Odd question

Does anyone have any stories or experience to share.

My mother has condition Neurological Gait Ataxia & Apraxia which is causing dementia like symptoms that has worsened since a fall nearly 4 months ago.

Before the accident she would vaguely recognize myself - my wife and family, however since spending nearly 4 months in hospital 5 of which have been spent 80 miles away from me, she does not recognize any of us nor does she appear to be aware of us nor appear to see.

I have spent as much time as I physically can visiting her. However, I have now feel like I am starting grieve even though physically she is still alive, I feel mentally tired as does my wife, when I / we see her she is sleeping and unresponsive though obviously alive, however my father is reporting back that she is awake and attempting communication and everything is fine. Her eating and drinking is sporadic and other times she is on IV fluid drips and an assortment of drugs.

Prior to being transferred back down to Essex she was hospitalized locally to us and my father stayed with us maintaining a daily bed side vigil, that he is still keeping up to this day… Which is also not helping my mental tiredness as we are getting daily updates. Until a week or so I could cope with but now feel that mentally I can’t

I feel like I am doing my mother and father an injustice however I feel like I must be honest with myself and the family.

People have shared experiences with me saying in situations like this you grieve twice. I’d be interested to hear anyone’s thoughts?

1 Like

Hello @robomonty, thank you for bravely starting this thread and sharing your feelings. I’m sorry to hear of your mother’s illness. Many of our members have lost parents at the end of illness so will understand some of what you’re going through.

You mention that you’re starting to grieve even though she is still alive. This sounds like anticipatory grief, which can be exhausting and devastating. You can read a bit more about it here: https://www.cruse.org.uk/understanding-grief/effects-of-grief/anticipatory-grief/

I hope you find the community to be a support - keep reaching out.

Take care

I’m so sorry to hear the awful time you are all going through. You are absolutely right in saying you are pre grieving. I was too for my mum who we sadly lost in August 2020. From her terminal diagnosis in November 2019, right through until August 2020. The pre grief bought me to my knees. They lived 60 miles away, I would drive back and forth on a sea of tears. It was so intense. I can only say that somehow (god knows how) but you will get thru it, never ever over it, but through it. Sending so much strength to you and your family for the weeks and months ahead. Take care. Tell her over and over how much you love her, she will still hear you right until the end x