Mum (71) in denial; refusing medical appts so no support for Dad (sick carer, 81)

[Steve2427]

Mum (72) in denial; refusing medical appts so no support for Dad (sick carer, 81)

Dad is at breaking point; feeling so very isolated, stressed and angry all of the time. He's been told that there's only support for him to access as a carer once a diagnoses has been made. Mum won't co operate with any health professionals so Dad has no support or guidance and no hope of getting any.
Mum's confusion, anxiety and anger is every day now.
Dad has his own poor health to manage too (cancer, chronic high blood pressure and a history of mental health issues around stress).

Is there any help/support out there for a carer of someone who's blocking a diagnosis being made?

Dad doesn't know how to use a forum to I'm posting to help him.

 

[Mimi5]

Hello to you both and welcome to TP You will always find support, advice and info here.

What about your parent's GP? If the GP has a helpful attitude I would say start there as your mum needs some sort of medical assessment. You can also visit the GP and give them information (make some notes and detail specific incidents/behaviour) they can listen, although obviously can not discuss medical info about your parents with you.

We actually had to change GP for my MIL who I care for, to get a more objective view. So I would say if you need to you can also do this. "Fresh eyes" on the situation, we were given this advice by our OT!

Also, I am sure you can approach social services. Even if only so that they are aware of the situation.

Your father is entitled to a carers assessment if nothing else!

Sorry not to have more suggestions, but I bet somebody else will be along with more shortly! Hang in there, you are most definitely not alone with this sort of situation.....sadly.

 

[Grannie G]

Hello Steve

Ask your dad to see their GP with a list of all the concerns he has about your mother`s behaviour and condition.

The GP needs to know how difficult your dad is finding managing your mother`s behaviour. There`s no point if he`s polite and loyal and doesn`t tell it as it is.

It will be painful for your dad to feel he is betraying your mum but he needs to realise she is ill and needs more help than he can give.

If your dad doesn`t want to go perhaps you can go for him.

 

[Steve2427]

...What about your parent's GP? If the GP has a helpful attitude I would say start there as your mum needs some sort of medical assessment. You can also visit the GP and give them information (make some notes and detail specific incidents/behaviour) they can listen, although obviously can not discuss medical info about your parents with you.

Hi Mimi5,
Thanks for your reply.
Your comments are helpful.

Mum went to the GP (after 7 years of persuasion) for a general check-up. The GP said that she shows symptoms of dementia and referral to a memory clinic was made. This is where the heels dug in. "What to doctors know anyway?" "I'm just not going, I don't trust doctors." So without the tests - no diagnosis - no support services.

Dad has just booked a GP appointment for him... ... the soonest is 25th Sept - a whole month away! Wow, what a state our health services are in!
Hopefully he'll be much more candid about explaining the situation than at that general health check.

 

[tss502]

Does mum have to be told she is going for tests for her memory? Can you tell her it's a more general appointment and make sure that the consultants are aware of this so that they can be sensitive to the situation? Once there is she likely to be compliant with the medical professionals or would she be likely to refuse tests if she realises what it is for?

 

[Steve2427]

Ask your dad to see their GP with a list of all the concerns he has about your mother`s behaviour and condition.

The GP needs to know how difficult your dad is finding managing your mother`s behaviour. There`s no point if he`s polite and loyal and doesn`t tell it as it is.

It will be painful for your dad to feel he is betraying your mum but he needs to realise she is ill and needs more help than he can give.

If your dad doesn`t want to go perhaps you can go for him.

Hi GrannieG
When my father tried this before, he was told that the GP would not discuss Mum's health with him; patient confidentiality! Since then, he wrote to the GP about Mum's developing behaviours. That was when the GP invited Mum in for a "general health check" which included a basic memory and cognitive processing test. The GP said that she shows symptoms of dementia and referral to a memory clinic was made. This is where the heels dug in. "What to doctors know anyway?" "I'm just not going, I don't trust doctors." So without the tests - no diagnosis - no support services.

 

[Steve2427]

Does mum have to be told she is going for tests for her memory? Can you tell her it's a more general appointment and make sure that the consultants are aware of this so that they can be sensitive to the situation? Once there is she likely to be compliant with the medical professionals or would she be likely to refuse tests if she realises what it is for?

Hi tts502,
I beleive there's no chance of her going anywhere near a medical professional. That's the sticking point!
Mum went to the GP (after 7 years of persuasion) for a "general check-up" after Dad wrote to the GP about her behaviours. The GP told her that she shows symptoms of dementia and referral to a memory clinic was made. This is where the heels dug in. "What to doctors know anyway?" "I'm just not going, I don't trust doctors." So without the tests - no diagnosis - no support services.

 

[Evoque]

I wonder if you can arrange for a home visit? My mum had her most recent memory test done in the comfort of her own home.

 

[Steve2427]

I wonder if you can arrange for a home visit? My mum had her most recent memory test done in the comfort of her own home.

