To the world you may be one person…

Thanks Dr Seuss

Why did things go wrong?

The back story to all this current misery is a long one but to answer any questions about why we are where we are — here it is.

Ray and I had it all together back in 2010. We had Willow (the first one) and we had her set up the way we wanted. We had spent our savings on getting her fixed up during 2008–2009 and she was simply lovely. We had sailed from NZ to Fiji and then to New Caledonia and then ‘home’ to Australia. During our time in NZ I spent lots of quality time with Mum and loved being so close (geographically)again after nearly 25 years living in Australia. I did note that things were sometimes a little odd with Mum but nothing you could put your finger on.

I rung Mum from all round the Pacific but in New Caledonia was the first time I really thought there might be a problem. She had forgotten which country we were in BUT we do move around a lot so I put it down to that. But upon our arrival back into Australia she again forgot that I had rung her the day before. So we decided to wait until after New Years Eve as we international friends with us then, to then ring my brother James and get him to check up on Mum.

James beat us to it by ringing and asking me to come over and sort it out because Mum was in hospital. So one urgent flight later and I was with Mum who had been discharged from hospital. Diagnosis was malnutrition and dehydration with associated confusion. This was the beginning of the worst four years of my life. Mums’ then husband Jim is a nasty vicious old man who proceeded to make our existence as miserable as he could.

Mum was ill — very ill but the diagnosis didn't sit right with me. I suspected something much worse but it took many months to get the diagnosis right. Mum had nearly died in the house before James found her and Jim wouldn't do anything to help her. (His only defense was it wasn't his job to feed the ‘bitch’ it was hers to feed him.) But she was now home and I was feeding her and monitoring her but things kept getting worse. She would forget she had just had a cigarette and demand another which created a problem in itself because Jim wouldn't allow her to sit outside the door to smoke anymore because he could see her! So out the laundry door we would go to sit out in the elements so she could smoke. I tried so hard to get her to reduce her smoking but she became so distressed and agitated that it became safer to just let her smoke. The final ‘click’ for me was when I woke early one morning to go check on her again (I was up 4–5 times a night to her already) and couldn't initially find her. I found my lovely ladylike mother sitting in a puddle in the rain ratting through the butt bin trying to find a butt long enough and dry enough to smoke. I tried to stop her and she started banging her head on the brick wall! My world collapsed at that very moment.

Words cannot express my horror and sorrow. I cried for hours sitting with her outside while she smoked over 50 cigarettes. Dementia. Whatever the cause …………………Mum had dementia coming on and it was coming on really fast. Our world exploded that day with uncertainty and sorrow and hell. Mums world diminished everyday with each day becoming more confined and confusing for her. Jim became more and more aggressive and abusive screaming abuse at us both for hours on end. Mum and I retreated into our own little world in her bedroom for safety whilst I tried to work out what to do.

As a nurse of many years experience I knew the resources available to me within the system in Australia but here I was stuck in NZ with no idea where to go or who to contact without a lot of guidance. Doctors, Therapists, Nurses, Alzheimers association, Aged Concern you name it I was there on the doorstep pleading for help. The abuse at the home was getting progressively worse but standing up to him was not really possible. I was so terrified of him hurting Mum that I had to tread carefully. Where was my brother whilst all this was going on? Two hours away and unable to help out as he was working full time. So I coped as best I could on my own with a mother who was so desperate for reassurance and so completely off balance. She was up and down all night so that meant so was I. She napped often during the day and I would often take this time to whip out and do the shopping or medical visits or whatever needed doing.

Finally we had a glimmer of help when the Mental Health Team got involved. Mum was reviewed several times and the decision was made that she was to be admitted to a nursing home, Lennox Cottage, for a two week period for a complete assessment. Mum was so completely confused that she honestly believed that James would come and rescue her and take her home to Hamilton to live that she would yell and scream constantly. James never came to visit her in that first few weeks so I rang him regularly only to have him laugh about how bad jim was or to snigger about the situation I was stressing about. No support. Mums life was falling apart and the only support I had was Ray 1500 miles away in Australia by phone.

I did take Mum to a nursing home in Hamilton that James suggested however they determined that she was a wandering risk so they refused her admission but suggested a place 20 mins south of Hamilton. James refused point blank to have her there as it was too far for him to travel so I had no choice now. We had to stay in Taupo and try and sort this all out.

