Dementia Awareness

Robster59

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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.
You have my sympathies as well. This is probably one of the hardest parts for you as you all have to adjust and it has a tremendous and impact on your life and relationship. If you work from home, it also impacts on that as well. It can be very disruptive at times.
It's going to be hard for yourself and your wife but hopefully you can make your way through it together. I'd try to encourage him to stay up as long as possible. That way then he is less likely to get up in the middle of the night. We've had that with us as well. I could suggest making sure you have blackout blinds or curtains in his room so that he doesn't wake you up at first light.
My Father in Law has been living with us for the last 16 years in his grandad flat at the back but it's only in the last 12-18 months when he has gradually got worse that he has become much more reliant on us.
I have to admit, I have found it helpful just to come on here and type stuff. It's a relief of some sort. Feel free to do the same anytime.
 

Ye Olde Boomer

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It's truly terrible. My dad had it at my age and died just a year older than I am now.
I would rather be humanely euthanized than finish my life as he did his.
In every practical way, he died years before he died.
I guess that I should be thankful for having had him when I really needed him.

I was never exposed to dementia awareness courses, but this is of course America and we don't have the social support net that more civilized nations have.
I'm sure that I would have benefitted from something like that.
I just remember going to the nursing home every day after work and wheeling him around the grounds so that he'd get some fresh air.
He didn't know who I was.
 

arnieboy

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A bit of a shame today, just had a phone call to say that the respite home has had to temporarily close down with immediate effect. Still offering the occasional home visit so may settle for that.
 

oxymoron

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Dads care home rung on Saturday night , he has to go to hospital , vomiting and shortness of breath and as he will get confused and agitated can we go with him ,
asked what the medical staff say being as our local NHS has stopped all visitors and accompanying people in to hospital and was put on to the paramedic who said to go.
Not being sure rang 111 who said do not go but check with the clinician when he gets to A&E .
The consultant says no , only if he tests negative for corvid-19 and he takes a turn for the worse we may be able for 1 of us to go to his bedside, but dont count on it.
This is heart wrenching not being able to be there for him in his state , when he probably needs us the most and at his lowest and most confused .
Luckilly a friends daughter is a nurse at the hospital he is going to and has been video calling us so we have got to see\talk to him and calm him a bit.
She has told us the staff on his ward are using their phones to video call patients families so some contact is kept up.
The staff are brilliant every time he has been on this ward and times like this they really come to the fore , i just hope the families remember this after this virus settles down
and treat them with the respect they deserve (all the NHS staff as well not just the ones they come in to contact with on the frailty wards ).
 

Robster59

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That is obviously very distressing for you and undoubtedly I'd feel the same if I couldn't do anything. It's great to hear that he is being cared for so well. My best wishes to you.
 

arnieboy

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First blow up today. Unfortunately the FinL is very deaf and even with hearing aids my wife and I have to shout to be understood. All he was asked to do was hold the plate up while eating his sandwich to prevent dropping bits of chicken onto the settee. Whoosh, he went into orbit saying that we hated him, that we didn't want him living with us, that he was going to walk to his son's house (he lives 30 miles away) and finally saying that he was going to kill himself. Apparently he used to say similar things to my MinL, I have a much greater understanding of what she went through during the past couple of years. Thanks, feel better for that.
 
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Lord Tyrion

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First blow up today. Unfortunately the FinL is very deaf and even with hearing aids my wife and I have to shout to be understood. All he was asked to do was hold the plate up while eating his sandwich to prevent dropping bits of chicken onto the settee. Whoosh, he went into orbit saying that we hated him, that we didn't want him living with us, that he was going to walk to his son's house (he lives 30 miles away) and finally saying that he was going to kill himself. Apparently he used to say similar things to my MinL, I have a much greater understanding of what she went through during the past couple of years. Thanks, feel better for that.
Two things I would say there. Firstly, don't take anything that he says to heart. The person saying these things is not the person he was. They will hurt and they may be scary but they are just irrational rants.

