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Vascular dementia and Oxygen user with diabetes

JanJaz

Registered User
Jul 9, 2019
17
Hello, I'm an only child caring for my mother as much as I can while working full time. My mum is wheelchair bound and uses oxygen 24/7 for pulmonary lung disease and injects insulin for her diabetes. She has had multiple mini-strokes in the last 6 years and a week ago was diagnosed with vascular dementia. All the memory issues and confusion were put down to needing her O2 levels increasing but it turns out not to be the case. My mum keeps forgetting to wear her O2 and removes and packs away the nasal cannula. Obviously this oxygen starvation is even more damaging to her brain. She seems to have gotten much worse very quickly in the last 6 months and now although she sounds very believable, very little of what she says is true. Sometimes she confuses me with a carer and last night she was chatting to my dad on the phone although he died in 2012. Additionally she is undergoing tests for bowl cancer. The dementia doctor said she needs nursing care 24/7 as she is unpredictable (not aggressive) but sometimes is very lucid and other times sounds lucid but is talking of things that have never happened and doing very odd things. All the while she may or may not be wearing her O2. My mum lives alone in a small adapted ground floor flat privately rented and has carers in 4 times a day for 30 minutes each visit to do the essentials. Now I cannot get anyone to increase her care and she has no savings and I have a mortgage to pay. I've been requesting social services do another assessment for 3 months but no-one ever gets back to me. The GP says it's not her responsibility and she has no control over social services. The memory clinic say they'll see her in a year. I don't know how to get her the help she needs as I've tried so many avenues and they're all closed doors. She keeps trying to inject insulin into her finger where it isn't effective. She's confusing it with the glucose test she should be doing. She's adamant this is correct but it's not and it's dangerous. I go to see to her in the evening after work and I have her with me on the weekends and I've used pretty much all my work leave on her specialist appointments. I just don't know what to do. If I call community transport for help with appointments they are full and can't take her on. There seems to be zero support from any agency and nor do they talk to one another. Are there any tips from someone who has walked this path before me?
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,369
Nottinghamshire
Hello @JanJaz welcome to Dementia Talking Point.

I must say I think the attitude of your mum’s GP is unhelpful at best. She may not have any control over social services but she does have a duty of care to her patient. If your mum’s needs are mainly medical would she not need visits from the district nursing team and This would be the responsibility of the GP to organise.

It took me months to get help from Social Services for my dad but I was lucky that he had enough savings to pay for some care while I pursued the matter.

The advice I’ve seen on here is to ask for an “Urgent Assessment” for a “vulnerable adult” for whom they have a “duty of care”. You’ll have to be very very persistent.
 

nitram

Registered User
Apr 6, 2011
20,076
North Manchester
... My mum keeps forgetting to wear her O2 and removes and packs away the nasal cannula....
... The dementia doctor said she needs nursing care 24/7 as she is unpredictable (not aggressive) but sometimes is very lucid and other times sounds lucid but is talking of things that have never happened and doing very odd things...
....She keeps trying to inject insulin into her finger where it isn't effective. She's confusing it with the glucose test she should be doing. She's adamant this is correct but it's not and it's dangerous....
The LA have a legal duty to protect a vulnerable adult at risk of harming themselves and/or others.

Not using the oxygen and incorrect injections I would regard as self harm.
Doing 'odd things' could also be dangerous.

Also CA 2014 makes it clear that neglect , ie not being adequately taken care of, is a safeguarding issue.

Local authorities have new safeguarding duties. They must:
....
● lead a multi-agency local adult safeguarding system that seeks to prevent abuse and neglect and stop it quickly when it happens

● make enquiries, or request others to make them, when they think an adult with care and support needs may be at risk of abuse or neglect and they need to find out what action may be needed

....

https://www.scie.org.uk/care-act-2014/safeguarding-adults/

You could email head of Social Services and also Adult Safeguarding informing them of your concerns.




