A Difficult Journey

Yesterday was a long and emotional day: it began at 5.30 when I left home to go to my sister’s house to collect her, to drive onto our Mum’s house. There , we were seeing a potential caterer at church – the first time we had been in Mum’s ‘domain’ since she died -, signing some paperwork at the funeral director , making an appointment with a solicitor and finally meeting with the Minister to plan the services at the crematorium and then at church. So it was a full on day, packed with emotion and difficult conversations, and throughout it, I was ,once again, relieved to have my sister by my side. We were able to build each other up when we get upset as nobody understands what it was like to be a member of our family better than she does. After all of those meetings and that decision-making, we were wrung out. I dropped my sister back at home at 7 pm and drove on home myself, getting back just before 9 pm.

I usually listen to Radio 4 in the car and so I was sucked in by the programme ‘File on 4’ last night. It was called ‘On Who’s Authority’ and it was detailing families which contained adults with learning difficulties and was exposing the battles that they were having with Local Authorities in trying to get heard in Best Interests meetings for their vulnerable loved ones. I knew from the outset that it would be a tough listen, but I could not turn it over : amongst others, it featured a 50 year old man with autism and epilepsy who had lived with his Mum all of his life, until she became 70, she had admitted that she could no longer cope and he had moved to a care home. His brother became his Deputy and ought to have been consulted over any changes that were made to his care, but social care made decisions without any consultation : he was moved from his care home to a supported living flat, on Christmas Eve, as his care home was closing, with no transition and there was no furniture in the flat as it was not ready, and the brother was powerless to intervene. I was horrified as families were ignored and were shut out if they made any complaints, their access to their offspring was limited as a punishment for making a complaint and none of the Provisions of the Mental Capacity Act were being adhered to.

Clearly after the day of raw emotion that I had already had, this radio broadcast reduced me to tears very quickly, as I worked out that when I was 70, Joshua would be 35 and he had no brother to be his deputy to defend him . We had been busy developing a funeral that Mum would approve of and we are old and capable enough to pick up the pieces of our lives, once our grieving is finally over, but how will Joshua cope when we have gone? He won’t understand the concept of death, he will just see that we are no longer around for him. This mourning that we are going through, though painful, is a natural process of adjustment, and Joshua will not have the capacity to grieve. One of Mum’s instructions to me was that we had to write a will, to provide for Joshua’s future. It took us years to come to terms with, but two years ago we finally went to the solicitor and made our will and we set up a trust for Joshua, appointing trusted friends and family to put his needs first. He will be provided for financially , as our only heir, but last night I began to worry about his emotional and practical needs once we , his parents, can no longer take care of him. It sounded from the radio as though he may well need a deputy or ‘warrior Mum’, as the radio called them, on his side, so I will need to attend to that once we have survived Mum’s funeral.

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Back to Normal?

Today I am leaving home early to go to pick up my sister and together, we are heading back to Mum’s home town for another day of jobs to be done : we are meeting a potential caterer at the church this morning, so that they can view the kitchen to assess what they would bring with them. It will be the first time that we have been in ‘Mum’s church’ since she died so that will feel odd and we might even see some friends of Mum’s there, she used to go down there for coffee every weekday. But it will be helpful to confront the space before the funeral next week, as it will be hard enough next Thursday.

We have an appointment with the church minister this afternoon, but she will be coming to the house to see us. We will discuss the bones of the funeral service with her : the readings, the eulogies, the hymns etc. We know what we want to happen, but might need some help with the order and some advice on the length of the service perhaps. She announced the date and time at church on Sunday, so the congregation will all know by now. There was a music concert in church at the weekend, by an instrumental group that Mum was very fond of; we have heard from three people now that they dedicated their final piece of music – based upon the hymn ‘How Great thou Art’ – to Mum’s memory. I found that very moving, even though we did not attend to hear it for ourselves. Fortunately, the violinist from that group will be playing at the funeral, so that is a lovely link that Mum would have approved of.

While we are over, we will also call in at the funeral director to sign some paperwork and we will review old family photographs to use in the order of service. So this promises to be a full on, emotional day. But then, they all have been since Mum died even when we have been quietly at home, trying to relax as we are constantly being advised to do.

