Are there Other options - instead of a care home?

[Mudlark]

My mum cannot live alone, she is currently in a dementia ward awaiting a respite placement, her husband has had a heart attack and cant care for her any longer at home. I have two young children and no spare room. My mum is terrified and scared and I want to try and find something that will be better for her than a care home. Are there any other options?

 

[Violet Jane]

A live-in carer is an option but it's not cheap. Most LAs will not fund live-in care and so it's only likely to be an option if your parents are self-funders. If your mother needs constant supervision then you will need to pay for an additional carer to cover the two hour break each day which most reputable agencies will insist on. My husband and I have just arranged live-in care for an elderly friend and so feel free to ask me any questions you want.

 

[Mudlark]

A live-in carer is an option but it's not cheap. Most LAs will not fund live-in care and so it's only likely to be an option if your parents are self-funders. If your mother needs constant supervision then you will need to pay for an additional carer to cover the two hour break each day which most reputable agencies will insist on. My husband and I have just arranged live-in care for an elderly friend and so feel free to ask me any questions you want.

Thank you for your reply. My mother would be a self funder. They are currently both in hospital, but theoretically once stepdad is recovered from heart opp they can return.
They live in a bungalow ( moved in 2 weeks ago) it has a room where a carer could sleep with en suite.
Is 24 hour care literally 24 hours? Do the carers do eveything for the person in their care - or are they flexible. Did your elderly friend want care - I fear my mother will not WANT care even though she needs it.

 

[Violet Jane]

I don’t know whether this is the case with other agencies but my friend’s live-in carer works 11 hours a day in two shifts: 8am to 2pm and then 4pm to 9pm. After that, she expects to go ‘off-duty’ and have the rest of the evening to herself. We are having problems because my friend won’t go to bed until 11pm or midnight and wants a wash beforehand and so the carer is working beyond her contracted hours and is exhausted (apparently, most clients go to bed early). We have therefore had to engage a second carer for four hours in the evening, temporarily we hope, to support the regular carer. We are trying to get my friend to go to bed earlier but if this is not successful we may have to cancel the live-in care because getting a second carer in is making live-in care extremely expensive.

A live-in carer must be able to sleep at night. Up to two interruptions is ok but if the client requires attention more than twice a night the agency will say that the client requires a second ‘waking night’ carer who is essentially doing a night shift. I think that this is pretty standard.

The live-in carer will work a number of weeks and then have a week or two off. The precise arrangement depends on the agency and the carer. The agency will find another carer to cover the regular carer’s time off.

As we are finding, there are limitations to live-in care. There is flexibility but (and I don’t know whether this is just this particular agency and carer) the carer still has working hours and isn’t at the client’s beck and call 24 hours a day. I suspect that a live-in carer wouldn’t deal with very challenging behaviour.

If you want to go down the live-in care route then you need to be completely upfront about your parents’ difficulties. You mention wandering. If your mother is trying to get out of the house at night and is disturbing everyone’s sleep then this might be a problem.

My friend agreed to live-in care because the alternative was a care home. She was found to have capacity and chose live-in care. She actually stayed in a care home temporarily whilst we were getting the house ready for live-in care and finding a carer but was very clear that she wanted to return home.

I only have experience of one agency and one live-in carer and I don’t know how typical they are.

 

[Bod]

It will be easier for all concerned if mother went straight from hospital into a Care Home.
Live-in care only really works for "easy" short term care.
Choosing the right Care Home, could mean father could join her, albeit in separate room's.

Bod

 

[MartinWL]

I think @Violet Jane explains the limitations very well. I looked into this option for my mother but it soon became clear that live-in care is not 24 hour care. My mum had restless leg syndrome and walked around at night to settle it, a sleeping carer would not have been suitable to manage that. Also there are difficulties with some carers, rapid turnover, communication problems and so on that mean getting the right person is far from assured. In a rural area with minimal public transport a live-in carer would either need a car or would be unable to lead any kind of private life so that was unlikely to attract good candidates. For all these reasons a care home was the only practical option.

 

[melli]

Hi, I think that Bod is spot on, Trial the care home - you can do respite which is short term. It gives you the breathing space to walk through all the options whilst she is safe and cared for. Access to doctors are easier if anything should need re treating etc. They also will be able to see to your Mom 24 hours a day, and that the only real way you will know what level of help she needs.
I did this with my Mom convinced she could return home, however quickly became apparent that i didn't know she was wandering at night etc. Had she gone home straight from hospital I fear we may have been dealing with a much larger problem. Also makes the selling job easier !! As its a nicer alternative to staying in hospital so it becomes a better bargaining point !

 

[Tilly13]

Hi I looked into 24 hour care at home for my parents but it was pricey and once my parents used up their savings we would have had to try to release equity from their house. They couldn't finance 24 hour care and running the house and food bills.
Also my Mums' Dementia progression meant she was becoming confused about living in her own home and having someone living there permanently would have caused more agitation, anxiety and confusion.

I always was unhappy about them going into a Care Home but was lucky to have the luxury of time to visit before a crisis . I visited all locally and I was aware I wanted them to not have to move as their Dementia progressed.
Eventually I found one and they have a bedroom where they sleep together and another room set up as their ' private lounge'.
They seem to be settling in well.

 

[Mudlark]

Thank you Violet Jane for that very comprehensive and incredibly useful reply - just reading it confirmed all my fears and together with what other people have written here has made my mind up, which was what I needed.

She is currently on a dementia ward while her husband, my stepdad, undergoes a further op to have as second stent fitted, the hospital see her as a bed blocker, which of course she is, and are looking to either persuade us to put in care so she can be discharged when her husband is, probably next week, or find a respite place in a care home. I now am gong to fully push for the latter.

