both parents have dementia- I’m waving and drowning.

Beside myself

New member
Aug 2, 2019
1
I live in London, teach part time, help look after my grandson, live with my husband with both my grown up children nearby. My only sister lives in Germany and suffers from mental health issues.
My parents, both 86, live an hour away in Bury St Edmunds. My father has Alzheimer’s and vascular dementia and is also registered blind. His deterioration is palpable, angry, refusing to get dressed, hoarding and hiding keys, locking doors and windows and has lost any ability to put his thought and speech into any logical sense. My mother has Alzheimer’s and is partially deaf( but will not use hearing aids). She is very stoical about her situation, saying they can cope. The reality is, they argue all the time, being unable to understand and manage each other’s needs, I manage all their affairs ( have power of attorney but my father is accusing me of misusing their money), arrange online shopping and visit weekly. Their ability to manage their home and selves is deteriorating rapidly but they refuse the idea of cleaner, extended care etc. A carer goes in for 30 mins a day to check medication has been taken but are ineffective beyond that.
My mum is becoming increasingly depressed, just eating and sleeping, my father more angry, distressed and agitated.
The issues with social care and health means support is vague and feel I am just left to get on with it. Both absolutely refuse respite care, extending carers coming in or entering a home. I am the one that gets the crisis calls from my father, with my mum saying ‘everything is fine ‘whilst holding back the tears. I am drowning ( as well as having weekly therapy, anti depressants, sleeping tablets and going to yoga,,!)
Please help....
 
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nae sporran

Volunteer Host
Oct 29, 2014
6,332
Bristol
Welcome to Talking Point, @Beside myself. Sorry to read of your hardship and the way both your parents having dementia is causing you depression.
The details of how to get a best interests meeting and just how to proceed when both parents refuse help is something beyond my experience, though others on here may be able to advice. The National Dementia Helpline would be a good place to get advice and support in the meantime.
National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm
 

Guzelle

Registered User
Aug 27, 2016
417
Sheffield
Hello @besidemyself would you be able to hire a cleaner and a carer? Don’t give them the choice. If you handle their money you could arrange payment for them. They will complain at first but they might enjoy someone coming in for company. People with dementia often refuse care as they don’t see the problems.
 

Glokta

Registered User
Jul 22, 2019
61
Hi, my mums a bit like this, very low, sleeps a lot, doesn’t want anyone to go in except family, and suspicious when we do go in. Fluctuating capacity, so no help from social services. No longer able to make realistic decisions. The only person (including the memory team) who is of any help is the GP. He’s been great, very supportive, tries really hard to help her, and us, which is more than anyone else has done. I find it’s a vicious circle, SS says call memory team, memory team says call SS, we have no support workers or regular appointments in our area, you only get an appointment with memory services if there’s a crisis. I hope you get something sorted out, for your own sake, this situation destroys your physical and mental health and takes most of the joy from life. I’m sure most PWD would be horrified if they realised not only how they are but what effect their illness is having on those around them too. Take as much care of yourself as you can, although I know it’s difficult.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,471
Document in writing to your Mums GP your concerns & safeguarding issues, copy in SS.

It’s a long battle believe me but having everything documented will help you get the limited help available.

I made a complete nuisance of myself ringing around but emailing got the process moving slowly.
Everyone is worried about Deprivation of Liberty, but magic words are Safeguarding Issues & Duty of care.

Lots of hair pulling ahead I’m afraid, but standing back & letting crisis evolve is the only way you get help as this system stands.
It’s heartbreaking at times but believe me the sooner you step back & let the crisis happen the sooner you find help. Believe me I speak from years of experience & frustration.
Ps
We are still lurching from crisis to crisis & now at least Mms got carers in 4 times a day ( only taken since 2014 when her GP sent her for memory assessment, but still no diagnosis!) & Dad is in CH since November 2018 ( a 2 year nightmare since his diagnosis of Alzheimer’s & VD! With Mum adamant Dad was lazy/stupid/dying!)
Don’t do what I did for years & become the person who enabled all this - by doing my bit, or being a dutiful daughter.
In any other medical situation you’d seek help & answers - with PWD it just takes longer.
 

Glokta

Registered User
Jul 22, 2019
61
I’m so glad I found this forum, because everyone supports you and as a result my Carers stress seems to have reduced. You guys listen and care. You guys know from personal experience. I will take your advice, and start documenting stuff! But I’m so grateful for having your ear.
 

marionq

Registered User
Apr 24, 2013
6,006
Scotland
Today I had to get in touch with the social worker for carers who came to see me at the start of Johns dementia journey. Over the last 7 years I have contacted her 3 or 4 times at most and she has stepped up to
The plate each time. Other sw people keep changing but she stays the same. As before she gave me good advice and better still told me to ring her in a couple of days when she would have more info.

Someone like this to lean on temporarily and who can make waves for you to improve your situation is essential with this illness. To be on your own with both parents with dementia is a horror story.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,471
I have emailed the SW & copied in Mums GP & the care home; asking for a diagnosis as the hospital flagged dementia & still nothing has happened 2 months on.
This action was triggered by a neighbour & friend of mums calling with welfare & safeguarding concerns. I’m convinced poor mum has Lewy Bodies Dementia- she’s a text book case. Just want some answers but keep going in circles continually. If I don’t step away from this situation I’m going to have my third nervous breakdown!!
No 3rd time lucky doesn’t apply !!!
 

TNJJ

Registered User
May 7, 2019
1,044
cornwall
I have emailed the SW & copied in Mums GP & the care home; asking for a diagnosis as the hospital flagged dementia & still nothing has happened 2 months on.
This action was triggered by a neighbour & friend of mums calling with welfare & safeguarding concerns. I’m convinced poor mum has Lewy Bodies Dementia- she’s a text book case. Just want some answers but keep going in circles continually. If I don’t step away from this situation I’m going to have my third nervous breakdown!!
No 3rd time lucky doesn’t apply !!!
It is very difficult when the PWD doesn’t see the problem.It also doesn’t help when SS take the answers from PWD at face value.(See post from SS)Fluctuating capacity and all that .Even with LPOA That isn’t making a difference as he has capacity.Someone must have got the diagnosis..What about the specialist that diagnosed it?Could you get hold of him maybe?
 

DesperateofDevon

Registered User
Jul 7, 2019
2,471
Ah waiting for GP to get her **** in gear & send in request- .............
I have no words......
That are suitable for polite company or conversation........
 

DesperateofDevon

Registered User
Jul 7, 2019
2,471
Hi, my mums a bit like this, very low, sleeps a lot, doesn’t want anyone to go in except family, and suspicious when we do go in. Fluctuating capacity, so no help from social services. No longer able to make realistic decisions. The only person (including the memory team) who is of any help is the GP. He’s been great, very supportive, tries really hard to help her, and us, which is more than anyone else has done. I find it’s a vicious circle, SS says call memory team, memory team says call SS, we have no support workers or regular appointments in our area, you only get an appointment with memory services if there’s a crisis. I hope you get something sorted out, for your own sake, this situation destroys your physical and mental health and takes most of the joy from life. I’m sure most PWD would be horrified if they realised not only how they are but what effect their illness is having on those around them too. Take as much care of yourself as you can, although I know it’s difficult.
Your lovely post made me cry
Thank you
Xxx