[Help] Help with possible dementia

um bongo molongo · Oct 6, 2022

I’m at a bit of a loss so turning to the collective wisdom of NSC in the hope someone can provide some expertise or point me towards some.

My mum is 78 and over the last few years has become increasingly withdrawn. It’s now to the extent that my dad can’t get her to leave the house pretty much, she hasn’t had her haircut in ages, and she’s cut off all social contact, even with closest friends. When her best friend came over, she didn’t recall it, and the friend said she only spoke about stories from her youth (and didn’t talk at all about her two grandchildren, one of whom is only 3 months old). My mum has had a long history of mobility problems, with many operations on her back and hips and has been in pain (part paralysed) for over 45 years. So one possible explanation is that the pain is just too much and she doesn’t want to leave the house. But I think it’s more mental. My gran (her mum) developed Alzheimer’s at about this age, but I remember that seeming very different. And her brother also has severe dementia.

In truth, I don’t really know what to do. As well as her, I’m worried about the impact on my dad, who is a sprightly 83, but is losing all social contact as well as a result. Any thoughts on what to do next would be welcome, but especially keen to hear from any medical professionals or those who’ve experienced similar issues. I live in north London and my parents are in Hove (and I’m an only child) so that doesn’t make anything easier.

Rogero · Oct 6, 2022

Sorry to hear your situation . I know three people with dementia and they all act in different ways . Luckily all three have great partners . Attendance allowance of about £85.00 a week can be claimed and also a rebate on council tax . This may help re getting a hairdresser in etc .

darkwolf666 · Oct 6, 2022

Good luck with the AA form, as unfortunately like all government claims forms they are a ******* to fill out!

Eric the meek · Oct 6, 2022

So sorry to hear your story. My Mum had dementia for several years before she died two years ago.

It sounds like your Mum needs help. The thing I would say, is to act sooner rather than later, so that you have time to do research and make the right decisions, and are not forced to act in desperation mode.

Your Mum will need to be assessed. Everything goes through her GP. Once you have a dementia diagnosis, you can get a care package set up.

If, at a later stage, a place in a dementia home is indicated, then you will want to choose the best one available that is also affordable. My sister and I put Mum in an excellent private home Autumn Lodge, in Rutland Gardens Hove. We both agreed that it was the best choice of the homes we had visited in Brighton and Hove. The council agreed to pay the council standard rate (the rate that they would pay for their own council homes), and we paid a top up out of Mum's pensions. The rules may have changed since then.

Best of luck.

dazzer6666 · Oct 6, 2022

darkwolf666 said:
Good luck with the AA form, as unfortunately like all government claims forms they are a ******* to fill out!

Age UK are fantastic in helping out with these things.

sydney · Oct 6, 2022

um bongo molongo said:
I’m at a bit of a loss so turning to the collective wisdom of NSC in the hope someone can provide some expertise or point me towards some.

My mum is 78 and over the last few years has become increasingly withdrawn. It’s now to the extent that my dad can’t get her to leave the house pretty much, she hasn’t had her haircut in ages, and she’s cut off all social contact, even with closest friends. When her best friend came over, she didn’t recall it, and the friend said she only spoke about stories from her youth (and didn’t talk at all about her two grandchildren, one of whom is only 3 months old). My mum has had a long history of mobility problems, with many operations on her back and hips and has been in pain (part paralysed) for over 45 years. So one possible explanation is that the pain is just too much and she doesn’t want to leave the house. But I think it’s more mental. My gran (her mum) developed Alzheimer’s at about this age, but I remember that seeming very different. And her brother also has severe dementia.

In truth, I don’t really know what to do. As well as her, I’m worried about the impact on my dad, who is a sprightly 83, but is losing all social contact as well as a result. Any thoughts on what to do next would be welcome, but especially keen to hear from any medical professionals or those who’ve experienced similar issues. I live in north London and my parents are in Hove (and I’m an only child) so that doesn’t make anything easier.

it sounds very much like your mum is suffering one of the many forms of dementia , i think your first port of call would be the local council for advice on getting some help for your dad in the form of a carer , hairdresser etc. if your folks are ok financially there are a number of services for people in their/your situation which can be found on google , a mate of mine in Eastbourne is having the same problem with his father only completely reversed as in he wants to go out all the time , he is reasonably fit still so my mate has bought him a watch with GPS in it that he can track , he's walking 7 to 8 miles a day and drinking in numerous pubs around town , he then comes home and causes havoc putting cans of baked beans in the microwave and putting the frying pan on and forgetting it etc .....i can ask him what authorities he is dealing with if you like , good luck with it mate.

