Dealing with Dementia

[Richard (OldStager)]

Yes thanks, I saw a version of this on YT last week, I think the early onset variant is just so tragic. I watched a film last night called Still Alice, same subject matter regarding early onset.

[Richard (OldStager)]

Anyone had any experience of a DoLs form - 

Mental Capacity Act Deprivation of Liberty Safeguards (DoLS)

 

It's not going at all well at the home my Uncle is in, the staff still want him out and all we can do now is apply for the above form, I would imagine this would need to involve his own GP and perhaps other qualified persons.

 

If only he would just realise he was in the right place for him, so frustrating.....

[Richard (OldStager)]

Ok well another evening of phone calls and it seems we now have the DoLS form granted and actioned. So now the care home are duty bound to hold him against his will - as dreadful as that sounds. I even got to speak with my Uncle on the phone and he is livid, but for the wrong reasons. He thinks he is there not because he is ill, but because it's the only way the family can get to his money, whilst he is out of the house !!. Pure paranoia of course.

 

It is so sad to hear those words come from his own mouth, you could not wish for a more generous family member than he. 

 

See how the next few weeks go then.

 

Hey ho.

[barry peel]

We did the same thing with my stepdad, the care home bit, just for a couple of weeks rest bite mainly for my mum. My step dad instantly threw the TV out of the window in a rage. He settled down after day 2 but never came out. He was moved to a specialty care home after that as he was classed as violent. Most violent thing he did after that was pee in the corridor.

One sad thing is people would see him for an hour or so and could not understand why he was put into a care home but for my mum living with it 24/7 it was a different story. I would call round and be told my mum had not made him a drink all day. There sat next to him were 5 different mugs of tea all at different stages of being drunk that morning.

Horrible time, thankfully it didn't last too long (which was a blessing for all concerned)

 

[Richard (OldStager)]

Thanks Barry for that, and sorry you had to go through the situation. My uncle also has no conception of why he is there, or at least the real reason ( because he is ill) he thinks we have put him there to siphon off his cash, which is quite frankly ridiculous. According to staff, his moods have been swinging to a violent side a bit now so things need to be done.

 

Things have moved on a lot since I last posted, he got caught naked in a female residents bed one night, of course he had to be transferred to a more secure part of the care home , together with 24 hour care. This sadly will exceed the budget constraints of the family as this sort of care is on top of the rather large weekly bill for what is classed as 'normal' care.

It's quite plainly harder on the families left having to deal with this, as he has no clue he is behaving like this.

 

And yes, as cruel as this may sound, I do hope he 'goes' sooner than later, for everyone's sake.

Dreadful thing to say I know, but until you have seen it and had close dealings you can't make judgements .

[barry peel]

43 minutes ago, OldStager said:

Thanks Barry for that, and sorry you had to go through the situation. My uncle also has no conception of why he is there, or at least the real reason ( because he is ill) he thinks we have put him there to siphon off his cash, which is quite frankly ridiculous. According to staff, his moods have been swinging to a violent side a bit now so things need to be done.

 

Things have moved on a lot since I last posted, he got caught naked in a female residents bed one night, of course he had to be transferred to a more secure part of the care home , together with 24 hour care. This sadly will exceed the budget constraints of the family as this sort of care is on top of the rather large weekly bill for what is classed as 'normal' care.

It's quite plainly harder on the families left having to deal with this, as he has no clue he is behaving like this.

 

And yes, as cruel as this may sound, I do hope he 'goes' sooner than later, for everyone's sake.

Dreadful thing to say I know, but until you have seen it and had close dealings you can't make judgements .

Only plus side of the TV episode and being classed as violent was his care was free after that point. Maybe something to look into what classes as free care. This was 10 years ago so maybe things have changed.

[Richard (OldStager)]

Yeah, I think things have changed from what I gather, but we are all due to get together very soon should Uncle continue in his ways, not really sure at this point what all the options are, we need some professional advice on that as well as legal matters. A member has suggested AgeUK as a first step, and I think that's a great idea.

[jeff oakley]

You need to get specialist advice on this now. Look at the various charities as they will know what he is entitled to, particularly the various mental health ones.

 

As he is in care, the cost falls on the family at the moment, if he is medically assessed then it is met by the state and trust me the costs of care especially if it is in a secure home, is going to drain what ever funds he has quite quickly.

 

We found age concern were good. Also if he is ex forces they have excellent support networks for such occasions.