Joshua returned to school yesterday and I went to the office, trying to be ‘normal’ , when nothing feels the same any more. I was able to do quite a lot at work in the morning, but then I began to flag later, so I came home mid afternoon. I planned a brief nap before Joshua got back from school but that did not happen, with emails I chose to write and phone calls that I received. Having stayed dry-eyed and calm in the office, I was more emotional at home, so much so that I had tears in my eyes still when Joshua arrived home, so I turned on the smiles and loud, excited voice for his benefit and he responded happily in the way that I knew he would. There was no time to wallow once he was home: he wanted his boots and splints removing, I gave him his medication in a chocolate mousse, he told me that he wanted to watch ‘Robbie’ on DVD and then I got his tea on. On the plus side, I had hugs and kisses from him, but much less endearing was his door slamming and his bashing of the telephone on the  mirror in the hall, both to demand attention. Once he had eaten,he dragged me upstairs and into the bathroom, as he wanted an early bath, so we were both in our PJs by the time my husband got home from work.

Joshua was up and down stairs through the evening but he settled into bed around 9 pm , but he was back downstairs later as he had some seizure activity, as he was still gently fitting by the time he reached us. I took him back to bed and lay next to him to observe his seizures, even though he smacked me at first, I persisted and sang to him in the darkness. I fell asleep next to him, so I got my nap, just  7 hours later than I had planned, and when I awoke, Joshua was snoring next to me. Joshua helpfully takes the focus away from what I am feeling , as he needs such practical care. I was asked yesterday if Joshua would be going to his Granny’s funeral, and I replied quickly that of course he would : he loved his Granny and she adored him, so there is nowhere else that he should be. He is unlikely to conform during either service, but we will be surrounded by friends and family who either know him or who have heard Mum talk about him, so his outbursts  will be excused I am sure and he may even prove to be a useful diversion on the day.

Running Before walking

Yesterday morning I did something that I knew rationally that I was not really ready to do and it backfired badly on me: I was thinking about my eulogy for Mum and I remembered that I had written a blog on International Woman’s Day as to what I admired about Mum. So I traced it and re-read it and figured that I could adapt it for her funeral. Then I thought that I would check how Mum had reacted to it at the time, so, and here is my mistake, at 4 am , I opened up my folder of emails from Mum in March. I found the one that I wanted easily by the date and in her modest, calm way she had simply said that it was lovely but it had made her cry. But instead of stopping there, I began to read more of her emails . They were full of love but full of progress reports on her appointments with doctors and a commentary on the swelling in her legs and ankles. Now with hindsight, I realise how ill she was, but at the time we took it in our stride, taking our lead from Mum who never liked a big fuss. I began to weep uncontrollably and 4 am is a lonely time of day, with no real distractions from your own thoughts.

It was probably part of the grieving process that I needed to go through, but it took me by surprise and I could not stem the tears or the sadness. My best friend woke at 5 and I invited myself around for a cup of tea and a chat. She advised that we both had a bit more sleep, which was good advice, and so I went back to bed for an hour and then set off to her house at 6.30 am. We drank tea in her garden and talked , which was a perfect antidote as I needed to focus on something and someone else to bring me out of my gloom. I left an hour later, in a much happier place, and both boys were still asleep when I arrived home, none the wiser.

Thereafter, I had a lazy Sunday : a morning bath, put some washing on and went to Tesco with Joshua, which was both fun and productive. I made us lunch and then really needed a nap afterwards, to re-charge my batteries. I nodded off on the settee but was rudely awoken, after not very long, by Joshua and then by Ruby, both trying to sit on me. So I abandoned that siesta plan, and started to make spaghetti bolognaise. Joshua was clearly stir crazy by this time as he was banging doors all over the house and creating mayhem generally. So we took him to Donalds, which he always loves, for his end of holiday treat. He ate his chicken and chips while waving to all of the other customers. On the way home, we went for a brief walk on the empty beach to blow the cobwebs away. We all ran to the shore and Joshua enjoyed the freedom of running whichever way he wanted and he lay down in the sand a couple of times. The long sandy beach had restorative properties for us all and as all the holidaymakers had gone home, we had it virtually to ourselves. It was a perfect end to the day, another emotional day .

