Food On The Light Switches
By suziebeans, May 21 2015 02:52PM
One day I realised that there was always food on the light switches at my mum’s house. I cannot remember exactly when that was, but I can tell you that it was the same time that we realised my mum needed some help. It started off with help to keep on top of the housework. Clothes were ruined in the wash and the house became more and more untidy. I once found a cocktail sausage in a trifle, funny as it was, I knew all was not well. My sister, busy with three small children, paid it little attention, mum was safe and content so why change anything. I agreed and we carried on as normal.
I can remember one Christmas mum making a cup of coffee for my uncle and filling the kettle with milk instead of water. I found this frustrating and a little annoying, how could she have done that? She was probably just tired and a little nervous as her brother was posh.
Our default setting was denial. We didn’t want to face what was happening. I lived 200 miles away and noticed the change more than my sister, but we managed to talk each other into the fact that mum was fine and just getting older and possibly just a bit forgetful.
My mum still drove, I watched her once struggle to work out what to do with the key to get into the car, but we still did nothing. Luckily, and I do mean this, she hit another car in a car park and it shook her up. I was thankful it wasn’t another person she hit (it could well have been). My sister and I took this opportunity to convince her that she should stop driving, she was 75, she reluctantly agreed. She asked me to sell her car in Weston Super Mare so she wouldn’t see anyone driving it near where she lived, so I did.
As time moved on we slowly introduced more help. We persuaded her to have a cleaner; the thought of this horrified her so we enlisted the help of her best friend Elsie. Elsie told her that she was getting a cleaner and suggested mum got one too. It worked, and after a couple of false starts we got her a cleaner who added value to her life, a bit of company as well as keeping the house clean.
These small changes, taking away her independence, started to affect Janet and I too. Our acceptance of her illness introduced a sadness into our lives and it chipped away at us both, slowly we were losing our mum. She was fit and healthy, but slowly her mind was leaving us. I kept saying ‘think of it as cells dying, it is just nature’ and that is how I coped and I hoped Janet would cope too.
After a while a cleaner wasn’t enough. My sister and I began to discuss care, care in the home. We took mum to the doctors and delicately broached the subject of mum requiring more help, discussing her shortcomings in front of the doctor, she looked cross and sad. The doctor gave us the number for social services and we stumbled our way through the process and eventually did the unthinkable, we arranged for a social worker to come and assess mums needs. In my mind social workers only visited families where neglect and abuse occurred. I was sad that it had come to this and mum was too. Suddenly our battle with mum’s illness had become public and help was coming whether she liked it or not.
Swearing we would never put her in a nursing home mum started to have carers come and assist her in her own home. At first visiting once a day to give her some lunch. This increased to 4 times a day when she could no longer wash, dress herself, prepare food or get herself ready for bed. But her biggest handicap was loneliness and 4 visits a day did little to stem that.
I lived and worked 200 miles away and my sister, although living less than a mile away, had her hands full with three young children. We did everything we could to address mum’s loneliness. The care company provided the most amazing carer, Sharon, who did above and beyond what she was paid to do. We arranged for friends to take her out to coffee mornings, shopping, to get her hair done. Her best friend called her every day and tried to keep mums mind active and her memories alive. We arranged for her to go for respite care on a Saturday. Janet would visit her most days and I would come home as often as I could to spend time with her.
My sister and I talked about modifying her house as the dementia got worse, turning the garage into a downstairs bedroom. We talked about her coming to live with me, or moving in with Janet. I was determined to keep my word and never let anyone else look after her apart from Janet, myself and the care that we had in place.
But the truth was she wasn’t happy or safe in her own home. She would often be found waiting at the front door when one of the carers or one of us arrived. Who knows how long she had been waiting there. We had to lock her in her own house to prevent her from wandering. Shoes, handbags, socks etc. would be found in unusual places. Who knows when she was moving these around, was it in the day, or in the darkness of the night? Her false teeth would often go missing and be found in the most unusual places. Two sets were lost completely. My best find was in a packet of chocolate éclairs in the bin.
