Looking for advice for a family member with dementia

Britwife

Hello, not sure where to post this.

My in laws care for their sister who has dememtia. They just got her moved closer to their home to save on travel but it has caused problems. What was common to her has now changed and police have had to get her home 3 times and she has only been there a week. She had a GP appt today and he told my inlaws that she is not to go out alone and they need to call her day and night to make sure she is home.

The problem is, they are in their 70's and 80's and it's taking a tole on them. They have been caring for her for a few years now. They have health issues as well. Social services have been given an urgent call but don't know if they will be able to help on such short notice. It's upstetting becasue they are older and can't keep up with her as it is.

The other issue is they are due to go away for a fortnight in just over a week. They really need this holiday.

I'm looking at suggestions on how to get help. There is no room at their sister's flat for a spare bed so nobody can stay with her. My husband and I are due to take our children on this holiday with them so we can't help and we don't really have anyone else, small family.

My last resort suggestion is for my husband to take our children and I stay behind to take care of her. In my heart, I can't let them miss this break. They need it bad and my fil's health isn't so good and they may be their last year to get away with the grand kids. He wanted to go fishing while there but after a fall, they don't trust that he is stable enough. So as you can see, they do need it and I wont let them miss it.

Any suggestions on hiring a carer for just a few hours a day? Realistically, how much are we looking at hourly? I really appreciate any input, I have no idea where to turn.

jhe

has the sister got a social worker, if not ring social services and speak to the duty social worker,is the sister living alone? there could be respite care accommodation available, surely the doctor can contact social services if the sister is a risk to herself, if sister is living at home there should be home care available at the very least.
just to add. in our area we have a warden service, this entails a unit installed in the house with a personal alarm that could be activated if your sister needed help at any time day or night. they also can install door alarms that activate with a voice telling the person to not go outside when an outer door is opened, in my area it is called carelink.social services have a duty of care and social workers should be informing you of services available

kezzygirl

A carer sounds a good idea,no idea as to cost,it depends on area i suppose.
Do you have any friends who wouldnt mind popping in on her?

moggitymog

contact local social services and request an assessment, may also need a referral to the community mental health team (GP needs to refer)

Errata

Sounds like she's completely disorientated, and probably distressed. I guess the GP was trying to be helpful by suggesting she's phoned several times a day, but that's no help to her or anyone else if she's wandered off and nobody knows where to.
In your shoes I would stay with her yourself and use the time to get things sorted out - it doesn't look like she's safe living on her own, and carers calling on her twenty times a day isn't going to change that.
It's a very difficult situation for everyone concerend, but my view is that the lady's wellbeing and safety should have primacy over holidays, not least because if some tragedy happens to her whilst the family are on holiday and one of them could have stayed behind, the family will find it difficult to forgive themselves.
The only other option would be for her to stay in a care home whilst the family is away and unable to do anything to care for her and keep her safe. She would have to agree to that, it may make her feel even more confused, it would cost money and it may not be easy to find a place at short notice, although social services would help identify one.

Britwife

Thank you all so much for the advice, going to pass it on. My mil said social services are supposed to call tomorrow and see what they can do. I'm going to look at the aids suggested as well. I agree that we can't call all the time. I really think the move was too much on her but it had to be done. The buses out to where she lived only run every 2 hours and not on all days so very difficult to get to her.

I do agree that family comes first and that's why I offered to stay behind if we don't get any help so she won't be left alone.

thanks again.

babymoo

Hi

I really feel for you and it must be so difficult on your in-laws aswell. Is there a reason why this lady can't go and live in a care home where they are trained to deal with dementia? Even if your in-laws went to see her daily or something? I realise moving someone who is that fragile over and over isn't wise but its not fair on your in-laws either. It sounds to me like she needs round the clock care.

jhe

i worked for social services for many years. as much as you care for the sister you also need to have lives of your own. i would stress this to social services and tell them(dont ask them) you need their help and support, (this doesnt make you uncaring people)there is help out there and it is available to support the sister whether to assist her living in her own home or in residential care.
its probable that her change of home has made her confusion worse but she may settle better in time. either way dementia is usually progressive so in the long term you need continuous support for the sister

Fuzzy_Duck

Totally agree with jhe and babymoo. It is very difficult to care for someone to dementia, and it must be taking a serious toll on your poor in-laws. Depending on how severe the sister's dementia is she might benefit from 24 hour care with either a live-in dementia carer or moving her to a specialist home.

I think it's important to remember that caring for someone with dementia is not the same as caring for someone frail. With specialist dementia care the person is cared for by someone knowledgeable, who communicates with them effectively and plans activities that engage them and enhance their lives. Family and friends don't necessarily have these skills, and even if they had all the free time in the world and the willingness to give it, how can someone so exhausted and stressed from a lack of a break provide satisfactorily care?

I've had to watch my parents caring for my grandparents and whilst I feel sympathy I also feel bitterness by how much my parents have aged through the stress of it all, and frustration at how little social services help them. You say they are in their 70s and 80s- they should be taking some time out for themselves and enjoying their retirement. I agree with Errata that the sister's wellbeing is important but I also feel that they are getting on themselves in years- it would awful for them to end up frail in later years wishing they're gone on a few more holidays with the grandkids whilst they were still able.

My advice would be to get on to social services- as jhe says don't ask, tell them- and explain the situation to give them time to get a care package in place for those two weeks. Emphasise the stress your in-laws are under, and how much they need respite care. When they return they really need to look into getting the sister 24 hour care or moving her into a specialist care home. It's a huge stress getting it sorted, but once it is done your in-laws will be a lot less stressed and the sister will be getting the care she needs and a much-needed routine.

Britwife

Thank you all so much for the support. Havent heard from Social yet but it's only been a day and I can understand how many they have to care for as well. We had the inlaws over for dinner and they were quite adamant that they wouldnt have let me miss my holiday but in the end it wasn't their choice. They needed this break more than I did and I really didn't want them to miss out.

In the end, a private respite room has been found just across the road so we will all be able to go away. My auntie does recognise that she needs more care and at dinner tonight we discussed that her best option is full time care.

I had a feeling the move has had an effect on her and we feel bad for moving her but we really needed her closer to us so that we could all take care of her as a family. My inlaws seemed so much more relaxed tonight and myself and my sister in law had taken over cleaning her flat a while ago to free them up more.

Just thank you all so much....

Torry_Quine

Glad to see that things seem to be improving. Hope you all have a good holiday.