How Alzheimers has helped me live my dream

My mum died of Alzheimers, her mum died of Dementia.  The difference between the two is 'Dementia is the term applied to a group of symptom's that negatively impact memory, but Alzheimers is a specific progressive disease of the brain that slowly causes impairment of memory and cognitive function'.  That is the easiest way to differentiate between the two.  However, it is very easy to assume they are same thing.  

Mum & Nan

My nan who reached the grand age of 90 was also deaf.  She had been deaf since the age of 4.  Life had never been easy for her and having dementia was very difficult.  When my grandad passed away it was not long before she needed full-time help. A home that could help for someone with dementia and deafness was found on the Isle of Wight.  They were brilliant and she loved her life there with friends that she had made many years before who were in the same situation.  She would remember little things like her name, her children's names.  She knew she knew you, but she didn't know your name if you weren't immediate family.  She was able to walk, play games and loved interacting with other people.  My nan was a person that was full of life until the very end.  Nevertheless she still had dementia and in her latter years couldn't remember anyone or the general day-to-day routines of hygiene or housekeeping.

My mum on the other hand had Alzheimers.  It started when she was in her late fifties.  We all noticed a difference in her and she also noticed it.  At the age of 67 I was attending a memory clinic with her.  Her memory was slowly getting worse.  She was still very active though and at 71 decided she wanted to take up Senior Netball in the local village hall.  It was here that she had an accident falling over that resulted in her having a hip operation.  Almost immediately she came out of surgery we noticed a difference in her.  

Whilst she was still in hospital she was telling stories that were hugely theatrical.  The great grandchildren thought it was hilarious, but we knew something was not right.  All of a sudden out of the blue I got a call from the hospital at 8pm one evening.  Could I go up and see if I could calm my mum down.  I raced up the hospital and she was throwing fire extinguishers at the nurses, screaming about things she had seen the doctors doing (all totally not true and far too explicit to write here).  Eventually I calmed her down and got into bed with her and talked until she fell asleep.  That was one of many many times I was called to the hospital to help sort my mum out.   

Mum with Matthew, Jessica & Izzy
Southampton General Hospital

Mum with Zed & Zack
Parklands - Basingstoke

I had Power of Attorney for my mum and eventually they told me that the operation had had a bad affect on her and that her Alzheimers had gotten worse very quickly.  I was told she could and would be violent, abusive and not realise she was being like it.  She was moved to a secure ward where she could not escape and I was able to go and see her whenever I liked.  There were so many incidents that I find it difficult to remember all of them, but from barricading herself and other patients in a room because of a war that was going on outside, fighting with the nurses and doctors, telling awful untrue stories about the doctors, throwing a fire extinguisher through a 7th floor window, throwing her food around, colouring patients faces with marker pens, it went on and on and on for 27 weeks.  

Mum could get out the ward if she was escorted and there were many funny times during her stay there.  I once took her to the pub for lunch and met her sister and brother-in-law there.  I knew if she told the nurses they wouldn't believe her so it was perfect.  Funnily, she did go back and tell them she'd had a lager and lime in a pub, obviously they didn't believe her, much to my amusement.  I bought her a tambourine because she said she wanted one.  When she was 16 she used to play in the Salvation Army.  I was stunned to see her play it like a professional.  Never in all my 50 years had I seen her play a tambourine, she was amazing.  

Mum at Kitnocks

During all this time we (her sister Sue and I) were trying to get her into a private secure home and finally one came up.  We went to visit the home first and they assured me they looked after all levels of Alzheimer patients.  Mum had a bad habit of punching and kicking people, out of the blue.  She would have her own room and bathroom, it was perfect.  At long last my mum could leave the hospital and knowing she was being looked after I could take a break.  It was during this break that I got a call from the home to say there had been an incident and that they had had to section her and send her to a secure unit (once known as asylums).  I was shocked.  Her medication and the new home should have been enough to keep her calm.

Once again we raced back because I had all sorts of images going through my head of my mum in a locked up cell, white jacket on and no windows.  This couldn't be happening.  When I got there the place couldn't have been further from what I was imagining.  It was a quiet small ward of about 20 people, all who had Alzheimers or Dementia.  There were gardens she could walk around, she had her own room and I was assured that after about 6 wks of therapy she would go back to her private home.

