Dorset and the Dementia Journey

Those of you who have been visiting the Attic over the years will know all about my regular visits down to Dorset. Ever since the Little People were babes (and even before then), J and I used to drive the 300 miles south to the Dorset coast twice a year during the Easter and Summer holidays to visit my parents. As I grew up and went to school there, I have an understandably strong nostalgic connection with the town where I lived. But aside from me taking these personal jaunts down the memory lane of my childhood, our visits also allowed precious time for the Little's to visit and connect with their grandparents. 

My Mum and Dad separated and divorced shortly after I left home to go to art school (35 years ago), and in the following years they both settled with new partners although neither of them remarried. My Dad stayed living in the rented house where I grew up, and my Mum moved to a nearby village a few miles away, so during our Dorset visits we were able to spend time with both of my parents and their partners. Sadly my Mum died unexpectedly in 2017, but we continued our tradition of yearly visits to my Dad. Our last family visit was in the summer of 2021 - by this time the two eldest offspring were both working summer jobs and couldn't take time off to come away on holiday so it was just myself, J and a rather grumpy eleven year old Little B who went. 

At that time, we knew that something really wasn't right with my Dad - we first noticed that his memory and cognitive functioning was suddenly very awry in the Spring of 2021, although he seems to have remained blissfully unaware of it. To this day he still claims to be "fine and normal"  - we've managed twice to get him to see his GP, but even when he spectacularly failed the standard memory testing questions and it was suggested he needed to be referred to a memory clinic, he simply and forcefully said NO, there was nothing wrong, and for everyone to leave him alone and stop interfering. It's beyond frustrating, but like the GP said, he has free will and we absolutely can't force him to do anything he doesn't want to do. 

So although we haven't had any formal diagnosis of dementia, there is no doubt that he has some form of the disease. I would say that his decline has been slow but steady over the past two years, and mostly he seems fairly content within his new altered reality. Aside from the memory loss, his general behaviour has also changed considerably - he is now very restless, isn't able to concentrate for very long (he used to read a lot but can't really manage that now), and has very disturbed and wakeful nights. He also has delusions which to him must seem very real and rather frightening at times (people coming in the house and stealing his possessions being the most common theme), and this is probably the hardest thing for him to cope with at the moment. 

As you would expect, his general memory is also completely shot to bits, and I noticed that during my last two visits he didn't really know who I was any more. He can remember my name, and it's obvious that he recognises me as someone he knows well and is always happy to see, but he can no longer grasp that we're related. He thinks his daughter Lucy stays in Skipton, and the Lucy that comes to Dorset is just a lady visiting. He often asks me how long I've known him for, and marvels at the fact that I crochet just like his daughter does - do I know her, she lives in Skipton? Honestly, I learnt very quickly to squash down the heart breaking sadness of it all and not contradict him - now I simply chat about myself in the third person, which has it's own kind of twisted comedy.

The biggest blessing in all of this chaos is Lady B - that's what I call her although she isn't an officially titled Lady - and thank goodness for her. She is my Dad's partner of twenty three years, well, they call themselves "companions" I think rather than partners, but she is an absolute gem. Throughout their time together they've always kept their independence and lived in their own respective homes. They've had a solid routine for all these years, choosing to spend around half the week together at Lady B's place, and half of the week apart doing their own thing. Although it's unconventional, it's worked well for them, and they are sweetly very attached to each other.

These days, Lady B is his carer as well as a companion and I know full well that this is no easy task. My Dad now sleeps at his house every day because the movement between the two households was causing no end of confusion, chaos and sleep disruption. Lady B visits him each morning to make his breakfast and give him his tablets, and to make sure that all is well in the house. She then takes him out - sometimes shopping, sometimes out for a walk, or a stop at his favourite pub for a tipple. They then spend a little time at her place which he does seem to really like, she has a huuuuuge television screen and his current obsession is Michael Portillo's Railway Journeys. She cooks dinner for them both at her place, then in the early evening she takes him back to his house and settles him for the night (making sure there are no strange people coming in and stealing things ;)), and then she can breathe a sigh of relief as she goes home to decompress.

