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Advice

Cez

New member
Oct 15, 2020
5
Hi, I'm Cez and very new to this.
I'm primary carer to my mum who had Dementia & Terminal cancer. I would welcome any advice anyone may have to offer on this terrible journey.
 

MartinWL

Registered User
Jun 12, 2020
422
Hi @Cez, welcome. You will get plenty of advice here. You will find you get a better response if you describe any particular problem you are having as there is sure to be someone who has been there before and got the t-,shirt.
 

karaokePete

Registered User
Jul 23, 2017
5,655
N Ireland
Hello @Cez you are welcome here and I hope you find the forum to be a friendly and supportive place.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
 

lemonbalm

Registered User
May 21, 2018
891
Hello @Cez . Welcome from me too. That's a lot to deal with. Do you have any support from family members or anyone outside the family? Tell us a little more about yourself and your mum when you can and we'll try to help you along.
 

Cez

New member
Oct 15, 2020
5
Thank you for your response folks.
Yes, other family members are on board, sharing the care of our mother. We also have Community Recourses on board, including palliative care..as mum has terminal cancer as well as dementia...all very supportive.
My concern as mums' primary carer and POA of health & welfare is, when do we have to resort to medication to manage mum's worsening dementia? Unfortunately there is a slight conflict between a member of family & myself, as to when to introduce these meds. I feel we should hold off as long as we can & continue with ditraction & reassurance tactics, but said family member thinks mum should be on meds. Mum has kidney failure and does not tolerate medication very well....it would mean a trial & error process, which I am sure mum isn't well enough to tolerate.
Although mums' dementia is advanced, she still sleeps through the night, doesn't wander, eats reasonably well and still knows her immediate family.
Any advice please??
 

MartinWL

Registered User
Jun 12, 2020
422
You need to start by asking her doctor if there is any medication that would do anything useful. If not, there's no decision to be made. It is really more a decision for her doctor rather than for the family. If the doctor suggests alternatives then the family should consider those.
 

Cez

New member
Oct 15, 2020
5
Thank Martin w.
At present we are treating mum conservatively, which were her wishes when she set up POA. Asking me, as her eldest daughter to carry out her wishes of not wanting " to be messed about," her own words. Mum cannot tolerate many meds that have been introduced to manage her dementia, making her quite unwell because of her underlying illness.
I feel it's my duty as her trusted carer to do what is right for our mother. My concern is how far is " not messing my mother about" should go. Because essentially mum's time is limited.
 

Helly68

Registered User
Mar 12, 2018
749
Through Mummy's care home, I met with a Community Matron to discuss care pathways and found them very helpful indeed. It is a difficult time to get hold of people, but may be worth a try.
They were really helpful and supportive when I had to discuss end of life care decisions, always really hard. Mummy did not want to go into hospital and have lots of invasive treatment, unless this was recommended by doctors or inevitable - i.e. a broken leg.
She was able to stay in her care home and be cared for by staff who knew her well, which I felt was better than going into hospital or having treatments which were unlikely to be successful. Every person and situation is individual, if you can get clinician advice, possibly Admiral or MacMillan nurses, they may also be able to help.
 

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