Dementia – Grief – Christmas
Each year I post on social media quite a bit to support those who are grieving through Christmas time. I also look for the posts that support my own grieving self through this time. I rarely find any that speak to my grief in the way I seem to need.
You see, i am grieving the loss of my Loved One piece by piece, month by month, year by year. It’s an unusual kind of grief. She hasn’t died yet but so much of her is gone. I have slowly been losing her for years now and man it is like 10,000 knife cuts to my heart ~ year after year.
She has Dementia of the Alzheimers type and it is advanced now. It is a cruel disease, stripping the person slowly of every bit of dignity they have. And it is an excruciatingly painful & stressful journey for those who love the one living with Alzheimers. Their brains become like swiss cheese ~ as though they have been attacked with a shotgun pattern to the brain. It becomes the Long, Slow goodbye between you and them.
I have kept a photo journal of my life (1 photo per day) for over a decade. I can look back at how she and “we” were this time last year…… and “we” are so different another year down the track together. This is phrased as “ambiguous loss: living loss: chronic sorrow”….. I have never heard of it referred to as “disenfranchised loss” but I am claiming that description for it as well.
I am her daughter. She is my Mother ~ but so much of her is not anymore.
When someone dies, there is a line in the sand – a clear full stop…….
And everyone understands that you are grieving; they expect you to be a little off for the first year (although it often goes on much longer than that). But when it is a living loss, there isn’t the societal acknowledgement for the griever. The “permission” to grieve isn’t as graciously offered by others (unless they are a fellow pilgrim walking the road of losing a loved one through dementia). I have learnt just how important it is to acknowledge and validate my own grieving journey. Even when those around me don’t really understand it. I choose to see, hear, know & hold my own heart with great compassion; especially at Christmas time and other significant dates throughout the year.
Perhaps I will write more about the journey of loving someone living with dementia. For today, if my grief resonates with your grief, perhaps the following might be of just the smallest support during the Christmas season:
GENTLY acknowledge your new reality for this month – these are “shifting sands” kind of times. Each day can be different; each hour even. Go gently. Acceptance is your anchor.
ASSESS your expectations (of your Loved One, yourself & others) and ADJUST where necessary – even if that is by the hour.
FEEL & lean into your sense of grief – BUT DO IT IN DOSES. Be in touch with your body signals and your emotions. Notice and name it all. Cry, journal, feel the feels and allow it all to move through you (not be trapped in you)
PACE yourself and connect with comforting and reassuring activities and rituals.
SAVOUR every “good” moment possible with her/him
BE in the moment with them as that is all they have when their memory is so badly damaged by the disease – the MOMENT is all you have together….. and each moment is YOUR memories in the making for the future when they are completely gone from this world
CAPTURE the moments on camera and video as much as possible
ACTION old rituals as much as possible with your Loved one
CREATE new rituals where needed – bend, flex, adapt
ARMOUR up if you need to – protect your heart. Don’t take any aggressive or strange behaviours personally; if your Loved One could “see” themselves, they would be horrified at what they said/did/didn’t do.
DITCH the guilt – if you just can’t do things the way you would normally do them, accept your capacity and your limits. You are not letting him/her down. You are human. Caring for, loving & grieving simultaneously someone with dementia is just plain HARD and often distressing and traumatic.
SEEK some quietness and solitude (but not too much) during the Christmas season. Connect with your body, soul and your spirit. Ground yourself as you lean into the loss. Prayer, meditation, mindfulness, nature immersions, music, beauty, creativity, wonder – these are all going to support you. Make time for these.
EMBRACE every moment you can. Look for the precious moments of connection – sometimes they are just the briefest of seconds but they are often still there. Love, love, love her/him with all your heart, strength and capacity.
ALLOW yourself to laugh….. sometimes the strange and devastatingly sad behaviours of your Loved One can also be kind of funny. It’s okay to laugh and draw on humour to soften the agonising grief.
GRATITUDE give thanks for the good – look back over past memories, photos too; remember and give thanks for all the memories as well as what is still left in the here and now. You are still “making memories” ~ make them the best ones you possibly can.
May you deeply know and experience the Advent hallmarks of Love, Peace, Hope & Joy with your Loved One this season & beyond.