A Death in the Family, a journey through grief and finding a unique way to celebrate a long life.

Dec 20th 2021. This week my Mum died. She had just turned 92 and had lived with us here at Millstream for the last 34 years. There are two reasons I’m writing this blog, firstly to share the important things we have learnt about strokes, hospital process, and planning for a funeral, many people who have talked to me over the last few days have said ‘they didn’t know what they didn’t know’ about dying and afterwards. Secondly, writing is my way to process and honour my own experiences.

I guess when Mum first came here we had no idea she would be here forever, and despite our ups & downs we have got along pretty well. When she first came here at 58, it was to make a break from an unhappy marriage, her second, and she arrived in a fragile state saying she just wanted to live a quiet life in a caravan. Within the week we had found her the caravan she wanted and decided where to put it in the garden.

Over the years her little home expanded with a bedroom and porch, greenhouse and storage shed, and a beautiful garden surrounding the whole place. Mum had simple needs and was very content pottering in her garden, feeding her birds and sewing like a demon, most recently making re-useable bags from sheets and linens gleaned from the local op shops, she and I also worked together sewing masks..

Born in 1929, she was evacuated from London for some time during the war, then at 14 she left school and worked in a laundry, ironing uniforms for the forces, long hours and heavy work. Her work ethic never waned and she would complain bitterly if she was tired and needed a nap in the afternoon, seeing it as being lazy.

Just over 2 weeks ago Mum had a stroke, and we found her just a few minutes later lying in her garden, barely conscious. Myself and Rauna, our ‘Bonus Daughter’ (Giles’ partner) were at home, we’d been having a tidy up at Mum’s place. The ambulance was called, as I sat holding Mum in the garden, it started to rain, it was quite surreal, sitting there, holding up an umbrella, water dripping around us, and down my back, waiting for what seemed an age for help to arrive. The new covid restrictions meant that I couldn’t go into the hospital with her. She stayed in the A&E department until late the next day, and no-one could visit until she was put in a ward. The complication of this was that no-one at the hospital had any idea what state she had been in before the stroke, and at that time she had trouble speaking clearly and was confused, (not surprisingly). I had several long conversations with different Doctors, covering the same ground of what was Mum’s normal state. In retrospect it seems all this information was recorded first time round, but the systems for communicating information seem stretched, and not always ideal.

Eventually Mum  was settled in the stroke ward and my sister, Viv and I got to see her. In the ward we could visit one at a time and only once a day, we were so grateful that we weren’t in lockdown, when Mum would have been on her own. To aid communication we wrote a sign to go by her bed so that we didn’t need to repeat info, and that if we weren’t around staff would still have an idea of her needs. Several of the staff commented that it was a great idea and they’d like to use it. We also put a collage of photos of Mum with us and grandchildren just to say that she wasn’t always in the state she now found herself in.

It was hard to understand what she was saying, but the essence of Mum was very much still there, a bit cheeky and wanting to know everything that was going on in the ward. Two added effects of the stroke were that she couldn’t swallow properly and needed thickened drinks, which she thought were disgusting, along with the pureed food, and if we coaxed her to eat or drink, she’d say “you eat it then”. More alarming  was her breathing. She would breathe normally for a minute or so then stop for as long again. The only indication that she was still alive was that we could see her pulse beating steadily. This had happened while I sat with her in the garden, waiting for the ambulance, and each time she stopped I thought she had died, in many ways it would have been her perfect place to die, in her beloved garden with the Tuis in the flax bush and a sense of peace. In the hospital we got used to her breathing and would just stop what we were doing or saying and wait for her to start up again.

The third day was her birthday, cards and greetings from her Grandchildren and family, a few presents but she could barely register them, she enjoyed having the cards read, she always treasured cards, especially home made ones, and she asked a few times what was wrong with her, and where she was.

Viv, Geoff and I often had the exact same idea at the same time and we moved through decision making,  and processing what was going on together, we felt like a good strong unit. I’d woken up the day before Mum’s stroke and thought that we should decorate her casket soon, when I mentioned it to Viv a few days later, she had had exactly the same thought. Mum had bought a kitset casket,(that is a rectangular box, rather than a coffin which is shaped) maybe 18 months ago, I think she got it on Trade Me from a place in Feilding for about $400. She had chosen a paint colour ( Resene Paints told me they supply the local coffin club with paints, and were not surprised by my query.) and had spent time with Rauna collecting pictures from gardening magazines to decorate it. We had never had the heart to get it out and decorate it before now. Mum was very proud of her Funeral Fund, which she had been adding to over the years. She had $4,000 put aside, and of that we still have $1,000 left, after all expenses, which we will decide what to do with later on, when things are a bit more settled. We didn’t set out to save money, but the choices we made to be true to Mum were simple and home made, which felt perfect, and we are sure she’d appreciate that.

