Ambiguous Grief
Please be mindful that the information below includes information that you may find difficult or distressing to think about. Looking after yourself and your emotional wellbeing is vital. Please see the ‘looking after yourself’ section below for tips and support.
This information was co-produced with LPFT's Carers Council and will give you information about grieving while someone is still alive.
When someone close to you changes in some way due to mental ill health, physical disability or illness, it can leave you struggling with a whole range of emotions. You are unlikely to consider that you might be grieving, but it is common for people to go through the grief process, even when the person hasn’t died. This is what’s referred to as ambiguous grief.
You may experience sadness and yearning, anger and guilt, alongside a wide range of other emotions. Just in the same way as grief following a persons death, these emotions can be incredibly complex and change quickly over time.
Ambiguous grief is made more complicated by the fact that the person is still around but may be very diff erent and their current communication, personality or behaviours may lead to you questioning your memories of how they were before. You may even feel that you current experiences with the person start to over-ride and ‘fade out’ memories of them before, which can be particularly tough.
In the same way that you might not recognise your reactions as grief, those around you might not either. This can be isolating or feel invalidating if others do not acknowledge or understand what you are going through. This might be people trying to help you feel better by saying things like “at least they are still here”, without understanding the impact that this has when the person you love is so different.
Initially you might notice that your reaction is about the loss or change to the person you knew before. As time goes on, you may also notice that you start to grieve for the things you have lost, had to sacrifice or what ‘could have been’ due to the change in the person you love and care for.
Remember that the present doesn't override the past
It may be tough but it’s important to find a way of holding on to the positive memories of the person they were before. This might be through talking to others, looking through photos and videos or writing down memories in a diary or scrap book.
Having something to remind you on some of the more challenging days that how things are now is not how they have always been.
Changes to your relationship, their behaviours or communication with you do not invalidate the good from before, but upsetting or hurtful interactions can make this seem very difficult.
Understand that the illness isn't the person
It’s a very normal and understandable reaction when things are difficult to become frustrated or blame the
person for what is going on.
Try to remember that what is causing the change to their behaviour is an illness and not a choice or a reflection on how they feel about you.
Acknowledge the grief and pain of the loss
It’s important to allow yourself time to grieve the loss you are feeling. This can be tricky when society doesn’t always recognise this kind of grief, or worse considers you lucky to “still have them around”.
Prioritise time for self-care, either alone or with those close to you. Remember its ok to ask for help if you
need it.
Be open to a new type of relationship
When a person changes so significantly, you are likely to find yourself wishing for the person they once were and the relationship you had with them.
Being open to the inevitable changes that this will bring to your relationship might feel like ‘giving up’ or like it’s a really bad thing. However, looking for small things in the relationship where you are able to find some joy or gratitude can be really helpful.
This will not always be easy and some days it will feel impossible, but in the long-term trying to find a way of embracing the changing relationship will be important.
Connect with others who can relate
Finding people who are able to understand what you are going through and off er some support might feel impossible when those around you struggle to acknowledge your grief.
There are support groups for caregivers of those with a life-changing diagnosis such as dementia, mental illness or duel diagnosis, where you are most likely to fi nd people who you can relate to.
Useful tips
Feel your grief - Grief is not a linear process and can feel like a rollercoaster. Be kind to yourself and acknowledge feelings as they hit. You will start to notice that your emotions start to feel less frequent/intense as time goes on and you find a way to re-engage with life. Glenn Brynes, Ph.D. says, “When someone we love is gone from our lives, it is as if a piece of us has been torn away. The loss rends the fabric of our lives, and the wound must be repaired. Grief is the process by which our minds heal this hurt.”
Hold your memories close - Whilst it’s not helpful or healthy to live in the past, holding on to positive memories and finding a way to connect with them can help in a number of ways. It can be positive for you as well as helpful in reminding you that the person you love is changed through illness, not choice.
Accept the new normal - For some people, accepting that changes have occurred are a quick and obvious part of the grieving process. For others, acceptance of a ‘new normal’ can be long and painful, but is important in moving forward in a healthy way. It will enable you to focus on the present, recognise and note things that bring gratitude, as well as being crucial in identifying areas where you need a bit of help or support.
Practice self-care - Be mindful of your own emotions and capacity to cope, which will fluctuate day to day (sometimes more frequently!). Caring for someone else can be all consuming, so make sure you find a way to take a break when you need it, whether this is going out for a massage/walk/coff ee with a friend or cooking a meal you enjoy, reading a book or keeping up with your favourite TV show.
Seek support - Kristi Hugstad, author, speaker, certified Grief Recovery Specialist, and host of “The Grief Girl” show says, “Grieving the living can be a lonely, isolating process because often, the support system you receive when a loved one dies isn’t there; people don’t understand or relate to your loss the way they would if a funeral was involved.”
Finding someone you trust to be able to share your thoughts and feelings is an important part of taking steps through the process of grieving and looking after your own wellbeing. If you struggle to fi nd this within your friends and family, reach out to a professional, a support line or carers group. It takes time and is a painful process worrying through grief, whatever the circumstance. Be kind and patient with yourself and know that you deserve to feel supported in working through whatever emotions come to you.
Looking after yourself
It’s important to look after yourself. If you are not well, either physically or emotionally, then it makes it very difficult for you to care for someone else. If you are struggling it is important to seek help.
Below are a few tips that you may find useful to support your own wellbeing.
- Take time for yourself and do something that you like, even if it is for 30 minutes or an hour a day (e.g. read a book or have a relaxing bath).
- Find someone to talk to. Having a friend or peer to offload to can be really beneficial to your own mental health. You could also join LPFT’s carers WhatsApp group, which consists of LPFT carers who support each other and will understand what you are going through. Email donna.
bradford to join.@nhs.net - Join LPFT’s carers education and support group and learn about your relative’s condition, how services are run, and meet others in similar situations to you. Email donna.bradford@nhs.net to join.
- Email the LPFT carers email address and let us know that you need some support - lpft.
carers @nhs.net - Ask about family therapy available through the Trust.
- Take courses through Lincolnshire Recovery College. There are lots of courses suitable for carers.
- Remember the Samaritans are also available if you need support.
