99 year old mom with cmml

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Margaret54
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Joined: 19 May 2015 15:22
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99 year old mom with cmml

Post by Margaret54 » 26 May 2015 13:21

Hi my name is Margaret and at the moment I am nursing my 99 year old mom who has cmml as well as some vascular dementia. She was first diagnosed some years ago but didn't have any problems until 12 months ago she started loosing loads of weight and sleeping more than being awake. The consultant advised no treatment but to let nature take its course. She is now no more than a skeleton although she eats well is only able to get from her bed to the chair with help and only has the energy to sit for short periods. Apart from the district nurse coming to dress her bed sore I have no support whatsoever and am finding it hard going emotionally and physically. This disease kills you slowly bit by bit. I have no idea how much worse things are likely to get or whether it will be weeks months or......... The only reading from her last blood test was her wbc 92. Does anyone have a similar experience or can any one offer any advice. At least it's been good to write it all down.
sophie
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Joined: 20 Nov 2008 14:05
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Re: 99 year old mom with cmml

Post by sophie » 26 May 2015 15:28

Dear Margaret,
very sorry to hear about your really difficult situation.
If you could give us a call, we'd like to discuss this in more detail and see what else can be done for you and your mother.
As a main carer, you are entitled to assistance, and some respite care.
You should also have been given the name and telephone number of the nurse specialist at the hospital - in case you needed assistance or advice.
Is there a palliative care team at the hospital?
Macmillan nurses are also available over the phone, if none are available at the hospital.
Is the GP any help?

Please ring us on 02077337558.
Look forward to talking to you.
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
janbev
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Joined: 23 Dec 2013 13:18
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Re: 99 year old mom with cmml

Post by janbev » 28 May 2015 18:14

Hi Margaret

Very sorry to hear of your mums problems - Sophie's advise is well worth taking. My sister and I looked after our mum when she had vascular dementia and that on its own is very distressing. My sister found it harder to cope than I did. I had the advantage of a good local mental health team who gave me a lot of advice and information and I would see if your local mental health trust can give you any help. I also found social services very helpful - the social worker they assigned to mum helped us get a lot of medical aids, full care allowances and was also a great support for my sister and I. My own GP surgery is very good and geared up to help with the sort of things you need but my mothers surgery was totally useless and their attitude was 'we are doing you a favour just by being here'. I felt that they really just wanted to say go away and don't bother us when I rang to get a nurse.
I hope you can get some help, do talk to the local macmillan nurses, social services and the mental health trust for your area - you certainly deserve a lot more than you are getting.
One thing I was told with regard to vascular dementia is that you have to learn to treat them with the respect their age deserves while remembering that when they are 'bad' they have the understanding and behaviour of a three year old and its not mum thats talking but a 3 yr old doppleganger.
Best wishes
Janet
Janet N - Husband diagnosed with RCMD July 2013. On watch & wait. Low neutrophils, low white blood cells. At present on 6 monthly hospital check ups
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