Living with Mom–The Fall

From January 30th at 1:39 AM
Today while I was at work Mom took a spill. She was not home alone. She tripped over her own slippers. She broke her left Femur and her left wrist. She is also complaining of neck pain but we need to wait until morning for a full MRI. They also need to wait for the orthopedic surgeon in the morning before they proceed with setting her leg or arm. She may need surgery again. Sorry for the super late update everyone, it has been a horrendous night to say the least. Rest assured she is not alone.

Today is February 15th
It has been a long couple of weeks
I got the call while on my way home from work. As anyone who has cared for an older person knows, this can be one of the worse phone calls you ever get.
She was in the hospital for 2 weeks. It took 3 days before she could have surgery and get the leg and arm set.After surgery she spent 3 days in Surgical Trauma, where things really looked bleak for a bit, she kept on saying she was going to die. I was scared to death and worried sick, that she WAS going to pass. On the fourth day they moved her to a step-down unit, where she spent most of the time for the next 5 days sleeping and lethargic. She finally started to come around last weekend, talking and joking, and just seemed to be almost back at her baseline. Two days ago they finally released Mom from the hospital, she was moved to a skilled nursing facility for Rahab once again. She is smiling and laughing at my stupid jokes, and silly face dances.

They removed the pins from the previous Hip surgery,she now has a steel rod in her leg, and a cast on her wrist. With the progression of the dementia, it is going to be much harder for her to follow simple instructions. Therefore making rehabilitation a much longer process. We are hopeful and positive though. On the brighter side of things, she is already making friends there. She seems to be much more comfortable than she had been at the previous facility, which BTW refused to have her because we would not put into long-term care and chose to care for her at home. This new facility is clean, the staff is very friendly and it is much more home like. My apologies for the long break in posts, but it has been a long couple weeks.

Into the Darkness

Endless scenarios they swirl, the pieces do not fit
Clouded by obscurities, they flutter through the mist
Lost without a cause or clue, restrained by ghosts of past
Imprisoned by the fears, they were by others set to last
Wandering alone it seems, time has slowed and slipped
Comfort and conclusion from the mind they have been ripped

Eyes so lost a light so dim, echoed screams of fright
The sands of time for you it seems,have turned day into night
Broken and bewildered at the hands of evil minds
The vengeance and the retributions so shall come with time
No way to ease the torment, no calm to the storm
Nowhere to hide and shelter from the cold, no place to warm

Into the darkness and unknown wandering, disturbed
Unsure and indecisive, cannot hear what you have heard
Eyes so dark and distant, reaching out for a hand
In a world so far from lucidity, unable to understand

The Empty Chair

5AM I sit and stare in the corner at Mom’s empty chair
Although right now she only sleeps, the thought it still cuts me deep
In the corner alone and dark, the storm that brews still leaves its mark
The journey long and filled with fear and I for one am glad you’re here
I know in my heart and in my head, as you lie sleeping in your bed
One day you will no longer be, and the empty chair is all I’ll see

It scares me fills me with such fear, the thought of you not being here
We were not so close when I was young, now so far and close we have come
In your head dark scared and lost, to bring you back I’d pay any cost
I awake today and I watch you sleep, and listen to you as you breath
For granted these things we often take, when they end our hearts all break
It rips my heart as these words flow, things I never thought I’d know

My life so changed, so rearranged
You so scared, with empty stare
My biggest fear your empty chair

As you awake I feel your pain, my tears they fall like salted rain
So alone you feel though you are not, unaware of all the things you have got
Thoughts so scattered no connection, random sorted recollection
The little things I have learned to embrace, the simple smile on your face
So often you call out in the night, in the darkness looking for the light
I try to comfort, and assure as I stand outside this shuttered door

These words I speak my heart I share
As I sit and fear the empty chair

Living with Mom

Today is Wednesday January 24th

Today is Mom’s 73rd Birthday.

Here is Mom at her 60th B-day party. I sure do miss that smile.

Brevity, Lucidity and Death!

It’s morning, my favorite part of the day. Not because Mom is not awake yet, but because this is the time of the day she is most lucid and able to hold short conversations. It’s the time of day when she is able to communicate to me, how she feels, what she needs, and the things she wants the most. As the day progresses, she gets more distant and is only able to answer the most basic questions and her thoughts become more scattered it seems. Sadly, lately all she says is, she wants to die. She just don’t want to be like this, she is scared and feels alone even with the people around her. She has asked on several days in the last 2 weeks if I could help her die. All I can do is tell her I love her and we are not ready for her to go yet, as my eyes well with tears. I am so heartbroken when I look into her eyes and I can feel her loneliness, and isolation.

Mom and I were not always close, but she did always have my back when I needed it the most. I feel it is my place to have hers as she progresses through this nightmare. I try to reassure her as often as possible, but it doesn’t always help. She doesn’t trust anyone much any longer, she thinks everyone is trying to hurt her or take her money. Last night while helping her to the bathroom, she suddenly had this look of terror in her eyes. She was terrified, and said she thought I was trying to kill her. I think I may have died a little inside right at that moment.I gave mom the tightest hug I could without hurting her to assure her I loved her and would never hurt her. I find myself having to reassure her everyday that she is loved and wanted.

