Author: maryrush.reflexology@yahoo.com

Today I popped in after some reflexology working. Mum looks so tired, Dad does too but in a different way. More of a staring around but not looking at anything. Mum is just very tired. Dad doesn’t have a sleeping pattern, and will often wake her up in the night to ask what should they be doing.

“sleeping” as an answer doesn’t always work, he often need convincing that its not getting up time.

They had just finished dinner and were putting their feet up, so I came at the right time to make them a cup of tea. Dad has decided he doesn’t like apple juice, “it makes his tummy hurt, tea is much better”

I then had to ring round to try and work out the complicated payment system that the county Council has for the day care. They do seem to like to make life for carers even for stressful and complicated!

The main task after that was to make sure the hedgehogs and birds had enough food, and get some logs in for the all important fire. This meant Dad had to get his coat on, and we know how long that can take.

“put your coat on Dad”

“were are we going, are we going to respite, I don’t want to go there”

The Respite care still are closed due to covid. They are waiting for official confirmation that they can open. Mum is very tired, did I say that before?

“We are going to see the hedgehogs and birds Dad, get your coat on”

We get one arm in, then fish about in the air for the other arm hole. He gets his warm gloves out of his pocket and gets them on no problem. However need the gardening gloves to change the bird food.

“Dad take you gloves off, you need the other gloves”

“What gloves?”

“take those gloves of and put them in your pocket, you need the other gloves”

He puts his hands in his pockets and finds a hat, which he puts on. It takes more encouragement to change to the mucky gloves. It would be so much easier to pull them off him and replace with the bird changing gloves!

As we go outside he is still worrying about going to respite.

“are we going in the car?”

“No Dad we are looking to see if the hedgehogs need water, look they have drank all the water and eaten all the food.”

We give them new food and water, add more seed to the bird table, refill the feeders. I then try to get him to move logs from the shed into the house. This use to be one of his favourite things. The fire still is. It has to be burning, even when we had that hot spell last week (remember that it might be the last we get!). I manage a few trips of log filling and the Dad decides it must be cup of tea time.

As I leave, Dad says

“sorry I not good, but I want to do my jigsaw now!”

I love my Daddy.

01/04/22 Dads family dementia adventure.

In the last 2 weeks Dad has had most of his family visit him. My sister, his brother and sister have all been to say hello at different times. I think all at once would be very confusing for him.

Vascular Dementia being very different from Alzheimer’s, As Vascular dementia is caused by reduced blood supply to the brain due to diseased blood vessels. Its the death of these brain cells that causes memory and other cognitive loss. Dad doesn’t really remember the past, there is mainly for him the here and now. This can make family visits tricky. Until Dad has a memory pop up its best to talk about the moment, how is the fire, can you see any birds, do you want a cup of tea. He has also lost a great deal of empathy, so he doesn’t show if he is happy or not at seeing you. In fact he shows more emotion over a cup of tea than seeing me or Mum.

My sister came first, last weekend. It took Dad a few minutes to recognise her. After that they had a great day, doing jigsaws together. We all had a meal from the Old Bowling Green too.

Dads older bother came last Tuesday. It took a bit of time to convince Dad that he had a brother! We all went to Wirksworth Market for shopping. Thanks to all the market stall holders for giving Dad time to talk to them and wander round safely. He spoke to a friend who he played boules with, its great when people Dad knew come up to him, introduce themselves to him. Dad always was a chatty person, liking to meet new people, and now everyone he meets are new to him!

The Wirksworth family day out was finished with a fabulous lunch from The Sour Cow. We now know that Dad likes fried halloumi cheese.

My Aunt and Uncle, Dads sister, came on Tuesday. Everyone wants to see Wirksworth Market! They stayed in a lovely holiday cottage in the village. Lots of sister and brother jigsaws were completed. Dad remembers Woodbind villa in Nottingham where his sister and he grew up. Wednesday evening I made a Chicken dinner. Dad excitedly introduced me to his sister.

“Have you met before, Do you know each other” he asks, being slightly amazed that we have actually met before this day. He has a Glass of red wine too.

The next evening we all go to the Miners Standard at the top of Winster. I am very grateful to the staff there who held Dads hands and helped us in and out of the pub. He was very unsure about where he was and how to get down the steps. This is a big change, having to hold both Dads hands and encourage him forward in places that he can’t remember. He has been drinking in the Miners Standard for over 40 years! So a big thank you to the Miners Standard.

