Alzheimer's and cancer, double whammy

[nick72]

Hello.

I've just posted my first post in the 'welcome' thread. I'm repeating some of that here.

My dad has mid-stage Alzheimer's. He got it early. He's only in his 60s.
His main carer was my mum. She's just been diagnosed with cancer. She had a serious operation yesterday and is in hospital.

I've just taken leave from work and am trying to get my head round everything. It's all pretty overwhelming. But not as overwhelming as it is for my dad.

I'm still getting my head around the basics of dad's care -- what the GP does, what social services do, etc. I'm sure I'll be asking for help on those kinds of things.

But the main thing I could do with advice on right now is how to help my dad with the trauma of mom's condition.

He had a steady routine with her, and they ticked along OK. But obviously this has completely floored him. He knows she's got cancer, but can't retain the details. He wants to see her in the hospital, but then can't remember he's seen her -- but does remember the emotional impression of it.

Althought I'm (completely!) new to the 'carer' role, I know about the 'thinking' / 'feeling' worlds of Alzheimer's patients; I've use ideas from 'Contented Dementia' when I'm with my dad, and have always been good at getting him to a 'happy place' in conversation. But this is completely different obviously. Utterly overwhelming for all of us.

If anyone has any thoughts at all, that'd be amazing.

 

[Noorza]

Do you think your mum would benefit from a visit from him or do you feel he won't cope right now?

I don't have any magic answers, your situation would be overwhelming for anyone.

You'll find a great deal of support and ideas from others.

 

[Noorza]

My first thought is: Is there any point in telling him she is ill right now would he cope better if he thought she was just having a little break? It might be less distressing for him.

 

[Grannie G]

Hello Nick

What a nightmare for you .

If it were me, I would allow your dad to be sad. With a wife with cancer, no matter how advanced or confusing the dementia is, being in a happy place is a very tall order.

I know he`ll forget he`s seen her but you can tell him you`ll go `tomorrow`.

I`m only posting my opinion and what I would do within my own situation if I was in your position.

You are worried about both parents , your dad will be upset and worried about your mother. It can`t be a happy household but there is no avoiding it. Living with pretence will put a bigger strain than ever on you and your parents so I feel sure it will be better to be real.

I hope this helps. If not please feel free to ignore. It was posted in good faith.

I do hope you get the support you need from TP. There will be other opinions I`m sure.
Take what helps you and keep posting.

 

[Noorza]

Grannie I don't know what I'd do for the best in this case, this is a tough one, I've just put an idea into the pot for Nick to think about, I'm not sure it would be the right thing though. Depends on how long Dad's memory is I guess. If he's going to forget she's got cancer, being told over again as if its the first time would be distressing.

It doesn't sound like that though as he retains the information that she's in hospital. I'm only thinking out loud here.


It's a tough call.

 

[Polly1945]

Hi Nick72

Just wanted to welcome you to Talking Point. So sorry to hear about your parents. As if it isn't bad enough having to contend with Alzheimers, now your poor Mum has cancer - Life can seem so unfair.

I do hope that your Mum's op. went well and that she is on the road to recovery. It must be so difficult for your Dad, especially as he can't remember visiting her in hospital.

You will need to try for extra help especially when Mum is discharged from Hospital. Is your Doctor helpful in these matters. I hope that your parents have a good social worker who can organise things for when Mum returns home.

I'm sure that others will come along soon and give you some practical advice. Keep posting.


Pauline
x

 

[nick72]

thank you thank you

Just wanted to say thanks -- just to hear other voices at the moment is helpful.
It's at the worst possible time in his Alzheimer's: he retains the key details (cancer, serious); he asks repeatedly for facts and clarification, and writes them down. He asks when he can see her next. He knows what he wants. But equally, I'm aware that it means he's repeatedly getting a lot of distressing information 'for the first time'.

As this has all happened so quickly, I've never met his GP and don't even know whether he has a social worker. (I live at the other end of the country). Those are things for me to sort after the bank holiday.

thanks everyone.

 

[Noorza]

Just wanted to say thanks -- just to hear other voices at the moment is helpful.
It's at the worst possible time in his Alzheimer's: he retains the key details (cancer, serious); he asks repeatedly for facts and clarification, and writes them down. He asks when he can see her next. He knows what he wants. But equally, I'm aware that it means he's repeatedly getting a lot of distressing information 'for the first time'.

As this has all happened so quickly, I've never met his GP and don't even know whether he has a social worker. (I live at the other end of the country). Those are things for me to sort after the bank holiday.

thanks everyone.

