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A lifelong friend and me

Sam Luvit

Registered User
Oct 19, 2016
5,967
East Sussex
I’ve read your entire thread, so I didn’t say something that’s already been said etc ... but a few things hit me

If I’ve understood correctly, your mum has instructed her solicitor to look after her health & welfare, but no LPA has been set up. I understand her reasoning x years ago, but if no LPA is in effect, then when your mum loses capacity, not even her solicitor can enforce her wishes.

Could you talk to her solicitor, explain your understanding of her wishes, whether that’s DNAR, no heroic measures or Care Home etc. (If she has lost capacity, SS can select a CH if they deem it’s in her best interest), to keep her safe. If she has capacity, you could set up an LPA (she pays for it), do it yourself on line (I’ll happily talk you through it), but instead of it being instantly effective, you select effective when capacity is lost. This doesn’t help you now, but will help later

Cake needs to be your friend. I don't know the medical reason, but cake was my secret weapon for my mum. Resistance to all sorts of things, foul mood or just grumpy, could be transformed with “cup of tea Mum... and how about a piece of cake”.

Carers. I’ve worked for a care agency. I’ve looked after mum. I’m now a Carer. Believe me, the training is woefully inadequate. You have forgotten more about dementia that they have learnt. Three days training, a mere twenty minutes on dementia

Keep phoning and annoying the agency. Tell them the personality your mum responds to. My mum needed someone bubbly, but positive. Insist the carers they send have some understanding of dementia and demand :)rolleyes:), a maximum of five carers. You will need to keep bugging them. This is supposed to be standard with dementia clients, but .....

The carers need to know ... they never say no ... they always instruct.

You / your mum, have the right to say who comes into your home. I felt awful in the early days of carers telling the agency that this one, or that one, didn’t “gel” with my mum ... but we got a “mostly” good team in the end. A good team of carers will make all the difference to getting your mum to work with them most of the time

UTI’s. Yes I know you have far more knowledge on the ins and outs of the true results of a GP dip test ... but ... if your mum is showing more agitation ... more anxiety .. there is a good chance the good old UTI is to blame. It plays havoc with Alzheimers. Get a sample. Take it to the surgery. Request the form (which the GP normally completes), in the box asking why the test is requested put “Alzheimer’s & UTI” and leave it with them. Chances are you will get a call within a few hours and AB’s to clear it

Having met you, I can say, you are doing well, you care & that’s what matters. But ...you need to look after yourself too. Sorry if I’ve been too blunt :rolleyes:, but it’s been a long day and I’m a tiny but tired .... but I wanted to finish reading before I said anything. I’m off to bed .... feel free to tell me I’m talking “rubbish” :eek:
 

Palerider

Registered User
Aug 9, 2015
1,937
North West
watkin.observer
I’ve read your entire thread, so I didn’t say something that’s already been said etc ... but a few things hit me

If I’ve understood correctly, your mum has instructed her solicitor to look after her health & welfare, but no LPA has been set up. I understand her reasoning x years ago, but if no LPA is in effect, then when your mum loses capacity, not even her solicitor can enforce her wishes.

Could you talk to her solicitor, explain your understanding of her wishes, whether that’s DNAR, no heroic measures or Care Home etc. (If she has lost capacity, SS can select a CH if they deem it’s in her best interest), to keep her safe. If she has capacity, you could set up an LPA (she pays for it), do it yourself on line (I’ll happily talk you through it), but instead of it being instantly effective, you select effective when capacity is lost. This doesn’t help you now, but will help later

Cake needs to be your friend. I don't know the medical reason, but cake was my secret weapon for my mum. Resistance to all sorts of things, foul mood or just grumpy, could be transformed with “cup of tea Mum... and how about a piece of cake”.

Carers. I’ve worked for a care agency. I’ve looked after mum. I’m now a Carer. Believe me, the training is woefully inadequate. You have forgotten more about dementia that they have learnt. Three days training, a mere twenty minutes on dementia

Keep phoning and annoying the agency. Tell them the personality your mum responds to. My mum needed someone bubbly, but positive. Insist the carers they send have some understanding of dementia and demand :)rolleyes:), a maximum of five carers. You will need to keep bugging them. This is supposed to be standard with dementia clients, but .....

