Middle stage dementia and a brain tumour

momac

Registered User
May 5, 2015
2
0
My mum lives with my sister and her husband and her problems began in November 2014, when all of a sudden she couldn't find the bathroom or kitchen. We suspected that mum had a uti and the GP explained that this might be the cause of the confusion, but arranged an appointment at the memory clinic. Shortly after that and out of the blue, mum have difficulty with walking in that she needed to hold on to someone; she was out with me when she fell, she wasn't injured, just dropped like a stone. Admitted to hospital and was there for two weeks; scans showed that there were signs of old 'mini strokes' and that there was a possibility of vascular dementia. Mum was allowed home when the occupational therapist was satisfied that she could walk to the kitchen and make tea! It was eventually confirmed in February 2015 that mum did have vascular dementia. Her dementia seemed to worsen very quickly e.g. she couldn't complete sentences and was unable to sleep at night and had horrific headaches. The GP prescribed co-codomol and arranged a CT scan; but a later MRI scan confirmed that mum has a brain tumour and we have been told that there will be no intervention. She has been getting steroids which give the impression of a miraculous recovery, but will now only receive palliative care and the steroids will be reduced. The consultant spoke to my sister today (over 'phone) and said that the occupational therapist is satisfied that my mum can walk the length of the corridor unaided (with stick) and now wants to see how my mum copes at home, with a view to discharge. The consultant wants my mum discharged from the hospital because she is now 'bed blocking'. In the meantime mum's dementia has worsened and we have been asked several times about her dementia before the tumour diagnosis and after. It has been noted by staff that she seems unable to carry out a simple task and yet as before the OC seems to think that because mum can walk the length of a corridor she can go home. My sister and her husband both work full time and even with a care package in place the toll on them and their health will be enormous. If we could we would pay for a care home ourselves because we feel that she needs more care than we and/or a package can provide and she needs to be somewhere there is something going on around her even if she doesn't take part, but like many we do not have the resources. P.S. The consultant will not give us a prognosis but we do know that the tumour will start grow again once steriods are reduced.
Apologies for the length of this but we are exasperated that no-one wants to hear what we have to say.
M
 

kaycee30

Registered User
Feb 4, 2015
20
0
Hi,
if you dont agree about the discharge back home, ask for a best interests meeting. this will involve all the care professionals and family members.
Depending on time scales, and capacity (if no one holds powrr of attorney for welfare) you can apply to become someone’s deputy if they ‘lack mental capacity’ - They may still be able to make decisions for themselves at certain times.
As a deputy, you’ll be authorised by the Court of Protection to make decisions on their behalf.
There are 2 types of deputy:
property and financial affairs, eg paying bills, organising a pension
personal welfare, eg making decisions about medical treatment and how someone is looked after. Its a lengthy process and there are charges involved.
Alternatively, have her home and if famiky members are unable to cope, as you suggest, call SS back in for reassessment and stress family in crisis/ unable to cope.
best wishes
 

Linbrusco

Registered User
Mar 4, 2013
1,694
0
Auckland...... New Zealand
Oh my. I really feel for your mother and you all :(
My mother has Alzheimers, and my husband is 11 yrs from a brain tumour diagnosis.
He has had 2 brain resections, radiation & chemotherapy.

I will say, that it will be very hard to know if her symptoms are dementia caused or brain tumour caused as both can cause the same.
It is highly likley that your Mum will be on a steroid called Dexamethasone for brain swelling, and Yes it can alleviate many brain tumour caused symptoms.
In my experience though, it is not usually a steroid that is meant for long term use, and generally the dose is reduced gradually, so that the smallest dose possible alleviates majority of symptoms. The real risk apart from Neurological symptoms is the risk of seizures. A brain tumour can grow despite being on steroids.
Given all your Mums health needs and her current situation living with your sister, I would feel it neccessary to have constant care. ((Hugs))
 

momac

Registered User
May 5, 2015
2
0
to kaycee30 and linbrusco

Thank you for your replies. Our battle will be with the SS and my sister and I are preparing to do battle. We have asked to be included in the case conference although no date yet. A colleague warned me that those with dementia are very good at hiding it, a nurse at the memory clinic said the same thing and we found that hard to believe, we now know that to be true. If a 'face' that mum doesn't recognise speaks to her she nods and smiles and answers yes to all questions and I'm sure that's all the consultant sees. She looks at charts showing blood pressure etc and not the whole person; only the carers know the true situation. The SS will explain that they can put a suitable care plan in place and I think our argument will have to centre around mum's night time activities i.e. she gets up several times in the night and doesn't go back to bed, she wanders around and tidies up. Anyone who has had a child will know of the exhaustion following sleepless nights but know that it's temporary; in mum's case it is part of her dementia and will continue. My sister is exhausted and feels guilty about it; if she could afford to give up her job she would, but there are few who can do that these days. We have been wondering is she has had a brain tumour all along, but have been assured that there was nothing on her scans last year. Keep your fingers crossed.
M
QUOTE=kaycee30;1096713]Hi,
if you dont agree about the discharge back home, ask for a best interests meeting. this will involve all the care professionals and family members.
Depending on time scales, and capacity (if no one holds powrr of attorney for welfare) you can apply to become someone’s deputy if they ‘lack mental capacity’ - They may still be able to make decisions for themselves at certain times.
As a deputy, you’ll be authorised by the Court of Protection to make decisions on their behalf.
There are 2 types of deputy:
property and financial affairs, eg paying bills, organising a pension
personal welfare, eg making decisions about medical treatment and how someone is looked after. Its a lengthy process and there are charges involved.
Alternatively, have her home and if famiky members are unable to cope, as you suggest, call SS back in for reassessment and stress family in crisis/ unable to cope.
best wishes [/QUOTE]
 

AlsoConfused

Registered User
Sep 17, 2010
1,952
0
Looking at what you say, the only practical option would seem to be a Nursing Home. I really don't think it's realistic or fair for your sister and her husband to try to provide 24 / 7 care, even if your sister was able to give up her job.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Thank you for your replies. Our battle will be with the SS and my sister and I are preparing to do battle. We have asked to be included in the case conference although no date yet. A colleague warned me that those with dementia are very good at hiding it, a nurse at the memory clinic said the same thing and we found that hard to believe, we now know that to be true. If a 'face' that mum doesn't recognise speaks to her she nods and smiles and answers yes to all questions and I'm sure that's all the consultant sees. She looks at charts showing blood pressure etc and not the whole person; only the carers know the true situation. The SS will explain that they can put a suitable care plan in place and I think our argument will have to centre around mum's night time activities i.e. she gets up several times in the night and doesn't go back to bed, she wanders around and tidies up. Anyone who has had a child will know of the exhaustion following sleepless nights but know that it's temporary; in mum's case it is part of her dementia and will continue. My sister is exhausted and feels guilty about it; if she could afford to give up her job she would, but there are few who can do that these days. We have been wondering is she has had a brain tumour all along, but have been assured that there was nothing on her scans last year. Keep your fingers crossed.
M

Responding to the part in bold - I think you are right. It was mums nighttime activities that was the deciding factor in her going into a care home. Just keep pushing your case.
Good luck
 

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