Carer for Mum, Alzheimer's (early stage) diagnosis.

[ganymede]

Hi @Fluff bucket, sorry to hear of your Mum's diagnosis. It must be very difficult for your Dad and for you. Sounds like you and I are in quite similar situations, my Dad doesn't have a diagnosis but isn't in good health.

Good luck with the distraction techniques and I hope you manage to persuade your Mum that the meds are worth taking.

 

[Fluff bucket]

with my husband who has vascular, i check before he goes out the door and make sure he has it in a pocket, wallet, bus pass, inhaler and list before he walks out of the door. its a pain but works and make sure he has his phone so he can call.

Hi jennifer1967

Thank you - I made the mistake of just asking her, she said yes to all, and didn't check pockets to show me... only on the way in the car did she then say 'Oh, I forgot....x, y, z...'

 

[Fluff bucket]

Hi @Fluff bucket, sorry to hear of your Mum's diagnosis. It must be very difficult for your Dad and for you. Sounds like you and I are in quite similar situations, my Dad doesn't have a diagnosis but isn't in good health.

Good luck with the distraction techniques and I hope you manage to persuade your Mum that the meds are worth taking.

Hello ganymede

Thank you, we are still getting used to it, and it is very tiring for us all, especially Dad. I really hope you can persuade your Dad to have a check up - when my Dad chased it up himself he was fobbed off with a referral to geriatrics. He decided to have a private consult with what he suspected was his own diagnosis, and he was sadly proved right that he had a terminal, debilitating disease... : ( The positive thing is we are inundated with specialist support for him now he has that diagnosis.

I can see I will need to think on my feet a lot with distractions... she does say she will take meds, but, had a text from the service lead of dementia services, asking again if she would accept referral to the dementia team. Again she refused. I think she is determined to go the denial route, using Dad's diagnosis as the excuse... : (

 

[Sarasa]

I got so far but no further with trying to get a diagnosis for my mum. I managed to get a referral to the memory clinic from the GP and managed to get mum to the memory clinic. She then refused to engage with the nurse so that was a wash out. After several more failed attempts at getting there, while all the while mum's behaviour was becoming more problematic the whole thing was solved when mum had a melt down in the doctor's surgery. I don't think the practice quite believed me when I had told them about mum's mood swings, but after they'd witnessed her screaming and throwing things around they suddenly arranged for a psychiatrist to go and see her at home. Mum was diagnosed with vascular dementia, so no medication that can help as such, but just having the diagnosis made things easier to deal with, as before then I kept on thinking I was rubbing mum up the wrong way and causing a lot of the upsets we were having.
I think this stage is the most tricky. Mum was capable of managing a lot of her life quite well at the time, but her denial that she was having problems and her blaming of various other people for things that she thought had gone wrong was very waring. Mum is now in a care home and has very little capacity. It's very sad, but she seems at peace with herself on the whole.
I agree just distract, and maybe not mention memory clinics etc. Instead try to get as many things in place to support both your parents over the next few months and years.

 

[jennifer1967]

Hi jennifer1967

Thank you - I made the mistake of just asking her, she said yes to all, and didn't check pockets to show me... only on the way in the car did she then say 'Oh, I forgot....x, y, z...'

i have all the things together and make sure he puts them all in his pocket. ive been doing it so long its almost automatic. even other members of the family remember and check. it used to be his inhaler as he has copd, that one is vital

 

[Fluff bucket]

I got so far but no further with trying to get a diagnosis for my mum. I managed to get a referral to the memory clinic from the GP and managed to get mum to the memory clinic. She then refused to engage with the nurse so that was a wash out. After several more failed attempts at getting there, while all the while mum's behaviour was becoming more problematic the whole thing was solved when mum had a melt down in the doctor's surgery. I don't think the practice quite believed me when I had told them about mum's mood swings, but after they'd witnessed her screaming and throwing things around they suddenly arranged for a psychiatrist to go and see her at home. Mum was diagnosed with vascular dementia, so no medication that can help as such, but just having the diagnosis made things easier to deal with, as before then I kept on thinking I was rubbing mum up the wrong way and causing a lot of the upsets we were having.
I think this stage is the most tricky. Mum was capable of managing a lot of her life quite well at the time, but her denial that she was having problems and her blaming of various other people for things that she thought had gone wrong was very waring. Mum is now in a care home and has very little capacity. It's very sad, but she seems at peace with herself on the whole.
I agree just distract, and maybe not mention memory clinics etc. Instead try to get as many things in place to support both your parents over the next few months and years.

