Living with Alzheimers – We Are Best Friends by Chris Suich

Today, as I do three times a week, I visited my lovely husband Bob who has been in care since 10th March 2020 with the devastating illness Alzheimer’s.

It is amazing that he is still with us as he was not expected to live beyond last Christmas 2021 – according to our local GP who saw him after the first bout of Covid 19.

He is poorly there is no doubting that. He cannot walk or do anything for himself, even holding a chocolate button or a birthday card is beyond his cognition now. Recently it was our 43rd wedding anniversary. I took him a card that had a picture of two teddies in a car, I thought he might understand. Probably not.

However, he tries hard to communicate with me, chitter chattering nonsensical words, turning his head, looking at me directly and smiling. The love is still there for me and I see it in his eyes and mannerisms, and occasionally he speaks a phrase that makes sense, or he tries to sit up and puts his lips together for a kiss. For my part I still have him. I can kiss him and hold his hand. I can tell him my news and ring our sons and they talk to him when they can. He says ‘ Hello’ and he kisses the phone. I know he recognises their voices. They are wonderfully kind and patient but also brave and full of humanity. I am proud of the way they handle it all.

Today he is sat up in a Stirling chair (nice and deep and tipped slightly backwards so he can’t fall forwards), dressed nicely, shaved and clean, looking at the TV. He likes Tipping Point as he likes the bit where the coins drop down, and as he was brilliant with numbers in his past life he will read out the amounts the contestants win. Then it is The Chase. I tell him he is on my team and I try to answer the questions and he watches the red writing turn to green writing if I get it right.

The carers are kind and I know they make more effort when I come in. I insist they get him up as he likes to sit upright in a chair and I think is is better for his digestion. No one wants to lay in bed all day and he is not any different.

I take him the food we enjoyed together. He knows it. He looks for the red carrier bag with pictures of Parisian cartoons on we bought together in Paris. I like to think it evokes some happy memories of our time together. That and the food.  Maybe somewhere deep inside him he’ll associate the food with me. Sometimes I get a positive clue that this is the case. But in any case I am satisfied that he is enjoying the food and relishing every mouthful. He eats everything we would normally eat, apart from chewy meat or stringy chicken as he doesn’t like the texture. Or the sloppy food which is sometimes given by the home. I feed him from a teaspoon as he opens his mouth a little. He is used to a beaker and the home gives him fortified drinks to keep his weight up.

It takes a little while to get him going with a spoon, but once he gets the taste of the food he opens his mouth wide and as he has all his own teeth he chews well and swallows fine.  Today it is Lincolnshire sausages, two chopped, onion gravy, parsnips and broccoli and mash. Then chopped mince pies and extra thick cream blobs. It only takes me 30 mins and the swallowing is interspersed with ‘ lovely’. I have had a little victory with the food situation.

I couldn’t understand why he was on a semi-soft diet when he ate my food so magnificently. Once he pouched his food in one cheek with me and also with a carer but that was because he didn’t like the chewiness the stringy consistency but he never did it again. Not enough evidence I thought for giving him the sloppy soft diet daily that he clearly didn’t enjoy. I asked for a speech and language Dysphagia assessment as if these professionals thought the same then I would agree with it. However, Bob did not meet the criteria for a dysphagia assessment so therefore I reasoned he could still eat the chopped normal food. That is now supposed to  happen whether I’m present or not! Bob also has a beer, or some wine and on Sundays a tot of port. Everything I would normally give him at home. Why not?

After this nutrition he will often say something. ‘ Are you alright for money?’ or ‘Be careful’ or sadly ‘ Let’s go home’

I play a range of our favourite music and music videos I’ve downloaded onto my iPad for him to watch. He loves these. I show him ELO Mr Blue Sky, Telephone Line, Wild West Hero and several Beatles black and white films with music tracks. I have a great playlist now and Bob enjoys it. I see the light switch on behind his eyes and his fingers and toes twitch. He becomes relaxed and content. I know it makes a difference. It makes him feel better and it is good for his well being. I don’t like to think of him on his own laid in bed with limited interaction. But I know the carers are busy, and Bob is easier to manage in bed as many residents can walk and are more difficult to keep occupied and safe. But all residents need to have their well being addressed and music is game changing.

