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It’s been a confronting & sad week with one of my dementia friend’s husband dying and after dropping Mum to the bus for her day centre I learn that Mr B her ‘boyfriend’ has also died.  Just brings it all home & makes it all a little too real.  However, I’ve decided to honour Mr B by writing a little bit about his ‘relationship’ with my Mum.  I will add that Mr B was happily married but he was a massive flirt with everyone & made Mum feel like it was just her.
Each morning that they are both getting transport to their day centre, Mr B is already on the bus when Mum & I arrive.  It goes like this:
Mr B:  “Morning pinky” – this is because my Mum’s favourite colour is pink.
Mum:  “Morning perky”
Mr B sings:  “She wore pink knickers & a hooly hooly skirt” etc etc
I didn’t know this song & whilst Mr B knew all of the words, my Mum would also remember some of them as he sang his way through the song, she would finish the lines.
I returned home to google/youtube it but couldn’t find it anywhere until suddenly I realised that Mr B had changed the lyrics slightly.  For those of you who don’t know the song is ‘She wears red feathers & a hooly hooly skirt’ & it’s by Guy Mitchell.
Mum doesn’t remember Mr B so we won’t be telling her that he’s gone but we will miss him & their special morning repertoire.   RIP lovely Mr B xxx

I’ve been struggling with some physical problems that have been causing me a severe lack of sleep.  A few nights ago I gave Mum half a sleeping tablet to try & help us both.  It didn’t help her sleep.  It made her delirious, climbing down the stairs (which she generally doesn’t do once she’s gone up to bed) to tell me she was worried because she had already been down 10 times & I had been out for hours (I had been in the lounge for the 2 hours since she went to bed) and then to deal with her still being awake all night.
Today I am physically incapacitated due to skeletal problems.  No sleep last night due to my pain, Mum of course had a good night.  Irony is the one of the baines of my life lol.
Half an hour to get my body out of bed whilst still yelling in pain etc.  That’s fine, I can deal with muscular pain, however, Mum dealing with it is something completely different.  She thinks when I’m not feeling well that I’m grumpy with her because she forgets that I’m not feeling well.  Finally she goes to bed & I decide a full sleeping tablet will shortly give her a good sleep, keep her safe & give me a break to just ‘be’ with my pain but no!
She’s just  half way down the stairs, after being up there for 2 hours, delirious, wants a Bacardi & coke, why am I home & why am I not out?
i had plans today & several ideas & offers of plans tonight.  My body not allowing me to partake is one thing but to then not be able to chill, recharge & just ‘be’ while I’m not feeling okay is another.
I don’t mean or want to sound negative.  I will ride & breathe through it as I do.  Just good to share sometimes that it’s never ending, nobody to break that cycle for me, cook me dinner, pour my wine, rub my feet.  I’m trying to do really well at having my time for me away from home but actually what’s missing is my time for me (being pampered) in my own home I guess.
Just my ramblings for Easter 2018 :-))))

It’s been a pretty sad weekend where mum is concerned.  I would like to think that she was just feeling tired or poorly and that this isn’t another decline but I think I’m kidding myself.

Anyone that knows my Mum will tell you that she has always repeated her stories, which is true.  You could tell her you’ve heard it a million times and she’d just swear at you and continue to the end.  There are now only a few stories left and most have merged together or are completely made up by her confused brain.
This, for me, someone living with her, is by far the least annoying thing about repetition.

Every time I wear my pink leggings with a green dress that has pink in it, mum will say “Those trousers go perfectly with that top, they pick out the pink in it!”  Every single time I walk into the room, it makes me not to wear it lol.
Every time I wear my t-shirt that says ‘It doesn’t get Eddie Vedder than this’, and every time I walk into the room, she stops me, reads it out and then asks me to explain.  I no longer want to wear it.
Every time I am in the shower and she uses the toilet (which is every time, I don’t have uninterrupted showers or even wee’s anymore) she will say “Will me flushing the loo affect your water?”  I can’t no longer want to shower though lol
Every time I wear my pj’s that have writing on – yep – no longer want to wear them.