I do remember reading somewhere in all the overwhelming information that support groups give you that even if your loved one does not recall your name or seem to respond to you, they often do recollect how you made them feel emotionally, that you did have a strong emotional bond, and that calms them down and helps them to feel loved and secure.

So even if Dad doesn’t seem to relate you, on an sentimental level he loves to be with people, especially those who he has friendships with.

28/03/22 Boule practice adventuring.

I am tired, Mum is tired. The respite home is closed due to covid outbreaks, with no real idea of when Dad can go back. So no showering in peace, no reflexology for Mum since Dad thinks that if Mum closes her eyes she might be dead. Keep going.

Dad is getting worse by the day too. It took him a while to work out how to put his gloves on today. The word motif on the gloves go on the top of the hand, and I make sure he has the right glove for the correct hand. Somehow he turns his hand around so the words are underneath, the thumb is in the wrong place, so he swaps hands, turns the gloves to face the correct way up, and then can’t work out were the thumb goes. We try again. This time we have

“lost a finger”

or rather have two fingers in the same finger space. Try again!

On Sunday we have a boule practice at the Bowling Green. He was captain, has played, and won in France. Been on the Derbyshire Dales boule league committee. And can play fairly well too. He is not sure. Firstly we were going to walk.

“its a long way, am I not walking”

So we go in the car. Shoes on, Coat on, Gloves on, Hat on. We get down to the car.

“I want to go to the toilet”

Reverse the process and start again!

You can’t be in a hurry to go anywhere, may as well enjoy the sunshine.

The Bowling Green we get the boule out, settle Dad on a chair with a blanket. Try him on a bitter shandy. He is not sure about that. As his anxiety tablet starts to work, he relaxes and remembers that he use to play. Maybe he could have a go. He needs encouragement to stand on the round mat. He holds the boule expertly, and reads where he had engraved his name on the boules. Eventually he had a go. A bit shaky, but then it is our first go for about 2 years!

Thanks Team for helping and letting us join in!

He gets into the games, clapping if someone has a good shot. Every now and again he has a go. Then he want to know when we are going home. For those who have played against Mum, you will be glad to know that she won both her games, and is planning to try and get to league matches at home, Dad permitting. Dad might watch, or he might be doing more important things like jigsaws.

Adventures with a “off Duty” mind.

Its been a while since I wrote anything, I am sure you will agree its been a scary and crazy few weeks. Dad has visited Eastern Europe many times, we don’t think he has very quite made it to Ukraine. However Poland, Lithuania, Romania and I think Solvina were all walking destinations. Mum and Dad even got a foot into Belarus! We were on holiday in Poland near the Białowieża Forest World Heritage site, on the border between Poland and Belarus. Mum and Dad decided to have a walk along a track, they knew they were near the boarder and did have a good map. After a while of seeing no one, a soldier with a large gun suddenly appeared from no where, spoke to them in what they though was Russian, pointed at them and then the footpath with his gun. He was making it very clear they were to turn around and go back, very quickly, the way they came!

On the same holiday we were staying at a hotel/hostel that had a large bus group coming, the owners of the hotel were very, very apologetic as we had to move out. However they have found us this lovely family to stay with. It was a large family of at least 3 generations. Water coming from a well in the garden. We had a fabulous few days there, Anna the daughter spoke so many languages and she took us to many places in the area that we would have never of found otherwise.

Dad kept in contact. He organised many walking holidays with Anna as guide and translator. We were also able to repay her hospitably when she and her husband came to visit Britain.

Mum as had to be very careful with watching the TV. We are not sure that he knows what’s happening. Only once has he asked

“Are we safe here”

and he has once put his shoes on for no really reason and wandered round the house.

We have been keeping Dad busy with his favourite things, ice cream and cake, tea, and fire, with the occasional jigsaw too.

Over half term we had lunch at the blue lagoon café at the stone centre. To earn his sandwiches we walked Dad along the trail to the first incline. For a Man that has lead walks all over Europe, this walk seems like the hardest yet! He held my hand for most of the way, mumbling away to himself. This mumbling is new, having listened very carefully, it is just mumbling, he seems content enough. It was on the walk that he told me that his

“head isn’t working properly, its gone off duty”

“Thats OK Dad, my head is on duty so we are able to go to the café.”

