I haven’t been able to write for days.

Since I took some time off from social media and blogging, I haven’t been able to get back into it with the same level of passion and excitement.

I have all the best intentions in the world, but those intentions aren’t helping form words.

I’m currently sat here in the middle of the afternoon eating a chocolate mousse topped with whip cream. Last night I indulged in a big bowl of pasta with cheese and this morning a buttery croissant. This is a pretty clear indication that somethings up.

That’s one of the gifts of age, figuring out our thought patterns and meltdown signals.

As I shovel sugar, cream, and chocolate into my gob and take a sip of my de-caff tea, I’m holding back mysterious tears. I can’t tell you for why and no, I’m not due on my period. Although this is usually what I say a couple of days before I actually come on. I need to check my calendar, brb.

Yeah, so I’m not due on for at least another week.

I get times like this, as I’m sure everyone does on varying scales. I wish I could just accept it, but instead, I beat myself up.

I guess I can sometimes underestimate just how tough my job as a carer can be. Every day I spend with my Mum, something triggers an overwhelming sense of emotion. In the grand scheme of things, is this healthy? Traumatic or difficult circumstances can suddenly become the norm, and we no longer view them as traumatic or difficult, but our everyday truth.

I had a laugh with Mum this morning and she was in good spirits, but I still think deep down I’m constantly struggling with the reality. Her reality. My reality. Our reality.

I tend to find the funny in strange situations. Like today when I laughed when she asked if she could eat a sachet of ketchup, even though she had already finished her toastie. It was funny, but it also wasn’t funny.

Sometimes I expect too much from her.  Like the time I played her a couple of songs by Siôn Russell Jones and explained it was my mate singing. I turned it up, but she didn’t really understand what I was getting at. I don’t even know why I tried, but sometimes she surprises me, so I feel like it’s worth a shot.

The loneliness, isolation and thought-filled solitude take its toll from time to time.

Sometimes I have an outer-body experience and I hear myself giving my 63-year-old Mum instructions as though I’m her Mum. Complete role reversal at it’s most tragic. It’s kind of soul destroying when I take a couple of steps back from myself.

I hear how bossy I can sound, but if I don’t put play that role, nothing will get done. It’s bizarre because she doesn’t seem to mind and there’s no resistance on her part. She’s happy for me to take charge because she feels so lost.

I definitely don’t cry enough and trust me, I’m a crier.

I hold back tears every day of my life out of fear that I’ll drown in them. The minute I open that floodgate, I don’t know how I’ll close it behind me.

Yesterday I put on a Fleetwood Mac concert and as the intro to ‘Everywhere’ started, she turned to me with such joy and happiness in her eyes as she danced along. I could feel her excitement at the familiarity of the melody. It took everything I had to not just give in to my emotions. I sat there tight-lipped, with tears in my eyes and a horrid knot in my throat that I feared would eventually choke me.

Maybe I should give in, but then I don’t want to spoil a happy moment for her.

Taking a break from social media was great when I was surrounded by a group of friends on holiday, but I’m not sure I’m coping well day to day. Does that sound wrong? Why should I depend so heavily on virtual relationships?

I spend a lot of time on Whatsapp, pestering my sisters and friends in group chats because I’m trying to make connections on a daily basis to pull me back down to earth.

Day to day, so many funny and sad events happen, and I try to document them with my camera because ultimately, I know I’ll look back in years to come when she’s no longer here and remember the good old days.

Because these are the good old days, right?

As we get older, we reminisce about the days that have passed and somewhere down the line I’m going to be envious of the life I currently have, even though I generally wonder how anyone could be envious of this living nightmare.

‘Death in slow motion’ is a haunting phrase used to describe the feelings of grief family members often feel while caring for someone with Alzheimer’s Disease. It’s so accurate it hurts. I grieve every day for the Mum I’m losing and have already lost. It’s a hard pill to swallow.

But every day I put my positive hat on and remind myself of all that I’m grateful for and compare my life with those who have it so much worse.

Even when I’m comfort eating my way into oblivion and I feel like wrapping myself up in a duvet for the next few years, I have to keep a level of optimism, even when it feels impossible.

If I’m not positive, what chance does my Mum have?

I guess all I’m saying is, it’s hard.

It’s hard.

It’s hard.

Two words I don’t say enough because I feel like I have to be strong at all times.

Two words I can’t fixate on, or I’ll crumble.

Two words that are completely understated and underrated.

'Death in slow motion' is a haunting phrase used to describe feelings of grief family members often feel while caring for someone with Alzheimer's Disease

I had a dream last night that I had to look after my Mum for four weeks on my own, with no help, or days off. I had a knot in my stomach as I tried to sleep, feeling suffocated and angry at the world. I woke up with a headache and imagined what it would be like if that was my situation because there are so many people out there that don’t have any help and are completely alone.

I’m sure I’ll claw myself out of this emotionally deep ditch soon, but in the meantime, I need to remember not to be so harsh on myself and to allow the truth of how I’m feeling to surface more often.

I guess I’ve figured out why I’ve been feeling so down in the dumps just by writing this because I sure as hell didn’t know when I first started typing. That’s the power of writing and a creative outlet. I already feel like a weight has been lifted.

Now I’ve just got my period to look forward to in a weeks time.

11 thoughts on “A Dementia Diary: Grief for the Mum I’m Losing and Have Already Lost”

  1. I have nothing else to say but just love! I don’t have any rights to say those underrated words or anything else as I have no real life experience on this matter. But what I am sure of is, God has reasons and he is surely looking after your mum and yourself too. Probably its the best time to spend with our lovedones and return back the care and love they’ve poured on us while we were young.

    Stay strong Leanne! xx

    God bless,
    JM Kayne | #InMyHeartJMKaynesBlog♥

  2. Sending lots of love your way. I completly understand the sitting on the floor and stuffing your face thing. I am so guilty of that anytime I am upset. I hope things improve for you. Wishing you all well.

    1. Thanks so much! I think the comfort eating this is a bigger problem when you don’t realise you’re doing it, but luckily I’ve kind of been able to bring myself out of it this week. XX

  3. Keep staying strong for your mom! Very few of us know what you’re actually going through, but you continue to try to stay in good spirits. Whether or not she knows it, positivity is the best for her 🙂

  4. I am so, so sorry that you are going through this. I’m sure it must be very difficult to see your mother like this. Definitely take as much time to yourself as you need to heal, and always remember that chocolate mousse with whipped cream makes everything a little bit better. Much love and prayers.

    ~xo Sheree

  5. Sending you lots of love. I lived with my grandmother who suffered from alzheimer’s in her 60s and looking back I can’t even begin to imagine how hard that must have been for my mother. Know that there are people out there that understand and that you are not alone.

  6. I can’t imagine what it’s like, but I want to let you know that you are not alone and that there are people who care for you. I’m really glad that writing has helped you, too. Sending lots of love your way. x

    1. Hi Susie 🙂 I’ve been meaning to take my Mum along for a while but the times always seem to clash. Will definitely have to make more of an effort. Thanks for reaching out, Leanne x

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