This photo was taken last month of Mum enjoying the summer sunshine in the gardens of the care home.

The care home notified me that they wanted Mum to be assessed for Funded Nursing Care Contributions which I agreed to. I then received an email confirmation of the appointment less than 24 hours before the appointment in which I was informed Mum would also be assessed for eligibility for NHS Continuing Healthcare.

As I was notified of the appointment at such short notice I was unable to attend in person but trusted the care home to ensure a fair process. The NHS requested me to to complete an Individual / Family Statement of Needs Form which offered me the opportunity to provide my view on Mums needs.

A couple of months later I received the results of the assessment which concluded that Mum is not currently eligible for the continuing care, however she is entitled to receive the Funded Nursing Care Contribution which is paid directly to the care home at the rate of £158 per week.

I didn’t expect Mum to receive approval for the continuing care at this stage. The NHS provide a thorough report of their assessment. They test the individual on the following care domains:

– Behaviour
– Cognition
– Psychological and Emotional Needs
– Communication
– Mobility
– Nutrition
– Continence
– Skin
– Breathing
– Drug Therapies and Medication
– Altered States of Consciousness
– Other Significant Care Needs to be taken into consideration

Each Care domain is assessed against a scoring of level of need as follows:

– No needs
– Low
– Medium
– High
– Severe
– Priority (this score only applies to some of the domains)

Mum scored low for most domains such as behaviour, nutrition, breathing. She scored severe or high for the cognition and communication. I agree with the assessment results, although next time she is assessed I will ensure I am present at the assessment so that I can actively participate and provide my feedback and opinion in person.

Hope this may help anyone who wants to know more about the NHS continuing care assessment.

I received an email from Alzheimer’s Research UK during the week. They have teamed up with actor Simon Pegg and Ricoh to produce this video which was launched on 26 June. Check it out.

https://www.alzheimersresearchuk.org/dementiauncovered/?utm_source=Alzheimer%27s+Research+UK&utm_campaign=a71e1e54d7-EMAIL_CAMPAIGN_2018_06_29_11_47&utm_medium=email&utm_term=0_5c686ad188-a71e1e54d7-107396809

Photo circa 1994 when I visited Mum from university

I’m sure it’s similar to a lot of illnesses but with my Mums condition I haven’t seen what could be termed as a steady decline. Her dementia is more like a pattern of spirals of decline followed by a plateau until the next spiral arrives.

A lot of the time I don’t even recognise the spiral until it has passed. Each time she seems to lose some form of ability. The latest spiral is the loss of speech whereby she is no longer able to articulate. Whilst she seems to believe she is conversing naturally she is actually coming across as incoherent. Not too dissimilar to a baby chatting away but not making any sense.

Each time she loses an ability her world seems to shrink. So earlier on in the illness examples would include no longer able to drive – first from the fear of getting lost but also losing the technical ability to drive a car. She lost the ability to operate every day machinery such as a washing machine. Her world literally shrunk when she lost the ability to venture further afield and so navigating from home to church and the doctor surgery was the most she could manage.

At the time we didn’t recognise it but when the care home recommended moving Mum from the residential floor to the dementia floor Mum was with hindsight coming out of another spiral whereby her basic needs such as personal hygiene, dressing etc required far more attention.

With each loss of an ability comes the requirement for increased care and assistance. Now I don’t mean to paint a negative picture. The reality is that it is sad to watch, however as I have stressed so many times happiness can come from simple things in life.

So whilst this time last year I would take Mum out for her favourite fish and chips on a Friday now a cup of tea is all she can manage. Back then she was able to articulate much better so the conversation flowed a bit better and now I have to guess what she is trying to say but we look at pictures in the paper and watch the world go by out the window.

The point is we still have as an enjoyable time now as we did a year ago. We still laugh together as much as we always did. It comes back to the importance of living in and enjoying the moment!

When supporting someone with dementia it is important to remain as patient as you can. This is of course easier said than done especially when the person is repeatedly asking the same questions. My Mum also tended to fixate on certain topics. When I would spend a long weekend with her, she would focus on the same 3 topics for the whole weekend and when you tried to distract her in order to change the subject she would always bring it back to her fixation.

You have to remind yourself that the person can’t help it and doesn’t realise they are constantly repeating themselves. It isn’t their fault – it is just the nature of the illness.

I am by nature a patient person and a good listener. Many people have pointed out how good I am with my Mum and I bring it down to having the patience of a saint! I am prepared to answer the same question over and over again. It really doesn’t bother me. I think we all know how disappointed we can feel when someone is not giving you their full attention or even worse have completely zoned out when you are telling a story. I would hate for my Mum to feel undermined in any way because I wasn’t treating her with respect or giving her the attention she deserved.

