Live in care

[jstmcm]

I am looking into getting live-in care for my mother. Can anyone who has organised this for their parent tell me how it works in practice? My mother doesn't need personal care at the moment, but she is a danger to herself, has left gas ring on unlit, wandered off and got lost, had two bad falls, left switched-on iron flat on ironing board and many other things. She won't want the carer being with her all the time, and hates people doing things for her (even when she can't do them herself), but she needs someone around all the time to keep her safe.

What are the things to ask or look for when I talk to the agencies that provide live-in care?

What happens when the carer has her 2 hours off in the afternoon? My mum has a sleep every afternoon, but it won't necessarily be for 2 hours so what happens then?

I would be very grateful to hear how the arrangement has worked for others, especially for other people where the don't need personal care but need to be kept safe.

Many thanks
J

 

[Katrine]

My mother has had live-in carers for nearly 7 years. In her case she does need personal care, as well as housekeeping and ensuring her health and safety. From talking to many of her carers, their more challenging placements are with clients who are resistant to care. From the POV of the caree, a stranger has moved into their home and is trying to take over. Women are especially resistant to another woman challenging their housekeeping role.

Worst case the client can get verbally and physically aggressive and demand that the carer leaves. A carer cannot stay with someone who is aggressive, but neither can they leave them on their own if they are a danger to themself. Unless there is a family member on call who can calm the situation, the carer is likely to be subject to repeated attacks, both verbal and physical.

Having painted the bleakest picture, I have to say that live-in care works well for many people, provided that they can adjust to having a helper/companion. My mum accepted the cooking, cleaning, shopping, personal care support, but in the early years played mind-games with the more gullible kindly carers, as a way of exerting some control over her life. She was aware that she needed the help of these strangers but at the same time she resented them.

She particularly refused to get up and dressed and wanted to stay in bed in the dark all the time. She would say "this is my house and you can't force me". Eventually I insisted that she got no meals in bed. She has to get up and sit at the kitchen table. If she is genuinely tired or unwell she goes back to bed afterwards. At least that way she gets a cardio-vascular workout and avoids DVTs and pressure sores. She doesn't have the understanding about the risks to her health of her preferred 'choice' to avoid moving around. To her it is an uncomfortable effort. She needs her carers to follow a care plan that we have developed over time which is in her best interests.

The 2 hours time off has been problematic. At first the carer went out when my mum had her afternoon sleep but on a couple of occasions she got up and went wandering in her underwear, so obviously was no longer safe to leave alone. We then got an agency carer one afternoon a week so that the carer got proper time off without being mentally on duty. Then the agency couldn't get anyone to cover her rural area. Now she has 2 carers living in together so they get time off in shifts. It can involve some creativity, and should be discussed honestly with the agency when you negotiate your contract.

 

[jstmcm]

Many thanks for your reply.

My mum doesn't want anyone living in, but seems to reluctantly accept that she needs it (the GP and District nurse have told her she has to have 24 hr care as well as the family). She doesn't like me doing things for her, but at the same time some things she is either not safe to do on her own, or the results are not good. i.e. she insists that she can still cook her lunch, but the only thing she can do - grilled steak - is always so overcooked that it is pretty much inedible. It takes her hours to eat just half, then she keeps the rest for the next day, when she reheats it, which must make it even tougher! If I ask her if I should cook it for her she says no, but if I just go ahead and do it she wolfs down the lot pretty fast and keeps saying how lovely it is.

Mum really just wants to be left alone. When I am caring for her I bring my computer down and carry on with work, so that she is left to potter about on her own but I am here to keep her safe, stop her wandering off and do what I can in terms of cooking, housework & care, keeping her company when she wants it. Will a carer do that?

J

 

[Katrine]

I see that nobody else has replied, so am bumping your post to get views. Live-in care is well worth trying - I hope I wasn't too discouraging in my first reply. When talking to agencies ask lots of questions, and if something occurs to you later then ring and check. They will be getting lots of money from your relative as a private client, so as the client's representative you have the bargaining power. If you don't like what they have to offer you won't choose them, and they know it.