Day 5 So on a sunny Saturday morning we set up in the garden and painted the flat pieces then collaged many pictures on to it. All Mum’s favourite things, plants, birds and nature, it looked beautiful and we arranged the colours like the chakras, starting with red at her feet up to purple at her head. We could tick it off of Mum’s ‘to do’ list finally.

There was a lovely bedspread with wildflowers and poppies on it, which we decided to line it with when the time came. I looked online for how to do the lining but it all looked a bit flashy, lots of silk and pleats. In the end Tim, from Tim Hutchins Funeral Home and his team put in the lining and made a cover to go over Mum’s lower half, it was perfect.

Part of the health system is that we needed to look for  permanent care for Mum, at hospital level, if she survived. It was a confusing time for us as it didn’t seem that Mum would recover but on the other hand she might go on in a kind of half life for an unknown time. It was distressing to think of her, dependent on others for her care and unable to communicate clearly. There was no way our set up at home could manage her care without major alterations, and even then the prospect seemed hugely daunting.

We looked at a number of options, looking for a small scale set up, which looked homely and wasn’t too slick. The one we liked best had colourful images of the rooms, and even a visiting dog. Sadly we thought if Mum had been in good shape she would have loved it, outings to have fish and chips at the beach, sing alongs and film nights. Many retirement villages have hospital care set ups, but these are mostly used by residents in the village, so most local places had no vacancies. The Social Worker at the hospital gave us a list of options , which had vacancies at the level of care Mum would need. Apparently there is a Government subsidy for folk who don’t have much in the way of savings, and Mum would have been able to pay the rest from her pension. In the end we met with the manager of our chosen option, she looked at Mum and suggested we wait a few days before moving forward. I think it was obvious to her if not to us that Mum was dying.

We were lucky to have a couple of friends in the Health sector, who I talked things over with and we decided that the way forward was to ask for minimal intervention. To keep Mum pain-free and calm, and let nature take it’s course, in the words of her Doctor “Gently, gently’ it was a huge relief to be on the same page and that we had a way forward. It was a real conflict to acknowledge that was where we were headed and make that call, even though we knew it was for the best outcome for Mum. The other valuable suggestion was that we get a number of someone who we could contact if need be, and would be our liason with the hospital staff. This was very useful and reassuring that we could make contact if and when we needed to.

One issue we avoided, but could have been tricky was that we were asked if Mum had Enduring Power of Attorney. which she did not. In effect if she had gone into care and been unable to make decisions needed for managing her finances and care, we would have had to apply to get enduring power of attorney through the courts, and probably it would have been a slow process. Geoff and I have named Giles as our POA, as our solicitor succinctly put it “in case we go gaga” It’s simple to add in as part of setting up a will or revising one, and a good idea to do in advance, and especially so for our parents.

I found it useful to keep a bag packed with things I might need, ready for unexpected trips to the hospital, as well as a mask, glasses, food supplies, warm jersey, phone etc I kept a notebook there too. This was really handy for recording names of staff I talked to & what was said, so I could report back to Viv. I also wrote any questions or ideas in there too such as things to take in for Mum. I took in a piece of her favourite dragonfly curtain one day, another day a bunch of fresh herbs to remind her of home.

When we had the group meeting at the hospital Mum was asking for a Pimms, the Doctor said it would be ok to bring her some, so the next day I made a Pimms up with all the trimmings, packed in a coffee cup tucked in my bag. I was a bit nervous that I would get into trouble. When a nurse came into to see Mum, she said, “oh, it says on her notes that she is allowed Pimms!” So I produced the one in my bag, and dipped one of the sponges on a stick in it for Mum to suck. It was obviously approved of as she had about six helpings, probably a couple of teaspoons worth. If I’d waited until the next day I don’t think she would have taken it.

  Each day she got a bit less, less words, less eyes open, less eating or drinking. Eventually she was put into a single room, Viv and I would take turns to visit, Geoff often was our driver, and he would go off into town to fill in a few hours. The room was peaceful, with a big window and a fan to keep Mum cool. We took in a CD player and played some of her favourite tunes, including  Nat King Cole, Albatross by Fleetwood Mac, and some of our gentle music for settling her down. It mostly seemed like Mum was in a gentle dream, surfacing now and then to squeeze a hand or tap her foot to the music or raise her face to enjoy a cool flannel, she looked hardly recognizable with her false teeth out, and breathing with her mouth open all the time..

