What's best for Mum

[MrsSully]

My Mum was diagnosed with Vascular dementia about 3 years ago. Up to that point she was a carer for my Dad who had had a bleed on the brain a couple of years before. As mums condition worsened the family engaged carers (mum and dad are self funding) to help mum cope with dad, dad is fairly immobile and is catheterised . The carers are principally sorting out dad, getting him up and down from bed and popping in to help mum with lunch and early evenings meals.

Mums dementia has worsened recently, gradually all the things she was able to do have had to be taken away as she became a risk to herself, the onset of coronavirus has been the final straw. Mum and dad live 150 miles away from me, so I've not been able to see them at all, but I've called every day religiously.

Mum has started to become aggressive to the carers, this happens when Dad struggles to get up and makes a fuss when the carers are helping him. Mum, in her little world thinks that they are hurting him and gets agitated, she's hit a carer, she's also threatened them with a razor and a knife. Her meds have been increased, but can't be any further as there is a risk she could fall downstairs.

The care manager has let me know that he feels it's time that mum needs specialist support, which I totally get as I wouldn't like anyon working for me to be put at risk.

Problem is mum and dad have known each other all their lives (Dad was taken by his Mum to see Mum the day she was born as they lived next door to each other), so to say they are joined at the hip is an understatement. They are both in their late 80's. To separate them would be really stressful, Dad had to go into hospital earlier this year with a UTI, I stayed with Mum at the time, she was so upset and kept asking when he was coming home and was really agitated.

I've spoken to Dad about what he'd like to do, but I don't get an answer, all he says is things ain't that bad at the moment and I shouldn't worry. He also is totally against going into a care home.

I feel completely stuck and don't know what to do, the care manager hasnt withdrawn the current care support as yet, but he's waiting for me to tell him what has been decided, any longer and the situation may be taken out of my hands.

I do have a POA for health and welfare.

Any advice would be greatly helpful.

 

[lemonbalm]

Hello @MrsSully . It sounds as thought the kindest thing would be for both your parents to go into the same care home. I see your Dad is against it but it may be worth looking at https://www.carehome.co.uk/ just to see what is available and put some feelers out. You could treat it as a temporary stay or a holiday for them, and calling it a convalescence home or rest home may get a better reaction. It's not an easy decision I know but there will be lots of advice and support here for you here. Has the care manager given you any advice?

 

[MrsSully]

Thanks lemonbalm - To be fair the care manager has been doing some research for me and has provided 3 options.

One takes them further away from me and is very expensive, another is in the same area where they are now, but again quite expensive, the third option is where there are bungalows that are attached to the care home, the home has previously not had good ratings but is apparently improving, dad could purchase a bungalow and mum would need to be in the home. Dad would still need care visits though.

All this then entails selling their home and clearing it beforehand, something doubly difficult right now, let alone being able to see either home to assess its condition.

I do have another option which I've considered, which is to get them close to me, but as I live in Surrey the costs are much higher per week, so I'm not sure if they could afford it. I'd say the costs are almost £500 per week for each of them over the costs quoted for the local (to them) homes. I'm worried that they may be able to just afford 2 years in these homes, but then would be reliant on top ups which I can't afford as I'm a pensioner myself.

 

[Pete1]

Hi @MrsSully, welcome to the forum. What an incredibly difficult situation. There should be a notice period so immediate withdrawal shouldn't be an option in normal circumstances, but Mum threatening staff may probably mean that it doesn't constitute 'normal'. If they withdraw the support and you can't engage another company you may have to turn to the Local Authority as an emergency/safeguarding situation. I agree with @lemonbalm, I would speak to the Care Manager for their advice - it won't be the first time they have experienced this.

I appreciate that your Dad doesn't want residential care but it does seem like the only viable option going forward, as Mum will continue to deteriorate. I have seen husband and wife living quite successfully in residential care and you should be able to find a setting that will be able to manage your Mum's dementia and Dad's needs too - potentially closer to you so that you can visit more freely too.

At the moment you are self-funding and will therefore have freedom of choice - be aware it will be expensive for both Mum and Dad to go in to residential care, probably around £100k a year. Unfortunately it is going to have to be you that makes the decision for your parents, which I totally understand is a really awful position to be in as you feel as you are going against Dad's wishes. All the best.

 

[Bunpoots]

Welcome to Dementia Talking Point @MrsSully

I agree with @lemonbalm that the best solution would be to find a carehome that can manage both your mum’s and dad’s needs. I think most PWD hate the idea of a carehome and I resisted the idea of my dad going into one but once he did I realised he should have moved earlier as trying to keep him safe at home was becoming impossible. The move also helped with the anxiety he’d had at home.

The idea of selling the move as a holiday in a nice hotel is a good one - even if it will be a permanent move.

 

[lemonbalm]

Thanks lemonbalm - To be fair the care manager has been doing some research for me and has provided 3 options.

One takes them further away from me and is very expensive, another is in the same area where they are now, but again quite expensive, the third option is where there are bungalows that are attached to the care home, the home has previously not had good ratings but is apparently improving, dad could purchase a bungalow and mum would need to be in the home. Dad would still need care visits though.

All this then entails selling their home and clearing it beforehand, something doubly difficult right now, let alone being able to see either home to assess its condition.

I do have another option which I've considered, which is to get them close to me, but as I live in Surrey the costs are much higher per week, so I'm not sure if they could afford it. I'd say the costs are almost £500 per week for each of them over the costs quoted for the local (to them) homes. I'm worried that they may be able to just afford 2 years in these homes, but then would be reliant on top ups which I can't afford as I'm a pensioner myself.

It's all difficult enough without the current extra issues. Do you have any family/friends nearer your parents who can help out with a move and dealing with the house? Only you can decide the best option but you probably don't need the extra stress of worrying about finance by moving your parents near to you. Dad in his own bungalow with mum in the care home might mean they would miss each other. Are you able to have a video tour of the care-home near where your parents are now?

 

[MrsSully]

Hi @MrsSully, welcome to the forum. What an incredibly difficult situation. There should be a notice period so immediate withdrawal shouldn't be an option in normal circumstances, but Mum threatening staff may probably mean that it doesn't constitute 'normal'. If they withdraw the support and you can't engage another company you may have to turn to the Local Authority as an emergency/safeguarding situation. I agree with @lemonbalm, I would speak to the Care Manager for their advice - it won't be the first time they have experienced this.

I appreciate that your Dad doesn't want residential care but it does seem like the only viable option going forward, as Mum will continue to deteriorate. I have seen husband and wife living quite successfully in residential care and you should be able to find a setting that will be able to manage your Mum's dementia and Dad's needs too - potentially closer to you so that you can visit more freely too.

At the moment you are self-funding and will therefore have freedom of choice - be aware it will be expensive for both Mum and Dad to go in to residential care, probably around £100k a year. Unfortunately it is going to have to be you that makes the decision for your parents, which I totally understand is a really awful position to be in as you feel as you are going against Dad's wishes. All the best.

Thanks Pete 1, you've hit the nail on the head, I'm finding it really hard to go against their wishes. Dads nature is very obstinate, I know he will refuse to go into a home and will not recognise Mum's needs, he doesn't really understand dementia and thinks she's capable of doing things as she always has. Mum will not be separated from Dad, she thinks she's still his carer and feels sorry for him. Sometimes I just feel like just leaving them to it and getting social services involved, but I want to do the best for them and help them into a more fulfilled existence instead of basically being imprisoned within the 4 walls of their home. They only see the carers as they live too far from any day centres - friends no longer visit as they've either passed away or they are infirm themselves. I fell I'm at my wits end.

 

[MrsSully]

It's all difficult enough without the current extra issues. Do you have any family/friends nearer your parents who can help out with a move and dealing with the house? Only you can decide the best option but you probably don't need the extra stress of worrying about finance by moving your parents near to you. Dad in his own bungalow with mum in the care home might mean they would miss each other. Are you able to have a video tour of the care-home near where your parents are now?

I've had a look at the website, there is a 360 degree tour, but it will only show what they want you to see in the end.

 

[Pete1]

more fulfilled existence instead of basically being imprisoned within the 4 walls of their home

It is interesting that you say that @MrsSully, when my Mum went into residential care she had a much richer life, she could watch TV in her room if she wanted, but there were also other activities that she could take part in (and did) e.g. church services, exercise (yes, I know!), old films etc. - they also did trips out to the garden centre etc. But most importantly there was 24 hour care, and as Mum's dementia progressed she would become quite worried and agitated in the evening.

It is really difficult to predict how quickly your Mum will deteriorate, that is always an unknown, and the aggression is a worrying sign. Do you have any other family that you can discuss it with? I think that can really help. What I did do is take Mum to see a couple of homes and I also (with permission) filmed them on my phone to playback when we got home as it was forgotten. I know it was quite daunting for Mum but actually going, meeting the staff and looking round certainly eased any of Mum's concerns. It might be worth a try - although I appreciate during the lockdown of most homes a full tour may not be possible - they may have some form of virtual tour and some kind of Skype or Zoom call to speak with the Manager?