 

JanJaz

Registered User
Jul 9, 2019
17
I agree, I'm finding all the agencies extremely unhelpful. I am calling SS weekly and have said it is a safeguarding issue because she is a danger to herself. The dementia consultant said that in his letter and said I could send them a copy saying she needs full time care if I wanted. I call SS and they say they will pass on the message to the team for her area but no-one has been allocated yet. The GP asked if I couldn't drop down my work days. This forum is my last hope for advice.
 

nitram

Registered User
Apr 6, 2011
20,076
North Manchester
I am calling SS weekly and have said it is a safeguarding issue because she is a danger to herself.
Don't call, use emails, they provide an audit trail even better than writing 'recorded delivery' as content is known.
If you are using an email client you should be able to request notification that any email has been opened.
If no success with SS and safeguarding move up the foodchain, email the CEO.
 

JanJaz

Registered User
Jul 9, 2019
17
Don't call, use emails, they provide an audit trail even better than writing 'recorded delivery' as content is known.
If you are using an email client you should be able to request notification that any email has been opened.
If no success with SS and safeguarding move up the foodchain, email the CEO.
It would be great to know the correct email address, do you have it? Thanks
 

JanJaz

Registered User
Jul 9, 2019
17
[I, do you have the email address or is it in these links? I'm sorry that I'm dipping in and out as I'm at work. Thanks
 

nitram

Registered User
Apr 6, 2011
20,076
North Manchester
If you let me know the name of the LA I will have a look on their website for contact emails.
Probably best to not tell me in the forum, nor me reply hopefully with some info.
Best way is by conversation (private messaging).
As a 'new member' less than 10 posts you cannot initiate a conversation but you should be able to reply to one.
I will start a conversation with you so you can tell me the LA and I will reply via conversation.
If you don't see an alert on the conversation envelope in the next few minutes post back and I will try and help you sort out conversations.
 
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JanJaz

Registered User
Jul 9, 2019
17
If you let me know the name of the LA I will have a look on their website for contact emails.
Probably best to not tell me in the forum, nor me reply hopefully with some info.
Best way is by conversation (private messaging).
As a 'new member' less than 10 posts you cannot initiate a conversation but you should be able to reply to one.
I will start a conversation with you so you can tell me the LA and I will reply via conversation.
If you don't see an alert on the conversation envelope in the next few minutes post back and I will try and help you sort out conversations.
I have done this now and I thank you. Mum was delusional last night so I was offline till this morning. I will grab a nap because then I have to get her to the hospital for a scheduled scan. I appreciate you going the extra to help me like this.
 

nitram

Registered User
Apr 6, 2011
20,076
North Manchester
Sorry to hear about last night.
I've sent you email addresses for Executive Director for Adult Social Care, Safeguarding Adult Board, and CEO


Be factual and concise in making your concerns very clear.
Best of luc
k
 

JanJaz

Registered User
Jul 9, 2019
17
Sorry to hear about last night.
I've sent you email addresses for Executive Director for Adult Social Care, Safeguarding Adult Board, and CEO


Be factual and concise in making your concerns very clear.
Best of luc
k
Thank you - you've given something I can really work with!
 

JanJaz

Registered User
Jul 9, 2019
17
Thank you - you've given something I can really work with!
Unbelievable, 5 minutes after emailing that address you gave me I got a call back from them and they are escalating the assessment as a result. I really cannot thank you enough, I am in tears of relief. Its the step forward breakthrough I needed.
 

nitram

Registered User
Apr 6, 2011
20,076
North Manchester
5 minutes after emailing that address you gave me I got a call back from them and they are escalating the assessment as a result.
Moving up the food chain usually works.

You say you got a call back, you could keep the audit trail alive by emailing a thank you for prompt response and escalation of the assessment.

Did you get a name as a result of the call?
 

JanJaz

Registered User
Jul 9, 2019
17
Moving up the food chain usually works.

You say you got a call back, you could keep the audit trail alive by emailing a thank you for prompt response and escalation of the assessment.

Did you get a name as a result of the call?
Yes thanks, I got a name and a phone number if I should need to call him again. I also got an email response to keep for my records. Thanks for getting me through the deadlock.
 

Dimpsy

Registered User
Sep 2, 2019
1,366
Wow, from zero to hero, what a brilliant thread to pick up on, team work or should that be TP work!
 

JanJaz

Registered User
Jul 9, 2019
17
Wow, from zero to hero, what a brilliant thread to pick up on, team work or should that be TP work!
Yes, I'm so relived I joined the forum and made that post. The help has support has been amazing!