Rapid progression Alzheimers

[twotake]

Hi. I’ve never posted here before but feeling fairly desperate! My dad was diagnosed with alzheimers around 6 months ago, he is late 60’s so relatively young. My mum, also late 60’s, is his main carer and is really struggling to cope.

We had suspected a memory issue for 3-4 years but the rate of decline from the start of this year has been staggering. He used to be a high level professional man but is now a mere shadow of his former self. He has lost all confidence and is often very distressed, sobbing frequently. It is very hard to see him like this. There have been numerous incidents over the past few months but the main problem is that he often does not know who my mum is. This, understandably, makes him very anxious and agitated, he tried to escape the house, screams for help in the garden, grabs at the wheel in the car etc . Me or my sister can usually calm him eventually (he knows who we are) but this is taking longer and he is becoming increasingly suspicious of anyone trying to calm him down.
He has been tried on various meds but all abandoned as they seem to make things even worse.
My mum is really struggling, tries her best to keep calm but frequently loses it and cries hysterically saying she can’t cope with it all.

I’m not even sure what my question is really, but is it usual for Alzheimers to progress this quickly??

Also, my dad won’t accept carers coming in. Any idea how I can get some help and support for my mum?

So sorry OP, this sounds really tough.

If your mother will go along with a little white lie, you engage carers and tell your father that the carers are here to help your mother.

Both PIL'S had dementia and we told each of them that the carers were coming in to help the other one.

Has he had a formal needs assessment by social services yet? Again, the social worker is coming in to see if your mother needs any help.

Thank you for replying! Yes, we have tried that tactic but the Alzheimers seems to have robbed him of any empathy and he doesn’t seem to care or understand that my mum needs a break. But perhaps we should try that angle again and maybe say it’s to help with the housework or something.

Is the social services needs assessment something that is done shortly before someone might need to go into a care home? My mum has had the crisis team and mental health teams out numerous times and I’m not sure if this has been suggested yet, she certainly hasn’t mentioned it.

Your DM definitely needs a Carers Assessment abs she needs to be very honest with them about how she's feeling.

They might be able to give your DF some respite care or offer someone to sit with your DF while she goes out for an afternoon.

Saying that the Carer is there to help your DM is a good idea. Some people also employ a local Carer and introduce them as a friend and let them visit until your DF feels more comfortable with them.

Is your DM getting help with things like a gardener, shopping delivered abs a cleaner?

Is your DF sleeping at night or is she being woken many times in the night? If she is, you might want to discuss with her how long she feels she is able to carry on caring for your DF with little sleep

Thank you, some really good ideas there. Will definitely look into the carers assessment.

His sleep is patchy. He has good nights and bad nights, but yes, mum understandably finds it much harder to cope when she’s had very little sleep. And my dad is also much worse on those days.

Is he on any dementia meds?

Has she not had any adult social services assessment? You can refer to adult social services yourself and state your mum is not coping and needs help. You will need to go against your dads wishes on this do your mum can have a break. They get used to careers after a while.

Also there should be dementia guides speaking to your mum about respite, day centres, memory cafes etc

Could you sit with your DF while your DM speaks to an Admiral Nurse? You can call them as well to talk through your concerns.

The Elderly Parents Section on MN can be useful as well. It's usually a bit busier than the Dementia Section.

Is the social services needs assessment something that is done shortly before someone might need to go into a care home?

Sorry, I'm true MN style I didn't answer the actual question @twotake.

No, your DF can have one at any time. SS will be keen for him to stay at hone as that's the cheaper option for them. So no, it's not a straight route to care, they will try to put as many things in place as they can to keep him at home for as long as possible.

Your DM will need to be honest with them though and say that he needs care at night as well as the day and that she's not coping. You may want to be there when they do the assessment.

I just wanted to post a thank you to some of the suggested resources. @PanicBuyingSprouts Facing a similar situation with rapid decline and didn't know what to do.

OP, how are your parents?

Are you getting Attendance Allowance for your dad? It is not means tested and you will be able to get the form to fill in. (Google it) Fill the form in with every little detail about his needs.

Thank you for the advice everyone, it has really helped.

Things have moved on quite a lot since my last post. Dad became increasingly confused, not sleeping at night, wandering, manic and at times aggressive during end of December and beginning of this year. After one particularly difficult and aggressive episode, the crisis team were called out to him again and I spoke directly with his consultant. He was prescribed respiridone (anti-psychotic). Initially this had a miraculous and positive effect, immediately calming him and allowing him to sleep at night. The positive effect lasted about 4 days before the agitation came back, dosage was increased, good again for 4 days before agitation back, dosage increased again etc. Its now three days since his last increase in dosage, so we are all hoping we can find a level which helps with the agitation but still allows him to function. So its ongoing. They were very reluctant to prescribe him these meds, felt like they were waiting for things to become very, very bad before doing so.

I am very grateful for them though and pray they continue to work, otherwise I don’t see how he can be at home. It’s simply not fair on my mum who finds it completely unbearable when he is bad (which I absolutely sympathise with, as he shouts, pushes and constantly tries to escape the house).