These are some of the little but constant things that drive me insane.  It’s like when you try to start a conversation or tell her a story and wish that you hadn’t, even though you know how important it is to keep her as engaged as possible.

Tonight the hardest is living in a 3 bedroomed house with someone who can no longer be of any help at all.  Just wanting that other person to say, “You’re knackered, put your feet up, I’ve got this!”  Bed without dinner is happening way too much cos I don’t have the energy and she doesn’t have dinner.  Now I’m sounding really like I’m just complaining so I’ll leave it there for tonight.

I’m aware that I intended this to be a regular diary.  However, at the end of a day of living with someone with dementia, the last thing you want to do is sit and write about it, you want to switch off from it, hide from it even.  I’m also aware that it would be more helpful to write for 5 minutes every night, keep it regular, keep people informed of the declines, new symptoms and I guess offload a little myself too.  So I guess some will be funny ‘Deeisms’ and others will be big moans!  You have been warned……..

I realised today that sometimes the difference in dealing with someone with dementia on your own or whilst having someone else there can be like the difference between falling over in the street on your own or with company.  If you’re on your own, it’s embarrassing, stressful, you try to get up & pull yourself together real quick & pretend it’s all okay when it’s not, you’re dying inside.  But, if someone else is with you then you have a good laugh, once they have ascertained that you’re not injured, or maybe they actually laugh first like I do).

I realised that when mum is exposed to other people, she does what so many poorly people do, whether mentally or physically poorly, they pull their shit together.  Are aware that they need to do their best to behave ‘normally’.

In mum’s case with a mental health condition she pulls into her brain all of her repetitive stories, though no longer correct or always making sense.  When it’s just the 2 of us she can relax, doesn’t have to make an effort and instead of trying to access said repetitive stories, she instead I think, tells me what’s in her head.  It makes no sense, it’s full of confusion & rubbish.  It is so incredibly hard to get into her reality when alone.

I don’t even know how long it has been since my last post here.  I guess a big reason for that was dementia changes, life being busy & maybe a huge element of fear to actually say it all out loud.  I dare not read back and see how things were as there may have been some massive changes but at the same time I will try to convince myself that I shall simply be repeating myself here and nothing will have changed at all.
I guess I don’t know where to start either so I’ll try with today, though words are not coming as yet to explain how today was.  It was different to a bad day, a vacant day, a tired day or an “OMG she’s had a TIA day!”  Today was entirely and exclusively different to any I have ever shared with my darling mother.
Today was like (I imagine, I have never done it so forgive me if I speak out of turn, I mean no offence) spending the day with a deaf person.  From the moment I woke mum this morning she just didn’t comprehend anything I or anyone else said.  At first I assumed I was mumbling or talking too fast, too much detail etc.  I adjusted my communication, and still was doing so when she went to bed, but nothing.  She would ask how to help me, I would tell her & she would just stare blankly.  Usually she would ask again, raise her eyebrows at me, just do something else or similar or simply leave the room!  Haha until I’d say “I’m talking to you” which would normally be met with “I have no f***ing idea what you said!”
I’m not sure it’s the right time to share today.  I’m sure it was just a rough day for her & tomorrow will be better.

Tomorrow she’s at Reflections.  She absolutely adores this amazing Memory Day Centre & they really are AMAZING!  I wouldn’t be able to find the words to express how big hearted & thoughtful these guys are.  They do baking, painting, flower arranging, nail painting, singing, dancing, crafting & most of all laughing.  Mum goes now 3 days a week.  When I pick her up we stop in the hallway to put on her coat, then a minutes walk across the gravel to the car.  I ask about her day.  She has absolutely no idea what she’s done, only that everyone was lovely and she made people smile.  It has become her mission in life to make people smile & laugh.  Her jokes may often no longer makes sense but she sure knows how to make people laugh regardless.
The thought of actually not remembering what you did just 10 minutes ago is just mind blowing to me, I don’t think I will ever get my head around it.  To ask the same question over and over but retain no memory of asking and no memory of an answer.  To be constantly asking when in the car “Where am I going?”  “Where have I just been?”

