24-hour care at home - but what happens next?

[Dawnbreaker]

Hi everyone; this is my first post but I have been following TP for about two years, and getting lots of really helpful advice and support from you wonderful people. Thank you.

My MIL has Alzheimer's and lives in her own home, about 2 hours' drive from us. She also has very poor mobility, so is not and has never been at risk of 'wandering'. For the past 2 years she has had carer visits with increasing frequency, and can't do anything for herself apart from (sometimes) walk to the toilet. These days she often needs help with this too.

For most of last year her grandson was living with her as her main carer. When her personal care needs and her behaviour became too much for him (and for my OH and myself, who took over from him on weekends) he moved out, and we were advised to draw back a bit and "wait for a crisis". I think this must be familiar to many readers.

Well, the crisis happened just before Easter, when MIL was admitted to hospital with a suspected heart attack (later confirmed), discharged after a few days but panicked and called her 'LifeLine' within 24 hours and was readmitted to A&E. She was moved to a rehab unit and, after discussing with staff there and the mental health team in her area (who are fantastic), we arranged for her to come back home with a live-in carer. I should say that MIL is self-funding - otherwise I suspect that this choice would not have been available to us, and she would have had to move into residential care.

The live-in carer does a very good job, and generally they get on, although MIL's mental state has deteriorated significantly over the past weeks and she is now quite confused about who is who. She also gets violent at times - hard to believe when she is so very frail, but there it is.

Sorry for the long preamble! I would love to hear from others who have been in the 24-hour care situation, to know how you managed things so that this could continue until the end of life - or if this was not possible, what was the trigger for moving your loved one to a care home? MIL is terrified of going into a CH (actually she is terrified of a lot of things, but this is probably her worst fear apart from dying). We feel sure that she will never go voluntarily, which presumably means she would have to be sectioned if and when the time comes.

 

[Chemmy]

Hello Dawnbreaker

A proper welcome to TP after all this time!

My MIL moved into a CH just a month or so ago. She sounds in a similar state to yours - it was the physical problems as much as anything that meant she needed 24 hour care.

She is self-funding too. A live-in carer was never a consideration in our case as I don't see how anyone could be expected to do a job like that 24/7. In the CH there is a team, they have breaks, they go home at the end of their shift, they have holidays and days off. You only have to read the reactions of spouses on TP who are cooped up with their loved one all day every day to know how stressful that can be.

Unless you have managed to find an absolute saint, then I would be concerned at how long this type of arrangement could last without the carer blowing a fuse. And then how would you know?

A lot can go on behind closed doors. I don't see how you can be sure everything is OK. Do you know why your mother is violent at times?

Sorry, I suspect this is not what you want to hear, and everything might be absolutely fine...but again, can you be sure?

 

[snowygirl]

24 hr care-a question?

Hello and welcome to TP(a fairly new too)
Ive just posted on another thread about my parents and too wonder how a live in carer works? It sounds like up to now its been a good thing for your MIL but how do you keep an eye on things? It was suggested some time ago that this could be a solution for my parents and even though we haven't even gone this far I wonder how it works and yes how long this situation works?
I hope it can continue for you as long as you need it to.

 

[Lady Phoenix]

The live-in carer does a very good job, and generally they get on, although MIL's mental state has deteriorated significantly over the past weeks and she is now quite confused about who is who. She also gets violent at times - hard to believe when she is so very frail, but there it is.

If I may I speak as a live in carer.

Now, I dont know your MIL and I dont know the Live In Care situation so I can only speak generally.

The first month or so are always going to the hardest. Your MIL is getting used to the carer and of course the Carer is settling in. The carer will be constantly worried they are doing the right thing, wondering what will happen if they do this that or the other, and of course you MIL will be all confused. Confusion often leads to aggression, or as I prefer to put it, fustration.

Ive been with my lady for 3 months now and she has only really started to get used to me, in fact she has only remembered my name in the last couple of weeks. There is often something new that Im discovering about her too. But on the whole we are quite settled with each other.

