I Got That From Her

On This Day five years ago G and my son and I had a great shop at our local Vinnies in Swansea. We stocked up on lots of clothes for Mum as we knew she would need a lot for when she went to Respite in the Care Home. She needed warm clothing, nightgowns and dressing gowns and shoes and slippers.

She loved cardigans, indeed one day a gorgeous softest silver grey boucle cardigan arrived for me from eBay UK and when mum saw it she beamed cheekily and grabbed it and said its mine. Of course I gave it to her instantly. As she had with me as an adult. She would literally give me the clothing off her back. Come to think of it I got that from her as I do that too!!

Shopping was pretty exhausting as we trotted off to Coles to stock up on food for the folks. Mum had eaten us all out of house and home again! When I got back I left the youngsters to unpack and escaped to my little retreat way downstairs where I read and knitted each afternoon after getting everything for my parents organised in the morning. I loved it down there though it was starting to get very nippy.

We brightened and personalised the empty space by rearranging the furniture and adding a cube bookcase, a big faux leather storage ottoman and some affirmation plaques. Very much needed after what we had been through for the last year. G has them now in her flat, I no longer need them as I am on the other side of everything now.

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Where I Choose To Be

Yesterday was my late mum’s birthday. But that was not why it was such a difficult day. In the morning I rang my dad in the aged care home. He has dementia, stroke damage and stage four Prostate Cancer and he was very worked up and totally out of it with agitation. He told me he had manhandled and literally thrown a lady out of his room and that her friends had come to help her. Dad had swung at a man who used to be a fighter, who said he ducked. And dad told me he was going to get a man, later on. He has never been fond of people he finds stupid and these people are demented, bless them.

My son and I then set out after lunch for my appointment with Dr Russo of The Hunter Pain Clinic in Broadmeadow. It’s a level one pain service where medications and injections and ablations into and of nerves occur, unlike at John Hunter Pain Management. I went six months ago, found great success with my SFN and other neuropathic pain due to past surgeries and mesh. It is a lovely bus trip by the lake to Cardiff and then a train to Broadmeadow. Unfortunately it’s a long walk for me from the station, I know now to get a taxi from there. Silly of me not to, I was overconfident.

At some stage of the day the AINs told dad his blood pressure was up, probably to try to get him to stop fixating on the men he particularly hates. So he started phoning and when he could not get me he left messages. Three before I wised up and stopped taking the voicemails. Each was worse with him crying, wanting to go to hospital and beside himself thinking he was going to die.

Meantime my son and I waited over an hour for Dr Russo, who was brilliant as always. He said I needed to increase the Lyrica in my Neuropathy cocktail by 75mg. After that nerve ablation of the Femorogenital Nerve and the Illinguinal Nerve on the left side is all that is left to do. He also wrote that I could have a sustained release painkiller, Palexia. All I use at the moment is Panadol Osteo.

The trip home was a long one. To avoid the walk to the station we caught two buses, one to Glendale which was forty minutes and then a bus home which was around twenty. I stopped being a nasty snarly bitch to my poor ever suffering son once off my feet and on the bus and dropped into a ten minute retrospection ending in quite the insight. I have had moments of clarity before but never quite like this.

I was wondering if it was worth it. Really. To have Small Fibre Neuropathy pain so badly that I had needed a walking aid to get around. The pain so unspeakable I found it hard to describe it. And to lose that pain totally for four months only to have it start to return? With no real hope of it ever going or being controlled. More so with the unbelievable mesh pain beside my stoma. Would I have done it if I had known? Would I not have been better to not have that wonderful break, only to have to learn to deal with the agony again?

And yet, if I had not tried the cocktail, I would never have got off the walker, might even have been encouraged into a wheelchair by now. I would not have had the courage to meet up with my man of many voices, not in an intimate way. Would not have started any relationship at all. Talking to Dr Russo I realised how much had changed since I saw him in November. For the good. Life is full of joy for me, despite the pain. Or in part because of it I truly appreciate life and the beauty in the world.