He seemed happy with that so we went to the stone centre blue lagoon café. It was nicely busy, and Dad had lots to take in and watch. When the surrounding are noisy, Dad tends to go quiet. There is a big link between deafness and dementia, and Dads hearing has certainty got worse too. Worrying about his hearing aids has become a hobby, Mum and I have had to learn how to change the batteries and clean the aids out. However you could see his pale blue eyes darting about looking at everything and everyone.

The food came, we learnt that hot pork sandwiches are too chewy. Swallowing for vascular dementia suffers can become problematic, so we do have to be careful to make foods easy, there may come a time when we need to mash everything. Dad does like cheese and onion though, after a swap round of orders everyone was happy.

After eating, Dad started another one of his past times, sign reading. Walking can take a while sometimes, if we have to read every poster and sign Dad passes. This time it was posters and then the toilet sign. That created a problem. Toilet trips are eventful, and sometimes a bit tricky. Mum and I had to work out if he had just read the sign, and then toilet was in his mind, or if we had a situation. Since my house is only 5 minutes walk away (or 10 mins at Dad pace) Dad decided he would rather go to my loo!

Last weekend I made Sunday roast lamb dinner, again we made Dad deserve his food, by having a walk to Steeple Grange light railway.

 Dad is looking forward to being able to have a ride on the locomotives again.

Mondays are Mums massage days with in Cromford. Dad couldn’t go to his daycentre this week because they have had a covid positive test. This meant that I had to look after Dad without Mum, this is always difficult and involving lots of anxiety.

I dropped Mum off, Dad and I watched from the car as she disappeared into the treatment room. He was not sure about this. I had planned having an ice cream and duck feeding down at Cromford Canal to distract him. I think this worked for about 10 minutes. The ice cream was popular with Dad. Not much to worry about

“Do we have money to pay for this”

“yes Dad look I have the money”

“is that enough?”

“Yes”

“Are you sure?”

I got the blanket out of the car, Dad got ice cream everywhere. The ducks got fed mealy worms, then the questions about Mum started.

“is she on her own? Where is she? Will she be alright? Has she got her car? What if she gets lost? Where is she? Can we go to find her now? How will she find us? Has she got a car?”

The worry and questions go on and on and on.

I try a walk to the big tree, and we have to pass a notice board which involves reading all the posters.

The questions start again, including the

“She is my wife you know.” and the “please can we go to find her”

In the end we just have to get back in the car. We are early and it is all I can do to keep Dad in the car and stop him from knocking on random doors to find her! He is so anxious that he doesn’t notice that she has appeared until she opens the car door. Then, its like a miracle, all worry and questions stop. He is happily telling her about the ice cream and ducks and canal

We Have had many trips to Winster shop and Wirksworth Tuesday Market too. As long as we don’t watch the news, life might be exhausting for everyone else, but Dad is happy.

Looking back on this wet and windy week, Dad has got significantly worse in his dementia journey. He is still happy and a lovely Daddy to go and chill with.

On Monday I picked dad up from his respite care today. This gave poor Mum time to sort out washing before her lovely little shadow came back. We are not allowed in to the respite centre due to covid. I peered through the window to see what he was up to. He was in a chair with his back to the window which meant he couldn’t see me, but I could clearly see his picture bingo card. The fabulous activities lady was carefully going round the group making sure each participate crossed of the right picture in the bingo game. Dad however, was happily drawing round each and every picture and completely ignoring the prompting. Eventually she gave up, well he is happy enough drawing round and round.

Dad came of the centre a carers hand, he needs to be lead anywhere now. He checked it was me and not Mum a couple of times. Then we had to discuss if we were going to Wirksworth or Winster, since he couldn’t remember the names of Wirksworth or even Winster it was a difficult conversation to understand what he was confused about.

On arriving at his home in Winster he was unwilling to empty his pockets. After removing gloves and a hat he stopped rummaged a bit in other pockets making a great show of it too. “Nothing else” he said. Now I knew the care home had given him chocolates. I went into his cardigan pocket.

“Hey that’s my pocket”

“Dad what’s this in them”

“Oh yes. Its stuff. With a message.”

The care home had added a message to a bag of chocolates.