Is the Live In Carer there for 3 months at a time, or 1/2 week on/off basis.

I do the 3 months on/1 week off thing which in my own experience is preferable. When I go my lady has to get used to someone new, but at least in my case Ill be looking after her for 48 weeks a year and between 1 and 4 carers sharing the other 4.

SO, what happens next you ask? Basically if there is drastic change then IMO they are doing it wrong. My brief is to get my lady to do as much as she could before her diagosis. Im writing this to you from sunny Norfolk where we are on the first of a regular 5 day monthly holiday. Why? Because thats what she used to do before.

My lady buys the shopping because she is capable of doing so. She washes up because she wants to and is capable of doing so. However, somethings she cant do. I cook because she cant/wont. I put her meds out for her but I dont force her to take them, since she is fully caoable of.

The only time I step in and do something she doesnt want is when the "duty of care" care applies. For example, if my lady fell down the stairs and broke her leg and refused an ambulance, then tough, Im calling them.

Anyway, I start to go off topic.

If the live in career is anything like me they will welcome suggestions from family members, although some carers dont like being ordered about ( ) and if they are fairly new they will probably be as scared as you MIL is. But essentially they are just there to help your MIL lead a normal and fulfilling life as possible.

You (Or someone else) mentioned end of life care. This is something different, but dont worry, when the time comes the carer should be properly equipped for this and hopefully a good job will be performed.

 

[Dawnbreaker]

Many thanks for your responses.

Chemmy and Snowygirl - we do have concerns about how well live-in care will work in MIL's case, but we didn't feel that we had a lot of choice. When she was in hospital and it was recognised by all concerned that she can no longer manage on her own, even for a few hours between carer visits (mainly because she panics but also because of her low mobility), we thought this was probably the moment to move her to a CH. But we were advised that, as she can afford to pay and very clearly does not want to go into residential care, we should try live-in care before resorting to the CH option.

Lady Phoenix - it is really interesting to hear from someone who provides live-in care. MIL has passed the stage where she can undertake most activities except watching TV and conversation. The carer is very much occupied with MIL's personal care, meals, toilet needs, housework, medication etc. We visit every 1-2 weeks, and we try to provide some stimulating activity for MIL e.g. taking her out in her wheelchair or encouraging her to talk about her memories. We suspect that the carer probably doesn't have the time or energy to do this on top of everything else (!) though she evidently does have some conversation with her.

In truth, we feel that she would probably get more stimulation in a CH and she would certainly get more visits (from us) if she lived down the road instead of 70 miles away. Also I think her care would be more dementia-appropriate; her live-in carer does seem to struggle when she has one of her panicky / aggressive moods. But we don't feel that it is our decision to make, unless something happens to drive that decision.

I'd be interested to hear what others think about this.

 

[legolover]

As previously asked, does your live in carer have any breaks/days off?. As Lady Phoenix says, there are various systems that could be used but everyone is entitled to proper breaks and holidays.

 

[jaymor]

Live in care is fine and preferable to a care home if your MIL prefers this and she requires no more than a maximum of 18 hours a day. A live in carer needs sleep as well as regular breaks. If your MIL sleeps well and your MIL is happy then stimulation may be the price you have to pay to allow your her to stay at home.

No one person can give complete 24 hour care 7 days a week. This can only be done by several carers covering a day. Company too is important. My husband is long passed holding a conversation but he interacts with the other men on his floor and with the carers. At home there was just me and as he did not sleep I was absolute wreck most of the time.

There is no right or wrong way, we just find what is best for our own situation.

Good luck and hope that you find some way of making you all feel happy and satisfied with MIL's care.


Jay

 

[Dawnbreaker]

Thanks Jaymor - I guess we are getting used to the idea that we have to sacrifice some things that we would consider desirable, in order to give MIL what she wants.

Regarding time off for the carer - at first sleeping was a problem, but now MIL is having medication to help her sleep and this seems to have improved the situation for her and the carer. The carer seems to be OK with the number and length of breaks she gets.