It was here that she was diagnosed with Psychotic Alzheimers.  Once I had been explained what was going on with her brain it all started to make sense.  Everything that had happened over the past 9 months.  I was told that nothing would make sense to her, black was white, yes would be no, right would be wrong, day would be night - everything would be upside down for her. Eventually she may stop talking and walking because her brain would not remember how to talk and walk.  If she was lucky she had a year left with us, she was 72 years old!

Mum in the Southampton Hospital Secure Unit -
Mum used permanent marker pens as make-up!

What in fact did happen was that she fought a lot with the nurses.  One day she closed her eyes and would never open them again, she could hardly walk a step without help, she forgot how to swallow and so her food had to be syringed into her mouth, she stopped talking, but she did sing with me.  She allowed me to paint her nails, even though she didn't see them.  She walked with me in the gardens even though she could not open her eyes.  She played her tambourine for me and others in the recreation room, again with her eyes closed.  She told me the names of her children, but didn't know I was her eldest.  She told me stories about where they had gone that day, but she hadn't left the building.  She truly believed that they had daily outings, which to me was fantastic she thought that, because the thought of her day-in and day-out just sat or laid with her eyes closed for 24hours a day broke my heart.

Every now and again there would be a glimmer of the old mum I knew.  She wrote a book many years ago about being the child of deaf parents 'My Parents Voice'.  I took a copy of it to read to her and this triggered memories that weren't even in the book.  It was amazing to listen to her.  However, quickly she started to go downhill.  She lost so much weight and one evening, an hour after I had got back from seeing her I had a call to say I should go back immediately.  I called my brother and sisters and got in my car for what I knew would be the last time I would see her.  

She spoke to me and her sister Sue very briefly and then with my sister we sat with her the entire night but she never said another word.  She passed away peacefully cradled in my arms, even though her last 18months of life had been a living nightmare.  

It may be wrong of me to say that I was relieved, but I was.  Not just for my mum but also for me.  I had been driving 100 miles a day to see her for nearly a year, been fighting her case from almost day one to get her the right medication, the right home, the right nurses.  I had seen her go from a vibrant woman who was my mum and who knew she had Alzheimers to a psychotic woman who punched me and called me names, who I watched fight tooth and nail with nurses that had to hold her down to sedate her.  I was happy she was in a better place now and could rest the diseased brain that was killing her.

Now to how Alzheimers has helped me.  Mine and Steve's decision to go and sail as far as we can for as long as we can was even more important than ever now.  When my mum had her full faculties she once said to me 'I regret not going to live in Australia when I wanted, you should go and see the world in your boat'.  I know it's not a full gone conclusion that I will end up with Dementia or Alzheimers and I don't live every day of my life thinking that it is going to affect me, but it did help me decide what I want to do with my life.  What I do is make every day of my life worth living. 

We set a date to set off sailing and worked on the boat to get her ready for that day.  Our family already knew that one day we may go, but now they had a date. 

I don't want to ever stop travelling whilst I am able and if life should change for me Steve has agreed he will tell me if he notices that difference in me.  He has said as long as he is able to look after me and still travel we will, even if it's not in Cordelia.  

Steve and I have a fantastic life.  We laugh a lot and we talk a lot.  Whilst we can still sail, we will travel as far as we can for as long as we can. I may live until I am 90 like my nan did and how wonderful that would be.  Whatever my future holds I know I have lived life to my fullest, been places many people only dream of going, met people that are now part of my memory bank, eaten foods that I never knew existed and most of all will spend this life with someone who knows me so well and makes me the person I am.

I create videos of our travels so that if I do start to forget, Steve can remind me.  I write blogs about our adventures and whatever takes my fancy at the time, like this one.  Live life to the fullest, it's too short to waste.  We're only here once so make it count 💛

Mum aged 19

Mum and me at her surprise 70th Birthday Party

  

Mum, Nan, Grandad, Sue, Bob & Pat

Me, Nan, Mum, Jessica & Michael
5 Generations 

Mum's 70th Birthday - 2014

Mum's book - My Parent's Voice - https://www.goodreads.com/book/show/49865008-my-parents-voice

Don't feel too guilty......

We've been full time liveaboard cruisers now for three years,  however our decision to sell up the family home, buy a boat and sail as far as we can for as long as we can started over 13yrs ago.

