Until there's a cure ... there's care

Geoff and Karen

By Geoff Finnigan

Not only is this disease so horrible to endure for the sufferer of MND. But the other side of the coin is the partner and family trying to cope with the emotional issues that are created.

I myself have trouble coping at times. Emotional feelings ebb and flow, relationships can be irreparably damaged at times. From talking to other people who have lost their partners through traumatic illnesses, a common feeling is that we must control our emotions, and quite often we cannot. We have lost our partner, we seek affection, we want clarity in our new life’s journey.

We want understanding, compassion BUT NOT SYMPATHY. Don't take our grief away from us.

This is our journey this is our grief, no one else’s. We don't want platitudes, advice. And we don't want anyone to interfere with our grief, or assume they understand, they cannot. It is a journey that we have to travel alone, not even family members can help.

Sure counselling helps, but it is the nights that are the worst, silence, loneliness, sleeping by yourself after so many years as a couple. Those are the worst times, your mind works overtime trying to make sense of it all.

But life has to go on, sure it does, but at times it is so f ..... g hard.

I have at times worried I am doing Karen a disservice, am I writing for my own personal emotional release or am I paying homage to Karen. I still don't know for sure, but I do feel that these words are keeping Karen’s spirit alive.

I wake just before dawn when I get that urge to write. The last time this happened I had a vision ... this vision is of me standing in front of an audience. Beside me to my left is Karen, she is standing behind me and she is telling me "Go on Geoff, tell them!"

KATIES STORY:

Karen’s family nickname was Katie, that nickname meant a lot to her. Her siblings always referred to her as Katie, and she took offence to anyone outside of her family, calling her Katie.

Karen was born Karen Bethia Hulley to Ted and Jean Hulley on the 22nd January 1954 in Morwell Victoria. The eldest of three girls and sister to four boys. Being the eldest girl, Karen helped raise her sisters as well as protect them from the boys when sibling pressures came to the surface. The family stability was disrupted by continual moves by Ted and Jean to obtain work stability. In those early years Murmungie was a childhood memory, then Reservoir became a stable home environment in her early teenage years, and eventually the family moved to Markwood when Karen started nursing.

EDUCATION: Karen attended Merrilands High School in Preston, Victoria. On graduation she turned her thoughts to her life's vocation.

Karen wanted to be a Ballerina as a young girl but her dad, Ted, said she had clumsy feet so she turned her attention to being a nurse. At the age of 16 she enrolled as a nurse at the Preston and Northern Community Hospital, commonly known as PANCH. She stayed at the hospital’s boarding facility as was required by PANCH along with other first year nurses.

Whilst on duty one night she had a blood vessel burst inside her brain. A Neurosurgeon, who had sped across Melbourne from the eastern suburbs in the early hours of the morning, managed to successfully save her life.

Karen’s life was saved, but she was left to deal with Grand Mal seizures due to scar tissue within the brain from the operation, and as a consequence suffered epilepsy. After a period of convalescence and drug treatment to control the seizures, she returned to PANCH and completed her training as a Divisional 1 Nurse.

WORK: Karen found that the responsibilities of a division one nurse in a busy community hospital environment taxing and stressful. Her inability to think quickly was a legacy she had to endure for the rest of her life. She told me that she preferred to be told what to do, not to be responsible to act quickly when required, whilst in charge of a ward.

In addition she had to endure the discrimination and ignorance that ensued by suffering epilepsy.

In 1972 Karen and I met, I was to be her husband for 42 years.

At that time Karen left PANCH Hospital and. started working at various private hospitals on night duty. Her confidence as a divisional one nurse slowly returned and she eventually learned to cope with the demands of community nursing.

Karen, as a Divisional 1 Nurse, worked in various positions over her working life. Public hospitals, private hospitals, nursing homes, a blood collector for Melbourne Pathology. Whilst living in Melbourne she started her own business as a masseur. She also applied Bowen Therapy and Reiki techniques to clients.

When we moved to Wangaratta in 2004 and established our Lavender farm B&B business in Oxley, Karen started working at Wangaratta Private and eventually became in charge of the day stay unit at Wangaratta Private Hospital.

