Looking after a loved one living with dementia may feel like a long and lonely experience. As you navigate appointments, medication, difficult days and the underlying worry on good days, it’s important to consider what you need to maintain the level of support required.
It’s important to know that as someone providing primary care to a loved one living with dementia, it’s okay to ask for help. You deserve to have people who can share the load and build your own support network.
Why people wait too long to ask.
Many caregivers may already have a support network but may feel unable to ask for help. This may be for a number of reasons.
They may feel guilty about seeking support, as though asking for help indicates they’re not coping or not doing enough.
They may feel like seeking support means they’re giving up on primary care or feel out of control of the situation.
They may not know what help is actually available to them or they may simply not want to feel like they are a burden to someone else.
None of these experiences are failures. They’re simply the cost of caring deeply for someone.
Who can be part of a support network
When you’re creating a support network, you may think one person may be plenty, but we’ve found that carers who have the best support networks often include a range of support, where each person or service contributes to lessening the load in their own way. You may wish to include the following people and services in your own support network.
Family and friends
Even those who may not be able to help hands-on, may be able to contribute through a small service, such as running an errand like doing the groceries, sitting with your loved one for a short period of time so you can take a break, or simply being a listening ear for you when you need it.
Your family GP
Talking with your GP is a good starting point to check in on your own wellbeing and identifying what support you can access, in addition to that of your loved one.
Respite care services
Taking advantage of local respite care services for your loved one can be a great help. Placing your loved one in respite care for a short break, gives you time to take a break, without guilt, knowing your loved one is in safe hands and is well looked after by people who understand what is required to care for someone in their condition.
Support groups
Being able to meet with other people who are facing a similar situation can be of great help. When you don’t need to explain the effort and intricacy involved in caring for someone who is living with dementia can help you feel understood.
Being part of a support group gives you a safe space to share experiences you may have thought were yours alone. Hearing from others who have walked the same road can also help you learn new ways of handling difficult or unusual scenarios that may arise further down the road.
Neighbours
If you have a good relationship with your neighbour, a simple call for assistance may open up a new level of support you didn’t know was available. Often neighbours are more willing to help than you may expect if you let them know what you need.
Your local community group or faith group
It’s easy to forget these groups as a source of support, especially if providing primary care has meant stepping back from the activities that once connected you to them. But many families find that a church, temple, mosque, or community group becomes one of the steadiest parts of their network, because they already know you, and already care, not necessarily because they are trained in dementia care. This support can look different depending on what your community offers.
Many congregations are practised at organising a roster of visits or meals for members going through a hard season. A simple message to a minister, elder, or group coordinator is often all it takes to get started. Meals on wheels is also a great service to call on.
A familiar face from church or the local community centre to sit with your loved one, even for an hour, can give you a genuine break while your loved one stays somewhere they feel comfortable.
Providing transport to appointments or to the group itself, if getting there has become difficult.
For your loved one, staying connected to a faith or community group they’ve belonged to for years can be deeply grounding, even as other things change. Familiar routines, music, and faces often reach people in ways that newer routines can’t.
Long-standing community groups have good practical knowledge and often know what’s genuinely available nearby. A good respite service, a GP who’s easy to talk to, or another family nearby who would be glad to share what they’ve learned.
If you haven’t already, it may be worth letting your group know what’s going on. Most people want to help but don’t know how and simply aren’t aware there’s a need unless you tell them.
How to get started
Building a support network doesn’t need to be complicated.
It can begin with an honest conversation with someone close to you to talk about how things are going, a phone call to ask what support or respite services are nearby or asking someone to step in for an hour for you to take time for yourself.
A short, honest message is usually enough.
“Mum’s living with dementia now, and some days are harder than others. If anyone has an hour to spare or would like to visit, it would mean a lot.”
You may be surprised how many people step forward to help support you with primary care. It may be difficult to get started, but know that each step makes the next one easier.
You don’t have to do it all alone
At Ambridge Rose, we’ve seen how much of a difference it makes when families connect with others in a similar situation. Our own family support groups grew out of exactly this need, people who wanted somewhere to share, learn, and be understood in a supportive environment.
If you’d like to know more about the support we offer, our door is always open.
Reaching out isn’t a sign you’re struggling to cope. It’s a sign that you understand the importance of taking care of yourself so you can be in the best position to take care of the person you love.