Advance Care Plan (ACP) info and Night Tim... - PSP Association

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Advance Care Plan (ACP) info and Night Time Risks & supervision advice please

Red6875 profile image

Hi All,

Hospital sagas continue as my Dad, following second aspiration, is now in week four of his hospital admission. We're trying to break the cycle and get him home asap and the doctors have been helpful in advising and guiding us through updating his 'Advance Care Plan (ACP)"* on his NHS/Continuing My Care recorded so it now better reflects his wishes, and hopefully future treatment will be managed 'in the community'.. . this is certainly something I'd recommend other people/carers to look into and discuss with your GP early on.

*This can go hand in hand with an 'Advance Decision' document - visit mydecisions.org.uk for the free template and guidance.

So as we try to sort out putting a care package in place, we are concerned that there's no provision for social services to offer 'waking night care' which is of great concern. My dad suffers from impulsive behaviour, such as getting out of bed/chair unaided. Its likely my dad fractured his hip from a fall in the early hours or a fall on the hospital ward as he wasn't adequately supervised. Has anyone been successful on securing funded night care? If so, how did you manage to get it? If not, what were your strategies for coping without (equipment, alarms, managing risk)? Likely dad will be discharged next week so this is a major concern for me and my mum, whose his primary carer. Any advice greatly appreciated!

10 Replies

Hi Rws6875 One of these ideas may help you both.

My hubby was put on a mattress on the floor as he was prone to falling out of bed.A sensor mat was also used to monitor any footfall or pressure if he was slipping.

These may be more amenable for use than bed sides which restrict the patient's movements.

Hugs

Jen xxx

Hi. I agree with Jen that a mattress on the floor is a good idea. I also had a baby alarm monitor so I could hear if my husband was on the move which helped a lot.Sadly night time waking care is almost impossible to access and currently one only has the option of finding private care. It is something that I am still fighting with Social Services about through a forum that I am on. No luck at present though. However, my husband had direct payments help and on the quiet I was told that I could use funding to pay for a night care and do without something else but as waking night care is costly so I could only do it very occasionally. My family also very kindly helped when they could without pay. Sorry that this is probably not of much help. I will keep on fighting. Good luck to you and your Mum. Love AliBee

Night Respite

Caring for someone at home, saves the country a fortune

but you’re expected to carry on caring,

and deal with exhaustion.

You’re expected to care with love and compassion

but when you ask for some help

it’s met with rejection,

as what you’re requesting, is just not an option.

You can have 3 hours on a weekday,

they say with a smile

as you try very hard to choke back the bile.

Can’t they see that you’re desperate,

not being hostile,

that these hours, though a blessing,

are hardly worthwhile

and won’t help with the exhaustion

of your current lifestyle.

What you really could do with is a good night’s rest

and true understanding that:

help after dark’s a valid request.

That:

you’re at the end of your tether and totally stretched,

That:

you have to keep going, not give way to stress,

and that because of it all you’re feeling depressed.

You really need someone to help in the night,

to change the sheets,

be there for your loved one

and help them keep quiet.

You really need someone with funding

and a degree of insight

to see that:

the time you really need off, is during the night,

as its sleep that will give you the strength to keep caring

with patience, once it is light.

Caro2132 profile image
Caro2132 in reply to AliBee1

As always your poem is so so right. Thank you for being our voice😍

Caroline

easterncedar profile image
easterncedar in reply to AliBee1

Oh my. Brilliant and very very true. Thank you.

Hi I can appreciate your dilemma as I have been in a similar situation with my wife. We have a lifeline system supplied by the local council that consists of a control box that calls my mobile if she get out of bed, or falls out more likely. There is a sensor pad in the bed and she has a pendant that she can press. Under my pillow is a vibrator that wakes me, I am deaf by the way so at night, sans earing aids, any other means would not work. There is also a strobe light that flashes. They have never failed to wake me in timely fashion to assist when necessary. I am sure your LA will have a similar setup contact your OT or surgery they will know who to contact. Good Luck.

Glad to hear you have put the ACP & Advanced Decision documents in place. These along with a DNR were useful when dealing with out of hours doctors towards the end who didn't know Mum or PSP. Mum too had a hospital acquired fracture as a result of them not understanding the reckless element of the condition & not involving me in the risk assessment - so frustrating. I did raise a complaint but very much felt they closed ranks, which is so disappointing.When it came to night time care, Mum wore pads and we stressed that she was to use these not get up - she understood but "recklessness" would at times take over & she would try to get up. As her mobility decreased we put up sides on her bed as we felt she would be unable to climb over them, some people think they are more of a danger than a help as people may try and climb over them or get caught in them somehow - you know your Dad and will be able to judge.

Mum lived in sheltered housing that had someone on site 24/7 and she had a falls alarm, so when she fell she was able to call the duty manager and they were able to go to her immediately. There are various falls alarm systems & pressure mats available, your OT should be able to advise or Age UK provides one. Night time care was never offered.

Best wishes to you all. Though there will be tough times ahead, I hope you will still be able to find moments of joy, which become very precious. Try & find the time to notice & appreciate them. They are what kept me going. That a great Community Matron & some fabulous carers. xxx

Hi sorry to hear about your struggles CHC funding was repeatedly refused for daytime care as well as night time - you need to fight for it and speak to local councillors and MPs asap and keep rattling the cage of the continuing health care team plus the CCG 😩😩

Hi everybody, maybe i say a stupid thing but have u try with NHS continuing Helthcare?we just have the finel assesment, and my husband got the full founding in social care.

For the rest i still sleep with my husband and i am with him 22 hours every day and at the moment we doing well.

i have to say ( very sadly) the only moment my husband is in danger is been when in hospital.

love to all

anna

This is an issue for us as well. I've considered the mattress on the floor, but as my husband is 6 ft and I can't lift him, I'm not sure I'd be able to get him up from floor after he loses his ability to pull himself with his arms. We use a chair now- as when he falls, he can pull himself to his knees and then stand, but that is not going to work long term. The Depends pull ups don't always hold all of the urine, so we also have a hand held urinal, commode near the bed.Thinking of moving the hospital bed to the family room, so he can be more involved in family life. Even his lift chair is presenting some difficulty- as he forgets it lifts him- and I have to remind him. This really is a full time job and it's not easy to train family members until they experience it themselves.

Oh Debspottery, That’s so much what we experienced. I wish I had helpful advice. Catheters, convenes, lift chairs, elks and hoyers, maybe something can work for you? No problem is solved for long, but you keep on going.. Just want to say you aren’t alone.

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