350 mile sponsored bike ride for dementia charities, in memory of my Mum, who lost her dementia battle earlier this year

The proposed route

According to the Alzheimer's Society, there are currently around 800,000 people in the UK diagnosed with dementia. This is expected to rise to around 1 million by 2021. Dementia is terminal, there is no cure at present.

Along with a friend, I'm planning a sponsored cycle ride (just the two of us), in aid of dementia charities.

We're planning on following the National Cycle Routes, from Southwick, West Sussex, to St Austell, Cornwall.

The ride will be in memory of my Mum, who sadly lost her battle with vascular dementia on 6 March this year. She spent her later years in Sussex, but lived and worked in St Austell during the 1970s and 1980s. I was her full-time carer for the last five years of her life.

My wonderful Mum, Jean Feather

The ride will start on 10 September, and is likely to take up to 10 days.

The route is approximately 350 miles long.

Southwick Community Church

We'll be starting from Southwick Community Church in Sussex, and officially finish at John Keay House, St Austell, the former HQ of English China Clays (Imerys), where Mum used to work. But, we'll also be calling at the site of the former Cornwall Coliseum, where I used to work during the holidays, when I was at Bristol Polytechnic (now UWE), and of course, the Eden Project.

John Keay House

Cornwall Coliseum in its heyday

Eden Project

For the most part, we'll be stopping overnight at various campsites along the route.

We'll be taking photos and videos along the route, and we'll be sharing these online as we progress.

The two main charities we're be raising money for, are:

https://www.alzheimers.org.uk/

Registered Charity No. 296645
We're officially part of the Alzheimer's Society cycle team - supporter number 2881387

JustGiving - https://www.justgiving.com/fundraising/martyn-feather-as

or text ASDP84 £2 to 70070 (if you wish to donate more just enter a different figure after the £ sign - e.g. £5)

https://www.dementiauk.org/

Registered Charity No. 1039404

JustGiving - https://www.justgiving.com/fundraising/martyn-feather-duk

or text BIJJ81 £2 to 70070  (if you wish to donate more just enter a different figure after the £ sign - e.g. £5)

I've also set up a blog about the bike ride, and the preparations we're making towards it https://cycling4dementia.blogspot.co.uk


@inmemoryofmymum can be found on both Facebook and Twitter, so you can follow the ride there too. You can also find me on Facebook - Martyn Feather (Skippy), and Twitter - @ZkidooKreativ

Grief and what may trigger those sad moments - based upon my own personal experiences...

I remember, when my Dad passed away, almost 23 years ago, that from time to time, certain, totally unrelated things or events, could trigger a relapse into a brief period of grief.

Since Mum passed away, five weeks ago now, I'm occasionally experiencing such triggers all over again. Sometimes, it's something totally unexpected that can trigger such feelings.

The other day, I was coping quite well. I even went for a cycle ride in the afternoon, which helped significantly. Then not long after getting back home, I received a phone call from the Community Equipment providers, who were unaware of Mum's passing, to set up an appointment to service her hospital style bed. After I explained the situation, and hung up - kapow! It was a trigger! The grief came flooding back, albeit briefly.

Whenever I met people who knew Mum, or knew about Mum, and offered their condolences, this often triggered the same feelings of grief.

Evenings alone also proved to be difficult, as this was when I used to sit in Mum's room and watch TV, watch DVDs, or listen to music with her.

Talking of music, I know there will be certain tracks, that will also prove to be triggers.

Sometimes, things that I know will act as triggers, can be avoided, but it's the unexpected triggers, the things or events that we don't even consider, that can be the hardest to overcome. It could be a place, a smell, a sound, or even some apparently obscure event, that can sometimes trigger memories - and suddenly, the grief is back.

I recall, quite a while after my Dad passed away, driving through the countryside in South-West England, along a route that was often used by my Dad when I was young. Suddenly, along that very same route, by the side of the road, loomed a large ornate gateway, part of a large country estate. I remembered that gateway from my younger days, when Dad was driving us from Sussex to Cornwall - it was one of those unexpected triggers!

I know these triggers will diminish over time, and that time heals, but there will always be something, totally unexpected, which will bring the memories flooding back - and suddenly, the grief is back. Not as intense as the early days, but it's still there.

On the up side, although there is grief, it's often accompanied by happy memories, once the initial grief has subsided. What seems to cause some of that grief, is knowing that those happy memories can no longer be shared with those close to us, who are no longer with us, and who were once part of those precious memories.

Mum's grief after the loss of her Mum, and its effect during her dementia journey...

For much of Mum's life, after her Mother passed away, she would occasionally experience grief, brought about mainly by the guilt of not being able to be with her Mother, when she needed her daughter most. Mum never forgot that, and lived with that guilt, and the grief it would sometimes bring, for the rest of her life.

In the later stages of Mum's dementia, she would often call out for her Mum. Fortunately, there was a photograph of her, on the wall of her room, and I was able to point her to it. Seeing her Mum's face, was enough to help to reassure her, and keep her calm.

The aftermath of losing a Mother to dementia, what does the future hold for me?