Mum still dresses herself although needs help with position seams on shoulders etc.  She struggles with matching as she seems to be colourblind.  Normally she would wear on top a vest, long sleeved T-shirt & a blouse but when we got to Singing for the Brain on Tuesday I realised that there was no vest but 3 long sleeved T’s!!  They are all the same style so I’m not quite sure how they fitted over each other.

I can hardly get her to eat anything that isn’t sugar or chocolate now.  Most common with Frontal Lobe Dementia, which she doesn’t have, but she has always had a sweet tooth & they say dementia can make it worse, so maybe any type.  She can eat a packet of chocolate wafer biscuits through the night (18 to be precise) but give her something healthy, savoury…….Today she had half her lunch, then half of that for dinner.  I’ve stopped worrying about it and her GP is involving a dietician to address how important it is.

One major change has been her ability, or lack of, to help out in the house.  Her jobs involved changing the bathroom & bedroom bins, helping with bed changes, dusting, ironing & dishes.  She still helps with dishes but if there’s more than just cups & plates to wash then she will avoid doing it at all cost as the visual no longer makes sense, she struggles so much to identify objects these days.  The bins now overflow.  I leave them as long as I can to try and leave her some independence & feelings of usefulness but she either no longer notices them, can’t comprehend how to go about emptying them, can’t remember where the new bags are or thinks to do it but simply forgets by the time she’s left the room.
Bed changes are disastrous so I try and do this together rather than excluding her altogether.  Ironing 1 sheet takes almost an hour.  It’s so hard to find the balance between keeping them involved and upsetting them by giving them tasks they can no longer perform.

Mum and my best friend’s 12 year old daughter have been doing some serious bonding recently (so beautiful to watch) and one of the most bizarre things to come out of this is the fact that they shared a packet of Cheese & Onion crisps.  Doesn’t sound bizarre to those of you who don’t know her but seriously….even salted crisp are too ‘strong’ (tasty) or salty.  I buy the salt & shake crisps for her but she’ll rarely even manages the ‘strength’ in flavour of them unsalted!  So for Sharon and I the fact that mum was eating them was unreal, we even had to buy another packet.  A couple of days later I bought her the same.  She took one bite, screwed up her face & spat it out, just like she normally would.

We no longer have the joys of the constantly humming Jingle Bells.  (I knew there would come a time I wish them back).  Now we have constant ooh, aah kind of noises, mostly sounding painful.  This is constant unless she is talking & sometimes stops when she is eating.
Mum constantly interrupts as she can no longer (generally) follow a conversation.  I guess being that she’s always been a chatter box she feels anxious to not be talking and so just interrupts with random comments or stories.
I have finally got her showering but have to remove everything other than the products she needs.  I found her once almost washing herself with anti-mould shower spray (one which I sprayed in my eye once & ended up in A&E but that’s a whole other story & about me)!!!
Audio hallucinations are more common these days and mostly around hearing knocks at the door, phone’s ringing (unless our actually is, then she doesn’t hear a thing-well thinks it’s on the tv) or me calling out to her.
I still can’t take a shower or even a wee without her checking I haven’t fainted.  I guess concept of time has been a fundamental change to things too.
We have lots of sentences being finished with noises rather than the usual random words.  I used to post Deeisms on Facebook all the time but it’s more nonsense and noises rather than words now that don’t translate although we still try to laugh.
Well, so much more to share but I’m exhausted now & making this real, makes it feel very lonely, and I’m sure you are bored so I will enter one more post into the Deeism category and call it a night.
I hope to be more regular again with posting.  Get back onto my awareness crusade.  Thanks for taking the time to read.  Please don’t forget to share publicly, as far and wide as you can.  Still so much ignorance towards Dementia, it has to change, for all our sakes.

