Brain cancer and mixed dementia

Good evening.  I have just joined the form.  
My father (who would have been 101 this year!) died from prostate cancer in 2007.   My husband and I promised him that none of his “girls” would ever go in a care home….(my mum, who passed in 2012 from stomach and liver cancer…I lived with her for a year).  And then I have, who I call my stepmother (she was with my dad for 42 years until his death).  It is complicated, but both women stuck by him!.

anyway, that is a quick synopsis of our story.

we have always known my stepmum and included her in our lives.  She is known as nanna to my blood children.  She moved to around half a mile from our house in 2021.  She started having falls and forgot things were in the microwave and nearly burnt her house down.  Suffice to say my husband and I moved in at Christmas 2021 to care for her.  She was diagnosed with mixed dementia in November 2021.  

The cancer on her scalp started as bowens disease and was treated with liquid nitrogen.  After the lockdown, during which time she was unable to see her specialists, and the cancer had developed.  She was transferred to the OFMS department and has had now 3 operations to attempt to remove the cancer.  The last was aborted 2 weeks ago when her consultant and the anaesthetist came to tell me they had stopped as the cancer had eaten through the scalp and was now in the brain.  

She is 88, thinks she is getting better and forgot that she has been discharged from OFMS.  We are very lucky in that we are receiving help from community nurse every 2nd day.  She is nice to their faces, but as soon as they have gone, she says she doesn’t know why they are involved, and I do a better job (even though I am not medically trained, I am not squeamish in the slightest). But, I do not know hope to cope any longer with her attempts to have me get rid of the medical team.  Does anyone have ideas please.

thanks for listening

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  • Hello Bevs60, 

    Thank you for sharing your story - you are so caring moving close to your stepmother in 2021 to look after her after she was diagnosed with mixed dementia. Poor you having to deal with brain cancer and mixed dementia can't be easy and I am so sorry to hear that the last operation was not successful as it was discovered that the cancer was in her brain. It's good you have the help and support of the community nurse even though your stepmother is not so keen on their involvement but you certainly cannot do it all alone. It's a difficult situation for you to be in but perhaps you could gently explain to her that you are not medically trained and that it's important to have the help and support of the medical team whilst reassuring her that you are very much here for her should she need anything. The fact that she has mixed dementia as well as cancer will require very specialised medical knowledge so it's definitely important as her conditions may progress and require adjustments to keep being in touch and have the visits of the community nurses.

    I hope that you will hear from others on the forum who have been in a similar place before and looked after a loved one with a cancer (and also dementia) diagnosis and they may well have some good suggestions for you based on their personal experiences. If you ever wanted to talk to one of our cancer nurses about this, you can give them a call on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

    You seem to be such a wonderful and caring person and your stepmother is very lucky to have you by her side. Your dad would no doubt have been very grateful for everything you do and have done for her over the years. I hope you are not too exhausted by this. We have some nice guidance for Famiy, Friends and Caregivers which includes a section as well on making sure you take time to take care of yourself during this emotionally and physically intense period. 

    Best wishes, 

    Lucie, Cancer Chat Moderator