I found the whole system a bit unjoined up. I think you are in a good position ironically that your mum is in hospital. In my area a REACT team have to assess whether it is safe to discharge Mum after her medical needs have been met. What happens is an OT assesses what she can do, make sure her notes state she lives with her husband who has Alzheimers. Talk to the Ward Sister, tell her you are concerned that your Mum can't cope with your Dad while she recovers without help.

In our case we had an OT to the house, put in raised toilets, commode, wet room, grab rails, (over a few years) a carers package for 6 weeks free after discharge, where the carers came morning afternoon and evening. I think you'll be able to get these assessments done while your Mum is in hospital. They tend to get on with it quicker because they want the ward bed back. They then reassess your parents' needs near the end of the six week period. I'm fairly sure it's not just my NHS trust who do this. Check with the nurse/sister and see what you can put in place.


Remind them if you need to that they have a duty to ensure your mum has a safe discharge.

 

[nick72]

I found the whole system a bit unjoined up. I think you are in a good position ironically that your mum is in hospital. In my area a REACT team have to assess whether it is safe to discharge Mum after her medical needs have been met. What happens is an OT assesses what she can do, make sure her notes state she lives with her husband who has Alzheimers. Talk to the Ward Sister, tell her you are concerned that your Mum can't cope with your Dad while she recovers without help.

In our case we had an OT to the house, put in raised toilets, commode, wet room, grab rails, (over a few years) a carers package for 6 weeks free after discharge, where the carers came morning afternoon and evening. I think you'll be able to get these assessments done while your Mum is in hospital. They tend to get on with it quicker because they want the ward bed back. They then reassess your parents' needs near the end of the six week period. I'm fairly sure it's not just my NHS trust who do this. Check with the nurse/sister and see what you can put in place.


Remind them if you need to that they have a duty to ensure your mum has a safe discharge.

Thanks Noorza. I am so new to all of this. What's an OT?! ;-)

 

[rajahh]

Occupational Therapist. they sort out what physical aids are needed for the patient to return home . and provide them. like chair raisers , grab rails etc etc

 

[Noorza]

Thanks Noorza. I am so new to all of this. What's an OT?! ;-)

Occupational Therapist, sorry. Check out the system on your Mum's NHS Trust but they have to make sure she is safe at home. They may also allocate a social worker too or refer her for one.

I was dizzy with people in and out, appointments, financial assessments, builders, social workers, occupational therapists. I started to lose track of who had recommended me for what but the maisonette is safer for her.

 

[nick72]

What a nightmare for you .

If it were me, I would allow your dad to be sad. With a wife with cancer, no matter how advanced or confusing the dementia is, being in a happy place is a very tall order.

I know he`ll forget he`s seen her but you can tell him you`ll go `tomorrow`.

I`m only posting my opinion and what I would do within my own situation if I was in your position.

You are worried about both parents , your dad will be upset and worried about your mother. It can`t be a happy household but there is no avoiding it. Living with pretence will put a bigger strain than ever on you and your parents so I feel sure it will be better to be real.

I hope this helps. If not please feel free to ignore. It was posted in good faith.

I do hope you get the support you need from TP. There will be other opinions I`m sure.
Take what helps you and keep posting.

Yes I agree: I don't want to pretend. and it's going to get worse before it gets worse. His wife is in a lot of pain, and might not have long to live -- even without Alzheimer's he'd be feeling angry, confused, and inconsolable. I don't want to deny him that.

 

[Noorza]

Yes I agree: I don't want to pretend, and it's going to get worse before it gets worse. His wife is in a lot of pain, and might not have long to live -- even without Alzheimer's he'd be feeling angry, confused, and inconsolable. I don't want to deny him that.

I totally understand that. I hope your mum defies the cancer and pulls through. I really have no magic answers here. Often people will post and you can see a way through their current or immediate problems. Here I think you just go with your instinct, no rights, no wrongs.

 

[nick72]

I totally understand that. I hope your mum defies the cancer and pulls through. I really have no magic answers here. Often people will post and you can see a way through their current or immediate problems. Here I think you just go with your instinct, no rights, no wrongs.

Yes, I see that. Thanks.
Just putting it down in posts helps me think it through.
Thanks again.

 

[nick72]

updating the thread

I just wanted to close the circle of this thread.

My mum passed away in the small hours of Weds night / Thurs morning.
The end came quickly, but we were with her for all of the last 48 hrs, and were all able to say goodbye; she was clear she wanted to go.

My dad was brilliant really, given how the stress and anxiety had exacerbated his Alzheimer's at such a difficult time.

I'll post at some later date about that.

 

[Mamsgirl]

Oh Nick I'm so terribly sorry, my deepest sympathies, you must be worn out.

Toni x

 

[Pottypeg]

So sorry for your loss

 

[yoyo]

such a moving family story, my deepest sympathy. hope your dad settles alright x