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

[MinniMouse]

MIL has dementia, gone downhill since lockdown. Still lives at home with FIL, who is getting quite frail himself. He does all the cooking. We try and get SIL who lives over 2 hours away to do most of the online stuff, house insurance, car insurance, weekly shop etc whilst DH and other SIL and us partners help out as we are closer to them. I take her to the hairdressers weekly then to visit my DS to give FIL a break. SIL pops in several times a week and will take her out for a short walk. There is also a dementia nurse that used to visit, I think once a month, and there's now a social worker (or helper), not quite sure, they come twice a week for an hour each time, gives FIL a wee break. This has stopped during each proper lockdown so not great. FIL does struggle at times, he doesn't have the patience for her. SIL has visited a care home where they have a unit for dementia patients but is adamant she is not going in one yet.

FIL also now gets carers allowance which helps pay for cleaners and a gardener. They were struggling to clean the house and there's only so much we can do as we all work full time.

I think they need respite but during covid it is not posible, in our area anyway.

[suecee]

Originally Posted by 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

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Thanks. I hope things improve for you too. There seems so little help out there & of course it is so much harder at the moment. My mum also had issues with washing & kept repeating the same actions & was completely obsessed with using the toilet. She is now heavily medicated & has thankfully calmed down but it's taken about 3 months for them to sort her anxiety which was off the scale.

[suecee]

Originally Posted by 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

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Thank you, I will check out the Alzheimer’s website. I have looked around before but now we have a diagnosis I can focus on that.

[suecee]

Originally Posted by 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

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Thanks, I really appreciate the comment.

[suecee]

Originally Posted by 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

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Thanks, I am glad you have had so much support, to be honest it just feels like the doctors have forgotten about my mum & it is the care home that have had to fight to get things done. My mum was only put in the care home due to covid as the beds were needed in the hospital.

My stepdad has only has call from people when I have asked them to ring him, he has still not heard from any doctor about her diagnosis. Or at least that is what he is telling me. It's difficult when the next of kin is either not being contacted or perhaps not being honest about what is going on.

It is such a difficult time for all involved and I wish you all the best.

[Midges17]

I feel your pain, my mum was diagnosed with mixed dementia at the beginning of 2020, then lockdown happened & she deteriorated a good bit, I’m in Scotland so procedures will likely be different but I’ve had a terrible job trying to get help, I’m sure some of it is due to COVID but not all, I’ve really had to push to get her some help, she lives on her own, I’m 20 minute drive away & my brother at the other end of the country!
the one thing that has helped greatly is having POA for both financial & medical, the doctors social work etc all phone me with dates, appointments etc as mum would never remember if they phoned her, if you can get POA hopefully that will help.
There is no simple answer I’m afraid as everyone deteriorates at different rates some days my mum seems almost her old self the next she can’t remember what she had for lunch, forgets to eat some days and doesn’t take her medication.
Sorry, not been much help just wanted you to know your not alone.
It really is an awful disease

[suecee]

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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Thanks so much. I think that those dealing with my mum have not been following best practice, maybe it's due to covid? I know it is a really difficult time. At least the home have been great with my mum & so patient as she has been extremely difficult. We do know what medication she is on as the home keep us updated on this.

I did not know about section 3 of the MHA so I am grateful for this, I do know that she is essentially considered to be in hospital even though she isn't.

Thanks again & keep up the good work xx

[suecee]

Originally Posted by 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

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Thanks, I will look into Age UK. I have tried to get my stepdad to join a local carers organisation but I am not sure if he has. He's ex-military & they have a local carers organisation.

[suecee]

Originally Posted by MinniMouse

MIL has dementia, gone downhill since lockdown. Still lives at home with FIL, who is getting quite frail himself. He does all the cooking. We try and get SIL who lives over 2 hours away to do most of the online stuff, house insurance, car insurance, weekly shop etc whilst DH and other SIL and us partners help out as we are closer to them. I take her to the hairdressers weekly then to visit my DS to give FIL a break. SIL pops in several times a week and will take her out for a short walk. There is also a dementia nurse that used to visit, I think once a month, and there's now a social worker (or helper), not quite sure, they come twice a week for an hour each time, gives FIL a wee break. This has stopped during each proper lockdown so not great. FIL does struggle at times, he doesn't have the patience for her. SIL has visited a care home where they have a unit for dementia patients but is adamant she is not going in one yet.

FIL also now gets carers allowance which helps pay for cleaners and a gardener. They were struggling to clean the house and there's only so much we can do as we all work full time.

I think they need respite but during covid it is not posible, in our area anyway.

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Thanks. My stepdad is becoming a little frail & forgetful and I don't think he could manage my mum. We will be able to offer support in a similar way you do if my mum goes home but as she is physically disabled this may not be possible as she will require a lot of care.

I hope that some respite care can be sorted for your MIL as lockdown eases.

[suecee]

Originally Posted by Midges17

I feel your pain, my mum was diagnosed with mixed dementia at the beginning of 2020, then lockdown happened & she deteriorated a good bit, I’m in Scotland so procedures will likely be different but I’ve had a terrible job trying to get help, I’m sure some of it is due to COVID but not all, I’ve really had to push to get her some help, she lives on her own, I’m 20 minute drive away & my brother at the other end of the country!
the one thing that has helped greatly is having POA for both financial & medical, the doctors social work etc all phone me with dates, appointments etc as mum would never remember if they phoned her, if you can get POA hopefully that will help.
There is no simple answer I’m afraid as everyone deteriorates at different rates some days my mum seems almost her old self the next she can’t remember what she had for lunch, forgets to eat some days and doesn’t take her medication.
Sorry, not been much help just wanted you to know your not alone.
It really is an awful disease

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Thanks. It sounds like you're having a difficult time too. The virus has made things so much worse for those & their family with dementia. There is no way it will be possible to get a POA, she refused to get one with her husband 10+ years ago so no hope now. My stepdad can keep the home running anyway so at least there is no worry there. They don't have joint finances but he's always paid for everything so I don't think it'll be an issue.

Take care.