Dementia Awareness

Robster59 · Feb 11, 2019

A personal update on this. My FiL was formally diagnosed with Vascular Dimentia last week. Whilst he's still allowed to drive, he has to notify the DVLA and we've discussed with the doctor and we doubt he'll be allowed to keep his licence. We couldn't forgive ourselves if he hurt/killed someone in an accident.
His memory is definitely failing and as has been said above, patience is the key. You have to get used to answering the same question time after time. He has to be told when to take his pills and looks for re-assurance on everything he does now from us. He can still get out and about by taxi and goes for a swim to meet "the boys" (average age 80+) four times a week. All we can do is carry on the support. It's easier for me than it is for my other half as it's her father so I try to do as much as I can to take the pressure off her.
We are now looking for support as we can't leave him on his own overnight and it's not fair putting the load on my step-son to come over and look after him, although he's happy to do so.

GB72 · Feb 11, 2019

Father in Laws partner recently passed having suffered from early onset dementia. Hit her before she was 50 and lasted for about 6 years. Simply put, parts of her brain would give up and she would forget something, sometimes it was memory related or something simple until it eventually hit her motor skills. Never witnessed anything so scary in my life.

Just started a new job and every member of staff receives some basic dealing with dementia training, mainly because we may have to deal with clients who suffer, but also there is encouragement to further that training, be involved in Dementia Friends etc.

Lord Tyrion · Feb 11, 2019

Robster59 said:

Good post, best of luck as we are in similar boats here.

One key observation that we have made over the last few months as my MiL gets worse. Never assume that the person can do something they used to be able to even if that something was a central part of their life. They may be able to do part of it, but not all. Some examples, all from my FiL failing to accept this. If left alone she will take no tablets, thinking she has already taken them, or eat them like smarties, thinking over and over that she hasn't taken them. He nearly got a parking ticket the other week as he left her to set the time on the parking disk

. My wife goes to their house for lunch every Thursday. They do shepherds pie every time, baked dry. The MiL makes extra gravy, first time made it cold as she took water from the kettle, forgetting to switch it on. My wife now 'helps' her so that she is still involved but has someone checking she is doing it safely and correctly. I could fill a page with examples as I am sure you could, or soon will be able to.

We involve her when she comes round now as much as possible. If I'm making a cup of tea I will ask her to go pass me the mugs, point towards the correct cupboard, same with the milk, tea bags etc. When I wash the dishes I ask her to dry and put away, showing her where to put them as otherwise she wont remember. It keeps her occupied and involved as she wants to be but doesn't stress her. She doesn't want to be sat in a chair being ignored but we have to work out how to involve her in a way that doesn't add to her stress levels. It becomes a game.

Anyway, best of luck, keep posting. One thing I have discovered going to Dementia Friends / Awareness meetings is that the problems we are facing are the same for everyone in this situation. Sharing the stories can be therapeutic and often funny. You need the humour to release the tension of what is happening. Start a story and you can see others nodding and smiling as they remember it happening in their situation as well.

Driving, take the keys away. We had a fight on that one but got there in the end. The potential there is too horrific for debate.

Hobbit · Feb 11, 2019

Robster59 said:

Ref support in the home, you will be surprised how much is available but you will have to fight tooth and nail for it. We were determined to allow MIL to stay at home until it was patently obvious she couldn't - I guess the decision was made for us by a fall and a broken hip. 8 months later, after finally being discharged from hospital, she went into residential care for the final 4 months.

Speak to Social Services about what they can do to support/fund changes to the home, if it fits your case, as there's plenty they can do. We had a new bathroom/wet room done for MIL. Perhaps the most important thing was the sensors that were fitted throughout the house, linked back to a control centre. For example, one night she got up in the early hours and did a pan of chips then went back to bed whilst the pan was still on the cooker. The sensor had picked up that the cooker was on in the early hours and we were already on our way round there long before it become a serious issue. Same with the shower. She had left it running. Again, we were alerted that water had been running in the bathroom for quite a while. Its hard work getting it all sorted but it does allow them to maintain some independence whilst they can and gives you a break. We also had carers going in 4 times a day, again funded by Social Services.

