Care Home Decison - need to tell mum now

[FlatOutAgain]

Thank you for the support and advice over quite a long time. I have massively struggled with the decision to put mum into a care home and even a couple of days ago I could not do it. I visited them both early morning yesterday and it was a train wreck. We have everything in place and today after viewing another room that had become available we have made the decsion. We really like the room so need to pay from today although I am not taking mum until next Thursday so she can have Christmas at my house. My sister who lives a few hours away has agreed to come down to help me. Although she has not really been involved I find I now need my big sister to just hold my hand and take charge as the trauma is too much for me to bear on my own. My Dh is brilliant with everything and has managed the whole process but I need emotional help now not practial problem solving help.

The room is nice and cosy with an en-suite at £950 pw. She can self fund for 14 weeks and at the 8 week point we have to inform the LA who will get the ball rolling with a Financial and Care Needs assessment.

We have visited 3 times and it is a very friendly caring home. My dad is going to need a huge amount of support to manage the change and with his own poor health I will have to do quite a lot to help him. I spoke to him yesterday and for the first time he did not say that he wants her to stay home.

I will be telling mum that the Dr. has said she needs care for a couple of weeks to see to her medical needs as she thinks she is dying everyday. As others may know she calls out ambulances on a regular basis and we had to stop her yesterday from calling another. Given her Alzheimers she has no concept of 2 weeks and if things are ok I will just keep telling her that the Dr. says she has improved and will be going home next week (which of course will never come).

Thanks again for the help as we start the next journey.

The deception sounds terrible but until you have lived with dementia in your family you cannot possibly know. The best care homes understand how to manage this. Entering the person's own "reality" works better than challenging it.

My Mum was adamant she would never go into a care home - and I supported her as long as I could in her own home. But there came a point at which she was a danger to herself, others and when I couldn't cope with it any more.

It's like having a toddler - and we wouldn't allow our toddler to stay alone in the house because he "wanted to" would we.

I saw a transformation in Mum when she went into the care home. From, rather dirty, underweight, unwell, in pain, distressed, frightened - TO - happy, well-fed, safe, clean, content and with her physical pain properly managed.

This did not happen for mum, her room was available for her to return to after several hospital admissions as we were continueing to pay the weekly fee There may be a difference if the LA are paying. The LA are unlikely to be able to justify paying for a place in a care home for someone who does not need it as they are in hospital.

It's like having a toddler … but not actually the same.

I understand how hard it is

Been through it this year

My dad is now so happy and so content

We still take him out every other day for a few hours

Best of luck op it is never easy

A toddler does not have capacity, an adult is assumed to have until it's been assessed that they don't.
A person with dementia may be childlike in many ways, but they are adults and must be treated as such, with support to make decisions that help keep them safe and well.
Again this is not saying the OP isn't doing the right thing for her mum. But there are processes that have to be followed.

OP never doubt that you are making the kindest right decision and that you are making that decision for the benefit of both of your parents.
A white lie/ deception is also the kindest way to ease many people into care, I'm sorry that some posters are doubting the validity of your decision- the home themselves will assist if you need to officially assess mental capacity

The room is nice and cosy with an en-suite at £950 pw. She can self fund for 14 weeks and at the 8 week point we have to inform the LA who will get the ball rolling with a Financial and Care Needs assessment. - does she have personal funds that are separate from your Dad's? Don't forget the value of the house will not be taken into account as your Dad is living there - they will only look at her pensions and any other benefits.. They will use those towards her care minus an amount for "pocket money" for her.

It is always difficult to decide when someone does not have capacity and often this happens in the sort of informal way way that you are doing. If she objects to the move and is able to realise what is happening, she has a right to say no. I do realise how hard this is, having worked in the field and dealt with my own parents.

Balancing out each partner's needs is very hard.

My OH went into a nursing home when he became very ill - he was very paranoid but otherwise with it - he himself suggested the move which made it easier for me. He could see I could not manage. It is so hard.

Just to make sure you have all the information you need OP:

• when the LA do their assessment they may not agree she needs to be in a home and therefore will not pay for it. The laws surrounding social care are complex, it's not just a case of ticking boxes.

• if they do agree, the home may charge a 'top up fee' which family have to pay (your mum can't) so it might be worth asking about this now.

• DOLS is relevant when: someone does not have the capacity to make the decision around their care residence and treatment, and under constant supervision and control, and not free to leave. In hospital they're usually a no brainer as the person needs treatment, in a care home it is different. If your Mum objects to the placement, it should be a s21a objection which is taken to the Court of Protection where the judge decides if it should be agreed or not. DOLS and best interests decisions baffle people because there is much emphasis on what the individual wants and whether the level of restraint that they are under is proportionate. All less restrictive options should be considered - 'a gilded cage is still a cage' - is one of the phrases used.

Not saying any of this to put you off, I just wanted to make sure you had all the information available to you as you make this very difficult decision. Good luck 💐

Hi and thank you all very much for the input as it is all gratefully received.

@jellyjellopeea you make some very valid points.

@PermanentTemporary After reading I will contact the care home manager on Tuesday for advice and also call the GP surgery (if open) to explain the position.

