Living Adjustments

Thankfully my weekend starts today, as I am off work on Fridays; it has felt like a long week, even though I have only been at work for three days. Yesterday was definitely my easiest day in the office so far, as I was able to focus and be more productive. But every Friday is an anniversary of Mum’s death , she died 4 weeks ago today. It feels as though we have been without mum for much longer than a month, what a month that has been. So when people kindly tell me that it is ” still early days” they are not wrong and I possibly need to learn to be kinder to myself and to be more patient. Every Friday is an anniversary, but I am conscious that we will have to face her 80th birthday in September without her there to celebrate with us, the first Christmas when she does not come up to stay with us and of course, our first Mothers day without our beloved Mum. But it is not just those big dates when we will feel our loss more acutely, it is whenever we want to tell or ask her something, on a daily basis. My sister has filled my Saturday morning  phone call window, which really helps to get me through the weekends, so far, but we also speak and message, throughout the week too.

When Mum first went into hospital, I set up a Whats App group for my Aunts, mum’s sisters, to be able to update them with the same news simply and quickly. That same group has been invaluable since Mum died, for mutual support and to detail funeral arrangements . But now we still use it to wish each other good night, to share our favourite photographs and to send virtual hugs to each other each day. I have warned them that they may be stuck with us forever now, as we cling to everything that reminds us of Mum and what better, than her own flesh and blood.

I was mesmerized by a television programme last night, documenting the work of the Ambulance service in the North West. It was fascinating to see the pressures that dispatchers and paramedics were under and the range of emergencies that they were dealing with.  But they were also taking patients to the two hospitals that Mum had stayed in recently and so it seemed more personal and I was eagerly looking out for her wards or medical staff that might also have attended to Mum.

There are reminders of Mum’s life and hospital stay, wherever I look and at the moment, I want to be reminded, I find comfort in those things, now that the sympathy cards and flowers have stopped arriving.

Mind Games

Even after a productive day, my mind played tricks with me which is why I have been up and awake since midnight. I awoke with a start and immediately checked the time then I cried out. In my dream if I did not wake up before a certain time, my sister would die and I had missed my deadline. How am I supposed to sleep after such a nightmare? My sub-conscious is clearly trying to work everything out while I am asleep.

I was surprised as my sister and I had been together all afternoon, at Mum’s house and had achieved a lot together and had managed to share some laughs too. We began by calling round all the utility suppliers to inform them of Mum’s death and to take over her direct debits, I took on gas,electricity and telephone , while my sister tackled water and direct mail. These are time consuming calls to make, although most large companies have Bereavement Teams, which I did not know about. After those calls , we thought we had earned some lunch out as we seem to be comfort eating our way through these post-funeral days. Then we braced ourselves to go to the funeral director to collect Mum’s ashes and then carried them home. Mum left her instructions of the places where she wanted to be scattered, she did not want a head stone, so we will of course do as she wanted and organise some trips to do the scattering in due course.

That was enough by the time we got back to Mum’s house, so we sat quietly in the lounge, with the cup of tea that we had earned.We have both found some peace being at Mum’s house, surrounded by her things, just how she left them. We are in no real rush to pack up Mum’s belongings and house, there is no hurry. In the meantime it is a calm, comforting and happy place where we can share memories of our childhood and of Mum, as she lived there for the last 41 years. This is a surreal period of adjustment and we are still in very early days, so we will just continue to take each day as it comes for now and keep reminding ourselves to behave and react like Mum would have done.

Bring me sunshine

I wear bright colours to make myself feel better and brighter than I actually feel, to cheer myself up from the outside in. It is for that reason that I will not be wearing traditional black to my Mum’s funeral this week. Mum did not specify in her funeral instructions whether she wanted a dress code, as a themed colour is becoming more common these days. So we have advised people to wear whatever they feel comfortable in. For me,  it is not a sign of disrespect, it is simply a use of colour to try to feel more of a celebration of Mum’s life. It looks as though it may well be a wet , dreary day on Thursday still and so we will need all the help we can to bring some sunshine into church.

