Dementia

[Witt]

My dad has been diagnosed with frontal lobe dementia and alzeihmers. His deterioration has been rapid over the past year, including significant personality change as well as memory loss. He is now at a stage where he can't remember where he lives and he occasionally struggles to recognise my mum. He has also had a couple of episodes recently of wandering off on his own for hours and we have had to send search parties out to find him.

My mum persuaded us (me, my husband and my sister) to go on holiday with them this week to a holiday cottage 4 hours drive away. We were sceptical about whether it was a good idea but she was quite persistent that she needed some time away (I do realise that familiar surroundings are important for people with dementia which was part of my concern). For the most part it was actually fine and there were enough of us there to keep him entertained so he didn't get too stressed or wander off.

However, they had a bit of a crisis today coming home as he reportedly kept grabbing the steering wheel - we were in a different car so I don't know exactly what happened. When my mum got home she was stressed naturally and decided that it was mine and my sister's fault that this had happened because we had "decided to come home early from the holiday". Actually, we had only agreed to stay until today and he may well have done exactly the same thing whichever day they went home.

My uncle has now got involved as he wants to sort the problem out, which is understandable as he is seeing his sister at breaking point under a lot of stress. However, he thinks the solution is for my dad to go straight into a home. He isn't aware of others options (and has no reason to know about them as he hasn't needed to or had time to look into anything else). My sister and I have been trying to suggest to my mum for a while that she arrange some kind of respite care in their own home - a (potentially live-in) carer who could be a companion for my dad if my mum wants to go out for a couple of hours (he's no longer safe to be in the house on his own) and also someone to be there at night so she can get some proper sleep.

I am feeling a whole mixture of stuff at the moment - guilt that it has built up so much for my mum, anger that when we have offered her support to get things sorted out (sitting with her to make phone calls etc) she rejects it, frustration with myself that we didn't make clearer signposts to her about the risks of going away this week (agitation at the start and end about change of scene etc) but mostly great sadness that people (including HCPs) keep talking about my dad as if he is a problem (where the only solution is locking away in a home) when actually he is a wonderful man who has become very challenging to look after because of his illness.

We had some great times this week with him playing games and walking on the beach. When he is talking to my baby daughter or playing with her he completely reverts to his old self and you could believe there was nothing wrong with him.

I'm going to phone our local dementia support worker tomorrow and hopefully chat to her about what other options there are. Is it realistic to expect other options than going into a home?

[WynkenBlynkenandNod]

Sorry you're going through this. One thing that was proposed for my Mum was that she goes to the Day Centre for a day. Do you think your Dad might agree to that then your Mum can have a break ? SS can arrange carers to coe in up to 4 times a dayThe night times are difficult I think as there isn't really provision for them other than paying for a waking Carer which is expensive - I was told £120-£140 a night.

Does your Dad have a Care Manager at all? It sounds like your Mum needs a Care Aaessememt though I am a little dubious about whether they are actually any use. Have a look and see of you have any Admiral Nurses in your area. I'm afraid it all seems to be a bit of a minefield and what happens depends on where you live, how good the services are in your area and how loudly you shout. But I am probably a bit negative as we are pretty much in crisis with my Mum. Hopefully others will be along with more options.

[Needmoresleep]

There are a range of options delivering different levels of care, from the McCarthy and Stone type "retirement living" through sheltered to very sheltered and then a home. Trouble is that many options require you to be able to purchase something, or be very lucky with Housing Association/Council provision in your area. (Abbeyfields might be something to look for and other traditional charity provision.) Also providers need their residents to be safe. If your dad is wandering, this might not be the case. It sounds as if very sheltered/close care might be the best option for you.

GPs, priests, physios and a range of other community workers will have visited people and may be able to give you ideas.

Asking around and taking as much advice as you can is the way forward. As well as day care you might look at respite care. If the money is there, a week in one of those private care homes that feels more like a hotel could be the way to give your mother a break and change of scenery (she could either go or stay) and help her maintain her strength.

[Witt]

Luckily, money isn't an issue so as long as it's the right solution we can privately fund it.

The other thing I should have mentioned is he is only late 60s and still physically quite active (which is actually one of the issues in that he can wander off and really get quite far in a short time!) He doesn't need help with feeding or washing as such but it is more companionship and also a spare of eyes for my mum so she doesn't have to be on 24 hour watch to check he hasn't wandered off - he gets up several times in the night.

He also won't accept that he has dementia which means he won't accept any help from anyone other than my mum at the moment. He is shy and doesn't like meeting new people so asking him to go to a day centre for the day might be tricky.

My mum was told about a befriending service where he could be given a buddy to go out walking with. Unfortunately nothing has come up yet. Is that a service that a care agency could provide? A couple of hours for two mornings a week would be perfect.

[Needmoresleep]

My mums carer is a lovely young Hungarian. She did more hours initially so she could walk with her to the local shops and other places my mum would want to go, to help my mum find her bearings in her new home. She was really good and even took my mum for outings in her own car.

It does sound as if, going forward you are to avoid a home you will need somewhere with a 24 hour warden. Try googling extra or very sheltered accommodation, or close care. Social services should also have a list, but they dont always have private sector stuff.

Where my mum is is fab. A nice two bed flat, wheelchair adapted so quite spacious. Lots of the care stuff is not obvious, so more able less frail residents could simply live there independent of the services available. But the warden/reception/restaurant/handyman/activities are all there is needed. Something of this nature would also give your mum company and support.

That said your mum would have to accept being one of the younger residents. I assume when your dad passes away your mum will have a chance of resuming her former life or making a move to be closer to family. Therefore before making any decisions you should look at your dads prognosis and perhaps talk through with the Alzheimers Society. If his progression is likely to be fast, it may be better to simply see how long everyone can cope, ramping up the care as needed, either daily or using respite.

Oliver James has a section in his book about Dementia which suggests your mum decide in advance what she will not be able to cope with, as the trigger for when a home is needed. (I am not sure about the rest of the book but this seemed sensible.) Wandering off a certain number of times, some form of aggressive behaviour, falling, whatever. Dementia is awful and your mother is suffering bereavement in 1000 slices. There will almost certainly be a point when a home is needed, and when it will be the best and safest point for him. Your mother will be torn between feeling she cannot cope and guilt at considering a home. The best you can do is research options with her so you are all ready when a decision becomes unavoidable.

Good luck. Poor you.

[Witt]

Thank you everyone for your comments and suggestions. My mum and I spoke to the dementia support worker this afternoon and we have worked out a way to introduce one day a week 1:1 care in a day centre intially hopefully going up to two days a week. Hopefully once that has got going we can start putting plans in place for what needs to happen next. Needmoresleep the idea of trigger points is very good and I'll mention that to my mum.

[Lilymaid]

There's a dementia thread here that you may find helpful.

[Numberlock]

Some advice on the finance side as you say you can privately fund it. My mum's dementia care home is £39,000 a year which is by no means the most expensive. I have a shortfall of £20k a year to find. Just making sure you've done your maths and if you've considered all options to protect finances and fund care long-term, possibly also for your mum too at a later stage.

[Londonsw8]

My partner's mother has dementia where is the self-group in clapham

[Londonsw8]

My partner's mother has dementia where are the self help groups in Sw8

[whataboutbob]

Hi SW8 if clapham is in Lambeth then the best step is to contact the Lambeth branch of the Alzheimers society ( doesn't t matter what the exact diagnosis is) and take it from there. Good luck.