Grief is a wave that can come crashing in at any time. Ordinarily we think of grief as a process experienced when someone dies. With Dementia, the grieving process starts at the beginning and continues whilst your loved one is alive and deteriorating, as well as following their death.
The Irish Hospice Foundation say this: “Loss and grief is one of the most significant and under recognised issues faced by people with dementia and their families. People with dementia experience multiple losses in different areas of their lives, and these losses build in number and magnitude as the disease progresses. Grief occurs in different ways at all stages in the dementia journey for the person, for the family and for healthcare staff supporting them.”
I’ll share a little of my experience, although every story will be different. Every process will be on a different timeline and have a unique set of manifestations. Every relationship is different which will mean the grieving process will not be the same.
My parents were both extremely intelligent human beings who were still working when Dementia invaded. The theory of using your brain to stop Dementia did not apply to them as they were using their brain a lot in their work as naturopaths. To see my very capable, tenacious, brilliant-minded parents deteriorate until they were hardly recognisable brought waves of sadness. After most visits I would have a good cry on the hour trip home. I believe that is very important to cry when you need to. Preferably not in front of them as they are also grieving their loss of cognitive function and loss of independence. In the earlier stages, my parents were very upset that I had to do so much for them and were aware of how difficult it was for me so I tried to stay strong when with them. I became aware they had so much sadness to deal with about their decline and the knowledge they were coming to the end of their life.
I also experienced what they call ‘Anticipatory Grief’ which is when you grieve anticipated losses in the future. I would wonder how I would cope when one of them died. When I saw other patients in the home in a bed not being able to move and being fed, I dreaded that happening to them.
Looking back, I think some good ways to handle this ‘long grief’ is:
- Cry it out
- Have good family / friends to hug and talk to without them having to fix anything (if that is not available to you, use this blog as a support to write your feelings) or start a journal
- Laugh at the funny things they say and do without feeling guilty about doing that – laughter is the best medicine!
- Be mindful to not enter into any feelings of guilt
- Cherish the moments and see them as bitter / sweet because of the priceless moments together, rather than just plain hard
- Go to your “happy place” as often as you can find the time – for me the beach or a walk in nature
- Have some “photo memory bonding” moments – look through photos with them from the past and enjoy the bonding that creates
There is a lot of information to read, however if you are like me, you will be trying to keep your life, job, etc going as well as the added time of caring for / visiting your loved one – doesn’t leave a lot of spare reading time. If you have time, I have listed some articles on the Links and Articles page of the blog.
A SPECIAL NOTE TO THOSE WHOSE SPOUSE HAS DEMENTIA
This journey for you must be particularly tragic to see the person you love and have spent your life with deteriorate. When I would visit my parents, there was a beautiful couple. She was a stunning woman in her early 50s bed ridden and her faithful husband was there most days. I asked him if she recognised him and his words were priceless – he said “no but I recognise her and she is my beautiful wife whom I love so much”. I felt so inspired by him and also so incredibly sad for him. May you know love without limits in this time and be strengthened for the journey.