A Soft Touch

 

In mid 2013 I started knitting mum a blanket to go with the colours of her room in the carehome and to remind her of the sea. I started by knitting rectangles on 6.5mm needles with two strands of 8ply yarn. The yarn was all found in various hidden stashes in her home. Some bags of yarn date from over ten years before and were unopened.

You see Alzheimer’s slowly took all mum’s hobbies from her. She forgot how to knit. To sew. To garden. To write. She could still read simple short lists but marvelled at the writing on our calendars. Said it would be wonderful to be able to do that. 

In the mornings I used to take a cup of coffee out with a muesli bar onto one of the two balconies running the length of their house. There I would knit the rectangles undisturbed until dad got back from his morning constitutional. I was working on two blankets then. 

The next year my mum suddenly passed away and I had not been able to touch this until recently. However mum is free, her spirit released, her body freed of pain and her mind also.  So I am adapting these rectangles into a blanket mixing many shades together. I added Patons Inca to the mix which has wool and alpaca for warmth and provides a soft touch. It is being knitted on 10mm needles and as it adds up to 30ply I am knitting it in strips. So far in a few days I have almost completed the first strip.

I am so happy to be knitting again  My hands are not what they were as the joints have a lot of arthritis and there is Neuropathy too but knitting has been my passion since mum and I pulled down a jumper of hers and I knitted my first item, a jumper with lace cables and bobbles. I was fifteen. The bobbles were inside the lace pattern  Very complex. These days I am more into colour and texture than patterns. I am enjoying this blanket’s journey, who knows where it will end up?

 

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Greeted With Open Arms

A year ago today I was out very early in the morning in the garden deadheading my many buddleja, flowering Andean sage, nasturtium and hibiscus. It is the best time to do it as at other times the plants are always covered in fat bees and butterflies. I did not want to get stung and I have an ongoing conversation with the bees that they do not own the plants, I do!

By 10.30 I had showered and dressed carefully for my day ahead. The day was going to be a full one, firstly the dentist for an extraction of a very painful molar and later on in the afternoon a visit from a special friend. I easily caught the bus up to the dentist, had a lovely chat with the receptionist and was even able to give some requested advice to one of them about not having her scheduled surgery using gynaecological mesh. The dentist assistant was a lovely silver haired girl in her teens and the dentist was a fabulous female. Very gentle.

The extraction was difficult, involving curved roots that were immediately near the sinus cavity. I was warned if it perforated it would need surgical repair. However all was well and we all smiled with relief when it was over. I did have to be careful not to sneeze with my mouth shut for a few days though! As I bit down on some gauze I tentatively made my way over to the shopping centre to get some goodies for afternoon tea.

Then I walked home, not bad considering my Cervical Spinal Stenosis makes pressure on my neck …..difficult. Perhaps the dentist asking that the nurse hold my head made a difference. Once home I had a very milky cup of tea, an interesting taste through blood soaked gauze!

When I checked my messages my friend said his daughter was through sooner than he thought so they would be over early afternoon instead of late. I rang him and asked what time and he said they were in Belmont! And asked for directions! I replied I had no idea as I do not drive and isn’t that what Google Maps are for? In the background I could hear this delightful giggling coming from his daughter G and much chatter and fun going on between them.

So after I hung up I dashed to the bathroom and spat out the second gauze plug…no further bleeding so was very pleased. I whacked on some bright red lipstick and fluffed up my hair and made sure the bathroom was ready for guests. Luckily I always over prepare so the snacks were plated up. Fresh plump blueberries, Maltezers and some sort of biscuits, perhaps Tim Tams? And lots of Irish tea.

Almost as soon as I had poured milk into the jug of my lovely Maxwell and Williams afternoon tea setting I heard laughter, giggles and chatter. I made my way to the door, suddenly overcome with nerves. I need not have worried, I was greeted with open arms by J and introduced to his daughter, whom I hugged with less reserve. J chatting all the way inside and gladly accepting the offer of a cuppa.

This was a very special meeting, one delayed by many many years, almost a lifetime in fact. We had met by phone only when he helped me with my dad in 2014, which was the year mum passed away. Early the next year he retired and his kindness and his lovely voice was quite a loss to me, so after six months I contacted him and we became Facebook friends. This led to playing Words With Friends, maniacally at times, depending upon who had a free afternoon midweek. Matches often went on all afternoon. I liked to online chat as we played. He preferred to play then chat.

We lost touch late 2015 until late last year, it coincided with my getting off my walker and having correct diagnoses for several issues which had made me less mobile than I should be. I was full of joy at being in charge of my health again and looking forward to the possibilities life might have in store for me rather than a life limited by disability. It had made me rather reckless in my online communication with J and I felt quite overcome with embarrassment at some of the things I had got up to online.