Both our parents were passionate about their garden and it always looked immaculate. Mum managed to maintain her large garden herself, after Dad died, until this year when she was relieved to pay for a gardener. Mum always placed a vase of flowers in guest bedrooms, whenever you stayed overnight, it was one of things that I missed when I was staying there when she was in hospital, as it was her signature welcome and a really nice touch. We have asked that the ladies who prepare church flowers might be able to take some flowers or greenery from their garden, so that there is something of their paradise in church. We have also asked the caterer to have simple floral arrangements on each of the tables, again to bring colour and nature indoors.

I have always worn bright colours to try to cheer myself up from the outside : when anxious at work, perhaps, giving a presentation or attending a difficult meeting,  I will dress to give myself confidence.It can become a self-fulfilling prophecy, that I look bright and confident, so I start to feel it eventually. It can also be a useful decoy for other people, that they think that I am feeling more cheerful than I am, because of what they can see.

Granny bought Joshua a lot of smart clothes over the years and so he will be dressed in something that she bought him for Christmas or his birthday. Again, I will not be dressing Joshua head to foot in black, which I did do at his Grandpa’s funeral. He has many more significant items of clothing to wear to say goodbye to Granny in. She always loved to see him in the clothing that she had bought, to know that I, and he, liked it enough to wear. She was always sensible enough to buy from M&S, with gift receipts carefully attached, but we very rarely needed to return her gifts, as she always had such great taste. The only issues that we sometimes had were that, she would buy a size too small, disbelieving that he could really be as tall or grown up as he was. He was wearing small man sizes long before he was 18 and more recently, as he is filling out, he is a medium. She commented that Joshua was the same slight build and clothes size as his Grandpa, and in fact she donated some home-knitted jumpers that she had made for her husband and could not bear to part with at the charity shop with the rest of his clothes, as they were made with too much love. Joshua wears both arran-style jumpers with pride and they will be even more special now.

We want to feel comfortable and confident at  Mum’s funeral on Thursday, but beyond that , our choice of clothes really does not matter.

Reunited again

When I collected Joshua last night, at teatime, from respite, he leapt off the settee as soon as he saw me and shouted ” I like you!” and gave me a giant bear hug. He left me in no doubt at all that he was pleased to see me after more than 30 hours apart. The staff reported that he had slept well overnight, just getting up once, and that he had eaten there too, so all would seem to be progressing well. Our next step, more for me rather than for him I suspect, will be two nights away, but I am glad to be taking it step by step as he only had his first stays there in April, so we are not going too slowly.

Joshua was clearly tired, he almost nodded off in the car home and when he arrived back, he went straight through to his Den and snuggled up on the settee with The Show switched on. I made him a welcome tea which he ate greedily and then he had his bath, during which he repeated ” tired” and ” jamas”  so an early night was on the cards. It is tiring learning new routines and being with new people, I imagine for Joshua adapting to new respite, must be like starting a  new job, and we know how exhausting that is, as you do not totally relax, even though you can maintain a calm appearance for the outside world.

Joshua will only be having a three day week at school, as we will drive to Granny’s house from school on Wednesday, to prepare for the funeral the next day. It may only be when he reaches her house, and her smiling face is not there to greet him, that Joshua truly understands some of what has been going on. Even my mind can fool me from this distance that she is really still around, to be reached on the end of the telephone, so I am really not sure what Joshua can process.Because he deals with the here and now, what is in front of him, he is likely to accept that Granny is missing, even though she has lived in the same house all of his lifetime.

Joshua’s 18th year is full of more change than even I had expected, but I am so thankful that he had his loving Granny in his life for all of his childhood, nobody can take that away from him.Granny Love


Joshua knew that he was going off to respite yesterday morning, he watched me pack his familiar grey overnight bag. We came downstairs to fetch his medication and while I was counting tablets in the kitchen, he opened the back door, went out into the yard in his bare feet and opened my car door, He climbed into the passenger seat, whereupon he switched on the music system and played some U2 Greatest Hits to himself.  He seemed to be ready to go to me, apart from still being in his PJs, and he looked very pleased with himself when I peered in.