Good luck.

mikevet · Feb 11, 2019

If anyone over 65 years old would like to contribute to a research programme into prevention/treatment of Alzheimer's disease, a company called Re:Cognition Health is running a 5-8 year programme to assess a possible treatment. It runs from several centres in the UK, and starts with a presentation on types of dementia, including Alzheimer's (which is the most common form), and how their trial works. If you decide to be a part of it, they take a cheek swab for DNA analysis - they are looking for a particular gene configuration which makes it more likely that a person may contract the disease. There is no compulsion, and participants may leave the trial at any point. I attended a session in Guildford in December, and learnt a lot about the causes of dementia. Unfortunately I didn't have the specific gene conformation needed for the trial, so my involvement stopped at that stage. However I was very pleased to discover that things like going into a room and forgetting why, forgetting names, etc are officially considered forgetfulness and not a precursor to dementia!

Robster59 · Feb 11, 2019

Thanks everyone. I know lots of people go through this so it's good to share and discuss. For the driving, we're going through official channels so it won't be us when it is taken away.
Seeing some of the things above directly relate to what we're going through. The fact he lives with us in a granny flat at least means we can keep an eye on him.

I was due to take him to hospital on a Friday and he always frets about these things. Anyway he was in bed about 9:30-10:00pm. At 11:30pm we were awoken by a noise downstairs, so I went down to find he was up, dressed and shaving. He thought it was morning so I persuaded him to go back to bed and when I took him the following day he was so stressed his heartbeat was at 140bpm! We've now got him a talking clock as he struggles with reading clocks as we've had the "early rising" incident twice now.

He also has wrist alarm but didn't wear it in bed, keeping it on the bedside table, until one day he fell getting out, couldn't get up and couldn't alarm. Luckily we were near enough to sort him out but that made him see the need to wear it at all times.

There's lots more but it's funny I was only thinking today we need to find him things to do to keep his mind occupied. I try not to do all things for him but try to get him to do what he can without stressing him out with things he can't handle. But I'm trying to stop him not thinking and relying on us for everything as I don't think that's good for him and try to keep his brain active as much as I safely can/

Lord Tyrion · Feb 11, 2019

We have big timing issues with our MiL. She is anxious all the time, coat's on, wants to leave way before required. We have tried all sorts but that is a tough one to manage. Would an Alexa help in your case? It doesn't in ours but some may find it useful. We got her a special clock which shows the time, day, date etc which was supposed to help but it is shoved in a corner so she doesn't see it

Robster59 · Mar 20, 2020

An update on this linked with the current Covid-19 issues. As I've stated elsewhere, we took the decision over a week ago to basically isolate him. Not on his own but restricted to the house as any contact with someone with Covid-19 could prove fatal. Since the last post, he had his licence taken away shortly afterwards but thankfully he was still able to go to the club as I or the missus could drop him off and there is a very kind man who drops him back.
As I work from home a lot I've tried to take a lot of the pressure off my missus as it's getting to her far more than it is too me. However, there have been times when I have to work away from home and, whilst in the past we could leave him on his own with some lunch ready or a bowl of soup in the oven he could just microwave, she worries that she can't leave him alone for the day. We can't let him near the kitchen as, whilst he thinks he can still cook, we can't trust him with the hob.
And now that he is isolated and not getting out, he's not getting the stimulus he used to, and he is tending to spend more time sitting down and watching TV repeats. (On a different note, why do people when they get to 70+ seem to enjoy watching anything with a good murder in it?

).
I've self isolated with what looks like was now a cold but my missus is now working from home and the strain it is putting on the household is so much higher.
The dementia is getting worse, but slowly. We see a gradual deterioration but people who haven't seem him for a while say they really see a difference.
I'm not sure this post goes anywhere but sometimes it's good to just get it out there.

Tashyboy · Mar 20, 2020

Had a txt conversation with a woman in the RBL late last night. She is in bits about the closure of the local village hall. It's the straw that broke the camels back. Reason I say that, like your post, just talking helps. keep talking and thoughts.