LamieRobertson · Oct 7, 2022

Any Power of Attorneys in place for either financial/health?

I’d say first port of call is the GP for an official diagnosis…second, contact these people….I got lots of help when my mother was suffering

https://www.alzheimers.org.uk/

Wish you all the best ..it’s not easy, but it’s your parents so you will naturally do all you can..look after yourself too

pastafarian · Oct 7, 2022

dazzer6666 said:
Age UK are fantastic in helping out with these things.

As are your local Citizens Advice office who will help you fill in the paperwork correctly.
https://www.citizensadvice.org.uk/

pastafarian · Oct 7, 2022

LamieRobertson said:
Any Power of Attorneys in place for either financial/health?

I’d say first port of call is the GP for an official diagnosis…second, contact these people….I got lots of help when my mother was suffering

https://www.alzheimers.org.uk/

Wish you all the best ..it’s not easy, but it’s your parents so you will naturally do all you can..look after yourself too

Its worth noting that if DWP benefits are being considered a relevant person may need to look into being an "appointee" as well as or instead of power of attorney (dependant on what you are looking to do)

https://www.gov.uk/become-appointee-for-someone-claiming-benefits

https://www.citizensadvice.org.uk/family/looking-after-people/managing-affairs-for-someone-else/

JetsetJimbo · Oct 7, 2022

I lost both my parents to dementia in 2017 and 2018, it was devastating. Two pieces of advice from bitter experience: Don't kid yourself that you can somehow pull them back to reality; there's no point correcting them when they remember things incorrectly, it'll only cause arguments and distress. And the other is that you shouldn't be afraid of professional care. My mum was always adamant that she didn't want to be in a home, so I tried to look after her myself the best I could, and she only went into care when I'd completely run out of options and was at the end of my tether. But she turned out to be much happier in that environment because they were able to meet her needs much better than I could.

um bongo molongo · Oct 7, 2022

Thanks everyone, some useful advice there. Sounds like my first step is to work out how to get her to a GP (when she insists there’s nothing wrong…)

Cheeky Monkey · Oct 7, 2022

A referral to a memory clinic via her GP for assessment should be suggested. Frustratingly it took almost 6 months from that first assessment to get appointment two for my dad and him put on medication to slow things, for what the medication is worth (he only started it last week) and we only got that second appointment sorted due to me chasing the memory clinic.

There was some hopeful news last week about a drug producing good results in trials on Alzheimer’s, reducing symptoms by a third I think, although it will probably be years before it potentially gets approval. Selfishly you can’t help worry about it potentially being hereditary, although I don’t think that’s a given.

Good luck ubm. My dad also ‘denies’ anything is wrong and was apoplectic on receiving his diagnosis from the GP via letter (not ideal in any format, but he obviously has no idea of his condition)

dejavuatbtn · Oct 7, 2022

Yes, I remember taking my step dad for diagnosis following a go referral. The assessor started the conversation, hellos Mr W……r, remember me? Turns out he had been there previously with your knowledge. He has two types and we have luckily been able to get him into care by selling his properties.
Dealing with this at home would be difficult but the council do have some specialists for referral.
It is a terrible condition as it progresses. I can only wish you the very best.

jakarta · Oct 7, 2022

JetsetJimbo said:
I lost both my parents to dementia in 2017 and 2018, it was devastating. Two pieces of advice from bitter experience: Don't kid yourself that you can somehow pull them back to reality; there's no point correcting them when they remember things incorrectly, it'll only cause arguments and distress. And the other is that you shouldn't be afraid of professional care. My mum was always adamant that she didn't want to be in a home, so I tried to look after her myself the best I could, and she only went into care when I'd completely run out of options and was at the end of my tether. But she turned out to be much happier in that environment because they were able to meet her needs much better than I could.

All of the above is the correct answer. My Mum has ended up in a Dementia Care Home due to repeatedly falling and then starting to break bones wjhen she was living alone in a Flat.

She is nearly 90 now and drifting away from reality, she got the Home to call me on the day of the Queens Funeral in a state of despair because my Younger Brother had died (he hadn't). When I asked her how she knew she told me my Dad (who IS dead and has been since 1996) had let her know. I got my Brother to call her that evening, I would have been interested to know that conversation!

