I have spent a long time ruminating on this blog. Am I ready to write it? Do I write as a nutritionist: impersonal, generic and evidence-based or do I write as a daughter, going through the myriad of emotions dealing with one parent with dementia and the other parent losing the plot as a full time carer? I don’t think I’m ever going to get it right but I do want to put a metaphorical pen to paper in case this account can help even one person going through something similar. I write therefore as someone who knows about food and nutrition but as someone who knows first-hand the pressures of looking after someone with progressive cognitive decline.
There are resources out there to help carers. The Alzheimer’s Society provides an excellent article with signposts to further help and respite care. I am in no way criticising the articles that encourage carers to eat a healthy balanced diet, take exercise, keep mentally alert, pursue hobbies and sleep well. All these things are important. And nigh on impossible.
Allow me tell you about my parents. My dad is a traditional guy in his 70s. He spent a lifetime at work, coming home at 8 or 9pm to find his dinner ready, his clothes washed and ironed and the house clean. He is quiet, intelligent and introverted. He doesn’t have a wide social network. My mum is in her 80s and her dementia (vascular and Alzheimer’s) was diagnosed a few years ago, though I noticed her declining memory many years before that. They live a long way away from me and are hence isolated, though I try to see them twice a month.
I think you can read between the lines here. My mum, like many women her age, was the glue that held our lives together. She cooked instinctively, knowing without recipe books when everything was ready; she planned, cleaned, organised. All of those seemingly innate skills that were never imparted upon my dad have gone and, as her sole carer, my dad is finding his way in a world he has never inhabited.
Without a network around him and not qualifying for respite care (which my mum would forcefully reject anyhow) he is isolated. He cannot leave her to go out for a walk to move his body or clear his mind because she isn’t safe to be left alone. He is stressed. He isn’t coping. He isn’t sleeping. Goodness knows how but he isn’t abusing alcohol but still, he stays up late into the night, for those few hours when my mum is in bed but he isn’t sleepy, and the biscuit tin is a comfort. I do all I can to help but I live hours away and I am self-employed.
My dad is not the only person in this position. Telling them to get their 5 a day, take an exercise class and ensure the person with dementia eats healthily just isn’t realistic, however well-intentioned and evidence-based it may be. What I want to offer up here are some realistic tips that might help.
Eating and drinking
If you aren’t used to cooking and navigating a kitchen, search online for or buy a book on one pot dishes. Simple chilli, Bolognese, huntsman’s chicken, curry or stew is easy to make and you can make them vegetarian by switching meat for pulses (or going half and half) and can add nutrients by chucking in some vegetables. Tray bakes in which you roast veg, meat, fish or pulses together in one vessel are also a great time saver (and less washing up too).
Get a food processor to help with chopping. They’re so handy for blitzing veg to add to stews and sauces and are perfect for quickly chopping onion, leek, mushrooms, courgette, carrot, aubergine, spinach etc. I got a small chopper from Amazon for under £30 which is ideal for veg and fits into a small kitchen. I’ve included some links to books, recipes and choppers at the end of the blog (no affiliate links).
Use your freezer. Cook more than you need for the meal and freeze portions for when you’re too tired to cook. It’s not just about peas: frozen veg, herbs and garlic are fantastic for saving time and reducing waste. Frozen spinach, onion and mushrooms can be added to one pot meals, cauliflower, broccoli, carrots and baby corn just need a little blanching before serving and herbs are cheap and handy for adding flavour without waste. Frozen fruit is great thawed and served with yoghurt or custard and can be used to top porridge or in smoothies.
If it’s all too much, I get it. I really do. There is no shame in relying on convenience food. Just try to choose products that have front of pack traffic light labelling and go for mainly the ones that have ambers and greens. It’s fine to have a treat now and again but try to go for the healthier options 8 times out of 10. Add frozen veg when you serve them or buy prepared veg in packs that can be microwaved if you can afford them. If you’ve reduced mobility, particularly hand mobility, as a carer, these sorts of products can be invaluable.
My dad hardly drinks anything apart from the odd coffee. I don’t know if it’s that generation but neither of my parents really drink much. It is so important to stay hydrated so find a drink you enjoy and sip it throughout the day. Ideally, that drink shouldn’t have loads of added sugar so try to go for sugar free options if you can.
You might need to remind the person you are caring for to drink too so it’s also important to find something they enjoy.
Great sugar free options include water infused with fruit peel, herbs like mint or sliced cucumber. Hot drinks without sugar like tea and coffee also help you to stay hydrated as the caffeine content is not normally enough to cause water loss (I’d probably avoid multiple espressos though!) If you prefer cordials or carbonated soft drinks, again, try to go for the sugar free versions.
