Lucy's story: ‘Lettuce in the freezer and ice cream in the fruit bowl’

Eating and drinking can be challenging for someone affected by dementia. Here Lucy describes her experiences with her mum, who has Alzheimer's disease.

Mum would eat odd things, unable to cook anymore, or forgetting to eat, loving sweets and cakes, but surprisingly losing weight. Not recognising when food was spoiled, out of date or mouldy.

I considered that the best way I could help her was to arrange for meals on wheels to be delivered to her home. I also ordered a food delivery on a weekly basis from the supermarket giving her more variety and choice.

She enjoyed the company from a local care agency. They were supportive and kind helping her with housework and in making her shopping list. They were good company for her too, especially in winter, the colder weather restricting her to the indoors and spending more time alone.

Lucy and her mum, Rosemary

Lucy with her mum, Rosemary

She had been getting quite confused about the day and time. My sister hoped to help her focus by giving her a diary - sort of timetable to try and focus her on. When was breakfast, lunch and dinner, when she should feed the dog. Little reminders of when she had dental or doctors’ appointments and reminding her that the dentist suggested she brush her teeth both morning and evening.

On one of her OCD events, lovely fresh salads and ready meals would be decanted into a bin liner. Just one or two items at a time and then taken outside to the communal skip. Any passer-by must have thought it was their lucky day, free food. If the neighbours noticed nothing was said.

Getting more support at home

I heard from a community mental health nurse who suggested trying to arrange for the nurse to visit and see if we could get the medical team to prescribe a ‘patch,’ which would go on her arm weekly therefore having no need to go back to the memory clinic.

The GP suggested the community nurse pop in. He could get a prescription for medication which may help to improve her memory.

I enlisted more help from the agency to go in and check up on her; do light housework, or just help her to make a snack for lunch.

Her daily care chart mentioned: ‘Rosemary must have done a talc dance today; the bathroom was festooned in it’.

I put on wash loads and sorted out her clothes hanging them up to dry. I checked out her fridge for expired products and we ate lunch together whenever I could, but I was already working and caring for my own children.

I ordered food weekly, trying my best to help; however I would find lettuce in the freezer and ice cream in the fruit bowl.

The fridge would be turned off for an unknown reason and unspecified amount of time.  One of her carers wrote ‘got a quiche out of the fridge for lunch, it had mould on it; Rosemary became loud and aggressive when I advised her not to eat it.’ I ordered bin liners and bleach-and couldn’t understand where they were going.

Mary, who lives with dementia, smiling into the camera,

A trip to the local shop

Wine was the other thing that went missing. Of course Mum was an adult, so she would take herself, with her wheelie trolley, up the local shop and buy wine. But because she was forgetting when she last had a little drop, she would have another and maybe another. The good thing was, she could only drink what she could collect.

I have no idea whether during this time she knew how much things were worth. I am quite sure she didn’t know the difference between a five or a ten pound note. I like to think the local shop was run by honest people and by going with her on occasion, I was able to show she was not alone. Soon to my relief, my brother took over the finances.

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Mum became less confident in the use of the microwave following an incident of one burnt pan and a suspicious looking mark on the floor.

Food was not being rotated, mould was a common sight in her new fridge. She started to turn off the fridge. She forgot what time and day it was often, in spite of my big clock indicating the time, day and date. She kept on changing the day, I had to adjust the time each time I saw her.

I arranged for an electrician to come. She gave him a cheque with the wrong date on it, not sure if he ever did get paid. But he was a kind soul so he may have excused her.

Eating out

On the surface, we looked fairly normal going out together. On closer examination the onlooker could see that Mum was dressed in several layers of clothing, at least one of which was her pyjamas. And on closer inspection, the outer layer holds a few drops of yesterday’s dinner.

Her teeth were starting to decay at a rapid rate. The toothbrush lays suspiciously dry together with the shower and reminders went unnoticed.

I would take Mum for an outing to the local tea shop, a lovely shop in a quintessentially English village. The owner became used to us and tolerated our custom in a polite and friendly manor. We enjoyed cake, cappuccino and polite conversation.

Mum was starting to be unable to cope with her day to day life. She used to know she had 10 grandchildren, but now thinks she has 6. She is unsure of the season, to her it is March - clearly the leaves are falling - it is October and Autumn.

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11 comments

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I hope by sharing this-it will help some others in the same situation to cope and realise they are not alone.

omg cannot believe this story, it mirrors mine with my mom, exactly the same! nice to know its not just us, finding it really hard to get her to eat at moment. thanks for sharing
Gillian

I experienced Alzheimer's with my mam and dementia with mum in law. These are terrible illnesses which rob people of their life slowly as you watch them. They seem to shrink before your eyes. It's also more difficult to get help from Social Services than it used to be just when you really need it. I don't know how the government can lie about what they want to do to help mental illness etc.

I am so grateful for your openness and honesty. I've just come back from yet another hospital admission. This helps me realise what my "new normal" looks like. Thank you. Thank you.

Thankyou Lucy - mum is 74 & in late stages , it’s excruciating to watch and I only hope mum is too poorly to care. She’s gone from a beautiful social independent woman to a frail old lady ! I miss her voice & our cake & cappuccino days ! Keep spending as much time as possible with her - you will thank yourself for it one day! X

It helps to know I am not alone. Mum cannot understand why carers are necessary. Getting her to take meds is quite often a battle and quite often not taken because she just won't take them.

Always helpful to read someone's else's ideas and experiences. Caring after mr 85 year old father who has dementia and early stage Parkinson's. Everyday is a battle but knowing you are not the only one provides some sollace. I agree with the social services comment. Regrettably it is all about money!!!!

I had no idea that others were going through the exact same thing. I have been caring for my mom for over 5 years and I've been watching her slowly dissenegrate. Some things she does make me laugh, some make me cry. I had wanted to keep her out of facilities thinking I could care for her until the end. She is at a point where she won't swallow, wanders off and has turned combative. She is up all hours since daylight and dark mean nothing to her. Even though I should be proud how long I kept her, I still feel that I've let her down by placing her in a facility at this point .

My mum was diagnosed shortly after her 90th birthday, some present to get! Because I live with her for quite some time her decline has been more noticeable to others but, not to me. However in the last few weeks her decline has become for pronounced combined with a sort of withdrawal from the world. The hard reality is that all she wants to do is eat & sleep on a normal day. All her usual activities such as crosswords etc have become alien to her, despite attempts to the contrary.

I'm at the first stages of this, I'm currently sat with my mum after making her soup, as it turns out she'd forgotten to eat. This is a new development and means I will need to bring carers in for meal provision.
The medication she's on seems to be a hit and miss affair, no matter how many notes I leave, sorted into pill boxes so that something else try and sort out.
I'm glad I found this place because I've felt very alone and nobody really tells you how you should deal with this, you learn as things happen.

I work as a carer and I found this blog really useful as it helps you see it from the family's perspective. One of my clients is having problems with eating now. She used to feed herself, but just leaves the plate unattended now. Even when I assist to feed her, she will "store" the food in her mouth. I encourage her to drink fluids, but even that is becoming challenging now. I cannot ask her what she wants as her verbal skills have gone. It is terribly sad for her and her family, but as a fellow human being I feel a great sadness for her also. It does help to share experiences and there definitely needs to be a bigger budget for health and social care. It really is disgusting that services are difficult to access.

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