Grief is often felt by Spousal Caregivers when loved one is still with us

All people react to illness, caregiving, grief and loss in very individual ways. Even when circumstances are similar, and an ending comes into focus, each person in the family and those people all around them, will experience grief differently and act in their own manner.  The natural reaction to loss is grief. Moving from the role of spouse or adult son/daughter into the role of caregiver is a challenge in itself. For those taking care of a loved one it is simpler in the beginning. The person you are assisting is likely more present and engaged. The physically of caregiving is less taxing in the beginning and the caregiver him or herself is usually not run down.

Continuous and Increasing Loss

This type of loss, when the person is still living and likely in the home usually occurs with degenerative conditions such as Alzheimer’s Disease, Parkinson Disease, other forms of Dementia, ALS, some Cancers, Multiple Sclerosis, Sever Stroke, COPD or Heart disease among others.  Even with the best care, support systems, attitude, and a good quality of life the care partner knows that their husband, wife, sibling or child will decline over time. They are aware that different levels of care will be needed and decisions made. In many Caregiver Support Groups facilitated by Paradise Home Health Care, the issue of grief and loss are often present. There isn’t bereavement, there aren’t the thought processes of closure and moving forward yet because there hasn’t been a death, though the person they married and have loved is not there either. Feelings of loss and grief are for what was, and what won’t be; according to how it was imagined and even counted upon. Instead there are incremental losses of physical ability, cognitive capabilities, personality traits, personal engagement, finances, friends and the caregiver’s knack of keeping it all together. The “we” becomes “I”.

Stages of Grief Care Partners Experience

Doctor Kubler-Ross‘ stages of grief still apply: Denial, Anger, Bargaining, Depression and Acceptance. These stages are in a sequence but each person may experience the sequence in a different order and jump back and forth between stages. What is hoped for, with varying degrees of outside help and inner strength is to gain acceptance of the loss, to grieve and to move forward as life goes on. Intense feelings of pain and grief do subside. Life and the other people in your life loom larger as acceptance is gained.

With progressive diseases, family members will begin feeling “anticipatory grief” much earlier than at time of death. They will start grieving for the loss of the person “they used to know” or who “they married” – the person’s former self, who they were. This type of grief, if unchecked or not addressed can lead caregiver stress to become chronic sadness and even serious depression. There are interventions such as medication, individual counseling and support groups. Guilt can come into play around feelings of “wishing it was over already” or feeling that “I’m not doing enough”.

This is a critical time for the spousal caregiver to get help and support. Self-Care is vital. The primary family caregiver may not have a good understanding of these normal feelings and reactions. It is at this point when the anticipatory grief becomes constant with accompany sadness, continual crying that outside help is most needed. This includes some break in caregiving. Perhaps another family member, friend or a hired in-home aide is needed in the short term even to have the time to get help for themselves. At some point later on, Hospice/Palliative Care ought to be considered.

Tips to Cope with Loss & Grief

• Express your feelings of loss and grief when you feel them, rather than pushing them to “later”. Then they are truly overwhelming.
• Feel the feelings, you can’t fake your way out it with a quick fix.
• Accept your limitations – you cannot do it all, all of the time. You are human and going through a very difficult life reality.
• Continue to care for yourself – physically, emotionally, intellectually and socially.
• You show caring, empathy and concern for others, shower it on yourself.
• Acknowledge and understand these difficult feelings – try to meditate or focus on them for a short time every day. Console and comfort yourself.
• Break down the sources of your stress into more manageable, smaller pieces.
• Speak with the Medical Team and stay informed.
• Strike some degree of balance in your life and make your needs known.
• Get help for yourself and your loved one.
• Start giving yourself permission to live your own life apart from your loved one.

Caregiving and Grief do go together along the path of an extended degenerative disease process. It is hard. Uncomfortable feelings are normal and natural, and unpleasant. Learn to how to pivot through feelings of sadness, loss grief and eventual acceptance.