Karen loved the interaction with patients, especially the ability to talk to them. She was a well respected member of the hospital team. Living in Melbourne Karen had become a sports trainer, a masseur, a Reiki master and a Bowen therapist. She was heavily involved with the Anglican Girls Friendship Society Leadership team whilst supporting our two girls.

Favourite songs/music: Karen’s music taste was varied—she loved Elvis, Country music, Traditional Irish Music, Dolly Parton and most popular music.

Special friends: Karen had many special friends, she was the kind of person who would make friends easily.

She had one particular friend and that was Judy. Karen met Judy when both of them had children at kindergarten whilst living in Epping. It was a friendship that lasted until Judy died of cancer in 2008. Throughout Judy’s struggle, Karen would drive down to Melbourne from Wangaratta after working the day stay unit at Wang Private to support Judy. The death of Judy impacted on Karen immensely. She had lost her dearest friend, and I noticed a change in Karen, a sense of sadness and loss would pervade her thoughts.

Fran Pryor was another special friend, Fran worked with Karen in the day stay unit of Wangaratta Private Hospital. Fran became very supportive when Karen had to stop working. Fran would come around to our house every Tuesday and sit and talk to Karen whilst I went into town to do shopping and collect the mail.

I know Karen cherished those days with Fran, the knowledge that she was dying ,was not important, it was the friendship that had grown between each other that was the important factor. I am very much indebted to Fran for her kindness and support.

Hurdles and Heartaches: One hurdle that Karen had to overcome was the stigma of Epilepsy. It affected her relationship with fellow workmates as they failed to understand the impact of the brain surgery, and the possibility that Grand Mal Seizures might happen, although Karen’s epilepsy medication provided stability.

She had to deal with the stigma of being an epileptic. Although a person eventually of strong character, she wasn’t when I first met her. Her family gave her little support in those early years and her confidence was low. As she grew into married life at 20 and bearing three children she overcame her lack of confidence. I suppose having three children you develop confidence.

Our first born son Timothy, was involved in an incident at PANCH, at the age of four days. He was rushed to the Royal Children's Hospital burns unit. We would drive from Epping to the Royal Children's Hospital every morning where Karen would change his dressing and stay with him all day until I came to pick her up at night.

In April 2014 Karen was diagnosed with a form of MND called Pseudobulbar Palsy.

Regrets: Karen was a happy soul by nature, but the one regret she had was that she would not be alive to see her grandchildren grow up and marry. I don’t know if you believe that there is an afterlife. Karen did, our eldest daughter does and I do.

I would like to share with you, some words from her Reiki reading by our eldest daughter on the day of her passing.

“Darling, there you are, I’ve been waiting for you all day. I know you’ve been busy with your work. I am ok. I’m really ok. It was easy, so easy. You said it would be. You said I’d wake up and be surprised that it had happened.

“And it did. I didn’t really expect it. I didn’t know what to think. But I couldn’t really think. I was so tired, bored, exhausted. There’s not much to live for once you reach that point.

"It’s hard. I want to stay part of your lives. I want to meet Mika. I want to see my boys grow up. I want to hold them and play with them and make silly jokes and make more quilts. I know it’s time, it’s time to end this suffering, the pain, the constant discomfort, I need it to end, I could not stand it any longer. But I will miss you"

"There was nothing worse than this disease. Nothing worse ... At least (now) I don’t need to be rolled or have my mouth wiped or eyes wiped or bum cleaned. Oh, it was awful. AII of it. I am so relieved it’s over. And that I’m still here, somehow ...

"All I need to do is turn around and the way is clear ... I know which way to go. I am not sure where it will take me but the pull is strong, the direction is clear. I just need to be ready. And I’m not ready yet, not yet. Not until the funeral, not until I see you all together, can I be sure you’ll be OK.

Then I’ll go. And I will, I know where I need to go. And I know I’ll be OK, I’II be safe."

Karen had photo books made for each of the grandchildren so that they would remember her. Unfortunately she couldn't make the birth of her first granddaughter, she passed away on the 6th of June 2016 and our granddaughter, Mika Katie, was born on the 16th of August 2016. Karen’s time had come, the struggle for survival was too great.

