Happily demented – life, love, connections and no memory

I’ve been rethinking things.

This week has been difficult.  For me, but for my extended family most of all.

One of our family members has advanced Alzheimers and after 54 years of marriage, the very very difficult decision has been made to finally place her, gently, in a home.

Being a carer takes so much energy, both physical and mental.

I have watched over the years how she has changed, how the person we grew to love and adore, has gone, replaced by a shell, a person who does not know where she is from one minute to the next.  I cannot imagine the fear she must feel every minute of every day, not knowing where she is, or who she is with.

We must remember to phone my mum and dad”, she says to me on Christmas Day.  They have been dead for nearly 30 years.  I smile, nod and tell her we will as soon as we have finished dinner.  My heart aches.

I have watched how her husband, desperately trying to fight against the inevitable track this awful disease takes, refused to acknowledge, downplayed, out and out lied about the challenges he faced every day.  To protect her, and himself.

Nothing ever stays the same.

It came to a head and finally, crushed, he admitted defeat.

It has been a difficult week.

We take them to the nursing home.  I sit with her whilst the formalities are done.

This is such a lovely place,” she says, “If I was all alone with nowhere to go, I should like to come to a place like this.

My heart aches again.  At least, I tell myself, she likes it here.  It is little consolation.

Her husband asks the home manager what will happen once she is admitted.  He is advised not to visit for a couple of weeks to allow her to settle in.  It is likely in that time that she will forget who he is, though he is not told this at this point in time for fear he will change his mind.  She needs this place, as much as he needs it.

Where is the group we were with?” she asks me.  She does not remember him today.  That process has already begun.

Oh, they are in a meeting,” I say, “they won’t be long.”

This is such a lovely place,” she says, “If I was all alone with nowhere to go, I should like to come to a place like this.

I smile at her and nod.

Next week she will enter the home for the first time.  To ease into it, her husband has agreed to a two week respite, although we have been told by the nurse manager that it is likely she will not leave.  We should prepare him for that, we are told.

How do you prepare someone that the person they have spent every waking moment with for 54 years will no longer be coming home?  How do you even begin that conversation?

We ask about the trajectory of the disease from here.

People with Alzheimers tend to go through a very angry period, undergoing a personality change, as their brain slowly removes from them everything that makes sense.  However, once that period is over, the anger leaves and they bumble along happily demented.

It sounds strange to hear it framed like that – happily demented.  The nurse manager means no harm, seeking only to reassure with frankness, ensuring we are under no illusions.  She will seem happy, but will not be well.

I wonder about her world now.  Does she have thoughts, does she imagine herself as a young girl, in the war, under the metal table that served as a shelter for them from the doodle bugs that fell almost nightly during the blitz.  Even those memories are jumbled now, as she grasps to make sense of the fading light in her brain.

I give her two photos for her birthday – one of she and her husband on their honeymoon 54 years ago, and one of them as they are today.  Then and now.  My hope is that the photo of them on their honeymoon will spark a memory of a happy time where she can bask for a while.  Instead, she looks at me with confusion.

“It is you and your husband on your honeymoon,” I say.

“Is it,” she replies, “I thought it was a picture of my mother.”

She didn’t.  This is a known strategy people with Alzheimers use to hide their memory loss, to cover up the fact they are going “happily demented”.  She has no insight into her own disease, though I now know she must have fought so very hard to hide it for as long as she did.  By the time the disease was finally diagnosed, it was very advanced.  These strategies are not calculated but almost automatic now.

When we visit a place, any place, her first words are always: Oh, we’ve been here before.  Only once, but we’ve been here before.  Now, we just smile and agree, knowing full well she hasn’t been there at all.  We acknowledge her need, even now, to maintain a facade of mental alertness, of memory, of vitality, even if she is no longer aware of it herself.

I wonder where she sees herself, where her frame of reference might be.  I want to find that reference and key into it, so I can communicate with her, connect with her once more.  I love her deeply.

As we walk her to the car, preparing to return next week, there is a heaviness in all our hearts.

Except hers.

She is remarkably chatty and light hearted today.  Not at all like the angry person she displayed over christmas, lashing out at all who came near her, especially her husband, whose look of confusion and sadness will never leave me.  Such is the nature of this disease.

And so, I have been rethinking.  Rethinking life and what it means to be alive.  Rethinking life and how we connect with people.  Rethinking what it is I am doing and where I want to go before my mind, possibly, leaves me entirely.  Rethinking how I treat my body, how I treat people.  Rethinking my plans for this year. Rethinking. Rethinking.

Nothing every stays the same.  Ever.

Until next time,

SHW Signature AmyG Font

 

 

 

 

 

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11 thoughts on “Happily demented – life, love, connections and no memory

    1. We have found the happiness comes and goes – over christmas it was not happy at all which was the catalyst for admitting defeat. It is such an awful awful disease that robs not only the person, but their family too. I wish your dad finds his happy place too xx

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  1. Oh my, we have this experience with my father-in-law, who is in England and we are here in Sydney. The coping mechanisms he had crumpled completely with the death of my mother-in-law and he has been in a care home ever since. He unfortunately is still very angry a lot of the time. It is hard. I talk to my children (who have only known him like this) about his “heart of hearts” and how much he would enjoy the things we do – he had been an active. sports loving, caring, clever man.

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    1. Thank you Mary for your comment. It is so difficult to see them like this, having known them when they were vital loving wonderful beings. All we can do is still love them, and know that we are doing the best we can for them. The angry stage can last a long time, but my hope is that one day the contentedness settles in and life becomes less stressful for them.. It is good to encourage our children to remember them as they were, or to be reminded of them of how they once were. All I can offer you is a not-nearly-enough hang in there and much love xx

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  2. What a poignant piece of writing – not an easy subject to write about. Can really relate to this as my dear Aunty has this too and is in a lovely place where she gets good care. I recently took her a colouring book and pens and she was really excited, just like a little girl.

    Your approach to your family member is wonderful. Sadly, there are still people in my family who do not just go along with what my Aunty says and it causes her upset. The other day, she said, very joyfully, oh do you remember the Christmas decorations mum used to put across the room from corner to corner? She was clearly getting me mixed up with my mother (her sister) but I just smiled and said yes because to correct her just makes her feel bad and reminds her she is rapidly losing her memory. She constantly repeats things and every time I answer her as if it was the first – it is mentally tiring but very necessary for her sense of peace.

    I hope you and your family get through this difficult time with as much ease as possible under the circumstances.

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    1. Hi there Gilly, and thank you for your comment. I too have learned to go along with things to avoid her distress and discomfort more than anything. I wish everyone could understand that it doesn’t help to correct them, or point out that they have got a memory wrong, or it never happened. They cannot help it. It is like trying to tell someone who is blind to see, and that is very distressing for them. It is an awful disease that robs people and their families of so much.

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