Dementia and mouth cancer

[Annakey]

Hello everyone,

I've been on here before not able to cope but now my husband has tongue cancer as well as dementia and I'm near breaking point. Of course I am supporting him, taking to treatment [radiotherapy] and doling out meds and trying to get him to eat something, anything. I think I could cope with the cancer but the dementia is making it so much worse. Every time we have to go to the hospital I have to explain and cajole him into going, same with the meds - every item, every time has to be explained and he has to be coaxed to take it and there are so many different things he has to take. I offer him all sorts of food including the fortified drinks the hospital give him but he won't take more than a mouthful. I am at my wits end and feel like simply walking away and letting someone else deal with it. We have another 3 weeks of treatment to go and then the aftermath of him getting well. The dementia is getting worse probably because of the treatment.

Don't tell me to think about how he must feel I do that constantly but it doesn't make it any easier to cope. Stepson looks after him one day a week from about 10.30 - 6pm but it isn't enough.

Has anyone else had to deal with cancer and dementia? Did you go mad or did you find help?

I haven't the energy to wade through loads of websites looking for help.

 

[nitram]

There is a sub forum
https://forum.alzheimers.org.uk/forums/caring-for-a-person-with-dementia-and-cancer.81/

 

[Annakey]

There is a sub forum
https://forum.alzheimers.org.uk/forums/caring-for-a-person-with-dementia-and-cancer.81/

Than k you that looks like a moribund thread so no help there.

 

[Duggies-girl]

@Annakey yes dad has dementia and oesophageal cancer and I could have written your post and yes it is just too much to cope with. I could deal with the cancer but the dementia just makes everything a hundred times worse.

Dad had no treatment other than stents but may have some palliative radiotherapy at a later stage if needed. I dread that and I fear it could just be too much for me. I am hoping that we don't get to that stage.

Dad's GP is very good as are his hospital team but the appointments, blood tests and so on are a struggle as dad has to go in a wheelchair now.

I get a monthly call from the hospice to check how dad is which I do appreciate. I do get some help now from family but it's not enough and never could be enough because as long as it goes on, it's always there and it's not the cancer it's the dementia.

You need more help or a break to get out and away from it, perhaps carers or a sitter but we haven't done that yet.

Yes I feel that I am going slowly round the bend. In fact my world has become so small that I seem to have suddenly dropped of the face of the Earth.

 

[DesperateofDevon]

@Annakey
I hope by replying to your post on another thread that knowing someone actually is following your struggles might just possibly give you some comfort.
Call 111
Ask for a Doctor to call today. They will have emergency social care available to help you immediately.
Don’t hold back on your own situation, tell them you are at breaking point- ready to walk away
The safeguarding issues alone in the fact that you are physically & mentally struggling means that action has to be taken

Hope that helps.

don’t take no for an answer ...

 

[DesperateofDevon]

@Annakey yes dad has dementia and oesophageal cancer and I could have written your post and yes it is just too much to cope with. I could deal with the cancer but the dementia just makes everything a hundred times worse.

Dad had no treatment other than stents but may have some palliative radiotherapy at a later stage if needed. I dread that and I fear it could just be too much for me. I am hoping that we don't get to that stage.

Dad's GP is very good as are his hospital team but the appointments, blood tests and so on are a struggle as dad has to go in a wheelchair now.

I get a monthly call from the hospice to check how dad is which I do appreciate. I do get some help now from family but it's not enough and never could be enough because as long as it goes on, it's always there and it's not the cancer it's the dementia.

You need more help or a break to get out and away from it, perhaps carers or a sitter but we haven't done that yet.

Yes I feel that I am going slowly round the bend. In fact my world has become so small that I seem to have suddenly dropped of the face of the Earth.

no @Duggies-girl we are just orbiting planet dementias trajectory at this moment in time. You are amazingly brave & I feel inadequate compared to all you do!

keep posting !
Sending love
Xx
((((((((Hugs)))))))))))

 

[TNJJ]

Hello everyone,

I've been on here before not able to cope but now my husband has tongue cancer as well as dementia and I'm near breaking point. Of course I am supporting him, taking to treatment [radiotherapy] and doling out meds and trying to get him to eat something, anything. I think I could cope with the cancer but the dementia is making it so much worse. Every time we have to go to the hospital I have to explain and cajole him into going, same with the meds - every item, every time has to be explained and he has to be coaxed to take it and there are so many different things he has to take. I offer him all sorts of food including the fortified drinks the hospital give him but he won't take more than a mouthful. I am at my wits end and feel like simply walking away and letting someone else deal with it. We have another 3 weeks of treatment to go and then the aftermath of him getting well. The dementia is getting worse probably because of the treatment.

Don't tell me to think about how he must feel I do that constantly but it doesn't make it any easier to cope. Stepson looks after him one day a week from about 10.30 - 6pm but it isn't enough.

Has anyone else had to deal with cancer and dementia? Did you go mad or did you find help?

I haven't the energy to wade through loads of websites looking for help.

Hi.My dad had SCC on his ear and legs which resulted in him having to have it cut out on both.It was a nightmare having to explain all the time as he couldn’t see what the fuss is about.Fortnately as he is housebound he had to go by ambulance.I couldn’t go as not allowed as they needed it for others (transport ambulance)so they had to deal with it.He is having a check up in November so it will be the same scenario.I don’t envy you .I was glad to hand over the responsibility tbh.

 

[Shedrech]

hi @Annakey
you've a lot to contend with no wonder you feel as you do
if you have the energy, start making a nuisance of yourself as you need and deserve much more support
contact your LA's Adult Services and say you are at carer breakdown … tell them you need urgent support as your husband is such a vulnerable adult and would be at risk of neglect immediately if you become ill and cannot care for him … make it clear that you are ready to walk away, that you are not simply a bit tired, that you cannot continue as you are
tell them you need an urgent/emergency assessment of his care needs and a high level care package … from what you say, you need some respite if not a move into fulltime residential nursing care … mention that you think your husband should be assessed for CHC funding his needs are so great
there should be emergency contact details, so do not feel you must wait until Monday … and yes call the out of hours service/111 to ask for help, the more you do so, the more it is noted that you are calling out for support
definitely call your GP and tell them YOU are collapsing under this strain … and if you fall, your husband will fall too

Admiral Nurses are there to support the carer … even if there isn't a nurse local to you, they have a Helpline and a lot of knowledge and contacts and understanding - they are open until 5 today 0800 888 6678
https://www.dementiauk.org/get-support/admiral-nursing/

there is also the AS Dementia Helpline, do call to talk things over with them .. they are open today until 4 - 0300 222 11 22
https://www.alzheimers.org.uk/get-support/national-dementia-helpline