If Dad was not at home for whatever reason then it is absolutely clear that mum has to be in care as she is not capable of looking after herself. For example: she would not eat if she is not reminded to eat. That dad is there means that mum can stay at home. However, in reality dad is not capable of looking after mum and his own health has suffered terribly.

Further background that was in other posts but will save time to list them here:

The house is tenants in common which we set up several years ago.
They have a single joint account and two seperate accounts which were set up some time ago. Dad has more money in his as he has the main income rather than it being 50/50. Mum only receives a state pension and even then not the full amount.

She has around 34k in her account which gives her around 13 or so weeks self funding before she hits 23,250. The LA have said to contact them when the funding is at 8 weeks. At this point they will do a care and financial assessment.

She has been diagnosed with Alzheimers from the OPMH in August of this year after scans at the hospital,although had signs of it for at least 20 years. It manifests itself in two ways: She has huge health anxieties and feels she is dying every day. Slowly she has worked her way up to calling ambulances on a very regular basis. We have an anticipatory care plan for the paramedics and a safeguarding plan at the hospital. The second issue for her is security and she feels that she will be robbed at home so any strangers (care workers) are out to steal from her. Ironically she is happy to let paramedics into the house.

Although she has dementia she is incredibly highly functioning when it comes to getting her needs met.

Dad is mid 80s and has had type 2 diabeties for many years. Despite our efforts he has been eating himself into a much worse state and now struggles to get out of a chair. We have adapted the home after a needs assessment following a fall at home. His cognition is very poor and has fallen off a cliff with mum demanding he does everything. Sometimes he just shuts down and cannot cope at all. We then pick up the pieces no matter what time or what day.

Its an awful awful situation and the care home seems to be a solution but given mum's behaviour in hospital we are worried that she may be the same in the care home (time will tell). It is a dementia specialist home and after speaking at length to the lead care person they have managed much worse. They will carry out an assessment of mum when she is in the home.

@Tinselandtree a gilded cage is still a cage. Yes I completely agree and this is why I cannot sleep at night. Yes the LA may feel she should be at home with care at home. We have no issue with this process and understand that it may happen.

@Mischance if she understands what is happening and does not want to be there then we will take her home. At that point I will push for a care needs assessment and see what can be done as I honestly feel the impact on dad will be huge.

@thisisasurvivor @balzamico I need to hear this - thank you

@MereDintofPandiculation mum's physical health is pretty good so hopefully no hospital. Of course we have no way of knowing. She had bowel cancer a few years back but on a recent check she is still clear.

@ThisTimeNext the care home have said similar with people picking up after a short transition period.

@Nat6999 I will make sure to work with the LA should this happen

Finally, in her lucid moments she has herself suggested care to give dad a break. I have no idea how valid this is as it is only what dad says.

Thank you so much again. I never ever take any points as a critisism or harsh and I am just grateful that you took the time to post.

Dh will pick up mum and dad tomorrow for Christmas day. My sister said she would have them but then changed her mind. I am happy to have them as when we get them laughing and smiling it is a memory I can look back on and it brings me a lot of 'comfort and joy.

Thank you and Merry Christmas and my thoughts are with everyone who has parents that need help and love.

@FlatOutAgain it sounds like you’re doing everything right. People here are over complicating it to show off their knowledge of the mental capacity act, in my opinion.
From all you’ve said it seems clear she lacks capacity to make this decision and she appointed you to make decisions on her behalf when she can no longer do so. You’re doing what you believe is right and involving your dad and the GP etc.
until a recent career change I worked in this area for many years doing Deprivation of Liberty best interests Assessments and care assessments. Don’t let people make you doubt yourself.

do check the home will accept LA rates
do check you’re contacting the LA at the right time (when she’s within 3 months of the threshold of her own funds which is about £24K).
good luck

@jellyjellopeea of course you are right that an adult is not a toddler. I completely agree. But it's not always that easy with adults - that's the problem. And processes only work if the person allows or you force it.

But if an adult won't allow the process, (eg PoA), and you love that adult you really have no choice. (It took my mother to damage herself pretty badly before the process could even start).

And the toddler analogy was to show that there was a point when my mother had the capacity of a toddler. She was still my mother and I cared for her very well - as her adult daughter.

But there comes a point--- as anyone who has known dementia knows only too well -............

Would you leave someone you loved to burn themselves, fall, make themselves ill by eating food that was so out of date it was dangerous? Would you leave that adult to unlock the door and "go to the doctors" at 2am in January dressed in her nightie? Would you wait for a "process" to be completed before you stepped in when someone you loved was starving themselves, ("I've just had dinner - I cooked a full Sunday roast just like always"), and was in pain because she was unable to take her medicine but who refused to allow anyone to help because she was "absolutely fine"??

She would allow no carers, no-one to help, (not even me), and would not cooperate with authority. There is a point where you have to take control, process or no process.

Called mum tonight as we did not see the today after having them for the day yesterday. Mum said 'Goodbye' to me as she is expecting to die tonight. This is on the back of no ambulances turning up today. I have been questioning putting mum into a care home but yesterday it was clear there is no other choice.

