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Infection/No Chance of Recovery - Carers UK Forum

Infection/No Chance of Recovery

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My 74 year old caree has been in hospital for around 2.5 months, her 5th admission since Christmas for things including dehydration, a broken bone in her back, swollen leg, chest infections and UTIs. The pace of admissions and the duration of her stays have increased. The previous admission saw her catch Covid on the ward in the spring.

She has been struggling at home for a couple of years, with the last year meaning that she didn't have the strength or mobility to leave her flat. For the last 3 or so hospital discharges, she's had local authority carers put in place upon discharge, a meal delivery service, a pendant alarm and a hot food delivery service.

Her quality of life was very poor, she got depressed and she was hard to talk to due to moodiness and not wanting to make any changes (but her personality was volatile before this). She was helped out of bed by a carer and put in an armchair where she stayed most of the day until the one at night took her to bed - that was her life. She seemed to stop eating, or perhaps couldn't eat and perhaps the carers did help her in that regard - we found many uneaten meals from the hot food service in her flat but then again, she wasn't really interested in food.

She recovered from the infection that led to her recent hospital admission which gave her delirium - the carer found her non-responsive during tuck-in. For very many weeks on the ward, she'd been ready to move into Intermediate Care for 4-6 weeks (she was amenable to this). It was a waiting game for a placement. Her family and friends hoped that she'd enjoy the experience there and want to move into permanent care which the Social Worker had offered her but she'd rejected.

Then, for the 2nd time, Covid hit the ward about a month ago. She didn't test positive this time but we thought that would scupper her chance of moving to a care home. As the quarantine period for the ward ended and the date approached for her move there, she suffered a non-epileptic seizure. No cause could be found from a head scan. She'd suffered from seizures in her 20s, the cause could not be established then either.

After about a week, when she recovered from the post seizure sleepiness, she was the most full of beans and chatty that we can recall in a long time. For a change, our telephone conversations were not her passively answering a few of our questions (and ignoring others) but she was initiating conversations about the weather, Halloween, the Covid restrictions in place in our area. I thought this boded well for her place in the care home to be arranged. She has been very tricky to speak to on the phone but that call was one of her most relaxed and she was at her most curious about the 'outside' world and current events.

That was on Saturday 31st October. Just two days later, I was startled how poor her speech was when I called her. The Nurses confirmed that they were worried about her. All that week, she continued to suffer from Hypo-delirium (the type that makes you sleepy and inactive). I was told she wasn't eating or drinking and was mainly sleeping, with the odd bout of aggression. During the week, there were no markers in her blood test to flag up an infection, cause of delirium unknown, but a marker had just shown up on Friday 6th November for an infection. The Dr said she'd be given fluids and antibiotics that would help if it was a chest infection or UTI but that if it didn't work, treatment would be stopped and she would be placed in palliative care.

On Sunday, 8th November, I was informed that the antibiotics were not helping so all treatment would be withdrawn, her faculties were declining, the delirium continued and that there was no chance of recovery, nature would take its course while she was made comfortable and given pain relief. This was a shock to me as I guess I got used to antibiotics resolving the types of delirium and non-engagement that's been a bit of a pattern.

I visited her yesterday expecting to see a dozing, non-responsive dying person with limited or no faculties. She was very weak and sleepy but seemed to understand everything I said. She struggled to speak but tried on many occasions, it was like she had a very dry throat or was struggling to put sentences together but she wanted to talk. She managed to respond to 'yes/no' questions and said things like 'thanks' and 'how are you'. She waved when I left.

I suppose I am just bitterly disappointed that she was on the cusp of moving into care where she could have had the higher support, company and better food that she needed to thrive better compared to being on her own in the flat. I am not saying that the further illnesses may not have taken place, just that it was bad for her to thumb-twiddle on the ward as a bed blocker for so long when the services to move her on were not there.

I am upset that her last year of life has been mainly spent in hospital with very limited visiting or stuck in her armchair at home.

For the last couple of months on the ward, the restrictions meant no-one could visit her which again was not a good experience for her or her spirits. She has a disability (muscle weakness on one side, wears a caliper) but didn't or couldn't seem to be given any physio or exercise. She said the Nurses wouldn't let her try to walk anywhere. I was worried that this would make her weaker but also wondered if she had naturally lost her mobility as part of ageing. I hoped the care home were going to attend to this and I could get her mobility walker to her as I know that inactivity leads to muscle mass loss.

I have limited experience of supporting a dying person and have to trust the experience and skills of Doctors about her prognosis and that there is nothing they can do. They do not seem to know why she is dying, other than an unknown cause of infection.

Because at the moment, it just feels like they tried her on antibiotics for 3 days and gave up to leave an unknown illness to claim her.

I know this observation also means that I am having trouble adjusting to her going from a chatty person to a dying person in the space of a week.
Dear Joanne,

I have just read your post.

I don't have experience of being in you and your caree's situation, but others on here have experience of carers at end of life. I'm sure they will be along to reply.

It must be very hard to have seen such a sudden deterioration in your caree, especially after the really lucid phone calls you had with her so recently.

Sending you cyber support,

Melly1
Have the doctors not explained fully what is happening to your caree?
Are her organs failing?
She may be just so unwell that the body is just not able to fight anymore.

Has she made a will? are her affairs in order?

What will happen to her possessions and her flat?

I went through this last year with my caree who died in hospital, so i can fully understand and sympathise with you.

This is a very distressing experience.

The hospital should be giving you some support, there should be a Chaplain/chaplaincy service.

You can talk to them who will give support and help through the processes.

And make sure you get some bereavement support, it will take weeks or months to come to terms with

what is happening.
My mum went through this Yo-Yo period for the last year of her life. She was 87 when she died.
During that time she had a series of mini strokes, and another larger one. She would be her usual chatty self one day, like your caree, then on the next visit her usually very clear speech was slurred and she couldn't find the words for her favourite flowers.
One day I thought "if this is the end, please let it come quickly" then she would have bounced back to her usual self on the next visit!!
Fortunately, the home she was in was just down the road, between my house and the supermarket, I could pop in whenever I wanted to. The hardest thing for both of us was when the stroke upset her eyesight, as she always enjoyed reading, and the TV. Then her hearing failed, and I had to raise my voice so that she could hear. Especially difficult for me as I have had a problem raising my voice ever since I had a serious throat infection a few years ago.
I did everything possible to make the home bearable for mum, taking her nice smelling toiletries, and flowers from her garden, until I sold the house, then fresh flowers from the supermarket after that. (Mum came from a family of gardeners and was always happiest in her garden surrounded by her flowers).

I would suggest that you Google "Signs of Dying". I did this several years before mum passed away, wish someone had suggested it when my dad was dying of prostate cancer. You will find articles written by people from the hospice movement, explaining how the body shuts down during old age. Then you can decide whether the hospital could be supporting your caree more.
Be kind to yourself. Normal life seems to stop at times like this.