Lord Tyrion · Mar 20, 2020

Robster59 said:

Keep posting, it's good therapy. After a LOT of aggravation, persuasion and effort my wife has set up a number of things now. Social services come in 3 times a week to wash and dress my MiL. A carer from a professional company comes in for 4 hours on a Friday to spend one on one time with my MiL. This gives her stimulus and my FiL a chance to get out. Have you looked at this type of thing yet? If not, you really should.

We had also found an Age UK session where they picked her up in the morning and returned her in the afternoon. This again gave him a break and her stimulus. Annoyingly we only recently discovered this and it has had to be postponed for the time being, obvious reasons. Age UK seemingly do quite a bit for dementia patients but we had not realised. One to check out when the world returns to normal.

The current isolation is going to be tough for dementia carers. Make sure you look after yourself and your wife. Don't try to carry the burden between you both.

Robster59 · Mar 25, 2020

Lord Tyrion said:

Stimulus is a big thing he's missing now. You can see a real change over the last couple of weeks. Slowing down physically and mentally. I've started taking out for a 10 minute walk every night just to get him moving but as he's not really interacting in the way he was, I think it's having a real affect on his thought process. We try to talk to him to keep him going but the four days a week he had going out to the club in the morning were really of help to him.

oxymoron · Mar 26, 2020

I am sat here reading this with tears in my eyes, its just like a replay of whats happening with my dad

.
We had to put him in a care home for his safety , he refused to live with us as he did not want to be a burden , ffs he is my dad he will never be a burden,
but the decision was taken from us when he fell while outside at 2 in the morning after just leaving the house ,doors open and everything .
He ended up in hospital where a very , very good doctor insisted he was not fit to be by himself and something was wrong and sorted all the tests that others said he did not need
as it was just "old age".
The decline in him is startling, to be honest its frightening .
Initially i felt guilt that we could not give him the support he needed however, looking back i see it was the best thing for him , he was not coping and since my mum passed
it became more evident when you look back. The staff at the home he is resident at are fantastic , we could not have wished for a better one.
The next thing is this current isolation , we have been told not to visit for 3 months and this is going to be hard , very hard, however the staff are facetiming relatives
but it is not the same and to see him basically withering away is traumatic .

Robster , i think you are doing a brilliant job , i wish you well and pray you get the support we got when you need it, it is a tough time but as long as you remember
how he was and its his condition affecting him now , its not his choice and as said patience and understanding are key .

Sorry for unloading and hope i have not hijacked the thread .

Lord Tyrion · Mar 26, 2020

oxymoron said:

A large part of the point of this thread is to unload. It doesn't belong to any single one of us, it is for all. It does you good to unload so feel free to keep doing it.

Powerful post

Robster59 · Mar 26, 2020

oxymoron said:

Sorry to hear about your Dad. You're not hijacking the thread at all. I think LT set it up for anyone in this situation to be able to "talk" about the situation. I come back to it occassionally as it's just somewhere I feel I can share in an almost impersonal way. It's good (if you know what I mean) to know that there are others like me and that we can share these things. It is so sad to see that someone you care about going through this. I have been more fortunate with my parents that my Dad was fully with it till his death at 92. My Mum is still going at 97 but whilst a little "away with the fairies" is not in the same situation as my Father in Law.
I have a very good friend who's father was Billy McNeil. That was very sad to watch, and for somebody who was such an icon for so many people.
Please feel free to keep sharing if it helps.

Robster59 · Mar 26, 2020

Lord Tyrion said:

Bit of a late reply on this, but we got him a talking alarm clock from Argos. A lot better than a normal clock as he stopped being able to understand it a while ago. When he had his dementia test he was asked about clock positions and he just couldn't handle it. So he now has in his bedroom a talking clock and a clock with a light sensor so it's backlit at night in case he wakes up. Again from Argos.
He is also anxious about getting to places on time so we usually tell him his appointment is about half an hour later and that way he's not hovering around all the time.

Lord Tyrion · Mar 26, 2020

Robster59 said:

We gave up on the big clock, it was digital incidentally. We then got her a talking watch. That was better although quite often she simply does not believe it. Not a lot you can do at that point.

