Severe cerebral atrophy

[charlie10]

My FiL was in hospital after a fall.....amongst the other tests they did was a CT scan and on his discharge report it mentioned 'severe cerebral atrophy'. He was treated for pneumonia and ulcers and then sent home, but no-one has said anything about the brain scan and its implications. I live overseas and the family member who keeps an eye on him (he lives alone) does a good job but doesn't live nearby and also doesn't want to know anything medical, so hasn't asked.

FiL, on the phone, sounds fairly normal, especially for his age (early 90s) but looking back on it there have been slight oddities over the past 2 or 3 years....things you'd put down to him not having his hearing aid in, or just crossed wires on an international phone call. Since he came out of hospital he has a carer in the morning who helps him wash his back (he can't access shower upstairs), and get dressed. He can only walk with a zimmer since his hospital stay, not sure if that's cos of balance or pain from multiple leg ulcers. He says he cooks himself meals every day....breakfast one day was half a tin of soup, porridge, and sausage and bacon (told us he had 2 courses....just little things that don't seem quite 'right')

We are trying to reconcile his apparently very minor behavioural symptoms with the 'severe' picture from the scan which seems to indicate end stage (guessing at VaD as he has CAD and severe arterial peripheral disease). I'm wondering if he could be very successfully 'hosting' when we ring or he has visitors, nurse, carer as they are only there for 2-3 hours max, and usually much less. Does this sound likely? We're discussing if we could possibly get a referral to the Memory clinic, also POA, but know he would be very against both, and we would have to coach the family member who is not only reluctant but also unable to take any more time off work for this. We're trying to be supportive and also to get a better idea of the situation and how fast it might move....if he's at the beginning we've hopefully got time to arrange things, but if he is already end stage we might not have much time to get our heads round it and investigate ways of helping. Trying not to be 'helicopters' here.....feeling guilty we can't do more than research and send info over. Also feel a bit funny about even thinking he has dementia, as no-one else has even suggested it.

If anyone can shed any light on this (I know stages are really hard to guess, but that CT has rattled us a bit) I'd be really grateful Thank you

 

[karaokePete]

Hello @charlie10, you are welcome here.

I think the first step is contact with the GP for a diagnosis. Perhaps the appointment would be accepted if your FiL was told it is a check-up after the hospital stay. The GP could be primed beforehand about your concerns.

You seem to be doing a bit of research and to help this here’s a link to the information rich Publication List https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

 

[charlie10]

thank you for the welcome and the link @karaokePete .......the GP would be a good place to start but we don't know who it is and the family member looking after him is quite averse to doing anything that might upset him. It's difficult trying to influence anything from a distance when the 'carer' is unable/unwilling to think that there might be something wrong....hence me trying to get a bit more info so that we can convince him. Basically the scan results don't seem to correlate with the behaviour.....are scans ever wrong?

If we push too hard on getting a diagnosis before we have something more convincing, we run the risk of antagonising the 'carer' and might be totally out of the loop

 

[karaokePete]

It is possible to have brain pathology but not show much, if anything, in the way of dementia symptoms. This can be due to a variety of factors. If you do an internet search for ' the nuns study,dementia', you should be able to find some interesting info on this.

It is also possible that, as you are thinking, 'hosting' is going on when you talk to your FiL.

I know it will be difficult from a distance but I still think finding the GP will be a start.

 

[Wifenotcarer]

Speaking from 'the carer's' point of view an actual diagnosis is not much use, other than as a passport to benefits and additional help. If seeking POA then a formal diagnosis, if it implies a lack of capacity, can be a barrier to obtaining the POA. Given that there is no cure or type specific medication a firm diagnosis is neither here nor there - what matters is to ensure that FIL is kept safe and has care commensurate with his needs. Equally important is that the main carer is supported and made to feel that he/she is doing a grand job.

Something else to consider is that if FIL's general health is the main concern then all funding for medical assistance, including temporary or permanent residential care in a Nursing Home will be met by the NHS. On the other hand if FIL needs carers coming in daily or care in a residential facility for a Dementia type illness, then he will be expected to pay for all of that until he runs out of money.

