Hi can anyone understand/share my concerns. My mum was told two days ago about her cancer and radiotherapy option or no treatment and when the tumour blocks her bowel possible emergency colostomy or let nature take its course. I had informed the doctor before the appointment of mums Alzheimer's so here we are two days later mum can't even recall going to the clinic and wants to know why nobody is telling her what's going on! I knew this would happen mum cannot process information like a normal person so I am left constantly repeating myself telling mum what's wrong with her and she has to make a decision on what she wants to do. I am finding this so hard to cope with. I am hoping another carer on here can offer some advice please.
Hi there, I hope you get some good advice from people who have been through this. I wonder if age concern or any of the dementia charities would be able to help you with this, your and your mums GPS or indeed macmillan. Do you have power of attorney in regard to your mum's health, is it something that you would want or be possible.? Has your mum given any indication of what she wishes or do they change each time you ask. Have you any other family members that could help share the burden of decision making. Just some thoughts, I don't know if you have already considered them please keep in touch and let us know how you get on of you wish to. Wishing you all good things, pam xx
Sorry that you are here Schroedinger My 89 year old dad was diagnosed with advanced oesophageal cancer almost 18 months ago. Due to his frail state and his dementia they would not offer chemo and he was put on palliative care only. This was just to relieve any symptoms and he was given a stent so that he would be able to eat and this worked well. Surgery was not on offer as his oncologist said that dad would be unlikely to survive it and she also said that chemo would spoil any remaining time that dad had left.
Anyway dad is remarkably still with us although he did have to have 2 more stents with the last one being almost a year ago. His oncologist was right in my opinion because dad has had almost 18 months of relatively good quality living.
Now for the alzheimers problem. I no longer mention the cancer or treatment possibilities because dad has a memory of about 30 seconds and there is no point discussing it anymore. I take dad to his appointments and I always go in with him. All of his doctors have been good and they will talk to dad and then ask him if they can talk to me and he always agrees. My dad agreed a long time ago that we would always let the doctors decide because they know best and up to now that has worked for us and I have not had to make any decisions.
I doubt that your mum will be able to make a decision and she will probably forget even if she does. Any surgery or chemo is likely to worsen the dementia and the doctors should know this and take it into consideration. My dad is just plodding on slowly oblivious to the fact that he is ill or that he has dementia and I am hoping that he just goes to sleep one night and does not wake up because I truly believe that would be the best thing.
I hope you have some kind of positive outcome from this but I feel that my dad's cancer has paled into insignificance compared to his dementia, it just makes everything so much more difficult.
Wishing you well and sending hugs
I'm sorry to hear about your mum and the decisions facing your about her treatment.
I think as time is of the essence that starting a lasting power of attorney covering your mums health may not be the answer you could seek the services of a solicitor for advice on different ways to make decisions on your mums health needs.
According to the mental capacity act It must always be assumed that everyone is able to make a decision for themselves, until it is proven that they cannot. The law says that the only way to establish this is to do a test or assessment to find out whether a person has the ability to make a particular decision at a particular time.
If your mum is in hospital you could ask the hospital social worker or occupational therapist to carry out a Capacity Assessment
Please open the green link below for more information
Please ensure that if go along this route that you involve all members of the family in this decision, the last thing you want is for someone to mount a challenge to the decision at a later date.
When you open up the link it should take you directly to Assessing capacity link from there you will see other information as follows
All of which might be of help to you in deciding the best way forward for your mum and yourself.
I hope this is of help to you.
You have available to you as part of the Mac facility you can access the advice of our Ask an Information and Support Adviser group page where you can ask them questions or
you can contact our very friendly telephone support line on 0808 808 0000 and have a chat with them about it.
Personally I think if there is a possibility of a tumour blocking her bowel than investigations should be carried out as soon appointment, planned surgery is better than waiting for something to be done as an emergency.
Please keep in touch with me if you need more information, but mainly to let me know about the decisions were made and how mum is getting on.
