Caring for you
Caring for someone with dementia can be hard. As dementia progresses the person you are caring for will need more and more support. Sometimes, if someone’s cognitive ability is severely impacted it can be unsafe for them to be left alone or for them to go out on their own, which means that you – their carer, will have to spend more of your time caring for or supervising them.
Feelings of grief and loss
It’s very common for family caregivers to experience feelings of loss and grief as their loved one with dementia changes. You are entitled to these emotions and shouldn’t feel guilty that you feel this way.
Some common feelings that you might experience are:
- Not accepting that your loved one is ill
- Thinking that they will get better
- Attempting to normalise some of the symptoms
- Feeling frustrated with your loved one
- Resenting the demands of caregiving
- Resenting family members who cannot or will not help provide care
- Feeling abandoned by everyone close to you
- Having unrealistic expectations of yourself
- Feeling guilty because you are still able to enjoy life at times
- Having regrets about aspects of your relationship before the diagnosis
- Feeling that you have failed if you cannot care for the person at home anymore
- Having negative thoughts about the person or wishing that he or she would go away or die
- Crying frequently
- Being overwhelmed with feelings of loss
- Withholding your emotions or displaying them more openly than usual
- Withdrawing from friends and family or not wanting to join in social occasions
- Learning to live in the moment
- Finding meaning in caring for someone who is terminally ill
- Understanding how the grieving process affects your life
- Appreciating the personal growth that comes from surviving loss
- Asking for and accepting help from others
Your wellbeing is important
It’s really important that you look after your own wellbeing – which is easier said than done, but it is essential that you take care of your own physical and mental wellbeing, and try to prioritise some time for yourself.
Make sure you are claiming all the financial support that you and your loved one are entitled to, as this could help to pay for respite care to enable you to continue to do the things that you love.
There are care at home agencies that can provide a sitting service, to sit with your loved one to give you a break, or they can come and take your loved one out for a walk or for a coffee. There are day care services where your loved one is picked up in the morning and dropped home later in the day. You may also be entitled to residential respite for your loved one to enable you to take a holiday. Some of these services might be free or subsidised depending on your loved ones care needs and financial position.
Also, look for things that you can do together, but where there is help on hand to take some of the pressure away from you. There are lots of social groups, activities and events for people living with dementia, some are for you both to enjoy together, whilst some are specifically for dementia carers to enable you to meet others in the same situation. Talking to others can be hugely therapeutic and make you feel less isolated. You can find social groups, activities and events on our event calendar here
Local authorities have a duty under the Care Act 2014 to promote and maintain the wellbeing of both the person with care needs and the carer. If you are giving necessary care for a family member or friend (i.e. if you were not giving that person care would they be able to manage their day-to-day living activities without you), then you have rights under the Care Act 2014.
A carers assessment looks at how caring affects your physical and mental health, and if there is a negative impact on your wellbeing that affects you being able to work, care for other members of your family, maintain positive personal relationships, or participate in leisure activities.
You do not need to live with the person you care for in order to have an assessment, and the person you care for does not need to have their own care assessment in order for you to get a Carers’ Assessment. Carers’ assessments are free and available to anyone over the age of 18 years. Contact us or give us a call on 0344 324 6589 for more information about a referral.
Your rights at work
As a carer, you have protection against discrimination. Under the Equality Act and Human Rights Act you have the right not to be discriminated against because of your caring responsibilities.
You also have the right to request flexible working, and the right to time off for emergencies.
If you need to work your hours over fewer days or start and finish earlier to enable you to care for someone your employer must give your request proper consideration. If they decide not to grant you flexible working they need to give you a explanation as to why.
Whilst your employer must give you time of for emergencies, this time is unpaid, unless your employer includes paid carers leave in your contract of employment.
Paying for care
People often worry about the cost of their home being taken into consideration to pay for the cost of care. The family home will only be considered if the person needing care will no longer be living there and there is no spouse, partner or dependants living in the property.
Any financial assessment that needs to be done will only be based on the income and capital of the person needing care. The finances of family members is not taken in to account. If finances are held jointly with a spouse or partner, the assessment will only take half in to consideration.
If you care for someone at least 35 hours per week you may be entitled to carers allowance. You do not have to be related to, or live with the person you care for. It is currently £69.70 per week.
If you live in a Hampshire County Council postcode, you may be eligible for their Take a Break scheme, which is 3 hours of respite per week funded by the council. You will need to have a Carers Assessment to see if you are eligible. To check if you are eligible contact the HCC Duty Team on 0300 555 1386 and ask them to tell you more about this service. You may also be eligible for longer respite depending on the outcome of your carers assessment.
Carers IW offer various respite options for carers who live on the Isle of Wight. Visit https://www.carersiw.org.uk/ or call them on 01983 533173 to find out more.
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