The carers need to know ... they never say no ... they always instruct.

You / your mum, have the right to say who comes into your home. I felt awful in the early days of carers telling the agency that this one, or that one, didn’t “gel” with my mum ... but we got a “mostly” good team in the end. A good team of carers will make all the difference to getting your mum to work with them most of the time

UTI’s. Yes I know you have far more knowledge on the ins and outs of the true results of a GP dip test ... but ... if your mum is showing more agitation ... more anxiety .. there is a good chance the good old UTI is to blame. It plays havoc with Alzheimers. Get a sample. Take it to the surgery. Request the form (which the GP normally completes), in the box asking why the test is requested put “Alzheimer’s & UTI” and leave it with them. Chances are you will get a call within a few hours and AB’s to clear it

Having met you, I can say, you are doing well, you care & that’s what matters. But ...you need to look after yourself too. Sorry if I’ve been too blunt :rolleyes:, but it’s been a long day and I’m a tiny but tired .... but I wanted to finish reading before I said anything. I’m off to bed .... feel free to tell me I’m talking “rubbish” :eek:
Hello Sam Luvit, you've been busy :)

Just to say the UTI is sorted, and to clarify as I have said before a dip test is not sufficient in over 65's, an MSU (a urine sample) needs to be sent (for the purpose of other readers).

Yes cake is our friend, more and more these days. I have given up trying to get mum to have her ready meals when I am at work. I have conceded that if mum eats cake then its better than nothing. This also ties in with the idea that high fat diet does aid the pathophysiology of Alzheimer's, this might be why pwd get these cravings for sweet fatty things especially chocky and cake.

The carers have been a long standing issue, just acually getting them was difficult (two letters to mums MP) and alot of help from mums SW who threatened to resign if her managers didn't approve the care package. I have met all of the carers and they are all lovely apart from one person/incident, which has been resolved. The problem is that after the incident mum won't let them in the house, they have to stand at the door. I think the one particular incident has changed mums view of all of them, and they are going to have to win back her confidence and connection she makes with them, if that is possible. I have agreed with mums SW and GP that the visits will continue in the high chance of her changing again as the disease itself progresses. Sooner or later it will and the association she has now with them will change again. There aren't any other care agencies in this area so scope for change is zero.

The LPA's are problematic, however this was mums instruction to her solcitor when she had capacity, I am not able to challenge this as it now stands other than making an application to the Court of Protection, which I would in all likelyhood loose. Plus mums solicitors would contest any such application as per her instructions while she had capacity, before the onset of the disease. I have LPA for finances etc. I can't however decide on where she dwells as I don't have LPA for health and welfare. The solicitors can't do anything other than uphold her wishes on the LPA for health and welfare, in that no one is to be afforded that. Mum is now on the radar with SS and the memory team and psychiatrist and the GP has also raised her keeping on eye on things, this is where we are at currently. Respecting someones wishes can be very difficult when we are left stranded with a disease where the person when they had capacity was certain that this wouldn't happen to them and they will continue to self determine their own outcomes. Trouble is, mum didn't realise that self determinism and capacity are two very seperate entities. Round in circles we go !
 

Sam Luvit

Registered User
Oct 19, 2016
5,967
East Sussex
Forgive me for being dense ... I don’t want to add to your frustration o_O I know it’s tiresome explaining to someone yet again, but do I understand that your mums solicitor holds the LPA for Health & Welfare? @Palerider
 

Palerider

Registered User
Aug 9, 2015
1,937
North West
watkin.observer
Forgive me for being dense ... I don’t want to add to your frustration o_O I know it’s tiresome explaining to someone yet again, but do I understand that your mums solicitor holds the LPA for Health & Welfare? @Palerider

No its fine, its never possible to give all of the facts on a forum

To clarify mums instruction was that no one was to have LPA for health and welfare, including her solicitor. So this now rests as a consensus decision between essentially 4 maybe 5 parties based on best interests. I am happy with that for the moment, however as things change (and they will) it will become more difficult for me to soley action anything, such as CH placement.
 