Catering for someone with dementia
This can be tiring, frustrating, demoralising and, quite frankly, like feeding a picky toddler. My mum will eat only a very narrow range of foods, restricted to bread, biscuits, cake, white fish (but only in fish cakes or battered), mashed potato, peas and vanilla ice cream. Anything else is rejected and she WILL go hungry, or find biscuits if you attempt to give her anything not on that list.
Trying 10 times might work with a toddler. Eating together, showing how delicious you think your meal is and gently encouraging might work with a toddler. Someone with dementia is less likely to be compliant. They may be like my mum and eat a very small number of foods in very small quantities. For her and those like her, where frailty and nutritional deficiency is a real risk, it may be necessary to fortify foods. For example, add olive oil or grated cheese to mashed potato, choose full fat milk and yoghurt, serve fruit based puddings with custard or cream. If my mum wants to eat biscuits for dinner, as a nutritionist I might raise a concerned eyebrow but as a daughter, I’m just glad she’s eating.
For others, appetite and desire for sweet or salty foods might increase. In either case, if you are concerned, as a carer, chat to your doctor, who may refer you for dietetic advice. In addition, I’m not going to go into the need for modified texture food and thickened drinks for those with swallowing problems as it’s a little beyond my remit. Go to your doctor if you need advice on this.
Getting out of the house may be a challenge. My mum can’t really walk but won’t use a walking aid, so getting moving is almost impossible for either of them. My dad does a little Pilates in the morning before she gets up but his motivation to be active is low with everything he has on his plate. I entirely understand this. While going to the gym or going for a jog or walk might be impossible or unpalatable, staying active is important for your physical and mental health. There are things that you can do at home, even in the 5 minutes you’re waiting for a kettle to boil and tea to brew.
Here are a few examples, if your mobility permits. If you’re unclear how to do any of them, have a look on the British Heart Foundation YouTube channel for some great home workouts. You don’t need to do a Jane Fonda style DVD for an hour!
If you are having to physically support or move the person with dementia, it’s important to try to keep strong but it’s also essential to access help. Visit your GP or explore the different charities in your area to find out what sort of help they can offer.
This is the hardest part. Watching the character of someone you’ve known and loved for years change and disappear is soul destroying. The mannerisms, the quirks, the in-jokes, the family colloquialisms all slowly ebb away. They can be replaced by a different personality entirely, one prone to outbursts of anger and sadness, one who is resistant to help and in denial of their needs. You face repeated bouts of grief about losing someone who is still sitting next to you.
Repeating yourself dozens of times a day causes mounting frustration. Dealing with someone who vociferously refuses help time and again, often angrily and maybe even violently, someone who may be paranoid and is likely to be increasingly forgetful, confused and anxious, takes a mental toll, day after day, especially when grieving for the person you are progressively losing.
All I can say is: seek help. Call on family and friends if you can, even if it’s having someone come over to sit with the person you’re caring for for an hour while you go for a walk. Again, access respite care if you’re able, either from your doctor or from local charities.
It isn’t easy. My dad doesn’t want to make a fuss, doesn’t want to be demanding and doesn’t want to accept help. I do what I can, whether it’s texting, calling or visiting as often as I can and having them come to stay.
Try to steal a moment, first thing in the morning or last thing at night if that’s a good time, to practice some deep breathing, some meditation or to just listen to some music you really enjoy. At stressful moments, come back to your breathing, pause and refocus. I’m not an expert in this area. I’m just speaking as a daughter.
For us, music is something really important. My mum and I would sing the whole score to Les Miserables or parody Nirvana in the style of Kiri Te Kanawa and my first memories were of listening to David Bowie and Echo and the Bunnymen. Growing up, music was ever present and music is the thing that lights my mum up even now. This is often a way to reconnect, calm and share a moment. Don’t underestimate the power of music, even when much of the person is no longer present.
Finally, I fully understand that a bottle of wine, whisky or several pints of beer can offer short-term comfort and an anaesthetic against the stress. You don’t need me to tell you that alcohol is a depressant that won’t help your mental or physical health in the long run. I’m not here to preach or lecture. If you do seek solace in the bottle, try not to do it every night, try to alternate alcoholic with soft drinks and dilute wine or spirits with sugar free mixers or try low alcohol beer.
If this blog can help just one person, I will have achieved something. If any of you have useful suggestions, please let me know and I will try to keep this as a living document to which I can add as and when. If nothing else, please talk to others, even if this is online via forums (check out the Alzheimer’s Society community). You don’t have to suffer alone.
One pot recipe books
Vegetarian Meals in 30 Minutes – pre-release; This is useful if you’re active but the dishes are a good source of protein which can help maintain your muscles as you age regardless of how much exercise you’re able to do
Mini chopper food processors
Fitness equipment for home workouts
Resistance bands – loops
Resistance bands – long bands