So yes I would have tried the drugs, I would have knowingly tried them even if they had told me they would not continue to work much beyond the six months. Because where hope is is where I want to be. Where possibility is is also where I am meant to be. Where determination is is where I choose to be.

But for dad, my quandary is very different, to hear him at 4.59 this morning. Crying. Because he “does not know what is happening.” The catch cry, especially of the Vascularly demented. What is the point in prolonging his misery? His fear? His degradation? Should I have ever let the specialist put him on the Zoladex which is stopping the Testosterone which is fuelling the cancer? It will wear off by the end of this year anyway but it’s month upon month of agonising fear for my dad, a once proud, strong man. Can I in good conscience ask for it to be stopped? And let the disease take its course?

In other countries he might have been able to choose his death. But dad thought he was immortal and never prepared for old age. Now I am trying to look after us both. Making tough decisions for both of us. Mine is just pain, it will not kill me though the increase in Lyrica will likely affect my memory. But only while I take it. Whereas dad is going to die. A long, drawn out protracted death whereby he slowly withers away. Even now he is dehydrated. He could choose to stop eating at any time. It happens. And I will be here witnessing it, but thankful my mum did not have to. That she was taken before that. She always looked after dad, he was her first thought in the morning. Her duty was to care for him. Her duty born of love. Mine is a different love, but mum knew I would look after him. It is who I am. And who I am is very much someone who questions suffering. Suffering, the kind that does not enrich life, only demeans and terrifies our elderly. Our loved ones with dementia.

 

 

Mother’s Day 2018

Wishing mum’s everywhere a truly wonderful day, while thinking of the people who no longer have their mothers. There is also the unspeakable grief of the mother’s who have lost their children. I know a few and my heart goes out to them. Usually I find they are the first to wish me a Happy Mother’s Day.

This is the first Mother’s Day since 2014 that I did not cry when I awoke. My mum passed away mid that year. I never thought I would be able to get over the unrelenting grief but life is full of possibilities. It goes on regardless of our feelings or of what is happening in our lives.

I had one Mother’s Day with mum in her large home, just before she went into care and one the next year, where we spoiled her rotten before celebrating our own little family. I bought mum a beautiful aqua boiled wool jacket which she wore for one outing with me after that. She died suddenly a few weeks later.

I have added some photos of my mum throughout her life. She was full of fun and cheeky at the beginning and end of her life and I was truly blessed to share those years with her.

Too Many What If’s

My mum and her dog last time we visited in 2010 before dad’s stroke in 2012. I can see here she was frightened, bewidered. But I did not know she had dementia or was being mistreated because nobody up here told me until it was too late to help her.

One of the reasons I had my Ostomy surgery was so that I  could come and stay and help out. If only I had not delayed the surgery for so long. If only I had left my then husband sooner. If only I had known then what I know now. Too many what ifs.

But when I did know I did something. And the timing was amazing. It is what we do with what we have or find ourselves dealing with that counts.

Sharing The Joy

On This Day five years ago we left Sydney and everyone we knew to stay for a little while with my parents while we worked out where we could afford to live.

Five years later and we are a little further north of where they were in Lake Macquarie City. Mum has passed away and dad is in a brilliant care home very near us. Their house is looking great as the new owners are engaged in living in every room. Very different from the reality of Alzheimers where my parent’s lives had shrunk down to a bedroom and a combined kitchen dining area and sitting room, on one level of their three storey home.

My parents had just been released after spending many many weeks in hospital in April 2012, They had been left at Belmont Emergency Department by my sister who had looked after them for the previous seven months or so and had decided that she could no longer cope. This happened without my knowledge until my uncle let me know. My parent’s State Guardians did not even let me know.

We had no idea of their condition as we had spent so much time trying to get help for my then husband since Xmas Eve when he first told us he had wanted to jump off the Gap. We had also been unable to visit them while my sister was there as she was being vicious about my putting in papers for Guardianship for my mother. The hospital social worker in July 2012 had put papers in for my father after his then life threatening stroke and I was advised to do the same by ACAT and others. I was actually talked through the process in 2012 by the ACAT nurse assigned to my parents.