My Mum would regularly phone me over and over again having forgotten that she had called me five minutes before with the same question. She went through a period where she would call at all hours of the night. I would always take the calls in case something had happened and she required assistance. It meant I had interrupted sleep and found it rather tiring. It was a case of…‘Mum it’s 2am. I’m in bed – please go to bed yourself and get some sleep’.

I remember one morning when I must have been so exhausted and slept through 12 missed calls during the night. Needless to say there were 12 messages on my voicemail – each one pretty much identical because Mum had forgotten she had already called and left me a message. It actually made me laugh.

The fixating could be challenging. She would make stories up in her head and believe them to be true. It was impossible to convince her otherwise. As a worrier by nature she would think the worst and required constant reassurance.

When going out, you can’t rush a person with dementia. You need to remain patient and allow the time they need to get dressed, showered and ready to go.

If Mum is having a bad day and feeling frustrated by something which ultimately she is going to take out on me, I try not to take it personally. I find a distraction or change of scene can help her snap out of her mood.

Who would have thought that now my Mum is losing her ability to speak and articulate I miss the repeated questions! My patience is being tested in a new way. Now I’m having to guess what she trying to say because whilst she believes she is communicating she is actually incoherent. Being the chatterbox that she is, there is a lot of guessing on my part.

I find sitting in a window and pointing out life go by helps direct the conversation. I always show her pictures in the newspaper. I have made an iPhone video and picture slide show of herself which she loves watching. She also likes the music.

She loves going through her photo frames. Last week when we got to a photo of me and herself she cracked a joke by pointing at herself and saying ‘she is lovely’. We both burst out laughing. So it always comes back to living in and enjoying the moment!

We celebrated Mums 70th birthday a couple of weeks ago over an afternoon cream tea. It was a lovely occasion with close friends and family. Mum’s brother and 2 sisters came over from Ireland for the occasion. The 4 of them hadn’t been all together for quite some time and it was really important and special to me that they were able come together for the celebration. Margaret arranged for a beautiful birthday cake and some fabulous balloons.

I’m really pleased with how the day went. Mum coped very well as I was concerned she might feel overwhelmed by the occasion especially as she struggles to follow conversation in large groups. She seemed very content. If anything it was me who felt emotional. As usual I was going with the flow arranging logistics and hadn’t stop to think how much the occasion meant to me.

Mum’s brother Billy brought a collection of photographs from their childhood which was lovely as they were able to reminisce and Mum still remembers all their friends and neighbours from that time.

I have attached some photos from the Birthday weekend and it will be nice to show Mum the photos when I visit her. Whilst she won’t remember the day she certainly enjoyed the moment and we can continue to re-live it through the photos.

It ended up being a tough marathon as a result of the heat. The hottest London Marathon on record. It was quite scary as people were collapsing all over the place and requiring paramedic assistance. I usually hit the wall after mile 18 but this time I could feel discomfort from mile 8!!

I had to really slow the pace. I didn’t want to find myself in the back of an ambulance like so many other runners around me. I told myself to be sensible and walk when I had to. I found myself fixating on looking out for the next water station so I could pour the water over my head and down the back of my neck. I usually only take a couple of gels but this time required all 4 gels. I also always miss out the lucozade stops but this time I stopped for a couple of sips in order to keep energy and salt levels up.

By mile 24 my mind was screaming at me to stop and walk but when I checked my watch I could see that if I kept running I would make it in 4 hours 30 mins which was the time I had in mind. I decided to dig in deep and keep going – that way it would be over sooner!

So I finished in 4 hours 29 minuets which I was pleased with. It wasn’t the sub 4 hours I had at one stage been aiming for but given the injury and weather conditions not bad at all.

So I managed to raise £5,500 for Alzheimer’s Research UK which is fantastic. I am overwhelmed and touched by the generosity of all my friends, family and colleagues. It makes the effort of months of training, the stress of injury and melting in the heat on the marathon course all the more worthwhile!!

This video was taken back in January when I told Mum I was running the marathon.

Well marathon day is almost upon me with less than 24 hours to go and I’m feeling very relaxed about it.

The last 7 weeks of my training programme have been far from ideal. The shin injury was a big concern and as you know from my last training post, I was battling with the decision on whether I should continue or pull out. With the help of a great sports physiotherapist I have been able to get to the start line. So my training had to be altered. Usually you build up the long runs slowly over the weeks and my original plan was to finish with a 21 mile run before entering into a 2 week tapering period. Instead I had to increase my mileage rapidly over the last 4 weeks by jumping from 3 miles to 6, to 10, to 15 and finally an 18 miler last week. No tapering for me. I have had to train straight into marathon day and so I will be treating the marathon as my long run and hopefully the adrenaline and the crowds will help me battle through those last miles to the finish.

