Is anyone awake to hand hold through a hard time?

Please don't let protocol stand in your way!

I am not clear whether the memory clinic he attends is part of a full dementia service, because that is what he needs. An EMI consultant and their team of community nurses etc. need to be overseeing his care. Please press for this.

You deserve your wonderful soaky bath - and I am a bit jealous as I cannot get in and out of our weird corner bath! I hope you are able to get access to the right sort of care for your very own awkward old bugger! Good luck.

too.

Yes. I know what you mean about him being your "awkward old bugger" and I guess I would feel the same. But you must take care of you too.

I agree, what difficult lives you have, so sorry.

Wow, I feel overwhelmed almost to the point of tears by the support I am getting here. He is under the care of our local Memory Clinic, not in the same hospital, but in the same health authority. Lucky Girl thank you so much for your advice. One of the consultants here, who saw him when he was on the observation ward last week, also works in the memory clinic, and has been helpful in the past.She is not his consultant on the ward he is on now, but I could try to get to talk to her, although it might be breaking their professional protocol.
I agree that this current situation may be a way to get Social Services off their backsides, and get the help we need. Thanks for the info about continuing care at home.
I have spent the last couple of hours at home, not able to sleep unfortunately, but had coffee, toast and a long soak in the bath. I have promised my husband I will be back after lunch, so need to kick myself into gear. When I left he was about to have an ecg because of his chest pain. However, I think he might have injured himself when he was agitated last night, or it might be acid in his oesophagus, or a pain connected to his pulmonary fibrosis - he has been even more breathless than usual for long periods due to agitation.
He is an awkward old bugger, but he is MY awkward old bugger!

Some of you have things very hard.

Oh was in hospital and I was rung often to reassure him ,I had no way of getting in to see him without the help of the Children , mind you he was convinced I was part of the conspiracy , now he is home with carers coming in four times a day , it is such a help . Not only do they care for him but they try and chat to me when they have time , and give me tips on how to help him and myself .It means I can nip to the shop while they are here , or even just out to the yard for a bit of fresh air . I also pay for a sitter so I can continue going to the Seniors club and my Painting class . I had to abandon the bowls club , too tired anyway

I am so sorry for you tingaloo.

I don't think you should go to the hospital when they call you at night. I know that sounds harsh, but you are probably not able to have that much effect on him. I think the hospital are falling short of their duty. You need to be considered as well. As Galen says, they should be able to calm him with modern drugs.

I really think you are going to have to be assertive here. Tell her hem you are quite willing to be there during the day, but at night you need your rest.

And tell the social worker you cannot manage him yourself at home,

Every good wish.

Good advice from luckygirl

So much sensible advice. Don't let him come home until everyone is up to scratch.

Tingaloo - acute medical wards are not good at treating people with the level of dementia from which your OH is suffering - it is the right place to deal with his pneumonia, but now that this is under control, he needs to be under the care of a specialist in dementia illness. Is he normally under the care of such a specialist? If he is, you need to ask for that specialist to be informed of his admission and for one of their team to come and assess him with a view to providing treatment that might help him to feel more calm.

If he does not have such a specialist, then it is time for that referral to be made.

I would strongly recommend that, in spite of the fact that being in hospital is worsening his dementia, you do not agree to his discharge home until full assessments have been done by Social Services. You say that you have been waiting a long time for these assessments, and the current situation can be used to your advantage, as SSD has to treat hospital "bed-blocking" as an emergency. You should have a full Community Care Assessment and insist upon a Carer's Assessment (https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/carers-assessment). The link is to Carers UK - please do contact them and get some direct advice in this situation.

Before he leaves he should also have a Continuing Care Assessment, which is a way of deciding whether he is eligible for his care outside hospital (whether in his own home or a nursing/residential home) to be paid for by the NHS. Do not let anyone tell you that this only applies to people in nursing/residential care - it is not true! (https://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200359&gclid=Cj0KEQiAycCyBRDss-D2yIWd_tgBEiQAL-9RkswDfyQaoqV2rJ9_EAl8shID5wKg2AjAiCeGv_rnagoaAnXT8P8HAQ) This link is to the Alzheimers Disease Society who help with all kinds of dementia.

His hospital admission is unfortunate and is clearly very distressing for you both, but it may be the key to unlocking some of the help that you so badly need. If there are times at home when you feel frightened of him, then you must tell the social worker this when he/she makes the assessment; and also the dementia specialist consultant. It is very distressing indeed when this situation arises, but it can only be tackled if you are able to come clean with those able to help you.

