Undiagnosed Dermentia ??

[gray]

My mother in her 90's has been admitted into hospital like for 3 weeks (do not ask for story) she still has not been assessed by memory clinic. But psychiatric nurse has said the problem is undiagnosed ? Our family all believe it is dermentia. A doctor reported it to be Lewy Body, but did not confirm it or follow it up.

Psychiatric nurse has definitely ruled it out, but is she qualified to say that?

What position does that leave mum ?, as she does not have a diagnosis. Psychiatric nurse and social worker say she needs 24hr care in a home? with the only concern of not being able to get in and out of bed.

Are they obliged to look at home care as an alternative, with all possible home alterations to accommodate her.

She would be self financing for care, as she has money and house.

What 'say' do I have in what happens to my mother.

Would she be able to get 'NHS Continuing Healthcare' as she has problems with mobility, long term medical, mental disorder, behavioral and cognitive disorder.

I need as much advice before meeting on Monday. As we would like to keep her at home, as she had an agreement with dad that they would never go into a care home. Do we have to respect her wishes.

 

[LadyA]

Do we have to respect her wishes.

Welcome, @gray . Oh, if I had a euro for everyone who's loved one did not want to ever go in to full time care - including my late husband! Sadly, while we do our very best, there often comes the dilemma of their needs Vs their wants! If it's not possible to care adequately and safely (both for the person and the carer) at home, then there's no option.

 

[copsham]

My mother in her 90's has been admitted into hospital like for 3 weeks (do not ask for story) she still has not been assessed by memory clinic. But psychiatric nurse has said the problem is undiagnosed ? Our family all believe it is dermentia. A doctor reported it to be Lewy Body, but did not confirm it or follow it up.

Psychiatric nurse has definitely ruled it out, but is she qualified to say that?

What position does that leave mum ?, as she does not have a diagnosis. Psychiatric nurse and social worker say she needs 24hr care in a home? with the only concern of not being able to get in and out of bed.

Are they obliged to look at home care as an alternative, with all possible home alterations to accommodate her.

She would be self financing for care, as she has money and house.

What 'say' do I have in what happens to my mother.

Would she be able to get 'NHS Continuing Healthcare' as she has problems with mobility, long term medical, mental disorder, behavioral and cognitive disorder.

I need as much advice before meeting on Monday. As we would like to keep her at home, as she had an agreement with dad that they would never go into a care home. Do we have to respect her wishes.

 

[gray]

I am right it saying if there is nothing diagnosed then there cannot be a care package. As there is nothing wrong with her.

The hospital? has said there is nothing physically wrong with her (obviously not seen her).

 

[copsham]

I was in your position 5 years ago. I really wanted to keep mum at home. She was in hospital for 8 weeks and deteriorated due to lack of care, partly. They said she had vascular dementia then changed their minds and said it was dementia. We got her home, to her home, but it was very stressful. We got full-time nursing assistant care , but it was impossible, as the one individual needed days off and who pops out went a bottle of milk is needed etc, etc

At about week 4 of being home, my mother said see that picture on the wall, it is like my one at home! It was clear that she did not know where she was and we were keeping her at home for our needs. She went in to a nursing home - part funded and started improving, getting back her mobility and eating properly. For 5 years she has been well cared for, we could really count our blessings. (In the past few weeks the care in the home has fallen apart but thats another story)

Can your relative give consent to you having power of attorney., do they have That is one route I wish we had gone down. Wish you well with it all.

 

[Beate]

No, you don't need anything physically wrong with you to warrant a care package. Dementia falls under social care. Diagnosed or not, if a psychiatric nurse and a social worker say she needs 24 hour care in a home the that will be given a lot of weight, as they don't say that lightly.

If she does not hav capacity for herself anymore, then no, you do not have to respect her wishes, as these wishes would most certainly contravene her best interests. No one likes to go into a care home but I'm afraid such earlier "agreements" do not matter once it's clear that such help is needed.

The "say" you have depends on whether you have health and welfare LPA and also whether, if you don't allow her to go into a care home, you can make certain she is safe at home. The council do have duty of care and they need to be satisfied she is safe and looked after.

I have no idea whether she would qualify for CHC funding as this seems to be a bit of a postcode lottery, but you can always ask for her to be assessed for it.

 

[gray]

you do not have to respect her wishes

Its all well and good saying what the law says, but in many instances the law is an ass

Have you ever been in an argument with somebody who is adamant what they want. So much so they get verbally abusive and potentially violent (eyes being to bulge and stare). I have and I have had to back away, from my mother.

What can I do ?

 

[technotronic]

No, you don't need anything physically wrong with you to warrant a care package. Dementia falls under social care. Diagnosed or not, if a psychiatric nurse and a social worker say she needs 24 hour care in a home the that will be given a lot of weight, as they don't say that lightly.

If she does not hav capacity for herself anymore, then no, you do not have to respect her wishes, as these wishes would most certainly contravene her best interests. No one likes to go into a care home but I'm afraid such earlier "agreements" do not matter once it's clear that such help is needed.

The "say" you have depends on whether you have health and welfare LPA and also whether, if you don't allow her to go into a care home, you can make certain she is safe at home. The council do have duty of care and they need to be satisfied she is safe and looked after.

I have no idea whether she would qualify for CHC funding as this seems to be a bit of a postcode lottery, but you can always ask for her to be assessed for it.

