A Journey Into the Abyss of Dementia
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Out of the blue like a bolt of lightning it strikes fear in every fiber of your being.
For me it came during a visit to my mom’s house while we were watching TV. She looked at me and called me Bud (her deceased brother’s name) and talked about the fun we had swimming with the family at the beach. My heart sank. Is this the beginning of what my friends told me about, or was it just an aberration?
My brother Bruce and I were a team. After my dad died we thought we had reached a period of normalcy. We were a family again and now there was something taking place that would challenge both my brother and me beyond anything we had experienced before.
Gradually reality, that cruel aspect of life that gets in the way of your dreams, led us to take Mom to Johns Hopkins Hospital and see the renowned specialist in this area, Dr. Paul Dash. His diagnosis was MCI (Mild Cognitive Impairment) of which 10% will go on into full blown Alzheimer’s and 90% may stay stable or gradually get worse.
As time progressed the signs grew more evident and we adapted the best way we could. Mom confessed she got lost a couple of times while driving so fear led her to relinquish her keys. She knew she was losing her freedom and life would never be the same for our family.
Medication can play a key role in this battle and my mom’s physician, Dr. Nick Mellis, worked miracles in tweaking her medicines, each time giving her a new lease on life. The medication fought off the demons standing at the door.
My brother and I anguished over the issues facing us. My friends told me that if you take dementia sufferers out of their home the deterioration is rapid. Realizing what that meant to our mother, we brought in a nurse, Caroline Ngandu, when things seemed darkest and reality was beyond our reach. Caroline was the angel from heaven. She bonded with my mom and became part of the family. Mom counted each day waiting for Caroline to come. “Caroline coming today, Buzz?” she would ask. Caroline would take her to the hairdressers and on the way back they would stop for a hamburger. To my mom that was everything.
There were times when we thought the day had come to make that horrible decision; dark days and nights of not knowing what could happen next. Weight loss, panic, anxiety, medicines scattered about the house and each time we fought back with different medication and more supervision.
I told my brother we would know when the day came. Through all the darkness the plea was the same – “Please don’t take me out of my home, please!” How could I do that? How do you take away the one thing that keeps them alive, the one thing they know? The decision on that issue came by way of a phone call.
“Buzz, I fell down but don’t worry I’ll be OK after I rest for awhile.”
After talking to her I drove over to see her and I knew in my heart the day I dreaded the most was a twenty minute drive to her house. It was a Sunday and raining heavy like tears falling from the sky.
When I got there I found her at the kitchen table. She was bewildered and scared. Her favorite channel, TV Land, was changed. I thought about the remote and portable phone by her favorite chair. Did she try and dial the channel changer? I wondered?
Sometimes these events are a cry for company to fight the loneliness and I was hoping this was one of those times. It wasn’t, it was real. She fractured her hip. I tried to move her back to her favorite chair and she screamed in pain and I knew it was real. I called my brother and he came right over. We called 911 and they quickly responded. My heart told me that dreaded time had come.
When paramedics Tasha Williams and Cherish Ross carefully placed her on the gurney and covered her against the elements and started to wheel her out, my heart broke because I knew the home she spent most of her life in, the one she loved beyond anything, she would never ever see again—never.
Arbutus Town Crier
11:21 pm on Friday, August 10, 2012
Its always hard to find the words, no words can really express a heavy heart. You know when another that walked that path, silence and a nod of the head from one who traveled that road.
Buzz Beeler
12:24 am on Saturday, August 11, 2012
Arbutus Town Crier, thank you so much for your kind words of support. I wrote this story because through the help of a close friend who had been through this and tougher times, their helped guide me through the changes I and my brother would ultimately experience. I hope this story will help others in knowing they are not alone in this battle and you can find the strength to cope.
I am finding out quickly the world I new as a child and young adult is not the same and reality can be very cruel and you must be prepared. I hope to do one more with the aspect touching on how and what to do as this terrible disease takes a grip on our loved ones and those who care for them
The dedication and compassion of those professionals who care for our loved ones are the real heroes and I have learned a humbleness through this entire experience.
kevin
1:50 am on Saturday, August 11, 2012
Nothing can EVER prepare you for that day when you change your daughters diaper in the morning and your moms that night. I don't wish that pain or memory on anyone. Still give them love and pray it doesn't ever happen to another person.It will but I still pray for the cure.It occurred to me when I experienced it that I can't imagine anyone that I would ever think deserves this disease to touch their family.
