by us the longest, almost four years. She has seen mama regress and get more quiet and hold less conversations. She is a precious woman and I will be the first to say that I hold her in high respect and regard her as a sister. I can call her and pour out my feelings and she always listens and gives me wonderful advice. (Even about the manure pit, that was the best).

My loving friends have continued to send me wonderful emails that make me laugh and make me cry, but in a good way. And so many others have listened to me confess feelings that I just couldn't keep bottled up inside for fear of exploding. Last but not least is Linda, a wonderful neighbor to my mom and probably one of my best friends. She has really heard it from me and kept objective. She, too, has been there for me, checking on mom and the caregivers and helping them stay sane. To anyone who has given a kind word or even thought about us in the last several years, I thank you. This has been a hard pill to swallow but with a lot of prayer I think it will be for the best all the way around. P.S. And yes, I was listening when you told me that this would be a new adventure or chapter in mama's life. Love you and hugs from across the States. xxo

Submitted February 1, 2009 Idaho State Employee
The Dance

Every Saturday, I go to the Idaho Falls Senior Center and dance, dance, dance. I love to dance. Everyone there enjoys the music so much. Last month, a woman named Alice came to the Senior Center that was suffering from dementia. She could not talk, could not walk, and seemed lifeless. Alice's daughter brought her mother to listen to the music. Benny Goodman, Arty Shaw, all the great ones. Alice sat in her chair in her own world. As soon as the music started to play, Alice cam alive. It was a miracle. She began to lift her head, opened her eyes and smiled. She looked straight at me and smiled. It was truly a miracle.

Submitted January 10, 2009 Daughter in Prescott Arizona
Reality Shift; Living in My Mother's World

On May 18, 2001, I received an emergency call at the Spokane Airport after just arriving from Arizona. This was my eighth trip there to help my mother "adjust" to the nursing home of her choice.
At the other end of the phone was the director of mother's nursing home in Arizona explaining their dementia policy and that my mom, Mel, was being dishonorably discharged from their facility tomorrow for violent behavior.

Immediately after booking a flight back to Prescott, I sat down in the baggage claim, with all the baggage, and stared at the advertisement for "Peace and Tranquility at the Spokane Red Lion Hotel". The reality of what was happening softly poured over me like warm honey. Knowing somehow this was my job, it felt ok to be asked to help, and there would be sweetness in the experience but I was stuck. There were no answers, no clues of what to do, where to go, or who could help. Visions of Mel and me standing on the steps of the nursing home looking out into the city with no place to go seemed very real.

This was the beginning of my journey into the "caring for a parent who no one
suspected had Alzheimer's" world.
Upon arriving at the Pioneer Home, the care staff had already contacted the Margaret T. Morris Center, a residential setting for people with Alzheimers. The Director of Nursing at MTM met with me and reviewed Mel's case. Through streaming tears and uncontrollable sobs, I asked for help. Help for mom, for me, for understanding what had happened. I begged for help in every aspect of my and Mel's life as we were surely unraveling at that very moment. The next instant I felt myself being guided to a soft chair and a cup of fresh hot soothing coffee placed in my hands. Relaxed into the deep cushions, I heard a calming voice softly say everything was going to be ok, and Mel was fine and being cared for. I felt as if God and the nurse were one.

The next day, the best Alzheimer's physician in the Southwest was called to examine Mel and a diagnosis was made. This allowed more help to come and brought clarity about the next decisions. Mel was placed at the Margaret T. Morris Center for Alzheimers and remained there for two years. Mel was skillfully, professionally and lovingly watched over in my absence. This was my first introduction to Person Centered Care.
At the time my mother was admitted, I did not know MTM or screening of the MTM center or any knowledge of quality care provided. I trusted that the helped asked for was right for us. As things go, the Margaret Morris Center was and still is the leader in Alzheimer resident care in the Southwest. Their facility is nationally known for innovative and progressive, person-to-person care philosophy.

There were no interferences with receiving the help asked for, because I trusted those asked and did not have pre-conceived expectations of what that help needed to look like.

Looking back on this painful event, it was only part of the bigger picture of what is to come. Asking for help is easy, as I know my limits and vulnerabilities. Asking for help that day positively transformed mom's and my life forever.