How to say goodbye?

Nine days after my last post my husband died. This is an extract of the eulogy I wrote and read out at his funeral:

‘Alberto, how to say goodbye?

We have already been saying goodbye bit by bit over the last four years, every little goodbye as painful as the last.

In your last hours I held your hand, and sang an Italian lullaby to you, the one by Connie Francis. Our boys said that it could well have been my singing that probably made you decide enough was enough!

Always, humour has gotten us through the dark times. That humour has often been as dark as the dark times, this is a dark time so there is no reason to change that.

As an unknown blanket of death seeped around you I started to move my hand from holding yours so I could make you more comfortable but instead your hand took and held mine. I wasn’t sure exactly when you were gone but sat with you anyway in the quietness of before-the-day.

You knew I wrote about our journey into your illness on Social Media. We had agreed early on to share what that journey was like. You liked it when people posted messages and memories.

Sadly, you weren’t able to keep up, the disease was a greedy monster inexorably keeping you from seeing or knowing, but in the early hours of the morning after your death I posted this on facebook:

‘4 o’clock in the morning.
I am awake now at the time I would wake and come and check on you (again).
I am awake but you are not. I am hurting, you are not. 
I am glad you are released, I cannot be sorry about that, but I am sad, oh so sad.’

Our boys, those grandchildren old enough to understand; your sister and family would not want you hurting, but they are also sad, oh so sad.’

Another extract:

‘As a family we will continue to reminisce and as a memory; a moment; a snippet; catches us out we will continue to cry, laugh, and joke, but most of all we will continue to love him. (Even if he was sometimes a contrary old bugger!). Our hearts are broken but they will heal…… just a little. We will always love him and always keep him alive in our memories. This is how we say goodbye, you will leave a hole in our lives, we love you.’

——————————————————-

After having been Alberto’s carer for so long it all suddenly stopped with an abruptness that has left me feeling stunned. Dementia had taken much of him away already but he had been in my life for fifty seven years and now he is gone. I need to go forward with my life.

Until his illness, Alberto was always there to help hang an exhibition, he would help me find ways to do the difficult and at times the seemingly impossible. He was part of my art practice. He was proud of the art I made, he was proud of me.

Practically I need to find a way to get my partly constructed studio finished, then to find the art in me and in life.

Following Alberto’s death I’m finding it hard to follow the best bit of advice I’ve had.

That advice is just to breathe.

 

 

On Time, this the first day of 2018.

(008) Malin Acrylic On Canvas 76 x 76 cms Linda Sgoluppi

Time recognizes no artificial counting of its passing but humans have human constructs, one of which is our imposition of a counting system on that oh-so-indifferent time.

I had a respite week over Christmas when one of my sons took over role as carer for Hubs and I spent a week away with a supportive friend in a cosy Sussex converted farm building. Just to be clear, my husband has Alzheimer’s disease and I am his carer, I have written about how this new role has increasingly pushed my chosen path as a painter to the margins, in fact so much so now, as my husband moves towards the conclusion of his journey that my painting activity has come to a complete stand still.

There were pictures on the walls at the cottage. Pictures that did not move me one little bit. Pictures that set me to thinking about what people choose to put on their walls. We are so bombarded with images that the choice of what we put on the walls of our homes often becomes of secondary value.

I know that for a holiday rental cottage the choice of art is more of a wallpaper exercise, but it is an exercise repeated by so many households. Most want what they put on the wall to enhance in some way but often only consider the decoration aspect of what is there.

I went on to think about some of the ‘block-buster’ art exhibition that tend to be sell-outs in more ways than terms of ticket sales.

There is so much art collected in art galleries and museums around the world that so much of it isn’t seen, much is relegated to the storage vaults. Much of that art does not stand up to the passing of time. Time withers living things and is no less indifferent to art.

Some art is never intended to be more than of its time, a passing comment on a given era and is not to be dismissed for that, however the art that seems to endure speaks to more than purely a comment on an era. The art that endures, in whatever category of style it is caste, as has a quality that speaks to the soul.  My favorite definition of what quality, was best explored in the book: Zen and the Art of Motorcycle Maintenance

I have a deep connection to so many of my own paintings, I enjoy what they play back to me, especially now in my present circumstances and even long after I painted them. It is a life journey getting to know what I created and what they communicate to me in this painful time. I can only hang a few in my own home but those few nurture me in ways it is difficult to define. My husband is moving inexorably towards the end of his Journey, he has two of my paintings in his room but no longer sees them. He had favourites too and I hope that some of what he enjoyed about them stays in some small pocket of his sadly withered mind.

I hope that what you have chosen to put on your wall nurtures you too.