Hello Sarasa

Thank you for sharing that, it must have been very painful for you, but I am glad you have a resolution for you both now. It must have been traumatic for everyone when she melted down in public but at least it got her the help you both needed.

This is definitely tricky and a sore point for us now, so, not mentioning it to her at the moment. Too much going on with Dad anyway to deal with for now...

 

[Fluff bucket]

i have all the things together and make sure he puts them all in his pocket. ive been doing it so long its almost automatic. even other members of the family remember and check. it used to be his inhaler as he has copd, that one is vital

Thanks jennifer1967

Keep trying to encourage Mum to put everything in the same place, but, she won't accept this... so then we do a search of all the coats and bags she's used (keeps swopping and has many as she is a hoarder) every time we go out. I ended up so tired with Dad's care, I fell into the trap of just asking her, and of course she said she had everything...

 

[Fluff bucket]

Just wanted to ask if anyone knows, apologies if this has been asked before:

What are the implications for Mum if she refuses Dementia Team referral?

Do they simply do nothing? Stop her meds? (as she won't be monitored/followed up presumably?)

Consultant/service lead said they would ring in 3 months though, so, maybe I am over-thinking this.

Would I be best to gently tell her what this might mean, not accepting referral?

Or, as jennifer says, avoid the topic altogether as it is a sore point?

Is there something Mum could wear, which denotes early Alzheimer's/capacity even if this isn't mentioned on any interactions? Might not be that useful given the amount of coats/bags she swops around...

Guess I am just feeling powerless and an urge to help her, when, really there probably isn't anything we can do... : (

 

[canary]

If your mum refuses the memory clinic referral they will simply do nothing.
I dont know what would happen about your mums meds. Mum got prescribed donepezil by the memory clinic, but after that she was discharged back to her GP and the GP continued prescribing them.

I wouldnt try and discuss it with her - however gently - as in her own mind she probably thinks that there is absolutely nothing wrong with her, so trying to explain will probably just annoy her.

 

[Fluff bucket]

If your mum refuses the memory clinic referral they will simply do nothing.
I dont know what would happen about your mums meds. Mum got prescribed donepezil by the memory clinic, but after that she was discharged back to her GP and the GP continued prescribing them.

I wouldnt try and discuss it with her - however gently - as in her own mind she probably thinks that there is absolutely nothing wrong with her, so trying to explain will probably just annoy her.

Thanks canary : )

I actually asked the consultant, and he said that the meds will continue so no problem on that, she's on donepezil from yesterday, which she is willingly taking (despite protesting there is nothing wrong with her?). He also said they would ring in 3 months, and she would be referred back to GP, in case anyone else wonders how it works...

Just going to drop the subject for now. We really have our hands full with Dad's symptoms worsening much more quickly than we thought. It just feels like I am letting her down, and her needs aren't being addressed properly, although I think she is quite happy the focus isn't on her....

She had another meltdown about something not being amongst the boxes of returned stuff, that she was going to ring the 'top man' not the contact we have with the specialist cleaners/restorers. Didn't want to do anything but rant and rave, wouldn't calm down. Distraction didn't work.

In the end, I rang to ask about it - not feeling very hopeful that it hadn't already gone, and the chap there found out that it hasn't yet been disposed of (although irretrievably damaged) so it is going to come back. Along with a load more stuff that's restored. She still said it wasn't damaged, it was fine, and she shouldn't have let it go to them. And a lot more things besides.... sigh...

 

[canary]

Im sorry about the meltdown. Im afraid the whole scenario goes with dementia. Your mum is probably remembering the damaged stuff as it once was, not as it is now.

If you get this sort of thing again a little tip is pretend to phone the people (just talk into into the phone) and tell her they are sorry and will sort it out. They wont, of course, but she might forget by then.

 

[Millwill]

So sorry that yet another family is having to deal with this horrid disease. This site seems to offer a lot of support and information, but a bit of advise from someone who has been dealing with a family member for 13 years. Do not avoid sorting out their financial affairs, make sure you get an will and LPA sorted and even a living will, for when the last stage comes you'll find that the relentless machine we call the health service will take over and you'll end up with absolutely no say in what happens to your loved one.
And whatever you do , DO NOT feel guilty about anything, look after yourself both emotionally and physically because it's going to be hell of bumpy ride. Remember you're not alone.

 

[Fluff bucket]

Im sorry about the meltdown. Im afraid the whole scenario goes with dementia. Your mum is probably remembering the damaged stuff as it once was, not as it is now.

