dementia – Letters From My Bed

Grief.

Grief is awful.

I’ve not been able to keep still. I’ve made sure I’m out the house every day seeing someone because it’s agonising to be at home, alone with no distractions. I’m not hungry, I don’t care about what I eat or anything. I can’t make decisions because I just don’t care right now.

Friday last week I had no plans and I couldn’t leave bed. I couldn’t face all the places in the house where Bella is supposed to be. So I’ve been busy ever since. And oh boy has it caught up to me today.

Most nights I fall asleep in my chair, because I’m not really watching whatever is on the tv. I’m just staring blankly until I eventually fall asleep.

On Thursday I suddenly jolted awake in my chair, panicking that I couldn’t remember doing Bella’s eye drops that morning. If she missed just one dose of her drops she risked losing her eyes due to having detached lenses. Of course I hadn’t forgotten her eye drops, I never did. But she isn’t here to do them anymore.

These are the raw moments that are gut wrenching. I know I’m slowly getting better, I think. It hurts, and there’s no escaping that. But it’s been a few days now that I haven’t cried first thing in the morning or last thing at night. I don’t have to gather her stinky old blanket up for a hug quite as much. But it’s still nice to do as it smells of her and I can tell her I love her like it’s her I’m cuddling. But now she’s wrapped back in that blanket where she belongs.

My friends have been amazing. I honestly couldn’t have got through this last week without them and their willingness to keep me distracted and allow me to break down when I need to. Just yesterday I received a beautiful frame with one of the photos Kalie took of us a few weeks before she left. I just need to decide where to hang it, but currently above my bed seems like a lovely spot. As well as this framed photo, my friends also organised a nose print necklace and I got to take those prints and send off a few days before saying goodbye. I will forever be grateful to have these girls and their constant support and love.

This weekend I’m going to try and get the Christmas decorations up (better late than never). It’ll be the longest I’ve spent in the house since Bella has gone, but I know I can’t keep running away forever.

I’m still focused on fundraising for the powered chair, which I actually had a demo on this week. It’s a dream and super comfy, which is ideal, but mostly I can’t think of anywhere it wouldn’t allow me to go which is the true goal. I think once I’ve secured the chair I’ll feel a lot more comfortable in contacting the rescue to enquire about one of their lovely dogs. But I need to know I can commit to their exercise needs, so the push is on to get that sorted. And for now I’m happy to not have to put Bella’s blankets and bits away.

I think I’m ready to slowly piece back together some sort of life that isn’t running away from my thoughts and emotions. But I needed to do that, I needed to escape for a minute because I know I would have lost myself in them. I know Christmas Day is going to feel different and I’ll likely be sad at points. It’ll be the first time having family here with their dogs without my own and that’s going to hurt and feel strange.

There will always be a Bella shaped hole in my heart, I realise that now. I realise the grief will never truly go away, I just have to learn to live with it and cherish the years of beautiful memories Bella gave me. I’m incredibly fortunate to have shared the bond I did with Bella. I know given the choice again, and knowing how much this hurts, I would always choose to have that bond and those memories, the pain is worth that. Always.

Bella, my soul-dog.

As those on my personal facebook will have seen, on Wednesday I said goodbye to my best friend. Bella was absolutely everything to me from the day she arrived. My sidekick in all the highs and lows and my anchor through this terrible time in my life.

She had the best worst day. She was the best she’d been in months and I got my wish of letting her go on a good day. Steak for breakfast, followed by grumbling at the neighbours through the window. Then mum and I took her to her favourite place in Frome for a walk where she was full of beans and happily kicking up all the leaves and moss she came across. Then I snuggled with her for the last few hours of time we had together, savouring her weight, her scent and the softness of her ears while she snored happily on my lap.

After eating an entire jar of treats from the vet, the end was peaceful, just as she deserved it to be.

I, on the other hand, am very much not at peace. I’m broken, I feel like a shell. Yesterday I thought I was coping better than expected, but I was in fact just distracted. Today I am alone and I have never felt it so deeply, the loneliness and isolation.

The lack of snoring and grumbling from Bella is deafening. The routines which revolved entirely around caring for Bella have gone and I feel at a loss for what to do. There’s no excitement when I walk in the door, to then be gently guided to where the Bonios are kept. No more tucking in at night and getting Bella into her pyjamas. No gently waking her in the morning to start our day.