We had great jobs, not massive highly paid jobs, but we earned enough to have holidays abroad and buy our own house.  I can't say it was easy, that would be lying.  We started off in a 2 up 2 down mid terrace house and ended up in a 3 bedroom semi.  It was never about how big the house was, it was about family time with our children, which was never easy because we both worked.

Family time for us wasn't just about holidays together or about big Christmas presents, it was about ALWAYS sitting down to Sunday dinner together.  Our children moaned, but we insisted no phones, no door answering, just us and sometimes grandparents. It was about quality time sat around a table eating together. Other times we would hire games or films and have what is now known as 'Movie Nights'.  We tried to be the best parents we knew how to be.  We weren't perfect but we bought up our 3 children in a loving, working environment and now each of them are doing the same with their families.  We didn't do a bad job. 

Steve and I both have parents that are still with us.  My mum passed away in 2018 under a particularly bad strain of Alzheimers and Steve's dad passed away with cancer a few years before.  My dad, step-mum and Steve's mum are still with us.  My dad hated the thought of us going away and even now he often says I should be back in the UK, 'where I belong' apparently!  Steve's mum is happy if we are happy, which is great.  They both still live in their own homes, my dad still drives and is fully independent.

When we decided to sell up and sail off we naively thought it would happen quickly. Reality is that there is so much more to organise that it sometimes takes years longer than you initially plan. In our case it was our children getting married, grandchildren being born,  parents passing away and financially making sure we could manage it. 

Steve's parents were both from Liverpool and moved down to Southampton in the 1960's.  In those days it might as well have been the other side of the world to the family they were leaving behind.  They built their lives bringing up 3 children, emigrating to Portugal and then returning to the UK.  No-one was going to stand in their way.  Steve's dad had a boat when he was young and boasted to his mates about us and our Venus Ketch.  If he was still with us, he would have loved sailing on Cordelia in the Med and beyond.

My dad was adopted when he was 4.  When he was 18 he decided to find his real parents.  My grandparents were mortified and called a big family meeting where he was told he was not to go and find them.  He did anyway and the result was not quite as he hoped but he did gain a brother he never knew he had, who's daughter was my bridesmaid many years later.  My mum had parents that were deaf.  It was a real wrench leaving them to marry my dad as she was the eldest and had helped them so much in a world that didn't understand at the time that being deaf was a disability and that they were not freaks.

When we look back over the years our plan was being implemented, there is nothing we could have done differently.  We had prepared our family by telling them well in advance that this was our dream and one day we would be taking-off. 

We worked for 30+ years, brought up 3 beautiful children, went without in the latter years in readiness for our trip of a lifetime.  We introduced both parents to Whatsapp so that we were easily reachable and so they could see us when we spoke to them.  We told all our family that we had put aside a contingency that in the event either or both of us were needed back in the UK, we had the funds to return.

Our parents are in the 70-80yr bracket and still have plenty of time with us.  Our children are building their lives with their children.  We miss them all of course, but we built family values with bonds that tie us together forever.  Our 3 children have a fantastic outlook on life and their positivity and enthusiasm for life helps us not feel too guilty about fulfilling our dream.  

You live once and in the great scheme of things we are here on earth for a miniscule of time.  You'll only every regret the chances you didn't take.

Mike, Jess, Matthew, Gem, Maisie, Steve, Zach, Stu, Zed, Jax, Ryan, Jude, Steph, Trine

Dad & Carol

Mum and Annette

Steve and Mum

Why not watch us on our travels across the seas. It's FREE to subscribe, just click the link below:

youtube.com/c/SailingSVCordelia

https://youtu.be/1Qem1-dNZbE

Island hopping the Ionian Islands, Greece

We have left Corfu and are now cruising the many many difference anchorages of the northern Ionian area of Greece.  We don't have to go far each time we leave an anchorage because there are so many small and large ones.  

Meganisi Island and sailing area is our next long stop where we spend quite some time.  Vathi, little Vathi, Varko, Spartkhouri, Tranquil Bay just a few of the many many anchorages and villages we visited.

We were also lucky enough to spend a few days with friends Kim and Jonathan, Sean and Silvana, Colin and Angelina, Peter & Dodo that we wintered with from Ragusa.  The sailing becomes a very different life when sharing with friends. Sharing experiences is what this life is all about.