I would stay with her and give her all my time and love, talk to her endlessly and hold her and tell her how much I loved her and how beautiful she was. I would sing to her and dance with her around the house. She would wake up early and get in bed with me so I could cuddle her to make her feel safe but the moment I said I had to go I could see in her eyes all that love and attention I had shown her unravelling. As I left I would feel physically sick, like I was leaving a small child on her own. My long drive home would be spent feeling helplessness and guilt and once home I would sit on my own in my flat thinking I have no family here, I should be with her all the time. The endless conversations I had in my head about whether I was doing enough tortured me. The guilt was all consuming.
But the truth was she wore me out. She wore my sister out. And this was mentally more than physically. She would cry and complain. We could not understand what she was saying as the illness had taken her ability to speak away. As her speech got worse we struggled to understand what she was saying, the guessing games no longer worked. We could no longer call her on the phone as she couldn’t speak and couldn’t understand how to pick up or put down the receiver on the telephone. So we couldn’t tell what she was upset or frustrated about. We often decided in our own heads what was upsetting her and tried to comfort her based on our assumptions, she probably thought we were mad at times.
I tried to teach her how to speak again. Like with a stroke victim, I thought I could get her speech back, but I simply couldn’t.
We limped from day to day secretly thinking, ‘well she was ok yesterday, so she will be ok tomorrow’. Until my Aunty Sheila said ‘What is your mother doing in that house still? She simply isn’t safe’. That was when things changed.
And so on Friday 8th May 2015 my mum moved into a nursing home.
The afternoon of the 7th May my sister and I prepared her room. Elsie had taken her out so that we could take things from her house to put in her room. We bought her Kath Kidston bedding, a fake fur throw for comfort and took her giant Peter Rabbit that Janet and I had bought for her and Pete when they had got married in 1988. I positioned him so that when she opened her door to her new home he was waiting for her.
My sister and I agonised over how to tell her. Supported by Elsie, we discussed a number of scenarios, we just needed to be strong for this one final push before we would both let go and be sad as we so rightly deserved to be.
We told her on the morning of the 8th May that the nursing home where she had respite care on a Saturday, had been on the phone and said that they loved her and wanted to know if she would like to go and stay.
There was no resistance, fear or distress when we told her. She got into the car with Elsie, her best friend, and we drove in convoy to the nursing home, the idea being to leave at separate times to make the process as easy as we could for mum and, secretly, us.
My sister and I busied ourselves with the practicalities of the move, making sure her room looked cosy and welcoming and filling in paperwork required by the home. Mum was calm. Sharon came to help her settle in too. One by one we left. I was the last to go and when it came time to leave I kissed her, told her that I loved her and that I would see her soon. At one time she would have said ‘I love you too’ but that response is buried deep inside her somewhere so I don’t need to hear it, I just know it. My heart melted slightly when she took Terry’s hand (the carer) and was lead into the dining room for her tea.
To be continued.
@suziebeans ... You are truly the most incredible, compassionate, unselfish and genuine person that I know. To be able to articulate your journey in such a way is a wonderful gift and you must take comfort in that you can express your inner most thoughts and feelings in such a beautiful way that enables others to understand this cruel disease. I love you and am always at the end of the phone. Kate xxx
Suzie, the love you have for your mum pours out of every word you have written, such a touching and emotional journey you have shared with us, sending you love and strength xx
I know about your knitting but this is the first blog entry I have read. Your account is so moving, so profound, so honest. I'm not sure whether you've written a follow-up to this post but I hope you do. Although I have no direct experience of a family member with dementia, I have witnessed 2 friends experience this agony, this cruel illness affect their mothers. I do hope your mother is being taken well-care of & I wish you & your family strength in coping with your living-grief.
Ah bless you all Suzie. I remember your mum from when we lived next door, her and Pete were so lovely. I hope she settles in to her new home, and try not to beat yourself up too much she's in the best place to be looked after and safe.
Take care, Sal xxxxx