Last night, while eating dinner, I set a chip and a bit of chicken aside as I always do, only to realise that she’s not there to give them to when I’d finished. No more relying on Bella to hoover any crumbs I inevitably drop, sometimes deliberately.

Every feels wrong. I know it’s normal to feel this way, it’s perfectly normal. But the pain burns deep inside and today I just can’t bring myself to get up. Because if I get up I have to face all the places in the house where Bella is supposed to be, waiting to give me kisses and asking for them in return.

I will be ok, I have to be because Bella really did get me this far. But for now, I’m not ok and so I don’t know how much I’ll be posting for a while. Please give your pets a hug from me.

Maintaining hope.

I had the greatest appointment with the doc this morning. She’s chasing the CT myelogram for me as some dumbass at the other end has changed it to a full spine MRI, despite the referral stating why that wasn’t an option. She also discussed the idea of maybe having a lumbar puncture depending on results and that demyelination would account for many issues, including the legs not working and being disabled and the level of that limited mobility fluctuating. But we’ll see what comes back and go from there.

She’s super excited by the results I’m seeing from the diet and agrees with MCAS as a likely diagnosis, though also admitted the NHS and GPs know very little as it’s usually seen in the long covid clinics which they have no involvement with, and getting the diagnosis is even harder. She’s going to go away and do her own research so she’s in the know and understands the diet. But she’s prescribed fexofenadine, despite no diagnosis, so hopefully reactions will be more under control going forward. She also thinks a powered chair is a great idea so I can make use of the energy increase I have.

All in all 10/10 I got everything I needed and she’s keen to keep supporting me going forward.

I guess here’s a good point to actually tell you the impact this low histamine diet is having, aside from leaving me with intense cravings for my favourite foods which aren’t allowed. Mostly gravy.

Before this diet, most days I’d be lucky if I woke with 36% body battery. I used my Garmin Fenix data to help me with pacing and this is one of the key measures for that. With just 36% I’m incredibly limited, especially when around 20% would go to caring for Bella. And the trick is that you never want to run out of battery, in fact going below 10-15% can still induce a crash. So you see why I’m so limited in what I can do.

However, since the diet I’ve been seeing good numbers. By good, I actually mean unbelievable. 3 days ago I woke with 91%. Ninety-fucking-one! On average though I will wake up with 70%. Again, 20% ish goes to caring for Bella, leaving me with 35% to use so I don’t dip below 15.

I’ve been washing up, I walked Bella Thursday and today I walked Bella AND Ira (Tash’s wee dog). I hope no one saw the disaster that was me walking to the field and back with two eager dogs, on leads in the same hand, while the other had the walking stick! Given they were both walking in different bloody directions. But we had a blast and we’ve all been quietly snoozing since!

I’ve been inundated with safeguarding work the last few weeks, which has caused a crash but I’m building the stores back up. But on top of that, in the last few weeks (have been in the diet 2 weeks and 3 days) I’ve washed up a few times, cooked a few times (some disastrous), started getting on top of my laundry, hoovered, prepared lunch for the fam and Tash’s partner.

My HC pain has also been reduced which is a miracle, though new routines mean I keep forgetting morning meds which does cause a significant amount of pain throughout the day. This also confirms that clearly I’ve been having some level of reaction since the first vaccine and until the symptoms became severe it just couldn’t have been spotted.

I’m still disabled, I doubt a diet is going to do a lot is there is nerve damage, but we’re working on that as I said.

But I’ve been so full of hope with the increase in energy, I’ve even dared to dream of a future. Exploring how I might train as a dog behaviourist and what that life might look like for me.

The hardest part of the last few weeks is that Bella is already declining on the lunchtime meds and I’ve had to increase them. I know time is nearly up, and a significant amount of energy has been lost to the stress and grief of this and trying to process and plan as much as I can. I’ve been in the vets repeatedly and a wonderful receptionist gave me a quality of life questionnaire to make the decision a little easier. The trouble with dementia is that she cannot tell me when it’s time and making a non-biased decision is much harder than I imagined. So the 35% spare energy has mostly been going on Bella, especially while the meds are making her my cuddly little girl a bit more.

I’ll be honest, I’ve also already been looking at other dogs like Bella who could become my new companion through this – both my illness and my grief. The guilt of this is intense, but the closer we get the more I realise I just can’t do this alone, nor do I want to. Having Bella’s company and being responsible for all her needs is a big drive for me, she’s always getting me out of bed and moving and no matter what I go to bed with a sense of accomplishment because I was able to meet her every demand. I suppose I’ll be able to make a firm decision after the time when I know how I really feel. But I always try to be honest here, and this is one of the things that’s consuming my mind.