 

I feel your pain as it is a difficult situation to be in, but remember it is for his own good but do not neglect your mental well being and health. Know when to walk away for a bit as it is draining, heart breaking and guilt ridden. 

 

For me wishing the end still hurts to think about now and my Dad's situation was nothing like what you have with your uncle.

[Richard (OldStager)]

Thanks Jeff

 Well the family did a rough 'back of a fag packet' calculation and with the current extra care needs there is about 2 to 3 months worth of funds available , I don't know the finer points as I am 60 miles away at the moment. So getting a place that can perhaps be at least part funded would be a huge load off our minds.

 

Yes, I made the rookie mistake of actually talking to him the other night, and I will decline the staff members offer to chat again with him if asked - far to harrowing. For now I am 'walking away' so to speak and I will not be calling the home unless I have to for a few weeks. He has only been in there just a week today, so all this has happened in less than 7 days...

[jeff oakley]

One of the mistakes people make is in how they own their home. I may be wrong but as I understood what they told me at the time, the council looks at all the assets, including the home so you estimate may be wrong if they own their own home.

 

They cannot force your Aunt to sell it but can put a charge on it. This is where having joint tenancies at least protects your Aunts half.

 

The money did not come into it for me as my Mum had already died but the council approach as soon as they knew there was assets of a considerable amount, changed and there was a sigh of relief on their side as they knew it would not fall on them.

 

[Richard (OldStager)]

I wasn't going to mention property as it's not within my remit as it were as just being his nephew, but his daughters do perhaps need to  consider quite carefully what happens with that, I am not going to mention values either on a public forum as it isn't fair for the family.

 

My Auntie died 3 years ago, so the 'wife' side of things no longer applies, this was the major concern we had with him being in a large house on his own, stairways and other hazards seen in an average house. Losing his wife was also the start of his downfall ( unsurprisingly)  after being together for 50 odd years I think it was.

 

I have already been made aware of assessing assets when it comes to deciding what to do, again this really is not my business to be honest, but I would be happy to be consulted on possible approaches should the family want my opinion.

[John Dolan - Wirral & North Wales AO]

Richard,

 

This is a situation that many find themselves, towards later years. I will not advise, but just speak from experience. Family is foremost, helping each other to cope, lightening the load. I had a conversation with my mother in law, afterwards she asked her husband, who was that? Distressing and frightening.

 

best wishes,

 

John.

[Richard (OldStager)]

Appreciate that John, helping lessen the load is why I got involved to start with, my cousins are his only children, and they are now grown, married have their own families and work as well, so anything I could do - even for just moral support , was worth it as far I saw it. As it happens my Uncle still is able to identify voices over the phone, it's just the interpretation of the words he hears he struggles with.

[Richard (OldStager)]

a small update to this thread, last week my uncle was transferred to more suitable care home since the previous one, although claiming to deal with dementia really didn't cope that well with him and that inturn was making his behaviour worse, i rang the new care home yesterday and they report he has settled in nicely with none of the reported behaviours taking place. a lot of this was caused by staff not having suitable skills in dealing with certain types of dementia, which in my uncles case is called lewy body, having had him re-diagnosed.

 

so should anyone out there be in a similar situation, i think doing a lot of research on where is best is paramount and preferably recommendations of others who have had to do this . the local council were quite helpful with suggestions even though he was funding himself rather than help from the nhs.

[Richard (OldStager)]

my personal involvement in this thread has now ended, as my uncle died on the 22nd of dec. i was very fortunate to see him just the day before and got to say the things that perhaps we don't often say when folks are alive and regret ever afterwards.

we don't know when the funeral will be as we can't get a death cert till the 4th jan together with funeral directors etc.

 

this year got even worse as well, as i was to learn another uncle died on the 24th of dec, so in all not the best of christmas's for the family.

 

however, at least we can now greive and get on with life, but for those that are having to deal with dementia now or in the future, the only thing i can offer is please do your homework regarding the type of care needed, and check to see if they can cope with the various stages of dementia well in advance of them receiving such care. the first home he was in did not - we were to later learn - cope with the later stages of the illness and just made my uncle more frustrated which just made the care home not bother with him. personally i would not bother reading online reviews about care home a, b or c. but try and talk to the relatives in person where possible and get their views, online websites only allow posts if they give glowing reports, which is where we went wrong in the first place. the second and final place he was in was fantastic, great staff that you could talk to 24 hours a day - and i did - and the care they gave was as good as i could expect , with all mod cons in his room. so if you want a recommendation for the wirral area please pm me.

 

stay safe all.