Dh picked up mum and dad from home and mum sat in the back scraping the bottom of a shoe she had for dad with a set of keys. The whole journey was just scraping the shoe. We sat her at the table and she did not move all day. She was ok being fed and ate everything. Dad was enjoying the company of other people. Mum went to the bathroom and got confused and needed help from my Dd to find the bathroom. One of the books I read said there is confusion if the door is closed and it is a similar colour to the walls, as they cannot be seen. She then did not know how to turn the tap on/off. She was quiet and withdrawn until she wanted to go home at which point she became very aggitated. My Dh has oceans of patience and helped her but she wanted to get a bus home as it was too far to drive. Dh explained he needed milk dozens of times so he may as well drop them on the way. We fully expected her to crash today and become extreme with her feelings of dying as so it played out. My Dh got mum in the car so she was split up from dad as she refuses to leave him on his own. This gave me the first chance to talk to dad who just broke down and was sobbing and sobbing. I held him and said we are taking care of things. He also thinks its for a few days and she will be back but that is really not going to happen.

I am absolutely sure that the best place for her is the care home.

I had a nice Christmas day albeit with sadness for the people they used to be.

I am so very sorry OP - this is heart breaking. You are doing so well for them both.

This is a very hard situation for you, your Dad and your Mum to be in, OP. Sending love and courage as I know how hard this must be for you all. Christmas can be quite disorienting for people with dementia and memories of times gone by can be really painful for loved ones.

Is your Mum getting any further support from mental health services beyond her diagnosis? It sounds like she's very disoriented and understandably distressed at times and that must be incredibly difficult for you all. The OPMH might be able to offer advice and further treatment for anxiety perhaps.

It sounds like you have had sound professional advice so far and some PPs have made helpful comments about ensuring the financial sustainability of the care home costs before any move. Another important thing to consider is if the care home is likely to be able to cater for your Mum's needs in the longer term. Is it a care home with nursing?

Are the LPAs registered with the Office of the Public Guardian? They need to be registered to be used, that is, to enable you to lawfully make specific decisions in your Mum's best interests that she lacks capacity to make for herself at the time. There is useful info on LPAs, the Mental Capacity Act and the Deprivation of Liberty Safeguards on the Alzheimer's Society website (which I'm sure you're probably already familiar with as a LPA). The care home should advise you on this as they have a duty to safeguard your Mum's rights, but a LPA cannot authorise a deprivation of liberty (accommodation and care in a care home (or hospital) which means the person is not free to leave the establishment and they are under staff supervision) for a person who lacks capacity to consent to the arrangements themselves. Only a DoLS Authorisation (from Adults' Services or the Court of Protection) can do this. This can get particularly tricky when a spouse is not in support of the arrangements or has been led to believe that the move to a care home is short-term or for respite. This is a really complex area of community care law and care planning, so it's very important to have a chat with Adults' Services and the care home before any arrangements for your Mum to move are made so that this is all thought about in advance.

Take care xx

Heartbreaking catching up with your thread Flatoutagain.

I'm about six months down the line from you with Mum settled in a wonderful dementia specialist care home.

I would say be very kind to yourself, the last 18 months took more from me than I realised at the time.

Reading your post is so sad but at least you have more certainty.

I'm another one who hopes that treatment for anxiety will be on offer for your dm.

Thank you as always for your replies

@FloozingThePlot Mum refuses to take the medication and as such the OPMH will not assist her. They said that they may help as a one off but other than that no medication = no help. A bit harsh but I understand why they are saying that.
It is not a care home with nursing but it they do specialise in dementia. In addition mum's surgery is opposite and she can therefore remain with her current GP who she feels very comfortable with. I hope to speak to the GP tomorrow.
We have had the LPoA's for several years and they were initially drawn up my a solicitor. They are registered with the OPG and we use the OPG website to give access codes should anyone need to view the LPoAs.
The DoLS is interesting as when mum was in hospital a few months ago they Dr. called me to get consent to place mum into DoLS as her behaviour was upsetting the staff and other patients (she was very irrational).
I spoke with the care home lead person today and she is lovely. We have spoken several times and she is on duty on Thursday. She said that some residents can settle in immediately whereas other it can take weeks but not to worry as they will manage the situation. She said not to panic and pull mum out too quickly as they have experience of dealing with things.
@stayathomegardener @ThisTimeNext Thank you
@PermanentTemporary Unfortunately I feel we are passed that stage but I am hoping that mum will associate the care home staff with uniform as nurses which will calm her anxiety. The increase in activity will hopefully make things much better for mum

Honestly op, you have made the right decision, even if it feels wrong. We told mum that it was a temporary stay until she was better and that the GP recommended it (she trusted him). We told lots of little white lies, her calmness and state of mind was most important, we told her what she wanted to hear basically knowing that she would forget all timescales a few hours later.
The LA were really helpful and there was a 12 week free assessment period then a 12 week 'disregard' for most of the fees so we only started paying the full amount after 6 months.

I have nothing useful to add, only to express my admiration and sympathy for how well you have coped with such difficulties. Your parents are very fortunate to have such a loving and caring family to support them.