The power of social media means that we all make online friends that we have never met. We started to follow Zircon Sailing Adventure, Lizzie and Rob Bolan as they had left the UK at almost the same time as us in 2019, however differently to us they bought their boat to the Med via the French canals.  We bumped into them in Tranquil Bay and spent a great evening with them.

Gus is loving the water, taking every opportunity possible to take a dip.  He also loves coming out in the dinghy with us.

The Covid pandemic is still having an effect on tourism throughout Greece. Holiday resorts are very quiet with mainly Greeks taking advantage of the quiet to bring their families, almost no other nationalities are visiting.  We feel very fortunate to be able to do what we are doing at this time.

Never give Greece a miss if you are sailing the Med.  It is the most wonderful, laid back, beautiful country  that has so much to offer especially for the liveaboard community.

Corfu Greece - we start to explore this beautiful country

We entered Greece having had a great sail from Syracuse in +30knot winds.  Cordelia sails at her best when when the winds are +20-25knots due her weight of 18tonnes.  There were times when the wind dropped to nothing and we had to motor, but before we knew it we had Corfu on our horizon.

The UK has left the EU so this means we now have to check into each country we visit, just as we would if we were anywhere else in the world. With this in mind we headed for Gouvia to find immigration and customs.  We had already paid for our Tepai cruising tax and once we had checked in, which took about 2hours, we were free to move around Greece.

We had never been to Corfu, even as holiday makers so we were excited about exploring the island.  Corfu main town was delightful with old and new buildings standing side-by-side. Nothing seemed to be out of place though as the old buildings have been artfully and subtly changed to accommodate either restaurants or shops.  We had not had lamb for over 18months so our first mission was to find a taverna that offered lamb.  Our meal was absolutely delicious and well worth a return visit if we come back to Corfu at some time.

We spent a couple of days provisioning and exploring Corfu town and then started our exploration of the hundreds of anchorages that the Ionian Islands have to offer.  There are over 600 greek islands of which over 220 are inhabited and we are only going to see part of the Ionian area.

Our first anchorage was Petitris, where we experienced our first 'on-the-quayside' taverna. We can take the dinghy right to the shoreline of the place we were eating. It was fantastic dining and looking out over the bay where Cordelia was sat in the sunset with other yachts.

We are now in gin-clear water, something we had read about and never imagined that we would sail in.  We have been told by other cruisers that in our 2-month stay in Greece we will only scratch the surface of what it has to offer and already we understand why.  You only need to move 20mins and you are in a different anchorage with a different view and if you're lucky a different taverna.

In our first couple of weeks we went on to visit the anchorages of Sivota Blue Lagoon, Giaos, Two Rock Bay, Lakka and Preveza before we entered the Lefkas Canal that took us to yet another beautiful part of the Ionian Islands.  You can read about this in our next blog.

What we have noticed so far is that Greece is set up for cruisers.  Most of the anchorages have pontoons that lead to tavernas and in some cases a few pontoons.  You can either leave your dinghy if you are anchored or you can take your boat and moor stern-to to the pontoon.  Most places have electric and water, which can be as little as €10 for the night.  Very few pontoons charge you for the berth as long as you use their taverna.  All places have large rubbish bin areas so that you can dump your rubbish.  There are supermarkets or mini-markets that cater specifically for cruisers, some even deliver to your boat. Eating out though is reasonably inexpensive with a meal for 2 with wine that can be had for €30.  Launderettes are the norm in every port.  We have even found local people offering a laundry service from their home. Greece has fast become a favourite of ours.

Whiling away our time in Sicily

We had our initial Coronavirus innoculation early May and had to return to Siracusa in mid June for our 2nd jab.  Also, after some toing and froing with the water maker company Osmosea about why our water maker was not producing anywhere near the correct amount of water, it was decided that it needed to go back to Osmosea's workshop in Tormina, Sicily.

With all this happening and the fact that we were due to leave Sicily as soon as our 2nd jabs were done, we decided that we should hire a car and take the water maker back to Osmosea, have our jabs and then wait for the water maker to be returned.

Matt & Anna our friends who were sailing down from La Coruna were due to arrive and we wanted to spend some time with them before we departed for Greece.