Second up, don't take this the wrong way, are you sure you are able to cope? People feel huge guilt about this but the best place for him may be a proper care home. That would take the weight away from your wife and yourself, he would get care from dedicated professionals who deal with people living with dementia all of the time. Having spoken to a number of people about this over the last 18 months - 2 years we have found nearly all wished they had done it earlier, everyone has benefited. Don't forget, you are not putting your FiL in a home as he is a bit of an inconvenience, you are handing a person with dementia over to professionals. If you took the sentiment out of the equation, if it were a friend and you were looking in, what would you suggest?
 

Robster59

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Just an update (I find posting on here occassionally helps). I think the lockdown has got us into a routine which helps with the FiL.
I wake him up at 8am for his pills then he lies in till about 8:00 and then goes back to sleep till about 10:30 when I wake him and give him his breakfast. He then settles himself down to watch TV (we had about a month of old Heartbeats continuously on a loop as he didn't want to watch anything else! :oops:). Now he's into watching Western and War films so I'm continously looking for them to download to his Sky box. At teatime I take him for a walk around our crescent to keep his legs going and he seems settled. I'm tending to have to do more to help and advise him as he forgets things more and has no confidence to do stuff for himself now. Even down to working anything bar the basics of the TV remote. I have to watch out for him when he has his shower and supervise his teeth going in and out every day. All fairly mundane tasks which you never think about having to do but somehow you just kind of fall into them. My next task is to cut his hair. I'll just have to keep him away from mirrors for a few weeks afterwards. :ROFLMAO:
The fact that we are staying at home helps but goodness knows what will happen once we both return to work. It helps that a lot of my job can be done from home but there are some days when I have to spend 1-3 days away. That's something we're going to have to think about. Also the fact that we can't go anywhere alone together until we know it is safe to send him to a home for respite leaves the issue of how we're going to get some rest as a bit of an uncertainty.
My missus is more relaxed at the moment but I think once we get back to "normality" (whatever that will be) then I can see her stress levels rising exponentially again.
Lots of other people on here will be in the same boat I know. Strange times.
 
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Lord Tyrion

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My MiL would stand under the shower for 2 seconds and walk out. Sometimes she would go in, not turn the water on and come out! 'I'm done' she would claim :D Toothbrushing took on a similar theme meaning the dentist was picking up problems. My FiL is meant to supervise but fails. We have now arranged for a carer to come in 3 mornings a week to supervise getting washed, deoderant, and dressing. We can't control the other 4 days but at least those 3 are covered. Choice of clothes has become very interesting to say the least, combinations in particular. If you have not done it already I would recommend reducing the number of clothes in his wardrobe. Less choice = less confusion. It also means fewer bad combinations and odd choices. I'm guessing TCM is your friend for westerns. My MiL watches a lot of ITV3, Midsommer Murders gets hammered, but she also likes visual sitcoms such as Only Fools.

What you are doing is brilliant, I take my hat off to you. Don't be shy about getting someone in from social services to help you. Up here the service is actually run by Age UK but the cost is not much and is well worth it. I assume you are getting a carers allowance so use it for that. The sooner you get help the better, it really is.

One thing that really helps my wife, obviously she is not seeing them at the moment but when she was, is humour. Don't laugh at that daft things he does but laugh with him. Make a joke of it with him. After the event then you can laugh at it with your wife. You need huomur as a release, it really helps. (this may be obvious but some feel guilty about it. When you watch carers at work you will see the best ones jolly their patients along, use humour all of the time)

Keep the posts coming (y)
 

oxymoron

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We have been told my dad is deteriorating to the point that he will have to move to a more specialized home with more nursing care .
This will cause him upset and confusion but as it is at the moment he cannot go due to the Covid-19 which really does give us a bit more
time to find home we are sure will meet his needs .We want to be there when he moves it is not fair on him to let "strangers" move him
to a different environment especially as he seems to like it where he is , the staff are gutted he can no longer stay with them the common
comment we get is that he is part of their family and he will be missed (indeed some of the carers were in tears when it was decided he had to move).
 

arnieboy

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My father in law had been with us for six weeks deteriorating by the day, giving me great concern that my wife was heading for a nervous breakdown. Being in lockdown and unable to leave the house was no doubt a contributory factor. Two weeks ago we could not get him up the stairs to bed and he collapsed on the floor. We called for an ambulance and he was admitted to hospital suffering from a urinary infection and pneumonia. We took the decision that we could no longer cope as there were certain behaviours that we could no longer face dealing with. As has been mentioned local care homes are currently not taking on new clients but luckily we found one that had one room left and he has now been there for a week. It is costing a small fortune but the staff have been fantastic so far. Unfortunately we were unable to visit him in hospital or in the care home but hopefully his memory loss will mean that for some of the time he won't realise that we haven't been there for him. My wife is racked with guilt but deep down she knows we had no choice and that this outcome was best for him and us. What a dreadful disease.
 