Time playing Tricks

Today is 2nd of June and I feel as though I missed May somehow, where did it go? Joshua’s half term school holiday has come and gone, yet I seem to have missed it. Mum has not been around for over a week now and yet it seems a lifetime ago that she died as the last ten days have been the worst of my life. Those 11 days with Joshua in special care, when we received his brain damage diagnosis, were tough days, but we had our new baby to see us through and I had my Mum by my side. The time we spent in hospital when Dad was dying were hard, but we had already lost him to dementia years earlier and once again, we had Mum by our sides.

She has been a constant in my life, through good and bad times : we always celebrated every family birthday together – I am so glad that she shared in Joshua’s 18th birthday celebrations in March – , she has stayed with us for the last few Christmases too and is always a perfect and helpful house -guest and we had a wonderful Mothers Day lunch out with my sister, mother in law, husband and Joshua and that was another happy day.

We have over a week to go before Mum’s funeral and over the past few days we have made huge progress to making her funeral into a celebration of her life well lived. My sister and I have organised things with the funeral director and we have sorted  out the venue for the refreshments after the church service. Yesterday I booked a violinist from a music group that Mum loved, to play as guests come into and leave the church and that will be really special. We began the process of choosing caterers but we have a very specific idea of what we are looking for, an event that Mum would enjoy and approve of so we need to get that choice right. My sister and I will meet the minister next week to discuss the service itself and we will start to pull the Order of Service together with some family photographs.

It has been helpful to have this focus on Mum’s funeral and to forget everything else that will need to be done eventually, but we are in no rush to deal with the house or Mum’s finances. I do worry that we will both fall off a cliff after the funeral, but I know on that day, we will be surrounded by love and support – as we have been since she died to be honest. I like to think that Mum’s spirit is still around supporting and comforting us, and giving us a gentle smack – like Joshua – when we begin to wallow too much in self pity. We can do this!

Family Planning

Losing Mum has made us think more about Dad too, about our loss, his death and his funeral. It feels more final this time as nobody needs the house anymore and when our father died, Mum handled everything and we simply supported her. We were a tight family unit who stayed by Dad’s hospital bed for almost 3 weeks as he was dying. This time, my sister and I did the weeks of hospital visiting and now we are the recipients of the kind sympathy cards and bouquets. My sister and I are the grown ups this time, we are in charge of funeral decision making, which feels more daunting. Our only concern right now, is to give Mum the funeral that she deserved, a real celebration of a life well-lived, everything else can wait.

We made good progress on the funeral arrangements this week : we have a date, venues and we have let mourners know. Mum was heavily involved in her local Methodist church, where she became responsible for room bookings, amongst other things. So as a tribute to her role there, we were keen to book a room in the church hall for  refreshments after the celebration service. It seems fitting and hopefully, as there is no travelling to be done, more mourners will be tempted to join us afterwards for a cup of tea and something to eat. The church became her social life and she went there everyday pretty much, so it should play a part in her send-off.

Her garden was another love and occupation of hers and the garden is looking beautiful at the moment. So we have extended a welcome to family to come back to the house afterwards, to have the opportunity to sit for a while in the peace of her garden. Since Mum was ill, she had organised a gardener to cut her grass and tidy up, as she was no longer able to manage it herself. On the day of her death,  when we went back to Mum’s house, we confirmed that we wanted him to continue to garden all summer; we could not allow her garden to become unkempt and uncared for, as that would be heartbreaking. We are also hoping that some of the flowers or foliage from her garden will be used to decorate the church and hall, to bring another piece of her to the service.

My sister and I share a clear vision of how we would like her funeral to go and we are laying plans in order for that to happen. As with last weekend however, we need our quiet weekends to restore our strength and to rest at our own family homes, ready to tackle more jobs together next week. So I was at home yesterday, and after what felt like a morning on the telephone, my husband and I took the dogs and Joshua for a walk in the park and then we had lunch in a cafe, which was the first half term activity that I have been able to do with Joshua, on the last day of his school holidays. It was restorative to just be us three together. The importance of family – our tight family unit and the wider extended family too – is brought into sharp focus in times like those we are living right now.

We are Underway

So, we survived our first busy day since Mum died and we achieved a great deal. We had three matters to attend to, to start the official ball rolling in acknowledging Mum’s death : to collect the medical certificate of death from the hospital, to register Mum’s death and to take the necessary paperwork to the Funeral Directors. They were all big , serious tasks and once again, we consider ourselves fortunate that we were able to do them together, as all of those venues would have felt more daunting alone.

