Having a parent affected by dementia can be emotionally and physically demanding. For most families there is another parent to rely upon as the primary carer and the grown up child/children merely act as additional support or respite care, but for some, that main carer can start to show signs of mental health deterioration as well and suddenly the role of the offspring or other family members is moved up to primary carer. Trying to maintain a family, job and life whilst caring for two parents who need a large amount of support can turn a life upside down and be totally exhausting.
At first it can feel like you’re a rabbit caught in the headlights and the burden can seem overwhelming. Many people feel alone when trying to care for parents with unpredictable and sometimes very aggressive behaviours, as well as a wide variety of symptoms, particularly if there are no siblings or siblings that refuse to help.
If this is a situation you find yourself in, the most important thing to do is to seek out help. Even if you are unsure about getting professional help caring for your parents, reaching out to local carer groups and making time for peer support can be a great way to find the support you need to help make the next steps. You are no help to your parents if you get ill from exhaustion and stress, so the priority is making sure you have the help you need. Neglecting your own needs to see to theirs does not benefit your parents in the long run.
Being prepared is also important – paperwork, legal and social care systems will need to be dealt with. It may be that you have to start claiming benefits on behalf of your parents in order to apply for some services. Admiral Nurses are a great help for these aspects of the Dementia journey – if you are shouldering the burden alone they can be a life line and someone to help guide you through the maze of paperwork and help when it comes to making decisions regarding Care Homes and Hospices. If you are not in an area serviced by an Admiral Nurse, you can always ring their help line which is manned seven days a week 0800 888 6678.
Taking control of your parent’s decision making is another key action. If you have no Power of Attorney for financial and health care in place, you may have a much harder time helping your parents and will have a greater need for help from social services or may even require a court order. These kind of developments can make you feel very guilty and the weight of that responsibility could potentially affect your own mental health. Try reaching out to trusted individuals, either family, friends, a spiritual leader or other trusted person who may be able to help you. This can be particularly helpful if your parents aren’t able to recognise that they need such help.
Although it can feel like it, you are not alone. There are a number of organisations out there to help and guide you through such a tumultuous and emotional time. If you don’t feel able to speak to anyone, there are also online forums where other people who have been in your situation can offer personalised advice and reassurance.