 

[Padraig]

With the vast number of people suffering with Dementia I'm sure that there are many carers looking after LO in their own homes on their own. Such people will not have the time to spend posting on an Alzheimer's websites, hence you are unlikely to receive their feedback about caring until the very end, when the patient tends to sleep for long periods.
To state: 'that it is impossible for anyone to care for a loved one 24/7 in their own, home on their own', I, and my whole family, neighbours and local doctor know that not to be the case. Except for the final three days of my wife's life we were together for her last four years.
During those final three days in hospital I kept asking to take her home if she stayed concious for a long enough period and the doctor agreed. Sadly, it never happened. Over the years she had to be rushed to A & E and after treatment I insisted and taking her home. On one occasion, it was said there was no hope and doctors decided to transfer her to the Geriatric Ward. I was not prepared to allow that to happen and took her home.
Back in 2007 people were saying that it is impossible to care for a LO at home 24/7 and still it is repeated. Please, can I beg you not discourage some folk from attempting what you consider impossible. Little progress is achieved by failing to attempt the impossible.
If I might add I'm no darn saint, just someone who had no option but to make my own way in life alone until I met my wife. Hence I lived life my way.
Maybe there could be a section for 'caring at home'.

 

[dottyd]

My friends are about 6 months into having a live in carer for their mum/ mil

It seems to be going well. She has a main carer who stays for two weeks but on her week off will be sent whoever.

That poses problems for the family.

Within that working week the carer gets a two hour break in the afternoon. The old lady lives in her own accommodation and family are close by.

I lastsaw her on nov. she has really deteriorated in that time. She is incredibly frail but still mobile.

The cost is £750 pw plus food. So, say about £800. Very nice if you have that option. My mum didn't.

 

[Padraig]

Those costs are outrageous. It's a sick society when those who commit the most heinous of crimes are 'put away' to receive free food, housing with many free amenities. All their 'care' is paid for by the very same carers and Dementia patients' taxes from their lifetime work. One day they will be released and no doubt, there will be support for them. There is but one release for the Dementia sufferer.

I'd like to see a comparison of the cost to the taxpayer of running the prison service and after care costs provided by Government funds, to that spent on Dementia care.

What crime have Dementia patients committed to have to pay in addition to the suffering they go through? Many have contributed to society in so many ways, by paying taxes, raising the next generation just to mention a few.

 

[Rageddy Anne]

Those costs are outrageous. It's a sick society when those who commit the most heinous of crimes are 'put away' to receive free food, housing with many free amenities. All their 'care' is paid for by the very same carers and Dementia patients' taxes from their lifetime work. One day they will be released and no doubt, there will be support for them. There is but one release for the Dementia sufferer.

I'd like to see a comparison of the cost to the taxpayer of running the prison service and after care costs provided by Government funds, to that spent on Dementia care.

What crime have Dementia patients committed to have to pay in addition to the suffering they go through? Many have contributed to society in so many ways, by paying taxes, raising the next generation just to mention a few.

Me too Padraig. My husband and I joke about what crime we would like to commit that would result in either of us getting good board and lodging at HM's expense in prison, which would be better than a care home!

 

[Lady Phoenix]

As previously asked, does your live in carer have any breaks/days off?. As Lady Phoenix says, there are various systems that could be used but everyone is entitled to proper breaks and holidays.

Every agency is different in the exact details although they are all roughly the same

Firstly I get 4 weeks paid holiday a year. I can take longer if I want but of course that would be unpaid. We have a lot of carers who work for 9 months then take 3 months off to go back to partners/family. Some are foreign so they fly home for holidays.