I drove him there for 10.30, after getting us both dressed,  and he was smiling as he went through the door. Instead of turning left into the lounge, he turned right and went straight into his allocated bedroom, as if to show me that he knew where he was and recalling his bedroom. He was happily playing a keyboard when I left him, he hardly gave me a backward glance. It was still sunny when I got home, so I immediately got on to cutting the grass as I knew the forecast was for it not to stay dry. In fact it started to drizzle as I was on the last three minutes of mowing, so I timed it just right.

I was then overcome with overwhelming tiredness and I dozed on and off in the snug for much of the wet afternoon, enjoying the luxury of not being woken by being sat upon or having a cold hand in my face. At 4 pm, my husband and I decided to move and we took the dogs for a walk in the park, had a late fish and chips lunch then went to the supermarket together. I was very content with how we had chosen to spend our  day free of Joshua, when my husband suggested that we go out for a drink! My initial reaction was to say no, but then the idea grew on me and we went out at 9.30 pm and I expected to be home and in my PJs an hour later. In fact we were out for two hours, until well after my normal bedtime. We met some friends and colleagues in the bar and they made us feel very welcome and so we stayed out longer than planned. We do not often go out for drinks, so it felt very grown up and thankfully nobody mentioned Mum, though I toasted her in my mind.

So we did not waste any of our Short Breaks hours and it sounded as though Joshua had fun too, when I phoned up at 8.30. He will have enjoyed mixing with new people and of course they took him to Donalds, for which they were thanked. He is there today until teatime too, so this will be his longest stay to date. This weekend was timely, to give me some space before the funeral, although I did not know it when I booked in this weekend. Mum shared in our relief that we had found and chosen a new respite provision and although she had not visited, she had read all about it and had seen photographs. She had told one of my Aunts all about it on one of her hospital visits. She was very interested in the choices that we made for Joshua and now we are going to have to visit and review his daycare options without her input. She would never tell me what to do, but she was a great listener and so often, you would resolve problems or  find solutions while talking things through with Mum. I will miss those calm, caring and considered telephone conversations that we had, when I always knew that she was on our side.

A Tough Act to Follow

I have never been a real fan or sender of sympathy cards, yet I have received so many that it is rather overwhelming. They are all sent with the best of intentions : some from friends of mine, who did not know Mum particularly but knew of her, through me and knew how important she was to me and therefore they appreciated the pain that I will be feeling. My favourite cards however are those that come from those who knew Mum and are able to share memories with us or to tell us what she meant to them. As  have said before, we knew we were loved , but we are now hearing more about what Mum used to say about us and many of the cards say how proud she was of her family.

Joshua received his first sympathy card yesterday, one just for him, and it made me cry as I read it to him: ” I am sure that you will miss your Granny very much. She adored you and was so proud of you! She talked about you so much and loved to tell us about your love of music!” They are beautiful words and although I already knew that, it was still comforting to hear them from elsewhere. She always showed a keen interest in Joshua and although she lived over 2 hours away, she wanted to share in his life, so she enjoyed coming to school Christmas concerts for instance and asked for a tour of Joshua’s previous respite provision, so that she could visualise where he was spending his time. His paintings and creations were proudly displayed on Mum’s kitchen wall.

All of the adjectives that are being used to describe our Mum, are words that I would love to think that people would use about me too , as they are all good values : kind, brave, smiling, interested in others and loyal. That is Mum’s legacy and she is certainly a tough act to follow. The minister asked us this week for Mum’s weaknesses as we were telling her how perfect she was; we thought for a while, then agreed that she was rather obsessive about her recycling and rubbish separation!  At her house, we were often told off for putting something plastic into the general waste rather than washing it and putting it in the recyclable bin. We agreed that to live for 79 years and to have that as your only fault , was pretty impressive and it made us smile. Even now we are trying to maintain her high standards : last week I was ironing her duvet cover, as Mum would do, even though I would never do that at home. In many walks of life, it is important that we do not let Mum down,so we are often asking ourselves : what would Mum do in this situation? If we use that as our moral compass, I am confident that we will not go far wrong.

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.