Woodend
Lifestyle Carers Group

Personal Stories

Rosemary's Story

My husband and I had an amazing married life.  He was born in Scotland and came to Australia when he was four years of age.  We married younger than most do these days, and thoroughly enjoyed building our life together.  He was a mechanical and structural engineer, and in 1985, we started our own consulting engineering and project management business.  He was well respected in his industry, and was often called interstate and overseas to solve engineering problems.

Whilst he was very busy in his business, he loved family life.  We have three children, two grand-daughters and recently, two great grand-daughters.  The highlight of my husband’s weekend was to pick up our grand-daughters on the Friday night, and we would spend the whole weekend with them.   We would take them home exhausted and happy on the Sunday night.  Often we would take them on holidays with us.

I always marvelled at how full of life my husband was.  Nothing was ever too much trouble for him, and he enjoyed being ‘the life of the party’.  He was on many committees with community groups, and was a very competent leader.  He loved studying English and Australian history, and would regularly be asked to speak to various groups on the subject.  He would arrive with his suitcase of hats and wigs etc. and would become the characters he was speaking about.  He always created much fun and enjoyment wherever he went.  We both enjoyed Scottish Country dancing and would dance a couple of times a week.  And music, how he loved singing and playing the guitar, and together we ran a music night once a month, encouraging musicians to come and keep the Celtic and early Australian music alive.  We formed a small band with our friends, and had many fun nights playing our music together, until recent years.

We had a great group of friends and we would go away in our motor homes together.  My husband was so much fun to be with.

He was so loving and protective of me, whilst encouraging me to follow my dreams.  I worked for a medical practice, as well as working in our family business.

In 2006, I noticed him losing confidence in some areas of his life.  Most people wouldn’t have noticed, but because he was such a dynamic person, I noticed it.  Then gradually, he began repeating the things he had told me just a short time before, as well as forgetting things I had told him, but becoming adamant that I had not told him.  I also began to notice what I thought was a slight depression.

For this reason, my husband went to his GP, and was told he was just ‘overworked’.  As time went on, I was stepping in to help with getting him through his day, as his organisational skills were disappearing.  We persisted with a few more GP visits, and finally I started attending these consultations with him, because he couldn’t really remember what the doctor had told him.  Over and over again, the story was the same – “just stress”.

By 2010, I was tired of getting the same response, without help.  My husband needed my guidance more and more, and because of the diagnosis of stress, I was trying to protect and hide his deficits from friends and business colleagues, thinking that I could protect him until he got ‘back on his feet’.  We asked for a referral to a neurologist to have the tests for dementia.  These were done, but my husband passed the cognitive assessment, so again, the diagnosis of stress was given.  You see, he had such a clever brain, that he could still answer the questions appropriately.  A brain scan didn’t show any significant changes that were not consistent with his age.

Finally, we decided to stop Scottish Country dancing, because he could not remember the dances he had known all of his life, and he felt he was getting in people’s way.  He was becoming very embarrassed and frustrated.  Gradually, most social activities came to a stop. 

After one particular trip away with our friends, we were driving home in our motorhome; it was late afternoon.  He became very disorientated, and could not remember how to drive home, could not remember how to change gears, or what side of the road to drive on.  It was a very frightening time, so that was the last time we went away, as he would not accept that he had difficulty driving.

I resigned from my own job, in order to help my husband more with his work.  I had gently convinced him not to take on any large projects or design work, but to only do the simpler testing work.  I would find reasons to want to drive him to site to complete his work.  He could no longer remember how to operate his computer, but would constantly get angry with it, saying that it was stupid and there was something wrong with it because it wouldn’t work.  More and more I stepped in and would complete his reports for him. 

It was time to sit down and lovingly have a talk with him about retiring, as I felt he had worked so hard all of his life, and he deserved to retire so we could spend a less stressful life together.  We talked about the dangers and difficulties of continuing in our business.  Reluctantly he agreed, and this was a very sad day, as he had loved every day of his work.

It was after this time that I felt he was missing the mateship of working, so I contacted the local community health centre to see if there were any groups he could join that would understand his memory loss situation.  After a consultation with them, we were offered a referral to the Memory Clinic.  After several visits, the diagnosis of Lewy Body Dementia was finally given.