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thank you for replying. So sorry to hear about your dad and I totally understand about him going to sleep one night, which is exactly how I feel about my mum. I don't want her to be in pain or suffer side effects from any treatment. When I picked her up today to take her to our local McMillan centre in that ten minute journey I had to tell her again what was wrong and she changed her mind twice out having radiotherapy. During the conversation at the McMillan centre she changed her mind again. This is very predictable behaviour of mum and I know it's the Alzheimer's/Dementia but to add to ts mess she then proceeded to tell the same story three times about her carer, part of me is trying to see the funny side of the recurring story and then I have to distance myself from the rambling a all I can think about is needing a new cooker to cool Christmas dinner in!!!! Random I know but the mere thought of her Dementia being worse than it is now with treatment makes me more determined ttry and gently discourage her from having treatment either way I will feel guilty. You should know the reason my cooker is broken five years ago my mum decided my cooker needed a good clean and whenum takes on an electrical cleaning task she takes the whole item apart. Three hours later the cleaning was still in progress and I had to take mum home guess what she couldn't remember how to put itack together so I threw all the parts screws nuts bolt and glass in the oven shut the door and decided never to go there again. I went out and bought a microwave and a single induction hob for a single girl!side
Sorry about the smiley faces only wanted one and several joined in.
Hi thank you for taking time to reply I do appreciate it.
I took mum this afternoon to our local McMillan centre absolutely wonderful. During the journey there I had to tell mum what was wrong with her again and in that ten minute journey she changed her mind twice. Once talking with the McMillan counsellor she changed her mind again. I am going to see mums GP this week. I don't have power of attorney over her health and welfare but do over her finances she has no money but randomly looking at her bank statement last year I realised she was in a mess all sorts of companies taking money off her on a monthly basis one was for £99 per month for a wine club and mum doesn't drink and I have never seen any wine. Long story short finally sorted that mess out and then I realised mum was being talked into signing up for stuff by phone so I then after giving her so many talks on bogus people ringing her I took her bank card and cheque book off her. At that time I was the Miss Marple of weeding out scammers and using many expletives when I was at mums if the phone rang. I did try her provider BT and TPS they were no help. I have a sister who lives in America she is a nurse and wonderful on advice and what she would do!!!
We do have friends and they are lovely but all mums friends as frail in mind and body as her. A longstanding family friend came to mums consult last week as well and she like most people I have spoken with are appalled at mum being offered radiotherapy.
Thank you Pam for your kind words.
Hello Schroedinger - such a difficult situation. Dementia UK is a smaller charity than the Alzheimers Society but they have a helpline which is staffed or responded to by nurses who specialise in dementia. If they cannot answer they call back or respond to emails. They may well have some advice about how to respond to her and how to manage the situation.
Oh dear I can just picture you mum taking the cooker apart, you just have to smile and get on with it I suppose.
I think that I have been lucky up until now with dad's doctors giving exactly the kind of advice that I want to hear and I am lucky that dad is very pleasant and compliant. He is also very happy and funny although no short-term memory to speak of.
I am amazed at how he has survived all of this. He had pneumonia back in February and was in hospital with delirium and had a small heart attack and a stroke while in there. He also had 3 falls while in hospital, one of them resulting in an almighty bump on the head but he still came home. The hospital stay really affected his dementia and he now does not recognise his own home at times and it is more difficult to get him out of the house so now we only really go out for appointments.
I feel the same about dad, I don't want him to suffer in anyway and at the moment he isn't and is happy.
Love the smilies, the more the merrier.
Thank you. Your dad sounds like a real trooper to me to overcome all these awful obstacles. I am constantly amazed by our parents generation. They have tenacity and strength that I am sure I will never have. The lives they have lived through war and hardship losing friends and family yet still able to carry on. I have the utmost respect for our parents and their generation.
Mum has had many falls at home and outside in the last two years the most recent left her face in a terrible mess and she was in the floor for over six hours, yes she has an alarm pendant round her neck but forgot to use it.
Let's treasure each day.
Thank you for replying.
I went to a carers only meeting run by the Alzheimer's society a couple of weeks ago. I have been to them before and always learn something new. I will contact the Dementia people as well I am open to all.suggestions and very grateful.
Hi there, just a random thought that popped into my head for some reason this morning. Would your mum be able to lie still enough for the radiotherapy? I don't know anything about the procedure but assume lying still is necessary. I hope that things are becoming clearer. All good wishes Pam x
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