Emotionally for me it is a roller coaster. I hate to see him struggling to communicate getting frustrated, pulling at his hair, trying to explain. ‘It’s horrible!’ he says. I hate it when he says ‘Let’s go together’ or ‘Is it time to go home?’

I still look forward to seeing him and he is always in my mind even though I try to fill my life with being busy. I have my Inner Wheel and Rotary endeavours to take part in. I volunteer at a local school weekly and have a wide range of friends to see regularly. I dread a phone call from the care home in case it is some bad news and my stomach lurches when I see who is ringing me on the phone. Sleeping all night is difficult as Bob comes back to me in the middle of the night. I have tried to get on with my own things in the day but at night he is in my unconscious brain. I remember the little things we did together, often long forgotten. I am probably more anxious as Bob smoothed out all my worries. He was a good match for me.

It almost makes me cry nowadays, when he tells me ‘You’re lovely’ or ‘ I’m sorry’. I tell him everything is fine and not to worry and that he’s lovely too. He sometimes is sad and downcast and I have a job to get him to respond to me but he usually does in the end.

Sadly he doesn’t know I’m his wife but thinks I’m his best friend.

That is ok we are best friends.

 

The stylish, must-have essential for parents – Stokke Limas Carriers

Getting around as a parent can be hard, if not impossible. In fact, even doing things around your house can be hard with a baby. This is why I could not live without a baby sling. I have tried many over the years so I thought I would review the Stokke Limas Carriers.

Stokke® Limas™ Carrier,

Stokke® Limas™ Carrier, Espresso Brown.

Featuring three hero products, Stokke® Limas™ Carrier, Stokke® Limas™ Carrier Plus and Stokke® Limas™ Carrier Flex, the range delivers stylish, must-have essentials that allow parents and caregivers to go completely hands-free when on the go or at home with their baby. Helping to facilitate closeness and bonding as well as providing optimal comfort and support from birth and beyond, the carriers enable both parent and child to grow confident together, every step of the way.

Not only does the new collection adjust to accommodate infants, but it supports the child’s physical and physiological development along the way. The carrier expands as your baby grows, to support the growth of the hips, spinal column and muscles; as well as providing them with a whole new sensory experience, helping to stimulate the brain.

I found the Stokke Limas Carrier to be comfortable and stylish. It looks great and is easy-to-use. Highly recommended. 

“I would wet myself in fear”: Mum reveals terrifying abusive childhood and vows to ‘end shouting’

Shouting is still controversial, but recent studies show the impact of shouting at children can be ‘just as harmful as hitting them’
abusive, childhood, shouting, www.LETSTOPSHOUTING.com, , anxiety, end shouting, shouting

After becoming a parent, qualified therapist Yasmin Shaheen-Jaffar decided it was finally time to break the “historical pattern” of abuse she had suffered as a child, rendering her “anxiety-ridden” in adulthood.

“Shouting can trigger violence. I was shouted at a lot as a child and it often turned into physical abuse. This made me grow up into quite a nervous adult, and also avoidant of conflict which has brought a whole host of issues I’ve had to overcome”.

Children suffering from verbal and physical abuse often develop a low self-esteem and self-image, and a negative worldview. But the consequences aren’t all psychological.

“This is really embarrassing to admit, but when I was shouted at as a child I would be so frightened that I would wet myself. This just caused me even more shame and made me feel like I couldn’t tell anyone. The fear paralysed me”.

When Yasmin became a parent herself, she felt it was important to stop shouting and instead foster a “healthy communicative relationship” with her child so that the pattern would never be repeated again. This decision was reinforced further when she suffered a personal loss.

“Someone very close to me committed suicide a few years ago. It made me realise within all that shouting that so often happens in everyday life – the real issues get buried. I think quite often the shouting ends up being a distraction”.

