Diagnosing a problem when sufferer refuses tests

[Tim Haynes]

Hello there community!

My mother has alzheimers and is in a home in Devon. She has started objecting to anyone helping her and more importantly preventing doctors/nurses taking blood and urine tests to find out why she is getting weaker. I am sure she does not really understand why she is refusing.

What can be done to get these tests so we all know (including the home) what is wrong with her (eg maybe she has had a minor stroke etc.)

Please do let us know what to do?

Thanks,

Tim Haynes

 

[muse]

Hi Tim
I don't really have an answer as every case is different, but just wanted to let you know that I'm familiar with this dilemma. Tests, especially if they involve hospital stays or anaesthetics, can be very distressing for anybody, even more so for someone who doesn't really understand the explanations or the purpose. It depends very much on your mother's age and general health. If she refuses blood and urine tests, maybe she just doesn't want a result which would lead to distressing treatment.

My husband has dementia and has deteriorated quite rapidly since Christmas. He's also had low-grade lymphoma for some time (stable and not needing treatment). In February, his consultant thought he could feel a little enlargement in his lower abdomen. The only way to determine whether the lymphoma had become more active would have been a biopsy. My husband didn't have any symptoms, and was dead against anything that involved hospital/anaesthetic. He said "I'll go back if I get any symptoms". I had to support him in this. My thinking was, why put him through all this and then the answer might be that everything is as before? And if the answer was that he needed treatment, would chemotherapy really improve his quality of life? Any side effects would distress him a great deal because he wouldn't understand what was going on.

I hope this is just a phase your mother is going through and that you or the CH can get her to accept the simple tests. It might just be a need for antibiotics

I'm sure you'll get some more, less rambling, answers to your post.

Good luck - Kathy

 

[mowood]

Hi Tim
I'm so glad you've raised this subject because it's one I'm battling with too.

My mum has temporal arteritis which has resulted in her losing all her sight and in order to monitor the condition, blood tests are required.

We've now reached the stage with mum's dementia where she just screams at anyone who tries to help her (I posted yesterday about our experience with the chiropodist) and refuses all care. She won't allow the district nurses to dress the pressure sores on her bottom and the last time the phlebotomist came out, she told her to bu**er off! No amount of cajoling or persuading would change her mind and it's just not safe to try to 'hold her down' even if anyone would agree to do it.

The treatment for mum's condition is steroid tablets but we don't know what dose to give her without the blood test, so we're just guessing. The gp allows me to decide what dose to give her, it's on a reducing basis, but sometimes I feel at a loss to know what to do for the best. I don't want to under-medicate her but neither do I want to over-medicate her.

It's a tough one and I hope someone will be able to offer advice.

Best wishes.

 

[Tender Face]

Hello Tim - two-fold answer - my mother never refused tests (I think she liked the attention!)but I beat myself up now I put her through some we might have avoided ……

I do. Hate them. With a fervour. Someone comes within an inch of me with a syringe to take bloods …. Well, they never get that close ……. I call myself a ‘reverse hypochondriac’ because I refuse to believe anything can possibly be seriously wrong. It is my right to ignore medical problems and my right to refuse to even seek out tests. Stupid? Maybe. But that’s my choice and based on my own beliefs and I have every right to them, as does everyone, including thinking very differently.

Should I lose capacity, those who need to know that is how I am, and if they enforced tests on me which I wouldn’t have chosen for myself would be a travesty……..

Of course, we want to do our best …. but the ‘best’ has to be following the wishes of the person were they able to still express them themselves ……

If this is out of character for mum - then perhaps I would be suggesting ways and means to secure samples …. But if this was ‘modus operandi’ previously … then she is merely managing to express her rights ……

The GMC guidelines around consent and incapacity ….. including investigative procedures may be of interest ….. http://www.gmc-uk.org/guidance/ethi...e_making_decisions_patient_lacks_capacity.asp

I know the desperation of wanting to know ‘what’s wrong?’ … with hindsight, just my own personal experience, it was perhaps for my benefit not my mother’s? That is the critical balance so hard to achieve. Are the medics supportive? I found mum's GPs hugely aware of my own feelings as well as my mother's rights which was enormous support.

Best wishes, Karen, x

 

[Amanda1954]

Hi Tim

It's a tough one I know. And there aren't really any answers that I know of. As has already been said, each person is different. Personally, my feeling is that when a person has dementia there's no way of trying to cajole or use reason. The very nature of dementia is that there is no rationality to it.

On a lighter note, my mum-in-law was on warfarin and therefore had to have regular blood tests to establish dosage, but after a while she suddenly refused to have any more blood taken. She claimed they were selling her blood as it was a very rare type! It wasn't, but then she wasn't studying nursing at college when she was 90 either. We had to laugh or we'd have cried.

I hope you find a solution. Best wishes, Amanda

 

[jenniferpa]

Going back to you original post, Tim, I'm not quite sure what blood tests or even something more major would really establish. True, they might tell if she had diabetes or something but they may not show anything. A minor stroke for instance: if she had one or didn't have one there really isn't much in the way of treatment, and neither a blood nor urine test would show anything.

It is possible that she has an infection, though. Any kind of infection can cause a dramatic downturn in the elderly (not just people with dementia). I understand that there is a concern about diagnosing antibiotics when there is no infection, but when it comes to someone like your mother, you may have to be very pushy with the doctor: here is an elderly woman who is XYZ (you fill in the blanks e.g. coughing, wheezing, has strong smelling urine etc) why not try her with a short dose of antibiotics to see if they cause any improvement. Good grief - GPS had them out like candy sometimes to Mothers for their children just to get them out of the surgery (not right of course, but...).

Of course, you may not feel comfortable doing this and if so I totally understand.

Incidentally, welcome to Talking Point.