 

Image: Malin from the shipping Forecast Series. Acrylic On Canvas 76 x 76 cm

A Corker

I recently shared something that happened on my Facebook page, I am lucky to have so many on there that support me through the path of my husband’s Alzheimer’s Disease.
This is what I shared:

‘Until some in-process alterations are finished the only room that’s comfortable and dust free in in the house is hubs ground floor bedroom/sitting room So there we were and finally hubs is in bed and drifting off to sleep after being particularly difficult for most of the day.

Friend Lynne and I decide to open a bottle of bubbly to celebrate the extension Planning Appeal being allowed. Lynne fetched the bottle in for me to open as she’s not good at bubbly bottle opening. I remove the foil then carefully undo the wire and remove it. The cork refuses to move so I let go for a nano-second to re-position my hand on the bottle but in that nano-second the cork shoots off, hits the ceiling like a rocket then rebounds and hits a sleeping hubs on the head. We just couldn’t help the black humour and fell about laughing at the thought and just imagining trying to explain to a coroner that hubs departure from this mortal coil was because he’d been attacked by an errant Cremant de Loire cork while we were celebrating. I should add that hubs was absolutely fine and hardly woke up were both! #Blackhumour #Alzheimers #PlanningAppealAllowed #youcouldn’tmakeitup ‘

I’ve experienced Alzheimer’s disease before my husband was diagnosed, my Stepfather suffered with the disease but I now know that the manifestation of symptoms and behaviours are different in each sufferer even if there are commonalities. I’ve been stunned at the rapid deterioration in the disease in my husband this last year. By default I am his sole carer although I do have support from my sons. I often have people say that they don’t know how I do it, how I cope, well neither do I. There is nothing noble about it, needs must and I am it.

I haven’t painted in a while mainly because there have been delays with the construction of my new studio but more because of the very difficult phase of the Alzheimer’s disease. The physicality of doing everything for another human being is exhausting, when the brain breaks down it does not matter if legs can walk, bowls can open, eyes can see, feeding yourself, swallowing medications, or anything else if the brain isn’t working, nothing works.

I go to bed very early, exhausted, but wake early. It is only in those early hours that I have time to think. Oddly as my husband’s disease is reaching a stage where he is less mobile and more bed bound I have more of a chance to consider painting and as soon as the studio is finished I hope I can manage to work again.

Life is so often about change but many of us fall into the comfortable idea of being comfortable. Being comfortable is a luxury, if you have that luxury enjoy it because often it is transitory. Talking with a close artist friend the other day, we discussed the past things we thought we wanted for our careers, we’ve both had a degree of ‘success’ in those areas but all in all they are not the areas we judge our works worth by.

People that own and enjoy one or more of my paintings are where success is. If I feel a painting can leave the studio it is a ‘success’ because it got itself to the point where it has an independent life. If the painting didn’t work as a painting it would ‘fail’.

Like so often in history when times were turbulent and sometimes downright nasty we seem to be going through a period where the idea that in order for someone to succeed another has to fail. The mechanism of the ‘Art world’ seems to have failed. The art world sees art as just another commodity, maybe it was ever thus but I want to see less of the win/lose and a lot more of the win/ win, a lot more kindness, a lot more of the creativity that the human spirit is capable of.

I will paint again, there is life beyond Alzheimer’s, if not for the sufferer at least for those close to the sufferer. I want people to want my paintings, to enjoy them in their homes. One recent purchaser wrote to me saying that from three paintings taken to choose from, one painting had said ‘Hi honey, I’m home’. All the cold white galleries in the world couldn’t give me a warmer feeling than that.

I need creativity breathing into my heart.

If I had the energy to be embarrassed I might be embarrassed.

I might be embarrassed that for now I no longer seem to be writing about making art. I might be embarrassed that my blog states it is ‘about my art and other things’ when it has become about ‘other thing’s and not so much about ‘art’.

I might be embarrassed that the ‘other things’ have become almost exclusively about my husband’s journey, his descent into that tangled web of lost brain function, that dark and lonely place of dementia beyond reach of others. With his descent into that dark place my journey as his carer follows a parallel path.

I might be embarrassed that the studio I thought would be constructed and finished last Easter is still nowhere near finished but I’m not. There are reasons for that. I’m frustrated about the studio construction but that is a different story.

My husband’s name is Alberto, he is currently in hospital and has been there for over two weeks. Alberto was admitted to hospital with pneumonia. Although we are told the pneumonia is gone, he is still very unwell. With the pneumonia came a deterioration in dementia symptoms and he now inhabits a place I would never wish for him or anyone else to be.

In theory I am temporarily released from my immediate duties of carer, and while that is a partial respite, partial because I spend every afternoon with him at the hospital, it does in theory give me time in the morning when I might be able to think and make art.