I feel it is wrong not to respect the mothers wishes not to go into a home even if she doesn't have capacity.
If care can be given at home as per her wishes then putting her in a care home should not happen. We have a responsibility to look after our loved ones however ill or affected mentally they are and not put them out of sight for others to care for.

 

[technotronic]

My wife had Early Onset Dementia (undiagnosed), and I was asked by a carer that came in to look after, and wash her, and change her, and clothes, and incontinence pants if I would prefer her to have more extended care, and in other words put in a care home. I told them no she is my wife that I love n care about very much n would do what ever it takes or needs doing to look after her at home with me, and which I did till she passed away on 2nd Jan 2018.
She would have died in her own home if carers hadn't overstepped their remit n called paramedics without telling me first as my wife had contracted a chest infection that day, she on being rushed to hospital by paramedics who ignored a DNR notice was given antibiotics to fight the infection in hope of saving her when her body was in shutdown n had been for some days n she was in fact dying but not allowed dignity to die in peace at home.

 

[Amy in the US]

Here is something I read on another dementia support site:

Care needs drive the decision making.

I find that one of the hardest things about dealing with dementia and being the PoA for a person with dementia, is having to make decisions for them. Often it feels there is no right choice. I have had to make decisions for my mother based on keeping her safe, and getting the medical care she needed and that was in her best interests. I think it can be very difficult to make decisions based, not on what someone says they want, or said under different circumstances, or what I would prefer, but instead, what is needed at this moment. I always try to consider what my mother would prefer (when I know, which is not always), and to give her a choice if possible (sadly not usually possible these days), but in the end, it's about the care she needs.

 

[Beate]

I feel it is wrong not to respect the mothers wishes not to go into a home even if she doesn't have capacity.
If care can be given at home as per her wishes then putting her in a care home should not happen. We have a responsibility to look after our loved ones however ill or affected mentally they are and not put them out of sight for others to care for.

That's your personal opinion. However, don't use it to make people feel guilty who cannot cope anymore. There is no legal responsibility for an individual to look after another at home and telling them they have moral responsibility is just wrong. All of us who had to put our loved ones into a care home have only done so after a lot of soul searching and years of care at home, at a moment when their needs became too much for one person to handle. We shouldn't have to apologise for that, and I won't, whatever others might think.

 

[jaymor]

My husband went into a nursing home after 9 weeks in an assessment unit. I had looked after him at home for 7 years and fully expected to carry on caring at home once the assessment unit had sorted his medication etc.

We were called in for a meeting to be told that my husband could not return home his needs were too complex for care at home. Each of the professionals working with my husband were at the meeting including consultant and doctor. We accepted their judgement and my husband went into a nursing home with CHC and funding for 1:1 Care 24 hours a day.

Did I feel guilty about accepting help? No I didn’t, what I did feel guilty about is thinking I could do it on my own. How arrogant was that?

He was in the nursing home for 4 years, had wonderful care, he was not shut away and forgotten and we as a family were allowed to work with the staff to still care for him.

My husband was far from got rid of as I am sure our loved ones on this forum are not. He got the care he deserved from those who are trained to care and I for one was happy for them to be the cavalry who came to my rescue. Between us we could not win the war but we gave it a good go. For 4 years he had great care and it would have been a crime to deny him that.

We all need different care for our loved ones, no two are the same so we can never generalise care that is needed or assume every person in care is not wanted.

 

[LadyA]

I feel it is wrong not to respect the mothers wishes not to go into a home even if she doesn't have capacity.
If care can be given at home as per her wishes then putting her in a care home should not happen. We have a responsibility to look after our loved ones however ill or affected mentally they are and not put them out of sight for others to care for.

In theory, I'm sure all of us would have liked to continue to look after our loved ones at home, @technotronic . My husband had always had a horror of nursing homes, and I had been determined to care for him at home. Reality was, however, that the turn his illness took meant it wasn't possible. He was refusing to eat or drink enough, was aggressive and violent about personal care and having incontinence pads changed, twice making a good attempt at strangling me. And in fact, once in his nursing home, he actually loved it. He loved having uniformed, male carers on hand to help him. He enjoyed his meals in the dining room, which was set up like a fine restaurant, he took his medication like a lamb from the uniformed nurses. He had several sessions with a physiotherapist each week, to try and maintain his mobility. He thrived in there, gained weight, and enjoyed another 11 months, content and happy, and enjoying the company of other residents, company which was sadly lacking at home, because nobody visited anymore. I was able to spend relaxed, peaceful afternoons with him. We regained a quality of relationship that had been missing for a long time, as I struggled to care for him properly at home, with him fighting me every inch because he didn't really know who I was or understand why I was doing these things.
And as for my "responsibility" to look after my loved one, I feel I fulfilled that responsibility much better by making what was a very heartbreaking decision to let him go to a Nursing Home and ensuring that he got good, constant care, was clean, well fed and had his necessary medication regularly than by me struggling on at home, with little sleep, little help, and in constant fear and anxiety, and my husband fading away in front of my eyes from not taking his meds regularly, not eating enough and dehydration, unshaved, unwashed, and not having his pads changed often enough. Caring for someone at home is wonderful, when it's possible. But it isn't always possible, and it's rarely a choice made for the convenience of the carer.

 

[gray]

I hear what is being said. I suppose the guilt of trying to do the right thing, is high on the list.

I have thoughts that my mum is 'trying it on', as when you see what she can do when she thinks nobody is looking is surprising.

For someone who cannot walk and only goes out in a wheelchair, how can she walk nearly half a mile ?

I must try and get my head around it.