My husband joined a Men’s Shed that catered for his situation, but his mood was changing, and he would become anxious and agitated.  He was becoming very dependent upon me, and would not let me out of his sight.  He followed me around the house, constantly.  At home, later in the afternoons, he would become anxious and say he had to leave to go home, and could not be convinced that he was already at home.  He would say that his wife would be wondering where he was; he could not recognise me.  The night time was becoming more and more difficult, because he was constantly restless, and would become frightened and angry, thinking that I had broken into the house and was stealing his things.

As our children were all adults and living away from home, at first they did not really understand the full extent of how my husband was changing, because he was often okay during their visits.

I saw a newspaper article about the Woodend Lifestyle Carers’ Group, and after reading the article on dementia, I decided that I needed to contact them.  I sat and met with Cherry, whose husband had just been placed in full time dementia care.  She listened to me talk, handing me tissues at the appropriate times, and mopping up some of her own tears.  She was so supportive, and I left feeling more positive.  I decided then to attend their meetings when I could.

Some of the symptoms of Lewy Body Dementia are paranoia, hallucinations, anxiety, agitation and aggression.  Unfortunately, Lewy Body sufferers are very sensitive to many medications, so one has to be very careful as to what medication is prescribed.   Careful consideration was given, but none of the medications helped to change his symptoms. 

As soon as my husband became unsure about something that was happening around him, his anxiety would escalate, he would become fearful, start yelling and would start to physically fight to survive his perceived situation.  He could no longer attend the Men’s Shed or the bus trips, as anything unexpected that happened, or the extra noise on the bus would make him panic, and he would accuse the bus driver of driving on the wrong side of the road, or that he was speeding and trying to kill him, and he would try to get out of the bus.  If they stopped the bus, he would force his way off and would yell for help and not get back on to be taken home.

He had several inpatient stays at specialized hospital units where they aimed to assess him and find a medication that would suit him.  His stay was usually around six to eight weeks.  These were never successful and sometimes he would come home in a worse situation.

He was starting to wander off our property of 18 acres, so I couldn’t take my eyes off him, and had to deadlock our doors to keep him in, and hide the keys on my person.  There were times when I would take him out to the garden and try to include him in something of interest so he could have some diversity in his day and get some fresh air. 

We were getting to the stage that after a few moments outdoors, he would become anxious and accuse me of stealing his gardening tools or wheelbarrow, and would physically try to fight me for them.  On occasion, I would become distracted, and in an instant he would disappear.  I would frantically look for him.  He was a very fit and active man. On one such occasion, a car came driving up our long driveway.  My husband had sprinted down to the intersection at our front gate and waved down a car, and told the occupants that someone had just murdered his wife and he didn’t know what to do. 

I then had to quietly expIain to these caring people that my husband had dementia, and I thanked them for their concern.  I found myself feeling humiliated and ashamed; at that time I just didn’t understand how to cope with his symptoms. 

I was becoming exhausted trying to keep him happy, well and safe.  My only saving grace was that the local nursing home offered day respite, and I had my husband booked in for two days per week, for four and a half hours per day.  This was mainly because I wanted him to be able to socialize and have purpose and activity in each day.  You see, he was very physically fit, active and wanted to be busy.

Unfortunately, he found it very upsetting, as the day respite was in the aged care dementia unit.  They were all very much older and frailer than my husband, and it frightened him.  He would tell me that he didn’t belong there.  The only way I could persuade him to go there was to say that they needed someone to smile at them, and to sing songs and entertain them.  You see, in years gone by, we would go into nursing homes and entertain with our friends, by singing and playing music.

This strategy worked slightly, and he would hold the residents’ hands and sing to them (whether they liked it or not!).  Sometimes it was difficult and upsetting for me to leave him there.

My beautiful husband was becoming very unpredictable.  Nights were very difficult for him.  As soon as the light began to change late in the day, he would not recognise where he was and would pace and become angry because I prevented him from leaving, even though I thought I was quietly trying to reassure and distract him.  He would wake during the night and couldn’t understand why I was in his room, and he would jump up yelling and trying to fight me.

He no longer knew where anything was in the house, and would ask if I had a bathroom he could use.  He would become agitated if I used the vacuum cleaner and try to prevent me, saying it would electrocute me, and then he would perceive that I was trying to kill his wife.

I had tried to obtain two weeks of respite from various facilities, but when I declared that he had Lewy Body Dementia, I would be told that they didn’t take “that type”.  Finally he was accepted for a two-week respite stay by one facility, who stated they were a ‘dementia specific facility.  Unfortunately they could not manage his dementia and after a short stay, I was given the ultimatum to either allow them to call in a locum GP who would sedate my husband, or I would have to take him home.  Due to the sensitivities of Lewy Body Dementia with various medications, and the likelihood that the locum was not familiar or trained in the sensitivities with this type of dementia, I decided it was safer to take my husband home.