We arrived at the hospital 30 minutes before the Bereavement Centre opened and we were both shocked by the physical reaction that we had to turning into the approach road to the hospital car park. At the same point precisely, our stomachs flipped and we felt sick : just knowing that we had arrived, only this time it was not to visit Mum on the ward. That nauseous feeling continued into the car park and when walking along the main corridor. We went into a cafe, one we had never used before, for a cup of tea and a toasted teacake to calm our nerves and to fill the time, and that did the trick. Collecting the paperwork was a fairly painless process in the end and the lady there helpfully advised us on the next stage of our journey to the Registrar.

As it was pouring with rain, we took a taxi to the Registry where we had been warned, without an appointment, we would be asked to simply wait our turn. So we settled down, in full view of reception, so that we would not be forgotten,  and we watched families come and go, some in pain to register a death and others delighting in registering the new life in their families. But it was only 20 minutes or so before we were called through and a very human, helpful registrar took our details and printed off the death certificates that we requested.

We were feeling as though we were on a roll then, so we walked 5 minutes, in the rain, to a branch of Mum’s bank to inform them.  There was a lot of information to take in at the bank and it took some time to untangle Mum’s varied accounts. We were reminded of Mum’s kindness as we saw a list of her standing orders and direct debits to cherished charities such as Wateraid, Great Ormond Street Hospital and Cerebra. We thanked the helpful lady but I felt rather woozy on leaving the bank, so we stopped for some lunch and a sit down, to recover ourselves as we had achieved all of that by lunchtime. Then we drove back to Mum’s hometown and confident in our resilience, we went straight to the funeral directors where some difficult decisions had to be made. The funeral date still has to be finalised, but we now know  that at least it will not be next week, so we have some time to pace ourselves.

On leaving there, I just wanted to go back to mum’s house, I did not want to see anyone else but I needed a cup of tea and a nap in Mum’s lounge. We needed time to assimilate all that we had been told and to congratulate each other on how brave and efficient we had been. We rested, took some phone calls, wandered in the garden and then did some chores :  I did some ironing and my sister hoovered up and did some dusting. We both knew, without saying it out loud, that Mum’s high standards had to be maintained, even in times of crisis.

We both drove back to our family homes last night, which felt very welcome but strange at the same time, after an intense 24 hours together. Joshua gave me three big bear hugs when I arrived home and dogs never fail to give me an enthusiastic welcome. It seemed that I had been away from home for ages, as I checked if the puppies had doubled in size, but then I reminded myself that it had only been 24 hours. It was reassuring in a way to find things at home, the same, when everything had shifted, irreversibly at Mum’s house. We are well on the journey now…..

The Business of being Busy

Ever since Mum died last week, everyone has been saying how busy we must be and I have to admit, it has made me slightly nervous, as we were not particularly busy after we initially rang round family and friends to break the sad news. But today we are collecting her death certificate, registering Mum’s death and then going to see the funeral director to begin proceedings, so today will be a busy , and emotional, day. My sister and I came to Mum’s house last night, to be together and to be able to have a full day on these tasks. It did not feel odd to me to come to her empty house, instead I found it comforting to be surrounded by Mum’s possessions how she left them 7 weeks ago when she left for hospital as everything is so familiar.

Mum was a very organised and efficient lady and so we were confident that her paperwork would be in order for us to find. So we went straight to her file named ‘Wills’ to find some of her funeral wishes – not as many as we had expected actually. We knew that she had been preparing for these days for the last 5 years, since our Dad’s death, as she has been de-cluttering too. Mum was always thinking of others and never wanted to be a burden to her two daughters, which of course, she never could be.

Once again I have thought how lucky I am to be here with my sister, as she is probably the only other person who knows exactly how I am feeling and exactly how much of a loss we are facing. We had a pleasant evening talking and opening the condolence cards that had been delivered here. I lit the fire that Mum had laid, as the house seemed cold when I arrived at first and I had brought a bouquet and candle from a kind friend, so the lounge looked cosy and welcoming  when my sister arrived.

I have talked before about the various hats that we wear in life : today I have taken my mother, wife and employee hats off, the only hats that I will be wearing today are those of sister and daughter.