We were already traumatised by events in Sydney, leaving behind both good and bad memories there and to see mum especially like that was, well there are no words. She recognised me though and started crying bless her. Within a few days I had taken them to their many doctors and met their State appointed Guardians. Also many many lovely carers. Karen and Helen especially were brilliant and now are much treasured friends.

We were all taken to Cessnock by my brother to see his family and look at a house we were offered by the Department of Housing there. C had received a text as we travelled north to Swansea about the house actually. It was not suitable as it had too many steps and was in the Ice Capitol of Cessnock but we had a wonderful day catching up with my nephews and nieces.

It also clarified for us that we could not be that far away from my parents. After that I did not have time to dwell on anything. Looking after two demented people in a three storey house was not easy but somehow we did it.

Good indeed can come out of bad. Sometimes it seems that one cannot go on. Life can change in an instant. Putting my red lipstick on, gritting my teeth and just getting on with things when it seems it is impossible is second nature to me. Now however I can smile and enjoy getting on with things.

Life is so calm and peaceful here by the lake. I have reconnected with so many friends and made new ones, deepened existing friendships and now have a wonderful man in my life that I both am in love with and love. He is my best friend, my writing mentor, my life teacher. And such an unexpected gift of pure joy. Life is constantly evolving and I am so thankful for the lessons I learned care of dementia.

To live in the moment. To cherish those I love and to take time to visit them and show them that love in action. To take time to share the joy with others, who knows what it might mean to them? We did not know what was going on all those years we visited my parents but know that they were loved and treasured by so many people up here. I would like to think that I am part of the community, that I can be of use to others. The way strangers were so good to me five years ago.

Timing Is Everything

In July 2015 I bought a small unassuming cabin with a nice sized garden. The place is Land Lease in that I pay for the use of the land and utilities. This is becoming a popular thing with Baby Boomers who need money for their retirement, or like me have little money after bitter silver divorces. The actual park has masses of huge trees and flowering shrubs which are home to an abundance of bird life. It is a short walk to the lake and near to shops and transport.

I was really excited to move in, apart from being heartbroken that I had to leave the family Burmese cat behind. Chanti and I were devoted to each other, as she was to the whole family. Except we had a special bond due to C and G going overseas and Chanti and I really bonding while being alone together. I truly believe she healed me of some of the dreadful pain I felt after my mother’s death in mid 2014. She is an old cat and never jumped onto anyone’s lap, however the day I was leaving she came running down the hallway and leapt onto my tummy and snuggled close. It was harder than leaving my son, because I knew he had wanted his own place since he was 18, and now he was finally getting it.

I ordered my lounge furniture to be made in teal chenille which would take up to three months, and settled in as well as I could with everything else that had been delivered. G drove the removal truck and with C they moved my boxes that had been in storage since April 2013. I had not brought a lot with me from Sydney, mostly my quilts and my art and quilting books, unfinished quilts and my two favourite tea sets of mixed china. Bedlinen, duvets, blankets, towels, cushions and throws needed to be bought up here as well as dinner sets etc. I was basically starting again, I wanted to leave the near thirty years with my ex totally behind me.

My son stayed in Wallsend, his fiancé in Sydney came up weekends and they visited on Saturdays at first to help me get settled. The garden was neat but not really to my taste so I tidied it while I worked out what I was going to do with it. I found it hard at first to adjust to being alone after living with families and my own family for over forty years but I adjusted and enjoyed the time alone to read and watch DVDs and Netflix etc.

However all of 2015 I had been in and out of hospital with bowel obstructions due to a Parastomal Hernia. Luckily one Saturday in late August my son and his fiancé were there when I had a really bad one. Due to nearly dying and needing months to recover physically and psychologically from the surgery I did not return to my home until November. The garden was in a shocking state and there were so many deliveries from eBay and various stores as I ordered most of my household goods online. Luckily the Park staff once they found out I had nearly died opened up for me so the deliveries could go straight inside.

