What to do next... I want to help my wife "shake the tree"

Alfie1

Registered User
Oct 19, 2015
3
0
I'm new here and probably posted this to the wrong place earlier...

My father-in-law has finally been diagnosed with Alzheimer's after 12-18 months of cancelled appointments, changes in Consultant and unbelievably slow response times. During this time he has deteriorated but I guess we will never know what difference it would have made to have know a year ago. He is only 67 and luckily he is a very bright man (and I suspect he has been affected for many years but has hidden it well by being a copious note taker). Now we are waiting for a formal assessment but the appointment is not for another 6 weeks or so. We want to help him make decisions but feel we are constantly putting off decision making while we await the outcome of one test or another.

He is still very independant and last week he went abroad to his timeshare on holiday. We got a phone call from a Spanish hospital to say he had had a fall and was very confused (no one knows what happened, least of all him, but he's got stitches in the back of his head). All sorts of silly little things then went wrong (went to get his flight home without his passport, lost his phone etc, etc).

My wife is pregnant and we also have a toddler and she is understandably getting very distressed. I haven't helped by saying that her and her brother need to take control of the situation and stop continually waiting for other people before something dreadful happens to him.

So the reason I'm posting on here is that we need to find someone who can help us understand what the short and medium term future is likely to look like for him so that we can make good decisions while we can still have sensible (albeit somewhat laboured) conversations with him about what he would ideally like to happen in certain circumstances; where and how he lives being the real biggies. Understandably this latest incident has scared us.

I have seen a number of references to paying for an assessment privately but I don't really know who would do this, what we would get or where to start the process. Can anyone give me more info?
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
It does t matter who does the assessment they cannot predict the future of dementia. There are many things which people have in common, plenty which are unpredictable and some which you can/cannot learn to live with.

Travelling by himself is not a good idea anymore if his short term memory is bad. I am sure my husband would say he could do it but he gets lost by the time he is at the end of the street.

Go the route of GP, memory test, memory clinic, brain scan, ECG if necessary, medication if suitable. Encourage him to attend Alz groups for company and stimulation eg film, singing, football memories, allotments - find out what's on in your area by ringing them up. Keep him involved in as much activity as you can but I am afraid you cannot prevent the inevitable in the long run.

If someone tries to sell you the benefits of private consultation, treatment, miracle foods etc be sceptical.
 

Tin

Registered User
May 18, 2014
4,820
0
UK
You are right, someone does need to take control, The future for a Dementia sufferer cannot really be predicted. Maybe it would be a good idea to list whats most important to sort now, most people in this position start with sorting PofA, if there is still time and your father in law is agreeable. In a way one decision has already been made and that is that he cannot travel abroad on his own anymore, so what to do with the time share. Next on your list, start to sort some kind of activity suitable to his condition, are any of his friends willing to help in this area? I know it is easier said than done, but just try to discuss things one by one, don't 'overload' yourselves and importantly father in law. Only a suggestion, but someone should attend all appointments with him now.

Any questions, just keep coming back here.
 

Alfie1

Registered User
Oct 19, 2015
3
0
Thanks marionq and Tin

I sorted LPA's a while back and my brother-in-law is now managing father-in-law's finances whilst my wife attends as many appointments as possible with him.

I guess what is frustrating is that no one seems to be able to tell us any practical things that might help him in the future as his speech deteriorates (over and above short term memory, this is the biggie as for the moment all his other faculties seem fine).

We can't seem to get any sensible information on how Alzheimer's actually works; does it start in one part of the brain and gradually expands? For example, he is an accomplished pianist and his playing doesn't appear to be affected so I'm assuming this is in a different part of the brain that is currently unaffected so can we maybe train him to use his music to help communication in the future? Also his spoken French was always good... is this in a different part of the brain that might still be ok?

Or does no one in the medical community know this kind of stuff yet?
 

Slugsta

Registered User
Aug 25, 2015
2,758
0
South coast of England
Hi Alfie and welcome to TP.

Although the 'man in the street' tends to use the words 'dementia' and 'Alzheimer's' interchangeably, Alzheimer's is actually just one form of dementia. Each form tends to start in slightly different ways depending on where and how the brain is affected.

