The hidden side of caring for someone with dementiaSep 10, 2021
One side of dementia that isn't talked about as often as it should be are the feelings of helplessness, confusion, loneliness and despair which can build up over time. These feelings can affect both the person with dementia and also their caregivers. We meet many people who never anticipated that they would find themselves thrust into the role of a carer and are now experiencing burnout, exhaustion, guilt, or resentment.
We have met some people who confess that they never expected their passage into older adulthood to be taken up by looking after someone (most often their spouse or parent) who may express difficult behaviours and act differently to the person they knew them as before. Feelings of guilt are common, people feel guilty that they're not doing enough for the person with dementia, they feel guilty that they aren’t looking after themselves, or that they have started to dislike the person they have to care for. To add to this, they often then feel additional guilt that they aren’t coping with these feelings as they feel they should. Being a carer is often consumed with feelings of inadequacy, guilt and resentment.
Some people share with us that night times are particularly difficult, and can feel endless with every sound in the house heightened and a sense of isolation while the rest of the world seems to be sleeping peacefully unaware. It might feel impossible to imagine that anyone else can understand the sheer exhaustion of having to care for someone else hour by hour and night after night, all while being exhausted yourself. There are worries if your loved one will go to sleep and stay asleep, or if they will get up repeatedly through the night to do things around the house. This persistent feeling of anxiety and unpredictability coupled with sleep deprivation can easily become all-consuming.
Here at PACT we want you to know that you are not alone and we understand how you are feeling. While little can be done about a diagnosis of dementia, if you are a caregiver it can be very helpful to develop a community of other people around you who are in similar situations. There are many different support groups which meet on the phone, online, or in person. It can be very tempting to stay cocooned at home with your loved one, but isolation can lead to its own challenges and pitfalls, including a road to burnout if you have no one to share the highs and lows with. Sometimes just being able to reach out to someone for a much needed rant, cry, talk, or laugh can help diffuse a situation and provide comfort. Meeting others in the same situation is also a great way to share information about services or products which may be suitable for the person with a diagnosis, and their caregivers. Even if it feels overwhelming to reach out to these groups, sometimes the first step is the worst and it will become easier over time.
We hear a lot of people express frustration at the current care system in place, which doesn’t always provide adequate support when you really need it. Finding effective support shouldn’t leave you feeling helpless or like you have to fight at every step. It can be difficult to remember when you are in the middle of everything, but this is not your fault and you are not failing. You are simply doing your best in the circumstances, and you are not alone. There are many others on similar journeys, and a problem shared is a problem halved.
If you ever want our support, we will help design a bespoke intervention package for the person with dementia which also takes your needs into consideration. You are important too, and we want to make sure everyone is supported as best as possible without judgement.
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