Robster59

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Thanks everyone. These are the difficult decisions everyone has to make. We have reduced the amount of clothes in his wardrobe as he only wears the same ones over again because he is in the house. TCM and Premier are both very useful for finding films and Sky keep chucking some old ones on as well. We know that eventually he will have to go into a home but that's not going to happen soon. You're right about the costs though.
As I say I think the routines help us as well. He knows how it works and you know you can (sort of) plan your day around it.
I try to keep light-hearted with him. When I cut his hair tonight I told him by the time I'd finished he'd qualify for the lead in The King & I! I tend to make light of anything and tell him not to worry if something does happen so he doesn't get stressed by it.
 

oxymoron

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My father in law had been with us for six weeks deteriorating by the day, giving me great concern that my wife was heading for a nervous breakdown. Being in lockdown and unable to leave the house was no doubt a contributory factor. Two weeks ago we could not get him up the stairs to bed and he collapsed on the floor. We called for an ambulance and he was admitted to hospital suffering from a urinary infection and pneumonia. We took the decision that we could no longer cope as there were certain behaviours that we could no longer face dealing with. As has been mentioned local care homes are currently not taking on new clients but luckily we found one that had one room left and he has now been there for a week. It is costing a small fortune but the staff have been fantastic so far. Unfortunately we were unable to visit him in hospital or in the care home but hopefully his memory loss will mean that for some of the time he won't realise that we haven't been there for him. My wife is racked with guilt but deep down she knows we had no choice and that this outcome was best for him and us. What a dreadful disease.
Arnieboy , yes the fees are astronomical but if you get one with good staff its worth it .Have you talked to social services ? Our social worker was a godsend, she was fully informed and helped on the financial side no end. Did someone explain about top up fees to you ? you do have to be a bit careful in this area as it could end up costing you and your wife to supplement his keep.
On the guilt side its normal , i still have episodes where i ask myself is this the best for him and yes i feel it is , i could not cope if he was not in care . We have just had to do a Deprivation of liberty (DoL) with the council as he is in a secure home to ensure we are not forcing him to be what is basically locked up , even though it is for his own safety ,very traumatic when you realize you are effectively locking them away and this brought on the guilt feelings once more.
However , and it seems flippant to say this , you need to do whats best for all ,for you , your wife and your FiL .
All the best going forward .
 

wrighty1874

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Dementia is quite rife on my father's side of the family, but they all had very long lives, and didn't develop until their 80s, some lived well into their 90s and it was especially horrible seeing my grandad come down with it, as I lived in England while he was in Edinburgh, so couldn't really remember me, and that was heartbreaking. My aunt has just passed away a month ago, suffering from Picks disease, probably the worst kind of dementia going, strips one of all their dignity and are virtually like a baby, unable to speak feed themselves, go to the bathroom by themselves. Such a tragic time for families. Growing old is not all it's cracked up to be.
 

oxymoron

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Just had a call from dads care home , he is now too "challenging" for them and we need to start looking at alternatives .
This is a bad enough task at the best of times but with Covid its going to be nigh on impossible .Have had to speak to
social services but get the feeling its going to be a painful long , hard slog to sort anything out .There needs to be a meeting
of several agencies to come to a decision as to where we go from here even though we all seem to know what he needs ,
and where he needs to go to get the care and environment he needs but these homes are few and far between .
From my side its so stressful , and only someone who has had to do this can understand just how much strain it puts on your
family ,or rather the family members who are left to sort things when others in the family only want to be there for the good things.

Today's rant over , sorry gent's i know this is a depressing subject but i am so grateful to be able to post on here the relative anonymity
really does help , so thank you all who read and understand what we are going through .
 