After committing herself to ending shouting and encouraging “healthy ways to have difficult conversations”, Yasmin launched World Let’s Stop Shouting Day in an effort to share her experience with parents on the effects shouting can have on their children.

“Children model their behaviour on the people around them. It’s not always easy, but if you don’t want your child to turn to shouting as a way of communicating, and everything that comes with it, you need to change your own behaviour first. It can feel impossible at times, but with some work it can be done”.

ABOUT WORLD LET’S STOP SHOUTING DAY

The World Let’s Stop Shouting awareness day’s focus is to open the conversation about the impact of aggressive and angry communication on our relationships and physical and mental health. Shouting, as a form of verbal abuse, can often be a trigger for more violent crimes and there should be greater encouragement for healthy debate.

More info here: www.LETSTOPSHOUTING.com

Living with Alzheimers – Trying to fathom a way forward for a ‘good’ visit by Chris Suich

 

The-dementia-cafe

An ominous feeling came back to me today. Covid is back in the care home. Not in Bob’s wing but still, it seems to be getting closer. I have heard of so many people with it in our market town. I am being ultra careful. PCRs and lateral flows on visiting. I cannot go back to not seeing Bob again. As an Essential Caregiver I should be OK – even with an outbreak, providing I don’t catch it! At least that information is in the government guidance due to Bob being ‘end of life’.

I heard that some staff who have not been vaccinated (as Nov 21 government  direction) have left and I wonder how this will affect the staff ratio. At least I can help Bob when I’m here so they won’t have to worry about feeding him.  I put on the PPE and walk swiftly to his room. 

Bob is very tired today. He is laid in bed comfy and warm. His head has fallen off his pillow and he is lolling over the raised plastic sides of the special ripple bed. 

I kiss his forehead and tell him I am there. ‘Chris is here and I love you very much’ 

He smiles in his sleep and I am content with that. 

I arranged the things I had brought for him. The can of lemonade, the blackcurrant tart and the chocolate buttons. The iPad is already loaded with the music for the afternoon. Fleetwood Mac and The Beatles are the albums for today. I always show him the LP cover. Sometimes he reads the title and the group. I wonder if he can remember something of the design. These LP covers were so well thumbed by Bob in the 70s and 80s.

I start the music softly even though Bob is asleep because I think he might hear it and wake a little. I am struck by the beauty of the lyrics of Songbird.

Apparently McVeigh wrote it about the self sacrifice of love and about how much love the band members had shared together over many years. I too feel that sentiment  in the quietness of Bob’s almost stark room; an enormity of love for him. For everything we have shared together, a whole lifetime of experiences and good times. I know he is on his final journey and he is leaving me a little more each time.

He tries so hard to get back to me, and I still valiantly try to stir a memory, however faint. His furrowed brow, his look of bewilderment are etched on his face regularly now. He will put his hands to his head and will shout nonsensical words and sometimes pull at his head as though in an insane terrified fever. It must be terrible to try and make sense of something that was once so well known, or have a memory at arm’s length, never to grasp it. It is awful to watch. But he looks very peaceful today. 

Bob a Good Visit

I decide to clean his nails whilst he is asleep as he is sensitive to the slightest touch. He doesn’t resist when he is asleep and the liquid soap and wet ones soon do the job.  

I have decided to chat like I always would even if Bob is asleep or inside himself.  To be normal. To tell him my news and send all the messages from friends and family. I give him a kiss from Joe and a kiss from Eddie, our sons. I tell him I helped out at the sing a long at The Dementia Cafe this week. I tell him they gave me the microphone and I ended up singing at the front. I tell him someone asked me if I was your wife and told me that they had worked with you at Tedder Hall and to give you a hug from them. They said you were a lovely man. But of course I know this! 

After two hours you begin to wake. I sit next to you so that your eyes, when they open, are at my level. ‘ Hello darling it’s Chris and I’ve come to see you’ 

You smile like you know what I’m saying. Well that’s a good start. 

