End of life care plan - cbd

[17052011]

Mums nursing home have asked me to come in on a Tuesday to speak with the consultant and Mum. I have LPA as Mum can’t see speak or write or see properly anymore. I am very anxious and worried as I am afraid . I wasn’t expecting to this now. I know Mum has deteriorated, she’s losing weight, now in supplements can’t eat solids anymore without choking and is on a soft diet. I’m i in denial and need to accept that Mum doesn’t have much longer and perhaps in the last stages of this horrible illness? The symptoms started in 2009 so she has been suffering a long time. Any help and advice greatly appreciated as always x

[JA10]

They may just want to get some idea of what her, and your, preferences are before she deteriorates. If you can decide now together, when the time comes it will be all sorted, and they will know what your wishes are without having to trouble you.

It is best to plan ahead as much as possible, not easy with this horrible illness, but worth trying. Julie

[Kevin_1]

Hi

Sorry you are having to face this now. I'm with Julie on this.

Would it help to think of her iminent passing as a release for her?

Wishing you the best

Kevin

[kenh1]

We were put in a similar situation in 2016. I was advised by a psychiatrist friend to ask for a 'best interest' meeting. This involves hospice, consultants and hospital chaplain etc. It takes time to organise though and in our situation my wife had an NG tube fitted,her condition improved and we are still here today.

[raincitygirl]

I can't improve on these excellent replies

Just go into it thinking "what is mum experiencing and what would she want, as best I know her?" then trust your love and judgment to do right for her.

Hard times! Hugs to you for strength XXX

Anne G (cbd spouse)

[17052011]

Met with the Dr on Tuesday and they have advised Mum is to frail to have the tube fitted. Therefore, will remain on a very soft diet, no more solids. I just assumed she would have the peg fitted, but now this isn’t an option I’m wondering how long she will have before she can’t swallow at all? What are your experiences with this? Also, they have said they will not resuscitate if her heart stops. It was a very upsetting and shocking meeting. Feels very surreal that I’m even writing this.

[doglington in reply to 17052011]

Thats how it was for my husband.

He gradually ate less and then decided he was ready to go and stopped eating. He died peacefully. No pain. No struggle.

It was really hard watching him but he had had enough. I know I would have felt the same. There is a time when it is right to let go.

All my love to you both, Jean xx

[17052011 in reply to doglington]

Hiya thanks fir the reply. Can I ask how long it was before he passed when he was put in the puréed diet? Xx

[doglington in reply to 17052011]

He was sent home from Hospital with palliative care and died 11 weeks later. Others have lasted quite a lot longer though. It depends on how much they choke and how much nutrition they are able to take. Also their attitude. Some fight on against the odds. Chris fought courageously but had a point at which it wasn't worth it and he decided to stop eating.

Its a wide variation.

A mixed blessing for the carers too. It takes courage to let them go - and they need to know its ok.

love from Jean xx

[raincitygirl]

Dear Seventeen; No matter how much reading and researching and chatting with others about this disease, it still seems shocking when what we read about actually does happen to OUR loved one! ...At least that's been my experience so far.

I hope your Mum is comfortable and able to enjoy some lovely tasting soft treats. Definitely spoil her! ice cream smoothies, frappuccino's - whatever she can enjoy. Treats and lovely music and a bit of sunshine and lots of hugs and warm recollections from you.... I sincerely hope the time passes well for you both - though I know it will be hard.

Hugs for courage XXX

Anne G.

[17052011 in reply to raincitygirl]

Thank you for your comments xx