I put my best Verger front on though and we had a lovely time, with me teasing him about his many accents. He speaks in many UK dialects! Chatting with G was wonderful, about fashion, her new job and her move down here recently to be near her family. I loved her freshness and innocence. We all three trooped out to see my infamous  buddlejas and the rest of the garden.

After a fun time involving me begging J not to make me laugh because of my extraction, accompanied by peels of laughter from G, it was sadly time for them to go. J hugged me goodbye, a protracted hug which I was mortified by as I did not have a bra on! G then answered a phone call and J came out of the car for more cuddles and said we would be talking online. To which I answered of course.

So I survived the first meeting, met my man of many voices, his gorgeous daughter, and survived my embarrassment. How good it is to be over 60. To have nothing to lose. To trust someone so deeply that anything is possible. Indeed to even meet someone where anything is possible is a rare thing. Over time since then we have committed ourselves to each other, in words and deeds. And to each other’s adult children and we love being involved in their lives.

 

 

A Good Death

I have just finished reading Kevin Toolis’ book “ My Father’s Wake.”  

His life as a child was not unlike mine, there was much to reflect on of my own childhood summer holidays in County Mayo, Eire in the late fifties, early sixties. We too were way out on The Wild Atlantic Way, on the blustery coast at Dooyork, Geesala. My grandparents raised four boys and five daughters. Out of them only one, uncle John, stayed behind to look after the farm.

Kevin’s book shows the emigration of so many from Eire. The villages left to literally fall down as a tribute to the people who once lived there. People migrated to America and England in his book, he did not talk about the ones who went to Canada or Australia, such as my uncle Michael and my parents.

His book resonated so strongly with me. The idea of a culture that welcomes death into their homes. Shows the young how not to be afraid of death and indeed, all ages. I had not had much to do with death until the last seven years when I lost my mother in law in 2012 and my own mother in 2014. Both were sudden deaths, with both living in Care Homes. Sue, my mother in law in the UK and my mum here in Newcastle, Australia.

On the morning of 29th July 2014 I was awoken by the Nurse Unit Manager with a request to call her ASAP. It was about 7am and I thought mum must have had a fall so was totally flabbergasted to be told bluntly that mum had gone that I even stupidly said “gone where?” M the NUM said she is dead Kate, and continued talking, I did not hear what she was saying as this awful sound came out of my mouth. I wailed. And wailed and wailed. I have never ever done it before or since. I realise now it was the shock, but it seemed to be something that just had  to come out. The NUM started crying quietly, she loved mum’s spunk, her defiance of anything not fun. In her last year living despite Alzheimer’s she had embraced life so much. I was so proud of her, so, delighted whenever I saw her achieve the near impossible.

Immediately I started to say that it was wonderful, that mum would not be a vegetable, trying to convince myself of that to sustain me through that awful day. My son came with me to the home to see my mum. She looked so tiny.  Her spirit was huge and obviously could not be contained within her body. I stroked her hand, sat with her and her first born grandson while so many of the staff who knew mum came to pay their respects. In its way it was a little like a wake, each person told us how sorry they were for our loss. Some cried and looked very distressed for us. They thought mum a lot of fun. Her death was totally unexpected. She could have had many happy years ahead of her, it was a shock for us all, or so a lot of us thought at the time. Now that the home has been sanctioned twice for not looking after their patients properly I am sure she should not have died like that. Alone. In her sleep. Flat on her back with one leg outstretched off the bed. The NUM had tucked it back in to make mum look presentable.

We were left alone for some time with mum to make our goodbyes, I gave her huge wet noisy kissses all over her face and told her she was the best mum in the whole world  and that I loved her. So much. I stroked her and wanted to get on the bed and cuddle her but I held myself together. How I wish I had done that but things needed to be done there and I had to inform family. Especially my elderly father. My son and I caught three buses to tell dad. I stayed with him for two weeks, neighbours came over and mum’s brothers. My brother came the next day and there was a mad rush for my aunt and uncle and my brother and dad to get to the funeral home to “view” mum before her cremation early the next day. There was to be no funeral and nobody to attend the cremation, all this I found out the day after mum died.

So unlike Sonny in the memoir, my mum passed quietly, with the people who were involved in her life in her last years around her. I was not able to bury her and felt a dreadful sense of bereavement, of lack of respect, lack of saying goodbye to my mum. Even after holding a small Service of Thanksgiving privately for her life I still woke from my sleep, crying, with her foremost in my thoughts.

Four years after she died my son and partner and I took her ashes and sprinkled them in Lake Macquarie. Or rather tossed them, it is very hard to get ashes out of the plastic containers. We watched as the lights reflected off the water at Croudace Bay, as her ashes streamed forth onto the lake. The lights caused her stream of ashes to sparkle. It was remarkable. My son who is a photographer took photos, as did my partner. I felt enormous grief but also relief, that her body was finally free, as her spirit had been when she was cremated. Mum had been in my food cupboard for four years, she had been a brilliant cook before she forgot how to do that so it was a good place for her to be. There she had been surrounded by my friends and dad visiting and lots of laughter. Perhaps she did have a Wake after all, after her ashes came home, to me.