I ask the carers to sit him up as his core strength has gone and he always sleeps on a slant and then gets in an awkward position. The ladies move him onto a pillow and I sit him up on the ripple bed. I put on his glasses and tell him again who I am. He looks vacant and seems to be staring ahead, not really seeing. 

I have a routine and it is familiar to Bob as I do the same thing every visit. 

I tell him I’ve brought him chocolate buttons and he opens his mouth ready for me to put some in. He understood that alright! It gets him in a good mood. 

Then I try to get the drinks down him. He sometimes doesn’t seem to drink much. It takes a long time and patience is needed. I have that. I always see a difference once I get the fluids into him.  I pour the lemonade into a small lipped beaker. It’s a job to make sure I don’t give him too much at a time. Being vigilant I manage two beakers of drink. I try to get 3-4 down him in the 3-4 hrs I stay. He seems to wake a little more. 

‘I’m staying to give you your tea tonight Bob.’ It is mashed potato, carrots, spring greens and meatloaf, all chopped up of course. I have brought in the pudding – blackcurrant tart. I feed Bob with a spoon. He takes a while but today he eats quite well and doesn’t push it back on the spoon. The blackcurrant tart chopped into small pieces is enjoyed but it’s always the puddings that go down well. Recently I’ve taken to making him food from home and he loves that and his mouth opens wide. Pasta and poached salmon are his favourites.

After tea I put on the TV for the 6 pm news. Bob always watched the news. He sometimes says’ Hello’ to the newsreader. But before that it’s Tipping Point which he loves. He likes to see the counters dropping down and he can still read the amounts of money the contestants win. I always give him a commentary of what is happening and he seems to get something positive from it. 

I have learnt that to say ‘I’m going now’ makes him agitated so I now say ‘ I’m going to order you a hot chocolate’. I give him another kiss and leave. He is content.

It has become increasingly difficult to think how to help Bob have a good visit. He is getting so he is unable to respond or understand much nowadays. I have had to come to terms with the fact that perhaps this is a good visit now. This is the best I can expect. 

Occasionally he will say ‘ You’re lovely’ or You’re my best friend’ or if I’m lucky ‘Thank you, I love you’. In some ways that’s harder when he seems to realise, but I’d take those words any day.

New Parenting Book to Get Kids Talking

A new, illustrated, hardboard book has been launched to aid and develop children’s speech.  Published by Little Frog Media, DeeDee and DanDan’s Busy Day is an interactive reading book that has been written by parents of a late talking child.

books to help children with their speech, speech therapy, interactive reading, deedee and dandan's busy day,

Following extensive research into how best to support and encourage their son’s vocabulary, Aneta and Mariusz Wojcik established that reading to their son Daniel was the ultimate way to help, but they still weren’t getting the results they were anticipating.

 

After speaking with a friend who studied English literature, they quickly understood that the problem wasn’t what they were reading but the frequency and how they were reading with their son.  The couple learnt that making a story interactive and engaging for a child assists vocabulary retention and they started tounderstand the importance of word repetition in different, yet similar, sentences.

 

They began to use these methods across a range of recommended books but never came across a publication that allowed them to deliver all they had learnt.  After seeing Daniel’s use of words grow through the techniques they were applying, Aneta and Mariusz decided to write their own book, which encompassed their learnings and knowledge to help other families.

 

Mariusz said: “Our eldest son was a bright two-year-old, but we knew his speech development was behind.  We understand that all children progress at different rates, but we were concerned and knew intervention was needed.  Mywife and I both studied mathematics, so we are natural investigators and wanted to absorb as much knowledge as possible to try to help our son.

 

“As we gained proof that our various techniques were working, we applied the formula and logic to every book we read with Daniel.  There was still a gap in the market though for a book which teaches parents all the elements they need to help aid their child’s speech development – so we decided to write one.