She worried that the grandchildren would forget her and it was very important that those photo books were made. I put her mind at rest when she said to me, "will they remember me?" I reassured her that they would not forget her, and they haven’t.

Sports, successes: Karen was a high achiever. As a member of the Victorian Road Runners Club she was awarded the Silver Shoe Award for clubman of the year in 1985. Apart from running many fun runs over the years she completed the Honolulu Marathon in 2001. That same year she gave a speech to Epilepsy suffers at the Epilepsy foundation of Hawaii.

Karen had a couple of falls as her mobility decreased. She was using the wheelie walker when she had a frightening incident. I heard a crash, she had tried to walk to the toilet, her legs gave way and she put her head through a plaster wall in the bed room. No tears did she show. At this stage, it was clear that she needed to use the wheelchair in the house. Karen was still fighting, still trying to show her independence.

Karen wanted one last trip so I paid for our eldest daughter to accompany Karen on a trip on the Ghan. I couldn’t bring myself to go, our daughter had been overseas for 10 years, she needed time with her mum. Karen fell over in the street going to catch the train. She split her head open, and had to go to hospital to get stitches inserted. They managed to get the stitches inserted just in time to catch the train. She said, "don’t tell your father" - they didn’t tell me until they got home.

Personal care: As far as I was concerned it just had to be done, she was my wife, I wasn’t going to abandon her to a nursing home, that would have destroyed her. I learned to cope, we had been married 42 years and Karen being a nurse understood. It would have been less dignified if she hadn’t been.

When Karen was confined to bed, I had a monitor in her room and my room. She would make a sound during the night and I would go into her room and tend to her needs be it rolling her over, or adjusting the bed linen.

The most distressing time for me was when I heard her become distressed. I went into her room, her face was bright red. I asked—have you had a bowel movement? She indicated with tears in her eyes, yes. I had to clean her, I reassured her, I showed no emotion, but my heart was being torn apart. So distressing to have to clean your wife’s bottom, this bloody disease strips all dignity away. This disease is so terrible, it takes away managing bodily functions - such a bastard of a disease. That first time was the worst, after that I was OK.

I was worried about her PEG feeding tube - concerned that it would fall out. When it did once it was panic stations, Karen was distressed. It was 9 o’clock at night - I called the Ambulance, her catheter had come out as well! The ambulance didn’t have a ventilator. They told me that they hadn’t done this before. Luckily I had purchased a battery powered converter unit for her ventilator. We used that to get her to hospital and home again.

NURSING CARE: Karen loved the interaction with the nurses, and I loved it too. Initially I was jealous for a while when Karen’s care became critical. The nurses would say to me, "go and have a rest we will look after Karen”, I sort of resented it a little bit at first, then I realised that I was being selfish.

There was JOY in Karen’s eyes when the staff came, even when unable to move her limbs, her eyes and facial expressions were classic to watch as the nurses joked and teased her. They gave her dignity, I am so grateful to them for that.

The palliative care team educated me around moving Karen to prevent pressure sores developing and keeping her skin moist. I’d rub oil into her sore muscles. Later Karen was struggling with muscle aches and pains. There was no muscle left to massage so I resisted Karen’s request to call the masseur.

I cannot emphasise enough, my sincere appreciation to all staff who looked after Karen. You were our lifeline. I will never forget your dedication and kindness. You restored her dignity that this bloody disease took away.

SUPPORT GROUP: Talking is very therapeutic for me. I was part of a support group. It was for current carers and recently bereaved carers. There was a commonality between emotions - I sometimes would hold court so to speak and ramble on a bit. The others in the group understood ... it felt like we were in a parallel universe, people were going about their business as usual, but I/we were not. So many emotions, so many feelings.

I was feeling frustrated and helpless. With the knowledge of the disease, its prognosis - it seemed like I had nowhere to go. There was no one I could turn to and find help. No way to find help to try to come to terms with the diagnosis.

Eventually we found out about MND Victoria and especially Sue Sweeney. Then the Palliative care team at Wangaratta Base Hospital, Denise Ritchens and all the nurses became very important as did Jackie Creek who took over from Sue Sweeney. There were so many nurses and support personnel involved with Karen’s critical care.