Hobbit

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Just had a call from dads care home , he is now too "challenging" for them and we need to start looking at alternatives .
This is a bad enough task at the best of times but with Covid its going to be nigh on impossible .Have had to speak to
social services but get the feeling its going to be a painful long , hard slog to sort anything out .There needs to be a meeting
of several agencies to come to a decision as to where we go from here even though we all seem to know what he needs ,
and where he needs to go to get the care and environment he needs but these homes are few and far between .
From my side its so stressful , and only someone who has had to do this can understand just how much strain it puts on your
family ,or rather the family members who are left to sort things when others in the family only want to be there for the good things.

Today's rant over , sorry gent's i know this is a depressing subject but i am so grateful to be able to post on here the relative anonymity
really does help , so thank you all who read and understand what we are going through .
Rant away as much as you like buddy. It is a very stressful, difficult time. The emotional attachment makes it very difficult. Its never far from your thoughts, and at times there's a feeling that everyone else is only giving it 5 mins of their time. A good Social Worker is an absolute boon, and we had one, but a lot of the graft will still fall on you. How on earth you go and vet care centres and homes when they are locked down... its hell anyway, and you definitely have my sympathy at a time like this.

And feel free to rant away any time you like.
 

Robster59

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Just had a call from dads care home , he is now too "challenging" for them and we need to start looking at alternatives .
This is a bad enough task at the best of times but with Covid its going to be nigh on impossible .Have had to speak to social services but get the feeling its going to be a painful long , hard slog to sort anything out .There needs to be a meeting of several agencies to come to a decision as to where we go from here even though we all seem to know what he needs, and where he needs to go to get the care and environment he needs but these homes are few and far between. From my side its so stressful , and only someone who has had to do this can understand just how much strain it puts on your family ,or rather the family members who are left to sort things when others in the family only want to be there for the good things.

Today's rant over , sorry gent's i know this is a depressing subject but i am so grateful to be able to post on here the relative anonymity really does help , so thank you all who read and understand what we are going through .
Rant all you want. I find that writing on here is a release for me. Not all the time, just as and when I feel the need to share it with someone who is going through something similar. We are not at the stage you are at the moment but we know that it will come. It certainly does cause a strain, and different people handle it in different ways. I tend to try and take as much stress off my partner as I can as she gets herself far more worked up than I do. She has never had the best relationship with her Dad and she lost her Mum over 20 years ago. She is an only child so they only have each other.

The important thing is for everyone involved to stick together and don't let it drive you apart. If people who you feel should be helping aren't then that is obviously something you feel you need to address with them, but given your stress levels such discussions can get very emotive (and believe me, living in Glasgow, I've seen lots of heated/emotive discussions :ROFLMAO:). A calm discussion explaining how you feel and how you need support may be better. Some people don't realise, or don't want to realise, just how bad it is.

My Mum is 97 this year and my Dad passed away 4 years ago. I live in Glasgow, my eldest brother had passed and my other brother struggles to cope with things like this so I had to drive down to sort. However, he looks after my Mum although she still lives on her own and has carers every day. My Dad never had dementia and my Mum has wandered but not too bad. But everything is all on my brother and I feel bad about that. But then again we have my Father in Law.

For you, not only is finding the correct care home an issue, but also finding one which isn't infected. This is where you need support of other groups like Age Concern, Dementia UK, etc. as well as Social Services. They are there to help and could provide you with solutions you never even considered. Never feel you're on your own.
 

oxymoron

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Thanks gent's its good to get some stuff off the chest once in a while , i try really hard not to let it take over our lives and fortunately my daughter has really stepped up
and is an absolute godsend .I think i am a bit "old school" and try to be the head of the family (oldest child ) but my brother does not cope very well with situations like this
he almost had a breakdown when our mum passed but i think he could do more he just seems to choose not too.
I realized some time ago i would need help and reached out and once i did , believe me , things seemed to reach a new , more manageable perspective .
As said , when you reach the point of accepting you are not superman, then things get easier, not too easy, but a damn sight easier and when you find out how
widespread this is you do ease up on the guilt of putting them in care ,IT IS THE BEST THING FOR THEIR SAFETY and i put that in capitals to emphasize that .
Not only their safety but your mental health as well if you collapse your family gets a whole set of extra problems they do not need so look after yourself and those around you .
The feeling of guilt never goes but you have to put it in perspective .
 
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