22 Things I Wish People Knew About Dementia Caregivers In 2022

There are so many things about caregivers that people don’t understand, stereotype or simply incorrectly assume. So, I thought I’ll try to change that by sharing specifically 22 things I wish people knew about dementia caregivers in 2022.

#1 – Dementia is more than…

It’s not quite that stereotypical picture of dementia that you imagine, that’s for sure! There are at least 100 different types of dementia, and they present with various symptoms. So, it’s not just memory loss that you have to learn to deal with as a caregiver.

You may be dealing with vision loss, spatial awareness, coordination, mobility issues, loss of taste, increased sensitivity to touch, anger or sorrow, and personality changes. For a caregiver (as well as your loved one), it can be a rollercoaster of emotions and issues to deal with. You’re not just dealing with a memory issue.

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#2 – Love & joy

Caregiving can bring this closeness that maybe you didn’t have before. You get to be right there in the details of your loved ones’ life, experiencing their enjoyment, their accomplishments, and their love 24/7. You learn from each other. You realise what’s important in life and put aside relationship difficulties you had in the past.

It’s not a burden. You feel lucky that you get to experience this time with them. It’s not all sunshine and roses, but when those moments & days come, especially at the beginning, you revel in them.

#3 – We’re resilient!

Dementia Caregivers are resilient. You have to be. You do things that you never thought you were capable of. You get knocked down but get back up. You build this inner strength and learn to fight & advocate for your loved one despite the obstacles put in your way.

You learn to deal with the daily challenges of caregiving for someone with dementia, building new skills whilst living with someone you know but don’t know anymore.

One of the hardest parts is dealing with role reversal, especially when taking care of a parent. You become the parent protecting, loving, and caring for them.

#4 – We’re organised & adaptive

You may be surprised to learn how well organised we are. You see, we need to help our loved ones manage their lives, dealing with all the forms that come with it, all the applications for equipment, tools, and the nightmare world of disability benefits.

Ensure that the medication and food & drink are ordered and consumed. We may be doing that whilst balancing several caring roles, parent and kids. If we have care workers to help, we need to react and cover cancellations or poor timekeeping. Dementia Caregivers are always on call and need to respond to whatever the day throws at you.

#5 – We’re constantly learning

I stupidly thought I’d get all the info about the disease and how to take care of someone with dementia at mum’s diagnosis meeting. The reality is that you leave with many leaflets (some people are luckier).

Even so, there is so much to learn about caregiving for someone with dementia. The more you learn, the better prepared you will be for the changes that are likely to come. We learn from each other in forums, social media and by scouring the internet. We become experts in looking after our loved ones.

The one good thing about the pandemic is access to courses/dementia groups that provide detailed information and tips on coping with the changing situation.

#6 – We’re extremely patient

One thing that distinguishes dementia caregivers from others is their level of patience. You have to be kind, respectful and patient with a loved one with dementia. That last thing you want to do is upset them because you’re frustrated with the situation or you’re having a bad day. It doesn’t matter. Dementia caregivers need to ensure that their body language, tone and voice doesn’t convey anything that can be picked up on and cause anxiety. You need to be patient and give your loved ones time to digest information when talking and not rush them. You need to be patient enough to answer the same question with the same energy you answered it the first time.

#7 – I’m more than a caregiver

As caregivers, we get pigeonholed into this role as “the caregiver”, and if we’re not careful, our whole identity can get consumed by being a caregiver. But we are more than that. We held down jobs (or still are), and we have our passions, our dreams, but it’s easy to forget all that whilst caregiving.

As caregivers, we need to make plans for our future. Caregiving will come to an end at some point, and if we haven’t thought about our plans, we may struggle to get past the grief. A sense of purpose can sustain us during caregiving and provide hope and excitement for the future. To encourage us out of this box!

#8 – We always have to think ahead

How many of you have sat down and planned the future of a loved one together to the end?

As a caregiver, I don’t have a choice, it’s something that we may leave a little too late, but we need to get our paperwork in order as soon as possible to make lives easier. This means having that talk about what’s important to them. It’s knowing what you’ll need to advocate or represent them when they’re unable to.

