What questions to ask Consultant?

[Breifne21]

So we've finally got the appointment for my uncle with a geriatric specialist but we had to go private. So, if nothing, we should have an official diagnosis soon. It's clear from his symptoms (and quiet advice whispered from my doctor cousin) that he is in the mid stages at least, if not the start of the end stage.

The issue is that my aunt has....ideas. A major problem to date has been him controlling what she can say. So, to combat this, we've written up a detailed breakdown of his symptoms and we plan to give this to the consultant.

However, my aunt is still in denial about my uncle and believes that if he gets the right medication, he will improve and she'll have her husband back again. Thus, she actually has left out huge chunks of his symptoms from the description we wrote because she " doesn't want him written off that there's no drugs to help him". On top of this, she asked my uncle's sister to go to the appointment with him instead of me because his sister has a reassuring and stablising effect on him, which is fine, but it means that I, the person who is actually doing the full time care, won't find out anything save what she chooses to share with me. I understand their wish for privacy, but this is my life now, and it effects how I can live for the next five or ten years, it also effects how I can help my uncle manage the progression of the disease.

We've come to the compromise that she will give the consultant leave to speak with me by phone or email. I know this is bad but I actually intend on emailing the consultant before the appointment and filling her in on the missing details and describing the care situation as honestly and in as much detail as possible, without my aunt's knowledge.

I'm going to send a couple of questions to the consultant as well. At the moment they are;
(1) what stage is he in (2) what's his life expectancy (3) what will his care look like in six months to a year and a half from now (4) do we need to start making adjustments to the house to help him (5) what therapies can I use at home to help him in his symptoms.

I wondered if you guys had any questions you think I should add? Thanks.

 

[Jacaranda16]

Firstly may I say how lucky your Aunt is to have you onboard and I truly hope that you are not ignored nor shut out of any negotiations. It isn't fair! Full stop. If you are the one that the responsibility is falling on , I'm sorry, you have first voice in all this. I wish you good luck and bless you.

 

[Breifne21]

Firstly may I say how lucky your Aunt is to have you onboard and I truly hope that you are not ignored nor shut out of any negotiations. It isn't fair! Full stop. If you are the one that the responsibility is falling on , I'm sorry, you have first voice in all this. I wish you good luck and bless you.

Ah thanks but she's not doing it out of a place of malice, only fear. They don't have kids and have been married for 50 years. He's all she has and she's finding it very difficult that he's slipping away.

 

[Sarasa]

Hi @Breifne21 and welcome to Dementia Talking Point. I think sending the consultant your list of observations about your uncle is a good idea, though if his examination is thorough he'll probably pick up on things not being quite as your aunt says. Depending on the diagnosis your uncle may be prescribed drugs such as donepezil. None of the drugs will slow down or reverse dementia, assuming that is what the diagnosis is, but they can alleviate some of the symptoms for a while.
As to the questions you want to ask. This The seven stages of Alzheimer's Disease might give you a bit of an idea what to expect, but people don't necessarily follow the same protectory as to symptoms. As to how long your uncle might live I think a lot of that will depend on his underlying health. My mum is pretty much in the last stages of dementia, but her underlying health is good so I wouldn't be surprised if she lives a good few more years, on the other hand she could die tomorrow. As to things around the house, I'd try to get in extra help for you and your aunt and get your uncle used to carers. You could ask for an occupational therapist to visit, but again you might have to wait a while. As for therapies, I'm not sure that there is anything that really works, but if there are things your uncle enjoys concentrate on them. My mum for instance still very much enjoys music, and until her mobility took a nose-drive would happily dance around to songs from musicals.
Now that you've found us have a look round this very friendly and supportive site, you'll find lots of help and advice here.

 

[Duggies-girl]

I'm going to send a couple of questions to the consultant as well. At the moment they are;
(1) what stage is he in (2) what's his life expectancy (3) what will his care look like in six months to a year and a half from now (4) do we need to start making adjustments to the house to help him (5) what therapies can I use at home to help him in his symptoms.

I wondered if you guys had any questions you think I should add? Thanks.

Questions 1 - 3 are impossible to answer.

Question 4 is a good question but it is still difficult to answer because everyone declines at different rates and in different ways. Some people need aids and adjustments very quickly while others bumble along for years without needing any. As for therapies I don't know of any that actually work other than trying to keep any interest going but this is sometimes difficult to do.

Stages are just stages and they have no set timeline. We all ask these questions and the big one is how long but there is no answer.

A diagnosis is useful but taking it day by day was the only way I managed with dad. I found that keeping dad healthy was most important because any illness can quickly cause deterioration of the dementia and you don't want that.

 

[Breifne21]

Questions 1 - 3 are impossible to answer.

Question 4 is a good question but it is still difficult to answer because everyone declines at different rates and in different ways. Some people need aids and adjustments very quickly while others bumble along for years without needing any. As for therapies I don't know of any that actually work other than trying to keep any interest going but this is sometimes difficult to do.

Stages are just stages and they have no set timeline. We all ask these questions and the big one is how long but there is no answer.

A diagnosis is useful but taking it day by day was the only way I managed with dad. I found that keeping dad healthy was most important because any illness can quickly cause deterioration of the dementia and you don't want that.

Thanks for your insight.
I just need broad estimates and a very rough guide to help plan for the future. I know that nothing is definite and that every case is different.
At the end of the day, I know that it's a day by day thing. Already, he has good days and bad days, good hours and bad hours and ultimately that's what decides what his care is like. Nonetheless, having a broad idea of where he is will help.

 

[clare77]

Once you know what type of dementia he has you’ll have more of an idea as to the progression you can expect. There are so many types it’s impossible to predict. For example Alzheimer’s tends to be more of a steady decline, whereas vascular dementia is more of a stepped decline where they plateau then decline then plateau again. The plateaus can be anywhere from a few weeks to months or even years. It’s all so individual, but you’ll have more of an idea what you’re dealing with once you have the diagnosis.

 

[canary]

I'm going to send a couple of questions to the consultant as well. At the moment they are;
(1) what stage is he in (2) what's his life expectancy (3) what will his care look like in six months to a year and a half from now

When mum was diagnosed I asked the consultant exactly the same. He was very nice about it and very gentle in his approach to mum, but in answer to these questions he basically shrugged and said (and I quote) "How long is a piece of string?"

I expect that, like me, you want to be proactive and plan for the future. The trouble is that dementia doesnt do predictable. Its impossible to plan for all eventualities and you might end up planning for something that never happens and then be totally blindsided by something that you had never considered. All you can do is be aware of different possible scenarios , so you know what might happen, and then just deal with what is in front of you.

 

[LouiseW]

Hi,

I know how hard it is trying to organise your life around a loved one's dementia and the need to have some idea of how long this is going to go on for.......... and the reality that it could be 6 months it could be 15 years !

After coming to terms with this (it took a while believe me) I settled on making sure that whatever changes I made to my life in order to be there for my Dad - that they were changes that were sustainable for me and my husband over a 15 year period.

This for us has meant easing back on trying to contol everything and prevent every single mishap and getting as much care and help in as possible.

I'm now OK with the fact that there is alot iof info that I just don't get due to Dad forgetting or professionals not telling me - and now I'm not doing myself in trying to make sense out of everything I have tonnes more energy for cuddles, laughs and trips out to football, steam trains etc and dealing with the inevitable crisies that occur from time to time.

Good luck and I hope you find what works for you in this very unpredictable situation.