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Sam Luvit

Registered User
Oct 19, 2016
5,967
East Sussex
Oh wow @Palerider, you are in a difficult situation :( You are basically at everyone else’s mercy. Your mums SW has to fight to show she needs the help against SS trying to hang onto the money, throw in the solicitor saying your mum doesn’t want it and you are a bystander in the decision that in fact controls your life. :eek:

I have no magic wand, no solution to beating the Lotto odds, just a listening ear ... not a lot of use to you today o_O:oops:

Although I appreciate you wouId never actually follow through on such a threat, but ... you cannot be forced to look after your mum, that golden phrase “she is a vulnerable adult and the duty of care rests with you” did get ASC to move up a gear when I suggested I move out and leave them to it. It’s something to have in the back of your mind, for a day in the future when you feel you must force their hand.

Meanwhile, back in the present ... I was gripping the steering wheel like my life depended on it going over the Dartford Bridge last night and I’ve been blown along while walking Pooch today. How’s your wind :eek:???
 

Palerider

Registered User
Aug 9, 2015
1,937
North West
watkin.observer
Oh wow @Palerider, you are in a difficult situation :( You are basically at everyone else’s mercy. Your mums SW has to fight to show she needs the help against SS trying to hang onto the money, throw in the solicitor saying your mum doesn’t want it and you are a bystander in the decision that in fact controls your life. :eek:

I have no magic wand, no solution to beating the Lotto odds, just a listening ear ... not a lot of use to you today o_O:oops:

Although I appreciate you wouId never actually follow through on such a threat, but ... you cannot be forced to look after your mum, that golden phrase “she is a vulnerable adult and the duty of care rests with you” did get ASC to move up a gear when I suggested I move out and leave them to it. It’s something to have in the back of your mind, for a day in the future when you feel you must force their hand.

Meanwhile, back in the present ... I was gripping the steering wheel like my life depended on it going over the Dartford Bridge last night and I’ve been blown along while walking Pooch today. How’s your wind :eek:???

Yes you've got it!!

At first when I realised the situation I was upset, but I'm over it now. So long as mum functions and is 'safe' I will let things stand, when that changes I will have to push for more help whether that be at home if mum stays at home or CH placement.

Mums SW has been brilliant, but then she's experienced and old school, I have been lucky in that respect, just hope she doesn't retire soon :eek:

I know Dartford bridge well, often gone over that to get to Dover for day trips to France when I lived in London. I was always the nominated driver because no one else would drive on the wrong side of the road when we got to France....rolls eyes. Side wind is a nighmare sometimes on there. Windy up here at the mo, but not too bad
 

Palerider

Registered User
Aug 9, 2015
1,937
North West
watkin.observer
Today I cooked beef (topside) in red wine with roasted parsnip, carrot, turnip and pots with cabbage and leeks (sauteed in butter). It was such a nice day I let mum have a glass of frizzante (an italian wine dad used to bring home in the 1970's). Mum sipped on the wine and before I had noticed she'd swigged two or three glasses...and then came the aftermath.

She refused to sit and eat her dinner and became quite angry, saying she had already eaten, an argument ensued because whatever I said she would say the opposite until I gave up. I slammed the middle back door so hard the perspex (not glass) fell out and then realised the futility of the situation.

In the end mum wanted to go for a drive, so we went out and drove around and then I stopped at McDonalds and bought her a cheeseburger and fries and a coffee, I had a coffee and we sat while mum ate her tea in the car quite peacefully, and then came home.

