Dementia – More Grief Than It’s Worth?

I haven’t written a blog post for a while. The reason? Well, there’s not been too much to report, I suppose.My mother is fairly settled. Some days are good, others are, well…..not so good. She is sometimes alert and responds to people with a smile and gibberish chatter about, God only knows what. She is sometimes sleepy or alternatively, incredibly and incomprehensibly angry at the world and everyone in it.

She has lashed out a couple of times at other residents’ visitors – striking a couple of unsuspecting ladies with a hand slap – at full force, I might add – to their faces. They were, apparently, very understanding. Thank goodness. I can only imagine how my mother – the real mother, the one I dream about and still catch out the corner of my eye sometimes, the one who was desperately proper and had perfect manners in every situation – I wonder how she would feel about physically assaulting two, unsuspecting and undeserving women.

I can remember a few situations in the past where she would probably have loved to have taken an effective right hook to someone. Perhaps, it is those people and those memories that are driving her to lash out now.

Who knows?

She doesn’t and neither do we.

So, my mother is fine. Or as fine as she possibly can be, living in a care home for the elderly and dementia-stricken, surrounded by a new family of fellow sufferers, all of whom are older then her by at least 10 or 15 years.

My father is good too. Or better, at least. He sounds more like his old self on the telephone each day and, worried that it was just a good performance he was putting on, I found it reassuring to see him at half term and witness glimpses of the man he once was. The silly, fun-loving Papa who could think of nothing better than reading to his grandchildren, or playing card games with them, or setting them a cryptic treasure hunt around the house and garden. Chaos, in all its fabulous glory.

It was nice to see him returning to us, again, chaos ‘n’ all.

So, I suppose life is more settled, more so than six months ago, anyway. My mother is warm, clean, safe and has a team of people looking after her each day. It is not just my father, struggling to cope on his own, so for that reason, things are good.

What I have found, is that because now there is some semblance of calm, I am able to function as though everything were normal. I no longer start weeping as I walk through M&S and see healthy, happy ladies in their 60’s enjoying a day out together. I no longer fret, day and night for my father, worrying about how he is coping, or if he is making himself ill. I no longer suffer explosions of emotion at the most awkward moments, making those unfortunate enough to be with me, incredibly uncomfortable in the face of my ugly, noisy grief.

The thing is though, that because it is not a pressing issue; because you are not grief-stricken every day and crying into your pillow at night, it can appear that your pain is invisible. Like it has been mended. Like the grief has melted away and you are back to your old self again.

It hasn’t.

It won’t.

It never will.

You simply learn to hide it better. You are aware that it is less of an immediate concern and more of a a normal situation.

I don’t talk about my mother much. I don’t dwell on it, and if I’m asked, I brush over the topic, keen to move on to nicer, happier things.

But she’s there, all the time.

She was there two weeks ago when I was really poorly. Flu-like symptoms struck and I spent the best part of three days in bed. The kids still needed me, Hubby was hugely inconvenienced by my illness and when no one was looking, I cried my eyes out and sobbed for my mother, like only a little girl can.

I cried for my mother today. It is Archie’s birthday and I remember her utter joy at becoming a granny again; the help she gave me in the days and weeks after his birth; her pride when she held him and fed him for the first time; the blind she made for his nursery;  the way she would push him in his pram, pride and love oozing out of her every pore.

There are no winners with dementia. She is missing out on her eight grandchildren and they are missing out on her. They were her entire universe and she craved spending time with them. And the children? Well, I don’t think they will ever really understand what they have lost. Perhaps this blog will one day help. I don’t know.

I have thought about my mother a lot today, as I can remember this day, 11 years ago almost down to every minute from around 4.30am this morning. I have enjoyed regaling Archie with my very vivid memories of his birthday.

“It was around this time, Arch, when we were on our way to the hospital,” I told him as we set off to school at around 8:40. “We’d already called Granny and Papa and they were on their way down, from Scotland and came straight to the hospital. They arrived at around lunchtime.”

“What was it like having people watching as lots of people stuck their arms inside you?” Martha asked, her nose scrunched up in disgust as she waited for what she imagined would be a grotesque reply.

Horrified at her understanding of childbirth, I tried to inform my eldest daughter (while Mabel sang the latest Sam Smith song at the top of her voice) that giving birth is not a spectator sport and that the room is not filled with family and friends cheering you on. “They stayed out in the visitors room,” I told her. “They came in to see baby Archie once I’d had a shower.”

“Ugh,” she responded. “What was it like when they could they all see you in the shower?”

I turned the music up and sang along with Mabel. This was not a conversation for the car journey to school on a Tuesday morning.

Archie seems to have had a lovely day with lots of cards to open and presents to play with. The card from Papa is typical of my father – it features a Care Bare on the front, a pink one wishing him a Birthday Cheer and a “fun-tastic day” full of rainbows. It made Archie laugh, though he has already insisted that he will not be showing any of his friends it as it is too embarrassing. On the inside, my dad has stuck in lots of pictures of Archie and also one of him and one of my mother from around ten years ago.

Archie's card 2

It is a lovely picture. She is holding one of her grandsons, though my father has chopped off most of the baby, so I can only guess it is perhaps my brother’s eldest, or perhaps it is indeed, Archie himself. It doesn’t matter. The fact that she is part of his birthday, as she of course should be, is the important thing.

But, as lovely as it is to see her smiling at me from inside a Care Bear card, it is no substitute for the real thing. On days like today or days when I am poorly or struggling with life, or when I just need her to tell me I’m doing okay and she’s proud of me, I feel truly robbed and the grief is as fresh as it has ever been.

I was speaking to a lovely lady whose mother passed away from Alzheimer’s a few weeks ago. We were sharing stories and I expressed my deepest sympathies for her pain. I recounted what I had previously been told, that with dementia or Alzheimer’s you grieve while your loved one is still alive.

“Yes,” she replied. “You do. But, I’m sorry to say that you grieve again when they pass away.” She then held my hands in hers and spoke very gently. “You will grieve twice.”

Twice?

Twice the grief of most people. Twice the pain and the feeling of loss. A prolonged grief that doesn’t lessen with time, but morphs into another grief instead. Like this thing called dementia wasn’t hard enough anyway.

Twice! Well, Mother dearest, I suppose it’s a bloody good job you’re worth it!

Love you, Mum x

 

 

 

8 thoughts on “Dementia – More Grief Than It’s Worth?

  1. To Mum’s defence it was only to one lady visiting her mother. For some reason, only known to you know who, Jane was in this elderly ladies room when her daughter came in and before you could say boo to a goose she gave her a small slap to her cheek. Fortunately she was a nurse and understood that these emotional outbursts can and do occur in this dreadful disease. The one other occasion when I and a staff nurse were in her room and we were encouraging her to take her medication she suddenly decided to do the same. In her own damaged and disintegrating world bricks and mortar are falling off tall buildings and her flimsy golf umbrella is not protecting her from these projectiles which makes her frightened and vulnerable. She is unable to do the most simplest of tasks now and I’m sure she realises this now as I see a little tear and a “why is this happening to me” expression coming to her lovely face.

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  2. Beautiful. And I can relate on just about every level there is. “You are aware that it is less of an immediate concern and more of a normal situation,” I mean, that is just so true. And the fact of your children not knowing what they’ve missed… I wonder about that often. How would it be, if my dad could pop by and visit whenever he wanted, like he used to, many years before my kids were born? How would he be with them? I did get an inkling of it, in the very early days when both boys were babies/toddlers. But they don’t remember that at all. And it’s SO STUPIDLY SAD.
    Much love from the U.S., keep the faith, stay the course and so on.

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    1. There are so many “what if” and “wouldn’t it be nice if…” moments, aren’t there? When I was ill, the only person I wanted was my mum. Somehow, she’d have made it alright. I hate being a grown up sometimes….., well, all the time actually. I’d love to go back and be ten again and looked after by my parents. Being grown up is not fun.
      I try and tell my kids stories about my mother, funny things she did, or how excited she was about seeing them and special moments they are too young to remember. That’s all we can do, really.
      Thinking of you and sending love. Stay strong beautiful lady
      Sarah x

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  3. Hi Sarah, I’m so glad that you have written a blog post I’ve been thinking about you and your family and wondering how you were getting on. I can also relate to a huge amount of what you write about. My sister and I have put a live-in carer in place for our parents, who both have dementia, as of just over 3 weeks ago, so are now able to relax just a little bit more, knowing that they are safer and in very good hands. But the sadness doesn’t go away. Like you, I have also recently been laid low by a horrible cold/virus. On Monday, I had to call British Gas to sort out an issue at my parents’ house. It took three attempts, on three different numbers, and spending an age on hold, to get through to the right team and even then he couldn’t answer what appeared to me to be a simple question. I was feeling more and more exasperated and actually getting properly annoyed with him when he suddenly said ‘I can tell you just have your parents’ welfare at heart’ and that was it – I was over the edge into sobbing mode. Poor bloke, one minute I’m raging at him, the next I’m in bits. He was very kind in response, which of course only made me even more fragile. You are so right – the grief doesn’t go away, it just lurks, waiting to strike when you are feeling low. All the best to you and yours. And please keep blogging.

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    1. Oh, thank you, Helen. What a lovely message. I am glad you have made progress with the care for your parents, it does certainly lessen the load, but brings with it a sense of guilt instead. And, you’re so very right, the stress levels are diminished, but the sadness is still ever-present. I sobbed my eyes out at a friend’s birthday party a few weeks ago – it exploded out of me and there was nothing I could do about it. Had to go and hide in her office until I could pull myself together. Don’t be hard on yourself – it happens to us all. We are all fragile and teetering on the edge of collapse most of the time.

      Sending love to you and your family. You are in my thoughts. And, thank you again for your kind words.

      Sarah x

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      1. Thank you, too, Sarah, for your kind words. You are absolutely right about being fragile and on the edge of collapse all the time. However, the dementia support network online is fabulous and I find it a great comfort. xx

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  4. This is so beautifully written, thank you for sharing. Often there are two periods of grief for families dealing with dementia. You miss what’s been stolen from them while they are still alive, but the physical death brings with it a new wave of grief. For me, it also brought a sense of relief, for my father, who was no longer suffering and for my mother and myself.

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