The past three weeks I have been off adventuring the world. It was an interesting time away and I learnt a lot about loneliness and alone-ness, but I will write more on that later.
This is about Me, Martha and our journey with Alzheimers
I am fortunate to have an amazing group of friends in Christchurch. Dedicated to me and Mum and our wellbeing. While I was away they visited her at the Hoon Hay Dementia unit. I spoke with her occasionally and reassured her that I would be back in no time at all.
On my return the first thing I did was go and pick her up. I was shocked. Her appearance had really deteriorated and so had her mental state. I was not prepared for this. Her facial hair had grown out and her skin was extremely dry from the air conditioning, she was frail looking and a little unsteady on her feet. I took her too her room and we packed her things up, I washed her face and put moisturizer on it to try repair the damage that had slowly been happening. Our first stop was to get her upper lip and eye brows down. She looked a lot better but then I noticed the muttering. I guess after the initial excitement that we were together again her reality took over once more.
She was talking to someone, a very vivid hallucination. From everything I have read I know not to argue with her, I pat her arm and tell her it’s ok. That night we get to sleep early. I have my fingers crossed that a good nights rest will set her ok and maybe her hallucinations won’t be as bad. Thursday rolls around and it isn’t good. Her world and mine are the same to her. She talks to me as if I am here but she isn’t talking to the physical me, it occurs to me that she does not know the difference any longer and I wonder if this is how she coped while I was gone. By communicating with me, by interacting in her reality with me, when I was thousands of km’s away.
Throughout the day her hallucinations become more vivid, I don’t quite know what to do or how to explain it to others. I feel nervous and embarrassed but I know it’s fine. I know people don’t mind but it is still a challenge. I feel stunned as well, how could this happen. It was just three weeks and the injustice of Alzheimer’s starts to feel heavy again. I’m constantly telling her to just be quiet, not in an attempt to stop the hallucinations but she is becoming louder and louder. More vivid and interactive and more disturbed by her hallucinations.
We head out for dinner and I talk to her in the car, I tell her it’s ok, but she is worried about a friend, we get out and she starts walking the other way. “Mum, it’s this way” she continues to walk and I catch up with her to guide her back, she insists she is going to see our friend and becomes defiant and frustrated with me. I physically have to turn her around and march her back, she pulls against me and I feel nervous for us. Other people see our interactions and they don’t know what is going on, only that I am pulling at the arm of this woman. “Please Mum, come on, it’s cold” she wants to leave, I push down the urge to argue with her and tell her to stop being so stupid. She can’t control what is happening. I close my eyes and remind myself, it is the disease. This is not Mum.
My reality changes in an instant. I feel my world start to crumble, a thought comes back to me once again, ‘I thought we had more time.’ I want to scream at the world, I want to throw a tantrum at how unfair this is, how unfair it is to me, but how cruel it is to Martha, to all Alzheimers sufferers. We make it inside, every part of me wants to run and hide, I want to escape this reality. We sit and chat and I’m not fully there, my brain is burning, what should I do? Is this it? How will I cope? Focus – Focus – Focus. One day at a time.
I’m exhausted by the time we get home, and it is a challenge to say sane, to hold back the tears that are stinging my eyes. I get mum’s clothes, I turn the shower on, I make sure she gets in the shower, I get us ready for bed. I’m tired and agitated by this new reality. We go to bed and the talking does not stop, I reassure her that it is going to be ok. I reassure myself. It is ok.
You are ok.
If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!
The alarm goes off at 7:30am.
“Mum it’s time to get up.”
She leans up, surprised.
“Did you know about those people that were being mean to me, that was Peter and Clare they rung me. They are very upset and telling those peoples the truth. Those people were saying I’m a bad person, but Peter and Clare are telling them I’m not. Did you know about that?”
“Yes mum, now it’s time to get up”
“That was Peter and Clare that just rung, they are very upset and telling those people I’m a good person”
“I know Mum, it’s ok, now it’s time to get up”
“Peter and Clare called me, they are very upset. There are some bad people saying mean things about me.”
“I know Mum; it’s ok. Now get up”
“I just spoke with Peter and Clare…”
“I know Mum, now please get up, we are going to be late”
“Will you talk with Peter and Clare and make sure they are ok?”
“Of course Mum, now it’s time to get up. Come on”
It’s 830am. I hold her hand and tell her I love her; I get her clothes and lay them out. I pull back the blankets and help her sit up. We both hate this monster in her head. But we have each other and a lot of good people in our lives, and that is all that matters.
Love Kyrin x
If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!