As my husband was very active and busy every minute of every day I tried to offer him stimulating activities that he used to like, and could cope with.  These consisted of writing a journal each day, simple puzzles, painting, drawing, playing his guitar, singing, dancing, and when possible, watching something on DVD that would make him laugh.  My son would come and play the piano and give my husband singing lessons.

After several more months of 24/7 struggles with these frightening symptoms, I managed to book a week’s respite, a few months ahead, at the local facility where he went for day respite.  Because I was worried how they would manage him overnight, I accepted the offer from an agency support worker to train the nursing home staff in how to sensitively deal with the dementia behavioural symptoms my husband displays.  The support worker did this in the weeks leading up to his stay. 

The big day came and my husband went to the local facility that he was familiar with.  He had only been there three days, and early one Saturday morning I received a phone call from the head nurse.  On answering the phone, her words to me were, “are you coming to get him or am I calling the police”.  I was horrified.  I was at the facility within fifteen minutes.  I found my husband sitting quietly at the dining table with other residents, and he had blood over his hands and clothes.  I rushed to him and asked the staff what had happened.  I was very simply told that there had been an incident, and I was to go to his room, pack his things and remove him from the premises.  The other staff members were not permitted to speak to me.  I had to ask for something to wrap around my husband’s hand to manage the bleeding until we got home.  I was given a bandaid, but they would not offer any further assistance. 

I was also told he could not return to the facility for day respite either.  I struggled with my husband’s belongings and led him to the car.  That was a very low point in our lives.

I tried to get in-home support.  At first I could get a carer to come for one and a half hours, twice a week, but I had to stay in attendance.  This was not at all helpful, as I still couldn’t rest or have a break, and in fact felt that I had to be super organized for someone to attend and watch my husband very carefully so that the carer was safe.   Word circulated about his “dangerous” dementia symptoms, and all help was withdrawn.

Sometimes I would call in to the local supermarket with my husband, so I could pick up a few articles of shopping so we had food to eat.  It was becoming difficult, so I had to be very calm and sensitive about how I dealt with this.   The last time I did this, he started to become agitated, and kept trying to pull the trolley away from me.  I started humming and singing to him to calm him, but he wanted to push the trolley into the stacks of food at the end of the isles.  I decided to head to the register so we could pay and leave, but half way down the isle-way, he started yelling out loudly, “help, help”.  Everyone disappeared in a hurry and left us alone.  I phoned my son who spoke to my husband and changed his focus and settled him slightly.  Finally I managed to get him to the register, where the staff member asked, “how has your day been so far?”  I quietly answered, “didn’t you hear the yelling?”   She looked a bit embarrassed and slightly shrugged her shoulders.  

Not one person came to see if we needed help.  The drive home found many tears silently rolling down my cheeks.  Life became very lonely

There I was, alone and trying to manage and care for my husband without supports.  My children were very supportive and loving, and occasionally tried to stay with their father while I did shopping etc., but he had great anxiety when I wasn’t around, and he would become quite angry and aggressive.  I could no longer take him in the car for minor outings, because he would become anxious and try to grab the steering wheel.  He would often think I was abducting him and try to fight me or jump out of the car.  Every hour of every day was spent beside my husband trying to prevent him from hurting himself, hurting me, or breaking things.  Our house was deteriorating, with doors being kicked and broken, fly wire doors had the wire pulled off, door knobs were removed etc. 

I would use music, and we would dance and sing, as he liked that, but it was a fine balancing act.

We were becoming very socially isolated, with most friends and extended family just making the very occasional phone call.  My husband’s anxiety would escalate while I was on the phone, so in some way I dreaded the calls.

I had to hide the telephones after several incidences when I heard my husband talking, and on investigation, I found that he had dialled 000 and asked for police, telling them that someone was killing his wife, and trying to kill him.  It was so difficult to try to convince the worker on the emergency line that my husband had dementia, and I was so sorry for the call.

