Is it time for a care home?

[Norza]

My 91 year old mum has managed her dementia and lived independently with support for many years. In the last 18 months it's got so much worse. She has mixed dementia.

She believes she has a child who doesn't exist and has become suicidal as he's missing, another child, real but now 16 had been kidnapped by a deceased aunty who she believes is alive most of the time.

The confusion is all the time, she wanted to get ran over as she misses her children it's very real and painful for her.

Now it's discharge time, she's been referred to the mental health team but after discharge. The recommendation is that as she goes into a home and she's not having any of it. She's insisting on going home. It's not safe. I have PoA. What happens now?

 

[Campsie]

It's a very hard decision to make. However, the reality of it is how much it is and will further impact on YOUR physicial and mental health! I've been there with my O.H. He is now in a very good care home and believe me it takes a team of nursing staff, care assistants, cooks, cleaners, laundry staff, activity co-ordinators, mini bus drivers etc. etc., to look after his needs properly. Visiting him is a much better option than wearing myself out by becoming tired, weary, ill and disgruntled. He has plenty of nutritious food three times a day and is assisted with eating it. Lots of cups of tea, juices, water and biscuits throughout the day. He is doubly incontinent and the staff keep him clean and well dressed. He has a lovely, airy bedroom with a hospital style, electric bed. The care home puts on lots of in house entertainment and the residents are taken out in the mini bus to barge trips on the canal, sometimes to the pub for a small refreshment, local cafes, walks in the nearby parks. There are several relatives meeting with the manager organised throughout the year. Also the staff and manager are available to talk and listen to you at any time. I know this is a bit long winded but I have rarely heard anyone on here advocating for a care home. There are very good places to be found. I checked out the high ratings ones online before making the decision. Bear in mind also that as time goes on with your loved ones condition and things do become more and more difficult, then this is the time that you realise how scarce your family and friends have become. Do not feel guilty, you cannot get these 'lost' years back. It's your life too. You can visit your loved ones as often as you like. You can have a holiday, meet up with friends, have a hobby. Good luck. I did it and have never regretted it.

 

[Norza]

Hi, it's so good to hear a positive, warming story.

In my heart I know she is no longer safe. I am one of five children but she will turn on those who do the most. She always has to be honest. She throws home carers out after a week or two.

She is strongly fixed that she won't go to a care home, but we are all, in or near, our 60s, most still working, we can't give her the 24 hour care she needs. She will be so angry with me if she doesn't go home

When the pain of being without the imagined child is so bad, of course it's real for her, she wants to get herself ran over. She lives alone and has the plan. She regularly says she's suicidal, It worries me of the harm she could cause though i very much doubt she'd make it to the road, she's very physically weak. She's scared and agitated at home but doesn't want a care home. So far the hospital have said she's had the capacity to make her own decisions as recently as a few months ago. She's deteriorated so quickly that's no longer the case.

I had a call last night her children were in the hospital but the nurses wouldn't let her see them. So distressed, so confused, it's so sad

I'm so upset I've taken a couple of weeks off work as keep crying out of the blue. Not a good look in front of customers.

 

[maisiecat]

My husband is in a dementia nursing home. He was transferred from hospital following a fall. He has Parkinsons 19 years and Mixed dementia 6 years. It was made plain to me that he wouldn't be allowed home due to his and my safety.
Fast forward 8 months and the home has worked their magic on him. He has become continent again,he engages with activities, he tells me he is the best one there and also I am the wife that visits most so he is also the most loved.
He is able to cope with the simple life and that has made him more settled. I haven't seen a psychotic epiesode for months.
We spend much time in the garden which he likes. He does occasionally ask to come home but I always use his Parkinsons as the reason not to.
His life is better in the Home,he is not hallucinating, he is not frightened and he is not violent. I think as soon as safety becomes a huge issue it is the better option but more than that for my husband he has given him a lovely safe life.

 

[Banjomansmate]

The important question, as always, who will be paying for the residential care that you believe necessary, your Mum or the Local Authority? Has there been a Best interest meeting? If you will be relying on LA funding you will have to go through the Social worker system which usually insists on home care visits four times a day before they consider a care home.

 

[Sarasa]

Welcome to Dementia Support Forum @Norza. It sounds like you've reached the stage where you need to do what your mum needs to keep her safe rather than what she wants.
I assume she is in hospital at the moment? If she would be self-funding (having savings of over £23,500) now is the time to look at suitable care homes. Care Home UK is a useful site to help you draw up a short list to visit. Not all homes are alike and what will suit one person won't another. Also don't rely on reports and reviews but go and visit and see what you think. When you get to that stage there are lots of people here who can support you with suggestions of what to ask. If you need Social Services to pay it might be trickier, but if it has been recommended she moves into care keep stressing how she is unsafe at home and that the family can no longer support her due to the increase in her needs.
A move into care isn't a failure. You'll still be looking after her, just with a team to support you. As @Campsie says there will be lots on in a home, my mum and I took part in a flash-mob dance display for instance and there were always lots of activities to do and entertainers visiting. Yes, my mum wasn't always happy, specially at first, but then she wasn't happy anywhere by then.
As for her distressing delusions about children I don't know if this thread will help you find ways to distract her. It's not easy and I didn't always manage with my mum, but it does help a bit, Compassionate Communication with the Memory Impaired.

