Alzheimers Diagnosis for my mum - need some info about what happens next

[suecee]

Hi,

I want to preface this post by saying I am very aware of the strain that covid is putting on the NHS & other agencies.

I posted a few of months ago that my mum had been taken into hospital & they had put on her notes that she had undiagnosed dementia.

She went into hospital on the 26/10. She was moved briefly to a rehab unit but due to covid had to be moved to a care home as the hospital beds were needed.

Very little has happened since then but a few weeks ago a mental health consultant briefly saw her. She had severe anxiety so he could not give a diagnosis. Now the anxiety is under control & he has now diagnosed alzheimers - she is 74.

I am not disagreeing with the diagnosis (there have been problems for a while). I do have a couple of concerns though so wondering want the normal procedure would have been pre-covid & whether my mum/the families treatment is reasonable.

So the MHC saw her once briefly & has not spoken to the family at all. The care home (who have been great) provided the MHC with her history with them.

The home told me & my stepdad the diagnosis and we presume my mum has not been told. The MHC has not contacted my stepdad to explain the diagnosis & tell him what happens next & what stage my mum is at. My stepdad is in denial & also confused & needs someone to spell it out for him.

The social worker has spoken to my stepdad once & seen my mum twice. She has talked to my mum & stepdad about finances although my mum's care has been free until now as she should have been in a rehab unit.

My stepdad is not a pushy man & I am being cautious not to step on his toes but I do chase people sometimes when I feel things aren't progressing.

Even with covid I feel the doctors & social services have been pretty lax but I maybe wrong.

If anyone has any pointers or advice I'd be most grateful. And any idea what we should expect in terms of treatment/help/social workers would be great.

Tia

[Gryff]

Tia

Does any one have Welfare and financial power of Atorney
If no one does you are facing an up hill battle they may discuss her welfare and financial care withnyour stepdad unless you are named as next of kin not him
But if he chooses not to discuss anything with you the care home medical staff social work can't
It's a nightmare both from family's point of view and everyone involved in care of your mum
I can't stress enough no matter how old you are have something in place and I mean even if your are just new parents have your affairs in order

[suecee]

Originally Posted by Gryff

Tia

Does any one have Welfare and financial power of Atorney
If no one does you are facing an up hill battle they may discuss her welfare and financial care withnyour stepdad unless you are named as next of kin not him
But if he chooses not to discuss anything with you the care home medical staff social work can't
It's a nightmare both from family's point of view and everyone involved in care of your mum
I can't stress enough no matter how old you are have something in place and I mean even if your are just new parents have your affairs in order

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Sadly no power of attorney- I tried to get them to do it when me & hubby did ours but no joy.

The home are giving info to me & my stepdad has agreed to this. My stepdad is discussing things with me but he's struggling to understand & accept things. He gets frustrated that very little happens but then says he doesn't want to be a trouble maker (by asking doctors & SW to speak with him). I find it hard to believe that the doctors & SW aren't in regular contact with him.

[Crackerx]

Hi sorry to hear about your mum my mother in law was very ill Christmas 2019 with a bad infection they said it was a chest infection antibiotics didn’t seem to work she was ill for quite a few weeks but was never hospitalised to our surprise. It around this time she just suddenly forgot how to wash herself go to the toilet etc it was honestly almost overnight, she never properly recovered and the last 3-4 months she has got worse we were told she has advanced Alzheimer’s which was a shock, but we are getting frustrated with the lack of help they just keep telling us to try different tablets/doses etc but they don’t really work she has such mood swings we also think she has depression and gets very frustrated. We are doing our best but it’s hard seeing her like that and just want the best help available for her. My father in law is also the same keeps thinking she is going to get better keeps refusing to sort finances etc and was told he should as if something happens to him things could get very complicated Hope you get some answers

[mrs rcch]

There’s not a great deal the doctors and SW can do with Alzheimer’s, my late father was just left to his own devices. We managed to get him into day care to give my mum a break, apart from that, he had nothing.
My late MIL, had frontal lobe dementia, she was in a care home, they looked after her very well, prior to going into the home, she attended a weekly session at the memory clinic, for 10 weeks. Apart from that, just whatever medication the doctor prescribed.

The Alzheimer’s association website and their forum is amazing, have a look around that, it’ll give you some great information and advice.