Buzz Beeler
7:25 am on Saturday, August 11, 2012
Kevin, I was deeply moved by your beautiful words in dealing with such a tragic event many of us will share. Thank you so much.
I have learned one important thing, to except your loved one for for what life has bestowed upon them and you must control your emotions, because no matter how hard your try to reach them they cannot feel the feelings you may have.
There were times when I lost my patience and fought like hell to reign them in knowing deep inside that know matter how hard I tried I could not reign in my own demons of frustration.
I think it's a slow gradual process that you begin to learn to except them for themselves and are thankful for each second they comprehend the reality that eludes both them and you.
I also hope that if anyone out there who may read this has a question please don't hesitate to ask. You will see that you have many friends like Kevin and Arbutus Town Crier. Sharing the burden makes the load bearable.
Janice
4:54 am on Sunday, August 12, 2012
Your story really captures the process of recognizing and accepting a loved one with dementia. I remember going to the nursing home and looking at the pictures of the residents. They all told a story of people who had lead productive lives in the not so distant past.
It is a slow process and I think we sometimes don't want to see it, but you are right that the longer you can keep the person in a familiar environment the better it is for them.
Buzz Beeler
9:14 am on Sunday, August 12, 2012
Janice, thank you so much for your comment. When we first had my Mom at GBMC they had to have someone with her 24/7 because of the tremendous fear, panic and anxiety she had. She kept thrashing about trying to get out of bed and go home with a fractured hip.
She has been at ManorCare for three months and her memories of her home have faded. She wants to go back to the home she had with my deceased father when they first married. She has a roommate which helps in dealing with their terrible sense of loneliness. Although my brother and I visit daily she forgets. She is congenial and friendly and the ManorCare staff love her. That is a big help.
The two things that I stress to people is that they make sure the facility is qualified to provide the level of care required and they will except Medicaid after their funds are exhausted. I would also suggest as tough as it may be to make prior funeral arrangements.
Be patient with them and understand and except they are where they need to be. My mom has lost so much weight (they don't eat despite your best efforts) that she requires constant care.
Make ever moment you have with them count, time is very precious.
Janice
2:39 am on Monday, August 13, 2012
It sounds like you are doing all of the right things. The most important is just being there, no matter how hard it is. I remember I watched a documentary one time where a woman said she grieved the relationship she lost, but she relished the new friend she made.
I put a picture of my mother and father when they were first married in her room. She liked the attention the staff paid to it plus I think it was something familiar to her. She had been widowed when she was very young and her love for him remained strong.
I used to take her to some of the social events there. You are right about the staff, but the thing to remember is that nothing will ever be perfect and sometimes people expect a little too much. It is extremely important to be kind to the staff and anything you can do for your mom and her roommate when you are there helps the staff.
Don't forget to take care of yourself and I hope all of you find peace.
Buzz Beeler
8:46 am on Monday, August 13, 2012
Janice, almost sounds like you are standing right next to me. I have experienced everything you have written.
The one thing that worries me the most is that she is sleeping more and more. I have been told by friends that may be a sign they are giving up. She says to me when I'm there, " Buizz close your eyes and we'll both get some rest OK together." When she does fall asleep I hear her call out my name in her sleep and I always say I'm right here and rub her arm.
DAVID PATRO SR
12:49 pm on Monday, August 13, 2012
Hi Buzz My prayers will go out to you and your brother. It was a time when we could just get a smile from my Dad. it hurts . but you can feel and see the love . Just being there for her Says it all a good son.
Buzz Beeler
1:23 pm on Monday, August 13, 2012
David, thank your for your support. I wrote this in hopes that when the times comes people will no that others have walked before them and you are not alone in the struggle. It is sadly, part of life's cycle.
I hear you are doing good things for your community and have accomplished a great deal. Keep up the good work and thanks for your thoughts and prayers.