Hi Evoque,
I have suggested this, but Mum flatly refuses any medical appointments.
I'm sure it's because she's afraid of the future. Denial and "head in the sand" are her default positions when dealing with difficulties in life. Any ground conceded in discussions is later forgotten or denied so no consent to an appointment is given.

I fear that no support will be available until "crisis point" which of course is scary because crisis point will only be when she becomes in direct risk of harm.

 

[pitufi]

could you get a home visit from the memory clinic and not tell her? then when they get there (but let them know shes not aware of their visit) dont make a big deal of why they are there, just let the check up be almost like a conversation, dont mention that they are professionals etc, just there to help?

my mom is farther along than yours from the sounds of it, and she responds better to visits and professionals if i dont explain and just say they want to just have a chat for 10 minutes and then they go away!

I'd also speak with social services anyway to explain your and your dad's situation and see what they can do for either fo you if your mom cannot be helped.
as mentioned by someone else, she will then be in their radar and any future contact will be much easier.

 

[Risa]

Steve, my family were in the same situation with our Mum and to be frank, it eventually got to the point that Mum wasn't given a choice whether she wanted to see the GP/Memory Clinic - sometimes the kid gloves have to come off. An appointment was booked for the Memory Clinic, Dad told her he was taking her out for a drive and when they got there he escorted her in. Mum wasn't a happy bunny but it had to be done.

My only regret is that we didn't do it earlier as by the time she was diagnosed she was in the severe category and we were desperate for help by that stage

If you haven't already got LPA for Health and Finance for your Mum try to get it in place. I've found that without the LPA for Health, I wouldn't have been able to drive any of the processes in getting medical and social care help for Mum.

 

[Ethelburga]

My mum was the same.

Hi Mimi5,
Thanks for your reply.
Your comments are helpful.

Mum went to the GP (after 7 years of persuasion) for a general check-up. The GP said that she shows symptoms of dementia and referral to a memory clinic was made. This is where the heels dug in. "What to doctors know anyway?" "I'm just not going, I don't trust doctors." So without the tests - no diagnosis - no support services.

Dad has just booked a GP appointment for him... ... the soonest is 25th Sept - a whole month away! Wow, what a state our health services are in!
Hopefully he'll be much more candid about explaining the situation than at that general health check.

My mum was referred to the memory clinic and she said she wasn't going. She said it was a waste of time and threw the letter in the bin. It took a lot of very gentle persuasion to eventually get her to go. I think deep down she knew there was a problem. We told her the GP wanted her to go and that he needed to check it wasn't anything serious. We suggested they needed to see if she had a tumour or something that needed treatment. That seemed to help. She also had to have a brain scan which she was also very cross about but went along and complained continually. We felt she thought she was wasting everyone's time. It took a year to eventually get the diagnosis of Alzheimer's and two visits to the memory clinic. She still thinks it's wrong and has decided the CPN who very gently and kindly told her the diagnosis was a silly man and not very nice.
Deep down I think it is fear. The good thing is she soon forgets about her diagnosis.
I hope you can persuade your mum to go. I'd try your Gp again regarding your dad, ask for a cancellation and say how concerned you are. Your dad can always give them permission to talk to you if feel he isn't being pushy enough.
Keep us informed how it goes.

 

[Steve2427]

LPA and consent

... If you haven't already got LPA for Health and Finance for your Mum try to get it in place. I've found that without the LPA for Health, I wouldn't have been able to drive any of the processes in getting medical and social care help for Mum.

Hi Risa,
Doesn't setting up an LPA require the person's consent?
I did ask her last year, but that went down really badly, so no consent.

We do, however, have the LPA over financial and property affairs already set up from years ago when they (parents) amended their wills.

Sorry to appear negative, I welcome all suggestions.

 

[Amy in the US]

I'm sorry to hear about your situation. Clearly, both your parents need support, and that must be very worrying for you.

You probably know this already, but as you mention your dad has cancer, I wonder about contacting the MacMillan Nurses for support for him? I hear very good reports.

Info is here: http://www.macmillan.org.uk/information-and-support/coping/getting-support/macmillan-nurses

They have a support line you can call, Mon-Fri from 9 am to 8 pm at 0808 808 00 00

It could not hurt to give them a call and see what they suggest.

I agree with arranging for an appointment with the memory clinic (a home visit perhaps), and not asking your mum if it's okay, and also not telling her about it in advance. Just arrange it. If she objects when they turn up, lie and say it's a visit for your dad. Or if you have to take her, say you're going out for lunch/tea/a drive/an appointment for your dad, and just take her. Don't tell her ahead of time, and don't let your dad talk to her about it in advance, either.

I don't mean to upset you, but there is no point in trying to have a logical discussion with someone with dementia, or to get them to "accept" their diagnosis. Reason and dementia don't mix and if you try to reason, you will likely only provoke upset and distress, especially if she tends to be anxious anyway.

A lot of PWDs (persons with dementia) have something called anosognosia, which is the fancy medical term for the inability to understand/comprehend there is anything wrong with them, due to the damage the dementia has caused their brain. They just can't grasp that there is something wrong, so there is no point in trying. It's like asking someone with a fractured leg to weight bear on it.

