My partner refuses further tests

[Gittel]

My husband has had an MRI scan and the memory tests that showed mild cognitive changes but were inconclusive. The specialist has offered a further different scan or a lumbar puncture for a more definitive diagnosis. But he doesn’t want them and has just picked up in the word ‘mild’ and just is going ‘to try strategies to improve his memory’ himself.
I am sure he has Alzheimer’s (his father, uncle and aunt all had it) and I’ve seen his mental decline. When he had the online consultation a couple of days ago he wouldn’t have me in the room and I had to listen from outside the door… he wasted the appointment talking about himself and not asking questions.. I went in to see the scan and to ask questions at the end, much to his annoyance. He hadn’t told the consultant that he has daily depression which is a sign of dementia and had clearly played down his symptoms to her.
I am the kind of person who would want the tests and to know so I could plan ahead. I find his attitude selfish as if this has no impact on my life.

 

[canary]

Hello @Gittel and welcome to Talking Point.

Im afraid that this reaction is very very common with dementia.
Actually it isnt usually selfishness, its usually because they have lost/are losing insight into their own condition and genuinely think that things are not that bad - a symptom of dementia called anosognosia. This can also be combined with denial due to fear.

I have also heard those sort of conversations where the person with dementia tries to control them and only talk about themselves, many many times. It is part of a phenomenon known on here as "Host Mode" (aka Showtiming). This is the most annoying phenomenon known to man where the person with dementia can (probably subconsciously) suppress their dementia symptoms for short periods of time when faced with authority figures (doctors, SWs, police etc) or in certain social situations, meeting strangers or other family members. This means that the person they are meeting is not aware of how bad it usually is. Even when mum was at middle stage dementia she could convince people who only met her occasionally that there was very little wrong with her. They cant do it gor long, though and it takes a lot of effort, so once the other person has gone, they are left very tired.

I know that your husband has refused other tests, but do you have another appointment? If so, I would recommend that you write a letter to the memory clinic outlining all your concerns and send it in a few days before the appointment, or hand it discretely to the receptionist or nurse when you first arrive so that they are aware of your concerns before he is seen.

 

[Suesue.G.]

Morning Gittel. Welcome to this Forum. The Alzheimers Society recommended it to me and I have found it to be a lifeline. My OH was exactly the same, to start with. He latched onto "mild" and wasn't interested in any more discussion. Having known him for 50 years it was obvious, to me, that things hadn't been right for a couple of years, but he wasn't acknowledging it. One thing he did agree on, was that he needed to stop driving! He said it was because he was fed up with driving and wanted to let me do it. With my OH, it has been a kind of waiting game. I started to write notes about his behaviour so that I could see a definite pattern. He had an awful lot of falls , nearly every day, and it was this that prompted his decision to let me accompany him to the doctor, to "listern in" to the consultation. Once he trusted me it became easier to offer my observations and for the doctor to get a more accurate picture of his condition. All I can say is, try to keep calm and take it slowly. My OH is, was, a stubborn, proud man and he was not prepared to accept that he wasn't well. I can see his point, as the diagnosis of Alzheimers or Dementia, he has both, is not an easy thing to deal with. If you haven't , already, contact the Alzheimers Society. They are so helpful. Good luck. The people on this forum are a great support. I look in most days. It helps to know you are not alone

 

[Sue741215]

I am sorry to hear of your situation and as someone who is further on in a similar situation you have my sympathy. I recognise the selfishness and the talking about himself in medical consultations - these are part of the symptoms and accepting this may or may not make it easier to bear. I, like you, am a planner, and I continue to plan behind the scenes. Sometimes you have to leave things be for a while and go back to them when you can. I delayed for a year or so (partly due to Covid) after first diagnosis then got the doctor to call him in for a general checkup which led to a further scan. My advice would be to do the things you enjoy together while you can, keep up friendships with and separate from him, try not to sweat the small stuff and be prepared to lie where it is in his best interests. I wish you all the best.

 

[northumbrian_k]

Hi @Gittel and welcome to Dementia Talking Point. You will find this a supportive community that I hope will help you.

When my wife received an appointment letter from the memory clinic it suggested that a member of the family should go with her. I could do that, I said, she didn't have to ask her sister. By that time her 'hostess mode' did not last long, so me being in the room with her probably made little difference to the outcome. But it did mean that 1 of us at least took in what was said, what it meant, and what would happen next.

It may be hard to achieve (because of his reluctance) - and some professionals may not engage with you - but being present during any further interviews and tests will help you both. At the memory clinic and GP appointments my wife was always asked if she was happy for me to be there and, if necessary, whether I could be asked to give any further information. If this is not possible for you, sending a note of your concerns in advance is the next best thing.

 

[Violet Jane]

Anyone in health and social care who deals with people with dementia regularly is familiar with them talking about what they want to rather than answering questions. I think that the term that is used for this is ‘tangential’. My elderly friend was described thus.

 

[Newanne]

My heart goes out to you, I do understand how difficult it is. I'm at the beginning of this journey with my husband who will not see a doctor or admit there is a problem. I have seen changes in him for 3/4 years with not much change, but the last few months have been difficult and I had to sit him down and explain what he had been doing. He listened say, "oh" now and again. I was truthful, (I had been keeping notes) I cried, he was cold, at the end he just said, "well I must be worse than I thought. Come on then we really must get started on cutting the hedge." it's not been mentioned since. He forgets he's forgotten, I remind, I smooth tense situations, I make excuses. He will not see a doctor, we are in limbo. He can and does say things to other people that just are not true, things that put me down. It's a lonely business but we have to carry on, what's the alternative? This site has been a wonderful support. I would recommend you keep using it. Love and hugs x

 

[fromnz123]

This time last year we were at the beginning of my husband’s assessment, he was adamant there was nothing wrong with him, he said he didn’t need an MRI, my answer to that was that it’s not just about him!
The day before his MRI he told me that it had been cancelled, I phoned the memory clinic, and they told me that he had called them 5 minutes before to say it was inconvenient and that he wouldn’t be attending.

When I asked him why he had cancelled, he answered “there’s nothing wrong with me”, at this point I lost it, it had been my 60th birthday 10 days before, I asked him what had he bought me, he eventually said “that perfume you like Chanel” I got the bottle of perfume showed him and asked if this was it, he agreed it was, I asked him to read it , he thought he had bought Chanel No 5, what he had bought was “Chamelle No5”, some cheap knockoff off of eBay. When I pointed out that it wasn’t Chanel , he said “how was I supposed to know”, at this point I said to him this is why you need to go.
Somehow I got him to that appointment and all the other appointments he needed to get a diagnosis!