The abuse came to a head late one afternoon with Jim becoming so verbally abusive that I ended up recording the conversation to protect myself and Mum. It ended badly with Jim threatening Mum and I with physical abuse in the form of his son coming over and evicting us from the house. We had to leave and leave quickly so I spent the evening packing Mums clothes and getting her into bed. She was sobbing in terror and not being able to understand made it so hard on her it was horrible to watch. I cannot to this day understand what horror and fear Mum must have gone through. Her world was collapsing, she didn't understand why — and now her husband of 22 years was threatening her with violence to get out of ‘his’ house.

Very late that night I rang the nursing home that Mum was due to go into in two days time and explained that Mum was at extreme risk now. Sandy Pearce the Nurse who owned this home was so wonderful she took control immediately realising that I was at the end of my tether. I hadn’t slept properly for over three weeks at this point and I wasn’t functioning on all cylinders to say the least. Sandy was brilliant and so bloody fantastic that I could never thank her enough. She told me to bring Mum straight in if I needed too but with her guidance and supportive professional evaluation of the situation it was decided to leave Mum in bed until early morning and then take her in. I just had to keep her safe for the night. No one can understand how awful that last night was — I had sedated Mum to help her settle she was so terrified. Jim stalked the house several times during the night even opening my bedroom door to turn on the light and opening and closing Mums door several times. We just had to make it through the night.

At first light I had Mum out of bed, dressed and in the car. I told Jim we were doing as he demanded and I was taking Mum out of the house. Jims only concern was Mums car — when was I going to return it to him? We retreated rapidly with Mum crying buckets being unable to understand why she had to leave her home and her beloved cat Abbey to go to a nursing home. This was the beginning of the end for Mum. She just couldn't understand why she was there and why I was making her stay there. No amount of explaining could help her understand — the tears and heartache were incredible and I was still coping alone and I was now homeless too. Ray was still in Sydney trying to move Willow to a safe place on his own (which isn’t easy on a yacht not designed to be sailed single handed) so I was worried about him too.

Mum went through so much in those first few months and the costs went through the roof. I cannot even begin to explain how much money we were going through with me having to pay rent, Ray paying for a mooring, Mums costs were $1600 a fortnight plus all the extras that needed doing. We were financially going under in a huge hurry and we couldn’t ask James to help and nor did we want too. James was a bankrupt so we decided not to burden him and Nic in anyway with financial problems because they had no money to give. We had to protect them from the financial burdens associated with all this.

The only solution was to sell Willow in a big hurry. So I flew back to Australia and we stripped Willow out and I cried and cried the whole time…………….. as did Ray. This broke our hearts but we were left with no choice. Mum needed us and we were there for her. Sadly though James wasn’t — I begged James to ring Mum even if only just once a week but it never happened. I asked him to visit her when he passed through town but no he was too busy. Mum grieved so badly those last few months. She grieved for the son she loved but who wouldn't see her and nothing I could say could explain to her why this was so. Some people suggested that maybe James and Nicola wanted to remember Mum the way she was before and that was why no one visited. This is very possible but to anyone in this situation — don’t think of yourself — think of the person first. Mum needed help and support and love. Her needs should have come first for everyone …….. but no one came.

Within just a few short months Mum went from confused to not recognising me. That first time I walked in and she didn’t know me was like a knife through the heart, where had my Mum gone so quickly? She was there in body but her soul, her essence was gone. The body, the face, her very smell, her eyes, her very occasional smile were there but ‘she’ wasn’t. That is a really hard concept to get your head around and the grieving goes on and on and on. They are gone but they aren’t gone so when do you grieve thier loss? Now? Later? It hurts everyday and doesn’t stop even now — she is gone but she is there, she is in a better place but she is in hell. This is a pain that has no real end or closure or even reason. Dementia is cruel but cruel only to the family not the person. My only relief comes when I know that Mum doesn’t know what is happening and she lost her mental capacity so quickly that she mercifully didn’t suffer past that first few months.

The next three and a half years was spent fighting through courts, lawyers, mediation, offers and counter offers with Jim. He has never paid a single cent to Mum for anything. Jims argument was that despite 22 years of marriage it wasn’t in fact a ‘real’ marriage. The Judge allowed this argument and allowed Jim to keep all ‘his’ money. Mum didn’t have a cent because she paid for everything! The NZ legal system let Mum down so badly and I had told her that the system would protect her. I feel so bad about that, I had tried repeatedly to get her to leave Jim and seek help from the law but she didn’t and I think now she was wiser than I in not believing that the ‘system’ would make sure she was ok. Poor Mum now was truly destitute with significant debt. Because of her deteriorating mental health she had been running up huge bills on her credit card and then only paid the minimum amount each month or less. She didn’t understand …. she just didn’t understand.

