28th Sep2010

Hospice respite

by Dutchcloggie

A self-indulging start of this post. Because I want to.
Last night I had the freight of my life. I thought JD was about to pass away. I had a panic attack because I could not even begin to oversee the consequences if she were to pass away whilst we are in between houses and house moves. Selfish, I know. But you see, the thing is, I can deal with the caring for JD. But organising everything else in our lives is proving incredibly hard. I am constantly feeling overwhelmed by the things I need to do and organise.

Anyway, I rang the nurse in the morning and later on, the MacMillan nurse came to have a chat with us. She explained the results of the last scan in more details. In 2 months, the tumour has gone from being stable to being in her right frontal lobe, left frontal lobe, brain stem, midbrain and cerebellum.

The oncologist at the hospital still wants to try chemo treatment and an insanely high dose of steroids (32mg per DAY!). The MacMillan nurse said she was uncomfortable prescribing such a ludicrously high dose and we agreed on a lower dose. Steroids reduce oedema in the brain. If there IS any, reducing this swelling of healthy brain tissue might result in JD being more alert, at least for a while.

I explained that we are moving house and that the idea of having to move house around JD is incredibly stressful. The nurse then suggested maybe JD could go into the local hospice for a few days. They don’t normally do respite care but we could try and swing it so that they would take her in to make an assessment of her care needs and monitor her for a few days whilst she is taking the steroids again. And totally by accident, these days would be exactly the days we move house.

Good.

I am mainly happy about this. But I am also aware that JD’s stay at the hospice is the first step towards the end. She is eventually going to die there (unless she dies at home). Even if this time she is coming home again after a few days. I tried to explain to JD what was going to happen over the next few days and she seems to understand it. But she is not able to show much emotion so I can not tell how upset she is.

All I hope for now is that we can have a few more nice weeks together in the new flat.

By the way: LOADS of people want to come & visit. There may simply not be enough time for everyone to visit before JD passes away. 2 visitors per day is max as she will sleep more and more. I am sorry if it is going to upset people but I am going to have to be quite ruthless. Please do not be offended by this.

5 Responses to “Hospice respite”

  • emmasplanet

    >your doing a brill job you really are please look after urself too all my love to her as always. glad she found you and has that happiness in her short life sadly not forever BETTER TO HAVE LOVED N LOST THAN TO NEVER HAVE LOVED AT ALL your amazing

  • michelle_ramsey

    >you are doing a great job,please look after yourself as well, this is the most stressfull thing you will ever do, please keep talking we are listening and are there for youAll our love michelle

  • Fiona

    >Praying for strength for you as you give so much of your life to J. If you need any help in anyway please just ask. So pleased I saw you two at the airport I realise now what a privilege that was. love and hugs to you both.xx

  • >Take care, Marieke. Of yourself, and of Jane.Respect and admiration always

  • >To cry, you don't need to shed tears …

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