The road to the care home

 I had so many lovely messages after yesterday's post that I'm determined to get back to where I was with daily posts.  Who knows whether I'll manage it or not but for the moment my brain is working and I still have stuff to share so let's just go with that for now.

Two of the comments that came up again and again from those emails were to the effect 'we're nearly at that point so this is useful' and 'we're not there yet but I want to be prepared' so I thought I might share with you how we got to this point, how quickly we arrived and what prompted that momentous decision.

I say momentous because it really is.  It's an admission that you can't cope any longer, that you're not the best person for the job and that right now you're life is about to change beyond recognition.

So the first question I think is 'how do you know this is the right time?'.  In my naivety I'd drawn red lines; 'if this happens I'll know', 'if that begins I'll know' but in reality even two weeks before I really didn't know.  I sobbed down the phone to Jake who told me that he would support any decision I took and that I didn't need to ask for his permission.  He also told me that he knew I would 'know' when the time came but I still didn't.

Over the past few months Ash had become more and more anxious and if someone was out of sight for more than 5 minutes he thought he was on his own and was frightened.  That was manageable when the friends were here specifically to spend time with him but if it was just the two of us there were things to do and I couldn't do them just because they involved me being out of sight.  Gardening was out of the question as was sawing wood, housework, cooking unless it took no more than a few minutes; showering was difficult unless it was at night when he was in bed and so it went on.  

We could only watch three tv programmes, no radio and no music; he got so that he was uncomfortable if anyone came to the house and he was uneasy if I had video calls with friends so life became claustrophobic but still I thought I could manage.

I had to run his bath at night and wash him when he was in the bath, I had to get him into bed because he couldn't work out how to do it and I had to dress him in the morning because he didn't know what order to put his clothes on or how.  On more than one occasion he put his arm in the trouser leg and I had to extricate him and still I thought I could manage.

I had to go with him to take Max partly so that I knew he'd been on a proper walk but also to make sure Ash didn't get lost.  Three times I thought he'd done just that and I panicked.   All three times he came home but that didn't lessen my anxiety but still I thought I could manage.

And manage I did but eventually the lack of sleep did what nothing else had achieved.  It almost brought me to a standstill.  Being woken six times a night makes functioning the next day very, very difficult indeed and I got to the stage where the only way to get through a day was to focus on one hour at a time and to nap as much as possible.  That was no way to live for either of us.

Then there came the week where I broke down and sobbed on the shoulder of a friend.  Ask any one of my friends about this and they'll tell you that it's not me.  It's not what I do but I was distraught.

The final straw however came when we had one of those nights.  Ash had been up at midnight, 2am, 4am and 6am.  Each time I had to get up because he couldn't find his way to the bathroom and each time I stood swaying with tiredness waiting to take him back to bed so that he didn't get lost on the return journey.  So one of those nights.  I got up for the day at 6, made him a cup of tea and took it upstairs.  I set it down at the side of the bed and he knocked it over.  I picked it up and put it back in place and he knocked it over again.  At that point I stood and screamed, over and over again.  I couldn't stop and that was when I realised that this couldn't go on.  Ash was permanently worried, he was frightened of making a mistake and it was all just awful.

Cut to the care home where he's surrounded by people happy to look after him, by carers who are constantly smiling in his presence and who are never tired or grumpy.  He's relaxed, he's happy, he eats everything they put in front of him and he even sleeps through the night.  Best of all we're happy to see each other when I go to visit.

So Jake was right, I did know and so will you but it will be different for all of us.  A care home might not be the answer in your case, and there are other routes to go down, but you will know deep down when the time is right, when you know someone else can care for your loved one better than you can.  That's the point when you need to put your shoulders back, your chin up and know it's not about you any more.  Good luck and get in touch if you need someone to talk to.

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Carol S. said…
Thanks so much for this Jane. 😘
Anonymous said…
When I was caring for my mother over 30 years ago the time came, earlier than I thought it would, because my 4 year old son broke his arm and I realised I couldn't care effectively for both of them. Just before this, if anyone had said a kind word to me i would burst into tears. Recently, as my husband's carer, I have reached screaming point several times as things have steadily worsened over the last 4 years. Everything you have said about how Ash is now resonates with me. When I reach sobbing point I know it will be time. I am dreading it.
Jane said…
For me the thing to do was to have a plan in place and because of that I really was ready when the time came. Finding that care home and managing the smooth transition is, I think, the best thing I've ever done for Ash and he's happier now than he's been for years. You can't change what's happening, you can only change the way you look at it.