Living in the present: dementia, my family and me

I wrote a while ago about a visit to my Grandma, but I’ve not mentioned my other Gran on here until now. I visited her this weekend with my parents and little T, as well as my brother and sister-in-law who took my baby nephew to meet her for the first time.

We stayed a couple of hours, chatting. She admired the baby, his cute little toes and wispy baby hair, and played with little T’s bus and car with him. We left feeling buoyed by the visit as my uncle, who lives close by and sees her much more regularly, always paints a very negative picture of how frail and unwell she is.

The moment after we left the room, Gran will have forgotten that we were there.

It started three years ago when my Grandad had a stroke. They had been struggling at home for a while and there had been concerns about Grandad’s memory, but he was good at fooling the doctors and the two of them fiercely defended their independence, refusing any help that was put in place.

The stroke changed everything. Grandad lost his short-term memory completely and his advancing dementia came to health professionals’ attention for the first time. It quickly became apparent that Gran wouldn’t be able to care for him at home. They were admitted to a lovely nursing home and it seemed that a new normal was going to be established.

However, soon after they were admitted, Gran’s mental health took a turn for the worse. It came to a head when she had a psychotic episode, culminating in her trying to leave the home by force and take Grandad with her. They were both admitted to a psychiatric hospital for further assessment and treatment. There it was discovered that Gran also had early dementia.

This was a very difficult time for my family, my dad in particular. However, the timeline of events in my grandparents’ lives ran parallel with much more positive events in my life. The day my dad phoned to say Grandad had had a stroke was the day I gave up smoking to prepare for trying to conceive our first baby (and, despite the stressful news that day, I’ve not had a cigarette since!). While they were in the hospital, a stressful time was brightened by the news that I was pregnant with little T.

While I was pregnant they were both discharged from hospital to a new nursing home. Despite a few hiccups they settled in well and when little T was 3 months old I took him to meet them for the first time. I have some very precious videos of them the first time they saw him. They were delighted to meet their first great-grandson and, despite their short term memories failing them, they were still the Gran and Grandad we knew and loved. Grandad was making jokes about how little T was bound to be a footballer because he was kicking his little legs so much in excitement; a keen sportsman in his younger days, he’d be so pleased to know I’ve just signed little T up for toddler football.

Sadly, Grandad deteriorated rapidly after this visit and passed away peacefully soon after his 90th birthday. He and Gran had been married 65 years, and she was absolutely devastated. She would get so upset during our visits and speak of him often. However, during the year since then, Gran’s dementia has advanced rapidly. At first she would start to ask about Grandad and then remember that he was gone. For a while she became very anxious, worried about where her mother was and certain there were bombs exploding around her. Now she can no longer have a conversation as she can’t remember what she is saying. She doesn’t seem to remember Grandad at all and never speaks about him. It’s heartbreaking to see because she absolutely adored Grandad; they still held hands after 65 years. But, in a way it’s a blessing because she’s been spared from the grief and knowing that she has lost the love of her life.

We still visit as regularly as we can, although it’s a long journey for a toddler. Ever since both my grandparents’ were diagnosed with dementia I’ve said that it’s not about the past or the future; you have to live in the present. I know that Gran won’t remember seeing us or look forward to our visits, but for those few hours her day has been brightened by a cute baby and a cheeky toddler. As a mother and a grandmother, she loves being around little children, even if she doesn’t know who they are.

I did find it poignant, however, seeing how much Gran had changed in the 18 months between meeting little T for the first time and yesterday meeting baby L, my nephew. Her increasing frailty and the advancing dementia is painfully obvious. She can no longer walk, or even form sentences, let alone have any idea who T and L are, whereas when she met little T for the first time she was still very much Gran, just a slightly more forgetful version. I don’t know whether she will meet my new baby.

So I’m just grateful for the times that we have had together, the wonderful memories that I will carry forward. The lesson that I will try to take from this horrible illness that I’ve seen take over the minds of both my lovely grandparents is to live in the present without dwelling on the past or worrying about the future.


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11 thoughts on “Living in the present: dementia, my family and me

  1. Rach

    Oh this is so sad. Utterly heart breaking story, especially when you mentioned your Gran doesn’t remember your Grandad and they still held hands after 65 years. Dementia is such a cruel illness. I’m thinking of you and your family. I have to say, I do agree with you about living in the present. I think it’s the best mantra to have. #bestandworst xx

  2. Sarah - Craft Invaders

    I found this very moving. My dad has a rare sort of early onset dementia, and went from working as a GP to needing residential care within a year. He clearly still takes pleasure in seeing us. and in particular the kids even though he couldn’t tell you who any of us are – you are so right about embracing the present xx

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    Caregiving is a helping profession. Providing caregiving to a senior in their home brings enormous benefit to the caregiver and the family member. Events such as illness, accident or slow decline can cause the need for help in the hom


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