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Don't want to stop caring - Page 2 - Carers UK Forum

Don't want to stop caring

For anyone who is bereaved or no longer providing care.
Bowlingbun. That's exactly what I am doing. My daughters and I are keeping diaries. We are as nice as pie to their faces. And I am asking questions of what I already know the answers to. When he goes out it my family and I that are taking him out without anyone with us. They don't have a problem with that. We are waiting on this doctor to put her cards on the table before we act. I am keeping very cool and playing thus straight up the line. But I am furious and feel betrayed by professionals I trusted. They seem to be adding 2&2 and making 5. It's confusing. I'm reading everything i can get my hands on so I'm getting an education. Headway sent me a large package of information about head injury yesterday. I'm reading my way through that. Information is power. I won't be railroaded by any doctor. I'm not going to give up on my hubby. I don't want him to ever think I abandoned him.
That's good news. The most important thing is what you and your husband want. I bought a voice recorder when I had some difficult meetings to attend, but unfortunately I didn't hide it and when the chairman realised he asked me to turn it off, for reasons of confidentiality. I was assured that the meetings were being taken by a "professional minute taker", having read her minutes I was very disappointed....but then realised that they were probably edited by the chairman who didn't want anything adverse recorded. So if you take one, make sure you hide it!
Thanks for all the advice. Was thinking of keeping a video record of my husband when we take him out as proof that he's ok with us. I keep my own notes at meetings. It makes the consultant stammer and nervous which gives a little bit of amusement. They haven't asked me not to make notes so I'll keep making them. Will keep everyone posted. This forum has been a life saver to me. You are the only ones that understand what a challenge it is being a carer. No one outside of caring know how lonely it can be.
I must admit I'm astounded at reading this post. What a awful situation for you, your family and of course, your husband. I cannot see where the justification comes from any more than you can for sectioning (in effect) your husband which my understanding was done only if the patient was a danger to himself or somebody else. Its a long time since this one of my hospital duties!

Has your husband had a Continuing Healthcare assessment as Bowlingbun mentioned? Is any of his behaviour related to the COPD? When Mum was in the final months of her life with COPD, her behaviour would at times be extremely difficult and much of this was a result of the lack of oxygen etc. I obviously appreciate that your husband has other medical conditions which are contributing too.

I really don't know what to suggest to you other than keep on doing what you are doing - I have personal evidence that no instiution is bigger than a determined woman so go get 'um!

Bell x
No accessment of his continuing needs has been done as far as I am aware but there has been a lot of other doctors seeing him. We have never been informed when these other doctors are seeing or given an opportunity to meet with them to ask question. Further more I asked on tuesday when we has our meeting when my husbands pet scan would be done and the consultant told us sometime in August. Even though she knew it was being done that Friday. My husband had told me over a week before that the scan was being done on the 10th He sometimes gets confused so I wanted to ask the consultant. Why was she withholding this information from us. It's bizarre to say the least. When I take my husband back after his day pass he is being questioned by more than one nurse and they're asking the same questions. My hubby asked me what was going on he says that he thought they were trying to catch him out. We have not told my hubby what's going on he does not know what they have preposed to do with him. Our solicitor says it sounds like they are making this personal. But why would they do that. We haven't done anything.
I too have read your past posts and I too would be feeling extremely distressed in your situation but I wonder whether how feasible it would be to care for your husband at home with very little support from services. I also note that your daughters have children and that one of your sons has a mental health problem and I am wondering how much support they would be able to provide. Only you know the answer to these questions and I am not suggesting that you cannot manage, just that this is something which you need to think through carefully even though not being able to spend the time your husband has left together is heartbreaking because if the answer is that you cannot cope indefinitely the separation will only be delayed, perhaps only briefly.

If you do reach the conclusion that you cannot realistically continue to care for your husband it is worth noting that any deprivation of liberty should be the least restrictive possible taking into account any known risks. And it is also worth bearing in mind that risk assessment is not an exact science because, whilst we have a substantial and growing amount of knowledge about how the brain functions and malfunctions, comparatively little is known about how the mind works which is why mistakes are sometimes made.

Whatever decision you finally reach, in your situation I would be concerned that my husband did not yet have a definitive diagnosis and that without a diagnosis ensuring that he is receiving the correct treatment is not possible.

I also noticed that your husband's confusion was at one point attributed to the medication which he was then on and that this was being slowly withdrawn, if this made a significant difference has the hospital taken this into consideration or is it still basing its decision about your husband's future on how your husband presented when first admitted?

I would also be asking on what grounds the hospital considers that your husband constitutes a sufficiently significant risk to himself and others to warrant permanent hospitalisation in a secure psychiatric hospital, again this is about risk assessment, and ensuring the validity of any evidence used to back up the decision that your husband presents sufficient risk to be detained for the rest of his life. You rightly question why, if this is the case, your husband is deemed to not present sufficient risk to be prevented from spending several hours a day with you and your family, you do not mention whether this during this time he is accompanied by a member of the nursing staff, if he is not it would suggest that he currently does not present a significant risk but it may be that his condition is so unstable that this could rapidly change, something else to question perhaps.

As Scally has pointed out your husband's views should be taken into account, if he has been found to lack mental capacity under the Mental Capacity Act, I am not sure if the Act applies in NI which I believe is where you live, you would need to check this, he is entitled to have a Independent Mental Capacity Advocate to ascertain his wishes, the fact that someone lacks capacity in one area of decision-making does not alway mean that they lack capacity in others.

If you do believe that you are able to continue to care for your husband at home you will need to be not only determined but knowledgeable in order to argue your case, pretending that you do not know what you do know will enable the hospital to simply say that you do not have sufficient understanding of your husband's condition to be able to make an informed judgment about what is best for both of you, this may still be argued even it you have shown that you do have sufficient knowledge but it will be harder to justify.

I wish you luck, this is a terrible and distressing situation to be in and I hope that it can be resolved in both your best interests.
Update
Pet scan was done on Friday. Got a phone all yesterday from the hospital. The scan showed no dementia, tumours, or clots. It showed a small amount of scarring to the frontal lobe which we already knew about. The scaring has not caused any damage that would cause any significant impairment The was no significant brain injury that the consultant was so sure they'd find. I've had my husband home overnight last night and just got a phone call from the ward to tell me I can keep him for a second night. All the nursing staff that I have gotten to know think that I am more than capable of caring for my hubby. And off the record don't agree with the consultant. I spoke to another doctor yesterday and she said that it is a mystery why my husband is so confused. She thinks it could be a number of things his copd could be a factor or the chest infections he keeps getting well I feel a lot more optimistic since last week. Needless to say my next meeting with the consultant will be more interesting.
Delighted with your news so far. Hope the consultant sees sense. Infection can cause dementia like symptoms and does not always have a temperature with it to give a clue.xx
Good news. Hubby has been discharged from hospital so delighted to get him home Image
Ah, thats good news - hope all goes well