Hi there Wag, and lovely to hear from you.
So sorry about all that is happening to you right now but please believe me when I say that these things will pass.
Your wife, poor thing, has been shocked and overwhelmed. Her reaction was to hit out at the person closest to her - you. She is ashamed and sorry - of course she is - but there is nothing she can do when her words fly out because unfortunately she cannot suck them back in, can she? She must be all mixed up and frustrated … just as you are …
As for the fact that you go staring … I’m sorry to say that I’ve found this to be classic in my mother’s case. Not only does she stare off into the distance, but she does this when I talk to her, and I’m guilty of flying off too. This hurts her, I know, because she is not so quick to respond back like she might have done without the PD, and so if I don’t apologise straight away as I’ve said something to hurt her then we could end up having a very bad relationship indeed. Once PD has been diagnosed ‘stress’ is an absolute hell for you.
My mother’s PD has lasted for over 30 years in total. Now I’m her sole carer after my Dad died in 2017. During these 18 months she has deteriorated a great deal, gone slower, shuts and opens her eyes for no reason, hallucinations at night, unable to sleep at night, nightmares that seem so real that she wakes me up just to tell me that she can hear people talking about the Bank of England running out of money! I sit with her until her agonies lessen. I let her talk herself out of it.
It’s never easy … for you the sufferer who is still inside there somewhere but can’t quite make things happen quickly, suddenly or sometimes not at all … and for the carer and loved one who misses the old ‘you’ …
Human behaviour is very peculiar. The one thing that we all agree on, if we are half decent, is that we love, show patience, and a great deal of care when we do things properly, but we can also deeply hurt and yes, even become angered, when PD or some other disease hurts and hits our lives. We are also creatures of habit to some extent … change does not always suit … but change is necessary and with it comes awakening - in you with PD and your wife too as she grows in her own life’s experiences.
Also, I can honestly say that having lost my late husband very suddenly and coming back to live with my parents and care for them in their own home was not a happy choice for me. I knew the difficulties of caring for older relatives … but I got stuck in and did my best. And I found God. Without God I don’t think that I could have coped or had the right attitude to continue to be with my mother whose changing PD has been a roller-coaster of a ride. I feel that I have grown spiritually so much that I now hardly know myself … because I care for my mother, and because the relationship that we share is built on firm ground, because I will be very sorry to see her go ‘home’ one day and will miss her terribly, but also I will have got to know her like I might never have done had we not had this experience together.
Please be patient with your wife. Please talk to each other. Communication will be your everything in the end as I’ve found out with my family. I like to watch/learn from the videos and educate myself about PD because it can be a shocking experience, and I try to keep my family educated too because it helps them to talk and communicate with my mother more easily. But people only do what they want to do and if they don’t have to, or they don’t want to, then that’s another thing altogether.
I’m thinking of you both. I’m praying for you too. This is not easy, believe me, but it will pass and get easier for you both. Love, the right attitude, communication … all very important … but so also is respect.
Love to you both.