Apparently she still wobbles out of the Home onto their Patio area to have a cigarette most mornings, I gave up telling her how bad it is for her some years ago but drew the line at actually buying her any. I'm sure we will get a phone call at some point shortly and in a way I hope it is sooner rather than later.

Thunder Bolt · Oct 7, 2022

There may also be an element of depression as well, as you say, she's had a lot of health problems and pain.

I would recommend your Dad look locally for a mobile hairdresser who would come to your home. Many women feel better after having their hair done, and a sign of depression is not feeling good about yourself, which then becomes a vicious circle. Maybe a mobile manicurist as well.

Seagull58 · Oct 7, 2022

I have been through this with my stepmother. At times she was fairly lucid and at other times she was off with the fairies. Dehydration is a problem so get your Dad to make sure she drinks plenty of water. Sometimes, a drink of water results in an obvious improvement in mental faculties within minutes.
Get an Enduring Power of Attorney sorted out for health and finances.
Organise care at home to take the load off your dad and prepare for the day when that is not sufficient and she needs full-time care.

sydney · Oct 7, 2022

JetsetJimbo said:
I lost both my parents to dementia in 2017 and 2018, it was devastating. Two pieces of advice from bitter experience: Don't kid yourself that you can somehow pull them back to reality; there's no point correcting them when they remember things incorrectly, it'll only cause arguments and distress. And the other is that you shouldn't be afraid of professional care. My mum was always adamant that she didn't want to be in a home, so I tried to look after her myself the best I could, and she only went into care when I'd completely run out of options and was at the end of my tether. But she turned out to be much happier in that environment because they were able to meet her needs much better than I could.

yeah ....don't feel bad mate , there's millions out there in the same boat...take care of yourself x

sydney · Oct 7, 2022

Thunder Bolt said:
There may also be an element of depression as well, as you say, she's had a lot of health problems and pain.

I would recommend your Dad look locally for a mobile hairdresser who would come to your home. Many women feel better after having their hair done, and a sign of depression is not feeling good about yourself, which then becomes a vicious circle. Maybe a mobile manicurist as well.

yeah ...a spruce up may bring her back , we thought that , and it does but its just temporary , you cant beat it......its a c%$t , sorry.

JetsetJimbo · Oct 7, 2022

Seagull58 said:
...Dehydration is a problem so get your Dad to make sure she drinks plenty of water. Sometimes, a drink of water results in an obvious improvement in mental faculties within minutes.
...

Ah, that's reminded me of something else. In my mum's case, I had this problem that she wouldn't or couldn't articulate what she needed, and would instead get crabby and hostile. I'd have to ask her "Are you hungry? Are you thirsty? Do you need the toilet?" etcetera in succession until she said "yes" to something, and then sort out whatever the problem was. She wouldn't say unless directly asked, she'd just get cross because (presumably) she could tell that she needed something but couldn't figure out what unless asked directly.

Going for a short walk on as many days as the weather allowed seemed to help keep her spirits up. The days when the weather was too bad for that were usually the worst.

Would also echo what someone else said about a mobile hairdresser/manicurist, but would also add: don't forget the feet. It's difficult to look after them as you get older, more so when dementia is involved. Things like ingrown toenails and fungal infections can really run amok. If you can find someone to give them a once-over on a regular basis, you might be able to avoid getting to the stage where they need medical attention.

BrightonCottager · Oct 7, 2022

I'm also dealing with this with my mum in NW London. There's some good advice in previous answers (inc a recommendation for a care home in Hove which my mum may end up in), but mine would be:
- get an Enduring Power of Attorney for health matters - its not impossible to progress things but it should make it easier
- try to get her to the GP for a regular checkup but get in contact with them beforehand to ask them to do a memory test. This will hopefully lead to a referral to the memory clinic and a proper diagnosis.
- current drugs to slow Alzheimer's only slow the rate of decline and have side effects including sedation (leading to more falls) or affecting bowel movements. My mum is not on them but is on antidepressants which seem to have improved her moods.
- Alzheimers Society have an excellent advice service about tactics and what to expect.
- you have to try not get frustrated with the change in behaviour and suck it up which can be really hard. There are some simple Do's and Don'ts I use: https://www.alzsd.org/dos-and-donts-of-compassionate-communication-dementia/

Hope this helps. Good luck and thanks for posting. There's a lot of us trying to cope with this. NSC at its best (again).

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