Ray and I sold Willow and we took a huge loss. A loss too big to recover. The financial loss hurt but combine that with the emotional loss and Mums condition and it was a very sad time for us. It was a long long time with no help or familial support for Mum. My lovely man and I did it all we saw Mum everyday and took care of everything and I did finally reach a settlement with Jim. Finally! it took years and years but we got there. But the system doesn’t just let you go without a final kick. Legal Aid had paid for most of Mums legal costs after the first few months so that had taken some burden off us. Then the minute we got a settlement they demanded their money back. Mums settlement only comes once Jim dies or moves into a nursing home and then the house is sold and only then will she get a financial payout. But Legal Aid wanted their money now OR they offered us 8% interest per annum cumulative if we wanted to wait. Needless to say we paid that one too.

Finally the legal wrangling was over, the settlement will come one day and Mum is doing fine. She has no idea if anyone is there anymore and she hates being touched or talked too and will get quite agitated if you do so. For my sake alone I still visited everyday but she gets no benefit from it, in fact it makes her upset now because she prefers to be left alone completely. So Ray and I decided to put our lives back together again and start to ‘live’ again. Mum had always loved to hear about our travels and had in fact spent a lot of time with us travelling on our first boat and coming overseas with us. Mum would never have wanted us to stop travelling, and although I know this, it was still an incredibly stressful decision to make.

To start to ‘live’ again and get another boat we made the decision to sell my investment property. That too is a huge wrench selling my asset to replace something that we had already had. But we now didn’t have enough money to get a boat as good as the first Willow. But I truly believe that it was the right thing to do. Ray had given up his home, moved countries, paid for Mums expenses and visited her everyday with me. This man is the most special of people who gave up all that he had worked for his whole life JUST to help my Mum. I am forever eternally grateful that I met the most amazing man and I am also glad that Mum knew him and loved him too.

Ray treated my mother so much better than her own son. My relationship with my brother is now gone with no hope of retrieval. James has accused me of being a thief because I asked to be partially reimbursed once Mums settlement comes through, for some of the money we paid out to look after her. Despite our paying for everything and doing everything with no help from James and Nic at all we have been deceived as well — they have no intention of reimbursing us. Whilst we were having to sell our home, leave the country we lived in, sell my investment property and cope with everything we thought we were protecting James through his bankruptcy. The hurt and utter shame I felt when one month out of his bankruptcy he purchased a Lamborghini is indescribable. Ray and I protected them for three years and even turned a blind eye when they had overseas holidays and first class flights to the UK but the car was a true smack in the face.

James and I stand to get nothing in Mums Will but in his capacity as her executor I asked James to give us half the estate to partially reimburse us for all that we have paid out and he could keep the rest and walk away free and clear. We would still be out of pocket but I felt this was fair. James has asked for Mums ‘receipts for review’ and he will ‘give us his findings’ on possible reimbursement for Mums ‘direct costs only’. The embarrassment I feel at the way he has treated both Mum and Ray knows no bounds. Thanks to his refusal to even discuss any repayment with us we are now forced to go back to court when Mum finally passes away. My poor mother she would be horrified at the way she has been treated and the end result. My emotions - shame, anger and grief are like acid , — it burns, it is crippling and is relentless. I wish I could just learn to let it go and just accept that my brother is not a nice person at all. But I feel so betrayed. I trusted my brother to do the right thing by Ray and I and I was wrong so very very wrong.

I lack the capacity or ability to forgive James for what he has done. I know it makes me a bad person to not be able to forgive him — and I know I should be a better person………… but I am not. I have suffered with horrendous depression and crippling anxiety over the last four years and I still don’t see an end to it. My stomach still churns at the thought that I have done everything for Mum but I failed to protect Ray and I.

Mum is still incredibly healthy and I ring most weeks from the US to talk to the wonderful staff who look after her. I miss her every day and still find myself thinking ‘Oh I must ring Mum and tell her about this’ or ‘I wish Mum was here to enjoy this with us’. That doesn’t stop ever I suppose? Mum would have so loved all the little things like the dolphins in the waterways and the pink birds wading in the rivers but especially the Manatees. Mum just delighted in travel and the people we met as we went.

Ray and I have reached the end of our financial rope so all things now will have to wait until ‘one day’. But I am so lucky too with a partner who is loving, kind and gentle. My love knows no bounds for this wonderful incredible man who blesses my life with his presence.

We will go on…… we will. A lot wiser and a lot poorer too. But this is the life we live so we will make do and we will come through all this agony one day.

Sometimes Pooh just says it all.

I love you Mum. I will make you proud of me. XXX

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