In crises (unpredictable, hypervigilant, walking on egg-shells times) when you know nearly all the paramedic teams from all the call-outs, … night-times, fridays, weekends can feel like the tunnel of horrors when you try to white-knuckle the support and steel yourself for what could happen.
Identifying support is a challenge, organising and planning to have a stranger come and do overnight watch/support can be disruptive and trigger arguments at the 11th hour. Our situation with Dad he was ‘palliative’ for a few years but in the last months the extra support was a lifeline for me & Mum. It wasn’t easy, nothing was at that stage, but it kept us sane enough to continue & ensure we were all safe.
This is the thread, I wish someone had shared options/resources/ideas that I could quickly research and try, when things were stable & push the button on when we were running without sleep for days on end.
The Question: How have you managed overnight care or care at weekends in the home? Ideas & organisations or tips that have worked for you? Links and recommendations would be great, please!
(especially thinking of recent posts & situations - @Sue24 @friendhip123, Plus selfishly I’m preparing for what is likely to be inevitable for us later )
@Melly1 @susieq - there were old posts and links on similar topics in 2019 but the links kicked up an error. Could you share any links to topics that you think are pertinent?
@bowlingbun or @Charlesh47 There could be another thread specifically on how the current system supports/finances overnight care if there is such a thing?!? Is it in Continuing healthcare?? Benefits??
To kick things off
@thara_2207 & @friendhip123 mentioned https://www.country-cousins.co.uk/
I know of someone who used https://christiescare.com/ for lived in care
The National Association of Hospice at Home - members: Current Members - National Association for Hospice at Home This is the list of members. The one we used is listed. They had trained medical nurses, who were VERY experienced, as well as healthcare assistants. EVERYONE were angels, inserting into our routine and home on our terms and with huge empathy. We called, assessed our needs (palliative and end of life), they couldn’t plan far ahead as the number of carers and individual’s needs changed…I’d get a call in the afternoon to see if I ‘wanted’ overnight watch - 10pm to 6am…It was a struggle with Dad to ‘accept’ someone ‘watching’ him and helping with toileting/accidents…(vascular dementia compounded feelings, arguments etc) BUT even 4-5hrs of sleep was a big help.
Via the hospice I also identified a couple of people who could come for an hour now and again, who used to be on their team but ‘set up on their own’. This gave me 1 hour respite - 10mins walk, 20mins in gym, Morrisons speed-shop and 10mins home.
In London: https://www.pembridgehospice.org/ were amazing support when a couple of elderly relatives needed help. The husband had extremely sharp decline with cancer, no further treatment for it. I was blown away by how they had fully integrated connected support, and a very empathetic consultant visit the couple to reassess his quality of life needs. (not the same up north!)
Finally & Most important - Maggies: https://www.maggies.org/
usually located near a hospital, they are a godsend. Even if your loved one doesn’t have cancer call them to hear the ‘lowdown’ of how things work in the area & what hands-on support you can really expect. Counsellors, nurses, finance-benefits support…
I hope one of you can use these links to help you
Getting care at home organised is HUGE efforts, so try to get someone you trust to call around with you.
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Hi Victoria - could you supply a link to the post that contained the “broken” links please and I’ll have a look.
I’m presuming you’ve done a search using the search function at top right of the page (magnifying glass) but didn’t find anything relevant ?
Hi @susieq
This is the link I clicked on and got a 404 page not found…
yep did the search…i didn’t really want to get into the finances in this thread, as everyone’s situation is different…but of course, I defer to experts on the healthcare system pathways…
I’m hoping coming at the topic from what we need & when will enable more targeted tailored support ideas, instead of us trying to untangle the complexities of what’s on offer - thoughts?
When you are a multiple carer, each service imagines that you have “someone” to care for one person while the other person is having some sort of emergency situation. If only that were true! My craziest week started with FIL, who lived alone, being told at short notice that they wouldn’t give him a colonoscopy unless there was SOMEONE at home with him at night. Later, too late, I was told that if he’d said he’d lived alone he would have been the first one done, then wouldn’t need anyone. They should have asked him. So that meant he had to stay with us overnight. Nightmare, went to the loo all night, every time I got to sleep he got up again. No thought about opening the bedroom door quietly, then put on the main pull light, not the silent fluorescent light. He went back next morning. I was sleep deprived. Thursday, same week, mum went for a carpal tunnel op. No one had worked out that if she was walking heavily with a Zimmer frame, she would needs lots of support with her arm in a sling and no Zimmer. Again, they assumed SOMEONE was living with her, and could give all help needed. Ward sister told me on the phone I MUST stay with her. I explained I couldn’t, as I was going away for the weekend with my brain damaged son, a long planned weekend away with the steam engine actually. After a formal complaint mum stayed in overnight, and emergency care team arranged. Three carees all needing me the same week. Nightmare. All I can suggest is that you find out if your LA has an emergency care plan system. In Hampshire, I you join the scheme, they can provide SOMEONE for 48 hours until the crisis is over or YOU arrange something else. BUT it wouldn’t be overnight care!!!