Today was especially tough as we navigated the day. She was convinced no-one loved her, because everyone wasn’t waiting here when she awoke. “It’s my Birthday everyone should be here to see me.” Trying to explain to her why her entire family wasn’t here at the crack of dawn was not an easy task. There was no comforting her for a good portion of the day. We went to Marie’s for dinner and cake, and she seemed to be a little more happy than she had been. Oddly we were able to get her laughing and smiling by singing “if you’re happy and you know it”. We had 2 cakes, a plain yellow for us and a Strawberry shortcake all for mom as it is her favorite. She ate most of the cake, and was definitely in a good place at this point. I wish she knew how much it really means to us all that she is still here, and that the reason I keep her at home is because we love her and care so much.

I don’t sleep much anymore, as I need to be on the alert for her calling in the night. Even with the bed rails there are nights when she tries to climb over them to get out of bed. Most times its just because she needs to go to the bathroom, but there are times when she is in a half sleep state and can become quite the handful. It’s a strange state of mind, as most times she seems to be stuck in an event from her past. It never seems to be a happy event, and bringing her back is a challenge. It is so hard as this is not Mom. She was always a sweet, caring and relatively reserved woman. Her personality is now the complete polar opposite, and when she is in this half sleep state,it is magnified significantly and her strength is truly unbelievable. I find that just wrapping my arms around her and trying to hold her and tell her it is going to be alright works most times. Then there are the times when it just doesn’t and she yells and becomes violent.

I share our story in hopes, that maybe it will help someone else in this same situation. I hope that others will follow and learn some of the methods we develop to deal with the various situations, and challenges we encounter and maybe share some of their experiences with us.Everyday is an adventure, and a challenge and makes me a better person. Tonight I am happy, she made it to another birthday and through the Holidays with enough of her self to understand what is going on around her. This disease seems to be progressing faster than I expected and I fear that by next Christmas she will be too far along for her to even understand. It scares the hell out of me, wondering what it must be like for her in her head like that. I pray every nigh that there will be something to reverse some of the effects before she is too far along for that, but it certainly does not look promising. I pray every night for God to give me the strength and patience to care for Mom, and thank him every morning that she wakes for giving me another day with her.

I want to thank everyone for following, and sharing our story.

Living with Mom–An Alzheimer’s story

This is the first installment in the ongoing story of caring at home for my mother, who was diagnosed with Alzheimer’s one year ago.
There will an a companion video series coming along as well documenting our struggles and successes.

Today is Wednesday January 10th, 2018.

Janet Chilson–Mom
73 years old

This mom–Janet

Robert Bleattler–Me, the oldest son and primary caregiver
53 years old

Dawn Wellman–daughter 49 Years old
Deral Bleattler–son 47 years old

Marie and Bill Thompson–Friends and caregivers ( they are really Family to us)

A brief history:

In February of 2017 Mom was diagnosed with Alzheimer’s, though we knew before then that it was beginning. At the time she was diagnosed, she was told she could no longer drive an automobile, which was good as she was getting lost frequently. Losing her ability to drive, and therefore in her mind…independence, really took a toll. Although we got her out as often as possible, it was devastating to her and very difficult for the family to watch. She became increasingly depressed and agitated, and seemed to almost give up for a period of time. Just writing about it now,makes my eyes well with tears remembering how the light had disappeared from her smile, and the way she didn’t seem to enjoy the things that once made her so happy. It took some time, but we were able to bring her out of that episode of despair. Although, she has not been the same since then.

At the time of Diagnosis, Mom was living with her best Friend Marie Thompson and Husband Bill, she had been living there for 7 years. My step father had passed away some years ago and Mom didn’t want to live alone, or have to live with any of her children and lose any of her independence. Marie was fantastic with Mom during those first few months, though Mom was becoming a handful. In August, Mom tripped and fell. She broke her right arm, I was away for work. A week later she took a road trip with her Brother Rich and his wife Deb, to meet with all of the living siblings at her youngest brothers home in North Carolina for a family get together.Everything seemed to be going well, though the trauma of the break seemed to trigger some other symptoms. She was afraid to walk, as she thought she would fall again. On September 1st, Marie awoke to find Mom had descended the steps from her room during the night and made her way downstairs unassisted, she was sitting in the dark alone and completely disoriented. Can you imagine the absolute fear Marie must have felt when she discovered Mom was not in her room?

We contacted her primary care doctor who told us to take her immediately to an ER. We never did get a definite answer as to what triggered this, but she spent 11 days in the hospital. She suffered episodes of unexplained seizures and was in a coma for almost 4 days. I have been through a lot in my life, but those first 6-7 days in that hospital were the hardest thing I have ever been through. I lived at that hospital. After 11 days Mom was due to be released to a rehab facility for 30 days, as she was near unable to walk. On the day of her release, she was dropped by someone in that hospital, and suffered a broken hip. She has not yet recovered from that trauma, and I am sure she never will. Her hip has healed well, as well as her arm. Since the release from the hospital, mom has not been the same. The disease seems to have progressed faster since then. Although she is physically healthy, her mental facilities are not faring as well. When she was released from the rehab facility, she came home to live with me. Marie and Bill were just unable to care for mom at the level she now required as they are both around Mom’s age.

This brings us to the present, the here and now, the today.
New Alzheimer’s study

This is by far, the hardest job I have ever had. And it IS a job, 24 hours a day 7 days a week she requires care. It is also by far, the most rewarding job I have ever had. I have learned a lot about myself, and become closer to my mother than I had been my whole adult life. She is by all rights what my life now revolves around, every decision I make I must stop and think how will it affect Mom? My whole life changed when she came home to live with me, and this is our story!

Please follow us, as we together learn how to best navigate this murky unknown atrocity.