Support

One of the first things I heard about support groups was from the doctor.  He was adamant that I could not face the challenges of this disease without support from family and others who were caregivers.

So it was that early after the diagnosis, I took that advise.  There was a group meeting close to my home so it was easy to attend the weekly meeting in the evenings.  Dennis knew where I was going but he was not interested in attending.  What I found was a leader with understanding, compassion and heart for those living with this disease in their lives.  There were pamphlets, brochures and books providing a wealth of information that helped me better understand what was or what was going to happen. 

The meeting itself would average about 15-20 people sitting in a circle taking turns sharing their week's experiences and validating one another regarding the challenges both physically and mentally.  I was only 54 when I attended that first meeting.  The people in the room were 65-80 years old.  They were speaking of care challenges for an elderly spouse or parent.  Their stories were sad and I could see the toll it was taking on their individual lives.  By the time it came to me, my story seemed insignificant.  My husband was still functioning at his work and our lives were still "normal" with few adjustments.  I left more depressed and overwhelmed so it soon became apparent this was not a good support for me -- although it was invaluable to others in attendance.  Our challenges with early onset alzheimer's were different.

I later contacted the Houston office for Alzheimer's to ask if there were any support groups specifically for Early Onset Alzheimer's.  I was guided to an Early Stage support group that was soon to start.  This was a group with couples who met together and then break-out sessions.  This sounded more like what I wanted so we attended the first meeting.  When the group gathered, it didn't take introductions for us to realize these were couples in their mid 70's.  Keeping an open mind, we listened carefully and followed the agenda for the meeting.  By meetings end, it was clear that early stage just meant they had recently been diagnosed and were just starting the journey that we had traveled for four years at that point.  Our issues, our concerns, our questions and our needs were not the same.  Seemed crazy to me that there was not a network for younger couples, individuals with this diagnosis. 

Time passed and I once again searched for meaningful support on the Internet.  I joined chat rooms where caregivers and those diagnosed wrote openly of their sorrow, their challenges, their experiences and the progression of the disease.  I just read the posts and did not join.  I was not ready.  But after a time, I needed more one-on-one answers to questions.  Through the Internet I was connected to the Early OnSet Alzheimer's program in Oklahoma in 2004.  The contact person I spoke with was like an angel from heaven.  The timing was perfect!  In a few months they were holding a conference in Tulsa.  She explained that it would be a perfect way for me to network with others; find valuable resources; and actually hear from some leading research scientist.  She sent me all the information and registration -- plus she suggested I apply for a scholarship fund that would pay for the trip and the conference. 

The conference was my first experience with others who fully understood the early onset issues.  It was at that conference I first heard about the Safe Return program.  It is a national registry program to assist if individuals wander and are unable to give valuable information for their safe return.  Once registered, the individual wore a medallion or bracelet at all times.  The caregiver would also wear the medallion (in our case) in the event the caregiver is injured (it alerts respondents that this is an alzheimer's caregiver).  In addition, I attended workshops regarding various community resources that were available.  There was an Internet registry for chatting and keeping in touch to support one another through the issues we would face.  And best of all, we heard from the research specialists out of Bethesda, Maryland. 

After the research presentation, Dennis and I waited patiently to speak with the doctors.  Willing listeners, I was able to tell our story and background and share my confusion.  After hearing our story, it was obvious to them that Dennis did not fit the profile that they normally attributed to EarlyOnset Alzheimer's.  They went on to explain all the diversitfied characteristics of dementia and various misdiagnosis.  Obviously they noted the dementia but were not convinced of the diagnosis.  Further follow-up was suggested.  It was then that they told me about Dr. Doody (sp) at Baylor College of Medicine (in Houston) and the work she was doing.  They gave me that contact number and suggested further investigation.

Within a few months from that conference, we were able to get an appointment with Dr. Doody. Just getting to the Baylor College of Medicine was in itself a challenge so by the time we got to the right office, Dennis was frustrated with the whole thing.  At that point, I think he felt like I was dragging him around and putting him through the "hoops" for nonsense.  He didn't in any way 'buy into' the diagnosis of Alzheimer's. 

During this appointment, preliminary (and at this point familiar) testing was performed and tests were ordered.  Dennis tolerated my insistence on further testing.  It wasn't until the neuropsych testing that everything "blew off the chart".  That testing is what he had previously experienced at UTMB in Galveston.  Within a few minutes of being in the examining room, the door flew open and out he came.  He walked right past me saying,  "This is bull shit!  I am tired of people trying to make me feel stupid.  I am out of here!  I am done.  Never again"  Out in hall waiting anxiously for the elevator, his angry tirade continued.  I promised him then and there that I would not ask him to do any of this again.

The good thing that came out of that exam was that I was introduced to a psychologist (specialized in Alzheimer's disease and caregiving), this was an introduction that would prove invaluable to me in the months and years to come.  She explained to me privately that she could meet with me one-on-one as Denny's caregiver.  It didn't take long for me to take advantage of her services.  With her I found a listener who understood the complex dynamics of being wife, mother, caregiver and individual while living life with a loved one with the diagnosis.  It seemed there was nothing she did not understand.  Her reassuring presence in my life was calming.  Everything I felt was okay.  I would write letters and journal (never with the intention of sharing with anyone but her).  When I would read my personal concerns, observations and reflections she would at times cry with me.  It was as if I had a kindred spirit...an angel of mercy you might say.  I remember walking into her office on one visit and handing her three prescriptions for medicine FOR ME!  I had been at our medical doctor a few days earlier.  When that doctor asked how I was doing, I started to cry as I shared the challenges and sorrow that comes with watching what was happening.  His answer was the only thing he knew to do -- drugs.  I was upset and said, "What do I do?  When I go to my doctor for any ailment now, he is thinking it is all mental and wants to give me drugs."  She looked at the prescriptions and agreed with me wholeheartedly that I did not need that level of medication.  I was relieved to know she agreed.  Our sessions became my refuge.  And later, in one very critical meeting with the psychologist, she said, "If you are not careful, your kids are going to lose two parents."  I was sharing with her that I had "lost myself in the disease".  I didn't know who I was anymore.  Together we decided it would be good for me to return to work if that opportunity was available.  My concern was that if I was not with Dennis to care for him .... he might decline more rapidly.  She assured me the progression would be the same whether I worked or not.

During the final years of Denny's life, he joined a friend (diagnosed also) to attend the Gathering Place.  The Gathering Place was a program with Interfaith Care Partners in Houston.  Various churches would host respite time once a month to give caregivers a break and those with Alzheimer's a community of equals and engagement with other caring providers who scheduled activities, exercise, prayer, lunch and general support.  Never did I think he would continue with this program but he did.  I had returned back to work so the wife of the other gentleman took the "boys" to the Gatherings.  Soon the number of meetings increased to where there was about one a week at a variety of churches in the area.  Dennis loved his meetings.  He sensed the care, support and love of others.  Engagement with others made him happy.  Previously a quiet and unassuming man, he became more outgoing and talkative with complete strangers.  It was a great connection that made him smile.  He sensed love and God's gentle kindness through the hands of others.

Support -- the right support for both the person with dementia and the caregiver are critical.