Part 2 of my 1,200 mile road trip in England brought me directly to Devon. An area of the world that makes me feel extremely sad yet at the same time I am in awe of its stunning scenery and landscape. I would never have discovered Devon if it wasn’t for the fact that my mother moved there three years ago. My only venture in Devon before that was when I was fourteen and I survived unscathed a Polish Girl Guides camp in Okehampton. My friend, on the other hand, did not after being sent into the forest with an axe to cut some wood, instead she cut her foot, not right off I hasten to add but there was a lot of blood. A time when the phrase ‘Health and Safety’ did not exist!! It’s amazing what stays in your mind as other memories seem to slip away.

Talking of memories, my mother sadly is not on holiday in Devon unfortunately she has Alzheimer’s and moved to a Polish Care Home there. As many people know, Alzheimer’s is a debilitating and cruel disease affecting your brain and in turn parts of your body. It is equally sad and traumatic for those that they are ‘leaving behind’. For me it feels like I have been in some kind of a surreal state of constant mourning since she was first diagnosed. Mourning for her life, mourning for the mother that I knew and feeling that I have experienced her ‘death’ several times over already.

The first time she ‘died’ was probably when she stopped recognising me. This was one of the hardest moments. I knew from then that she would never get better and the worst was yet to come. This person that cared and looked after me as a child and was still there for me and supporting me in later life, no longer recognised that I was her child. She was being taken away from me, little by little, excruciatingly and painfully slowly and there was absolutely nothing that I could do to stop it from happening. Of course, being me, I tried to somehow ‘fix’ her. The memory games, sewing, drawing, making jigsaws, playing music, looking through photos, cooking with her but she just seemed to get annoyed with all my helpful suggestions and activities, everything was met with a ‘nie!’ (that’s no in Polish)

After she fell and broke her thigh bone she couldn’t be left alone and needed 24 hour care. We managed to keep her in her own home with a combination of carers, a live in carer and me and my brothers staying with her, but it was really hard as her behaviour had changed, her routine was all over the place and the house was no longer suitable for her needs. The nights were the worst as she didn’t sleep. She would shout out at night worried about ‘soldiers’ coming into the house and I would be up calming her down checking all the doors and windows. (I’m sure these were memories from the war in Poland.) No sooner had I lay down on the sofa next door, she would call out again. I was slowly losing my mind from the sleep deprivation and severe exhaustion.

As her want to get out of bed and walk diminished so did her world and her life became the ‘back room to the garden.’ We knew that her home was no longer the right place for her. She needed somewhere else. Somewhere that she would be cared for, looked after, loved and where she would feel happy and safe. When I spoke to a couple of care homes telling them about my mother’s behaviour especially during the night their answer was to give her stronger medication.

This somehow didn’t seem right. Our mother was always the life and soul of the party, the one with the loudest voice in the room, the one that would sing ‘Sto Lat’ (Happy Birthday in Polish) at the top of her voice even though she was tone death. She would always try and put a smile on your face when you were down and would help those that needed it. The thought of her losing her personality, her spark and her soul to medication seemed so wrong.

I knew I found the right home for our mother when the manager in Devon said that ‘she can be up all night if she wants to and hang out and shout with all the other residents that don’t sleep at night, we’ll even give her a cup of tea and some cake.’ I was sold, probably because of the cakes!! It seemed the perfect place for her. At the end of the day, the decision was both bitter and sweet, yet as hard as it was to make, I think it was the right decision for her at the time. She needed more professional support, more help, more people, more space, more life. Maybe I knew that if she stayed at home, in that one room, she would probably have gone to join my ‘tata’ (father) sooner rather than later.

I remember the morning well when she left the family home for the last time and we made the five hour journey to Devon. We told ourselves that she was going for a six week respite break and she can come back home afterwards, but that dialogue helped to make the choice easier, deep down inside of me I knew that she would no longer be able to come back to her home. The home where for her entire life she was the beating heart, she was what drew all her five children and ten grandchildren to visit. I remember crying all the way back to London after we said our goodbyes and that day will be etched in my memory forever. This felt like the second time she ‘died.’

I tried to visit her as often as I could. I took her around the grounds, to the chapel, to the singing sessions I even drove her down to the beach. Each time I visited it felt that there were parts of her slipping further and further away to the point that I would usually just sit there by her side watching her, holding her hand, feeling useless and inadequate.

The good thing is that she still eats, and eats well, has always eaten well, she always loved her food. She worked in the Polish Club kitchen in Balham a chunk of her life and always made the most delicious food from scratch when we were growing up and of course Saturday was the baking day. Her cakes were amazing and she would always try new recipes and share them with her friends after church on the street corner. The huddled group of elderly ladies always looked like they were plotting something and up to no good but when you got closer the conversation was all about their latest recipe conquests.

But now, the food she gets is nondescript, all mushed to a pulp like child’s food. It literally gets swallowed, there is no chewing involved. Unable to drink water, it’s been cleverly disguised as jelly, all sweet and easy to also swallow. Mind you my mother was never a lover of water. It was always tea, the most milky tea where the tea bag had been used several times over and the milk would take up half of the cup. I could never drink it as it reminded me of dish water, but my mother devoured tea throughout the day and would complain that my tea was too strong and would make me ‘nerwowa’ (nervous) she insisted I drink her dish water. I in turn resisted. Maybe that’s why I’m now very nerwowa!!

On my recent visit to Devon I took my usual place by her bed. Her eyes were vacant facing forward, rarely moving or blinking and what appeared as tears teetering defiantly on the edge of her eyelid, also unable to fall. Her breathing was heavy and strained. Her arms, hands and fingers, so delicate and paper thin no longer moving they just lay there motionless as if they had just been sculptured from porcelain and placed delicately on top of the blanket, to be admired. All I could do was watch her, like a hawk or a guard on duty. She didn’t look back at me, didn’t even acknowledge the fact that I was sitting next to her. I talked to her, but I didn’t know if she could hear me, I didn’t even know what I should say. I tried to kiss her, there was no response, I tried to cuddle her, again, no response. I tried to take her fingers so I could wrap them in mine, she resisted. I was there right next to her yet she was a million miles away from me.

When she moved to the home in Devon, she loved to kiss people all the time but her mouth is unable to make that pout ready to plant a kiss on a unsuspecting, usually male visitor, it didn’t matter if it was the doctor her son or the priest, she would always try her luck. But as she is no longer able to move her lips and mouth like she used to, she is also sadly unable to smile and laugh or shout out loud from the other side of the room or sing her favourite all time songs.

My visits to Devon surrounded by the beautiful countryside are sad and full of my own tears. Tears I cry for my mother who would have loved Devon, it would have reminded her of Poland. If only she knew and she could see it. Yet she has no idea where she is and I feel guilty that I can see it and she can’t. I constantly feel the weight of guilt every time I visit her. Could I have done more? Could I have kept her in her own home? Could I have taken her to my home? Could I have found a home closer to us? Could I have somehow stopped her becoming ill, stopped the Alzheimer’s??

I have come to the realisation that the guilt will never go away, it’s just something I have to deal with and believe me when I write this, it is really hard to come to terms with it.

Sadly I continue to mourn the mother that I knew, Alzheimer now knows her too well, yet she is still here, she is still my ‘mama’ even if she is a million miles away in her own little world in a beautiful part of Devon. She is still here…

Share

Leave a comment