Eventually I had the place absolutely as I wanted it, a spare room for my son or friends to stay in, which they did. My dad visited with a nurse regularly for tea, weekly in fact. Meanwhile my son had a dreadful experience with a home invasion in his place, people were badly injured who got in the way of the assailants. He came to stay with me until he got up the courage to go back but we were both concerned for his safety. Then he broke up with his fiancé early 2016, Chanti the Burmese went back to Sydney with G and eventually C gave into my nagging and the detectives suggestions that he move out of Public Housing and in with me.

Easter Monday 2016 he moved in with the delightful Robinson movers who service Lake Macquarie. The owner had not realised it was Easter Monday so his lovely wife helped him. They did such a great job, very friendly and professional. When they finished here they took his furniture which would not fit and his excess boxes etc and put them into a Storage Facility for him. C was pleased to be in my bedroom as he had a double bed he wanted to eventually have in there. I moved into the spare room which had recently had the floor replaced and wooden laminate put down after a nasty episode of water leakage all over the carpet under the window. I also pulled up all the lino in the kitchen and bathroom and found a layer of stagnant water there. Once it was cleaned out though the floor was sound and no mould was found. I managed with the horrid old adhesive lino as I knew water could not get under that and damage the walls.

We really enjoyed being back together again, though it was an adjustment for both of us we always get on well and work as a team. Around the same time I got stuck into the garden, holding the left side of my tummy firmly as I did so. I cut back really hard the Lily Pily and had my handyman Alan remove some horrid old Azaleas. There were several good plants that I also cut back and I planted a few Buddleja Davidiis. Removed a lot of horrid cobbling which was not working as a path as it was covered by the Lily Pily. A lovely dad and his two girls came and dug them up for me and removed them. For free! Then the long experiment with what would work as a ground cover started. The ground was shocking, I loaded the soil with Blood and Bone regularly. Tried white ground cover magnolias, mass planted. They died. Then white daisies, also mass planted, all but one died. The most success I had was with ground cover nasturtiums, with sugar cane mulch to germinate them.

So after much rearranging and selling of furniture C and I have blended our things to create a cozy though tiny home. Having our own home has made me feel rooted to the community, helped me destress when things with my dad and his care home became so very difficult. Shutting the door, getting a cup of tea and putting my feet up in our home, because it is very much my son’s and mine now, is so therapeutic. After two years of turmoil and the torture for so many years before that, this is my haven, my peaceful place and I love inviting special friends into it. One regret I have is that I broke off contact with someone after I nearly died, that I did not trust that he would want to be my friend through this. However we have reconnected now and are very close. He is the one of the many voices, and I love him so much and trust him. We are so very good together. Sometimes timing is everything, as we both know so well.

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Much Loved and Safe

On This Day five years ago I had a really busy day in preparation for our move north. I decided to have my “After Suicide Attempt By Family Member Psychologist” session coffee beforehand so that I could get on with the many things I had yet to complete before our upcoming moving day.

Usually I sat in Westfield Bondi Junction food court with my face blotchy from crying through the whole session. I liked to try to get ahold of myself before getting the bus home. This time was the first time I did not cry through the whole session.  As a matter of fact I did not cry at all! I graduated, not in the usual way from a course but in that I completed all the things I needed to in my own mind.

I knew instinctively that we needed somewhere safe to stay, even temporarily, where we would be with people who loved us and knew us and wanted the best for us. Being in an unknown environment in the state my son and I were in would not help us heal, however we had to get away from the possibility of contact with D.

So straight after the session I boarded a bus to Maroubra to return the GPS monitoring device I had been given by Stay At Home Leaving Violence, an organisation that had supported us so freely and compassionately. J the Housing case worker was so happy to know where we were going however she counselled me against staying too long, she said I was in no state to be a carer, that I had to put myself first. She also reiterated her opinion that I would be very good at Advocacy work.

Five years later the Advocacy has become second nature, and about so much more than Domestic Violence. It is Dementia, Mesh, Ostomies and Women’s Surgical Issues. And I did stay longer, because though my need and my son’s need was great, my aged demented parent’s needs were so much greater. And one is gone now, and another in care, and both were, and are, much loved and safe.