For about two years, I really hadn’t slept.  I merely dozed and jumped out of bed as soon as he woke.  Most nights he would get up around 12 to 15 times, and often would talk incessantly, sometimes yelling, ranting and raving.  I had to be very careful how I dealt with that, as most times he perceived me as the enemy, and I had to make sure that I did not let him get between me and the doorway, so I had an escape.  I had to lock us into our bedroom and ensuite at night, as I feared I would fall asleep from exhaustion and he would harm himself, or me.  There were so many dangerous ‘weapons’ in the house – cutlery, crockery, electrical appliances, picture frames, the wood fire etc.  I would sleep with the keys on me.  Some nights he would pull the bedding off the bed, and it would be difficult to keep the bed together to sleep in.  Most days he would pull things out of cupboards, sometimes putting clothes up his jumper or hiding them under the bed, so I was constantly trying to distract him and quietly pick up after him, so as not to challenge and upset him.

The situation is so different with dementia, as although they often go back to behaving like two year olds, they are not learning like two year olds; they are unlearning.  So therefore, you are unable to use the disciplinary tactics you would use with behavioural problems in children.

Well-meaning people would tell me it was time to place him in full time care.  Although I had always thought I would keep him at home and care for him myself, I was fast realizing that I could not keep us safe.  I knew that my family constantly worried about my safety when they were not able to be with us.  My motto every morning was, ‘don’t take anything personally today, because it is not’.  My husband didn’t choose his dementia, and this behaviour was his dementia symptoms, not him.

However, I had no choice but to keep him at home, as there was not a facility that would accept him on a permanent basis.

At this point, after research, his medical practitioner decided to place him on another medication in order to settle him slightly, so that we could try for respite again, as I was crumbling fast.  She arranged for him to be accepted into a facility for respite, and they would start this medication.  They were very good to him, but each day that he was there, the family noticed and mentioned to staff, that he was  becoming hyper-active and agitated.  There had been a couple of incidences with his outbursts, but they somehow managed them.  A few days before he was due to come home, he developed gout.  He was prescribed a steroid to manage it.  I was told by the facility, that unfortunately they could not have him back until he was more “settled”.

The two week respite was over, and that morning my daughter came with me to bring my husband home.  She would drive, and I would try to manage him and keep him occupied in the back seat.  It was a difficult trip home.  During that day, my husband was very pacey and agitated, and we both tried to soothe and settle him.  He was lashing out at us.  By early evening, we couldn’t settle him, and things were escalating.  He was climbing on furniture, pulling curtains down, grabbing lamps and throwing them, in fact throwing anything he could pick up.  He was kicking, biting and punching at us.  Finally my daughter came behind him and restrained him, calling for me to phone for help. 

This was the hardest thing for me to do.  I knew that if I called 000, they would not only send an ambulance, but police also.  It was devastating.  Fortunately, the beautiful daughter of my friend in the dementia support group, who is a police officer, was on duty that night and heard the call come in.  She contacted the officers who were to attend, and explained the situation and asked that it be handled carefully and sensitively.  They were amazing.  They gently and slowly settled the situation so that the ambulance officers could attend.  My daughter was also devastated that she had to take the steps of restraining her own father.

Consequently, my husband was taken to hospital, and after a few days he was admitted to the dementia ward; unfortunately they couldn’t manage him.  Finally he was admitted to an Aged Persons Mental Health Unit within the hospital, where they had psychiatric training to try to help him. They finally determined that the new medication and the steroid had sent him into a psychotic/manic type state.

He was still resistive to personal intervention, and staff members were not attending to his hygiene needs because they were frightened of his unpredictability.  I would drive to the hospital to shower and dress him first thing in the morning, and employed my usual tactic of singing and dancing in the shower with him to try to achieve a more settled outcome. 

It took me some time to learn to sleep at night when he was in hospital as my sleep pattern was non-existent.

My husband was in the hospital’s Mental Health Unit for 11 months, until he was finally accepted into a facility in Bundoora where they are trained to cope with psychiatric and dementia behaviours.  I visit him every second day, and my children visit him on the days in-between.  We try to bring quality to his day, with singing, music and dancing, along with walks in the garden.  He still has outbursts, but at least the staff members are trained to understand, and not alienate him because of his dementia symptoms.  He deserves to be treated with respect.

I adore my husband, and live for the very rare moments when he recognizes me and says he loves me.  I know that all too soon he will lose this ability as well.

The very sad fact is that there are so few facilities offering respite for dementia, and so many facilities are closing down due to lack of funding.  As the various forms of Dementia are increasing enormously, where will our loved ones go to be appropriately cared for, and how will the carers cope without adequate support and respite.