There is one type of dementia in particular, called fronto-temporal (or sometimes temporo- frontal)that often occurs in younger people and seems to affect speech early (please note that I am not trying to 'diagnose' your FIL!). The info on this site suggests getting a speech and language therapist involved to look at different forms of communication, is that something you might want to consider?

I do hope you get some answers soon. It won't change anything in practice but at least you will know the name of the beast!
 

Lindy50

Registered User
Dec 11, 2013
5,242
0
Cotswolds
Hi Alfie and welcome to TP :)

As others have mentioned, the thing with dementia is that it affects everyone differently. So, really no amount of tests or diagnoses will be enough to completely decide how your FIL lives his everyday life. And of course, every family is different in the type and amount of support it can offer. So, I think that so long as you have the basics covered (POA and medical route) - which you have - then it's important to respond to your FIL as an individual. Try to appreciate what he can do - like play the piano - while compensating for what he can't - like organising living arrangements.

It's a really, really difficult balance to strike, as we all know. Your wife and children are lucky that you are so proactive and supportive. I wish all of you all the luck in the world.

Keep posting :)

Lindy xx

PS Have you heard of Admiral Nurses? They are specialist dementia nurses, employed by a charity. There's not a full UK-wide service yet but I've heard that their helpline is very good.
 
Last edited:

DMac

Registered User
Jul 18, 2015
535
0
Surrey, UK
So the reason I'm posting on here is that we need to find someone who can help us understand what the short and medium term future is likely to look like for him so that we can make good decisions while we can still have sensible (albeit somewhat laboured) conversations with him about what he would ideally like to happen in certain circumstances; where and how he lives being the real biggies. Understandably this latest incident has scared us.

Hi Alfie,

I'm relatively new to the forum too, as I've only been in my full-time caring role for 4 months. Someone gave me some very good advice in response to my very first post, which was, in essence, to pay attention to matters of safety, and just do whatever works best for you and him for everything else.

For me, the matter of paramount importance at that time was to stop my mother-in-law driving. Due to her condition, she had no concept of her diminished ability to drive, and was, quite honestly, a danger to herself and others. That was the immediate matter to be resolved - which we did, firstly by disabling her car, then (eventually) by my father-in-law expressing a wish that it should be sold. In your case, if your father-in-law cannot be prevented or dissuaded from travelling to Spain, then I would advise you ensure he is accompanied on all future trips - clearly he should not travel alone. Perhaps you can persuade a relative or friend to travel with him?

Apart from that, what other safety risks do you think he faces? Does he cook for himself, for example? Might he leave a hob switched on and cause a fire? You and your family know his living arrangements and preferences better than anyone, so really, you are best placed to carry out your own assessment of the risks he faces. That will then inform what precautions you put in place. For my m-in-law and f-in-law, we have a community alarm supplied by the local Council, which is linked to pendant alarms and fire sensors. As a family, we operate a loose rota system, so that one of us always visits them at least once every day, and ensures they have eaten (and that their cats are fed!). F-in-law has an external carer visiting him every morning to get him washed and dressed, and my sister-in-law does his night-time routine. M-in-law is quite fiercely independent, so we give her small amounts of cash so that she can go to the shops. Yes, she might forget the way home, but we are living with that risk for now. So, as another poster has said, it's all about balancing their need for independence, and your need to ensure they are safe. It's a tricky one, but i feel sure you will find the right way. Keep asking, if you are not sure.

Good luck. xx
 

jugglingmum

Registered User
Jan 5, 2014
7,085
0
Chester
One bit of advice which helped me alot which I read on TP is that dementia is like a set of bookshelves, and some books have fallen from the top, but some fall from the middle and the bottom as well. This has helped me explain it to others as well, as you never know which bit of the brain is going to stop working properly next, although more and more keep falling.

The other thing I have learnt from TP (and this hasn't happened to me yet) is that infections can make things worse but once the infection is clear things can and do get better again.

Until I came across dementia (Alz in my mum's case) I assumed it was about memory loss, but lack of processing skills and logic cause as many, if not more, difficulties in going about daily life.