I do understand that this current  arrangement can only be temporary, it's not in any way sustainable. Pretty soon we will need to plan for some extra care or respite for my Dad so that Lady B isn't on call seven days a week. Because it really is utterly exhausting being in his company. I've been trying to help by visiting every other month, staying for a week at a time so that Lady B can take a proper break (she travels to London to stay with her daughter). I also ring my Dad every morning to chat about the plans for the day and talk through any worries he has as there is always something - usually his missing 'stolen' items, or the fact that he forgets where Lady B is.

So. My goodness.....you know, I wasn't intending to talk to you about very much of this in detail, but once I started writing, it seems as if I really needed to unload. It's been a bit of a purge! And I do feel a smidge lighter for being able to write things out and document where we are at, thank you for that, I appreciate you reading and being dragged along with my family issues. Thank you xxx

This last stay was actually not so bad, and I was able to relax a bit more into the role of care-giver. The type of care needed at the moment is pretty easy really - shopping for food, cooking, making sure he has his medication, calming down any agitation or confusion (there was a fair bit of this) and setting a routine for the day. I found we both fared better if we were able to get out and about each day, although there were a couple of very wet rainy days where we just hunkered down in the house and watched trains (him) and crocheted (me).

Where he lives is roughly a mile out of the town centre, and although his walking is very shuffly and painfully slow, he is capable of doing the walk there and back if we rest on benches along the way and take it gently. I found that his mood was better and he slept better if he had this daily exercise (ohhhhh....reminding me so very much of life with a toddler!) and so we shuffled along these familiar streets as often as we could. Sometimes we'd end up in his favourite pub and sometimes in a café for coffee, and it was OK really, different to the relationship we used to have, but not so bad.

On one bright sunny morning I decided we would head to the sea, I was craving it so badly and was determined we would go. I ordered us a taxi which felt very posh and luxurious, and I can't tell you how much joy was in my heart when I arrived and breathed in that fresh salty air. So, so so good for the soul.

We shuffled our way slowly around the harbour...

...to the west beach where there is a promenade with some benches and shelters to take a breather. I reaaaaally wanted to go down onto the beach, but didn't feel like I could leave my Dad on his own as he does have a habit of wandering off in these kinds of situations. Can you imagine the monumental stress if that happened, crikey, it just wasn't worth the risk.

So after a long gaze out to the horizon I decided the only thing that would ease my longing heart would be caffeine. And luckily there is a café right there on the seafront which is very busy, noisy and a little bit chaotic, but always warm and cosy, so that's where we settled for a while.

My latté was delicious and even my Dad enjoyed his black coffee (with four sugars). Afterwards we felt revived enough to take a slow amble all along the promenade...

....walking right to the very end where there are gorgeous views along the coastline to Lyme Bay. I do so love this coastline and have walked all along those cliff paths many times over the years. I realised that I'm still getting used to these Dorset visits where I'm forced to take things at my Dad's pace and have to slow everything right down to a dawdle. I also find the lack of freedom very difficult, it's a real adjustment for me and I've not found it easy, but I'm trying really hard to accept this new way of doing things. 

I had to share the above photo with you, snapped outside a gift shop in West Bay. I love to see a bit of colourful crochet bringing a smile to the local community, and these Easter bunnies were lovely. Yarn bombed post boxes have become a real craze here in the UK in recent years and there are groups on Facebook which share images and resources. I love it, well of course I do! You'll have to let me know if you've seen any around where you live, or better still if you've been involved in making any? I'd love to know more.

One thing which really did delight me when I was down in Dorset was being able to hunt down a couple packets of Moores Easter biscuits. Goodness I have such a crush on these biscuits and they really power the Nostalgia Train that I ride hard when I'm down in my old childhood place. They are a traditional treat to have at Easter and my Mum always bought them for us as children, and in later years for the Little People too. They are like a sweet shortbread biscuit with currents, cinnamon and mixed spice adding a unique Eastertime flavour.....oh, I do so love them. They are the perfect accompaniment to a mug of hot tea in the mid afternoon, and really cheered up some grey days for me.