It's now three weeks since Mum passed away, yet there is still much to be done. Whilst I've single-handedly managed to arrange some of the more important things, there are still many other matters to deal with. But, here's where the toll of caring for a loved one long-term, and the grief through the loss of a loved one, gang up to try to defeat you. They certainly seem to be winning at times.

Some days, I just don't feel like doing anything important. But, I know I'm going to have to, at some point very soon.

There are many worries, especially financial. Mum's dementia, in it's earlier stages, meant that she lost quite a lot of money to unscrupulous individuals, who took advantage of her situation. Insurance policies lapsed, and her finances took a nosedive to pretty much zero. That, along with the costs of agency carers, resulted in a final bank balance of not very much.

What is left in her account, will cover most of her funeral expenses, and nothing else.

Her pensions, of which she had four, have now stopped. My current income, is purely from the state. I received a carer's allowance, and income support, which in total amounted to very little indeed. For the past four and a half years, we existed on Mum's pensions, but they've gone now.

Caring for Mum for so long, took it's toll. Although, I wouldn't have had it any other way. But, now I find myself on the brink of poverty, as part of my reward for caring for so long, for loving my Mum, and doing everything I could for her. I'm not bitter, I loved her, but without her, I'm worried about what the future may hold!

I'm nowhere near ready to even think about working again, and even if I was, I'm not even sure what I could now do. I've been out of work, so to speak, for five years in total, and next month sees my 60th Birthday! Who on earth wants to employ a 60 year old Graphic Designer? Especially one that hasn't actually carried out much designing, for so long!

Being a somewhat optimistic person, I guess I'm hoping that something will emerge over the coming months. Something that I'd be happy to do. I certainly have plenty of experience of caring for someone living with dementia, and all the difficulties that entails. But, there is no way I would even want to consider becoming a care worker, I've more than done my share of caring.

What I have discovered over the last few weeks, is the complete lack of support, at least where I live, available to former family carers. Yes, there are bereavement counsellors, but not specifically for family carers of someone with dementia.

How many of them understand, when a close family member cares for someone with dementia, that grief and bereavement is an ongoing process, throughout the period of caring? A family carer grieves, and suffers bereavement, each time they lose another small part of the person they care for, as the evil of dementia progresses.

By the time Mum passed away, she had become a mere shadow of her former self. A helpless little old lady, whose mind and body had been eaten away by this evil disease.

So, whatever I decide to do in the future, part of it at least, will be a legacy to Mum. If I include the earlier stages of her dementia, I cared for Mum, for a total of around 10 years, especially after it became clear that she was beginning to have difficulties with everyday chores. There is no way I can now walk away from that 10 years of experience, and not try to help others who find themselves in similar circumstances.

How I do this? I don't yet know. But, over the next few weeks and months, I'll do my best to find out. Whatever I can do to help others living with dementia, and those family members who care for them, I'll do it.

That will be Mum's legacy.

When caring for a loved one comes to an end...

Four and a half years of caring for Mum, then? Emptiness!

It'll soon be two weeks since Mum passed on, and I'm still trying to get used to the idea that what I did for her, for the last four and a half years, is over.

Caring for a Mum with dementia, who was completely bed-bound, and unable to feed herself, was a full on, 24/7, responsibility. With care workers coming to help four times a day, and in the last three months, Community Nurses, once a day, my days were made up of a very precise, set routine.

My days were occupied making Mum meals and providing drinks, doing a local shop for essentials, and occasionally collecting her prescription drugs.

My days would usually start at around 8am, and often go on until the early hours of the following day, allowing me a small amount of time for sleep. If I awoke in the middle of the night, I'd go and check on Mum. That was my life.

Then, one night, it all came to an abrupt end. I knew it was coming, but I was unable to prepare myself for it. All of the community support provided during those four and a half years, stopped. The doorbell stopped ringing. The friendly faces of Mum's care workers were nowhere to be seen. It was a massive shock, made even worse by the loss of Mum.

None of this was helped by the fact that during the first few days I had to contact Mum's doctor, to arrange for his certificate, and liaise with the funeral directors over arrangements for cremation and a service to celebrate her life.

Once I had the doctor's certificate, I had to make an appointment to see the Registrar of Births, Marriages and Deaths, in order to officially register Mum's passing, and collect copies of the official death certificate.

None of these tasks took very long, thereby leaving me with what suddenly seemed like vast periods of time, with nothing to do. I was lost! In limbo!

I took to going for long walks, which helped. I enjoy walking and cycling, and will very soon be out and about on my bike. But, I've yet to decide what I'm now going to do with my life.

For most of my working life, I've been a Graphic Designer, but, as I'll be 60 next month, returning to that occupation is not really an option. Besides, I'm not ready to go back to work, any time soon.

I enjoy photography, so I might pursue that for a while. I've also considered doing some voluntary work, helping others who either care for those with dementia, or those living with dementia. I've plenty of experience on that score. But, I'm not ready for that yet either, and I'm not sure when I will be.

Mum's service and cremation takes place next week, so after that, and once everything else is sorted, perhaps then, I might be able to think about what the future holds for me. One thing I do know, it's going to take me quite some time.

