Relative diagnosed with Alzheimers

DH and I arranged POA, both Health and Welfare and Financial, when we updated our wills. Two of our children are also named on them.
We were trying to pre-empt any future problems, due to my chronic ill health.

We completed and registered POA while DH’s Parkinson’s was not too advanced, naming each other and our two children. As DH became less and less himself it was so easy to take over the decision making and was one less hurdle to negotiate. Just because it is in place doesn’t mean you have to use it until you need it. Definitely one of our better decisions.

fluttERBY123

Win, a good neighbour has POA as well as 2 nephews who don't live near.
We are waiting for notification that POA is registered. Meanwhile we have to pay for stuff and keep receipts so we can claim once we are able. We are so lucky the neighbour has stepped in and alerted us. This is all very recent and ongoing.

Is there 5 of you all with POA? Have you all both got Health & Welfare and Financial? Are they joint of separate? I think it is a good idea to have more than one in most cases but 5 seems a bit over the top. I would not have thought any one should have registered it without you all agreeing to do so. It is rather an unusual setup from my experience OP. Good luck with getting it all sorted for this poor lady, there are difficult times ahead for sure.

Win, a good neighbour has POA as well as 2 nephews who don't live near.
We are waiting for notification that POA is registered. Meanwhile we have to pay for stuff and keep receipts so we can claim once we are able. We are so lucky the neighbour has stepped in and alerted us. This is all very recent and ongoing.

Thank you, Win. I think she has some unresolved issues about her place within the family which is a shame.

icanhandthemback

I wish you'd tell my sister that, win. She is incensed that I have been made LPA and if I can't manage it for any reason, that 2 of my children have been named. I live up the road, as do my children, my sister lives a couple of hours away and has done for the last 40 years. If I try to get her thoughts about things to do with Mum's care and make the mistake of saying it is a difficult one, she becomes most belligerent and unhelpful. The care of my mother took over my life for a many years so it made sense for me to be the one but it has been turned into a stick to beat me with! Family, who'd have them!

I have been there too with my late partner, being the carer is a dedication that takes over your life completely, it is not until you are there you understand exactly what it entails.

I am so sorry your sister does not appreciate what you and your children do for your mother, she is lucky to have you. She should be supportive and constructive when commented not critical, but yes family indeed. You are doing a brilliant job, be proud of yourself and your children who are willing to help.

JOJO60

Forgot to add, the reason you have POA, is so that you CAN make those decisions, in the relatives best interests, whether the relative likes it or not and it is a big responsibility to take on that role.

yes exactly this and should therefore not be taken lightly

JOJO60

Hi, I used to be a psychiatric nurse so have some background. Firstly "capacity" is not a fixed thing. A person may have capacity to make some decisions but not others. For example, your relative may have the capacity to decide what to eat for lunch but may not have the capacity to recognise that there is a health risk because a food item is out of date, or kitchen utensils aren't properly washed or there are flies buzzing around an un-emptied bin. Unfortunately a person with Alzheimer's may truly believe they are cleaning their house adequately, yet they are not. I think the SW is more concerned about any risks to the health and safety of the person, not that a cleaner will refuse to go into a dirty house. It is difficult to persuade people with Alzheimer's to do something they don't want to do, because they just don't understand that it is necessary, so sometimes it is necessary to take the initiative and intervene because it's in their best interest to do so. The SW can call a "Best Interest Meeting" for this very reason where SW, health workers, doctors and family can all jointly decide what course of action to take to enable the person to remain safely in their own home. Unfortunately, the nature of the illness means that eventually, if assistance in the home is unsuccessful or refused, they may recommend a nursing home.

perfect

Forgot to add, the reason you have POA, is so that you CAN make those decisions, in the relatives best interests, whether the relative likes it or not and it is a big responsibility to take on that role.

Hi, I used to be a psychiatric nurse so have some background. Firstly "capacity" is not a fixed thing. A person may have capacity to make some decisions but not others. For example, your relative may have the capacity to decide what to eat for lunch but may not have the capacity to recognise that there is a health risk because a food item is out of date, or kitchen utensils aren't properly washed or there are flies buzzing around an un-emptied bin. Unfortunately a person with Alzheimer's may truly believe they are cleaning their house adequately, yet they are not. I think the SW is more concerned about any risks to the health and safety of the person, not that a cleaner will refuse to go into a dirty house. It is difficult to persuade people with Alzheimer's to do something they don't want to do, because they just don't understand that it is necessary, so sometimes it is necessary to take the initiative and intervene because it's in their best interest to do so. The SW can call a "Best Interest Meeting" for this very reason where SW, health workers, doctors and family can all jointly decide what course of action to take to enable the person to remain safely in their own home. Unfortunately, the nature of the illness means that eventually, if assistance in the home is unsuccessful or refused, they may recommend a nursing home.