I was in Dorset for a week in total this last time, and despite the obvious strains and worries that I've briefly touched upon in this post, I did really appreciate the quality time that I was able to spend with my Dad. The sad thing about dementia is that it's a progressive disease and I'm hyper aware that week by week, month by month, my Dad's health will slowly deteriorate. Living so far away means that I have to make a solid effort to plan regular visits, and I'm lucky that with J's help I'm able to make it happen. It'll be his 77th birthday in the middle of May so I'm going to go down again to celebrate with him, a shorter four night stay this time which I think will be just right.

I'm enjoying seeing Dorset through the different seasons, and I love that I can always take my crochet with me to ease my worries and make good use of my time away. During this last trip I made the above plate full - eighty one little golden circles, what do you think of that?! Believe it or not, this is the very beginning of a new blanket journey slowly starting out and I'm sooooooooo  excited about it. I'm still making some final colour adjustments but once I've made some more progress I'll be sure to take you along and share the creative process.

Well.....thank you again for reading along, and for your overall loveliness in the comments section this week. This wasn't quite the post I expected to write, but obviously my brain had other ideas and I do feel a lot better for dumping out my worries onto the keyboard. I know there are probably many of you who've had loved ones affected by dementia, so if you have any pearls of wisdom for me I'd love to hear. It really helps not to feel so alone with the worry of it all.

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Comments

[Leslie Pettite]

My Husband was diagnosed with Dementia when he was 62 years old 2 years ago. The Donepezil did very little to help him. The medical team did even less. His decline was rapid and devastating. It was Memory loss at first, then hallucination. Last year, a family friend told us about Natural Herbs Centre and their successful Dementia Ayurveda TREATMENT, we visited their website naturalherbscentre. com and ordered their Dementia Ayurveda protocol, i am happy to report the treatment effectively treated and reversed his Dementia disease, most of his symptoms stopped, he’s now able to comprehend what is seen, sleep well and exercise regularly.he’s  active now, I can personally vouch for  these remedy but you would probably need to decide what works best for you 💜.

[AnnieC]

Blessings to you Lucy and to your family. My heart is heavy with the journey you are on. I too am so very sorry that you are dealing with this illness. Dementia just sucks the life and energy out of everyone involved. You are handling this journey with such grace.

I admire you so much and always look forward to your posts and pictures no matter the topic.

Take care and greetings from Canada.

[Kate White]

Dear Lucy, Thank you for being open and vulnerable and sharing your dementia journey. I have had a similar journey with my father over the last five years. He deteriorated rapidly with vascular dementia and we had to put him into aged care quite quickly. I think like your father it had been coming on for a while but he was not willing to face it. He always said that he wanted to stay at home but due to stairs and him becoming less mobile, as well as not being able to look after himself we had to make that decision. My father was an intelligent man with a PhD in Science and a builder of miniature steam locomotives, so it is very hard to see him now as he spends most of his time in a wheelchair (unable to walk) and doesn't talk much. Sometimes he confuses me with my mum (who passed away 13 years ago) or his sister (who passed away 10 years ago) (both of whom I resemble, even more so as I get older) but I just enjoy being able to spend some short moments with him when I can. It is a terrible disease, but I hope you can do like I do and spend some good times with him, cherish each moment you have left with your dad as best you can, and remember all the good times.

