Mum (70) got admitted to the beatson on monday for cycle 2 (Acute myeloid leukaemia (AML)). She started her chemo last night.
Since her first cycle her memory has been really poor and she gets confused easily.
This morning when I went in she said she got up at 4am and was going to go downstairs to her kitchen to make porridge but she thought she would get lost in the corridors so just went back into her room. I said mum you’re in the hospital you aren’t at home. She kind of laughed it off. Then she said that yesterday she couldn’t remember her DOB.
I know chemo can cause cognitive problems. I keep telling her its the medication causing her memory issues. Today the nurse asked me for a private chat. She said they have concerns re mums memory, that she was wandering the corridor last night very confused and upset that there was other people in her room (she is in a 4 bed room with 2 other ladies). She was saying that she thinks they will need to fill out an AWC form for her (adult without capacity).
This is a big worry, has anyone had any experience or have any advice? I told the nurse about the concerns both my sister and I have re mums memory which is definitely getting worse and her not eating.
I don’t know what else to do just feel so helpless and mad that I can’t help her.
Hi, im sorry about your mum. Did she have memory issues prior to treatment? i know during my treatment for myeloma i was much more clumsy and had a degree of brain fog but not to your mothers extent. My father had alzhiemers before he died and it was very hard to go through with him so i understand your fears, at this point id say accept the help and hopefully when her treatment ends she may come back to being more like herself if not, shes already in the system and will get good care.
Thanks for replying. She had a few blips with her memory but nothing of any concern. Her older sister was diagnosed with Alzheimers a few weeks ago and she keeps saying oh I’m as bad as my sister
I think all we can do is wait and see what happens now. The nurses will be keeping an eye out now too so at least I know they will keep her right when we aren’t there.
Oh @Scottish78, @Bitsy has given you a great reply,
Your natural anxiety, helplessness and love for your mum really comes from your post.
I personally know that my logic goes and everything gets all too much when I am not eating properly and getting proper nutrition inside me.
Very personally perhaps I might to talk it over with my sister and perhaps talk it over with my mums nurses again,
Someone once said on this forum words that have always stayed with me that taking out an LPA (Lasting Power of Attorney) or AWC felt a real responsibility and brought up a lot of conflicting thoughts and emotions. The finality of the role reversal.,
The way they approached it was that it was not what they wanted for their mum, but what would their mum have wanted. If she was capable of making the decision.
Please do let us know how you get on and care for yourself as well as you look after you mum
just wanted to add this after reading your comment on lasting power of attorney, i signed an enduring power of attorney for my dad before he was officially diagnosed, which is very important as any decisions after would have not stood. none of us want to think of these things but it helped immensely having that in place. X
Dear @Scottish78
Thank you so much for posting and it is understandable that you feel helpless just now. May I ask whether your Mum had an issues with her memory prior to her diagnosis of Acute myeloid leukaemia (AML)? There are many reasons why your memory can be affected when going through such challenging treatments including fatigue, infection, anaemia, poor nutrition and emotional stress What are cognitive changes (chemo brain)? | Treatment for cancer | Cancer Research UK. Have the treatment team looked into the causes for your Mum? If your Mum has a Clinical Nurse Specialist I would suggest talking them about this situations so that you can advocate for your Mum. You can always ask the ward nurses to arrange a time for you to see the Haematology team so that you can talk this through.
If you would like to talk please do get in touch Blood cancer information and support by phone and email | Blood Cancer UK
Take care
Gemma
So a wee update. One of the elderly care oncology doctors called me on thursday. She had been for a chat with mum and wanted to get my take on her memory and how it has all come about. She said that mum was pretty upset when she spoke to her, couldn’t remember the year or her date of birth.
I explained to her what had been happening and she said in her opinion mum has delerium. I wasn’t expecting that! She is going to do some more extensive memory testing with her this week and refer her to the memory clinic for monitoring and follow up.
I feel relieved that the team are on it now. I just wish there was a way to fix it for her.
Thanks for the update @Scottish78 I expect it a really tough time for you, especially as you are powerless to fix it for your mum.
Please do keep updating us and how are you doing?
Look after yourself
I’m struggling to be honest. Hubby is under threat of redundancy, I’m taking panic attacks again, and I feel so guilty when mum doesn’t have a visitor but I can’t do any more than I’m doing.
Back up tomorrow, I need to sneakily ask nurses to weigh mum I’m sure she has lost more weight. I don’t know how she will do cycle 3 if she keeps losing weight.
Oh @Scottish78 You are doing a phenomenal job and no, you certainly cannot do any more than you are doing.
Can you set up virtual or phone calls to your mum occasionally.
Have you thought of seeing your GP, especially if you are having panic attacks…
Please do use our forum to say how it really is for you.
I get exhausted by emotional, psychological stresses as well as physical and practical issues.
Also I find that I get run down a lot quicker, than I can build myself back up.
Be kind to yourself and please do keep posting