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The page that the link in that old topic refers to was actually from Martin Lewis’s Money Advice website. I’ve had a search of his website but couldn’t find anything relevant.
Although old forum topics are still viewable here often links within those topics will be out of date and will return a “page not found” 404 error.
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Thanks for checking @susieq
I’ll be interested to see if the topic resonates and what others have found helpful
Hi @Victoria_1806 Since the covid regulations, there seem to have been a number of temporary changes that have become permanent by default, from what I’m hearing. It was always challenging to get overnight support at home, and it seems to have become even more difficult: at least, from what I’m hearing. As I’m not working in the field directly these days, I don’t have the same quality of information coming to me, and in this field you can get out of date really quickly.
Yes, it’s possible to get overnight care at home but it’s rare and it’s only going to be in very specific circumstances. They will be cases where emergency respite in a care home, or a long stay in a care home, is not going to work. These could be situations where the cared for:
- Has autism or another disability that means they will panic in an emergency and need someone there to support them. An emergency in this case may be a stomach upset, other illness, a lack of capacity to manage their needs without prompting or other support, or something really dangerous, like a fire.
- It would be especially important if a change of surroundings would seriously increase anxiety and cause unnecessary alarm. Someone with dementia might fit the profile for this, for example, as well as certain mental health conditions, autism, etc.
- Has a terminal illness and wishes to die at home, or where it would be dangerous to move them from their home.
There are almost certainly other circumstances but I can’t think of any offhand at the moment. All of those would at least make the consideration of overnight home support possible. Even then, you’d probably have to argue quite hard for the reasons why it’s essential.
Hope this helps.
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Thanks @Charlesh47 - validates what I’d suspected given my experience.
This is why so many of us literally ‘sleep walk’ into crisis care: Lack of resources, awareness and availability. So, there is NO overnight care (ie. a BIG lack of understanding/recognition) for long-term, chronic illness, caring at home.
For example congestive heart failure and its ramifications on instability due to lymphodema, difficulties toileting, breathing (fluid in lung accumulation if lying too far down in bed).
Having ideas, suggestions, support IF we need overnight care support, from my own experience is essential!
Victoria, in those circumstances, the patient should already have had an NHS Continuing Healthcare Assessment. In theory, this covers anything that is beyond the requirements of Social Services care. However, entitlement to CHC varies hugely from area to area. It is supposed to be available to anyone with very significant health needs, but in Hampshire, it’s severely rationed. The first step is for anyone with very serious health issues to have a CHC assessment which the hospital or a GP should be able to arrange. Again, GP’s may pretend they don’t know what to do. In her final days, mum’s GP finally got round to making an application, but it was rejected because he hadn’t filled in the form properly. I appealed, saying that indicated an urgent training need for the GP. Finally mum was granted CHC the day before she died, despite having 28 different health issues.
Thankyou, so very much for taking the time to document all this valuable information for us Victoria. Bless you and thankyou.
All needed here as we are struggling.
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Good luck. You can do this.
@friendhip123 you’re very welcome @bowlingbun & @Charlesh47 replies have helped me too
As you can tell, I’m very familiar with the fragile time you’re going through right now.
I’m sure you have very limited energy and time. From your post Newbie here, saying hi - #10 by friendhip123 I was relieved to hear your hospice have been v supportive. It does sound like you need more support overnight though.
I hope you can sort something out with them in the short term and perhaps they could even help you get some lived-in support if that suits or the family could help?!?
You’d said you’re choosing to carry on on your own for the moment. I hope the links etc can help you plan ahead. We’re here if you need other ideas
text/email if you’ve any questions on the overnight hardships - I’m VERY familiar with neverending days…my mantra used to be the ‘Sun will come up and the sun will go down and that’s the only certainty i could rely on’ when everything was in flux
it’s never too early to call for more support!