In addition to adjusting the training programme, I have had to readjust my expectations. The hope of running a sub 4 will have to remain a dream. The reality is that having to take over 3 weeks off for the injury has impacted both my speed and endurance and whilst I have felt an improvement in regaining my fitness it won’t be enough. In addition the mini heat wave is going to require that I sensibly pace myself. So the plan is to get to the finish line and this isn’t about a time after all – it’s about raising money and awareness for Alzheimer’s Research UK.

Speaking of which I have exceeded my fundraising target and at the moment stand in excess of £5,000 which is fantastic!

My parents brought me up to be a strong independent woman. I am lucky in that by nature I am very calm and laid back. However, even those of us who are chilled out can get stressed every once in a while. I am an only child, my Dad who was always my ‘go to’ for advice has passed away and I am losing elements of my Mum to dementia. It’s not always easy and so a support network is key.

To say that a weight had been lifted from my shoulders after Mum moved to the care home would be an understatement! I no longer had to worry about her as I knew she was safe and in good hands 24 hours a day.

Aside from the first couple of months when I visited Mum and she would ask if I had come to take her home, Mum managed to settle quickly. She felt safe and she really enjoyed the company not only of the other residents but in particular the carers. She was a bit of a hit – being the ‘new girl’ the other residents seemed to want a piece of her.

She had been incredibly thin when she arrived. Within a couple of weeks she had gained quite a bit of weight and looked much healthier. One thing the carers always comment on is her appetite. Nothing wrong there. When I arrive to visit in the morning and ask if she has had breakfast yet, more often than not they comment on the fact she is on to her second or third breakfast! It wasn’t long before I was having to buy new trousers moving from a size 8 to size 12 quickly enough! Sometimes I wonder if she has too much of a tummy on her but better that she has a healthy appetite and can enjoy her meals given with this illness you have to make the most of the few pleasures left in life.

The same goes for having her hair done. The hairdresser visits once a week and we make sure she gets to enjoy the experience every week.

They have a lot of activities available for the residents to get involved in and visits out to local attractions which is important as Mum is still mobile so it’s good to get her out and about.

As the home takes care of everything I now have the time to enjoy my Mums company when I visit rather than racing around trying to clean the house, do the washing, the cooking and take Mum to all her various appointments as I had to do in the past.

For the first 14 months Mum lived on the residential floor. This was important to me as she was still able to interact well with others and kept her mind active. She had a lovely bedroom on the ground floor which led out on to the garden and she loved pointing out the flowers and plants on the patio which she had helped plant for herself.

After 12 months the home said it was time to move Mum to the dementia floor. She was struggling and required more specialised care. We were a little resistant at first as all believed she wasn’t yet ready, however the care home do know what they are talking about and they are observing her 24 hours a day. With hindsight they were right. She was beginning to struggle and the dementia floor was able to offer her more support for her needs. She was moved along with 3 others at the same time to make it less overwhelming for them. We chose a nice room with a view. Margaret was there for the move to ensure it went smoothly. As you can imagine such a move can be very confusing and set the person back.

I can tell the carers like Mum. She is very gentle and good natured making her an easier and more accommodating patient to deal with. She always greets everyone warmly and the best thing about visiting her is seeing her face light up when I arrive. She might not always know who I am but the recognition is still there.

I decided to go part time at work so that I can dedicate every Friday to my Mum. Initially she was able to spend a number of hours out shopping and a spot of lunch but these days a short visit out for a cup of tea is enough. Too many people is overwhelming for her and she struggles to follow conversation unless it is one-on-one. As my Mums ability to speak has significantly reduced, conversation can be a tad challenging so I tend to direct the conversation given her understanding is still good. I position us in a window when we are out so that we can watch life go by. Watching children makes her laugh and she likes it when I show her videos of dogs on instagram.

I’ll finish this chapter with a funny story of one Friday afternoon when Mum and I returned to the care home after being out for a cup of tea. Mum and I tried to get into her room and the door was locked. I asked one of the carers to unlock the door. It all seemed a bit strange that the door would be locked. When we entered the room there was an elderly man who was a resident asleep in Mums bed. It was such a comedy moment and we were all killing ourselves laughing apart from Mum, the one person who usually likes to have a laugh, not finding it in the least funny. She pulled me aside and said very seriously ‘that it wasn’t right’. She wasn’t impressed!!