[Sharon leak]

Hi Lucy, I’m on the same dementia journey with my dad and I feel every word you wrote. I live near settle so if you ever need a hug or walk & talk just let me know. There are no words that can describe the rollercoaster of emotions associated with this disease but knowing there are others on the same journey is a comfort in itself. Much love, Sharon

[Sian]

Oh Lucy, my heart breaks with you. Dementia is so cruel, taking away someone you love bit by bit. The priority is the safety and well-being of your Dad, and he does seem happy with his arrangement at the moment.
As you say, tough decisions will need to be faced at some point, which is never easy, compounded by guilt and worry.
We noticed things a bit awry with my mum during lockdown, and eventually got her assessed (I too lived a few hours drive away from her, making things doubly difficult). Mum was diagnosed with vascular dementia, and very quickly declined - within 6 months of diagnosis she was no longer able to dress herself, carry out tasks like preparing food or drinks, it even got to the point where she couldn’t speak on the telephone. At that point we installed an Alexa that we could connect to and remotely Drop in, so we could see her in her front room, and talk to her if she wanted to. It was a heartbreaking journey, and to cut a traumatic story short, after the unavailability of enough career visits, multiple falls and trauma we had to move her into a care home. As she had sadly lost most local friends and was no longer aware of the familiar area she lived in, we chose to bring her to a care home near where we live. She wasn’t aware where she was, so I thought the benefit of being able to see her weekly, rather than 3 times a year or so, was the best. I hated doing it, but in fact the first 6 months were great, she thought she was on a cruise! She enjoyed the activities in the home, and joined in happily. Sadly she has worsened to the later stage of vascular dementia, and she can no longer fully enjoy everything, but I am so glad we moved her, as I had 6 months seeing her safe and happy, without worrying!

[Catherine Deslandes]

Dear Lucy,
Je suis française et je suis l’une de vos fans tout à fait invisible depuis de longues années….. Je comprends très facilement l’anglais en le lisant mais il m’est plus difficile de l’écrire. J’ignore si vous comprendrez le moindre mot de ceci, mais je tenais à vous témoigner ma compassion et mon amitié. J’ai lu avec grande attention ce très beau texte, relatant votre histoire et la tristesse de voir votre papa glisser progressivement dans cette terrible maladie…. Vous m’avez bouleversée et ramener dans des lieux que j’ai visités lorsque j’avais 10 ans lors de nos « vacances en Angleterre » avec mes parents en 1977…..
Je n’ai rien oublié….. le goût des biscuits à la cannelle, du thé au lait, la Lumière, les sourires, la gentillesse de Mrs Pilinger chez qui nous logions en B&B ….. Merci de m’avoir permis de revisiter au travers de vos mots ce délicieux endroit et merci pour la confiance que vous témoignez à chacune de nous qui vous avons lue ! 🙏🏼❤️☀️😘🌊🌍🕊🐞

[Debra A Price Agrums Sposa]

Dearest Lucy, both my mom and Aunt lived with Dementia for 10 years and it was devastating. All the symptoms you talk about are real and so very difficult to deal with. I saw a program on the T.V. that showed when you put on earphones on them that play their favorite tunes from their teen years that it helps them remember many things. I saw this after both my mom and auntie passed, but I've seen so many articles on it since that it seems like it really works. Good luck to you, it's one of the hardest things you will ever go thru.

[Susan]

I think many of us know someone with dementia…or the start of it. It has been very helpful to read your post..It will inform my discussions (without referring to you of course) with those I know who are coping with family and friends who are experiencing this disease. Xxx

[Diane L]

Hi Lucy

I’ve been there. It’s hard. ‘Contented Dementia’ is a good book which helps with many things including the verbal ‘ping-pong’ as things change.
As I’m sure you know, it’s important not to correct him, but ‘go’ with him where he is.
It’s all very well the GP talking about ‘free will’, but if your dad’s illness means that he has difficulty reasoning through things, then he needs to look at his capacity to make decisions etc. No, you can’t force your dad to be seen at a memory clinic, but there are ways and means. There’s over a hundred forms of dementia, though the most common are Alzheimer’s and vascular dementia.

I’ve lived it, plus also worked with it professionally, so happy to help if I can.
Good luck. I hate the dementia thief with a passion.

[Lisa]

Dear Lucy, my mum is like your dad, but when I talk whith her I try to correct her so to bring her to the reality... I understand you deeeply in my heart. Lisa from Italy

[Silke Wittke]

Sehr bewegend!!
Du bist richtig!
Spiele die Rolle,die er dir gibt und verbessere ihn nicht,sonst merkt er,dass er falsch ist und das schürrt Ängste.
Und wir haben auch viel gemeinsam gelacht,wenn auch manchmal unter Tränen.

