If respite care with relatives goes wrong - how do they cope?

[Sparenib]

My mum-in-law - recently diagnosed with dementia - is soon due to stay 2 weeks with her brother's family while her bathroom is given a complete makeover (she's disabled and unable to bathe without carer's support). On a recent overnight visit to other family members she has become so agitated and unco-operative that the relatives have phoned us to say they can't cope - we have dashed over to collect her and bring her back to her own home. This time, that option is not possible because her flat will not be habitable while the new bathroom's being installed. Her brother lives 180 miles away. What are the options if the relatives say they can't cope during the renovation time? Is there some sort of emergency respite care? What can we advise her brother's family to do if she becomes agitated and distressed?

 

[Kathphlox]

Hi sparenib

Was this just a test run prior to the expected bathroom work?

If that's the case, I would get in touch with SS and sort out some respite care near to home, they can move very fast if timelines are urgent.. just a matter of a couple of days in fact. Give them a ring and set the ball rolling

 

[ggma]

Hi and welcome.
It is not unusual for people with dementia to become agitated and distressed when in situations away from home, everyone reacts differently, but for some people taking them away from everything they know and their own routines causes real upset. This is ok if families are prepared to cope with the reaction, and give someone time to settle.

It is a very upsetting for everyone, when you are just trying to do your best, but 180 miles away is a long journey, and I think you will find that any respite would have to be offered by the local authority where your Mother lives, and that getting it in another area would be very difficult.

 

[Sparenib]

Thanks for your quick responses. Unfortunately, the respite care with relatives starts tomorrow (Sunday) for a couple of weeks, so we have no time to organise something closer to home. About 3 weeks ago I did find a care home willing to take respite guests - but they needed to have a referral from Social Services. Mum's social worker was not available at the time and is still off work, so we took the option of Mum staying with relatives. We didn't realise we could have pressed harder for help. Basically, we're looking for suggestions about how to help the relatives cope if Mum gets agitated; do they distract her; or explain the situation in the hope it eventually "clicks"; carry on as normal; call their local social services? When we're turned up in previous "emergencies" to take her home, she's been absolutely fine, as if nothing had happened, and not mentioned being distressed or wanting to go home.

 

[Chemmy]

Maybe they should join this forum

 

[Saffie]

I would think that explanations would not be of much use, though it depends how far down the dementia road your mother is at present. Logic disappears very soon with dementia and anyway, any explanation would probabaly be quickly forgotten.Far better would be for your relatives to distract her as much as they can. Perhaps some soothing music as well might help. I hope it works out for all concerned and the new bathroom is a great success.

 

[Christin]

Hello Sparenib, welcome to Talking Point.

I just wanted to pop this AS factsheet re Respite in for you and your relatives. It does have some useful tips.

I would suggest a list of emergency phone numbers, and all the little things that might help your mother in law settle, and make her feel at home. If she has a routine it might help to follow that as much as possible. As some have said above, a lot may depend on how advanced her dementia is. We found that distraction can help a lot, perhaps she might just enjoy their company, or watching a favourite film or listening to music. It can be trial and error.

Very best wishes, and as Chemmy says, perhaps your relatives might like to join TP too. I am sure they will receive a lot of support should they need it. Please let us know how you all get on xx

 

[Sparenib]

Wow - thanks to all of you for your replies. Chemmy - easier said than done! We'd really be happy if the relatives would appreciate Mum's condition - but unfortunately they all have their own take on what's best - ranging from benign denial to bad-mouthing us (and her) for not "snapping out" of whatever's the matter. Saffie - luckily, she's staying with her closest brother, who can chat til the cows come home and that's very comforting for Mum. The down side is that he is ineffectual if there's a crisis - he goes into "freeze" mode and doesn't call for any intervention. Lastly, Christin, thanks for the linked info - I wish we'd had this a couple of weeks ago; nevertheless, it's really useful for future reference esp respite care - Mum's not the only one who needs to get some time away! Thank you all again for your kind and ready help. I'll post with news of the new bathroom!

 

[Chemmy]

We'd really be happy if the relatives would appreciate Mum's condition - but unfortunately they all have their own take on what's best - ranging from benign denial to bad-mouthing us (and her) for not "snapping out" of whatever's the matter.

Don't be tempted to 'dash over' (180 mls, I think not) and rescue the situation this time. They will cope if they have to, just like the rest of us, and are clearly going to have to learn the hard way

Funnily enough this might turn out to be a blessing in disguise as you might find this makes planning your MIL's future a bit easier once the extent of her problems becomes more apparent to the wider family.

 

[Sparenib]

Well, Mum was dropped off at the halfway point this morning and was delighted to be going "on holiday" for a while at her brother's. We've been frank with him about what he can expect (he phones her every day so should be aware of how she is). Fingers crossed that all will be well.
Meanwhile, she has been for an assessment at the local memory clinic and been prescribed Aricept. We can't pick up the prescription til midweek, and then only at the pharmacy at the memory clinic. Firstly, has anyone any tips or comments on this drug - and secondly, why they do restrict the prescription to be dispensed by the memory clinic (miles away) rather than giving us the prescription to be filled by our local pharmacy?

 

[PamD]

' ... Aricept. We can't pick up the prescription til midweek, and then only at the pharmacy at the memory clinic. Firstly, has anyone any tips or comments on this drug - and secondly, why they do restrict the prescription to be dispensed by the memory clinic (miles away) rather than giving us the prescription to be filled by our local pharmacy?

No idea why you can't get it from local pharmacy, unless it's something to do with monitoring her at first? Do ask the Memory Clinic about it. Mother gets hers on a prescription from GP (although it's the Memory Clinic who decide that she should be on it and come and see her every 6 months to check she's still at an appropriate stage for it). We just order online from GP surgery every month, and it arrives at the village pharmacy in a couple of days. Brilliant service.

As for comments on the drug... Mother has been on it about 10 years, and is only declining very slowly: still a bright (in some ways) 94-year-old who can play Scrabble and do puzzles, but no short term memory and gets terribly confused in the mornings.

Good luck!