By the end of October 2013 I felt utterly defeated, I was four months into being the sole career for Mum. I had lost a parent. I had packed/cleaned/moved/sold a house. I had relocated Mum to Christchurch. I was working a full time job I no longer enjoyed. I was making poor eating choice, not exercising and not sleeping. I was exhausted.
I decided it was time to start investing in myself, my mental and physical wellbeing were in jeopardy and if I didn’t do something soon I would end up six feet under for some reason or another. So I invested. Time and money were two things I could afford and so I set aside both of those things to dedicate to me. I dug out health and wellbeing books I had bought and never read; and I Google searched “personal trainers Christchurch.” Round12 popped up, emails were sent back and forth and I was all booked in!
Anxious and excited I stepped into Round12, it was humming and a general sense of excitement sat in the air along with the stench of hard work. I stood awkwardly staring at my phone not knowing what to do, where to go or who to speak with; a woman waved at me, strode over and with a big smile said “you must be Kyrin, I’m Tania – come with me.” The beautiful, wonderful, enthusiastic Tania took me down the back and we got straight into it. No assessments, no weigh-ins, no judgment. For the first time ever at a gym I felt comfortable to be unhealthy. Tania offered no-judgment of my size and for that I was overwhelmed with gratitude.
From this one session I had found a happy place. I pre-paid ten sessions (which FYI are extremely well priced) and so it began, an addiction to exercise I had never felt before. On my second session I was put to a test of 50 punches, two press-ups, two burpees’, two squat jumps. Going up to twenty. It seemed like an impossible task, and in this session it was. It took the full 45 minutes. I struggled physically and mentally to complete the task. I wanted to cry. After that session I couldn’t walk for days, it wasn’t a mental satisfaction to complete it. It was a highlight of how unfit I truly was. I was disappointed in myself. But as I continued to see Tania, and as she continued to make me do the dreaded burpee I began to gain confidence that I was getting better. Two months after this initial test, I completed it in 13minutes 17 seconds. A feat I never thought possible. A physical highlight but more importantly for me a sense of satisfaction and mental determination I had not experienced in a while.
After a quick trip off to the states I arrived back to Christchurch and was straight back at the gym, training hard, pushing myself into learning a new way of life. I craved exercise like I had previously craved cake. It was now a full on addiction and I was really starting to see the results. In my short time on this earth I have spent countless dollars on gym memberships and personal trainers, all to no avail.
Round12 offers family in its entirety; support, love, encouragement, honesty and so much more. Not only is it a world class gym, it is a caring and loving place.
Round12 offered me a chance to heal my emotional wounds as I addressed my physical inabilities. It is a place where judgment is not a word that exists, where can’t is banished from vocabulary and where you are pushed beyond your limits with an encouraging “you can do this, look at what you have already done!”
A massive thank you Round12 and an even bigger thank you to Tania for being an amazing personal trainer, a role model and an inspiration.
15.02.49 – 26.06.13
“Kia ora, my name is Kyrin, I care full time for my Mum, Martha, she was diagnosed with early onset alzheimer’s 6 years ago, my Father cared for her but he passed away almost a year ago.” I have repeated this many times in the past few months, to social workers, support workers, nurses, doctors, carers, old friends and new. To be honest, it is not a sentence I thought I would ever say.
As I sit in a room of carers, I listen to one mans story; he says in a tired soft voice “I’m so lonely, we used to talk all the time and now I have no one to talk too, she won’t talk to me anymore, we’ve been married 47 years, I miss my wife.” This lonely mans wife was diagnosed 18 months ago, she is still in the early stages of her dementia. My heart aches for him and what the future holds.
Early into mum’s alzheimer’s diagnosis I had resolved that I would not take on responsibility of carer. At the time of this resolution I had only known her 25 years, my Father had known her 40. I was her child, my Father was her friend, lover, soul mate and husband. Her memory would lose me, long before it lost him. However all that changed on the 26th June 2013 at 6:30am. From that moment on, I was a full time carer.
As I listen to other carers who talk candidly of their battles with this disease I realize as an adult child I have been able to reshape my relationship with Mum. I never had to fall in love with her, our love has always been familiar to me, she has cared for me all my life and as a daughter I feel it is my duty to show the same respect to her. I have been given the tools to be flexible. Our relationship is different now, I am a parent to her, I make silly faces with her, I prepare her meals and wash her clothes. I climb into her bed when she is frightened, I reassure her that everything is ok and that no one is coming to take her away. The other carers who are friends, lovers, soul mates, husbands and wives are not as fortunate as I am, me and Martha are able to enjoy our new relationship, I am not burdened in the same way as a partner, I am not burdened by watching the person I fell in love with 40 years ago disappear before me, I am not burdened by having to care for someone I have fallen out of love with. I am not burdened by her disease.
Lots of love,
If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic