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Not sure where to go from here..... Mum has recently been diagnosed with terminal lung cancer so no treatment will be given. The consultant has given her 6-12 months. She has had liquid drained from her lung which seems to lessened her cough. Mum is reasonably active and is just managing to look after herself with a carer going in 3 times a day. Should we be contacting yourselves yet or is it too early? And is there Dementia MacMillan Nurses in all areas? as I feel we will need to have someone like yourself to help us cope with the complications of dementia. At the moment I only talk of the cancer until mum mentions it, is this the right thing to do? She hasn't said anything about it for a few weeks but I'm sure she does remember she has it by what else she says.
Both me and my brother live away from mum so we are distance carers for her which is a added issue.
What sort of support can a MacMillan Nurse give?
Any concerns around your cancer Macmillan Centres are very good for information and if you are lucky enough to have a Maggies Centre nearby they are excellent.HI LorraineB "Thanks" I just got to stay positive take one stage at a time its not easy but I’m getting there
Hi, It sounds like you are feeling quite weary with the situation at present. Caring can be so stressful and it so important for you to have support. Do you have an Admiral Nurse Service available in your area to offer you support? Or it may be worth getting in touch with your local Alzheimer’s Society to see if they can offer you support. Have you had a carers assessment yourself which you are entitled to?There comes a time when the person you knew has been eaten away by dementia and you wonder why you’re going through the motions of getting their cancers cut out. I care for two. One has cancer and dementia, the other Parkinson’s, Alzheimer’s and arthritis. It’s tough looking after both and I manage because of my kid’s support. I didn’t want this for them though. It seems because we made the decision I am now also expected to ensure the chemist has delivered the injections to the clinic (which are used to keep on top of prostrate cancer.) It’s hard enough getting the PWD to the clinic in the first place. I no longer see the point of the treatments.
Hi,We've had this question come in via email:
"As my husband suffered not only dementia - moderate to high - but also severe delirium when in hospital procedures - is any examination that requires some intervention, anaesthetic etc worth it? I am beginning to think not, as I personally fall apart with just sundowning - very hard to keep the chin up!"
Sounds like a sensible plan. Watch and wait can be good practiceThis is a just one paragraph from My Consultants letter to my GP
We have reviewed this at Urology MDT meeting and it is not suitable for partial nephrectomy or ablation so his options either lie with CT surveillance or complete nephrectomy. He is completely asymptomatic from this and independent.
I am aware that if he has a general anaesthetic this could worsen his dementia and give him cognitive impairment for up to 18 months.
Taking all factors into consideration he would rather keep an eye on things for now. We have agreed to repeat the CT scan in six months’ time and he has requested I see him with his family in the clinic with the result so we can have a further chat about weather it is safe to continue surveillance or weather nephrectomy is required.
I decided to go for six months surveillance fingers crossed hopefully it was the right one
Hi, It can be difficult at times giving and retaining information when someone has dementia. It might be worth asking the Oncologist to explain things to your mother in a simple way, not overloading her with too much information. Explain she needs information given more simplistically if need be. Would he/she drawing diagrams help? Believe it or not people with dementia are usually pretty resilient when explaining and talking to them about their cancer. Be as honest as you can be with her. It is sometimes families that struggle rather than the person themselves as a way of wanting to protect their loved ones. It might help to ask if there is a Clinical Nurse Specialist to go into the appointment with you and then after the Consultation ask them to answer any questions you may have or want clarifying. There are 2 Macmillan/ Dementia UK Booklets available titled Cancer and Dementia which you may find useful which are available from Macmillan information centres or online https://be.macmillan.org.uk/be/p-23946-a-guide-for-people-with-cancer-and-dementia.aspxAnother question that came through:
"What advice would you give for explaining information given to us in my mother’s oncology appointments to her afterwards? The doctor usually speaks mostly to me which doesn’t advocate my mum’s independence in any way, she struggles to understand and always asks me loads of questions afterwards. I find it hard to explain it to her in a way that she will best understand or that won’t upset her too much. It’s hard to know what is best to say (or not to say) and I just want to keep her happy."
Hi, It’s a difficult question to answer as it all depends on the type of cancer and stage and prognosis of the cancer. Also it would depend on your father’s physical health too. The outcome should really be about your father’s quality of life and how treatment will impact on this. As he only has mild dementia, he may have more options around treatments but again it depends on whether he has any other physical or medical issues which may impact further on his health and put him at risk. General anaesthetic isn’t a great option for people with dementia as it can stay in the system a while and exacerbate the dementia. There is also the risk of developing a delirium (acute confusion) after this which could take a while to resolve and be distressing for the person and their family. People with dementia are 10 times at risk of developing a delirium. It can however with good care be prevented. Things like monitoring pain (observing for pain, agitation, grimacing, shouting out etc rather than asking if they have pain should be the norm). Encouraging fluids to be taken and recorded on chart, and monitoring bowels to prevent constipation may all prevent delirium. Also things like familiar objects and lights on at night may help. Avoiding invasive therapies like catheters can also help which may cause risk of infection.Another question we've had:
"My father is 86 and has mild dementia and was recently diagnosed with cancer. We are worried about the effects of different treatments on his dementia. If we opt for surgery, what are the potential effects of anaesthetic on his dementia? And are these likely to be temporary or permanent? And can chemo have an impact on a person’s dementia? We don’t want to try and cure one if this might make dad’s dementia worse."
Hi, that sounds like good and sensible practice and so pleased to see you have the support from Macmillan. The outcome should always be about maintaining quality of life for the person which isn't always active or curative treatment. I wish you and your father well.Dad is having no treatment for his oesophageal cancer just palliative stents so that he can eat. He has no recollection of having cancer or that he has had stents.
We followed the advice of dad's oncologist who did not recommend chemo for dad due to his age 89 frail state of health and his dementia. She said that chemo would make dad ill and probably spoil any remaining time he had. I am so glad that we did as dad has had 13 months since diagnosis and is still symptom free and very happy. A good choice in dad's case.
Dad has been referred to the hospice and we have had a visit from a Macmillan nurse who was very helpful and even arranged for dad's doctor to visit and fill out a DNAR form for him.
Hi,Here we have another question that came through:
"How do I explain my mum’s side effects of chemotherapy to her? Sometimes she remembers she’s having cancer treatment and accepts the side effects she’s having, other times she forgets she even has cancer and becomes bemused and upset by her side effects (tiredness, vomiting, hair loss). I don’t know whether to keep reminding her and upsetting her more or say it’s something else instead?"
Hi, Trying to get a time of day which is better for him to have the chemo may help as perhaps getting him up too early or later in day if tired may not help with his agitation. Would something like giving him an iPad to watch old comedy sketches/programmes e.g Morecombe and Wise or whatever he enjoyed help? Perhaps music via headphones may help. Making a photo album or a memory box and utilising these may also help or reminiscing about things that made him happy e.g. holidays. I guess the key is about activity really. Does he play dominoes etc. Reassurance and reminding him of what is happening and the time may help particularly if no clock in sight as to him it may seem forever if disorientated. I hope this is helpful.And another:
"How can I best keep my Dad relaxed and calm throughout cancer treatment? He can become agitated and distressed throughout the long waits before and the chemo itself. I hate seeing him worried and want to do my best to make him as comfortable as I can."
Hi,We've had another question come in ahead of today's Q&A:
"My mum was recently diagnosed with cancer, I’m worried that if we mention her dementia diagnosis in her cancer appointments it might affect her cancer treatment options. How should I mention her dementia and will this have any impact on her options?"
Hi, It may help if you try to plan treatment at a time which may be better for him. For example, he may need more time to get ready in the morning and rushing will not help his anxiety. If you mention this to the receptionist/therapists they should be able to help with this. Perhaps aim to make the day a more positive experience than negative, e.g. “You have to go for your cancer treatment again today but how about after we go for a nice cup of tea and a cake later - what do you think?” Sometimes it gets easier for the person when it becomes a little more familiar to them and they get into a routine. Depending on what the treatment is it is may be worth asking if they could have a familiar face to work with them consistently, e.g. the same radiotherapist.Another question that has come through:
"My husband has Alzheimer’s and bowel cancer. Getting him to the frequent hospital appointments for his cancer and treatment is a challenge to say the least! Especially when he forgets we are going / why we are going. Do you have any advice on how to make this easier for us both?"
HI LorraineB I have been in contact with Macmillan cancer care and get regular email updates but whilst I’m holding off the Surgery at moment not much they can help with maybe a different in September after my next CT scan I also have the Masonic Charitable Foundation primed and ready if needed so I’m on top of the game hopefully I wont need eitherAny concerns around your cancer Macmillan Centres are very good for information and if you are lucky enough to have a Maggies Centre nearby they are excellent.
You sound pretty clued up which is great. I wish you all the best in relation to both your conditions.HI LorraineB I have been in contact with Macmillan cancer care and get regular email updates but whilst I’m holding off the Surgery at moment not much they can help with maybe a different in September after my next CT scan I also have the Masonic Charitable Foundation primed and ready if needed so I’m on top of the game hopefully I wont need either