If only...

All about caring
1

If only mum could feel at peace, could relax, and could remember things that made her smile instead of cry, if only she would stop worrying, didn’t feel frustrated by physical limitations, would just enjoy the light and the sun and the air and would sleep without waking in a panic.

If only she didn’t get paranoid and think I don’t have her happiness, safety and best interests in my heart. If only she didn’t scream my name in anguish every time I fail to answer her call bell within a minute. If only she didn’t press the call bell to complain about the time going slowly, to tell me about her hallucinations and all kinds of things that don’t make any sense, to order me to do things that aren’t possible.

This is so hard.

2

Oh Jean. (((hugs)))

Have you spoken to her GP?

Melly1

3

Hi Melly, yes - mum is in intermediate care now after hospitalisation for a chest infection. I have had some difficulty getting over just how bad mum is, she also has what the dr at the hospital called a “spike” in delirium quite often but unpredictably, where she is impossible to care for. The dr prescribed a medication for those times, but in between there is all the spectrum of low mood and other problems. She was prescribed an antidepressant but it seems to make her more restless and sleepless - just the opposite of what we need.

I’m speaking to the GP again on 25th May, couldn’t get anything soon unfortunately but we desperately need to manage this or it will be impossible for me to care for mum long term.

4

Well I really hope I’m not speaking too soon but I need to update this. Mum came home last Thursday and although it’s not even a week yet she is calm, able to sleep and is very understanding of my need to rest and take breaks away from her so that I don’t burn out.

She hasn’t pressed the call bell once yet. We’ve got a great night time routine - mum’s gone from calling anything from every 20 minutes to an hour all night (for 7 weeks, I nearly had a breakdown), to waiting for me to come at around 3 or 4am to change her pull ups when I get up for the loo myself. She isn’t incontinent in the usual sense, but has this frequency issue. She agreed to try using the pull ups before she became ill, but it went out of the window as she was very delirious.

She also wants to sit in her recliner and is doing so most of the day. Before, she would only sit there for a few minutes looking miserable, refuse to engage with anything and end up going back to lie down. Now she’s not only sitting in her recliner, she’s enjoying the odd quiz show and very absorbed in the 63 piece jigsaws I got her.

She’s ok with me taking a 2 hour break upstairs, while I have a shower and relax. Before she would cry and shout if I went out of her sight for more than a few minutes. She’s happy and easy to talk to.

What caused this miracle? The only difference in her medication is paracetamol, one every four hours. Edit: This came in her blister pack medications from the ward.

In the intermediate care ward, the dr spoke to me a week or so before mum came home and I explained about the restlessness and night time issues. I think the ward worked on that with mum, and she has become very amenable to using pull ups instead of getting (very) upset and demanding the commode all the time.

It’s so different, it’s a pleasure to care for her now. I know the hospital saw the extreme delirium twice within 2 weeks, and the second time there was no detectable infection. Could it be the paracetamol, or maybe I really am speaking too soon? Time will tell!

At least now I can fully empathise with carers going through the most challenging of times.

Edited to add… I also massage mum’s legs with lavender essential oil at bedtime, and she says that does stop the restless leg problems.

5

Lovely to have such a positive post, well done. Fingers crossed that it lasts.

6

Thanks bowlingbun! Yes, I really hope so.

7

Oh Jean, that’s great. You must be so relieved.

Melly1

8

Thanks Melly, yes definitely!