@Jackie66 BIG hug
if you have the energy could you try to call Carers UK Helpline. Ask them if there is a charity like AgeUK or someone who knows about these kinds of situations who could accompany you.
For information and signposting, our telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm (including Bank Holidays).
Or call Dementia UK Admiral nurses
But I also wanted to say, you’ve been doing all you can for him and you’re exhausted. The social worker has got the meeting and it sounds like the finances will be sorted. So, it could be good to talk to someone AND get some rest now, as best you can.
I can understand why you want to have him nearer to you, to see him..but may I offer some tough love advice that for HIS needs to feel comfortable and safe - given his Lewy body Dementia - it may be better not to see him everyday
I’m sorry to say that…but as you said, the sepsis has probably made his dementia worse, in addition to his mobility and this is another reason why he needs more support than you can give.
The social worker sounds good from what you’ve shared. So I’m crossing fingers the meeting goes smoothly.
Let’s focus a bit more on you now…Have you managed to get more sleep? What have you had to eat?
BIG hugs
Ask her to define what she regards as a “statutory meeting”?
To my way of thinking (my Business degree involved 3 years of Business Law) I would argue that the Care Act required assessments, and so did the rules covering NHS Continuing Healthcare. (I can’t remember which law, no time to check right now).
Thankyou i feel very alone apart from you and the support here. Dont know where i would be without. Have you any idea what kind of thing they are likely to expect me to make a decision on?
Ive been thinking of sending to more suitable place but without power of attorney i expect it could be an issue.
John has been vegan for years and really was good with his diet but the home havnt a clue. He had jam sandwiches for 3 nights im really sad about that im finding im taking more and more food in, i will discuss that at meeting. Iwill duscuss this at the meeting
Were you involved in the decision as to where John would go?
Let me tell you about my mum.
When my mum needed a care home, I was told the council was planning to send her to the nearest place with a vacancy. They measured “as the crow flies” completely ignoring the fact that I couldn’t fly over water. Southampton Water was in the way. The drive would have taken me at least an hour each way. Fortunately l had read the Continuing Healthcare rules, which specifically mention the Human Rights Act, especially the right to a normal family life. Mum lived about 6 miles away from me, my nephew, niece, brother and sister in law all lived in the same area all our lives, and we even shared the same doctor’s surgery.
I knew our council had a website listing all vacancies in Hampshire, so whilst I went to look at other homes, dragging out the decision, I waited until there was a vacancy just a mile from me, which I pass going to and from the shops, and it was soon arranged. Sadly, mum’s CHC assessor was deceitful, and told lies so CHC wasn’t granted, but mum had sold her house and could fund the placement herself. After 30+ years of supporting her as she became increasingly disabled, it was lovely to be just daughter again. I was welcome at the home whenever I visited. We had a few precious months before mum had a series of TIA’s, infections etc. until she died at 87.
From this I would suggest that you are proactive. Look at the Care Quality Commission to find out where the SMI (Severely Mentally Infirm) homes are in your area. It’s a horrible term, but you want this to be your husband’s last placement which can deal with all eventualities until he dies. Visit the homes nearest you first, making an appointment with the Manager/Matron.
I’ve chosen homes for many people, it’s much easier than you might think. Just ask yourself if YOU would be happy there? Can they cope with your husband’s special diet? Can you get there easily? Most places have separate areas depending on the severity of the illness. Find out if your LA has a vacancy list.
An ambulance man suggested to me that the second visit should be unannounced around meal times. Does the food smell nice, are staff helping those who can’t feed themselves? Are the staff pleasant and friendly to you, as you look round? I know just how daunting this is, but have confidence that your husband would want YOU to choose where he spends the rest of his life. Make sure you will be welcome there too.
Never visit more than one home a day. Make notes. All homes should have a brochure explaining what they can offer, and details of extra charges, like newspapers and hairdressing. Mum’s home was cashless, mum could have a paper every day, and it was put on an account which I settled every month, using mum’s account.
Dear Jackie66, Im sorry you are in this situation,
Regarding your opening post as to whether anyone has experience of transferring a non mobile person from bed to toilet, chair etc. I have lots of experience more experience than I’d ever wish to want! It is possible but I absolutely do not recommend!
I am also vegan and have been for years and years, people get worried about what to fed someone who is vegan and think its difficult, expensive with lots of complicated ingredients needed, of course its not all. Take a detailed plan of what his normal meals are like, if there is something obviously more difficult to source then yes of course offer to provide it for him but if they are saying they cant provide a soy yoghurt then clearly they are not able to sufficiently able to cater for his needs and the SW needs to take note of that fact!
Regarding not having POA and requesting a different care home, this should not be an issue, we did not have POA for my mother in law but insisted the care home the LA wanted for her was not a suitable distance for her husband or children to be expected to travel. The care home was the cheapest for them hence picking that one but we made our case on grounds of the care act and maintaining family ties and won.
Look after yourself x
The legislation about advocacy is part of the Care Act 2014. It’s not about statutory meetings but the minimum standard is for Care Act Assessments - but NHS Continuing Care is referred to in the Care Act as an assessment under the Act, so it’s included. It would also include for OT assessments in relation to a Care Act Assessment.