Karen stayed at home and I cared for her for two years. It was not fair, I had so many questions, about MND, about the meaning of life. Why Karen? She never had a bad word to say about anyone, always happy.

I was challenged by Karen’s faith in her god, and her spiritual beliefs. I could never challenge her beliefs, nor would I. How could this god be so cruel? Why my dear Karen had to suffer so much.

Karen donated her brain to the Florey Institute for research into causes of MND. She had that written into her will! As always, Karen thought of helping others. On the day Ben from Mason funerals took Karen down to the Institute, I got a phone call from him—that night. He said ... "Karen is back home"! That small gesture meant a lot to me, and still does.

Karen’s death has taken a toll on our family. Relationships are still fractured. Group gatherings are tricky unless the grandkids are there. They are the distraction, they help make light of the gathering. We tend to gloss over reminders of Karen when we are together, sweep them under the carpet so to speak, the feelings are still very raw, we have not sat down and talked over our loss as a family, we are all coping in different ways and sometimes it is better not to say anything.

It was 4 or 5 months after Karen died, I had visited Catherine at her home and we joked and talked about many things. Henry, Catherine’s little boy came into the lounge room with Karen’s iPad. Karen had given it to Henry when she could no longer use it.

Catherine sensed that me seeing the last tangible thing of Karen’s brought back sad memories and she quickly ushered him out of the room with the iPad. Little insignificant things such as an iPad affect me.

Christmas 2016 was very hard, we all had planned to be at Catherine’s place for lunch, but a week before Christmas, Catherine rang to say that she couldn’t deal with Christmas. The week prior we got together for Henry’s birthday. The day was filled with sadness, thank goodness that the grandkids were there to distract our thoughts.

It’s now 16 months since Karen passed away. When Catherine calls my mobile, she hears Karen’s voice, in the past it upset her, now only fond memories flood back. It is a positive thing. She has reframed it - hearing mum’s voice now is a pleasant reminder.

With my son Tim, he misses his mum. When his boys are at school, he has time to think. When we are all together he does not show his emotions. They were always very close.

TRIGGERS: There are so many triggers that bring back memories. I drove down to Melbourne just the other week. And driving on the Hume Highway, that we had travelled oh so many times in the past. Stopping off at the Euroa service centre, for coffee and an egg and bacon roll. Or just reflecting on our life together as the countryside passed by.

My son in law Troy, said to me when I went to their place for lunch, that he had put an Elvis Presley record on for Karen on Mother’s Day. Little Henry remembered Grandma and the many antics she would get up to with him.

Most of these triggers are sad for Karen’s loss of life, she deserved better. She said she was going to see me out and live to 86!

Karen passed away on June 6, 2016 so her memory is very much in my thoughts this time of the year.

I was invited to the Neale Daniher MND symposium at the Florey Institute in Melbourne which I attended. To watch Neale struggle to hold a cup of coffee with both hands made me feel sad for him. Although he is upbeat at the moment, this disease is going to test his resolve in the future. And I wish I could help him.

There are too many triggers to talk about here. Life will never be the same now that Karen is gone. How can it be, I’m 70.

Get on with life, people expect it of me, and I will, but it is so damn hard at times. I wish I could spend just one more day with Karen, and know that she is ok.

This story was originally published in MND News: January/February 2018


Read more MND stories:

/~mndasnau/June's%20MND%20Story

I am 86 years old and up until June 2018, I was a reasonably healthy person who led an active life and loved communicating/ socialising with family and friends.

/~mndasnau/MND%20Equipment%20Volunteers

Did you know that we have two equipment volunteers who help our Equipment team supporting people...

/~mndasnau/An%20Ode%20to%20MND%20-%20A%20poem%20by%20Joy%20Blakely

An Ode to MND is a poem about daily life whilst living with motor neurone disease written by Joy who had MND.

/~mndasnau/Marcus%20+%20Harry's%20MND%20Mission

My two boys Marcus (10 years old) and Harry (8 years old) unfortunately lost their nana to MND in April 2018.

/~mndasnau/Cosmologist,%20space%20traveller,%20hero!

In my time at MND Victoria so far I have had the chance to engage with individuals whose resilience in the face of adversity is inspiring.

