Life After Caring

Being a carer is often a challenging and difficult journey. There are usually two major ways the caring role transforms – the person moves into a residential care facility or they reach the end of their life.

Through Carer Support, a group of past carers came together and were supported to share their experiences, advice and suggestions to help others get through these difficult times. Below is a summary of their work (full copy here), providing tips on what to do while still in a caring role such as making sure your affairs are in order (plan ahead), why and how to access respite and information and advice about residential care.

With lived experience of a person passing away, our carers provide personal advice on when they have gone, from what you need to do in the first month to managing the funeral. They also offer practical suggestions on what helped them get back on track, from thought provoking ideas, to suggestions about volunteering, employment and going on holidays.

Being a carer for someone can take over your life. This can happen immediately or increase gradually over time. Often family or friends drift away as they do not know what to say or do, or you are unable to get out and connect. It may seem too hard to think further ahead than the next day, but there are a few things you could do to help yourself.

“I had the foresight to see once my husband became ill; my life was going to change forever. I was no longer the lover carer; I was now the mother carer. I went to the bank, to Centrelink, my G.P and asked: my husband is ill and he is never going to get better, what can we do now to prepare for the future? I discussed our mortgage, our pension, our future income and received advice to assist us to prepare for the future. Preparation is the key while you are still caring”.

While you are still in your caring role, it is important to discuss yours, and your partner’s wishes, if either of you were to pass away.

An Advance Care Directive is a legal document that allows people over the age of 18 years to:

  • write down their wishes, preferences and instructions for future health care, end of life, living arrangements and personal matters and/or
  • appoint one or more Substitute Decision-Makers to make these decisions on their behalf when they are unable to do so themselves.

For more information and DIY kits, click here.

Create a will and update it regularly. Making a valid will is the only way you can be sure your property is distributed according to your wishes after your death or that of a loved one.
“When I was caring, my wife was number one, I became so involved with caring for her, I shut everything else out. I didn’t want to leave her with a care worker or in respite. When she passed I was devastated, there was a huge void in my life. I didn’t have anyone or anything in my life. I should have tried to get out and make connections while I was caring”.

‘Respite’ or ‘respite care’ is when someone else takes care of the person you care for, so that you can have a break. Ranging from hours to days, this break can give you time to do everyday activities or just to relax, deal with stress and look after yourself. Carer Support can provide respite services for people over 65 and activities for carers of any age. Planned and regular respite is a good way of you both getting a break.

Plan for the unexpected and complete an emergency respite plan - make sure you tell others where it is kept.

Moving from home and into the permanent care of another is a difficult decision, but there may come a time where a persons needs exceed what can be met within the community and they need to move into residential care.

Which facility to choose is a personal decision but this list of questions to consider, prompts a few areas which you may like to review when you create a short list of places to visit.

MyAgedCare has a full list of approved aged care home and can provide useful information and a starting point to locate ones that might meet your needs.

Visit the home in person, to get a real look and feel for the place, the staff and the other people who live there.

Moving day tips:

  • Seek support from a trusted person to accompany you on moving day.
  • Consider how you might assist the person moving in to feel more relaxed about moving day.
  • Dedicate the whole day to the move, remembering that you will be emotionally and mentally fatigued-have a plan for what you will do when you leave that day.

When the person you love and care for passes away, others may understand your grief at the loss of the person you cared for, however they may not understand the loss you feel at no longer being a carer. It could be overwhelming to consider where you begin to pick up your life, dealing with the personal loss but also the loss of identity, role and purpose.

“Let yourself grieve, let yourself cry, as it helps release pressure. Your friends will understand, but if they don’t, they are not your friends”.

The first month

There is a long list of people you have to inform when someone passes away. Some need to be informed immediately while some can wait. A list of who to contact can be found here

Get 10-12 certified copies of the death certificate as many need to be sighted/ kept by organisations.

The funeral

The funeral can be a huge responsibility and can initially distract from the full extent of your loss. There are a lot of decisions to be made from burial preferences to service details.

Consider sharing the responsibilities and actions for the funeral with family and friends.

After the funeral, life can return to normal for others- they go back to work or their family commitments. It is particularly important to take care of yourself at this point, as the reality of your loss can feel overwhelming.

The grief process affects everyone differently, at different times. Seek professional help from your GP, a psychologist (link to our resource) or a helpline such as Griefline or Lifeline.
“Remember how fortunate you have been to have had this person in your life, however short. Celebrate their life by living the rest of your life to its fullest.”

Staying at home while you are grieving can seem the safest place to be, but over time, the more you stay at home the harder it is to get back out into the world. Using respite services to get out, maintain interests and friendship groups when you are still caring will make it easier at a later date.

Try accessing Carer Support services to maintain or grow your social networks.

Back on track ideas

Past carers suggest these questions to help stimulate ideas- take time to consider and write down your answers:

  • What did you used to like to do before caring? E.g. sport, walking, art, travel
  • What are you good at? What qualities do you have? E.g. caring, accounting- how could you use these skills?
  • What is going on in your local community? E.g check out council social programs and groups.
  • Do you want to learn something new? Study? Skills? E.g. is it time for a new career or passion.
Don’t think about it too much, be brave and just do it-it gets easier each time you do it.
If you are nervous about joining a group, try going to events like the cinema or football. That way you are out, but there is no pressure to chat if you’re not ready for it.

Volunteering

Volunteering has positive effects for communities, can be very meaningful and enjoyable, and is good for your mental health and wellbeing. Volunteering also gives you the opportunity to meet new people and practice your social skills.

Volunteering should be a two way street- benefits for you and those you volunteer for. Look for a good match in relation to skills, passion and commitment required. Volunteering SA can help you find the perfect role for you.

Employment

Getting back into the workforce can seem quite daunting depending upon how long you have been out. Old skills and knowledge may need a refresh, but you will have also developed new skills during your time as carer. The good news there is a lot of support available from how and where to look for work, to updating your CV.

Career Transition Assistance is for people aged 45 and older, and will show you how to use your skills and experience to your advantage when applying for jobs.

Holidays and short breaks

Going on holiday by yourself after losing the person you cared for can be very difficult. Holiday times and seasons, such as Christmas, will be different and they may be emotionally difficult, especially the first ones. Some people find strength in long established traditions while others may choose to avoid customs of the past and do something new. It’s okay to do things differently.

Listen to yourself, trust yourself, communicate with your family/friends, and do what works for you.
Consider travel companies that specialise in trips for single people, they can reduce the stress of planning a trip and you can choose how much you mix with others.

Carer Support does not specifically endorse any organisation, association or entity referred to in, or linked to, the Online Resources. Views or recommendations provided in linked websites do not necessarily reflect those of Carer Support and Carer Support has no responsibility for the content of the linked website(s). It is your responsibility to make your own decisions about the currency, completeness, accuracy, reliability and suitability of information contained in linked websites.