 

“The book gives you everything in one place, so you don’t need to think after a long day.  And with 38 pages and thousands of possibilities, no two reads are the same and the book grows with your child.  It also helps a child to build confidence and start actively asking questions. It is our hope that other families can now benefit from what we learned and, with the help of the book, can overcome any worries while supporting their own child’s speech development.”

‘I loved this book and so did my children. It is so well done and gets children interested. I cannot recommend it enough,’ Catherine Balavage, editor. 

Dee Dee and Dan Dan’s Busy day is priced at £9.99 and is available from Amazon and https://deedeeanddandan.co.uk/.

 

 

How To Wean Your Baby by Charlotte Stirling-Reed Book Review

The easy weaning plan to ensure your baby becomes a happy and adventurous little eater.
How to Wean Your Baby, The step-by-step plan to help your baby love their broccoli as much as their cake ,Hardcover , Charlotte Stirling-Reed , (AuthorWeaning a baby, especially if it is your first, can be hard and scary. You are so worried about getting it right. I wish I had this wonderful book from Charlotte Stirling-Reed years ago. It would have made my life so much easier. It is a step-by-step guide and it starts with vegetables. Not the cliché baby rice.

It has key principles, the basics, milestones and everything else. When it comes to weaning, what is not in this book is not worth knowing. It also has plenty of recipes. Joe Wicks and Ella Mills are fans and so am I. I also love Charlotte’s feeding webinars. Watch one if you can. Essential reading for parents. 

In this beautiful, full-colour book, expert nutritionist Charlotte Stirling-Reed reveals her renowned method that has helped thousands of parents wean their babies confidently.

Based on a vegetable first approach, the perfect way to develop healthy eating habits and to tackle fussy eating before it begins, you’ll be hand-held through the first 30 days of weaning as well as given lots of delicious recipes all the family can enjoy.

Packed with tried and tested tips, as well as the latest evidence-based guidance, How to Wean Your Baby will fully equip and empower you to take this exciting next step.

How to Wean Your Baby is available here

Vogue Williams shares her ‘Must Have’ Baby Products with The Baby Show Live @ Home

Vogue Williams, radio & TV presenter, model and mum shares her must-have parenting products with The Baby Show:

Bouncer

I love the BabyBjörn Bouncer Bliss. We had one of these when we had Theodore and they are brilliant. You can get a toy attachment for it too, so that it can turn into a little activity chair for your baby. We recently got the new Leopard print one for Gigi which I love, but this bouncer will last you through all of your kids as the covers are washable!

 

Buggy

The Bugaboo Fox buggy was the main buggy we got for Theodore and then Gigi used it after she was born. It’s very long lasting and super comfortable, plus you can attach a seat to the back, which is where T sits now!

 

Baby Gym

I always find myself looking for ways to occupy Gigi. We got a gorgeous wooden play gym from Scandiborn and I just think they have the most gorgeous toys for all age groups.

 

Travel steriliser

I use the Avent Travel Steriliser. This steriliser is really compact, you can take it away with you and you can store it away in a cupboard, so there’s no need to have a messy steriliser sitting out.

 

Baby Clothes

In terms of clothing, there are so many baby brands I love, but some of my favourites are Rachel Riley, Pop My Way, MORI, Mini Rodini, Oliver Baby, Mini A Ture and Il Gufo. All of these brands are really good quality, so will stand the test of a messy baby!

 

Muslins

I think aden + anais do the best ones. You will need lots of these, we use them for everything, you can never have too many!

 

Breast Pump

My favourites are the Medela Swing and the Elvie. They are expensive, but have lasted me two babies so far and if we have more I will know I will be able to use them again.

 

High Chair

I really love the Stokke Trip Trap as you can use it from newborn upwards plus it’s easy to clean.

 

Sheets

Snuz do a lovely range of super soft sheets.

 

Moses basket

We got a really beautiful Moses for our sitting room from The Little Green Sheep.

 

The Baby Show Live @ Home takes place from Friday 19 – Sunday 20 June, 2021. For more information visit https://www.thebabyshow.co.uk/live

 

Living with Alzheimer’s – I am an Essential Caregiver by Chris Suich

At last, I’m Bob’s ‘essential care giver’!