Of course, the dog I think would be a perfect fit is a 1 year old girl whose story is much like Bella’s was. So another part of that decision is that I would really need to consider leasing a powered chair so she could have the walks she deserved and honestly I think being able to be out more and without an impact on my body or health would do me the world of good. It seems like a sound way to spend the extra energy, I just need to figure out if I can afford the £43 a week it would cost me out of my PIP allowance, because I certainly couldn’t afford the £2300 it would cost to buy a refurbished one!

In this time I also got to see Han and Ivor, and her beautifully growing baby bump and even briefly her husband Jordon. Then I got to go for lunch with Kat, who was the wonderful woman who gave me her husband’s old perching stool (which is still a godsend!).

Maintaining connections is still incredibly important for me, especially when the friends are have are far more than that for me. It’s been hard trying to fit it in with the safeguarding, Bella and diet hiccups, but I’m slowly working it out so I can hopefully maintain at least one social day a week so I get to be with the people who have carried me this far.

So there we have it, a big old dump of the last few weeks. A mix of good and sad, but there is hope and I’m sure you can understand I need all the hope I can get right now to keep my head above water.

My darling and I.

I got to take Bella for another walk today – bloody unheard of seeing as it was just Monday we got lost.

We didn’t go far, across the road to the fields for 20 minutes or so, enough for us today. But on this walk something wonderful happened.

About halfway I stopped to let Bella catch up, once every blade of grass between us had been inspected, shredded or pee’d on. In this pause, marvelling at my dog like I always do, I became aware of a strange feeling within me; Peace and no pain. Yes, you read that right. I too was in disbelief that I stood and did a full body scan, and nope, I couldn’t identify any pain. My head was clear and I got to take a deep breath that felt like it was the first time I could breathe in a long time.

Inevitably, it lasted just a few short minutes but it was wonderful. Usually walking increases my pain, but today something was different.

Friday I started my 4-week low histamine diet. Friday and Saturday were rough days with pain, nothing unusual there, but my watch was certain I’d woken Saturday with a higher body battery than usual – 51%!! I’m not sure where it was stored as I couldn’t feel it or access it, but I’ve seen the watch is quite accurate and helps me prevent crashes by running out of battery.

However, today I woke up with 82% which is a number I haven’t seen since the start of all this. Better yet, I felt it. I didn’t feel so heavy, lower pain levels and a clearer mind. It could just be one of those lucky days, but I’m wondering if perhaps it’s eliminating histamine and therefore reactions.

Time will be the decider on that, but what if my health has been so dismal because I have been having reactions for the last 3.5 years? I’m getting ahead of myself a little, I know, but I have to hold onto hope that something, at some point, will help me in my quest to heal.

And my darling thoroughly enjoyed her walk with me today. The increase in meds is starting to help too, I’m seeing promising changes finally. She’s become more cuddly. For a long time now she’s refused to keep me company when I’m stuck in bed, and only occasionally requested to be a lap dog in the evenings. But nearly every day, for the last 5 days, she’s keen to be the velcro dog I’ve always know. It’s been wonderful, and incredibly good for my soul. That she wants to seek and give comfort again is nothing short of a miracle.

The barking all day has also reduced, though when she gets started she’s insistent. But those times are nearly always for something like cheese on her breakfast, lunchtime snacks, toilet breaks or dinner. Not forgetting second dinner of course, she certainly won’t let me!

I really think my Bella is starting to become content again, and on just 200mg at lunch times, which can be increased up to 500mg. Again, I don’t want to get ahead of myself, but I really believe this could be buying us more time together. That and the fact I’ve managed to walked her 3 times in as many weeks really feels like a sign of progress for us both.

I’m glad I get to come here and share that hope and joy with you, I know my updates aren’t always sunshine and roses. But maybe, just maybe, my hope has not been misplaced this time 🤍

Have a pew.

As part of my fundraiser I requested help to invest in a perching stool in the hopes it could help make kitchen tasks more manageable.

A lady I used to work with, Kat, kindly offered me a stool her husband had stored in the depths of one of their cupboards, she even dropped it off a little while back. I was and am incredibly grateful for this, not just the stool. She spent a little time here with her two children while Bella showed them how loud she could bark.

I finally got round to setting the stool up last week, or perhaps the week before – it all blurs into one. Today I got to use it for the first time!