The water maker was returned and to add insult to injury, even though it has only been used for 1 season, it cost us another €700.  Unfortunately, we were not able to get a answer as to what was wrong with the unit and when tested, although it was 100% better than it was, this was still only 50% of the actual production levels we should expect. We ended up replacing a valve that Steve found was broken. We told Osmosea who wanted another €120, but we ended up going to Schenker (competitors), who sold us the same part for 60% less.

Unfortunately, all of this work and money did not solve the problem completely.  We are producing just over 50% of the expected volume, which is enough to keep us going this summer, but obviously not good. We now think we need to replace the membrane- another €300!  

The initial cost of the machine was £4250, so with this additional unexpected expense we are well over £5000.  All rather annoying when we originally wanted a Rainman, but were talked out of it by the dealer and pushed towards the Osmosea.

So far water can be produced at a
cost of €44 per litre 🤣

We found a fantastic new launderette in Ortigia and made sure everything large, like bed sheets and sofa covers were washed before we left.  I had ordered an Adler washing machine, which turned up whilst we were in Siracusa, but this is only good for up to 3lb of washing.

Our 2nd jab made us a bit poorly for 24hours, but nothing too major.

After sorting the water maker out, making a repair to the engine, provisioning on essentials and fresh foods we were ready to leave for Greece.

Our final night was spent with Matt & Anna.  We were hoping they would be able to come with us to Greece, but Nomad their yacht needs a lot of work before they can embark on a holiday-like period with us.  I know we will see them again someday.  We are travelling fairly freely and they have jobs that enable them to travel.  We will meet again soon, I know it.

If you've got 10mins, watch our latest videos below or subscribe to our YouTube channel at https://youtube.com/c/SailingSVCordelia 

Island Hopping in the Aeolians

The Aeolian Islands are located just north of Sicily and with a light wind can be sailed to in a few hours.  The islands poke up out of the water like pyramids and although in the main they are made up of volcanic rock there are also large parts of each island that is very green with vegetation.

This was the beginning of the holiday season in a covid relaxed Sicily.  There were only a few people about, however each of the islands were shaping themselves up for what they hoped would be a booming post covid summer to remember.

Our first stop was Lipari.  Anchoring just outside of Lipari town can be a bit rolly because you are rather exposed to the easterly winds but mainly to the many ferries, tourist boats and fishing boats that come and go out of the harbour.  We very nearly gave going ashore a miss because of the many ferry boats but decided that as leaving the dinghy was easy in the small fishing harbour, we may as well go and have a look.  What an amazingly pretty place it is.  The harbour entrance overlooked by a few restaurants was so picturesque and the little winding roads and narrow lanes with their shrubbery at both ground level and hanging from balaconies gave it a real mediterranean feel.  We were so pleased we had decided to go ashore.

We moved up the coast a couple of miles and visited a derelict pumice factory.  The coastal weather conditions has eroded it so that it looks like it had closed 100years ago, but in fact finally closed in 2007 due to the islands becoming a Unesco Heritage Site.

Our next island was Selina.  The waters were so crystal clear even though they were very deep.  With each island having sheer and high slopes, these dropped into the water several hundred feet just metres away from the shore in many places.  Out anchorage in Selina looked up a very steep hill and once again taking the dinghy ashore was easy with a small marina that had a slip for fishing boats and a small beach next door.  It's amazing how much better it makes you feel when you can easily tie up your tender in a place that you're not worried about.  Selina main town was very small but quaint.  There are more actual houses here than in Lipari and each one was either covered in all colours of bourgainvillea flowers or lemon trees and vegetables.  Almost all of the houses also had a magnificent uninterrupted view of the sea looking towards the other islands.  

Our third island was Panarea.  This is one of the smaller islands with very few anchorages. The west side of the island being very steep & rocky but extremely beautiful.  We anchored in a small bay where there was a beach and we could go for a hike.  We didn't go to the town, deciding that we were quite happy with the stunning scenery that Panarea had to offer.  Our hike didn't disappoint with views into the bay and across to Selina and Lipari.