Through all of this, I could not have managed without the Woodend Lifestyle Carers’ Group.  I was able to learn more about dementia, understand why my husband was exhibiting these behaviours, and given coping mechanisms.  I have found some beautiful friends within the group who understand and accept the person behind the dementia.  This emotional support has brought me through so many hard times.  I have always been able to voice my feelings without being made to feel embarrassed or ashamed.  I now feel that I can give back to the group, and offer support to those who are treading similar steps to mine.

I know there are more emotional times to come, but with the support from the group and family, I have the confidence to live for the day, and appreciate what I have today, rather than dwell on what we no longer have.  Every moment with my husband is precious, and he is still my best friend.

Rosemary

Jan's Story

Unknown to us my husband had Alzheimer’s in his 40’s but it started showing in his early 50’s. In the beginning I thought he was just forgetting things due to him having such a high pressured job, so I just let it go.

When his memory got a lot worse I purchased alternative medicine thinking that it would help but it didn’t, he then started having mood swings which I put down to depression. It took me at least a year to talk him into going to the doctors who started treating him for depression.

After a year of him taking anti depressants things were getting worse, I then knew it was something else.

By the time I convinced the doctor that I believed my husband was suffering with Alzheimer’s he was in his late 50’s.

The GP gave him a mini mental test and to his surprise & mine my husband couldn’t tell the time, draw a clock or spell certain words. We then went on a waiting list to see a psychiatrist who would then request the brain scans.

I didn’t want to wait for months to get an appointment with the hospital so I sourced a good psychiatrist who specialised in dementia. Within two weeks my husband had blood tests, an MRI which showed what we expected and then a PET scan to show how bad it was. That was 6 years ago now (2016).
I cared for my husband at home until 2 & a half years ago when I ended up very ill myself and with my specialists advice I needed to put him into care.
Not many people realise that 40% of carers die before the person they are caring for.

It was extremely hard to put a young person into aged care; my husband was in his early 60’s but a very young person at heart and to look at.
The hardest thing wasn’t just getting him into a good facility but finding one that had other younger people there and who would also prevent him from getting bored.

It was hit & miss for a while but eventually with the help of Alzheimer’s Australia early onset dementia program we found a good home which was a community based facility who were much more attentive than the two privately run care facilities that I had tried him in.

He is now at a stage where he cannot walk, talk or feed himself.
It’s a heartbreaking disease that only people that have seen first hand can really understand.


Thankfully I have The Woodend Carer’s Group who has many members that has been and is going through the same things.

Whilst going through this nightmare I felt absolutely lost, exhausted mentally as well as physically and had no idea which way to turn or who to talk to.
I felt guilty when I got angry but have since found out that everyone that goes through this as a carer feels the same.

Filling out all the paper work and going to the different doctors and specialists becomes overwhelming. Your head just spins when you have to fill out another form or go through the whole story with a new doctor. It’s extremely hard & many a time I just cried which I’m sure many people do.

Friends tend to stay away, they don’t know what to say or how to treat or speak to the person with the illness so I figure just they think it easier to just avoid the situation.

The new friends I’ve met through the carer group are very understanding as they are or have experienced the same things.

 Even though my husband is still alive it’s a continual nightmare with watching him deteriorate, I haven’t lost him physically yet but lost the life I once had and the one we had planned for.   

I visit him most days at the home but he doesn’t know me anymore, of course that was something I knew would happen but it still breaks your heart to know that the person you were married to for many years isn’t really there anymore.
It’s hard to leave the home each day and very sad although I must say I’m very lucky that he is in such a wonderful care facility.

 

Jo's Story

Before emigrating to Australia, my husband was a County Councillor in England for ten years, and a Town Councillor and Mayor of our home town.  He had a remarkable ability to learn pages of dialogue which stood him in good stead for some of the characters he played in amateur theatre.  So, please don’t let anyone tell you that if you don’t use it, you lose it!

Dementia is an insidious disease, it gradually creeps up on you until suddenly you realise that it’s all real – it’s not just your imagination and intolerance – it’s not you going potty, you really didn’t have that conversation your husband is insistent he had with you.  It takes you unawares until family and friends start to notice that “something’s wrong” and perhaps you really need to talk to your GP about the changes in your loved one.

Unfortunately not all GPs will agree that there’s anything strange or wrong – “what do you expect, he is in his seventies – we all become forgetful on occasion.”  You try to explain, but then even as you say it, the words sound mean and disloyal.