I am expected to "work" for 8-10 hours a day. Work means actually physically doing something such as personal care, feeding, laundry, cooking etc etc

I then get a 3 hour lunch break where I am allowed to leave the house and do whatever I want. In a normal situation someone would cover me (relation, professional carer, neighbour etc etc) but in my case my lady is able to be left alone for that time. During my 3 hour break I make sure she knows where the drinks and the snacks are and off I go, although I often spend my break in my room watching TV or on the PS3 or perhaps writing forum posts in TP. On occassion Ive gone out to the shops and taken my lady with me. I get told off for that but to be honest I see it as a pleasure, you know, shopping with company. However, that being said, my lady is early stages and Im sure the situation will change in the future. As I write this we are on holiday so I dont take a lunch break. This is because she is being taken out by her friend and I dont want to be a burden on her friedn so I stay in. What Im basically saying is that as a carer you need to be flexible. Do I complain that Im not getting my opportunity to do what I normally do on my breaks or do I lap up the fact that Im on a free holiday. You get the picture

The rest of the time is stand by. By that I mean that Im not actually working but I have to be available. In reality I dont do much but Im not allowed to leave the house. About once every 2-4 weeks my lady may be up at 2am but thats quite normal for her condition. If it started to become regular then obviously the care package will be reviewed.

Thats about it really. Its a great little job really and I get a lot of nebenefits, the best one being that I know that I can dedicate so much time to the care of one person, something I just could not do in a care home. There are of course down sides. When you consider Im working or on call for 21 hours a day the pay is low and I dont get to physically see my freinds for 48 weeks a year, but thats what skype was designed for.

There are varying opinion on live in care, and I noticed this comment (Sorry didnt quote it)

"It seems to be going well. She has a main carer who stays for two weeks but on her week off will be sent whoever.

That poses problems for the family."

Which I find interesting. Some agencies provide 2 weeks on and 2 weeks off, or 1 on 1 off. My agency prefers to do longer term so I am here all the time except for 4 weeks holiday a year. Now, some people dont like that as they claim its too much work without a break for the carer. My agency gets round that by making care calls to the carer. At least once a week I get a call from my boss asking how I am and if there are any problems they can pull me out short or long term or permanantly. I like the system as I worry my lady will take too long to used to carers if it was done on a 2 week on/off basis. Ive been here 3 months and its only the last couple of weeks that my lady has remembered my name. She has remembered me for about 2 months but could never remember me enough to get really close.

I normally try to be up before my lady but to be fair in order to do that I would need a crystal ball not an alarm clock. Sometimes she is up before me and if she is she comes and sits on the end of my bed and asks me if its too early to get up yet. (Ok, so it wasnt as funny when she did it last week at 3am). Now thats a relationship we have worked on together. I dont feel confident that we would have ever got to that stage if I was on a 2 week on/off. Of course, that would freak some carers out.

Anyway, my apologies, as normal I waffle on

 

[Lady Phoenix]

Those costs are outrageous. It's a sick society when those who commit the most heinous of crimes are 'put away' to receive free food, housing with many free amenities. All their 'care' is paid for by the very same carers and Dementia patients' taxes from their lifetime work. One day they will be released and no doubt, there will be support for them. There is but one release for the Dementia sufferer.

I'd like to see a comparison of the cost to the taxpayer of running the prison service and after care costs provided by Government funds, to that spent on Dementia care.

What crime have Dementia patients committed to have to pay in addition to the suffering they go through? Many have contributed to society in so many ways, by paying taxes, raising the next generation just to mention a few.

These "outragous"costs. I assume its a reply to the previous poster so therefore assume you say that £750 a week for a live in carer is outragous?

So, would you prefer to pay in excess of £1,000 a week to put someone in a NH where they wont (sorry, cant not) get 24 hour attention, food that they choose themselves and personal space the size of their own property?

As for the prison situation. Im not going to comment on that as to be fair I think thats something else entirely. I have my own views which is not really a debate for TP (its not contraversial, just not relevant).

 

[Chemmy]

That gives us ballpark figures of:

£750 /(21x7)= £5.10 per hour.

Hardly outrageous for what, at times, could be a very difficult job.

Lady Phoenix, I salute you.