Talk about Wills, Lasting Power of Attorney (LPA) for Health & Finance, Advanced Directives. You need to have those conversations and get the paperwork done now. Banks won’t allow you access to your loved one’s account to pay bills without LPA. Due to privacy issues, utility companies won’t listen to you as the caregiver!

We need to get everything in place to make sure not only our loved one’s life is easier but our own too! The Future Planning Handbook is a good starting point for someone new to this type of planning. You can work through it together or as a family and store the information digitally which can make it easily accessible to you and if shared with health care professionals.

#9 – We’re not saints!

No one expects to be a caregiver for a family member, friend or child. It happens because of a need! You take on the role for love, or you volunteer or have it thrust on you due to circumstance. Whatever the reason, we’re not saints for doing it, so please stop saying that!

I’d encourage every potential caregiver to have that conversation before taking on the role with your whole family. Then talk to caregiver groups/organisations to understand what the role entails and the impact on you & your family. The best place for your loved one is somewhere they are cared for, stimulated, engaged and comfortable.

Due to guilt or family pressures, don’t let yourself be pushed into a caregiving role.

#10 – We feel guilty

We feel guilty a lot – guilt at not being good enough, the guilt of losing our temper when frustrations boil over, guilt if they get injured, guilt if they’re having a bad day and you can’t help.

It gnaws away at you, makes you feel crap and yet you still have to get up, brush yourself down and get on with it.

You even feel guilty over the time you spent feeling guilty in the first place!

#11 – We’re tired

We’re always tired, not just from the strain of day to day caregiving but because sleep may become elusive when you’re a caregiver.

You’re always worried about something, which carries over into some form of anxiety and stress that disrupts sleep. Or it could be your loved one is having a bad time and unable to sleep, so you stay awake and watch over them.

We try to catch a nap when we can. This lack of sleep drains you, and makes it harder for you to function at 100% (let’s not talk about how we look!)

A full night’s sleep is something I crave, but on the other hand, it’s also scary. I read something on Twitter about how terrified someone was after a full night’s sleep in 25 years and raced to their loved one side, worried that something awful had happened to them. I get that.

I get scared not hearing mum’s gentle snore on the baby monitor. Those mornings when I go in to check her breathing and realise everything is ok, and let out a sigh of relief! No wonder we don’t sleep much.

#12 – We let things go!

If you come over expecting a tidy house, I’m sorry to disappoint you today is not that day. If you’re a caregiver, you’re going to try to make everything perfect.

You want to be perfectly dressed, groomed, clean house, entertain and be energetic, and I’m only talking about you! But the reality is we have to prioritise caring over cleaning some days. We have to prioritise making sure our loved one is washed, dressed, engaged, and not wandering or lacking purpose.

We pick our battles because our loved one comes first, so we will not get everything done.

#13 – We’re isolated

It can be a lonely existence being a caregiver, friends, and family drop away when your life is consumed caring for one with dementia. They find it difficult or feel awkward around your loved one or don’t know what to say, so they don’t come around or think to phone (not all friends; you have some who get it)

Our world is our home and now day centres are closed, so our options are limited. We’re isolated even more now due to the pandemic.

It’s very lonely, and sometimes people don’t understand how that affects you and your mental health.

#14 – We find it hard to forgive ourselves!

It’s hard to learn to forgive yourself after you’ve got angry, frustrated, lost your cool at a loved one or even wanted to walk out when it all gets too much.

We are our own worst enemy at berating ourselves at perceived failures. But caregiving is a learning experience. We’re going to make mistakes BECAUSE there isn’t a perfect way to provide care!

But we can learn from our mistakes and hopefully get better at it! And we need to get better at learning to forgive ourselves for having those feelings and thoughts.

We’re not superhumans, despite how much we try to be!

#15 – We need a good support system

If I go down, I need to know that someone can care for my loved one. If I need help, who can I turn to – that’s why we also need a support system.

People only see us as the support system for our loved ones with dementia. But we also need our OWN support system to prop us up and be that shoulder to cry on and make us feel better.

It’s critical to have some support system in place, whether with family, friends or others.

#16 – We find it difficult to ask for help

We can be afraid to ask for help because it may look like we can’t cope. Or believe we’ll be judged for not being able to soldier on and that we’ve failed.

