An up and down sort of day

Shopping this morning and the trip had potential for disaster because I forgot the list!  Once upon a time Ash was in charge of grocery shopping and did it all, from drawing up the list to going to the supermarket, coming home, putting it all away and then using what he'd bought to cook our meals.  Now his role involves pushing the trolley around the shop and crossing items off the list as I add them to the growing pile so if I forget the list 50% of his part in the trip is gone which meant that, when I realised what I'd done halfway to town, I thought I was in trouble.  In reality the lack of a list made things easier for him but it meant I had to wrack my brain to remember what was on it and make sure we didn't need a return journey in a couple of days time.  Now we're home I'm quite proud of the fact that I only forgot two things, both of which I can easily get tomorrow when I'm out so the day is going much better than expected.  The whole thing once again though brought home to me how much everything has changed and I was feeling quite flat.  I can't remember the last time we had fun or the last time he spotted an opportunity for an adventure or the last time we were both looking forward to something.  So much is different and so much has been lost.  One of the things which really angers me is when people say 'My mum/dad had dementia so I know how you're feeling'.  If you are dealing with a parent with dementia I can tell you right now that you have no idea how we feel.  We grow up assuming that at some point we will be looking after our parents but watching your best friend/ lover/ soulmate morph into someone you don't recognise and who can no longer share your life is one of the most soul destroying experiences you can ever imagine.  Ash still looks the same and sounds the same but he's such a pale version of himself that it feels odd being with him.  We still have on the answerphone the message he recorded at least 15 years ago and sometimes, when I phone home and he doesn't answer, that message kicks in.  Every time it does I listen to him talk and he sounds so vibrant, so full of life that I feel as though I've been kicked in the stomach and hang up as quickly as I can.  So, if you meet someone in my situation and you do have some experience  let them know because that will be helpful but don't ever say 'I know how you feel because ..........'.  And if you have no experience of dementia at all but are struggling in other ways then the very last thing you should even think is 'I know how you feel because ........'

Now this is interesting.  I wrote that long paragraph above just before I went out onto the field for a spot of socially distanced chat with a couple of friends.  Before I got out there I felt awful; despondent, down, even on the verge of depressed (and I don't use that term loosely) but an hour and a half with friends who make me smile has made all the difference and I'm now feeling ready to face the world again.

So my two recommendations of the day are: don't say 'I know how you feel because.....' and do spend time with friends who will support you through anything and make you smile again.

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Comments

Tehachap said…
By coincidence, my husband and I went grocery shopping just this evening. It was everything you said and more. We've been married for 56 years and as you say, it's no longer a partnership--you and I do the work and they observe. So bizarre... and sad.
Dr2n said…
Today I found a cat we had been feeding for many years, and the father of 4 of our cats, dead in our shed. He had been missing for a few days after looking like death warmed over for the last few months. I told my husband about finding him and went to get the stuff to take care of him. After I was done and came into the house, I was kinda surprised that he didn't say anything, offer to help, nothing. But that's the "new normal" around here. I live the life. He watches.
Karen said…
It is really hard for me not to get irritated. Not at him as much as at life. Then I stop and think about how much we have to be thankful for but still...,
Jane said…
I like those comments about how we do the work and they watch because that's it exactly Yesterday I mowed the lawn and doing one section involves me lifting the mower up and down 5 steps. I struggled down the steps when I'd finished, manhandling a mower with a full grass bin and then saw Ash watching me through the window. It's moments like that when I realise how much of the real him has disappeared. And as for being irritated I try so hard not to be because I know he can't help it but sometimes I hate him for distancing himself from me, for letting me struggle through life and for not caring. Even if none of that's true it's always how it appears.
Dr2n said…
More of the "dead cat story." Yesterday I spent several hours outside digging a grave for the "old man." It was about 94 degrees (F) and I found a good place at the back of the yard near the fence. I took my phone and a speaker out. I cut back some brush, sat down, listened to one of my favorite playlists--with happy and silly and sad songs and dug a hole about a foot deep and about 3 feet by 3 feet. I cried at the sad songs. I laughed at the silly one. I sang and put all my sadness and loneliness into the hole. Then I put Felix in, covered him up, put bricks on the top to keep anything from getting him. With that I considered my "mourning"--both for Felix and for my hubby as he was and our relationship as it was--over for now. I felt great!! Cleansed, happy, TIRED!! And, as expected, when I came back in the house, not a word!! I think I'm about ready to stop expecting. And I feel good.
(Thanks for letting me vent a little. If I'm taking too much space, let me know!)
Jane said…
Definitely not taking up too much space. The more everyone comments on here the more we're helping others. You're right about the mourning for husbands and relationships and think sometimes we can only do it through mourning other losses too. Am very sure your comment will be just what others need to read. Keep them coming.