He has attendance allowance, which is good and my mum uses it for a carer two mornings a week. He is not happy about the carer though, so a difficult balance.

The risperidone doesn’t stop the confusion btw, (although I think it has reduced it slightly) but has certainly massively helped with the agitation, shouting and general aggression

Not sure if this is an option as my dad hadn't yet been diagnosed with dementia when they assessed (he was early 50s so they hadn't considered it) but due to the resultant behaviour the GP and a psychiatrist came out to assess and section him as he was a danger to himself and others and had previously refused any medical apts. He eventually went from MH unit to care home.
A lot of your dad's behaviour sounds v similar to mine.

I had an interesting conversation with the consultant about how rapidly his Alzheimers is progressing. My Dad was only diagnosed 8 months ago and before that, was functioning almost normally (apart form being forgetful sometimes and a noticeable reduction in social confidence). You probably would not have said there was anything wrong unless you knew him well.

Anyway, she said that for people that are very bright, pragmatic and ‘copers’ they sometimes manage to mask the symptoms of Alzheimers for a long period of time. So, what seems to us a rapid decline, is probably partly explained by my Dad masking his symptoms for a very long time. But the brain then becomes so damaged, it is simply not possible to do this anymore. His CT scan picked up significant shrinkage of the frontal lobe.

I just thought that was an interesting take on it. She also said it is impossible to predict how quickly his Alzheimers will progress.

@passionfruitpizza gosh, early 50’s, that is so so young. I hope you manage to find some medication that could help. Such a distressing thing to witness in a parent.

Both my parents have dementia and it has been a very tough road. They are in a nursing home now but we supported them at home as long as we could with a combination of family and carers.

I found the Contented Dementia Handbook invaluable.

www.amazon.co.uk/gp/product/B003V4ASOA/ref=ppx_yo_dt_b_search_asin_title?psc=1&tag=mumsnetforu03-21&ie=UTF8

Out of interest, are they sure it's definitely Alzheimers? I only ask because a family member has got a different form of dementia (Lewy Body) and it sounds quite similar to that, in terms of the rapid progression, personality change, aggression, early confusion as to the identity of a close relative, disturbed sleep etc. God knows I'm no expert, but I'd read that Alzheimers often tends to be a slower and steadier decline, with more emphasis on memory loss in the earlier stages rather than other symptoms. Not that it probably makes much difference, but I think the meds recommendations can be different. Anyway, a big hug - it's a simply horrible thing to experience/witness. I'm glad the drugs are potentially helping.

Hi @sortitaht - I have read about Lewy Body dementia and have definitely wondered whether that is the right diagnosis for Dad, and not Alzheimers. As you say, he certainly ticks many of the boxes (he also has a fairly pronounced tremor in one hand).

I’m not sure it would make any difference to his treatment plan but yes, think I will ask his medical team about it when I speak to them next.

@twotake thank you. Unfortunately his subtype of dementia (FTD) doesn't respond to medication. His progressed pretty rapidly and the care home was by far the best place as it's secure and safe and routine is beneficial. I hope your family is offered some help that's beneficial. I think someone else has mentioned Alzheimer's society, they were incredibly helpful for my mum with a lot of paperwork and what to say to credit card companies he'd run up debt with and things like that.

My dad is 61 he was diagnosed this time last year now the doctors have said he has advanced Alzheimer's and he is dying -we have been told he has 6 months max to live but could be much less if he gets any kind of infection as they will not treat him and he has a DNR! He knows who we are but has lost the ability to walk due to him not eating or drinking he is now pretty much non verbal and is totally skeletal! I think he knows he's dying and sometimes when he is more lucid he cries which breaks my heart I had never seen him cry before -I have a 6 year old who doesn't really understand why grandad can't play with her anymore as he was really fun grandad and a 1 year old who will never know who is was as he will not be around when she turns 2 if the doctors are correct- he will not see them grow up! It makes me so sad and angry he was a doctor who worked in a really impoverished area and looked after people his whole working life and will have paid thousands in national insurance but won't even get to state pension age and he and my mum don't get to have the retirement they planned- one he worked so hard for so they could have enough to go on all the holidays they missed out on - my youngest sister had just moved out and they had just downsized their house and then this happens!! Life is so unfair!! All the doctors have said they have not seen anyone go dowm hill as fast as this -a year!!! This time last year he was still my happy, clever, caring, loving dad and now he can't even put s sentence together!

I’m so sorry @Mummytotwogirls01 that is absolutely devastating and so young for it to happen too. My Dad gets very down and cries too, which I find really hard as like you, I had never seen him cry before. He asks for his mum (who died years ago) and also cries because he is so scared about why he doesn’t recognise anyone. It’s a hideous, hideous disease.
You’re right, life is very unfair sometimes. Much love to you and your family xx

I really feel your pain, we lost Mum last October after a 6 year struggle with Alzheimer's.

Hers was much slower, the last 6 months were horrendous. Try as we might we could not get her into a care home during this time. No amount of falls, hospital admissions, incontinance, dehydration etc, not for love nor money would the professionals entertain it.

It sounds to me like Lewy body.