If you’re struggling, ask for help from family, social worker, your doctor and your friends. People will be there for you, and isn’t it better to ask for help now rather than wait until you experience caregiver burnout and can’t function at all? You won’t be judged, and most people are eager to help but maybe don’t quite know how to offer it.

If you offer help, make it concrete rather than just a statement. E.g. I’ll come around on Wednesday so you can have some time for yourself, rather than let me know if I can help!

#17 – We rarely get respite

We may have got a few hours of respite from family and friends if we were lucky before the pandemic.

Now, it’s become much harder to get away from caregiving and get any respite at all. Places that offer respite have closed down, and we can’t be out and about for fear of making our loved ones ill. I can’t afford to get seriously ill. Who will look after my loved one if I do?

BUT We need to steal moments away, to go for that walk, to sit and read a book, or have time for reflection. Everybody needs that time to recharge, but it’s becoming or always was in some cases more and more difficult to get that respite, especially as government support is lacking!

#18 – We can forget about Self Care

Self Care is such an important step in caregiving and one we tend to overlook. Self-care is about making sure we’re ok both physically and mentally. We need to carve out time for ourselves, which sometimes feels impossible. But if we don’t eat healthily, get some exercise, talk, and let things out, we’re likely to get ill.

Practising mindfulness, meditation, and speaking to a counsellor can all help with improving your mental health.

Self-care is crucial in caregiving, so help us remember that and set goals to achieve it.

#19 – We celebrate the small wins

You’ll rarely hear someone telling you that you’re doing a good job. They may commiserate with you or compare themselves to you and inevitably say, “I could never ever do that” yes, I know! But they forget to take the next step and say, you’re doing a good job!

We all need encouragement, so it’s imperative as caregivers to celebrate our own small wins. It could be as small as getting properly dressed that day or managing to help your loved one to eat breakfast. Whatever it is, let’s acknowledge it – take a note every time you achieve a small goal.

Friends & family should really listen to us and comment on those small things. They may not mean anything to you, but they mean a lot to me.

#20 – We have carer’s rights!

Did you know as a caregiver, I have rights? I have the right to my own life AND to get the support that I need to help my loved one with dementia.

Our loved ones should be assessed and have a care assessment to identify their needs through Social Services. We should also get a Carers Assessment looking at how we live, ensure safe practices and what can be done to improve our situation.

If you’re lucky and your council isn’t cash strapped, you may be able to get professional carers in to help with personal care, medications etc. or even some respite time for yourself.

But the reality is that it’s hard to get that help, hard even to get an assessment, and in some cases, caregivers may not even know about these rights. For more info, check out my post, Carers Rights for Unpaid Carers!

#21 – Costs can be crippling

Caring for a loved one can be hideously expensive. The extra costs of meeting their physical & emotional needs can be astronomical. Today, for example, we have issues trying to keep our loved ones warm with increasing energy costs, equipment costs, extra costs in getting shopping during the pandemic, incontinence costs and much more.

“Nearly one in four carers (23%) do not have enough money to cover their monthly expenses”, according to Carers UK Study.

To take care of our loved ones full-time, we can get Carers Allowance. But even that’s conditional on if you care for someone at least 35 hours a week, they get certain benefits, and you don’t try to educate yourself for more than 21 hrs a week or get any other benefits that overlap. If you’re not aware of what you’re entitled to financially, read this Are you getting the right financial support with dementia

It’s a pitiful amount that can be wiped out with just one dentist visit, and it doesn’t allow you to save or have any luxuries. It’s much less than we deserve saving this government billions in extra care costs!

#22 – Time is elusive

Time – where does it all go? I start my day around 5.30-6 am and don’t finish until 10 pm on a good night but sometimes later, if, like me, your loved one is having a bad night and not sleeping. You’d think with all that time you get loads done! Nope, somehow your day is consumed with reacting or preparing for the next situation.

If you’re caring for someone with mid to late-stage dementia, you really can’t leave them alone for long due to safety reasons, e.g. wandering, falls or not seeing the risks in their actions. Or you may have someone who has attachment issues, so you can’t be out of sight from your loved one without them fretting or worrying about where you are.

That’s it, are you surprised by this list or do you have anything to add? Let me know!

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