I’ve had quite a low day, as my earlier post states. I did get Bella out for a walk, and to make it a little special I drove us to the woods we used to walk every morning on the way to work. There’s a part that’s always quiet, where the entire floor is moss and spongy. It’s our favourite bit, Bella loves to dig it up (please don’t hate me!) and I just love the quiet and seeing her happy. But it turns out even forests change over 3.5 years and I got lost. The paths we once walked were blocked with fallen trees and in trying to find the way we somehow got a little turned around. My sense of direction is not what it once was.

Neither of us can sensibly walk very far, my legs don’t receive communication very well after a while and get very heavy, along with a constant yawn to tell me by body needs more oxygen. Bellas back legs have started going a similar way, she slips and stumbles more now, especially up the stairs. But as I say, we got lost and were walking (stumbling) for around an hour to get back to the car.

By the time I managed to drive us home we were both beyond pooped (mum had to undo my boots for me as I couldn’t get to them), so off to bed we went for a little lie down together. She actually joins me more for this since increasing her meds and I couldn’t be happier about it! But along came dinner time, and it was just a simple salad and I really wanted to do it. The trouble was, I could barely stand to be on my legs, they were not keen on supporting me after what I put them through – who can blame them!

An opportunity arose to finally take the stool for a spin. What an absolute delight it was! Once I got everything out of the fridge and ensured I had all required tools and bowls (I do this anyway because I’m anal like that) I sat down and next thing I know dinner is finished. I make it sound like a doddle but the exhaustion made chopping safely more laborious because I just didn’t have the required ‘oomph’ and exhaustion increases tremors. What is impressive though is that by using the stool this task WAS manageable and only using 3% body battery.

I could have used it before today but I’ll admit that I’ve put it off, despite taking the plunge to get one in the first place because I DO need aids to help me. I don’t think I’ll be so reluctant going forward, who knows maybe one day soon I’ll even make risotto again because I’ll be able to stir for the required 45 fucking minutes. I mean I’m clearly so blown away by how much this stool helped that I’ve written a whole journal about it, aren’t you lucky!

The demands of a dog with dementia.

I am so weak right now, that’s the best way to describe how I feel. Sleep is non-restorative and reactions are wearing the rest of my body down rapidly. Now I understand what it is, and the dietitian sent me a great resource on MCAS that helped with this, I now understand what’s happening to my body and why I feel like I do right now.

It’s made so much make sense, I now know that, while foods are a big trigger, so are many other things – including stress.

I have one more meal to eat to complete my food diary with the dietitian so I can make an appointment to move forward. One more reaction to log and recover from. Then I’ll be eating nothing but chicken salads until my appointment so I can hopefully feel a lot less crappy.

A big source of stress for me, and it really is horrible to admit this, is Bella.

She’s getting worse. The increase in meds helped a little, but then they didn’t. She’s back to barking constantly, I can’t have people over, god forbid we try and have a conversation either. I get it, she can see we’re talking but she can’t hear it. I have to communicate with her by clicking my fingers and she only recognises a few commands now which I have to say sharp and loud while also giving hand signals. Not the signals you’re thinking but a finger up for sit, a flat palm for wait etc.

She’s anxious, scared and angry. Her behaviour is changing, some days she really is up in my face with her barking and stomping. She doesn’t mean it, it really is out of her control. I can’t get mad at her, I can’t punish her – she’s not doing anything wrong or not that she knows to be wrong anymore. She’s just losing her marbles and her manners, a natural progression of dementia.

But I don’t know what to do, and truth be told I’m really not ready to make *that* decision. I don’t think she is either, I don’t feel like she’s telling me she’s ready. Or maybe she is and all I’m hearing is the angry barking and demands of more food.

I’ve booked in with the vet for Friday, I don’t know what the outcome will be. Last time it was decided I’d basically tried it all, the only other medication would mean coming off the meds that slow the progression of her dementia. Putting her on calming meds only for this disease to rapidly get worse and take more from her doesn’t sit right with me. We’ll see what the vet suggests and hope that we aren’t *there*.

Bella’s birthday is on Wednesday, my baked bean turns 12, and that would be the worst birthday outcome ever.

The demands of a dog with dementia.

It’s made so much make sense, I now know that, while foods are a big trigger, so are many other things – including stress.

A big source of stress for me, and it really is horrible to admit this, is Bella.

Bella’s birthday is on Wednesday, my baked bean turns 12, and that would be the worst birthday outcome ever.