 

[Padraig]

It appears that I've upset some folk. Sorry it was not my intention. We each have a different perspective on individual care. I learned very early on how my wife feared being 'put away'. That lesson was reinforced during her short stay in a Nursing Home.

In the early stages of her Alzheimer's I accompanied her on a visit to the local Alzheimer's Centre. They were having a party. Just as we were about to enter she pulled away with a look of fear on her face: "I'm not going in there". After a lot of coaxing and help from the lady in charge, she agreed to join us in a cup of tea, in the garden to the rear of the building.
On our way home I asked: "Why would you not go into the building?" She replied; "Your trying to put me away". Shocked and saddened: "I could never do that". To this day I live with that broken promise.
I think I can speak with some experience of being 'put away'. The fear is real and I for one would rather die than be 'put away'. This man is in his eighties, but who listens to the old folk? Society knows what's best for us. If only you could enter their world.
The fact is I live in a separate world to most and live life my way and I might add with some success in many fields. There are times that I thank God for not having had a family, home or education as a child.
I was fortunate in that I knew my wife and background from her teenage years. As she drifted back in time it was possible to relive those years and share her time journey.
Love, compassion and empathy can not be bought no matter the cost, it is a state of being, given freely. Just observe how dogs connect with the less fortunate. No words required to transmit true love. Some people say their LO 'has lost all feeling', yet they prescribe medication for pain. How do they know there is Pain?

 

[Lady Phoenix]

That gives us ballpark figures of:

£750 /(21x7)= £5.10 per hour.

Hardly outrageous for what, at times, could be a very difficult job.

Lady Phoenix, I salute you.

£5.10 per hour? I wish I was that rich. I dont get half that Thats what the agency gets, not what I get (In fact my agency publically advertises ratehs from £850, which Ill add I feel is good value for money)

@Padraig if you think you have offended me you are wrong my friend. I have very quickly learnt that different people have different opinions. Ive seen people come into nursing homes and have drastically imporved. Ive seen good and bad thing in nursing homes, Ive sen good and bad things at individuals homes. I think we are very lucky to have such a range of care options so that the care packages can be tailored better towards the individual needs. While Im a big fan of live in care I also appreciate that its not always the best option.

However, dont forget that within your mothers and fathers lifetimes there used to be two options. Your family look after you or you dont get looked after at all.

 

[Padraig]

Lady P, I learn a lot about families on here. I've never addressed anyone as Mum or Dad, nor know a home. That made me chase the dream I found.

As for looking after me, I woke up in what I believed was an orphanage with another 160 male children. Some in cribs and the rest ranged in age up to 10. At that age we were transferred to an Industrial School were we were put to work providing free labour for the State till age sixteen.
Life on the outside I knew nothing of and mean nothing to me. Never spoke to a girl! They were a new species to encounter. The safest place for me was to leave Ireland and join the UK forces. They were taking anyone in the late forties and I was accepted as a Messing Orderly. The camp became my first home.
It may surprise you to learn that towards the end of my service I ended up teaching logistics to well educated young men. With the success I had, I came to realise it was time to move on, so I resigned. I took up a post with BAC as Speciality Training Supervisor in the Middle East. My background remained secret up until recently. After my first job I had many offers of employment and accepted one with Lockheed A/C International.
The Americans though I had some special talent and promoted me a post as a Site Superintendent. As a result of the efficiency changes I introduced in catering, transportation, sewerage treatment plant, etc etc I was paid bonuses in addition to a very good salery that allowed me to retire by age 54.

Whilst caring for my wife I discovered the true story about the family I was denied all contact with, and of how I ended up in Industrial Schools. In spite of a stolen childhood and all the abuse I suffered I've achieved much, in sport, work and family life. The greatest achievement and most rewarding was to be the best husband I could in my wife's time of need. Yes, I'll admit I was selfish in refusing to share the caring with others and like every other phase in my life did it my way.
All I wish to do now is to share my experiences of how I managed to approach the different changes that came with AD. I always expected the unexpected and lived in what I call the NOW.