Our final island was Stromboli.  We couldn't get here last year due to engine troubles but this year we were determined to see the erupting volcano.  We sailed during the day so that it was almost night when we arrived.  We arrived thinking that perhaps all the hype about the eruptions was just that...hype.  It was 8.30pm, we could see the peak of the volcano but nothing was happening, what an anti-climax! Then just as we thought we may just turn round and motor-sail back to Panarea the slightly darkened sky brightened with a glow of shooting lava and orange hot rocks and the volcanic show had started.  We estimated it must have reached 100ft high above the lip of the crater.  It seemed to breathe for a few moments and then roar so loud, we couldn't believe we could hear it from just outside of the exclusion zone in the water.  Its a sight that makes you feel very vulnerable and insignificant but so exceptionally lucky to witness something that ultimately created these beautiful islands.  Amazingly on the other side of the volcano there is a small village where about 300 people live.  Why someone would live so close to such danger is beyond me.

Our time in the Aeolian Islands is nearly over.  There are 2 smaller islands we did not visit and if the water had been slightly warmer we would have snorkelled the many rocky outcrops.  We are struggling with the watermaker, which has to be returned to the manufacturers in mainland Sicily and we also have our 2nd vaccine due in 10days.  I'm not sure if we will ever return by boat but these islands are definitely somewhere we could visit again.  If you get the chance to visit...GO!

We're going damn to COVID and BREXIT!

We have spent over 6months in Porto Touristico Marina di Ragusa (MDR) preparing for summer 2021, making repairs and making some amazing friends. Friends we will definitely meet or bump into in an anchorage somewhere in the Med, Caribbean or even back in the UK......maybe!  Our only regret, which was totally out of our hands is that we have not been able to see any of our family, Covid restrictions did not allow it.

Having got over the realisation of how much different life is going to be now we are out of Europe, the next battle was Covid. How we were going to get a vaccine, could we get a vaccine and where we were allowed to sail. As with the rest of the world, countries were changing rules and criteria by the week. Keeping up with it all is a nightmare. 

Finally, a small group of berth holders managed to get the Astra Zenica vaccine as they were over 60. Steve and I travelled to Ragusa main town 3 times but each time we were told NO, only if we had an ailment or were over 60. The crazy thing is Sicily was struggling to get their own people vaccinated. They were scared due to someone dying 2 days after their jab and 3 people being arrested over his death. He may have died for any number of reasons but as he'd recently had the vaccine, they blamed that. There was hardly ever a queue to get a vaccine, maximum 20 people. The whole situation was frustrating. They even threw out 250,000 vaccines because they went out of date. If we were taking from someone who needed and deserved it, then it would never have been an issue. Never have I wished we were over 60 but now I did haha!! 

Our berthing contract finished on April 30th. We had to make a decision on what we were going to do. Should we stay until they country bought down the age eligibility (this they were slowly doing). The marina offered us a very good price until the end of May but we decided that we would leave and attempt to get the vaccine in Syracusa, which was on our plan to visit again. 

We left the marina on May 10th heading for Syracusa. The weather was stunning, the sea a bit confused outside of the marina and Gus was sick a few times but we had started our Summer 2021 cruising journey. 

We have no idea what the summer is going to hit us with but whatever happens, we took the decision that we would face it when and if it happened. 

We arrived in Syracusa Bay and there was another berth holder Safari from MDR there too, who also was after the vaccine. We decided we would go together early the following morning. When we arrived, again there was hardly anyone in the queue. A very polite policeman realised we weren't Italian and helped us with some paperwork and where to go. At last, someone was helping us. 

We waited about an hour and the only reason for this was that we had come from Ragusa. There was strictly no movement allowed between provinces and they couldn't understand why we weren't having it done in Ragusa. Eventually they decided to allow us the Pfizer vaccine. I can't explain the feeling of pure joy at being able to have a vaccination. We were the only people in the queue who were smiling and laughing. We were also given a date for our 2nd jab there and then. We will return on 18th June to complete this vaccination. 

There is also a green-card system within Europe, that once you've had both jabs you can apply for the card and use this to cross borders. Quite how easy this will be remains to be seen and only certain countries are a part of the scheme. 

We are now in the Aoelian Islands as we have 4 weeks before our 2nd jab. The weather is lovely, the water cold but life is good again. We are almost fully vaccinated and whilst I realise we could have another wave of this awful pandemic, life is for living and we will do that as safely as we can.  What would make our summer is if our family can come out and visit us this year but whatever happens, we will enjoy it and make the most of it 😀