 

 

 

 

I Never Want To Feel Like This Again

Today was the fourth anniversary of my mum’s death. It is always a very hard day for me. I was so unprepared for her death. So unprepared for her new life. I needed more time. And today time is all I had. And memories. And photos. And more time. Sharing photos and those memories to Facebook. My friends doing their best from a distance to make me feel better. I have the best friends. The best network. The absolute best son in the world. And a wonderful partner.

However my partner was unable to be with me today, even for a short time, as he had a previous commitment to a weekend birthday bash. A sleepover one filled with all sorts of people, interesting and average and quite a mix of ages. And some of his family.

Usually we communicate throughout the day fairly regularly. And we say good morning and goodnight by telephone, a prolonged goodnight, over three hours last Friday night. Perhaps I should be happy with the time we do have together, such as last weekend where we had a fabulous, romantic weekend away together.

But I am cursed with wanting more. I did not have enough time with my mum, I am conscious of time and how things can change in an instant. I want more. I want to meet all his kids, his grandkids, his friends. Have heard so much of them but they seem to be denied to me, for now anyway.

Earlier today I was interviewed by ABC Newcastle about my Hernia Mesh. I have been in hospital again this week and it was stressed to me that I should really come in with all my bowel obstructions. I hate it though as they seriously cannot get my veins and then there is the dreaded NG tube. So I treat myself at home, always ready to go to hospital quickly if the pain worsens or if I start vomiting. As it did in 2015. It is serious and not to be messed with.

The reporter was fantastic. I have met her before. We did this over the phone as she wants to get this report to go National ASAP. We had a good talk then she did the thing where she said she wanted to know how it really affected my life. So I told her. She is excellent in getting to the absolute heart of the subject.

And it is one of the reasons why this thing about time is so important to me. To grab life now, because I do not know if this will kill me one day. I really don’t. And before then I want to see all my friends and meet my lover’s family. And not feel like the other woman. Because that is how I have felt all weekend. As if I am someone who cannot meet most of  his family. Must not let his family know we are together. That his obligation to this female friend exceeds his obligation to me.

It might seem stupid to him but it is how I feel, and how most women in my position would feel I believe. I have given myself heart and soul to this man, and maybe that was wrong. Anyone who cannot be there or even find the time on such a day as this to let me know he is thinking of me, of my son, may not be worth my love. I have a lot of thinking to do and we need to talk. I never want to feel like this again. I need that to be very clear.

He Had Never Left Us

On This Day five years ago my mum went into her only time in respite. It had been a desperate time for my son and I. Still traumatised by what we had gone through in Sydney, trying to do the right thing by mum and without transport most of the week it was a nightmare trying to get things organised.

D the Public Guardian had taken on the sourcing of care homes and after her saying there were literally no permanent places available within Lake Macquarie City I told her Newcastle would be fine. Within a day or so she called to say Tinonee Gardens in Waratah, Newcastle had a respite bed coming up a few weeks later.

One of the home care aides had told us stories about being sworn at in many different languages at Tinonee Gardens and that she had enjoyed the patients there. So I had some background from a trusted person and it was getting desperate at home with mum walking down the steep hill, forgetting she could not get back up again because of her heart condition. Also her anxiety and sundowning was off the charts. She would antagonise dad on purpose at times and f we had not been there I could see she would be black and blue again, as my relatives had told me she was before dad’s stroke.

We simply had to get her to safety and give dad a break away from her. So we accepted the bed and I then started the preparations for her admittance. This was hard or me as there was so much paperwork. Since I left my emotionally abusive husband earlier that year I had been so traumatised that I had trouble with paperwork and phone calls. Which made this very difficult.

I had to phone mum’s GP and get paperwork from him. Which was no easy task as he was never available to do it. In the end the day before mum was to be admitted I went into the surgery and made such a fuss that the office manager immediately found a GP who would do it for me. I had been very forceful about mum losing the bed and it would be their fault if so.

Then I popped next door to the wonderful Swansea Amcal Pharmacy. They of course were well prepared. The pharmacist and all the girls wished mum well and reassured me that everything would be okay. They delivered my parent’s medication to them weekly and knew how isolated my parent’s home was. Nestled against the bush, with no transport, and tri level. It was beyond unsuitable for my stroke damaged dad and demented mum.

I had to go out several times to get mum clothing as she barely had anything to wear when I moved in. With the help of Vinnies I managed to prepare her enough for her two weeks in Respite. Luckily G was up for several days so we were able to be driven to Swansea to shop and do all these things.