If you get this sort of thing again a little tip is pretend to phone the people (just talk into into the phone) and tell her they are sorry and will sort it out. They wont, of course, but she might forget by then.

@canary
Thank you. I am starting to realise this. She fixates on something and cannot let it go. Dad being of a logical personality always tries and fails to explain things to her. Which ends in her getting louder and more argumentative. Definitely need to advise him on this...

 

[Fluff bucket]

So sorry that yet another family is having to deal with this horrid disease. This site seems to offer a lot of support and information, but a bit of advise from someone who has been dealing with a family member for 13 years. Do not avoid sorting out their financial affairs, make sure you get an will and LPA sorted and even a living will, for when the last stage comes you'll find that the relentless machine we call the health service will take over and you'll end up with absolutely no say in what happens to your loved one.
And whatever you do , DO NOT feel guilty about anything, look after yourself both emotionally and physically because it's going to be hell of bumpy ride. Remember you're not alone.

@Millwill

Thank you, we had all had a family meeting when Dad was diagnosed with his terminal illness, and LPOA was agreed on, solicitor has drawn these up, and these are signed, but needed that reminder as we now need to check when these need registering for them both... even the wills are sorted. I am thankful my father is logical and methodical and had no qualms about the need for this.

Guilt is the hard one. If I am not there helping, I am thinking about what next needs doing, and not unwinding...

 

[Fluff bucket]

Poor Mum. Went round today, both parents exhausted, Mum asleep on settee as Dad had a really bad night. I was sorting stuff out for them and Dad, when she woke, and she was immediately tearful. She keeps focusing on the fact my brother shouts at her (she's deaf and won't wear hearing aids) but he is also very impatient and harsh on her (hoarding caused Dad to fall - he's ok but bruised). Unfortunately that just makes her very angry, possibly also a bit of sheepishness too, as there is so much stuff its a trip hazard nightmare.

Just tried to comfort her, but, when she is like this, her thoughts are like a hamster in a wheel, just going round and round endlessly. Tried distraction, calm discussion of e.g. ordering more incontinence products today to make sure she has enough, chasing up delivery company, etc but she kept coming back to it.

Having to face palliative care for Dad tomorrow at the local LOROS so haven't slept much, feeling v tired and bleary... now need to force myself to eat something here, and check on the dog....yawn....

Need to talk to brother and get him to calm down. He wants to ride in, full of enthusiasm and ideas, so help Dad, which is great, but unfortunately fighting with Mum is creating terrible tension. I am worried that the bit of help I am getting with him will disappear if she kicks him out (or worse, she is threatening to hit him).... : (

 

[Ursularainbow94]

Mum is in denial with diagnosis of Alzheimer's.The other day she locked herself out of the house.Luckily,my sister had spare keys.

 

[Fluff bucket]

Mum is in denial with diagnosis of Alzheimer's.The other day she locked herself out of the house.Luckily,my sister had spare keys.

Sorry to read you are going through a similar thing, Ursularainbow94, thank goodness you had the spares...

 

[Fluff bucket]

Hey all...

Anyway. Yesterday was exhausting. Had phone call from Mum night before asking me to take her to the local supermarket, I agreed of course, but said after I take Dad to LOROS for his palliative care consult. She had completely forgotten...

Got back from there, after an intense and draining talk with medics, where poor Dad basically is accepting his rapid deterioration, and next steps... Mum didn't seem to take this in. She focused instead on not wanting my brother to come back.

Took her shopping and she forgot her PIN but when I stepped in, she snapped at me 'How do you know that?' when they had asked me to remember it...

 

[Fluff bucket]

Still can't get Mum and brother to see eye to eye, going to go round again to talk things over, i realised when Dad was discussing a problem, e.g. can't get his socks on, brother jumped in to do it, ignoring Mum who was saying she did this for him... I think I see the problem. She can still do things for Dad, but, brother is pre-empting her, and not listening to her. Hence her feeling left out and not needed... then the tears and frustration. Poor Mum... I think she desperately needs to be heard.

I get that all he wants to do is help, solve everything for them, but she is still there, still needing to help too. We need to sit down and all get our heads together on this....

 

[lemonbalm]

Hello @Fluff bucket

I am sure people with dementia (and people with many other conditions) get very frustrated when they are told what to do all the time and people don't let them do anything for themselves. They are often treated like small children.

Your brother is no doubt jumping in for the best reasons, trying to protect your mum and dad and be as helpful as he can but, if you are able to gently persuade him to let your mum do things that she is still able to do, it would hopefully help to keep the peace. It seems that you are the diplomat of the family.