If you have read my blog or visited my attention to care group on facebook then you will have heard me talk about Grumpy (my Dad). Grumpy died from Alzheimer’s 3rd April 2019 it was a short journey for us from diagnosis to Grumpy dying. Grumpy and my mother had both made arrangements to have their bodies donated to science rather then a large funeral. They had both signed up for donation and we were all informed of this by them both. I was sceptical I have to admit, I wasn’t sure how I felt about it but now I can tell you I could not be prouder or more amazed at the process.
Mum and I spent the 4th APRIL phoning to see if the local body repository could take dad, do remember it’s not as easy as signing a bit of paper. Once the person has died you need to check which university hospital has room (you are normally signed up to your local one) or check if the have restrictions (because some will not take people of a certain size or if the died of an infectious disease). Mum called all around the country and eventually Nottingham university hospital (The National Repository Centre, based at City Hospital) agreed to take Grumpy. They organised the transport (there was a cost for us) and then took him on his journey to help within medical research. We had been informed that he could be with them for 2 years and so we were prepared for the wait but we had been reassured that we would be invited to a cremation ceremony.
We decided to do a little get together for family and friends to remember Grumpy which was lovely. However, I think there was still an element of a feeling things have not been completed and I suppose there was an element of when may they call to say they are doing the cremation ceremony. Not that I am saying this is a bad thing but I think you have to be prepared to feel that regarding a loved one and not to hide that feeling (which I believe we did).
After having Grumpy for 5 months mum got the call to say they are ready to have the ceremony and invited us to attend (people had mentioned it would not be personal or that there would be more then one family in the same ceremony). Sadly not everyone could attend but some of us could and I am very grateful that I was able to be there. We had the cremation on 3rd September 2019 at 9:30 at Gedling Crematorium it was the most beautiful setting.
We arrived as Grumpy was been taken in and we were able to give the sunflowers and roses we had prepared with all our names on to be with him and my sister Joanna wrote him a note which the lovely funeral director placed on the coffin. It was very emotional but I can honestly say it was so personal, kind, thought provoking and comforting service I have ever been to. There was not an overly formal feeling Bernard the funeral director informed us that him and his team have been the ones driving Grumpy around to each of the hospitals. He reminded us of what a help grumpy will have been to mankind for selflessly allowing scientific research and young doctors learn from his death. We were able to choose the songs that played as we walked in and while we sat in the room and as we walked out. We were allowed time to go to the coffin and place our hands and say both hello and some of us said our goodbyes. Bernard did a beautiful ceremony and I was able to get up and do a speech about Grumpy. I have to say Nottinghamshire funeral services did us proud. I can not thank them
It was honestly beautiful and I will now be looking into this process myself. I am thankful that we have been lucky enough to have this moment and even though we still have one final trip with Grumpy to the Angel of The North it was a much needed time.
The point to this blog is to just say have a look at donating if you want, I have checked out the site and there is so much that they tell you so you know what will happen. I am so proud for what this service has done and as a family we thank you. We are grateful for what Grumpy stands for.
As I said the other day ‘grumpy was a giant of a man’ he was our grumpy and we will miss him’. We know he is waiting somewhere and we know he is telling us ‘before you come here you must have squeezed every ounce of laughter and joy from your life’.
We will aim to do just that.
Loss is such a unique experience for each person.
Sometimes we hear the news and immediately scream with sadness. Sometimes we start moving at hyper speed and make all the calls to inform people. Sometimes we are at a standstill, with no actually understanding what has just been relayed to us.
It’s unique. Unique to every person.
One thing I know, is that no-one can tell you how to feel or how you should be feeling. They can’t tell you to stop feeling or feel more. It is something that must happen when and as it wants. It must be organic.
Sometimes, you might feel the need to put on a façade. Sometimes you may hold back those feelings, simply because you don’t have the capacity to deal with them. Sometimes, loss brings anger – and that anger may have to be withheld.
Loss has a way of placing you in a state of turmoil, a turmoil that flits from one emotion to another within seconds. All I know is you can’t fully control it. It doesn’t run on a timeline, it doesn’t know how to fit into your life and come at the best time – purely because, well, there is no good time for it. That’s why, some people struggle more, some struggle less and some pretend. Many people are already dealing with struggles of their own and when loss appears, it makes it hard to see the wood for the trees.
I have recently been through a loss. Grumpy (my father) who I have spoken about before died 3rd April 2019. He had Alzheimer’s and in truth, I feel we commenced grieving from the day of his diagnosis.
I did not get back home to him in time. Suffice to say, this has affected me immensely. I feel regret.
I wish I could have seen his face one more time, I wanted to hold his hand one more time, I wanted to feel his love one more time. This is a comfort I wanted to give myself. A comfort I think I deserved. It’s not selfish to want this for myself; it is normal. I wanted to say, “bye dad”, “see you later” or just plain old “love you dad”.