Liebe Grüße aus Deutschland :)

[Charlotte]

PS Has anyone mentioned getting Power of Attorney? That will certainly make life easier for you all at some point. You don't need a solicitor (I did the forms for my Mom), the forms are long, but take it step by step and you'll be fine. Also, if your Dad doesn't already get attendance allowance, he would be eligible at least for the lower rate, and probably the higher. Those forms are a faff, and long - but well worth doing. Your Dad will probably get the allowance, and then Lady B could apply for carer's allowance. the forms for that are much shorter! Cx

[Anna]

Dear Lucy, I echo all the comments about your love and care for your dad. I know how exhausting this is. My one further comment is that you may need to find a home for him at some point in the future and the time to start looking into that is now. As you say, you see deterioration every time you visit. The last thing you need is a crisis and no idea where to start. Some good places have waiting lists. I know it is the last thing you want to think about but it will make your dad’s, Lady B’s and your lives easier when (if) the time comes. Much love xxx

[Helen Sheward]

It sounds like he has Lewy Body Dementia. I would echo another comment I saw re arranging Power of Attorney ASAP, it is much easier and cheaper to do it while you can (while he still has capacity to do it) - as you can only do it while he has capacity, otherwise it is a costly and lengthy process at Court of Protection xx

[Carol]

My mum had Lewis Bodies dementia and eventually lost her speech and facial expressions. It was difficult to watch her deteriorate.
Somethings that might help - make a memory book and/or box with photos and items from the past that might be in the back of draws/shed/wardrobe.
Another thing i found that was incredible calming was a twiddle muff. I knitted s colourful one for my mum with lots of fiddley things (more the better). They are always finding something new.
May I also suggest getting a power of attorney as soon as you can with Lady B
Best wishes Carolx

[jill smith]

so glad you can spend with your Dad, that disease is very hard for the members of the family. Just had a dear friend pass away after 5 years suffering from this. I know how hard it is, you are doing anything you can, take care.x x

[Elise]

Thank you for sharing your thoughts with us Lucy. My mom does not have dementia but has other health issues and needs our help. It's a strange feeling to switch roles and to take care of our parents. Hugs to you and thank you for sharing.

[Jenny]

Hey Lucy, so many of your thoughts and comments reflect the journey we had with my Dad. He too, had ‘things’ happening to him overnight and it was so very real for him. You are doing a fine job making plans and offering respite. There is no more required.
Thanks for your chats😊
Jenny

[Lindsay]

Bless you Lucy, I know just how hard this is. Sending love and hugs x

[Rita King]

We went through a similar experience with my Grandfather. It still makes me sad thinking about it. I’m so very sorry that you have to deal with this as well. Time stops, things get put off, it’s as if life is shuffling at an agonizing slow pace. Than the next moment happens to fast and you will get blindsided. It’s ok to let go of what was and greave now. It’s ok to let yourself be that stranger to him. It’s ok to be angry, and wonder why? Try not to compare now to than. Find your new footing in between visits. You might try to find an adult day care to help. To give you and lady B. Time during the day to gather your strength. Day in and day out of caring for someone with this hateful condition will cause burnout. I will be praying for you and your family. Thank you talking about this, it is a hard thing to do, but you are much loved and we are your friends. God Bless you.

[Jan]

Lucy your story is one of compassion, love and patience.
Dementia is a disease that robs us of the people we know and love. Stay strong. Hope you have support from others not just Lady B. I cannot crochet but enjoy looking at your patterns. I knit, well, I used to but thankfully getting back to it again. Slainte (Irish for Good Health)

[Ellen D.]

You are doing all the right things when you are with your Dad. Dementia is not easy but just keep loving him and he will feel that love and you will too.

[Cathy]

Xxx

[hayley]

Really beautiful post xx

[Kate]

Sounds like he still really loves his daughter Lucy up in Skipton x