I appreciate how frustrating it must be for you - anxious to help but a million miles away BUT and it is a big BUT, no amount of researching or understanding of the academic stuff will help in the day to day life of the Person with (suspected) Dementia nor the primary carer because each individual will have different problems, needs and issues dependant on their mental and physical health, their personality, their financial situation and their age at onset. I am sorry to say this but being honest - If I were the person with the main care responsibility, I would be getting fed-up with your questions and demands for me to do more (have you any conception of the difficulties involved in getting GP appointments, persuading FIL to go, taking time off to accompany him, etc. etc?) Perhaps better to concentrate on getting more professional carers involved to do some cooking, shopping, cleaning and generally keep an eye on things as they progress.

 

[Sirena]

I agree with the previous poster that getting a diagnosis would not necessarily change anything. It sounds as if your FIL already has daily care and they can flag up any additional worries to the GP. The important thing is for the GP to have a contact, either yourselves or the other relative.

Does the relative actually visit him regularly - or at all? S/he should be able to tell if, for example, he is eating properly - has he lost weight? Is he able to make a cup of tea for him/her? My mother always said she was managing fine but she lost the life skills to make herself toast (she set the grill on fire) or even make a cup of tea. At that point, carers need to ensure FIL eats and drinks, and is safe to be left alone at home.

If you want to try to take out POA, that is entirely separate from a diagnosis. Anyone can do this - me and my OH did POAs for each other years ago. So that would be a matter between you and FIL.

 

[charlie10]

@Wifenotcarer thank you for your thoughtful reply.....I hadn't thought about the pitfalls of getting a diagnosis before we have POA..............shows I still have a lot to learn! We are extremely aware of the stress on the family member who sees him twice a week (he has organised tradesmen for a couple of urgent house repairs that my husband has said are urgent, but his visits are mainly social, trip to supermarket, no personal care) and so we limit our questions about the state of FiL to the bare minimum, and are also trying to work out what needs to be done before we actually mention it. Having read a lot of posts from carers who receive well meaning advice from the 'invisibles' (unfortunately us) I am all too well aware it is easy for us to ask for appointments to be made etc for the welfare of the pwd but which make the carer's life a logistical nightmare. Having read and researched the advice and experience on this forum I am aware of certain important things that need to be done (like chasing up outpatient appts after his hospital visit) but we can't do it ourselves as we have no information as to who to contact (not for want of asking) and with privacy laws today it's almost impossible to do anything by phone/without POA!

@Sirena I do agree the ideal thing would be for 'carer' to be a contact for the GP but he is very much head in the sand and seems to be content to let FiL dictate how things will proceed....he doesn't like confrontation and FiL is stubbornly independent! Consequently we only know, or don't know, as much as he does, which is little, and why I am trying to piece things together. We can only afford one trip home (we are a VERY long way away) which is why we're trying to get an idea of whether he is fairly early stages (behaviour) or end stage (scan). We also have concerns about his carers (funded privately)from what FiL says but family member shrugs it off, they are coming so what are we worrying about. Perhaps I'm overthinking it.....too much research, but I hate to think we're not doing our best for both of them

@karaokePete .....brilliant, thank you for the tip about the nun's study.....I thought I'd exhausted every search term and had come up with very little.....onto it now!

 

[Sirena]

I'm not sure there is any more you can do, given FIL and nearby relative both seem resistant. They are very unlikely to agree to a memory clinic visit, and even if he got a diagnosis it doesn't mean anything would change in terms of his daily care.

I had to arrange my mother's care at a distance and my contact with her was mainly over the phone. It became very obvious when she deteriorated. To begin with we could have a limited conversation about her meals/the weather/the cat which more or less made sense. As time went on, I could tell she was not engaged with the conversation and I had to do 90% of the talking, and she did not understand a simple instruction to give the phone to the carer. So you should be able to get a sense of how things are going, regardless of 'hosting'.