It is not impossible to make art without a studio, I have managed to do so without one before, but it is much more difficult than having a space to walk into that welcomes you and breathes creativity into your heart.

I need creativity breathing into my heart right now because I feel that Alberto’s disease is sucking the life from both of us.

I could write reams about the experience of visiting Alberto in hospital. I am minded of the soul who is in the bed opposite to Alberto. This Soul gives a day-long running commentary about what is happening in his line of sight and it includes himself in the third person. The commentary is often amusing, always sad but is also an interesting insight to how we all have that running commentary in our heads. What we usually have with that commentary is the ability to censor wayward thoughts but for this Soul the censor is gone.

I say that the censor is gone but I do not know this Soul and it is possible he did not have the internal censor I am referring to in the first place, although to be fair, I suspect he did. It seems that in the current climate many seem to have lost their censor with the result that hate is spewed from their uncensored mouths. I am embarrassed that I am of the same species and can only hope we find a way for people to learn to be kinder, both to themselves and to others.

I will stop now, not because I could not write more but because I could.

A cat drinks from a puddle in my under construction studio.

What is this life, if…

As I watch my new studio slowly rise from the ground and anticipate being inside it working on the unfinished paintings I had to put aside when I moved out of my last much loved very large studio, I wonder.

I wonder about how I’ll organize my time, for time needs to be organized if I am to make things work. So much of my time is now taken up with caring for my husband whose Alzheimer’s progression continues to rob each of us of the lives we wanted.

It is important to have time to sit and stare yet I have little opportunity for that. It is something I really miss for I cannot get lost in that place where time stands still and the mind can flow. I cannot do that because I have to be cognisant of every moment of the day and night. Sleep, when it’s available is always with an ear cocked to catch any movement from my husband.  My husband can wreak havoc with his room and himself in the middle of the night if he wakes and is left to himself. I’ve mentioned about this behaviour before and trust me, this much I know.

I am quite disciplined when it comes to studio work, in order to work, you work. I do not wait for inspiration but work towards it. Even so it is important to sit and stare. I’m with William Henry Davies in his poem:

What is this life if, full of care,
We have no time to stand and stare.
No time to stand beneath the boughs
And stare as long as sheep or cows.
No time to see, when woods we pass,
Where squirrels hide their nuts in grass.
No time to see, in broad daylight,
Streams full of stars, like skies at night. No time to turn at Beauty’s glance,
And watch her feet, how they can dance.
No time to wait till her mouth can
Enrich that smile her eyes began.
A poor life this if, full of care,
We have no time to stand and stare.

Sometimes it’s possible to steal time out in the very early morning and do my staring at the squirrels hiding their food. The village where I live, Bugbrooke, has its fair quota of squirrels. There are also other things worth standing to stare at.

I smile, laugh, shout, almost and do scream at times for it is impossible to be a patient saint even should I aspire to that, well forget the saint part but at least the patience….

I so need the patience, not least for hubs’ dressing and undressing. The logical steps in getting clothed and unclothed are somewhat more complex than most of us give a thought to. It is not enough to say now put your trousers on. Trousers can be put on back to front, or several times, because once having got them on him if I’m foolish enough to let my attention wander, the trousers can be off again a lot quicker than they went on in the first place. Trouser legs can be twisted so that it is difficult to push a leg through, yes really. Attempts to put trousers on either from a sitting or standing position becomes a long drawn out debate. Then comes the next sequential problem, button, zip and belt. I have to remember to repeat the order it’s done in, and that is usually more times that I have hot dinners in a week.

Coincidentally the wider world has gone into a sort of madness since the time of my husband’s Alzheimer’s diagnosis and for sure my world has become a very different and not so good place.

Thinking of those unfinished paintings the question I ask myself is when I am in my new studio will I be able to continue and complete them? Will they still speak to me or will I have to abandon them and begin something new? The answer is, I don’t know.

I sometimes think about the different situations of Van Gogh and say Picasso, just how their circumstances made what they did possible or not possible.  What sort of struggle was more difficult, what was seemingly successful or what was failure? Who knows, I could go down that byway and write a thesis on one or the other but all in all it’s pretty much irrelevant to me,  it is just where the mind goes sometimes.

Most of us are buffeted by fate at times, some more than others but each buffeting creates choices. Often they are choices we don’t want to make but still they are choices. It didn’t feel like I had much of a choice in being my husband’s carer, but still it was. It feels that I have more of a choice when I choose to find a way to keep on painting as soon as the studio is ready.

 

New Studio - Linda Sgoluppi
The new studio in construction. There will be large windows in the gap shown.

