Grieving for the living may be difficult to comprehend but it is a distressing circumstance that can potentially affect many of us in our lifetime; especially those who care for loved ones with incurable conditions who change in character and deteriorate in mental and physical capabilities. Families who deal with severe illnesses like dementia, cancer, Parkinson’s disease, motor neuron disease, as well as life changing injuries and addiction, are all too familiar with living grief.

There are a few terms to define grieving for people who are still alive. In the US, the terms are ‘unconventional grief’ or ‘ambiguous grief’ and in the UK we refer to it as ‘anticipatory grief’. ‘Living grief’ is another expression which is often used.

Research and information is limited on this subject because it is not something that many people talk about, but this blog looks at grief experienced by a carer and the loved ones of someone with a terminal illness.

What can cause living grief?

From diagnosis, people will experience the stages of grief (shock, denial, bargaining, guilt, anger, depression and acceptance¹) and unfortunately experience them again when a person has died; in other words, losing a person twice.

'Most of us think of grief as something which happens after a death.  In fact, grief can start a long time beforehand, but this is often not acknowledged, talked about or even understood.  When a loved one receives a terminal diagnosis, grief can begin right there and then.  All the feelings and thoughts experienced at this time can be just as intense and difficult as those after a death.'

www.mariecurie.org.uk

With the deterioration in health of a loved one comes the realisation that ‘normal’ life will change irrevocably. It isn’t easy to prepare yourself for what is to come. Grieving for the following reasons can be common:

Seeing a loved one deteriorate - Over time a person loses what makes them who they were, whether it be in their character, mental or physical capacity.

Adjusting the normal routine - Specialist care equipment could fill the house, the sufferer may have to move downstairs, hours of physio, meals that need to be pureed, clothes that define a character may be swapped for night wear and help with personal care. These are just a few examples of adjustments that can contribute to overwhelm and, ultimately, grief.

Illness forces a change in relationship - A spouse may become the full-time carer to their loved one, a new dynamic which seems more like a parent and child relationship. The loss of connection will be hard to deal with, along with not loving them in the same way, whilst intimacy may go. Equally, the actual roles of parent and child may be swapped around due to the onset of age-related conditions such as dementia, Alzheimer’s or Parkinson’s disease.

Not being recognised - This is common with dementia. When the sufferer deteriorates, their ability to recognise their loved ones diminishes, which causes extreme heartbreak for the family. A truly traumatic consequence of the condition.

Loss of future plans - With the change in relationship dynamic and decline of physical and mental capabilities, plans made or bucket list dreams can often be put aside to concentrate on caring for the person.  Mourning the loss of retirement plans can be common with older people as working hard to save for retirement would have been in vain.

Loss of shared experience - Sharing wonderful experiences with loved ones is a basic human need.  Holidaying with your friends, family celebrations, being part of a team or club, shared hobbies brings us together and reminiscing about these shared experiences keeps the memories alive but sometimes the memories are just yours to hold.

Loss of a confidant - You may have once relied on the person for sound advice. They may have been your partner in crime or person to share your problems with. Dealing with personal issues without them guiding you can make you feel lonely.

Realisation when the situation isn’t going to get better -  In the early days of a diagnosis, there are times when you believe that medication or human tenacity can help cure or improve a person’s condition. But once the initial stage of grief, shock and denial, has passed, the realisation that things will only get worse will be traumatic.

Putting personal affairs in order - Final and unavoidable tasks needed to deal with end of life. This can often be the final stage that brings the loved ones' situation into reality. Dealing with this can be extremely upsetting.

“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.”
Kristi Hugstad, author, speaker, certified Grief Recovery Specialist, and host of “The Grief Girl”.

How guilt and grief can be linked

Feeling guilty can be part of the grieving process and as a carer, family member or friend, guilt can play a part of everyday life, including the following scenarios:

• Wanting your loved one to die peacefully and not suffer anymore.
• Believing you are not caring for them as best you can.
• Not being able to care for the person anymore so they have to go into care; you feel you have let them down.
• Losing your temper with the situation, the disease and their decline.
• Not feeling the same towards the person anymore.
• Not communicating with them in the same way.
• Unspoken thoughts and feelings.

Grieving for your own changes of circumstances but also learning to appreciate positive impact on self.

When someone you love is diagnosed with an incurable condition, you are not just dealing with the heartache and grief of their diagnosis but also your own change in circumstance.  The biggest change is your role from husband, wife, son, daughter or friend to primary carer. According to Carers UK, 6.5million, or 1 in 8 adults care, unpaid, for family and friends. If you have become a carer you could be grieving the loss of certain parts of your old life.