Dad kept saying something would go wrong and mum would not be able to go and sure enough, on the morning mum had to be there I heard a clatter in the garage. I waited a few minutes but heard nothing so continued to gather everything together into a bag that I had hidden in the laundry so that mum would not be alerted to anything.

As I came back into the kitchen dad came through the garage door into the family room. He was holding his arm up in the air and crying in a strange way. Almost hyperventilating. I then saw blood pouring down his arm. As I went towards him I grabbed some clean tea towels and used them to staunch the blood flow.

Dad was crying so hard I could barely understand him but I worked out that he was saying that mum would not be able to go now. He was shuddering with shock. I managed to get the blood to almost stop by holding his arm up and applying pressure. Then I had a look. He had shredded a piece of skin down his arm like cheese off a grater. About a centimetre deep and just hanging off his arm. The whole way down his forearm. When he saw it he started shaking again. I assured him it would be all right and wrapped his arm again and asked him to hold it while I went to get Helen who was showering mum.

She had just got mum out of the shower and we got her dressed together and then Helen came back to help me with dad. She came through and asked him what he had done now. I had found bandages and gauze swabs and spray on antiseptic in my mum’s amazing FirstAid drawer and had them on the counter.

Between us we looked after both of my parents as we filled a bowl with water and I swabbed dad’s arm to see what needed to be done. I had found some small scissors in that drawer and had put them in boiling water and then Dettol. I then cut the strip of skin off and we had a good look. It was going to be tricky to bandage but I knew elderly people’s skin was very fragile and could tear easily so I felt confident we could treat it ourselves.

The main thing was to calm him so I made him sweet tea and mum a coffee. Then we applied all the products. Starting with spray on antiseptic and gauze and finally the bandage. By the time we had finished he was just shuddering. I hugged him and said it would be fine. We would get mum there. He started crying again.

Eventually I asked him how he had hurt himself and apparently he had put his bad foot on a chair to do up his shoelaces and had fallen over. Slicing his arm on the printer stand.

I was speechless but managed to keep a calm demeanour. Dad had only been using velcro shoes since his stroke. Whatever made him go back to ones requiring two hands? He only had one functional one. I went to get his good lace up shoes and put them on him and laced them up.

While all this was going on Tony the owner of the hire car business had turned up to take us to Tinonee Gardens. It was a thirty minute drive and we needed to be there around lunchtime. So as soon as dad was calm and mum distracted I gave Tony mum’s bag to hide in the boot and then I told mum we were going out. She grabbed her handbag, very excited.

Helen left just before us and we locked up, then started on our first journey to the facility. It was a pleasant trip, mum chatting to me and not expecting a response due to her deafness. When she was not talking I encouraged dad to talk to Tony who was experienced in these journeys. It was very stressful and non stop for me, keeping everyone on an even keel. Dad was fine by then, hard to believe the state he had been in a few hours earlier.

We arrived at Tinonee and told Tony we would call him when we were ready to go home. Mum looked suspiciously at the office reception but was okay when the RN Laiju arrived to take us to Daffodil, the building where mum was going to spend respite.

By then mum was fractious, angry and suspicious. She kicked dad a few times as we sat waiting on a settee near the dining room where residents were sitting waiting for their lunch. Eventually the NUM Michelle arrived and she knelt on the floor and took notes on mum’s medical needs. By the time mum had her blood pressure taken she was well aware something was going on.

They then showed us the room off the dining room which was especially for Respite. It was near the nurses station which was reassuring. We took mums bags in there and I put them on the bed. She took them off the bed and kicked them with all her might to the other side of the room. And flounced across to dad and told him to get her out of there. Now.

When he just cried she kicked him. Then she kicked the bags. And threw them. Never seen her like it. My gentle mum. She then said in a quiet deadly voice I have never heard before.

“Tom, you take me home now. Tom. Tom. I am telling you to take me home now or I am going to scream and scream.” Dad just cried.

I took her out of the room to the settee. But she kept going back in and saying similar things. No swearing. Very ladylike. But with the deadliest undertone.

Dad came out and shouted, his way of communication, that he was going to have his prostate fixed and she had to be here while he was in hospital. Mum had no clue what he was saying due to her deafness and just thought her was angry with her.

Michelle came and said mum could sit down at the table for lunch, we could go then. I settled her, dad kept crying which really was not helping things. Then I said dad we are going to have to go. We said goodbye and she started to wail. And wail.

Laiju and another nurse came and got mum and walked her away from the table, half dragging her as she cried out to us.

“Do not leave me here. No. No. I am not staying here without my parents. Mummy. Daddy do not leave me here.”

Absolutely heart wrenching to watch her being semi carried around the corner away from us. We exited the secure door and made our way out of the second secure door. Dad crying all the way. Me phoning Tony. By the time we walked out to the front he was there. He had never left us, on this, one of the worst days of my life. Thus far.

 

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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.

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.