My late mother lived in assisted housing when she was diagnosed with Alzheimer’s. I must say that her SW and GP surgery were excellent in helping and my sister and I had POA. We got a helper in a couple of times a day. Of course, she was resistant at first, like many others, but then came to regard her helper as a friend! Unfortunately, my mum then took to phoning me over 200 times a day - literally putting the receiver down and redialling. This was hellish as you can imagine! We knew she was deteriorating. She then put an electric kettle on the gas stove - thank goodness it was found in time! She was then sectioned and went into a nursing home. Fortunately, this was a lovely place with a lovely manager and staff and she as as happy as she could be for the next year until she passed away. It’s not an easy time and I wish you all the best x

My husband has alziemers and vascular dementia,I have POA and also have the Health power of attorney ( not sure if that's the right name) I suggest you get it too as you never know what the future holds

I wish you'd tell my sister that, win. She is incensed that I have been made LPA and if I can't manage it for any reason, that 2 of my children have been named. I live up the road, as do my children, my sister lives a couple of hours away and has done for the last 40 years. If I try to get her thoughts about things to do with Mum's care and make the mistake of saying it is a difficult one, she becomes most belligerent and unhelpful. The care of my mother took over my life for a many years so it made sense for me to be the one but it has been turned into a stick to beat me with! Family, who'd have them!

This is the advice from the Alzheimers sociaety

www.alzheimers.org.uk/blog/how-offer-help-someone-dementia-who-doesnt-want-it

Sorry you are in such a difficult situation.

Having POA means you are in charge of their lives 100% once they lose capacity how can you do that properly from miles away?

The problem is you have to set up the power of attorney while the person does still have capacity, and may very well continue to do so for many years until it's required to be used.

My parents lived 100s of miles from myself, my brother and sister and we set up both PoA for our parents long before we actually needed them.
Mum has since died and Dad has moved to be near me.
I act on his behalf in every area of his life now as he has vascular dementia.

if you have POA how can you not know if it has been activated OP? Also I can never understand why people agree to be had e POA for someone, if they live so far away, it is not manageable. Having POA means you are in charge of their lives 100% once they lose capacity how can you do that properly from miles away? It is a big decision to become someone's POA and shouldn't be taken lightly. The fact that the SIL has not got capacity and the OP did not know indicates they haven't visited or had their eyes closed, the poor lady must have been struggling. I know I sound judgemental, but I see and hear this every day and feel so strongly, that people should consider seriously what they take on for their own sake and definitely for the sake of their loved one.

It is a hard horrible disease.
SW were so slow to do anything and even when our DM was on palliative care in hosp during last days of SW were trying to move her into a care home - I would not be able to be a SW they have an awfully hard job but SS are too slow to react and families are in crisis.
GP surgery was awful too.
Kept ringing my DM when we expressly told them she had that disease and would not talk on the phone as she wouldn’t remember who they were or what was said!
I’d say get all care in place; personal care, cleaning and cooking.
What needs priority now? Where is the money coming from?
Alzheimer’s sufferers in time won’t remember who came care wise, and when, it’s very confusing for them and everyone is effected differently - as I say it’s so hard and horrible - so sorry I can’t be of more help.

Following with interest as my late mum had Alzheimer's. Luckily I had POA but after falls and a fire in her bungalow the (only) decision was made by me for her to go to a Nursing Home. I say this because she used to ask if she was going home every day I visited her and I lied through my teeth for her own safety, saying the bungalow was being repaired, decorated etc. She accepted this daily and stayed in the Nursing home. It's an incredibly stressful time ahead of you and I wish you luck.

I think if your relative has a degree if capacity, even if it fluctuates, then they cannot be forced by social services to have a cleaner.

I am not sure about that. It would depend on the severity of the situation and the impact on their safety. However, I suspect the SW would have to go before a court to force anything or apply for a DOL.

My mother was unsafe going up and down stairs with the SW deeming that she did not have capacity over that particular decision. However, he admitted he could do little to stop her and we just had to wait until her legs wouldn't take her up and down them before she would give in. Whilst we waited, we had to call the ambulance service on a number of occasions when she got stuck half way up and once again, the ambulance service could only advise that she stayed downstairs. They referred her back to the SW but we remained stuck in an increasingly difficult situation. I had a LPA for my mother but short of force, there wasn't much I could do either.

Self neglect is deemed to be a safeguarding issue which why the SW was saying they would force the issue.

I suspect things must be worse than you expected. Frankly this happened to us and I have never been sure if our eyes were closed to it or not. Wishing you the best of luck.

I've heard today that she does not have capacity to agree her own care. So whole new ball game. We will visit as can't be done by phone. Cake and a long talk.⁸

fluttERBY123

Thanks, NotSpaghetti. It must be the OP stays green.

The OP does stay green, then your subsequent posts should be pink just for you. However, I think it may depend on the device you are using.

I think if your relative has a degree if capacity, even if it fluctuates, then they cannot be forced by social services to have a cleaner.

As for carers, if they are wearing ppe, I fail to see how someone's dirty home affects them (unless it is hazardous to their health)

I don't think the POA has been activated. SIL perfectly fit apart from Alzheimers. We did visit recently and house did not look too bad. No carers. At AgeUK website you have to book.an.appt.for them to.phone you! Will try Alzheimers Soc, thanks.
Aha, sudonim. I can tell SIL that if she deteriorates carers will refuse to enter house if dirty and she would then have to go into a home. Not in so many words, obviously.
We are waiting for an email from the SW about how she sees it all. All very recent.