Is this par for the course?

Jennyc

Registered User
Oct 3, 2011
76
0
Kent
I got ill three weeks' ago. Happens quite often these days, I think defenses are down as my husband has pretty advanced Alzheimer's - he is up and down all night as well as needing everything doing for him all day, can't wash dress himself, feed himself, toilet himself etc and is unsteady on his feet. He started a day's daycare recently which at last gave me a bit of a break, but has got much worse this last few months. I wasn't able to get well and continue to care for him.

My wonderful daughter contacted Social Services and arranged some emergency respite for her dad. We're reaching the stage where we think he needs permanent care, I am at breaking point. So we are trying to turn the temporary respite into permanent care.

He's been in a care home about 20 miles away (nearest available in a hurry) for the last 12 days, and my daughter has been doing all the visiting, liaising etc although she has a five and a two year old and works as a physio for the NHS, in order to give me a chance to get better. We are now in the process of trying to get a place for him full time, Best Interest meeting next week. He seemed surprisingly settled for the first few days, didn't ask for me or seem a agitated, much to my relief.

Last night the phone rang and woke me at 11pm. It was the hospital calling to say he'd been admitted after a fall, fefusing to eat or drink and aggression - apparently he'd told them to f.... off. They'd already spoken to my daughter who'd answered all their queries about how advanced he was etc, and also asked them NOT to contact me in the night as there was nothing I could do. Any way they asked me the same questions. Needless to say, not much more sleep that night, but this morning it turned out he was fine, so they discharged him back to the care home, who much to my surprise were ok to take him back.

At midnight tonight the phone rang and it was the ambulance service to let me know they were on their way to help because he'd had a fall and they were going to help get him up. They thought they were ringing the care home, but had been given my number. My husband only weighs 10 1/2 stone. He once had a fall here, but eventually in spite of his panic, I managed to persuade him to roll onto his knees so he could get up with help of a chair.

The care home had been told that he tends to try to get up a lot at night, but because I was always here beside him, I would leap straight out of bed and make sure he was ok. Of course now he is in a strange place, in the dark, and there is no-one right beside him.

I really, really feel I can no longer cope, and he would be much better off and safer (I thought) with somebody is there and awake 24/7. But I seem to be spending my time in a state of panic instead of getting well again Is this the usual sort of thing that happens? I have no experience of care and care homes. I am terrified that no care home will want him, I never could have people in to help as it made him so angry and rude, but I have reached the end of my tether. SS have agreed in principal to fund as savings and income are below threshold, but what if nobody can cope?
 

Morty

Registered User
Dec 13, 2016
94
0
Southeast Ireland
Hi,well done on devoting years to care for him,my experience of care homes phoning is quite similar,had to put both parents into full time care or whatever it is,certainly not full time imo as staff ratios are shocking 1/9 or worse.The sense of panic is unnerving so just after you manage to bin the guilt for putting loved one in ,you see the reality of the not so full on care,the staff so busy and unorganised that first sign of a fall or a proplem they ring whatever number they have at anytime of day/night.Its chaotic rather than reasurring ,the sickening thing is lack of options,cant cope caring for them at home so stuck in limbo,I visit nearly everyday which is too much but the system is not good enough,only other option is to pay for a fulltime carer @ home.Sorry if i paint a bleak nursing home picture but thats my experience.
 

Lorna44

Registered User
Jul 16, 2016
229
0
Surrey
Is it a care home or a specialist dementia nursing home, because that makes all the difference.....
My mum's nursing home is great. She has fallen several times and they make sure how she is before making any decisions re ambulance etc. They do call me but if its late they would wait till the following day.
Good luck x

Sent from my SM-G930F using Talking Point mobile app
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,687
0
Kent
It looks as if decision time has arrived Jenny. It`s a tough decision even so and many of us will know how it feels and be able to identify with you.

However tough and upsetting , there comes a time when it`s a necessary decision as the health of the carer begins to suffer. If it fails completely it will create a crisis and the person with dementia will need full time care anyway, so better to arrange it while you are still able and are not forced to rely on others to decide for you.
 

stanleypj

Registered User
Dec 8, 2011
10,712
0
North West
I completely understand your frustration and upset. When someone has to go into a care home it's understandable that relatives assume that they are going to be safer and better cared for by experts. Sadly this is rarely the case. A carer who has had overall responsibility for their relative 24/7 will be an expert. A carer in a care home may be an expert but it's perfectly possible that they have just been recruited and are still being 'trained'.

So, for example, during the night, it is common for residents to be 'looked in on' every two hours. A lot can happen in two hours and a home carer who sleeps in the same room or very close by with, perhaps, a 'baby alarm' has a much better chance of dealing with potential dangers.

I would think that it is very worrying for most people as they gradually understand the reality and have to accept that, how ever often they visit, they will have to accept that they have handed over responsibility to others who, however good they may be, cannot provide the same safeguards.
 

canary

Registered User
Feb 25, 2014
25,048
0
South coast
Mum tends to fall a lot now and her care home have installed an infra red alarm to alert them as soon as she tries to get up and someone can go immediately to help her. It would be worth speaking to the manager and asking what strategies they have to minimise the risk of falls.
As Lorna said, I too am wondering whether its a mixed (dementia and non-dementia) care home, or whether its a dedicated dementia one. Mixed care homes often dont have much expertise in dealing with any more than the early stages of dementia.
 

Jennyc

Registered User
Oct 3, 2011
76
0
Kent
Thank you all so much for your helpful replies, it is a care home and website says dementia specialist along with care. Fairly good CQC review.

I feel so much stronger today, illness finally going away, that I realise I am probably hoping for far too much. Saw GP today who agrees, this is crunch time, and is sending supportive letter to SS for Best Interest meeting next week, as is my lovely Alzheimer's Carer's Group co-ordinator, and Carer's First contact. I feel much stronger for their support, though disappointed to hear only today that my husband has been refusing to take his medications for the 14 days he has been in care. I asked if they could maybe crush it up in yogurt or something, but they said they couldn't do so without my written permission. Needless to say I posted off the letter, and also emailed it this afternoon, but as they say he is getting more and more agitated, why did they leave it 14 days without mentioning it somewhere along the line?

Thank you so much all of you, for kind and helpful thoughts.