/~mndasnau/Goodbye%20Friends

Brian was the last to go. He too died from motor neurone disease – that is the disease whereby the neurons stop working and cannot convey messages to the muscles ...

/~mndasnau/Dean%20+%20Paula's%20MND%20Story

41 year old Dean is married to his childhood sweetheart Paula and father to two teenage boys ... in July 2015 their life came to a halt when Dean was diagnosed with MND.

/~mndasnau/Pam's%20MND%20Story

When Pam’s son was diagnosed with MND three years ago, she didn’t know what to do. As a mother she felt so useless, she couldn’t do anything except love him.

/~mndasnau/"Living%20the%20Dream"

Gavin McCann was diagnosed with motor neurone disease in January 2015. Being told this news is devastating for anyone. Gavin however, used this news to live out his long time dream.

/~mndasnau/Andy's%20MND%20Journey

Andy's MND journey began after noticing difficulties with slurring speech. Medical investigations led to a local neurologist in May 2015, who suggested motor neurone disease ...

/~mndasnau/Diagnosed%20with%20MND%20-%201%20June%202016

I was a stay at home single mum with 3 children aged 5, 7 and 9 in 2003 and my youngest was recovering from cancer treatment. I had left my husband in 2002 ...

/~mndasnau/Kokoda%20Challenge%20-%20meet%20Beck%20Mason!

Rebecca Mason more than deserves the title of legend. Beck lives in Portland but makes the trip up to Geelong regularly to be with her best friend who has MND.

/~mndasnau/Funny%20story!

Went to a medical appointment recently at our local medical centre in Emerald, Vic, in my Frontier Tilt in Space wheelchair supplied by MND Vic ...

/~mndasnau/Karen%20and%20Geoff's%20MND%20Story

Not only is this disease so horrible to endure for the sufferer of MND. But the other side of the coin is the partner and family trying to cope with the emotional issues ...

/~mndasnau/Always%20remain%20hopeful,%20fight%20and%20never%20give%20up

This experience not only significantly impacted my life, but also helped me develop as a person and become who I am today and the person I will become tomorrow.

/~mndasnau/Dealing%20with%20Motor%20Neurone%20Disease

I can talk, I can walk, I can swallow, I can read, I can write, I can itch my head if I need to, I can laugh when I want to. I can wipe my own tears. You're thinking, what's the big deal?

/~mndasnau/Mixed%20Emotions

A poem written by one of our volunteers about her experience of motor neurone disease ...

/~mndasnau/Pam's%20MND%20story
"It’s the understanding, knowing that when I phone you, MND Victoria always understands ...
/~mndasnau/My%20Story%20about%20MND%20and%20how%20it%20has%20Effected%20my%20Life
I remember the first time I ever heard the words “Motor Neurone Disease”.
/~mndasnau/Liz%20and%20Rob's%20MND%20story
On March 28 this year my partner of 21 years died in my arms. She was 54 years old when diagnosed in June 2016
/~mndasnau/Walking%20Back%20Home
Last year’s Camino walk was raising money for those that can’t do it and it was in memory of my husband and his father.
/~mndasnau/Wolfgang’s%20journey%20and%20what%20to%20expect
My husband dances with me, but not as often as he used too, and he doesn’t like the fast songs.
/~mndasnau/In%202012,%20I%20was%20one%20in%20a%20Million*
Being a good brother he said nothing about the change but assumed that little brother, at age 77 had taken up the booze.
/~mndasnau/Joy's%20MND%20Story
Neither John nor I expected this ... when the future with MND was explained it felt like we’d been hit by an express train.
/~mndasnau/Cheryl's%20MND%20story
When Cheryl received the diagnosis of MND in 2002 she was 32 years old, married and had a 3-year-old son, Mark.
/~mndasnau/Living%20well%20with%20MND
I have been let’s say, "fortunate" enough to have had MND for nine years, instead of the average two ...
/~mndasnau/Brett,%20Elizabeth%20and%20Anneka’s%20MND%20story
As Brett’s disease was progressing very fast, his life expectancy was about nine months.
/~mndasnau/Barry%20and%20Carol’s%20MND%20story
Carol and I had retired from a lifetime of farming and were planning to grow old together ...