Squirrel Churchyard Bugbrooke 29 April 2017 - Linda Sgoluppi

Not Insomnia drawings

Never quite know what life with hubs’ Alzheimer’s is going to surprise me with. Up until about ten minutes ago throughout the night at least every half hour he decided that something was necessary. So now his teeth are uber clean, his sock drawer sorted, (not in the way you or I would do it, but hey ho), his wash bag sorted (ditto) his bed rearranged, his wardrobe rearranged, and he has dressed several times usually putting his clothes over his pyjamas.
If you read my previous post about his shaving in the middle of the night, this time he couldn’t shave because I made sure there was no razor for him to find and also hid the plug for the sink, that saves the bathroom being flooded when he leaves the tap running and the plug in. However the one that really assaulted my exhausted and befogged brain was the overwhelming aroma of mens eau de perfume. I have no idea where he found the old previously unopened bottle that had been an expensive present given to him about twenty years ago.
I’ve never liked the overuse of perfume. I’m the one who could have been the character in an old advert for some cold remedy, in it the guy has a cold so cannot smell and decides to be sure to smell ‘good’ before presenting a bunch of flowers to his amour’. He knocks the door to her gaff and upon opening she is so over-assaulted by almost agent orange-strength aroma, falls back as if she has been drop kicked. Well folks that is how the house smells right now.  I suspect that the smell will hang around for some time, it’s so strong it’s making me feel light-headed, or maybe the light-headedness is just lack of sleep.
As an aside; if anyone, friend or family thinks about buying hubs a fancy aftershave as a present for his approaching birthday don’t, alright? Just don’t.
I find it astonishing how he can actually be awake considering the amount of medications he is on, including medication to help him sleep, I would have thought it was enough to make a horse sleep but then he’s not a horse.
In the few minute interludes between sorting all the above out and getting him back into bed I remembered I was going to do more drawing until I have my new studio. The best laid plans and all that…. I own a book called The Insomnia Drawings – Louise Bourgeois, she committed to paper whatever thoughts, memories, and images surfaced during her long sleepless nights. I admire her for doing that. Maybe that is what I should do, however it seems it feels different when it is your own insomnia rather than someone else’s that keeps you awake.
For now I seem to be being not very productive, but I can live with that. I know that this period of my life will feed into some future work that may be more, or less, apparent when it does.
The photo of me was taken by hubs at the Léger Museum in Biot, France in 1987.
linda-sgoluppi-at-the-leger-museum-biot-france-1987

Thus is the world of Alzheimer’s

I seem to have less to write about art wise at the moment, I’m still waiting for my studio to be built.  I’ve written about one of my days as a carer for my husband who has Alzheimer’s.

Half an hour after I got hubs back from the Day Care Centre yesterday, he’s sitting on the sofa he jumps up saying he’s got to collect paperwork from Bugbrooke. It’s at that point I have to decide in an instant to:

a/ Enter his reality and say we’ll do it later (I know that won’t work because he is very stubborn and won’t wait).
b/ Tell him he’s already done it (that’s full of pitfalls too)
c/ Point out he’s already in Bugbrooke and does not have any paperwork to collect.

I go for c/ then suggest we go for a walk (distraction) even though my back hurts, my hip is sore and I’m generally knackered.

The distraction seemed to work and with a friend we go walk.

When he walks hubs has two paces, a snail’s pace and a slow snail’s pace. Also he insists on bringing up the rear, he will not walk in front or in between, therefore it’s necessary to be looking over my shoulder every few seconds. Even so he manages to divert at times and then boy, does his pace pick up, and I have to do a quick figure of where, in seconds he has managed to get to.

Eventually it is bedtime and I collapse in my bed hoping for a good night….

Alas…..

Hubs decides that halfway through the night it’s time to shave. I usually do most of his shave, leaving him to do just a bit to help him feel less dependent than he is. However for safety’s sake I don’t leave razors around (note to self, don’t leave old razor in the bin). He managed to find razor in the bin and have a partial shave. I was so exhausted I’ll admit to not having got up that time so wasn’t 100% sure what he was doing until I did get up when he needed guiding back to his room.

Next night-time fun was him stumbling around. When I ask what he’s doing he tells me he’s killed three ‘of those little animals’ (his way of referring to insects). I know that at times I have to enter his reality but I didn’t, I pointed out there were no insects, he pointed to the floor and said ‘yes there are, they’re there’. Nope, there was nothing… but I said well Ok they are dead now so go back to sleep.

I get him settled and hope for some sleep, then hear him again. This time he’s getting into his trousers, I point out it’s rather in the middle of the night and a good idea to get back in bed.

Thus is the world of Alzheimer’s.

my-studio-to-be-linda-sgoluppi