Advice on respite care

[Justine13]

Hello all

My parents live separately from us in a flat, my Dad is 80 and has Alzheimer’s and my mum is 76.

Dad has been deteriorating for some time but during this lockdown things have got much worse. He seems more lucid in the morning and evening but has a period of up to 5 or 6 hours very afternoon where he is extremely distressed and agitated. During these episodes he has no idea who my mum is and keeps trying to leave the flat, saying he needs to get his passport and get away or visit neighbours and friends. He often phones me or my sisters and says he is being held against his will and needs to get away. He hasn’t been physically violent but does shout at her a lot. Mum says he always apologises the next day but very quickly deteriorates again, she describes it like a switch being flicked.

Obviously it is really hard not being able to visit and help her and she now says she is at the stage where she just can’t cope any more and can’t see a way out.

What we would like to investigate is some respite care and possibly a care home but not sure how this is all working in the current situation. Will carers still come to people's homes? I just feel that she can’t go on like this and at the very least needs someone to care for him for a few hours in the afternoon so she can go for a walk, or even sit in another room and read. She has said she feels the time is right to consider a care home, which she has never said before, she is just very unsure how this would work. They are financially secure so I think it would have to be paid care.

Would be grateful to hear from anyone who can offer some advice.

Thank you.

 

[Bunpoots]

Welcome to Dementia Talking Point @Justine13

It does sound a very difficult situation for you mum. I suspect your dad is sundowning in the afternoon which is when tiredness makes the PWD more confused than usual . I never experienced this with my dad probably because he napped on and off all day but I know others here have. I think it’s worth speaking to his GP to see if any meds can be given to help keep your dad calm at this time.

Carers are still doing home visits and the quickest way to get this started is to phone around local agencies and see what is available. You’ll need someone with experience in dementia and Alzheimer’s dementia connect should be able to advise you on what’s available in your area and which are the best agencies and carehomes for people with dementia . I imagine it’s difficult to get a place in a carehome ( especially for respite) at the moment and I don’t believe they are allowing visits from family members at this time.

I can’t get the link to Dementia Connect to work for me at the moment but you’ll find it On the Alzheimer’s Society website.

 

[Alex54]

Obviously it is really hard not being able to visit and help

Are you sure? I was under the assumption that family members can act as unpaid carers.

 

[Pete1]

Hi @Justine13, welcome to the forum. I agree with @Bunpoots it does sound like sun-downing, I experienced it with my Mum. Your Mum's description of a switch being flicked resonates with me, with Mum it was pretty much the same time every day (around half four). It is common for the person sun-downing not to recognise their own home and have a desire to 'get home' (normally a childhood home), and may not recognise those around them. It is was the most difficult challenge I dealt with. I'm afraid applying logic just doesn't work and often causes increased agitation - it took me a long time to work that out! Your Dad will be frightened as he genuinely won't know where he is, which must be awful. So what he needs is reassurance that Mum is there to help him. What I finally ascertained with Mum was that she was worried about the 'owners' of her house coming home, so my self and the carer ended up saying that they were friends of mine and she was doing them a favour looking after the property whilst they were away, we can go home tomorrow - and of course in the morning Mum had no recollection of it and was absolutely fine....until the repeat performance at half four. Has he ever left the flat?

It must be extremely difficult for your poor Mum to manage, I expect she is watching the clock all day waiting for the dreaded sun-downing time, and I'm sure distressing for you and your sister receiving the call. I'm afraid it doesn't get any easier, there are just coping strategies to get through that day. I think that respite would be helpful for your Mum, although at the moment it may not be possible due to the lockdown. I think having an honest conversation with Mum to find out exactly what she is having to do for Dad each day and the difficulties she is having will help you get some home care support for them in the interim. Do you or Mum have Power of Attorney for your Dad?

It is worth Mum speaking to the GP to see if they can firstly test for a UTI (which can cause increased confusion) and if they can perhaps prescribe something to help alleviate his agitation.

All the best keep posting.

 

[Grancan1313]

I would call social services and make a referral. Only urgent assessments are being carried out for care / respite but if it’s urgent or extreme risk of carer breakdown id call. Depending on their financial situation and savings threshold whether they would need to pay full cost or just contribution. Hope that helps

 

[rhubarbtree]

If your Mum says she cannot cope and is thinking of care homes, you should believe her. I know from my own experience it is a terribly hard thing to accept and verbalise. The care home my husband lives in will take new residents but they will be on the quarantine corridor for two weeks. This home is extremely well organised and has had no cases of covid. If you think they will be self funding you do not need social services but can use the internet to find suitable homes and ring them. Once again from my experience, only look at EMI homes, they know how to deal with dementia. Of course, if you are only looking for respite, two weeks in quarantine will not give you a real idea of how your father will settle in the home.

I really feel for your Mum as I was in the same position myself a few months ago. Choosing care was a big decision but I have to say my husband has settled and is probably happier than he has been for years.

 

[JDD]

Hello all

My parents live separately from us in a flat, my Dad is 80 and has Alzheimer’s and my mum is 76.

Dad has been deteriorating for some time but during this lockdown things have got much worse. He seems more lucid in the morning and evening but has a period of up to 5 or 6 hours very afternoon where he is extremely distressed and agitated. During these episodes he has no idea who my mum is and keeps trying to leave the flat, saying he needs to get his passport and get away or visit neighbours and friends. He often phones me or my sisters and says he is being held against his will and needs to get away. He hasn’t been physically violent but does shout at her a lot. Mum says he always apologises the next day but very quickly deteriorates again, she describes it like a switch being flicked.

Obviously it is really hard not being able to visit and help her and she now says she is at the stage where she just can’t cope any more and can’t see a way out.

What we would like to investigate is some respite care and possibly a care home but not sure how this is all working in the current situation. Will carers still come to people's homes? I just feel that she can’t go on like this and at the very least needs someone to care for him for a few hours in the afternoon so she can go for a walk, or even sit in another room and read. She has said she feels the time is right to consider a care home, which she has never said before, she is just very unsure how this would work. They are financially secure so I think it would have to be paid care.

Would be grateful to hear from anyone who can offer some advice.

Thank you.

I think if she needs help you should go - just follow the washing hands rule. I’ve posted a long message as I’m now staying with my mum as she has deteriorated and needs someone sleeping in, she is scared of men so my brother can’t help