I send you and your family my very best wishes

[disney332]

My heart goes out to you.

From someone who is currently living through this nightmare, I will pass on what I found to be the most profound comment from a good friend.

Just remember the person you are looking at might share the physical features of the person you once knew, but there is now a different occupant to that body. Please don’t try to understand the actions that happen or comments that come out of their mouth.

You will cope if you come to terms with this.

Best wishes

Disney332

[lensgirl]

Definitely go onto the alzheimers society forum, they are a huge help both practically and mentally. My nans process started last January and we got the diagnosis in May. I had a lot of contact with both her doctors and the mental health team throughout the process as I am her next of kin. Luckily we got power of attorney sorted right at the beginning, although even during that process there were issues where she didn't remember doing it and when the paperwork came through she lost the plot because she had forgotten and thought I was trying to take her house from her!

She was put on medication but didn't really take it or remember why she needed to, so the consultant stopped prescribing it.

You need to remember that the things they feel and believe are real to them and I have learned to not argue with her about things that I know are false. It also makes it extremely difficult to know what is true when she says things that I don't know.

Unfortunately it's a big learning curve and because there is no straightforward way the disease goes, its impossible to guess what will happen next. Sometimes she is in the mild stage and sometimes she is more advanced.

Good luck with it, it can be soul destroying to watch someone you love disappear before your eyes

[Princess Ariel]

I work on an older adult dementia unit. I’m a mental health nurse so hope I can offer some advice.
The consultant should have contacted your stepdad to discuss the diagnosis, this is best practice. They should also discuss medication options as many dementia patients are prescribed medications to help them sleep and settle their mood, usually on an as and when needed basis. There are other dementia specific medications also available.
The social worker should then contact your stepdad (and you if consent is given) to discuss the plan moving forward, much of this will depend on how far her Alzheimer’s has progressed and how she is presenting. Options could include, going home with family support, going home with a care package (carer visits each day) or remaining in a care home facility.
If your mum has ever been placed on a section 3 of the MHA she will be entitled to section 117 aftercare funding, if not then the social worker should be discussing how a care package will be funded.
I agree with the above comments, even though your mum may look the same she is a different person now to the one you knew, accept that what she is thinking and feeling is real to her, I always try and agree with my patients as much as possible as this seems to cause the least distress.
It will be a hard road and it’s so important you have a team of professionals that you can trust and rely on, the hardest thing about dementia (in my opinion) is watching families slowly lose a person they knew and loved, however I love my job so much and feel so privileged to care and see the best in people even when they are succumbing to this awful disease. They are still happy and joyful moments to come, believe me. Sending you lots of love, please DM me if you need any more specific advice xx

[disney332]

Originally Posted by Princess Ariel

I work on an older adult dementia unit. I’m a mental health nurse so hope I can offer some advice.
The consultant should have contacted your stepdad to discuss the diagnosis, this is best practice. They should also discuss medication options as many dementia patients are prescribed medications to help them sleep and settle their mood, usually on an as and when needed basis. There are other dementia specific medications also available.
The social worker should then contact your stepdad (and you if consent is given) to discuss the plan moving forward, much of this will depend on how far her Alzheimer’s has progressed and how she is presenting. Options could include, going home with family support, going home with a care package (carer visits each day) or remaining in a care home facility.
If your mum has ever been placed on a section 3 of the MHA she will be entitled to section 117 aftercare funding, if not then the social worker should be discussing how a care package will be funded.
I agree with the above comments, even though your mum may look the same she is a different person now to the one you knew, accept that what she is thinking and feeling is real to her, I always try and agree with my patients as much as possible as this seems to cause the least distress.
It will be a hard road and it’s so important you have a team of professionals that you can trust and rely on, the hardest thing about dementia (in my opinion) is watching families slowly lose a person they knew and loved, however I love my job so much and feel so privileged to care and see the best in people even when they are succumbing to this awful disease. They are still happy and joyful moments to come, believe me. Sending you lots of love, please DM me if you need any more specific advice xx

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Great post from a dibb expert.

Agreement is indeed the path to a less complicated relationship. Totally.

Disney332

[Mary A]

Age UK were also great at support for us, together with the local carers organisation.

It's a very difficult time, take care