7 Tips for Sandwich Dementia Caregivers by Heidi Lee Cross

7 Tips for Sandwich Dementia Caregivers by Heidi Lee Cross

When my dad passed away suddenly in 2017, my son was just four and I was plunged into the role of caregiver for my mum. She’d been displaying signs of memory loss and behavioural changes for about a year before his sudden death but we were both in denial.

Trying to navigate my son’s first year at primary school whilst dealing with grief and her diminishing cognition was deeply traumatic, and six months after my dad’s death I found myself pregnant again. A small glimmer of hope in dark times. Sadly, this pregnancy ended at 11 weeks due to genetic issues.

During this dark time, I was in fight or flight mode. Juggling responsibilities affected my mental health, and I struggled to get Mum’s diagnosis as she couldn’t face up to the fact she might be suffering with dementia. 8 years later I’m in an infinitely better position thankfully. Mum now has some paid care in place, and I’ve written a book called Milk Tulips about my experiences, which I hope will provide comfort to others in the same position as me. I have also launched an Instagram account for dementia caregivers called @dementiatalkwithM&H which I co-created with my friend Marielle who also has a mother with dementia.

I can’t go back in time to prevent some of the arguments, falls, and mistakes I made in those early days, but I hope I can make it easier for those going through the same situation, so below I’m sharing are a few take-aways with the benefit of hindsight:

1. Speak to your loved one:

First, try and speak to your loved one about your concerns. If they become angry or upset, leave the conversation and try again another time. People are individuals and will all react differently to an open discussion. My own mum took any suggestion that there was anything wrong with her, very badly and eventually, I had to speak to the GP without her knowledge. However, it took me almost 5 years to do this due to a misplaced sense of loyalty. The sooner you can get family members onto medication, the better things will be. Prescribed drugs such as Donepezil and Memantine can help stop certain forms of dementia in their tracks for a while, and the sooner they start taking, the easier their life will become. 

2. Reach out to your GP and dementia support groups:

Sometimes it might be impossible or impractical to encourage your loved one to see the GP, but if you can, even if it’s under the premise of a health check, they can then get a referral to a memory clinic who can assess them. Reach out to dementia charities such as the Alzheimer’s Society and Dementia UK. Call the Admiral Nurse Dementia Helpline on 0800 888 6678 or email helpline@dementiauk.org. You might be able to find local support groups in your area too (check on social media). Age UK is also a great resource. You need help and support too.

3. Don’t correct your loved one:

In the early stages of Mum’s decline, before her official diagnosis, I found it incredibly hard not to get into arguments with her. This was mainly because a lot of her delusions were about things I had supposedly said, or promises I’d made, that weren’t true. She also started to think my father was still alive and I struggled with this. I took it all very personally and should have just let it go. They don’t mean to say the things they do, and their delusions are true to them so go gently and try to empathise. 

4. Get a social care assessment:

Your loved one may qualify for some care visits if their savings fall below the threshold. As soon as possible ,speak to the adult social care department at your local council and find out what they might be entitled to. Even though my mum had savings, in the early years, she was still entitled to mobility aids, SOS helpline support, a clam-style phone/tracker, a key safe, and in recent years items such as a hoist (mechanical device for lifting) and commode (portable toilet). They might also find they are entitled to Attendance Allowance via the government which is not means-tested and can help pay for care, a cleaner, or other assistance in the home.

5. Invest in technology:

Your loved one might start to wander, meaning they leave home but can’t find their way back. This can be very distressing and the first time it happened with Mum I was mortified, receiving a call from a police station at 5 am saying a dog-walker had found her confused down the end of her road, wearing only her dressing down and shoes. Getting a video doorbell and a key ring tracker was a godsend and, as we live locally, we could bundle in the car and get around to her house quickly if she ever ventured out. You can also get insole trackers, which if your loved one is in the early stages of dementia, can give them freedom to be as independent as possible whilst being able to keep an eye on their whereabouts. 

4. Look after yourself:

This is one area I found particularly tricky, especially as I was also trying to work part-time as a copywriter and look after my son during the early years of Mum’s decline. It’s so important to look after yourself though. Take time out when you can, be it a walk in the fresh air or a mindfulness practice using an app, or meet a friend for coffee. I found talking therapy helpful and you can self-refer via the NHS. Anxiety medication was also prescribed and although I appreciate this is not for everyone, I have found it incredibly helpful in giving me the level of detachment I needed to get things in place for both Mum and myself.

5. Speak to your child/children:

My son was 4 when my dad passed, at which time Mum’s symptoms were very mild so he was largely unaware. Over the years he witnessed behaviour from his beloved grandmother, I would have never wanted him to see. Please speak to your children about dementia and what it means. There are some wonderful children’s books which explain to younger kids what it means for their loved ones to have this illness. I am working on one myself which I hope to publish next year.

5. Find a community:

I had local friends whose mums were going through the same thing yet I still felt alone during the early years of her decline, especially before her diagnosis. This is why my friend Marielle, and I have set up our Instagram account @dementiatalkwithM&H. There are so many amazing groups on Instagram and Facebook where you can vent, and get advice from those who know EXACTLY what you’re going through. It’s a journey filled with sadness, highs, lows, grief, resentment, anger, joy, and a million other emotions, often all in the same day. Find your people, it helps to know that you’re not alone.

6. Let go of guilt:

Whatever choices you make for your loved one, let go of guilt. You are doing the very best you can and have their best interests at heart, do not lose sight of that. I struggled alone for 5 years before care was put in place, and even then, I felt guilty I could no longer do it all myself. There are wonderful carers and care homes out there, and this might well become your reality, especially if you’re a sandwich carer with other responsibilities. Be their voice and their advocate, but think of yourself and your family as well. 

7. Enter their world:

And finally, try to meet them where they’re at. It’s incredibly hard to see your loved one deteriorate and you may lose the connection you once had. My mum doesn’t know I’m her daughter any longer, however, she often knows my name and is usually happy to see me. I’m not saying any of this is easy, honestly, the last 8 years have been the hardest of my life but there are still glimmers of hope and happiness, and you will see chinks of the ‘old’ them through the armour of dementia. Look out for these moments and cherish them. It’s a hard road but you are stronger than you think, and caregiving will bring you community and joy as well as heartbreak. You are not alone.