I guess, on the up-side, I've got quite a lot of that now!

Grieving - Taking each day as it comes...

It's almost a week since Mum passed on, and whilst the pain is easing, it's still there. There are quite a few matters I will need to sort over the next few days, and some of them could trigger further grief - I'm slowly beginning to work out what some of those triggers may be, and can take action either to prepare for them, or just avoid them.

For the first few days, I turned everything off in the room she spent the last four and a half years of her life. Then I realised I'd turned it into a sad, dark, depressing little room, rather than the one that used to be filled with so much joy and happiness. Everything is back on now, and the feeling of happiness has returned. And, even though Mum is no longer there, I can still feel her presence, and see the things she loved.

Her room won't become an unchanged shrine to Mum, as some of the equipment needed to keep her comfortable, including her hospital style bed, will have to be returned. But, the colourful lights, the TV, and all those sort of items, will remain.

Mum "conducting" André Rieu

Mum's funeral has been arranged, and although she is to be cremated, the service to celebrate her life, will take place in the funeral director's own private chapel. The coffin will then be taken to the crematorium, for an unattended private committal, later. This will avoid the conveyor belt of proceedings at the crematorium, as there will be more time for the service, and to pay last respects, before adjourning to another room in the same building, for refreshments.

For friends and family unable to attend, the chapel provides a webcast, which can be viewed, wherever they are in the world, and still be part of the service.

The chapel where the service will be held

I've organised a single spray of flowers for the coffin, made up of white roses (for Yorkshire, where she was born), thistles (for Scotland, where her Dad was born), along with other white flowers and foliage. The coffin will also be draped in a Royal Stewart tartan Plaid (the Plaid being the piece worn over the shoulder, when wearing formal highland dress), along with a large family bible, upon which will be a further single white rose.

As a mark of respect for Mum's Scottish ancestry, I will be wearing a kilt, a short informal grey tweed kilt jacket and waistcoat (vest to our American friends), white shirt, black necktie, brogues, hose and flashes, and, of course, a day wear black leather sporran.

There will be two or three pieces of music, all of which I will be recordings made by André Rieu and his orchestra, as Mum very much enjoyed watching his concerts on DVD. (See pic of Mum "conducting" above). The tracks, though not yet finalised, are likely to be "Nearer My God to Thee" at the start, "Time to Say Goodbye" (possibly whilst images relating to Mum's life appear on the plasma screen), and "Adieu, Little Captain of my Heart" at the end. The first two are somewhat sombre, but the final track is much more uplifting, and jolly - just as Mum would have liked it.

This week involves somewhat more official tasks, which I will undertake as and when I feel able. I also hope to post more on this blog as time allows, in the hope that some of this helps others too.

Until next time, Ciao! for now.

The pain of losing a Mother

It's been two days since Mum passed away, and though things are easing a little, it's still very tough and very painful. Seeing her decline so dramatically over the past few weeks, was incredibly painful, especially when realising that the end was indeed close.

There are still many things to deal with;

Officialdom - regarding pensions, benefits etc.
Funeral arrangements
Doctor's certificate
Registering the death
Finances etc. etc.

I'm taking each day as it comes, and I'm only dealing with what I feel I can at the moment.

Although I don't have the support of any relatives nearby, I do have a friend and his Mum providing support, which is good. I also have the support of one of Mum's care workers, who has also become a good friend over the last couple of years.

My pal and his Mum are both Baptists, and whilst I am not particularly religious, Mum was a Christian, and their Baptist minister has agreed to hold the service - I met with her yesterday, which was helpful.

My pal and his Mum also came round last night, with two other Baptists, one from Sierra Leone and one from Germany, for a friendly chat and drinks. Again, I found this very helpful as I move forward through the next phase of my life.

The hardest part so far has been the state of limbo I find myself in. From four visits a day from the careworkers over the last four and a half years, and daily visits from community nurses over the last few months, to nothing, in the space of just a few hours!

I've been absolutely overwhelmed by the responses and offers of support, I've had on both Facebook and Twitter, from friends both real and virtual. As well as those on my own small Caregiving Forum.

One of my major concerns was funeral expenses. In the early stages of her dementia, Mum got her finances into a real mess, and any insurance policies she may have had, lapsed. Fortunately, here in the UK, there is some financial help available from the government, available to those in receipt of certain benefits, of which I am one. But it won't cover all of the funeral costs - so I still have to find some of the costs.

I'm meeting with the funeral directors tomorrow to discuss the options available. It will need to be a simple funeral to keep costs down, fortunately, under the government scheme, cremation costs and the cost of the Doctor's certificate are covered.

I was never planning a grand funeral for Mum, as I've been grieving for the last four and a half years, and have said goodbye to various aspects of her personality, and her as a person, during that time, and on numerous occasions.

It is now time to celebrate her life, which the minister wholeheartedly agrees with. Mum had a good life, and lived, for the most part a happy and healthy one. She managed to survive until just after her 90th Birthday. I did everything in my power to keep her happy and safe, during her last few years.

Jean Feather b. 20 January 1927, d. 6 March 2017
RIP Mum, I love you and always will, and I'll never forget you.