It has been a tumultuous battle this year for me and many thousands more up and down the country who have been desperately fighting to see their loved ones in care homes for a year and more. Our loved one’s mental health and well-being have not being considered; the laws that are there to protect the vulnerable have been ignored. I was reading recently that there is a catastrophic hidden cost of Covid because many dementia sufferers have simply given up, refused food, and died because they do not understand why their loved ones have stopped coming to see them. Despair and loneliness the silent killer.
My husband went into care just a week before the first lockdown when there was no vaccine and limited knowledge about how to halt this pandemic’s spread. I understood why I wasn’t allowed in and resorted to waving from the road or at the window with the British spirit of ‘ stiff upper lip’ and put my own agonies aside as this terrible Covid 19 meant we all had sacrifices to make. I was kept away, not able to hold his hands –even outside in the summer when the R rate was low, even though I was willing to wear PPE and do anything else required.  Then he caught Covid inside the home but fought and got better from it. This was devastating and the site was closed – all window visits stopped and I heard nothing for two months until I begged the GP to check on him.

Today we are in a very different position; so it makes no sense why some care homes cannot follow the latest government guidance of April 2021 and allow indoor visits mitigating risk, using lateral flow tests and PPE for all care homes everywhere.

For my part, I have been well supported by the founders of John’s Campaign – Julia Jones and Nicci Gerrard, as well as Leigh and Day solicitors and Rights for Residents founders Diane Mayhew and Jenny Morrison. Their steadfast advice and ability to cut through the legislation to make it clear and understandable has been invaluable. The publicity they have commanded on media, TV and radio raising the profile of care home visiting and the articulate way Jenny spoke to the Harriet Harman  select committee recently has been both humbling and a cause for jubilation. She spoke for me and for everyone.

I did everything I could to try to persuade the manager to let me in. I explained about ‘end of life’ being 6-12 months not just imminent death. The guidance states this and also that visits should be facilitated. But to be brutally honest, it wasn’t until we sought legal advice and sent a letter that a meeting with the Regional manager was organised which resulted in making me an essential care giver. In addition, Joe, our eldest son has been made a  designated visitor when he can get freed up from his shifts in the hospital. There is a very detailed personalised risk assessment. I have PCR test and a  lateral flow with the carers and home staff weekly and another lateral flow test every time I visit. It is a small inconvenience. I can now see my Bob for two whole hours twice a week in his room. I am ecstatic.

Much has changed. He doesn’t ask to hold my hand anymore he’s forgotten how to hold hands. I still hold his though and stroke his hands and face. He doesn’t know who I am anymore but he knows I’m ‘lovely’. He rarely understands but he seems content and searches my face and loves it when I smile. I play him lots of music. The tracks from his youth. The bands he actually booked when he was President of the Entertainment Committee whilst at Sheffield University in the 70s. Our youngest son still in Australia has suggested a playlist.
I try to keep to a routine. He likes a hot chocolate and I feed it to him at 3 pm in a beaker every time I visit. I give him chocolate buttons on his tongue. I always play ‘Oblah  Dee Oblah dah’ and he has started to la la la which I’m thrilled  about. I think he’s happy when I’m there, he chitter chats in a completely non-sensical way but I go along with it all. I’m trying to get a little bit back from him and I’m succeeding. He looks better and is not so agitated. He lets me put his cardigan on without a fight and brush his teeth with a soft brush. He does still call out randomly and hallucinate but generally he’s content. I too am content. I can check he’s clean, his room is kept nice and he’s as healthy as can be expected. The carers are kind and courteous to me. I thank them. They cannot fail to see the bond between us. He’s still there deep inside and he does come back to me a little every visit.
So today I had another visit and it does us both good. I left him wrapped in the memory blanket with the pictures of our family on it.
I am very lucky to have this precious time and I pray that everyone will see their loved ones soon, before it’s too late.