I really thought glass of wine would be ok, but it didn't dawn on me to hide the rest of it. The morale of the tale: don't let your loved one with advancing Alzheimer's swig too much vino blanco. All is ok now :)
 

Lynmax

Registered User
Nov 1, 2016
554
I have learnt a few tricks to reduce mums wine intake at family get togetherness - she enjoys a glass or two in the evenings when at home but as we do her shopping, we know she is not drinking too much.

But at Christmas or other special occasions, we have found it best to celebrate at my sisters house ( big enough to entertain the whole family!) as mum gets so argumentative in restaurants, mainly because she drinks wine as if it is water!

What we do is either add soda water to white wine and call it Prosecco or give her non alcoholic red wine with her meals. Personally I think this non alcoholic stuff is revolting but mum does not seem to notice! My brother in law makes himself copious cups of tea so he is under instructions to give mum one whether she has asked for one or not!

It's sad really how many tricks we have to learn!
 

Palerider

Registered User
Aug 9, 2015
1,937
North West
watkin.observer
Oh what a shame. I thought the dinner you cooked sounded lovely - much better than mine.

It was a yummy dinner, unfortunately it didn't get eaten. I have binned the remains of yesterday. I am at work today, so a welcome break, though I will probably worry all day. Mum has a stash of cake etc, so she'll be quite happy munching on that for today.
 

Palerider

Registered User
Aug 9, 2015
1,937
North West
watkin.observer
I have learnt a few tricks to reduce mums wine intake at family get togetherness - she enjoys a glass or two in the evenings when at home but as we do her shopping, we know she is not drinking too much.

But at Christmas or other special occasions, we have found it best to celebrate at my sisters house ( big enough to entertain the whole family!) as mum gets so argumentative in restaurants, mainly because she drinks wine as if it is water!

What we do is either add soda water to white wine and call it Prosecco or give her non alcoholic red wine with her meals. Personally I think this non alcoholic stuff is revolting but mum does not seem to notice! My brother in law makes himself copious cups of tea so he is under instructions to give mum one whether she has asked for one or not!

It's sad really how many tricks we have to learn!
Hmm usually I give her a lemonade that she likes or a small light beer. I think wine is too much now, but equally I don't want to deprive her of the things she still likes. May have to mix the frizzante with soda water in future ;)
 

Sam Luvit

Registered User
Oct 19, 2016
5,967
East Sussex
I had to accept that while I was at my volunteer job, there was nothing I could do about Mum, @Palerider She was as safe as I could make her. She had her lifeline and I could see if she stepped out the door in the Ring Doorbell. Once I accepted that ... I viewed those hours as my respite o_O

I know it’s hard to do, but you need to look after your sanity too ;)
 

Palerider

Registered User
Aug 9, 2015
1,937
North West
watkin.observer
I had to accept that while I was at my volunteer job, there was nothing I could do about Mum, @Palerider She was as safe as I could make her. She had her lifeline and I could see if she stepped out the door in the Ring Doorbell. Once I accepted that ... I viewed those hours as my respite o_O

I know it’s hard to do, but you need to look after your sanity too ;)
Yes I need to to let go of things a little when I'm working. Hard, but I have to in order to relax a little.
 

Palerider

Registered User
Aug 9, 2015
1,937
North West
watkin.observer
Today I am getting the back door lock changed to an anti-lockout cylinder, so if mum leaves the key in the door those on the outside can still unlock it. Just recently this has started to become a bigger problem as mum now leaves the key in the door after she has locked it most of the time. Its good to know she does lock the door, but worrying if the carers or emergency services can't unlock it.

I did consider the smart door locks, but given mum is so used to using a key, I thought it best to stay with the key system.

Another problem sorted
 

Palerider

Registered User
Aug 9, 2015
1,937
North West
watkin.observer
Every day another solution @Palerider :D

Yup @Sam Luvit

Interestingly the locksmith was very understanding when I explained the situation, so in the end I went for turnknob on the inside, so mum can just turn it to lock and anyone who needs to gain access via the keysafe can unlock from the outside. This also solves the problem of her loosing her keys in the house ...bingo a few birds with one stone. No doubt a downside will become obvious in time....we'll see :rolleyes: