Hello
Appreciate any ideas or advice.
My Mum developed a PCNS lymphoma on the brain - maybe due to a weakened immune system from chemo (this is untreatable)
Chemo also caused bad hearing loss, nerve damage in her ears.
She had leukemia in 2017.
She received chemo for this and was in remission in Feb this year.
She had glandular fever many years ago - maybe 40.
Doctors suspect this has something to do with her developing a lymphoma.
Current situation is:
My Mum is at home receiving care.
She has lost her hearing, this is the biggest issue, she's living in a vacuum - we got good hearing aids but they're not helping much.
There may be difficulty processing what she is hearing due to the lymphoma.
She has lost her mobility, she can get around only with help, on a zimmer frame.
She's eating ok but that's about it.
It's very difficult for my Dad.
She has good and bad days, but she can't hear him most of the time. It's so frustrating.
We can see she wants to hear us and communicate but mostly she isn't able to.
How can we communicate with her?
Does anyone have any ideas?
I thought whiteboards and markers.
I read about assisted listening devices? Has anyone used one?
Thanks!
Ewan
Hi Ewan, difficult one this.
Like your mum, I also developed bad hearing loss and nerve damage in my ears due to one of the chemo drugs I was having a number of years back so I also have two hearing aids.
A few years later during my main chemo and Stem Cell Transplants I tended not to wear the hearing aids as it was just something else to faff with and as I also had bad chemo brain, thinking and talking was hard work....... and the hearing aids just made everything louder and more confusing. So it may be a coping mechanism for your mum.
The type of Lymphoma your mum has and her age (although she is not old) just makes this more difficult. Have you asked her team about the challenges you are having?
Have you tried something like taking out a photo album and having a look through old photos as this could be a simple trigger mechanism to see if she focuses on any specific memory.
You could try playing some simple games on a white board just to see if she engages...... it could be as simple as she is just mentally tired.
Not much use but let’s see if anyone comes along with more info.
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