Day 12. On Saturday morning there was a call from the hospital to come quickly, Mum was going. Viv, Geoff and I dropped everything and rushed in, a 20 minute drive to Hastings. Thankfully we were all allowed in now, and we arrived  thinking we had been too late, only to be reminded that Mum’s breathing was erratic and she was not ready to go anywhere yet. The hours in that tiny room passed quickly as we took turns to sit by her, hold her hand, cool her down and talk to her. Geoff made two trips out for food supplies to keep us going, and we settled in. Towards evening Mum got restless, she would try to put her arms up in the air, and one leg would escape the bed, we joked she was practicing her Tai chi, but she became more distressed so was given extra sedation and pain relief. She had a permanent driver into her tummy and this gave her regular doses of meds, which then were topped up if needed into a line in her arm. Next day the extra doses she’d been given the day before were added into her driver to keep her comfortable.  One of the staff said it was very common for people who were dying to reach out like that, and she thought they could see loved ones on the other side and were reaching out to them. Who knows if this is so, but we liked the idea of people waiting to welcome Mum.

After 18 hours at the hospital we were exhausted and relieved when a nurse told us to go home, the down side of that was that as Mum was not dying right then, we had to revert to the one person at a time once a day system. This was distressing as we had found it so much easier to share the care and support each other. Fortunately this was revised by the Palliative Care Manager and we were allowed to go in twos or threes. Viv and Geoff went back in later in the day, but I couldn’t go, I felt completely wiped out and had my usual sore throat that tells me when I need to rest up.

Monday: I got spend a few hours with Mum, giving her a hand massage and playing quiet music, It felt like a gentle loving time, and very special for me. The song I played and sang to her was called “Let your Heart be Known’ by Steve Gold, an acoustic piece, it’s such a beautiful song and I play it now to connect in with Mum .

Viv’s grown up children got to go in to say goodbye to their Gran which was very special, and Giles and Rauna went to see her one last time. She seemed to be much the same as before, when we asked how long this could go on for, no-one could say, days, weeks maybe? That was a very daunting prospect both for Mum and us.

Tuesday morning: an early call from Viv to say that Mum had died peacefully about six oclock. Mixed feelings of relief and sadness, and some trepidation of what needed doing next. At the hospital all three of us were allowed in, and we sat with Mum for an hour or so while the death certificate and another form allowing for cremation were compiled. Geoff got hold of Tim the funeral director, who he had been in contact with over a few days and it was arranged that he would pick her up from the hospital morgue. Because of the covid restrictions he could not pick her up from the ward. Two nurses came in to wash Mum and put her in a clean nightie. We left and went to get breakfast and have some time walking in Cornwall Park while we filled in time before going to the funeral home.

At 11am, about two hours later, we went to Tim’s and after filling out more forms, Viv and I followed Tim into a private room where Mum was on a trolley. We wanted to help dress Mum, so with Tim’s guidance we managed to do so. It wasn’t so difficult or upsetting as I expected, in a way a continuance of the care we had been giving Mum. She looked very smart in her best red dress, and Tim and Blane even managed to give her the “Judy Dench” hairdo she wanted.

We had re-arranged our spare bedroom to accommodate Mum and a mattress either side, plus seating on the spare beds. We set up some of Mum’s favourite photos and ornaments and some candles. It felt like a very warm and peaceful space to bring her home to. Since she had not wished to be embalmed, and we felt comfortable not to keep her too long, we decided to just have her at home for 24 hours. We had a couple of text/email groups we’d been keeping in touch with and let people know they could come and say farewell.

It was a magic time, Mum looked very regal, and her casket was lovely. Many friends and family visited, there were tears and laughter, stories told and retold, other people shared their experiences of parents dying, some good, some distressing. A sense of shared life milestones, shared fears, shared love, it felt just right. Our friend Gine came and sang some beautiful songs, Mum would have loved that. Food was shared, and eaten at strange times, tequila was drunk, (Mum’s favourite tipple) tea and cake, cherries, meals cooked for us. Feelings of being looked after and blessed.

There was a brief moment of confusion, basically because we hadn’t read Tim’s invoice, which stated a private ceremony at Millstream. We were expecting to go to the crematorium for some kind of farewell, but had made no plans what to do there. When Tim explained the dilemma, it was a much better option to celebrate Mum and send her off from here. So we gathered together and people spoke or read out a poem or quote, it felt so much better and personal to be at home. One song Mum loved to do as a party piece was The Old Sow, we played a version by John Williamson, and it had us in stitches.

When the time came, Mum’s lid was put on and we carried her out to the car, with a waiata and a haka to see her on her way.

We waved her off down the drive, since we could not go any further with her. At 2pm the time we knew she would be cremated, we managed to sing a reasonable version of the Gypsy Rover, (not all the verses) and we drank Mum’s health and wished her a safe journey until we meet again.

Now it is over a week later and the reality that Mum has gone is still elusive. The caravan and garden she has lived in for so long, feels so much her space and we can imagine that she could be out shopping. I think it will take us all a good while not to look out for her when we walk past, not to think to take over tasty tidbits, or any one of many small acts that connected us. I feel sure that she is catching up with many friends and family who have already died, we joke that she’ll be enquiring about the state of the sewing facilities and is there a greenhouse? Where ever she is now I feel sure that her strong and generous spirit will be happily engaged in the next part of her adventures.

We send her our love and blessings.