In terms of appointments if she knows she has one then she will be up, dressed, coat on by 4am. The appointment could be 2pm but she will be ready to go early doors. She also gets hugely agitated the day before, worried she will miss it and what it is about. We have told my FiL to stop telling her she has an appointment until they have to go to it. Just say 'we have to pop out now, come on'. That is all he has to do. Clueless piece of work leaves appointment letters out on the kitchen table, tells her days in advance, tells her the day before. Then he moans that she is ready 4am and nags him as to whether it is time to leave. My wife, her sister and brother, have said so often, 'you know, for a supposedly intelligent man he is incredibly stupid about this', that I stop them part way through. He has not learnt a single thing in the last two years about how to make this easier, how to manage someone with dementia, not a thing.

If you just have to adjust by only 30 minutes then you are doing well. Take a little victory where you can

.

The positive note for us right now is that she use to do the sundown thing quite a bit and now it has eased. If you have not had that one yet it is where someone with dementia sees that it goes dark and thinks it is time to go to bed. This winter she was going up at 5pm, adamant it was bed time. Now that it is getting lighter in the evenings she is going to bed at a more normal time, getting up at a more normal time. A small victory.

Robster59 · Mar 26, 2020

Thanks for that. Undoubtedly we're going to hit these as well. We may have to get to that eventually but at the moment he doesn't get ready till we tell him to so small mercies

. Certainly I think that if they want something to be done, they feel it has to be done now, and you have to explain to them that it can wait.
He actually has two clocks and if they're not exactly the same, even if they're a minute out, then he wants them to match. Even if he's going nowhere.
What I do know is that I realise that routine and continuity is very important for them. He has favourite programmes and trying to get him to watch something else is tricky.
He's now watched the entire back catalogue of Heartbeat and Death in Parardise.

.
He used to enjoy his football but that's not on now and he doesn't like watching old games (though we'll give that another go) and trying to find him a film he can watch is also tricky.
I work from home and though he's reasonably good at not bothering me, he'll still call through for when he can't find a programme, or presses the wrong button.
Still, what can you do? It's not their fault and they don't know the impact it has on other people.
I think the hard part for him is that he knows he's losing it. I think it bothered him more than it does now, as he's used to it.

Lord Tyrion · Mar 26, 2020

Robster59 said:

I think that last part must be quite terrifying. My MiL completely denied any problem, my FiL the same. By the time we finally got her assesed, we tried for some time and neither of them would listen, she was passed the point of understanding. She is now oblivious to everything which in some ways is a blessing. Knowing what is happening to you, that has to be tough.

Have you tried your dad with old half hour sitcoms? Not too taxing, generally not subtle, you don't have to follow them too hard. UK Gold stuff. Been through the Heartbeat series a few times. What about Father Brown? Daytime rubbish but easy as pie. My MiL used to love murder mystery etc but she can not follow a plot now. That is why Heartbeat, Father Brown etc still work for her

Robster59 · Mar 26, 2020

Lord Tyrion said:

I might try that. Forces TV seems to be the place for the really old British Sitcom that nobody else wants.

He does watch other things but basically anything that involves a good murder!

arnieboy · Mar 26, 2020

How I sympathise with you.
My father in law moved in with us two weeks ago following the passing of my mother in law. It has been difficult adjusting especially for my wife as we repeat things to him loads of times but he doesn't take it in. That ours is his home now, that he cannot leave the house on his own, that he has money in the bank but doesn't need to worry about it. He often asks to go to bed at 6pm before he has had dinner and when he does go to bed he can be up two or three times a night putting on his clothes. His personal and eating habits have deteriorated which is embarrassing for him and us. He is not particularly interested in television and watches the odd programme via the reflection in our French windows. Fortunately we have an excellent dementia day centre that he attends twice a week giving my wife a break. Strangely it was only last night that he mentioned the funeral for the first time which is taking place next Monday.
From being a top civil servant in London to where he is at now is truly sad but we will persevere until such time as it becomes too much to cope with.

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