I’m appreciating more and more that I CHOSE this role in caring for mum.  I meet so many carers, not just for people suffering from mental ill health, who are married to someone, they get sick & then they feel they have no choice but to take care of them.  This often brings a lot of resentment as it’s not something they signed up for & it’s hard work with sometimes little or absolutely no reward.
I was lucky enough to make the CHOICE to move in with mum and care for her.  Okay, when I moved in I thought it would be temporary but regardless, I CHOSE to stay.
I struggled in the first few months not working.  Not just because of suddenly having no income but because I kind of felt like a fraud, lazy & just not playing my part in society I guess.  As time went on I began to realise that THIS is my job, caring for mum & like any job I’ve ever had, I want to do the best I can, learn all I can about my position & earn my (money) rewards.
So I am learning all I can about dementia, volunteering to help others in the same or similar situations & generally doing all I can to make mum’s days or moments as good as they can be, and mine.  We were trying to make new memories but really they are just moments, happy in the moment, forgotten the next.
I am so blessed to be in this role.  So blessed that my mum is one of the most caring, compassionate & funny people I know.  I am blessed that even though I’ve probably become rather co-dependant, I am aware of it, learning about it & acknowledging that yes my best days are when I feel she’s been stimulated in a balanced way but that I need to be okay with the days when she’s not, still be happy with me.
She won’t get better, it won’t get easier, it will always be changing & needing flexibility but while we can laugh & love & appreciate each day together, life just isn’t that bad at all.  We are blessed!

Mum has for some time now, often misinterpreted what has been said to her.  Some of this you will see in the ‘Deeisms’.  I organised a hearing test as I was sure she’s not had one for years and wanted to see if this was a physical symptom we could do something about.
After a few weeks of organisation (nothing seems to ever be straight forward) we finally completed her tests.
The tester joyfully shared with mum that her hearing was fine & he saw no reason for her to have any kind of hearing aids.  Mum was delighted with this news!  I was devastated! I told the tester that this had taken place in order to ascertain whether her hearing was the problem or her comprehension.  He said that the problem was with the latter.
I took mum, under her request, to the pub to celebrate the ‘great’ news.
Another symptom, another decline but at least a real diagnosis to work with.

About 18 months after this Mum did need hearing aids.  The people at my Dementia Support Group were laughing at me saying it was a waste of time as she would lose them.  They had leant through experience.  Sure enough, I kept on finding them in the bin, under her pillow & in the end one disappears somewhere at home & one at her Day Centre.  The problem was that she would go to scratch her ear or something, the aid would come out & because she didn’t recognise it she wouldn’t know what to do with it…..

Mum has suffered from ongoing nausea for over a year.  Varying degrees and often a symptom that she believes started with a certain event (like surgery to remove a tumour from her breast, even though the nausea was there before).
I have exhausted the alternative therapists with remedies and treatments to alleviate this & the GP’s are coming up with nothing but confusion too.
The past week mum has been prescribed a nausea medication that is given to chemotherapy patients (no relevance to that fact that she had cancer last year), to rule out whether or not she actually has nausea, if she is describing something else entirely or if this is a ‘perception’.
The meds, I feel, improved her ‘nausea’ feelings as she got out of bed for the first time in 2 weeks, however, she still has complained of nausea every single day.  Has this helped or is this perception? We see the GP again on Thursday and look at whether there may be something else going on or if it (simply) is a fault in the brain.  My gut tells me that this is a perception & not real but I would never forgive myself if we didn’t investigate every other theory to ensure that there is nothing physical going on.

Someone asked me today, whilst waiting on a possible dementia diagnosis for his wife “What is the difference between memory loss & dementia?”  I held my tongue to not say “118 symptoms!”  Dementia is so much more than memory problems though I don’t see the point in burdening anyone with them when they don’t have a sure diagnosis.  With the different types of dementia there are different symptoms, some are the same throughout but some are relative and are specific to the different types.  All are scary but also have means, tools & understandings that make them easier to live with and adaptable to.