“Can you read it Dad”

Dad reads

“Happy valentine’s day Frank. We all love you very much”

Dad struggled with valentine’s. He then said

“Thats nice isn’t it. They nice there.”

Thankyou to the respite care. He kept looking at the card and reading it over and over again.

Tuesday is Wirksworth market day. However it was raining hard. Dad peered out of the window, shock his head and settled down back in his chair next to the fire. Since Mum and I were very tired, we decided this was an excellent idea. I came over later that morning.

As it was still raining I used the time to ring various organisations that were suppose to be supporting Dads care. We needed to get Dads payment card so we can pay for his respite. This was to be sorted by last Christmas. I never got through to the person in charge of this. One wrong number given to me and the other kept saying the phone was busy, on answering phone option available.

Another person to call because Mum was supposed to have had a carers assessment that had been referred to the Derbyshire cares association over 3 weeks ago. I rang Derbyshire Cares Association, they knew nothing of this referral that the Mental health team should had made. This was a bit disappointing, who is caring for our carers! I did manage to make the carers assessment appointment. It is a TELEPHONE appointment in March. Not quiet sure how you can do an assessment over the phone, especially when Mum is on the phone Dad gets very anxious and will start to panic, often taking the phone from Mums hands. It will be and interesting assessment.

I also tried to speak to Dads care worker/social worker. I left a message.

The rain eventually stopped and we all wandered up the street to the post box and shop. I love our village. People stop and say hello to Dad. They introduce themselves, even though Dad has lived in Winster for 40 odd years. He might not stop to talk much but he really appreciates it, as do we.

Thankyou very much Winster people.

After our shopping trip Dad and I got logs in and refilled the bird food. This being the most important thing to Dad, except ice creams on sticks, and Mum of course. Mum had to rest her poor back. Its a long way to the shop!

We then had chair yoga via zoom organised by Derbyshire carers association. Well Mum had chair yoga, I had entertain Dad. Dad and I did a bit of yoga breathing. Then a bit of yoga waving arms around. The Dad decided lunch was more important.

Wednesday we tried going to the Blue Lagoon at the stone centre for lunch, but it was busy. I magicked up corn-beef sandwiches instead.

On thursday I think my telephoning had reached someone. We got lots of letters which don’t make sense in the post. Its a bit disheartening when they can’t even spell Mums name right.

The week ended today with us all surviving the storms so far! We had Sunday lunch together.

Dad had a present from my sister, his younger daughter too. It was a magnet set. Dad had been an armature rewinder for most of his life, he knew a lot about north and south and magnet attraction, how electricity can be made from magnets. Watching him play with these, feel the magnetic pressure but not understand what it was, well it was a bit upsetting. Mum had to have a moment. Dad however was fascinated by them in his own little way.

The dementia journey has its ups and downs. Its always a little surprising. What makes you cry and what makes you smile. Navigating the care system is another story in itself!

Its been a year now since Mum and Dad had there first covid jab. Dad has changed greatly over the span of this year, but in many ways he is still Dad. He dementia is slowly getting worse. We are fortunate that he is lovely, not aggressive or violent. Instead he is very anxious and forgetful. Its little things that remind you how much the dementia has progressed, like when Mum asks him to put the hot water bottle away, he can find the hot water bottle, but then will hold it for a bit, look at it, then replace it back on the table.

Another day he came round to mine. Sitting on the settee he spend a good 10 minutes looking first at the floor and then at the ceiling, head moving up and down. When we asked what he was looking at he replied

” we have a ceiling like that too!”

Then you get moments like Nottingham comes on the TV.

“Look that’s Trent Bridge “

His sense of humour also shines through. He can’t get his gloves on now, so he sticks out his hands and one of us puts them on. Mum and I were both doing this in order to get to the village shop. Because the two of us was helping Dad, he ended up turning 360 degrees round.

“ I am not a screwdriver you know” is what he said.

All the way to Winster shop he is asking me

“Do you know what we are doing?”

“Yes we are going to the post office then we are going to buy bread, bacon and tar tar source.”

We walk for a minute.

“Do you know what we are doing?”

“Yes we are going to the post office then we are going to buy bread, bacon and tar tar source.”

This is repeated all the way there.

