Right now, Friday night, I would have been on a plane headed for Heathrow London.
I would either be posing with champagne because I had sucked in my stomach hard enough to get a free upgrade. Or sitting in economy between two people, one snoring and the other coughing.
Either way, its destination MUM and I had been looking forward to this (you too) since March.
On Monday came the email from Davids family requesting me not to go. Not that I was going for long, however, it seemed far too much to expect. The plans I had arranged, the number of people and my 'handy tips' did not feel a strong enough network of support for them. I'm the only one who can calm him, perhaps they do not know the times that only exhaustion has done that.
Considering that the email arrived on Monday, following the anniversary of non celebration, I was receiving bad news upon a battered soul. (Thus proving I am a fish.)
I always feel it over the top to say devastated, you know what though, I was.
I cried so much on the phone cancelling that flight. And you Mum, how gracious you were, understanding, honest, sad along with me and trying to hold back tears. We had our little treats planned, as well as your hospital visits, and to imagine you going alone and by bus was ripping at me. (Since then Brenda and Lorna have stepped in to help with rides, thank you both.)
Anger, disappointment, bewilderment, victim, lonely, yes I visited all of those departments. My natural unfortunate talent for depression certainly went in for suffocation. On Thursday night I went to bed holding onto my favorite photo of you and Dad. I truly wanted Dad to collect me and I wondered if ghosts could travel abroad?
At 4:30pm today my time, you phoned and I was in the fourth hour of David being full on Alzheimer's David. When like that he looks like Bruce Willis rehearsing for a movie role. Pacing up and down, mumbling, sometimes loudly. Angry, anxious, demanding attention, crying that I am going to kill him. Jumbled words upon jumbled words.
When you phoned I asked you just to say hello to him because distractions can sometimes change his mood. It did for a second when you said it was Jayne's Mum. He connects that to a good thing, so thank you for being a good thing.
Here's my point Mum, I'm in denial about his sickness. And, though reluctant to admit; it was right that I did not leave here. His reactions compete with one another, the mood swings beat mine as a teenager and you know that's saying something. One moment he is shouting at me and the next he whispers "you're beautiful." Some days he will sit next to me and sleep for at least three hours while his arms conduct a private orchestra. Others like today, we are up at 3am (well I was crying and needed to phone you.) It is now 11:30pm and David has only just gone to bed, smiling for the first time today, I like to add.
(On edit, it is now 12:20 and he is back up again trying on shirts.) (On preview, it is now 12:58 and he is very concerned about shoes, children and tomorrow. Nope, I have no idea.)
People have said that I am a good care giver. I read everything, try to follow tips, not react, try different foods, assist in washing and dressing without it appearing patronizing. I recognize when he is frustrated and struggling, I accept the times he kisses the window thinking its me. Hey, its still a kiss. I'm OK when he doesn't remember who I am. Earlier he was desperately trying to ask for someone to talk to, and I said "Jayne, your wife?"
"Oh God No!" he replied.
Today was the first time I could not distract him and calm him. Today I wanted to run and I didn't know in which direction. Today I was pleased I had booked another Doctor appointment, another MRI, another meeting for additional help, all of which he will be so angry about. Today I accept that we are going into another stage. OK, OK - that we are already at another stage.
Oh Mum, I'm so sorry that I didn't do this all in March when I booked the flight. As the primary care giver, you just do so much without thinking. You forget it may not be normal for others to find scrubbing pads in the freezer, or the trash bags brought back into the house and of course all the stuff you do not like to mention. That's the point, I just don't want to think about it, let alone talk about it. You just do it. I just do it. You get so tired coping and reacting to it that you can leave the medical side out of it. Does that make sense?
If I work bravely with the next steps, perhaps a visit to you will be sooner than we imagine. We will sit up in our dressing gowns, watching the bad TV shows, eating chocolate biscuits, until I say "Oh Mum I've eaten all of those." And look at you to find you are asleep. I love those times, because I know you are content. Able to doze at last with someone else in your home.
Thank you for teaching me that difficult times are possible to face with grace. When Dad died of cancer and we all knew the next breathe was not - you laid your head on his chest and cried goodbye.
I think I understand a commitment like that Mum. I think I do.
I will let your understanding guide me through this, rather than the depression I fear. I'm scared, extremely tired, longing for a quiet day just to read - and I know you are with me, despite the miles. You have given me a sense of acknowledgement and recognition of what really is going on. Did you know that? I hope this letter provides you the same. I love you.
Next time for real Mum - Jayne xx
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