Dad with dementia, mum starting chemo

[Strugglingandtired]

Has anyone had to support their parents when one has dementia and the other is starting chemo.

Dad has Alzheimer’s, it’s definitely getting worse despite being on medication but he’s relatively independent. Mum has tried to talk to him about her starting chemo but he just looks at her blankly and can’t process it at all.

Shes recently had surgery and I was able to stay up there for a few days to support (I’m 2 hours away). He seemed to get that she couldn’t do a lot but she recovered really well so it didn’t have a huge affect on him. I’m just worried that with chemo ongoing for 6 months that there may be days when she’s struggles and he just won’t get it.

I don’t really know what I’m asking but I guess I just need a hand hold.

Are there (or can it be arranged) to have carers come in to help your mum? It sounds like she's going to need some help and if your DF isn't comprehending why, having someone come in at least once a day could be a help. It might also introduce the idea of carers to your parents, as it sounds like your DF is going to reaching a point at some time not too distant where he will need help (or where your DM can't cope).

Can you organise help in the house, at least in the week after the chemo treatments, or whenever your mum is at her lowest? Speak to her medical team or one of the cancer charities for advice.

This year my DM had strong radiotherapy and DF (although we didn’t know it) had Alzheimer’s and depression which he was medicated for.
What I observed was they he was largely no help at all. And sometimes would make it all about him.

Anyway this isn’t encouraging but basically he was no help at all and didn’t take in any extra responsibilities. If DM asked him he might do things - but often w bad grace.
Sometimes he came to her appointments and sometimes not. He definitely didn’t ’look after her’ in anyway at all.
Are they getting attendance allowance?
Would your Mum consider a cleaner - mine refused and sort of managed it all herself.
I did get the house deep cleaned when DM was in hospital.
Also encourage taking taxis to treatment unless you are able to drive her.
Tell her cancer nurses the situation. It doesn’t change much but it does mean they are aware during treatment and don’t expect anything from your DF

Sadly, there is no way that they will accept help. Maybe if she struggles with treatment but definitely not right now.

I have made sure that her oncologist is aware as she doesn’t see herself as a carer or doesn’t like to admit it.

If this is their attitude now to help, I would almost be praying that your DM does "struggle" and relents to some help. As your DF's condition is not going to do anything other than deteriorate and even a wife in good health will end up struggling to meet all his needs (or rely more and more on you to do that). Getting them to accept a cleaner if not a carer would be a really good step, and using your DM's current illness as the catalyst is going to be easier than it's likely to be later (especially if your DM is in denial about your DF's condition).

I’m sorry @Strugglingandtired but if it helps I are in the same position.
DM briefly had some help but she talked too much and unfortunately wasn’t that helpful. So now they are even more reluctant to have help.
So my tip would be if they will accept help take it slow and try to find the right help.
Good idea re the oncologist I think that’s important to do. I have found the cancer nurses really helpful. Sometimes just as a listening ear for Mum and also to help her understand she is too unwell to care for DF - which surprisingly she is sticking too.
They will also share information with you and also explain what appointments are for etc.
I wish your Mum well with her treatment. Know you are not alone and also the staff have seen it all before. I have no qualms telling NHS staff that DF can’t care for DM and visa versa. They are both just to unwell and it isn’t magically going to happen.

I’m sorry you’re in the same boat. It’s really hard and made worse by the fact that I’m an oncology nurse myself so have seen just how brutal chemo can be. In some ways I’ve got to just let her find that out herself in the hope that they will accept help.

Can you perhaps have a word with an oncology nurse at your DM's hospital to ask if they'll "insist" that she gets help in while undergoing the chemo? Sometimes people listen to those they perceive are in authority better than their family members. If she thinks it's something that has been strongly suggested by the medical team treating her, might she and your DF be more inclined to accept some help?

Sorry that you have been through it too. They couldn’t get attendance allowance as he’s still to independent and goes out alone. He has got lost a few times though. He has a follow up in September which I will go to so that they realise how bad he is becoming.

My parents are a nightmare in that they are of the generation where taxis are wasteful and they would rather get 2 buses somewhere. I have impressed upon her if she is unwell that she has to get a taxi to hospital and I have set up uber for her. They are by no means rich but there are some small savings and I just wish they would use it to make their life easier.

im not trying to be negative with everyone’s suggestions but it took me ages to persuade them to do an online shopping delivery when she was post op. It really is just a case of chipping away and planting the seeds.

Mine are exactly the same w Taxis. It was only when I pointed out that they could spend their money in carers later or taxis as they chose now that they relented. But it did take a while.
Thats concerning about the AA. The person from the dementia service thought my Dad would be eligible but maybe not as he is still going out independently. 😫
Our situations seem very similar

I think it was the dementia service that said they would be entitled to AA but when they applied they got turned down. I wonder if in light of him regularly getting lost and now her diagnosis whether it would make a difference. So far she has declined support from the cancer support workers but I will encourage her to talk to them as they are normally very good with benefits advice.
i think she just needs to come to terms with it all as she doesn’t like being seen as a carer or as a cancer patient. With surgery it was easier to ignore the cancer but now that there’s ongoing treatment she needs to come to terms with being a patient. I will revisit it all once we have the first treatment out of the way as her head is focussed on that.

Have another look at AA and see if you can get help from Citizens Advice or Age UK to help complete the form - do NOT let your mum do it, you need to complete it with the worst days in mind, not the best!

But yes, like so many of us, sometimes you have to just step back and wait for the crisis before people accept that a cleaner or carer will keep them independent, not make them more dependent. I used to call it "delegating" rather than getting help.

Strongly recommend applying fir aytendance allowance again, individually

It is not means tested

Can be spent on anything to make tgeir lives easier

Cleaner, gardener, transport, days out, meals out, break away, medical aids

Apply here

It is not means tested

They should both apply seperately

https://www.gov.uk/attendance-allowance

Oh gosh I feel for you OP. Would your father actually make your Mum's day to day life more difficult? Would he expect her to be cooking, cleaning, washing and ironing as normal? I've had months of chemo, in central London, and I live alone. I did used to get Ubers from the station after treatment/appointments. I just muddled through the rest of the time, but no one was expecting me to cook (I totally lost my appetite and couldn't have given a shit about food!).

I think you might have to wait until the cumulative effects of chemo start to bite, and then find some kind of help, which she might accept at that stage. Thinking about my own experience, a cleaner would have been great, but I didn't need 'care' as such.