Another day this week Mum wanted a shower, however Dad now can’t be left on his own at all, and this means in a room on his own. He gets anxious and will stand outside the bathroom door asking if she is ok, what should he do. Usually I can come round to take Dad for a walk or do a jigsaw, but today I couldn’t so she gave him a proscribed anxiety tablet. Normally he has half. Well this meant Mum could shower peaceful while dad watch trains on the TV. However it also made him very sleepy. So sleepy that he spilled his drink everywhere! Simple everyday activities are now becoming difficult.

For lunch Wednesday I took them both down to tall trees garden centre. The route is the same way as Dads respite care place. All the way down the hill he is going

“We aren’t going to that place are we”

“Please don’t go to that place”

“I don’t really want to go to Ludlow.” We don’t know why he calls it ludlow. And we can’t work out why he doesn’t want to go. We are not allowed in due to covid. The lovely care works do wear masks, and they test Dad before he can mingle. We know they look after him very well, they do exercises and games, dominoes, scrabble and throwing games along with arty activities. Then they feed him lots. He only stopped worrying about it when we turned right to the garden centre instead of left.

At the garden centre I take his hand while Mum hobbles behind with her two sticks. We now need to hold his hand if we actually want to get anywhere at all. We go into the garden centre and Mum finds friends to talk to. I try to get Dad to leave Mum to talk without her little shadow. He is not sure about this, what happens if she can’t find us. We wander over to the café and stand waiting to be seated. I can feel Dads hand tighten nervously round my hand and he is gazing where he last saw Mum. All the time asking

“Where is she? Do you think she will find us?”

I try to distract him by talking about tea and cake that we might have. That backfires a bit, because then he worries about who will pay for it. We get seated just as Mum comes into view, Dad wouldn’t sit down until Mum was in the cafe and sat down first.

We then had another spell of looking at the ceiling. This time, however, it was through glass. Dad watched the clouds and the sky for a time and then stated

“The sky is expanding you know!”

He did enjoy his toasted tea cake and half a scone, even though he had never had one before.

Tuesday was market Dad. I managed to park in Wirksworth. I took Dads hand to move him towards the market. Dad asked me excitedly

“if I had seen “It” on the thing.”

I had to work this one out. what was it I was supposed to have seen, and what was the thing?! Since Dad kept repeating the words I got no more clues, except I did have my phone in my hand. Maybe this was the thing. Dad sort of knows about social media. I think he believes some of Mums friends live in the computer. I also think he is posing for photos because he knows vaguely that we can show them to daughters and sisters and other people.

So I had the thing, just to work out what I was supposed to have seen on there.

Then next clue was that he started to talk about how important and wonderful Mum was. How much he loved her. This reminded me that Mum had be told the night before that she had to take a picture and put it on the thing.

The day before Dad had a few hours in respite care. One of the activities was colouring in a valentine’s picture. The idea being that the following week they add it to a card. Dad was so pleased with being able to do something for Mum, he insisted on bringing it home straight away. Getting Mum to show his daughter’s and sister. And then making sure I had seen it too. He wasn’t happy until I got the picture of his colouring in up on my phone. He then told me how lovely and wonderful and important Mum was, adding “sorry but she is more lovely than you, hope you don’t mind”

It might have had its difficult times, stressful and emotionally hard time, But Dad is lovely and wonderful. Each week is a bit different. Thinking ahead can be scary too. But there is a great deal of love left.

This weekend is the weekend my sister and I affectionately called the “drunken daddy’s weekend”.

It is a time when a group of Dads childhood friends came together every year to just be mates together camping, climbing, walking and drinking.

It started when Dad and Mum got married. Dad and his oldest school friend, David, wanted to have a weekend with all their bloke friends to be able to go camping, climbing, walking and drinking without their wives. That is why the first weekend in February was chosen way back in the 1970’s. No sensible female would want to go camping in February! I have vague memories of all these men coming to the house in Winster on the Sunday morning for a full English breakfast, before they all went on their way home. Since then they have met up for this mad camping weekend, without missing one. Even in lockdown the camp was help via teams.

The group has grown over the 30 odd years since its conception to include other friends, sons, sons friends and even grandsons.

David died tragically in a car crash when Dad was 40. It changed so many people’s lives and the February camp took on extra importance. They realised how short life can be and how important each other was for them. Friendship is so importance, and easily can be forgotten in the hustle and bustle of life. So if you have a friend you haven’t spoken to in a while, ring them, text them pop round and say hello.  I have arranged to meet up next week with my school friends, we are going to swap Christmas presents!

