Palliative Care..

Hi all my lovely Mum with CBD (10th year) has been 4 weeks in hospital. She was initially admitted with abdominal blockage, then urine infection, then aspiration pneumonia. During the throes of awful pneumonia she lost her already weak ability to swallow. We were told it wouldn't be humane to put a PEG line in as she is too advanced in CBD. Incredibly she has pulled through. Very weak swallow function has returned. We have been on the most unbearable roller-coaster. This week we have a best interests meeting with the medical team before hopefully a 'window' of getting Mum home and hospital discharge. We have already been told Mum is now going on palliative care so if and when she gets the next infection she will only be given sedation and pain relief. We have got hospice on board. I am quite worried about how we will manage Mum at home, we do have double handed carers 4x a day but only my Dad 85 years old on overnight. Dad is insisting that he doesn't want Mum going into a nursing home. I am a single Mum with 2 teenage boys and work so can't help out covering overnight. With Xmas coming I am thinking we try this for a few weeks. We are also going for CHC for the 4th time. Does anyone have any thoughts or experiences on our situation? Thanks in advance if can offer your insights xx

[kenh1]

My wife managed to stay at home right to the end with the same care plan as your mum. I am not as old as your dad I'm 77 but I had very few disturbed nights. We had CHC funding throughout. I think we were very fortunate as our health authority is very sympathetic and understanding. We had the same annual assessor throughout. I gave her as much information on CBD as I could obtain, also we received help from the neurologist who diagnosed my wife as having CBD. We received help from the hospice who are also linked to the Palliative care team at the hospital. I would recommend you obtain copies of the professional guide to CBD from the PSPA and give it to the assessor and also get your neurologist on board. My wife was diagnosed with CBD in 2013 and died in 2019 but I would say she had symptoms for a number of years prior to diagnosis.

Also take care of your dad. Last Monday a neighbour of ours who has cared for her disabled husband for years and was using the same care company as us was found dead when the care workers arrived for their morning call. She is the second carer in our street who has died caring for their loved one. Both their loved ones are still alive. Carers take care of yourselves.

When your mum is discharged from hospital they should include eligibility for CHC in their discharge assessment , that is how we got it. The discharge nurse said my wife was ticking a number of boxes for CHC. They kept her in another week and she came out CHC funded.

[doglington]

Are you in the UK ?

I was in the same position with my husband and I kept him at home with palliative care until he died 2 months later. The care and support was great. I cared on my own. There was 24 hour telephone support . He had no pain and a peaceful passing.

He slept well at night so I didn't need overnight care . Remember that they prefer you to care at home so ask for what you need. I never applied for CHC as it all changed quickly. You are fast tracked.

Keep us in the picture. Good luck and love from Jean x xx

[Kevin_1]

Martina

I am so sorry to hear your news.

It must be painfully intense.

All I can say is go to the best interest meeting with an open mind and heart and focus on what you think your Mum would want.

There is a time when suferring overwhelms us and then it is time to let go.

Some folk are determined never to let go.

You need to fathom your Mum's view on this. There is no 'right way'.

You are in a very hard situation. Your love for your Mum wants to cling to her. She too wants to cling to you.

I have no answers.

Make your decision from your deep true heart knowing.

Warmly and sharing sorow.

Kevin

[Dadshelper]

I don't know much about CHC but palliative and hospice will do a great job of keeping your mom comfortable.

Ron

[honjen43]

You have done well to get your mum home. Am certain that is where she really wants to be!

I would have thought that Hospice had an option of a carer overnight if it is needed.

Your lovely dad needs that support too so that he is not on his own when his wife passes. It may take a little time and he needs to remain calm and to sleep too.

I hope things work out and that all is peaceful.

Hugs

Jen xxx

[Willow_rob]

Get your District nursing team to contact Marie Curie and organise a night sit. They supported Mary in her final days and me on occasions throughout the two years of her illness. A wonderful organisation who may prioritise your loved one as "changing urgent"

[Hiking13]

I am so sorry to hear this. Can you ask for the CHC to be fast tracked as I am sure this is an option if you have reached the palliative care stage but you will probably have to be quite insistent and get your consultant on board but surely you should be entitled now. Thinking of you

Love Sarahxxx

[AnneandChris]

Hello there

My thoughts are with you at this difficult time.

Please go to that meeting and ask for fast track CHC. If you can get your Community Nursing team on board they may be able to attend to support you too.

Good luck, keep on keeping on

Anne x

[Hidden]

Hi all I have an update..

My lovely Mum still in hospital.

We had a discharge planning meeting last week. It was a unanimous decision that Mum has to go to a nursing home as she has to be turned in bed every 2 to 4 hours. Also her bowel meds are very difficult to manage and she is now on enemas every other day..

Her Consultant saw her today and has written a report to say her condition is rapidly deteriorating. This will give the green light for Fast Track CHC..

This will hopefully mean we can move Mum from hospital to a decent nursing home..

We won't be able to have Mum home for Xmas but do have hope for her moving from hospital into a nursing home.

Wishing you all a very Happy Xmas xx