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[Zippy483]

Good afternoon all

I am the main carer for my mother who was diagnosed with mixed dementia (Alzheimer's and Vascular) about 2 years ago, a diagnosis she refuses to accept or and I know this is probably taboo - can't recall having been given.

She is massively and fiercely independent (sadly that is getting in the way of her wellbeing) something I actually want to encourage but also keep her safe, but it seems I'm just an interfering busy body

I'm in a bit of a quandary as since diagnosis by the local memory clinic she's had absolutely no follow up and her GP seems less than interested - the dreaded COVID new ways of working i guess - phone calls for a person with memory issues such as mums are next to pointless

Any way I'm hoping in a similar vein to @AllisonW that maybe there may be some pointers here as to how to get mum the help that she needs and more importantly in some respects persuade mum that she actually does need that help

by the Way if you haven't seen the tissue thread I can well understand what those people are going through

 

[SeaSwallow]

Hello @Zippy483 and welcome to the Dementia Support Forum. I am sorry to read about your mum's diagnosis and that she is reluctant to accept it. Unfortunately that is quite often the case. As regards to the Memory Clinic they rarely do follow up visits and many of our members find it difficult to get help from their GPs.
You could contact your local adult social services to request a needs assessment for your mum and a carers assessment for yourself. The sooner that you do this the better as the system is quite stretched at present.
I would also suggest that your mum applies for attendance allowance, the form is quite complicated so it is best to get help from your local AgeUK or CAB when completing the form. This can be used to pay for the likes of cleaners, gardeners or anything else that your mum might need.
If you have not already done so i would also suggest you get POA for finance and health provided your mum has the capacity to understand and sign the forms.
I hope that this helps a little but keep posting here and let us know how you get on.

 

[Zippy483]

@SeaSwallow Thank you very much for your reply and advice and perversely it does help a little that what provision she is getting is probably as much as she can expect, i thought i was letting her down but having read some of the other forum posts it seems her "treatment" is fairly typical

She is in touch with adult social services and to be fair they have provided a carer in the morning to prompt her to take her medication (she's and insulin dependent diabetic too) but prompt is all she will accept and that grudgingly

LPA both financial and wellbeing are in place thankfully she agreed to that "just in case" , but has been rejected for Attendance allowance on the basis that she doesn't need constant care either during the day or overnight, I'll contact the CAB/AgeConcern for some further advice.

thank you once again

 

[SeaSwallow]

@SeaSwallow Thank you very much for your reply and advice and perversely it does help a little that what provision she is getting is probably as much as she can expect, i thought i was letting her down but having read some of the other forum posts it seems her "treatment" is fairly typical

She is in touch with adult social services and to be fair they have provided a carer in the morning to prompt her to take her medication (she's and insulin dependent diabetic too) but prompt is all she will accept and that grudgingly

LPA both financial and wellbeing are in place thankfully she agreed to that "just in case" , but has been rejected for Attendance allowance on the basis that she doesn't need constant care either during the day or overnight, I'll contact the CAB/AgeConcern for some further advice.

thank you once again

Definitely contact CAB or AgeUK regarding the AA, it is very easy to underestimate the amount of care needed, they are well versed in the 'buzz' words to use.

 

[vas]

After a scan to check on a presumed stroke I was told verbally by a visitor from the old folks mental heath office that I had Altzhiemers and vascular dementia. I had no consultant letter or appointment. This year I was told I didn't have Altzhiemers. I asked for a letter with the diagnosis. This week during a telecon with the consultant I was informed I a had Altzhiemers together with vascular dementia. I was also told Altzhiemers could only be confirmed with a brain biopsy which could only happen when the patient is dead.
It was a most unpleasant phone call.
I think the way both patients and carers are treated is disgraceful.

 

[SeaSwallow]

After a scan to check on a presumed stroke I was told verbally by a visitor from the old folks mental heath office that I had Altzhiemers and vascular dementia. I had no consultant letter or appointment. This year I was told I didn't have Altzhiemers. I asked for a letter with the diagnosis. This week during a telecon with the consultant I was informed I a had Altzhiemers together with vascular dementia. I was also told Altzhiemers could only be confirmed with a brain biopsy which could only happen when the patient is dead.
It was a most unpleasant phone call.
I think the way both patients and carers are treated is disgraceful.

Oh dear @vas , that must have been so distressing for you, the person was certainly lacking in empathy. I wonder if it would help you to start a regular thread in the - I have dementia - area. A number of our members who have a diagnosis post there. i have attached a link below.

I have dementia

This forum is for people who have been diagnosed with dementia.

forum.alzheimers.org.uk