• Career to carer - giving up a job and career to become a full-time carer is a huge sacrifice especially if a lot of time has been invested in developing yourself in your profession. A change in salary could also affect all aspects of your own family’s life.
• Loss of social life - turning down invites, not seeing friends as much, missing out on personal time, forgoing holidays and neglecting your own health.
• Isolation and independence - if a loved one is house bound then the carer will also be spending a lot of time indoors. This can lead to a feeling of isolation and separation; particularly from friends and every-day life.
• Inability to forge new relationships - for many carers, the lack of intimacy with others can be hard. For the children of the loved one, the want to still date and start new relationships weighing up against the inability to leave their family member alone, along with the uncertainty as to whether a new partner will appreciate the time required to provide care, can feel like a mentally taxing struggle.
• Loss of identity - Your life revolves around caring for someone else.

These feelings of loss for your changes in circumstances may not be long lasting and some carers may not grieve for these changes at all. Becoming a carer can have a positive impact. You will learn a lot about yourself mostly that you are a kind, loving, adaptable and strong individual. In many cases, a serious illness can bring families closer together as they are connected in grief. Families can all contribute to the care of a loved one.

You can also help others.  You can demonstrate empathy and understanding for people in similar situations and you will gradually realise that there are a lot of people and organisations that will want to help you too. You can be comfortable in the knowledge that you are not on your own.

We are always looking to support those caring and providing care for MedicAlert members, whether it be loved ones or paid carers. This is why we have two specific service elements dedicated for carers:

• Carer ID - Available in 2 designs, this ID highlights that the wearer cares for someone who may be vulnerable and links to the members MedicAlert account, so they're known about and provided with care should you have an emergency.
• Emergency Care Plan - We know that many MedicAlert members have carers, who worry about what might happen should they have an accident. This form can be stored on the members MedicAlert account and will help you to plan for the unexpected so the person you care for receives appropriate and continuous care.

How to manage and cope with with living grief

Allow yourself to grieve - It is ok to not be ok. Take time out for yourself to cry, reflect, sleep, and be angry or the other ways that help you to grieve.

Tell others - Inform people close to you so they can help, provide support, know why you may be having an off day and to lessen the feeling of isolation. If friends are saying you are strong, you are possibly not communicating that you are feeling loss, sadness or grief.

Hold on to your memories - If an illness is long and drawn out it will become harder to remember how the person used to be. Look after your old photographs and continue to photograph and video moments with them. Making recordings of their laugh, their voice, their versions of stories so you can have a record will be invaluable, especially people who are diagnosed with conditions such as Parkinson, dementia and motor neurone disease where their ability to speak lessens as the condition gets worse.

Live in the moment - Try not to let your thoughts linger on the future without your loved one. Spend the time being present with them and appreciate the time you have left.

Self-care - Look after your own health and wellbeing. You won’t be valuable to the person you are caring for if you are not well yourself. Respite care should be considered to help you and your loved one; it will give you time to grieve away from them.

Connect with others who have experienced the same feelings of loss - People in the same position will be able to relate to your experience which will be comforting.

Always remember the illness is not the person - Separating a person from a condition is difficult, especially as the illness has changed your loved one but that person is still your parent, relative or friend and should always be treated with love and respect.

When someone you love is told they have a debilitating or deteriorating condition, a period of shock is likely to follow. Sometimes a sense of relief too, in finally finding out what is happening. Even as you adapt to this news, you may grieve from this early stage and throughout the course of the disease.

“Our grieving started once my husband was diagnosed.” Carer, supporting a person with MND

Professional help with dealing with grief

There are organisations that can help you deal and manage grief, before or after a death. Cruse and Mind are just two. There will also be support on grief and bereavement from charities associated with specific severe illnesses. Ask for help from your GP who can refer you to a counsellor and seek out local support groups.

How can MedicAlert support you?

Being a member of MedicAlert can help relinquish you of some of the mental burden. MedicAlert offers an advocacy function so a member can nominate a loved one to help manage their medical records, invaluable to someone who is living with a deteriorating disease.

All MedicAlert members wear an engraved medical ID, detailing the members most vital medical information. This, along with the full medical record which is available to first responders 24/7 worldwide, enables those caring for your loved one in an emergency to make initial care decisions based on their unique needs.
If communicating is becoming a challenge for your loved one, wearing medical ID jewellery can offer peace of mind for them and for yourself, as you know that  correct care can be administered in case of emergencies without delay. This will also allow you to occasionally step back and use respite care, knowing that all their vital medical information is to hand when you are not together.
To support those caring for a member of their family, MedicAlert offers an advocacy function. This allows a member to nominate a loved one to help manage their medical records, invaluable to someone who is living with a deteriorating disease. So you can rest easy, knowing their information remains up-to-date and ready for when it is needed most.

If your loved one is living with a degenerative condition, click below to join MedicAlert