I will get through this and I will continue to live the best life I can, but it may be be a little tarnished for a while. Perhaps forever, but that’s okay because at least I am feeling.
What I take from the loss of Grumpy is that in death, there is life. Great good can come from intense sadness and loss and this is exactly what I feel with the loss of my father. Grumpy chose to have his body donated to medical science and my mother tirelessly worked to ensure he got his wish. He could be the bridge between life and death for future generations. He could help scientists find more information about Alzheimer’s to lead them that step close to a cure. Ultimately,I wish he was still here, but only here at his best, at his strongest and at his happiest. I wish he was here to tell us we will be okay, even though I already know we will be. His comfort and huge presence will be missed more than words can explain. This has emphasised a fact I always knew to be true – making memories is the most important thing. So, please, everyone, make them and cherish them. Don’t waste a moment. Memories remain and pain disperses.
Don’t worry about how you feel. Just feel what you feel.
Decided that sometimes knowledge of something can make you know too much.
I am sure this sounds like I have possibly lost the plot but I have worked in care for 30 years. Supporting people to develop skills, keep skills and to be cared for through the end of life process.
Some people would think knowing information or knowing what’s to come is a good thing. However, not always as at the moment it isn’t. Knowing the progression within Dementia and knowing the end of life process means, I know what my dad is possibly going to go through. As a trainer in social care I stand each month and teach about dementia awareness which has an impact on me as I am actually talking about what might happen to my dad, over and over (I love my job but it can be hard when going through something).
Knowledge and experience
As my dad progresses through the dementia journey I struggle to get those images out of my head of people I have met, cared for through this incredibly harsh disease. I see the people screaming as they are being cared for and shouting for mum because they have forgot the reality they are in. I see the progress of having to assist the person to eat with a puréed diet because there swallow has been effected. I also see the families broken and frightened of who they now, don’t really know. I see the daughter visiting their mother but she no longer remembers being a mother. I have also been lucky enough to be with people at their end of life and know what it can be like sometimes I wish I did know as I am sure others wish they didn’t know.
My reality at the moment is wishing I didn’t know wishing I was being told by a professional at each stage rather already knowing quite a lot all at once so I know the possible end journey.
Just a family member
We forget that people who work in care or in the caring profession whether a doctor, nurse or care worker that they will have loved ones who may be suffering from a condition. But just because they have the knowledge they are not a doctor, nurse or carer when we are talking about a family member they are just a daughter, son, husband, mother etc. They too will be on the journey and even though they can’t forget what they have learnt or seen they will wish they could for a day so they can be just like everyone else and be the daughter, son etc.
Dementia is a journey for all. Just remember to enjoy the good days and role with the punches on the not so good days. Do what you can and just love each other.
Take care all.
For the last few days I have been ‘tweeting’ I am new to this and just wanted to be more pro-active. I have had a good time just commenting and retweeting tweets until today. I know social media is known as a bit of a harsh place to be at times. However, being part of the care industry and training both nurses and carers I think it is important to be fair when posting about social care and the NHS. I made a comment that it is not only social care that has the poor care but so does the NHS and the response from a particular person was rather harsh. Telling me that NHS is superior and telling me ALL social care providers are rotten (not word for word but that the tone of the comments).
I am not disrespecting the NHS I am grateful for it but when will people understand bad care happens in the NHS to. We as a family have witness this on a number of occasions (not just once). It seems everyone is quick to speak negatively about social care both home care and care homes. Don’t get me wrong I have been honest about our experience with home care also but lets ensure we are not constantly thinking the NHS is superior to everything. It has it’s faults as does social care.
Social care is so devalued and until we value it more we will always have people saying all social care providers are bad and all NHS is superior.
There are many things wrong and one of the things wrong is providers not being held responsible or monitored properly by local authorities. Recruitment of managers, recruitment of care workers not appropriately done. However, the issues are similar within the NHS as well and we should not forget this. The lack of monitoring of how a ward is run as I just don’t get that in the same hospital wards can be so different.
We must push care/nursing/healthcare as a chosen career so we need to show that society and politicians value it . Time we pushed the best practice that is out there, time we were more constructive with our concerns, time to be a solution so if you have a concern do speak up regardless of whether it’s the NHS or not. Local authorities and CQC time to really understand that one persons experience is important to check out. Time we had zero tolerance of poor practice and care. We have the 6 C’s lets make sure they are followed. Stop thinking all are bad there are so many good providers, hospitals, carers/nurses out there. Stop tarring all with the same brush.
I don’t expect all to agree and I don’t mind if you disagree but once I replied to comments today the person sent me a very harsh reply and placed a screen shot of may profile up. It felt like I was being bullied into shutting up. Sadly my confidence on social media is still not up there so I deleted and blocked the person. I am not about airing my laundry in public. I am about being fair. I am about voicing an opinion. I am about learning from others. I will continue of Twitter but it has left an uncomfortable taste in my mouth of how people can be. Kindness and respect cost nothing.