A Letter From A Caregiver

The silent scream fills my head again.  It has snaked its way through crevices into my consciousness; it fills my ears from the inside.  Two days, lost! I am so tired, too tired to sleep yet too tired to continue searching.  I have lost, at the least, days of work and days of sleep.  I have lost many more important things than these.  I have lost hope and I no longer dream.  I have lost the knowledge of what it is like to sleep through a night or not worry while at work.  I have lost the joy of what life should be.  I have lost my sense of security and faith.  I have lost friends because I could no longer be a good friend.  I drift from day to day with the thought that this will happen again and again as it has before.  My father is missing, he has Alzheimer's.

With these loses I have also gained many things:  a bottle of antidepressants, a sense of dread and inadequacy.  I have gained fear and anxiety; will this cost me my job?  I am an educator and being found unfit to care for my father deem me unfit to care for children.  Will I no longer be able to teach, the thing that sustains us financially and me emotionally.  It is my sense of worth, my contribution to society and community.  I can tie their shoes with out swallowing the cry that tries to escape when I have to tie my father's.  I have also gained a constant feeling of doubt.  I have gained the knowledge that I will not have a family of my own because I have sacrificed it to care for my father.  What else was there for me to do, I am what he has and I do not know what else to do. 

I have had to report him as a missing endangered elderly person many times now.  Local law enforcement has been an integral part in my father's safe return.  While many have given these service with concern and courtesy, many have not.  I have been turned into DCF by a police officer that said he wanted to help me.  I have be berated by one law enforcement officer for following the directive of another.  I was called by an officer that had worked a prior disappearance and with a tone of condescension was told, " So, this has happened again.  What are you doing about it."  I hear the disapproval in voices and see the sideways glances.  Many times the things people think are whispered can heard and are hurtful.  I am one person trying to care for another the best I can.  I have lost my sense of dignity trying to preserve his.

I struggle because it is what is best for him at this time.  He is in the twilight of this disease, still competent enough to consider himself an independent adult, but beginning to require more than I may be able to give.  Everyone's solution is to place him in a home.  Sounds great and oh would it be easier for me.  But, he is not a good candidate for this yet.  If I forcibly commit him one of two things will occur.  He will become violent to try to gain his "freedom" then be drugged into manageability or he will sit in a chair and stare into the distance until he wills himself to death.  I am shellfish; I do not wish to live with the guilt of either occurrence until I draw my own last breath.  I am also trying to abide by his wishes.  He has always said that he never wanted to be in a nursing home, he would rather be dead.  I am trying to hold on until it really doesn't matter to him where he is.  I no longer know which way to go.  His safety will become a concern very soon.

I am in my mid 30's, an uncommon caretaker.  I am not a spouse; I am not near an early retirement.  I do not have the luxury of quitting my job, I must continue to work.   I am frustrated by all the things I cannot do.  I live in a hovel that I am afraid to spend money to fix.  I do not want more debt incase I lose my job or am forced to quite and be a full time caregiver.  This in turn keeps me from becoming a foster parent and so on.  But, these frustrations and worries are small in the scheme of things.  I can only begin to imagine what my father is experiencing.  To slowly begin to lose yourself, to know something is wrong but not be able to put your finger on what it is.  To be lost and to be embarrassed to ask for help, maybe if he keeps walking and looking he will find his way.  He knows he should be able to, he should know how to do something as simple as find his way home.  To be lost and hungry, to be confused about what to do.  How it must make him feel when I have to tie his shoes or help him get dressed.  His frustration and fear must be on a scale of such magnitude.  This is how I get through my day, I think how much easier this must be for me than it is for him.

Consider this, 20% of Alzheimer's/Dementia patients who wander away and become lost, when located are dead.  We seem to value cars more than people.  We have LoJack in hundreds of thousands of vehicles and equipment.  There are multiple patrol cars in law enforcement agencies that are equipped to locate those vehicles.  The technology is available, if not well known, to locate people.  Be aware that you can, in conjunction with your local law enforcement agency, become part of a location program called Project Lifesaver.

There are so many obstacles and advice but so little practical help for some.  I am writing because there is almost nothing I, as one person, can do.  The Project Lifesaver must be done in conjunction with a law enforcement or community agency.  So, where would I begin to bring Project Lifesaver as resource to my local community?  I would like more people to know about this program and what it could do for those with Alzheimer's.  Imagine being able to find your loved one in 30 minutes instead of 30 hours, to find them alive.  This should be implemented in every community where there is a need.  I need help, I am desperate, I am tired, as I'm sure many other caregivers are.  I know that there is probably nothing that can be done in time to help me, but if my trying to bring resources and information to the public will help others in the future that is my mission.

Thank you for taking the time to read this letter!

Sincerely,

Leslye Mann

PROJECT LIFESAVER

AND

ALZHEIMER'S FOUNDATION OF AMERICA

Together, we can change the face of care.

Please support the Alzheimer's Foundation of America

 To learn more about the Alzheimer's Foundation of America, visit their website at www.alzfdn.org  

  To visit Vantage magazine website, go to

www.AFA-Vantage.com

MORE THAN TECHNOLOGY

Project Lifesaver is about people and partnerships. The focus is on communities where law enforcement, civic groups, local business and caregivers join in developing and strengthening all aspects of the program including rescues, education and especially fundraising so that families in financial need can have the protection, and peace of mind. 

Project Lifesaver teams are specially trained, not only in search and rescue and the use of the electronic tracking equipment, but also in the methods necessary to communicate with a person who has Alzheimer’s disease or related disorder. Locating the individual is only part of the mission.  The person who is located will be disoriented, anxious, and untrusting. The Project Lifesaver team knows how to approach the person, gain their trust and put them at ease for the trip home.

THE PARTNERSHIP WITH LAW ENFORCEMENT

Project Lifesaver saves lives and further serves the community by significantly reducing the need for extensive search and rescue operations that are extremely costly in terms of human and financial resources. Searches for wandering individuals that have taken days and scores of searchers can be successfully concluded in less than an hour if Project Lifesaver is available in the community.

This partnership and the program’s effectiveness and reliability has earned Project Lifesaver the endorsement of the National Sheriff’s Association

Sheriff's Office Project Lifesaver Unit locates missing client riding on a bus.

Snohomish County Washington - May 17, 2005

Our PLS team was activated to locate a client who is 79 years old, Romanian (speaks no english) and is a midterm Alzheimer's patient. The caregiver indicated that he was last headed for a bus stop near their home. Inbound units were advised of this and routed into the scene on major bus routes. One northbound unit picked up the signal on a southbound transit bus as it passed him approximately 5 miles from the point last seen. The search unit turned around and followed the bus until dispatch was able to contact Community Transit and have the bus stopped. Deputies boarded the bus, located the client and returned him to his home. Recovery time from the start of the call was 20 minutes.

Hi Teresa,

I wanted to thank you for the three days of training here in Kalamazoo. I feel revived and excited again about my work.

I would very much like to explore further training opportunities and possible involvement with your organization in the future.

Mike Descheneau, Vicksburg PD