The crisis that is happening to them is what we feared would happen and I think we must use it as an opportunity to move her into a care home.

Such sadness. Thank you all very much.

 

[Violet Jane]

I think that you will have to find a care home for your mother, at least for respite. There must be some doubt about your stepfather's ability to look after himself at home even without your mother there. He might well need carers in for a while while he convalesces and regains his strength. This might be provided for free by SS under a reablement type scheme; I would push for this.

It's so hard for you dealing with both your mother and your stepfather with their different needs at the same time. I think that you need to find out from the medics whether your stepfather can safely continue to live your mother even if you brought in a live-in carer. He will still be around your mother's difficult behaviour, and there must be some doubt about whether your mother would accept care from the live-in carer.

A hospital ward is not a good place for a PWD and it's not surprising that your mother is scared. A good care home should be a much better place for her.

 

[Frank24]

Hi there mudlark,
You’ve had a good description on live in care here and most agencies work on this principle if they are decent. My mum had live in care for 2 years with varying degrees of success and I must say live in car isn’t the holy grail that it’s made out to be. My mum is on a care home now which is much better for her, in terms of the quality of care and less stressful for me. At times I felt I had two people to look after my mum and her Carer. Some of the people attracted to live in care are unusual characters with unconventional lifestyles. It’s very hard to make this work and the decision to place someone in care only gets harder I am afraid the more you delay it. Take care x

 

[Mudlark]

Yes, Frank24, I am now of the opinion we must not delay. Being on the ward in hospital is awful for her, it's very raw and with no respite from the rather tragic women that are bed ridden in it. The hospital will fund I think the first 4 weeks. It is sad that she may have to move twice , once from hospital and then again from her respite care home to a permanent home but i think unavoidable. I wonder if I am meant to have a social worker or anyone helping me - or perhaps it is just down to me to sort it all out.

 

[Jale]

When Mum went into her nursing home she went there from the hospital , initially for 6 weeks assessment- the hospital social worker worked really hard for her/us - of course this was all precovid so things may have changed. We told mum she was going to a different hospital which she accepted, and during the 6 week assessment we made our minds up that she would be better staying there rather than moving again.

 

[Violet Jane]

If your mother does not agree to move to a care home then she can only be compelled to move there if she has lost capacity to decide on her living arrangements. You may therefore need SS to carry out a capacity assessment. Does anyone have PoAs for your mother? If not, then SS will probably make the decision about where she should live.

 

[Mudlark]

I do have LPA for my mother - the hospital have made a assessment and concluded she does not have mental capacity. The consultant mentioned something today about Deprivation of Liberty, DOLS, but not entirely sure what that was about. I am dealing with an over load of information from both parents and their health issues , so not rally taking it all in.

 

[canary]

DoLS (deprivation of liberty safeguarding) is nothing to worry about.
When someone needs to be prevented from leaving in order to keep them safe and they have lost capacity then a DoLS order is applied for. It is pretty routine in hospitals and care/nursing homes for people with dementia who dont want to be there.

 

[Violet Jane]

Do you have both types of LPA for your mother?

 

[Bunpoots]

Hi @Mudlark

My dad also went straight from hospital to his carehome, initially for 4 weeks assessment but he ended up staying.
The hospital social worker sorted everything out and, although I was kept informed, I wasn’t given a choice about where he went - there aren’t many options for people with severe dementia near me. Hopefully everything will be sorted out for you and your mum.

Dad didn’t want to go into a carehome and I didn’t want him to but, once he was there and settled, I realised he was actually happier, and better cared for (even with 4 care visits and a daily visit from me too) than I had managed to keep him at home.

 

[Frank24]

Yes, Frank24, I am now of the opinion we must not delay. Being on the ward in hospital is awful for her, it's very raw and with no respite from the rather tragic women that are bed ridden in it. The hospital will fund I think the first 4 weeks. It is sad that she may have to move twice , once from hospital and then again from her respite care home to a permanent home but i think unavoidable. I wonder if I am meant to have a social worker or anyone helping me - or perhaps it is just down to me to sort it all out.

I got social services support as I was in Carer breakdown and arranging with no support from any family members. I arranged this through the memory clinic

 

[AmandaJones]

Thank you for your reply. My mother would be a self funder. They are currently both in hospital, but theoretically once stepdad is recovered from heart opp they can return.
They live in a bungalow ( moved in 2 weeks ago) it has a room where a carer could sleep with en suite.
Is 24 hour care literally 24 hours? Do the carers do eveything for the person in their care - or are they flexible. Did your elderly friend want care - I fear my mother will not WANT care even though she needs it.

Hi. This is a mirror image of my Mum's situation. She was diagnosed with mixed dementia early last year and after a couple of falls at home, ended up in hospital. She was released back home with carer visits 3x day (funded by the NHS for 2 weeks to assess the situation). Mum continued to have falls between the carer visits and each time the carer found her they had to call an ambulance as they are not allowed to help her up. This repeated itself approx. 3 times and after the last hospital visit, Mum was sent to an NHS care home on a discharge to assess basis. I have to say, the home wasn't great. Whilst it was a 'safe' environment for Mum, she was not offered any one to one care, so didn't eat, lost lots of weight and had her walking frame taken away from her to prevent her wandering into other people's rooms. I wholly disagreed with this final point. I had no choice but to move Mum to a private care home 3 weeks ago and I felt extremely pressurised by the assigned social worker to sort it out. Now we are pursuing a CHC assessment at the private home, but I'm afraid in the meantime we are paying a mere £1400 per week for the care. Mum had the option of live-in carers, but this was indeed 24/7 and I couldn't see a benefit.