This is the first year Dad has missed the camp. He did the lockdown teams one, which is what the photo here shows, a fire, a classic Feb. camp activity.

Now he just does not remember who the people are, and why you would want to leave the warm stove in the cosy house to go outside the the heavy rain. We did try to encourage him to meet up with the group in Hartington. He wanted to put more logs on the fire and do a jigsaw.

Mum and I got some old photo albums out, even pictures didn’t seem to stir any interest. He was happy to do the jigsaw puzzle, and a cuppa and a chocolate biscuit.

Its strange, and a bit difficult, to know they are out their in the rain, and Dad doesn’t remember. I have all these fragmented childhood memories that I can’t ask him about.  Stories about eating daffodil bulbs, big fires, people falling to sleep in pubs, tumbling into rivers, passing pipes around, rugby watching, walking and digging tents out of snow.  Not that any of them lets on what happens at February camp.  It did make in into the Telegraph too, Why I go camping in the snow.

Dad has had a good weekend, with a trip to Cromford mill, bought some wool at weaveknitit and Then Sunday lunch at my house. Coming from his house to my house seems to get longer and longer for Dad. He was convinced it would take Mum an hour to get here. So they timed it, 16mins.

They came for Sunday dinner armed with a German bottle of wine from which Dad has often visited with winster morris. He was worried that it was wine and not milk for cups of tea, but then he seemed very interested in what the wine might taste like and if he would like it.

He then whittled about the bottle of wine he had given me, had I got it, can we drink it, do we have more.

He was concerned on how far Cromford was from my house.

“It must be miles and miles? Have we got time to go?”

“Dad it will take us 5 minutes”

“Are you sure?”

“Yes, shall we time it?”

“What time is it really?” He looks at his watch. He is not sure what time it is now. We work out which hand is the minute hand. I tell him the time and we set off, Dad is watching his wrist watch very carefully. He is very surprised to find it actually takes 4 minutes.

Dad remembers coming here before. He decides to walk up to the aqueduct and over the bridge. He activates the cog system and the pulleys. He talks about the waterwheels, but doesn’t remember undershot and overshot.

He then whittled about the bottle of wine he had given me, had I got it, can we drink it, do we have more. Maybe we should go home to check that it is there.

I go to buy some lovely yarn from weaveknitit, while Mum is with Dad looking at the water. Dad is confused that I have gone missing. Mum has to go into the shop to make sure I am still there. He peers over a stand of wool to find me.

“Hello”

An old neighbour of Dads, from the house I grew up in, has the bookshop in the mill. Dad does remember him from last time we came to his bookshop to get some Christmas presents, but does not remember that he was his neighbour back in Winster for a number of years.

Mum has a chat in the bookshop while Dad and I wander back to the car. Dad worries where Mum is.

“She is the oldest you know”

“Dad she is 5 years younger than you”

“Are you sure?”

“Yes Dad”, I ask how old was I, maybe a dangerous question. He answers by adding 10 whole years onto my age! His age is approximately 30 years younger than it really is.

Mum appears from the bookshop.

“look there she is with two handles” says Dad in relief, I have to check what he means by handles, he is referring to her two walking sticks, you do have to be able to interpretative Dads words sometimes!

We come home for a cuppa, and a rest.

I get the bottle of wine he has been talking about all day to show him that we have got it and that we could open it if he wanted to try it.

He checks out the label. He reads the bit warning against drinking and driving.

“Well that’s sensible advice. How can you drink with a wine glass in your hand while driving, you will spill all the wine.”

Looking at the pictures of the German visit dad saw the same bottle of wine that he had bought.

“Look you have 2 now, so I can have one back.”

He wasn’t convince that having a bottle of wine in a picture was different from having one on the table in front of you.

My husbands Mum and uncle came. We have a lamb roast sunday dinner with red wine too! Cheesecake for afters. And a game of Pass the Pig.

Dad decided it was time to go by 3.30. His hand started to wring together anxiously. He was distracted by lighting the fire. His gas lighter is better than ours

A cuppa stretched it out a bit too. By 4.30 he was desperate to get home. So off they went.

Life can be full of laughs if you just take the time and patience to enjoy it.