For me the lack of understanding on the part of my GP meant that it was almost two years before we finally managed to get an appointment at the memory clinic in Bendigo.  I do wonder how many boxes of tissues they go through every week with people like me finally being able to respond to the pages and pages of questions on what my role of wife, friend and lover had turned into in the past few years.  Finally someone was hearing me.  Finally I was able to admit how stressful our day-to-day relationship had become.  How hurt I was by the lack of empathy;  the lack of logic – it being impossible to explain why certain things had to be done;  why his driving scared the living daylights out of me;  how exhausting it was repeating the same answers over and over and over again, while trying desperately to remain calm, serene and understanding. How embarrassing it could be when he accosted complete strangers in the street or a restaurant and behaved as though they were long lost friends.  How claustrophobic it felt being followed everywhere – including into the bathroom, and how annoying it was to not be able to have a telephone conversation without him standing right beside me and either writing silly notes or trying to grab the phone.

How amazing it was to finally speak with someone who understood that I was doing my best to care for this stranger who looked like the man I married more than forty years ago and who I was growing old with, but who no longer behaved in the moderate, thoughtful and loving manner of our earlier years together.

The outcome of that interview, an MRI and various other tests was a diagnosis of Alzheimer’s.  What a dreadful journey home it was – I’m insane, they’re saying I’m insane – No sweetheart you’ve just got some memory problems, you are not insane, the MRI just showed some problem areas which account for the way you feel sometimes, but now that we have an official diagnosis there will be people to help us out.

The process had taken from April to September but now at last we were ‘official’ and the confusion started in earnest now with visits from the ACAS team in early October and then by a Bendigo Health Carers Support worker, in late October.  We were now “on the books”.  We were known to the “Swan Hill Rural City Council – Loddon Mallee Local Government Consortium via the Macedon Ranges Shire Council” which was arranging a case manager for us.  Oh, the confusion of all these different people.  But it was good to know there was a system out there and that these people cared.

In November we attended the final session of a Style Café which had been organised by Carers Support in Castlemaine and was also attended by a Consultant with Alzheimer's Australia Victoria.  The group of four husbands and wives were thanked for their interest and attendance over the eight or so weeks the group had been meeting, but were told that unfortunately there was no more funding available for the foreseeable future.  How disappointing.  My husband and I had just found out about a help group only to be told it wasn’t continuing.  But, hang on, was there any reason why we couldn’t do this for ourselves?  Did we have to meet others in the same situation only by ‘official’ means?  Could we not exchange details and meet for coffee occasionally somewhere?  What a great idea!  Bendigo Health offered to fund a room, perhaps at the Neighbourhood House where we could meet; they’d do some investigating and get back to us.  Since I was the one with the ‘big mouth’ and a computer, it fell to me to become the contact point for this to get off the ground.  We left the luncheon having exchanged contact details and with the promise of getting together very soon.

My next contact with Alzheimer’s Australia Vic was in early January when the consultant  made a house call to introduce herself properly and to let me know what Alzheimer’s Australia Victoria was all about, and how important it was for me as a carer to look after myself as well as my husband.  She explained all about the services which were available and left me with a considerable number of leaflets and booklets to make my way through.   A short time later we received an invitation to attend a series of weekly morning sessions in Bendigo where we were introduced to seven other carers and their ‘cared fors’.  These sessions were incredibly lifting, not only because of their informative content, but also the contact with others who were travelling the same journey, be it with their husband, wife or parent.  It was also immensely helpful to have a variety of speakers telling us about things like, powers of attorney, companion cards and other useful tools.  It was a great opportunity to speak with other carers and realise that although our problems may differ, we were really in the same boat, and how good it felt to know that I was not the only one to ‘lose it’ and feel guilty afterwards.

At the same time that we were attending these sessions, Carers Victoria organised a public get-together of carers in Woodend.  Although this forum was more general and included carers of people with many other disabilities, there were a number of seniors present who were looking after someone with dementia and other forms of memory loss.  What a great opportunity to meet and exchange contact details.  

That was on 8th March 2012 and on 14th March, with Bendigo Health's assistance a number of seniors from various townships in the Macedon Ranges turned up for the first meeting of what was to be called the Woodend Lifestyle Carers Group.  

For me, the group has been my life-saver.  I am no longer isolated socially, and have genuine friends who know where I am coming from, and who don't judge me.  It's a long, hard journey but the love and understanding shown to both my husband and myself will last forever.

   

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