sOMEONE I LOVE HAS DEMENTIA...
Here are my tips that helped whilst we cared for my parents:
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We are often asked to speak to loved ones of people living with dementia to offer comfort and support so we have put together some tips and experiences we hope will help. If you require further assistance we recommend you get in touch with your GP or OT or Dementia Support Groups.
If you have carers in place make sure they stay the full time they are booked in for, even if everything has been done. It will give you the respite you need and help build less dependency. I was the only person Mum would spend long lengths of time with, which put a lot of pressure on our family. Try and encourage other family members or friends to help out and use this time to step away.
If you’re going through a tough time with OT’s and getting the support you need, copy your local MP in an email. They might not always respond but they turned up to key meetings and we would not have progressed as much if it wasn’t for their support. I’m eternally grateful Gavin Barwell. Thank you.
My Mum rarely forgot my name and I’m lucky – but she sometimes thought I was her Mum or sister or even herself. Go along with it and try and live in the moment. There will be lucid moments when memories come back. Hold onto these special times.
My Mum would ask the same question multiple times a day. It’s hard but go along with it. It’s best not to remind them that they have asked the same question; rather, be kind and go along with it. Neither of you needs the stress.
Look after you. I didn’t as much as I should have and life was hard. Going out with my girlfriends gave me some sense of normality. I will always remember coming home tipsy after a lovely evening with my girlfriends to find my Dad had been sick when I checked in on him. I felt so guilty but I needed that evening and my Dad was okay afterwards. Bruce had checked in on him at midnight and I got home around 1am. You can’t be everywhere and you can only do what you can do. Try and take time for you.
Camera’s whilst a great idea for some didn’t work for me. I found myself checking my parents camera first thing in the morning and last thing before bedtime. I know everyone is different – do consider the consequences on your wider family and your mental health.
Take as much video and photos as you’d like to. They have been a huge comfort for us as a family. Telling my Mum to tell me she loves me on video is still something I play quite often. Document the memories you want to look back on and ask the questions you always wanted to. When the time comes, it will help you grieve and give you peace.
You might find yourself having a conversation for it to be completely forgotten seconds later. Try and keep calm and quiet, and supportive. You’ll see in your loved one’s eyes that they know something isn’t right – it’s okay just to be.
It’s heartbreaking when you ask your loved one if they remember something, as it usually causes confusion. Try and assume they know and try and avoid open-ended questions. It can be quite distressing for them.
My Mum would often tell me stories of things she’d done that day. Some were fascinating and obviously untrue, and she was probably tapping into her childhood. I found going along with it and encouraging her to share was a joy for us both; a chance to have a special, loving moment.
My Mum would ask me if I’d fed her Mum or sister or Aunt, and I would go along with it. She’d frequently ask me if various things had been done, and I always reassured her they had. You’ll find a way to communicate that, albeit is made up, it helps your loved ones feel supported and protected. I’ve seen many people remind dementia patients that the person they are asking about has passed, and they have to relive that all over again. Someone told my Mum that her Mum had died, and she was so distraught – it was as if she had heard it for the first time. Be kind and keep the news positive.
People with dementia often forget to drink and eat. Have water and favourite diluting juices ready, as well as healthy snacks to munch on throughout the day. Eating together helps. Sippy cups and straws are great. Ice pops are brilliant in the warmer months.
Keeping active is important. Try and go for walks, encourage dancing, if possible, and hand and leg raises in bed, as mobility allows. Deep breathing and meditation with essential oils is also a lovely way to bond and create some calm.
Incontinence can be eased by having waterproof mattresses and covers and set changing times. Try and encourage independent toilet trips where possible to keep your loved one active but when no longer possible, I found having a sense of humour here helped Mum feel more comfortable. Conversations like ‘Do you remember when you used to change me as a baby, Mum? Well, it’s my turn now!’
My Mum was given 5 years to live and she lived for 12. I think that was down to her positivity and sense of humour but there are some vitamins and supplements we gave Mum that significantly helped. I’m not a Doctor and this is purely our experience. I recommend a daily dose of 1000mg of coconut oil, liquid iron in diluting juice, vitamins D and C and as much liquid as possible or fruits and vegetables for hydration. Also, try and limit caffeine and citrus fruits. We found this created a lot of acidity, and if you’re less active, it made my parents quite sick.
Dental hygiene can be tricky when someone is bedbound. My Dad was sick for many years and bedbound. Get yourself a good dentist early, and invest the time to have regular visits.
Giving meds can be difficult. We found giving these with a favourite drink and music on in the background, or relaying a joke you know they will love, softened the ask!
We found that a dementia doll, pet, or aid, such as a handbag, wallet, blanket or keys, helps offer comfort and a focus or distraction.
Money and feeling helpless are sadly very common. There are lots of sites selling fake money that you can use – be sure to put this in a familiar purse or wallet and if your loved one wants to ‘pay’ for things or get involved with day-to-day activities, try and be as inclusive as possible.
Try and keep your loved ones’ home arrangements, such as furniture and belongings, the same. Change is confusing and can cause distress. Familiarity is comforting.
Favourite scents are helpful for unlocking memories and creating calm, whether in perfumes, aftershaves or house fragrances. It can also spark some fun conversations.
Having a playlist ready with a couple of hours of your loved ones’ favourite songs is a blessing and can buy you half an hour of quality time, knowing that they are happy listening to their favourite songs while you take a moment for yourself. I would do this as much as I could to get work emails sent or put that much-needed wash on!
Sundown can be particularly difficult. Try and create clear communication that it is bedtime and have a night-time routine. If your loved ones are distressed and waking up in the middle of the night, there isn’t much you can do other than support them, safeguard them, and try and manoeuvre their sleep pattern so life can return to some normality. There are pills to help you sleep, but they made my Mum very drowsy and more prone to falling, so we stopped. This is just our personal experience; you know your loved one best.
If you have carers in place, ensure they stay the full time they are booked in for, even if everything has been done. It will give you the respite you need and help build less dependency. I was the only person Mum would spend long lengths of time with, which put a lot of pressure on our family. Try and encourage other family members or friends to help out and use this time to step away.