Im guessing im being fobbed off. This meeting is next Friday the social worker is going to read the care notes. Im hoping a lady from intensive carer forum is going to be with me shes asking her boss
Hello Torchie,
5 days today a jam sandwich i confronted the nurse i said couldnt he have a nut butter. She said hes got vegan butter, i said no thats a spread say to have in a vegan cheese sandwich. Anyway manager came out and said we ask him what he wants for tea we have to, but hes not thinking clearly i said can you remove jam sandwich from the choices as its no protein nothing. He doesnt really like white bread im so angry they told me to write another list so i will do that. Ive been and got almond butter and some other foods tonight, at this rate i be taking a weekly shop in…
Hi Bowling bun, yes i was involved the soc worker even drove me to view them i felt under pressure to make a decision it was only 2 weeks though or i would have waited and viewed more. I greatly appreciate your advice as you have been through so.much yourself, im sorry you had to go through all that too.
I got to the home today and there was a letter cqc have put them under notice to improve safety. The meeting went on this afternoon about this they said they going to enlarge a room and decorate, that isnt changing i really think they not going to either.
I will try and get a list of care homes with vacancies most are about an hours bus journey for me, apart from one very close by tgat is where i woukd like him placed. It would make taking all the laundry back and forth easier
Jackie, what you have written has a huge bearing on things.
If you do not drive, then that really changes everything.
Stress the fact that any new home MUST be easily accessible for you to maintain a normal family life under the Human Rights Act, especially as you get older.
Make a formal complaint about the refusal to provide a Care Act Advocate.
Tell CQC about the jam sandwich diet.
I know how wearing all this can be, but whatever is decided in the next month is seriously going to affect the rest of your life.
Hang on in there.
@Jackie66 you have been through it, and @bowlingbun gives some good advice from all the experience of the process. This is the great thing about this forum, so much expertise.
Just know we are all here for you and send our support
Thankyou i usually have 2 days to myself it doesnt do a lot as im not sleeping well and not cooking often as my apetites been affected, i dont seem to have lost weight though.
Its very draining putting one foot in front of the other right now, im 68 i was walking very quickly before all this. I just hope i can find strength to get through meeting and everything i find stuff like that too much it goes over my head. They had a meeting yesterday i only found out by lettet when i arrived, the cqc have told them safety has to change they got an amber score again as they arent well led it says. Caring is green though and thats only one that is
@Jackie66
I have a little idea of how you feel re not sleeping,eating properly and all that goes with it. I was about 63/4 when I started to notice my hubby’s decline. Very subtle to start with. When he eventually went to hospital then the nursing home I could hardly swallow ( shock I think). Started taking a multivitamin which seemed to help . Have you thought of having a blood test for thyroid or vitamin deficiency? Stress and heartbreak affects in many ways . I too felt was having to care manage at the nursing home.
When I’m tired I can’t cope very well, or think straight.
I was suddenly widowed when just 54, disabled, nearly killed in a car accident 3 months later caused by a teenage driver. I had a brain damaged son and mum was very ill. Here are some of the ideas I followed.
When I can’t even concentrate enough to sew (my only hobby) it’s a personal warning sign.
Don’t try to push yourself to do more than the bare essentials of anything.
It’s better to conserve your strength, physical and mental, put yourself on “light duties”.
Don’t worry about not sleeping, concentrate instead on relaxation exercises. Just simple stuff like tensing and relaxing muscles. I don’t sleep well, but have a Sky box in my bedroom and “watch” things like Downton Abbey” and “Death in Paradise” that I know really well. It works for me, I listen then nod off.
Try a visit to the hairdresser, a massage, or any other treatment that forces you to be still.
Even a boat trip or visit to the cinema. Just be still, give your body time to rest.
If all else fails, ask your doctor for a low dose of medication to help you relax. I didn’t want pills but realised I needed pills after 2 months of no proper sleep, doing accounts at 3am.
Thankyou so much Bowling bun for all your advice, i have listened and today im totally resting ive not been sleeping so im taking today for sleep if possible.
Thankyou to all of the kind people on here i wouldnt know what i was doing without your advice x
@Jackie66 Whenever you go to a meeting, take notes. And always interrupt if you don’t understand something, and ask them to explain. They have a duty to make things clear, but often whizz along to get through the meeting quickly. It’s your husband’s life and it’s your life they’re messing with.
Thankyou Charles for your message, yes will make notes. Fortunately i have the lady supporting who works for the Carers intensive locally here for people who struggle like myself…still not looking forward to it
Hi Anne
Thankyou for replying. Im not sure about a contract what would that be exactly sorry i havnt been told anything. I will respond to your other message tomorrow.
Hi @Jackie66 as you were paying for the respite there would have been a contract between you and the care home. I doubt they had given you a printed contract (with our NHS we are just not used to thinking of care being a contract, but the care home is). So they will have implied terms into their contract, the main one, obviously, to be taking care.
From all you say they haven’t done that, not even meeting his basic nutritional needs. He developed an infection in their care. I would say that they have breached their contract.
When there is a breach of contract they are liable for paying damages.
Your losses are the cost of extra care and the cost of the extra care he is now going to need. That will be based on how those losses can be linked to their breach, which I think they probably can.
I imagine when you point that out to them their attitude may change.
They will deny it I am sure, they want to avoid liability and I doubt that the social worker will be much help.
But email them with this and see what they respond perhaps? More in my message
Hugs