 

[Louise7]

Now it's discharge time, she's been referred to the mental health team but after discharge. The recommendation is that as she goes into a home and she's not having any of it. She's insisting on going home. It's not safe. I have PoA. What happens now?

Hello @Norza welcome to the Dementia Support Forum. Sorry to hear about your mum, I hope that the mental health team will be able to help. You mention that the hospital is recommending a care home, your mum is considered to have lost mental capacity, and you have PoA. Hospitals operate a 'Discharge to Assess' process (D2A) and they will decide the level of care that your mum requires on discharge, and the hospital social work team will usually be involved in this process too. It may be agreed that your mum would benefit from a short stay in a care home, perhaps pending input from the mental health team, in which case this will be funded by the NHS. In terms of other options, as mentioned above, the situation will depend to some extent, on whether your mum is able to pay for her care herself or whether the local authority will be funding. If there are safeguarding issues which mean that your mum will not be safe to return home then these will need be taken into account too.

Although your mum doesn't want to go into a home, there does come a point when what someone needs has to take priority over what they want, and as PoA you are required to make decisions in your mum's 'best interests'. Your mum needs 24hr care and will be unsafe if she returns home. The decision to move someone into a care home isn't easy, but from experience a move to a care home is a bit easier if someone is moved there straight from hospital as you can, quite rightly, say that the decision was made by the doctors, not you. This may help to deflect any anger away from you and towards the medical team. It can take some time for someone to settle in a care home, and the change can also be difficult for carers/family too, but there have been lots of positive stories here about the benefits of a good care home environment for someone with dementia.

The link below provides an overview of the hospital discharge process which you may find helpful, although there can be variations depending on the ares/ hospital Trust. Is the hospital aware that you hold PoA? As they have now said that your mum is fit for discharge it's a good idea to ask to speak to someone from the discharge team to discuss what is best for your mum.

What happens when a person with dementia is discharged from hospital?

How and when a person with dementia is discharged from hospital will depend on their circumstances. Some people with dementia will not be well enough to leave hospital and will need end of life care.

www.alzheimers.org.uk

 

[Kristo]

I knew my dad would be safe and well-cared for in the care home that we chose, but what surprised me most was how happy he was. A whole team of cheerful staff to cater to his every need, lots of activities that he loves, plenty of other people to chatter away to, a nice garden. His quality of life improved immediately, as did ours - we still had the guilt (oh the guilt!) but seeing how happy he was did make it easier. We still have days of tears and asking to go home however, so it can still be a bit of a rollercoaster but the relief of getting the professionals involved is immeasurable. Good luck, go and visit a few to get an idea of what’s on offer x

 

[Ellie2018]

It's a very hard decision to make. However, the reality of it is how much it is and will further impact on YOUR physicial and mental health! I've been there with my O.H. He is now in a very good care home and believe me it takes a team of nursing staff, care assistants, cooks, cleaners, laundry staff, activity co-ordinators, mini bus drivers etc. etc., to look after his needs properly. Visiting him is a much better option than wearing myself out by becoming tired, weary, ill and disgruntled. He has plenty of nutritious food three times a day and is assisted with eating it. Lots of cups of tea, juices, water and biscuits throughout the day. He is doubly incontinent and the staff keep him clean and well dressed. He has a lovely, airy bedroom with a hospital style, electric bed. The care home puts on lots of in house entertainment and the residents are taken out in the mini bus to barge trips on the canal, sometimes to the pub for a small refreshment, local cafes, walks in the nearby parks. There are several relatives meeting with the manager organised throughout the year. Also the staff and manager are available to talk and listen to you at any time. I know this is a bit long winded but I have rarely heard anyone on here advocating for a care home. There are very good places to be found. I checked out the high ratings ones online before making the decision. Bear in mind also that as time goes on with your loved ones condition and things do become more and more difficult, then this is the time that you realise how scarce your family and friends have become. Do not feel guilty, you cannot get these 'lost' years back. It's your life too. You can visit your loved ones as often as you like. You can have a holiday, meet up with friends, have a hobby. Good luck. I did it and have never regretted it.

What a lovely response, you’re right we always hear the negative rarely the positive. I had chemotherapy and was dreading it because of all the negativity I’d heard. I put my journey out there as much as I could because I wasn’t half as affected as much as I’d expected but we only hear the bad stuff for everything.

 

[Norza]

The important question, as always, who will be paying for the residential care that you believe necessary, your Mum or the Local Authority? Has there been a Best interest meeting? If you will be relying on LA funding you will have to go through the Social worker system which usually insists on home care visits four times a day before they consider a care home.

This is all new to me, I think it will be the local authority. She's had several in home care packages so that hurdle has well and truly been passed. Mum currently is in hospital and is in the social worker system. She will be discharged with the first 6 weeks in place. My biggest upset is over getting her in to the home she needs for her safety when she's violently opposed to it. (We are selling the idea of convalescence before going to her home) She's softening, only a little. I fear it's going to be an emotionally difficult week as she's medically fit for discharge.