You will want the carers to be well trained, so ask what training is given. A good agency will offer carers regular refresher courses as well as mandated training. It is important to have carers with dementia training and experience. Not all carers have this because not all elderly clients have dementia. You would think carers would all be dementia aware, but it is not the case. You must insist on having carers that match the specific needs of your relative. If, in the event, someone proves unsuitable, tell the agency and ask for a replacement.

Here I go being pessimistic again! I don't mean to be. I am trying to say that you can make live-in care work very well provided that you keep your wits about you when setting it up, and by monitoring the situation as time goes on. Good luck.

 

[Katrine]

Cross posted with you! I will think about what you ask..

 

[Katrine]

Carers don't have to be in your mum's company all the time but they can offer companionship and the opportunity to go outside the home for social activities. If the carer lets your mum potter around it depends what she is doing by herself. If she's using the iron or dismantling the TV then obviously the carer would need to intervene and distract her. Carers will be happy to let the client have their own space, if this is safe.

Conversely, some clients who are used to servants don't take kindly to the carer occupying their living space! BTW, the carer will require a suitable bedroom with perhaps a chair, TV etc. so they can be comfortable away from the client.

I see the kitchen as the most likely area of conflict. If she will accept the carer making meals, as you do for her, that will be fine. You won't know unless you try.

I recommend having an agency carer for a 2-week trial. The results of your experiment will inform your longer-term planning. So much depends on how your mum responds that you are not in a position to know if it is a suitable solution at the moment.

PM me if you want the name of the agency that I use. Katrine.

 

[jstmcm]

Thanks for this. When the live-in care started, how much information did you give? I am going giddy thinking of all the things I would want the carers to know. I will be at the house to hand over to the carer for the trial, and am starting to make a list, but I think it could take days to try to explain all Mum's likes, dislikes, routines, funny little ways, etc.

How long does one carer generally do before they take time off? Do you have the same couple of carers swapping over every fortnight/month/whatever, or is it a succession of different people?

How do you manage the money situation? i.e. my Mum's spending money. When I take her to the local shops she gives me her debit card and announces the card number loudly every time (even though I have known the number for years and try very hard to stop her telling the whole shop every time). I assume we have to give the carers the card number and hope they are honest? My brother deals with Mum's account so would see all the payments going through.

Sorry for all the questions.
J

 

[Katrine]

Gather those notes and start writing a care plan. Think of the main areas of daily living and use these as your section headings. I recommend a separate A4 sheet of likes and dislikes. Create a folder in an A4 ring binder. Include details of medical and family contacts.

Who will organise repairs if appliances break down? You will need to look at appliances, utensils and furniture to be sure things the carer will use are safe and comfortable. Simple instruction sheets for appliances and central heating would be useful too. Many carers come from South Africa and are unfamiliar with our heating and laundry appliances.

Imagine yourself arriving in a stranger's house and consider what you would need to know in the first 48 hours. Carers are quick learners, they have to be. The carer can always ring you for advice.

Don't worry too much about food. Unless your mum has allergies she may enjoy some new dishes. Most of our carers are excellent cooks.

We have developed relationships with several 'regulars' over the years. Even so, people move on, so you need to keep cultivating the really good ones to encourage them to return. With our agency the standard booking is for 2 weeks, but I encourage longer bookings for continuity and to reduce transport costs. Each year I pre-book as much as I can with regulars, then the agency provides new people in between. Some are great, some less so, but I then filter out the ones that didn't suit so well.

Don't give carers the bank card, it's not fair to them because it is not actually legal to do this (against bank rules). I bought a CashPlus MasterCard in my own name. I load this with housekeeping money by standing order from my mum's main current a/c. Carers have the PIN. I can check online to see the current statement. If the card was lost or stolen there would never be more than £400 available, so it's safer. Your mum should probably have one of these rather than access to her full account. You may find that if the carer pays for the shopping your mum can eventually be given an expired card for her purse. At the moment though, it sounds as if they will both need access to money.

Does your brother manage her money with online banking? I pay my mum's carers, and agency fees, from a separate current a/c for care costs. She gets direct payments from the LA which are paid into this a/c. It is much easier to track your care expenditure if you keep it separate from housekeeping and other bills. Not essential though, unless you are getting direct payments, where you have to keep the funds separated.