Is anyone awake to hand hold through a hard time?

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.

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).

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.

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

Good advice from luckygirl

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.

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

Some of you have things very hard.

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!

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

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.

too.

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.

I am a retired GP. I am sorry you are having such a hard time Tingaloo. If you speak to the consultant or most senior Dr in team available it would be good to ask for a referral to the Psychiatrists for the Elderly. This should be an urgent referral. The Psychiatrists will have various options re medications to prescribe depending on your husbands other medical conditions. If he is recovered physically they may be able to transfer him to a psychiatric bed for a period of assessment. You need to say you have become frightened of him at times and feel at present you cannot cope alone at home. Physical illness often exacerbates mental health conditions. He may well improve to some degree. Wishing you strength and courage.

OH has improved mentally since he got home . He is to be seen at the Memory clinic on Friday , he has been assessed before for this , but there is a big backlog . As far as I know the Memory Clinic is a kinder description of the Dementia Team

Good! Another medic on the team. I hereby retire!

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!

Ooops sorry posted twice. I am so used to having to repeat things ad infinitem....

I agree with all the comments on here. My mum became impossible to cope with when her dementia became worse and the Home had to take full responsibility regarding correct sedation although they always asked me before giving any drugs.

When my husband had cancer and suffered two strokes I had to give up control to the hospital. I hated doing it but he needed more than I could give in the way of physical care but I continued to support him emotionally until the end.

It's so hard to do this and so so much harder for me with my husband because he was only 67 and mum was 90 and had had a long life.

tingaloo - my heart goes out to you. I hope things are working out for you both.

Galen please don't retire!

Ive given up full registration now as difficult to revalidate. I'm 71 in a couple of weeks! The D of Justice say I'm too old to work at 72. My brain is obviously going so I'm looking round for my nursing home!

tingaloo I'm sorry to be late picking this up but I am so glad that there is so much good advice here and that you are feeling positive about taking it. I hope this weekend isn't going to be as bad as last night was.

I know this isn't related to the thread so apologies!
Galen you make me feel lazy!. I retired at 56 worn out with General Practice and caring for my elderly blind Mum at the same time. I have no regrets. I love retirement but am sad to see the NHS going through such difficult times.

We're still here

I hope you and your DH have a peaceful night Tingaloo