My heart goes out to you and I hope that some of this advice might help you to make the next moves. I worked as a hospital social worker for many years, including on a dementia unit; and I have also faced similar problems in my own family. I managed to get Continuing Care Funding for my father and it made things a lot easier. If it would help to pm me, then please feel free to do so.

As a nurse I think I am correct in that you ve rights for your self you might find that your husband is eligable for Contuning care funding and the this might fund other care .The Alheizmer s society do in some area provide practical support (I used to assess their workers).

Hoping today brings some progress, you have some wonderful and experienced people holding your hand on here. Wishing better things for you and your husband, soon. You were the first person in my thoughts when I woke this morning.

Good morning tingaloo . How are you and your husband this morning?

My Admiral nurse did most of the phone calls for me to social services, the hospital, age concern, everybody. She was with me a lot and stayed overnight in A&E with Dad to give me a rest. She spent a long time gaining his confidence. She knew what to do, who to call when I didn't.
You are going to need more help, it's awful how slow they all are, they fill in their forms then disappear.
In desperation I called my MP, they got things moving for me and very quickly. Hope this helps.
My heart really goes out to you Tingaloo.
Keep posting.

I think you need to turn your phone off and get some sleep at home. I think it's unreasonable of the hospital to be calling you all the time. I think they should be able to cope. As galen, our resident medic has said, it sounds as if he needs sedation.

I hope you get the help and support you need very soon

I am trying to remember from my age uk stint in information and advice.
I believe you need to ask for a section 2 assesment from social services before discharge and also a carers assesment to see if you are fit and able to cope with this,without sleep and respite you are are clearly struggling.
Are you thinking that maybe time has come for residential care as you are becoming frightened of some of his condition...I believe you have to stand firm as I have supported an elderly friend through this when her twin suffered this way to get the best care for him.

As always I would suggest Age uk information and advice ...they have regional as offices around uk ..they can offer advocacy advice,befriending and many other ways of support ....meanwhile I am thinking of you tingaloo.....and sending you a big hug at this lonely time for you xxxxxx

You are in my thoughts and prayers Ting

Don't worry about not taking your Thyroxin tablets they have a accumulative affect so it won't matter if you miss an occasional dose. Perhaps you could put a few in your handbag so that you can take them wherever you are.

Thinking of you.

Tingaloo yes, the time has come to kick up a fuss. This should never have been allowed to get to this position. Very bad service from the NHS indeed.

Never mind it being the weekend. You state your case, politely but forcefully, and refuse to budge until you get someone to do something

Keep on and on, your DH needs you to do this for him and you need some help so you don't go under yourself.

Best of luck and ((((hugs))))

Tingaloo I've got no advice but I am thinking of you.

Dear Tingaloo, we are with BIL and SIL this weekend. He is rapidly being taken from us by dementia and is very aggressive verbally. SIL has a carer every morning to help get him dressed, washed and shaved - not always easy! She is becoming so worn down by his condition that we are trying to put together some extra help in conjunction with their sons to ease her load. Do you have family to help? They may not be able to do a lot but a short respite can be so beneficial for you. Get as much help as you can from anywhere. Remember that without your health being a priority your ability to help your DH will be compromised and as others have pointed out he would not want you to be so distressed and unhappy. Be kind to yourself. There is a lot of support for you out there and here also.

Tingaloo I do hope you get the right help soon for your DH and yourself.
Don't think of it as making a 'fuss'.
Think of it as helping the staff to understand what's going on with your husband. You shouldn't have to be coping with this alone, not to mention sleeping on a chair because they don't seem to be able to manage.

tingaloo, I hope things are more settled for you both today. Do you have any family members who can give you a bit of support just now?
Like you have said, I think you do need to kick up a bit of a stink today - for both of your sakes. Has your DH had any respite care at all? Could this be arranged, urgently? Perhaps if so, his (and your) needs can be reassessed and a proper package can be provided? Stay with us and let us know how things go. Thinking about you.

I feel for you tingaloo. I have not coped with this myself but I have a few friends who have/are currently. GA's advice is good.

My mum became violent while in her first care home and they were unable to cope with her. She was already under a psychiatrist who arranged for her to be taken into a specialist dementia unit where they rethought all her medication and started her on mementine (?so). It has helped her enormously. She is now in a lovely home where the the staff love her!

Keep talking to us- we have wealth of experience between us.

I hope the day is easier for you than you fear tingaloo
Love and strength.