So bear in mind it may not be denial in the classic sense of your mother refusing to listen to reason or accept something. That may be true, or partly true, but it may be that she just cannot.

For what it's worth, I have been there and done that with own mother, before her diagnosis, and it was incredibly difficult and frustrating and awful, and you have my sympathy. But I didn't have another ill parent in the mix, as you do. As you say, for your father's sake, you cannot afford to wait for a crisis.

So I wouldn't suggest anything to your mum, or give her any choice, I'd just get on with it. By all means have conversation with your dad, when he is up for it, and privately, away from your mother. Get your dad to give permission for you to talk to the GP about his care, and then address your concerns with the GP. And remember that even if the GP can't discuss something with you without permission, they can always listen to what you have to say. You can document everything that happens and then provide that to the GP and also have it for Social Services.

Others here will know more about the UK system but at a minimum, I think your dad is entitled to a carers assessment. I'm not sure where you start but perhaps with social services? Others here can point you in the right direction.

And I hate to give you more tasks for your to-do list, but if you don't have power of attorney (both for health and welfare and finances) sorted for both your parents, I'd get on that as well. I fear you will need it sooner rather than later.

Again, I'm sorry to hear about your situation, and hope you are able to get some help and support sorted out. Best wishes to you and your family.

 

[Rosettastone57]

Hi tts502,
I beleive there's no chance of her going anywhere near a medical professional. That's the sticking point!
Mum went to the GP (after 7 years of persuasion) for a "general check-up" after DD wrote to the GP about her behaviours. The GP told her that she shows symptoms of dementia and referral to a memory clinic was made. This is where the heels dug in. "What to doctors know anyway?" "I'm just not going, I don't trust doctors." So without the tests - no diagnosis - no support services.

Hi with my mother-in-law the memory clinic came to her home to do the tests this in fact was arranged not by me but by the GP because she was already virtually housebound . I was present during the tests with my mother in Law's consent so it then gave me an idea of what the memory issues were. At that particular time I didn't have lasting power of attorney over her but as mother-in-law had given her consent for me to be present my name was always put on the medical documents and letters thereafter. This meant that I was then included in decision making.

I'm afraid as others have said you just have to be persistent and arrange these sort of things whether the person with dementia likes it or not . They are not able to make suitable decisions for their own health and welfare and I'm afraid that we have to do it for them . Sometimes that means being a little deceitful and just arranging the memory clinic if possible to come to them even if it means telling them that it's just a simple check that everyone over a certain age gets.

I arranged for the continence clinic to come to mother-in-law by talking to the GP , giving my concerns and then telling mother-in-law that a district nurse would be coming to visit which would be normal for anyone over 90.
She wasn't happy of course but I persisted anyway whether she liked it or not. Now both my husband and I tell her that although we may listen to her views we are the people in charge.

 

[Steve2427]

Thanks for so much support and advise in such a short time.
There're a few ideas which we've already tried and a few we haven't.

Until Dad can get to the GP and/or social services...

Is there any help/support out there for a carer of someone who's blocking a diagnosis being made?

All the support groups and services out there seem to be for patients with their carers, none for carers one their own because their person they care for is in denial (behavioural or medical)

 

[Risa]

Hi Risa,
Doesn't setting up an LPA require the person's consent?
I did ask her last year, but that went down really badly, so no consent.

We do, however, have the LPA over financial and property affairs already set up from years ago when they (parents) amended their wills.

Sorry to appear negative, I welcome all suggestions.

Yes it does. Ironically my Mum's distrust of medics worked in our favour as she would always trust family ahead of doctors so she wanted us to have control if she wasn't in a situation where she could make her wishes known.

Don't give up with trying to get the Health LPA signed - sometimes you just have to wait for the right moment.

 

[Ng1935]

LPA for health and welfare

Hi all

Sorry to hijack this thread, I'm new to forums but myself and my sisters are reaching new lows. It's heartbreaking reading these posts as it's just so appalling how little actual formal support there is for people with altzhimers when things go wrong

....anyway I just wanted to say I feel your pain.

My question is if anyone knows, if an LPA for health and welfare is registered with a GP would the practice assume that the donor has lost capacity? I can't seem to find an answer.

Thanks and hang on in there people

 

[Rosettastone57]

Hi all

Sorry to hijack this thread, I'm new to forums but myself and my sisters are reaching new lows. It's heartbreaking reading these posts as it's just so appalling how little actual formal support there is for people with altzhimers when things go wrong

....anyway I just wanted to say I feel your pain.

My question is if anyone knows, if an LPA for health and welfare is registered with a GP would the practice assume that the donor has lost capacity? I can't seem to find an answer.

Thanks and hang on in there people

Others may have better advice but I don't think so. I registered LPA at GP for MIL. Although I was told nurse was going out to see her it was left to MIL to see her on her own and give her decision about continence products

 

[Ng1935]

Others may have better advice but I don't think so. I registered LPA at GP for MIL. Although I was told nurse was going out to see her it was left to MIL to see her on her own and give her decision about continence products

Thank you, much appreciated