Issue with care company

sullivlo

Apologies if this is the wrong place. I'm just looking for some advice on how to deal with an ongoing issue that we have with the company that provide care to a family member. It's a bit of a complicated set-up/situation, so bear with me.

BTW I know that we have some things that are an issue for a care company, but we are trying our best to accommodate them as much as possible. Happy to provide any clarifications.

This might be long. Apologies.

My great aunt lives with us in a purpose built granny flat in the back garden. There's no access to it without going through the main house. 

My aunt has dementia, amongst other health issues. Her assessment said that she requires care / support with things and she was assigned 1.5 hours care per day (1h in the morning, 30m in the evening) to cover the basics of personal care, medication prompting, companionship, cleaning, checking the fridge etc... 

She attends the Care of the Elderly Clinic in the Mater and her doctor there agrees that she needs the carers. He has suggested perhaps considering a home for her, but we don't want that for her. She is a family member and we will do our best to keep her at home for as long as possible. She would get very stressed in a home. 

Due to the nature of the type of dementia she has, she makes poor decisions. Sometimes she will randomly cut out all of her shoelaces, or throw all of her socks in the bin, or pretty much any thing that you can imagine a child doing for zero reason. She is also very centred around her routine - if I tell her we're going out to the doctor/hospital/supermarket/etc at 1pm, she'll be ready at the door at 12.30pm and handing me the car keys at 12.59pm... She's also very trusting and we constantly have the "stranger danger" talk with her because we're concerned that someone might try take advantage of her vulnerability. We had a call from an occupational therapist to say that he knocked on the door when passing and she invited him in - he could have been anyone. So we have a hard rule that she doesn't open the front door and she doesn't let strangers in. 

What else is important... Living in the house are 4 adults - 3 of us have full time jobs and are gone from the house at 7.30 and not back until 5ish. The 4th person is my gran, who is 2 years younger than my aunt. She has no dementia or anything, but she has significant visual impairment and can't see her hand in front of her face. She can offer a basic level of support to my aunt, but is not in a position to provide the level of care required. 

Now. The (main) issues...
- Carers not showing up or showing up late for no reason (if a call is for 8am we're the first call of the day so there is no reason for a delay)
- Non-introduced carers arriving to the house and letting themselves in (we have a keybox). A few weeks ago I was woken up by a stranger in my bedroom as she couldn't find my aunt (this actually really upset me). We complained, but again yesterday it happened when my gran was making her breakfast - a stranger appeared in the kitchen.
- Lack of communication - we have requested information so many times and they just don't respond
- Last minute cancellations without notification - I took an afternoon off work last week to facilitate an introduction of a new carer but nobody arrived and nobody called to say it wasn't going ahead
- Getting my gran to sign documentation that she shouldn't sign (she's not the next of kin, firstly, and secondly she cannot read what she is being asked to sign) 

I'm happy to hear some home truths on this - are we being unreasonable that we request the following:
- No unintroduced carers being sent to the house: we say that she can't let strangers in and if we start telling her that some strangers are okay, where do we draw the line? Also, it's not fun to be woken up by a stranger on a Saturday morning.
- Some type of reliability time wise: if her routine is altered too much, she gets stressed and this manifests itself in a few ways - she either goes walking (and could be missing for a few hours and requires us to drive around looking for her - fine if we're here, less fine if we're not) or locks herself into her house, which means that we can't get in if there was an emergency. We understand that carers can be delayed as the day goes on because of traffic etc, but being late for an 8am call is not acceptable.
- Not to speak to the non-next of kin about care: only two of us are able to sign care review plans etc

What we try to do to help the care company:
- I organise my day to facilitate the introduction of carers if required
- We have a wide window of when we can accept a care call 
- We don't request them to attend anything outside of the house or do anything for her outside of the house - I handle all of her medical appointments, medication, shopping, pension etc
- We facilitate the company as much as possible in terms of flexability where possible (installing key box, being around for introductions, changing calls...)

Next question:What can we do? I know that care companies are up the walls with a high turnover of staff and impossible workloads, but they're getting paid to provide a service which they are not providing. We do a huge amount of the care ourselves, but we can't be there 24/7 and every medical practitioner and the district nurse team see that we try our best. 

BTW, we're not totally unreasonable. If someone calls us to say there's been a cancellation or that there's a delay, we can deal with that. It's the uncertainty that we can't deal with.

We, as a family, have only gone away together once without her and that was to the UK when a family member died. We have no confidence in their care. We were in Portugal and had 3 calls to cancel care and we had no way to contact my aunt to tell her, so it was a frantic dash for someone in Dublin to leave work to get home in time to tell her that there would be nobody coming (my aunt cannot use a phone).

Furthermore, if there's an issue, we're happy to cancel care and sort things out between ourselves, but we're not in a position to provide full time care. We didn't request any care calls over Christmas as we appreciate that carers have families and that there are other people who do need care, and we did it all ourselves for nearly 3 weeks (I was off work for almost 3 weeks). 

Or are we unreasonable??

Apologies for the length of the post. It's a bit of a stressful time with trying to keep on top of her and all of her quirks. 

Appreciate any input/advice, and happy to clarify anything!!

beauf

Switch to another company that someone else recommends. None are perfect but some are amateur night.

beauf

For me your Aunt's time at home is done. You simply don't have enough cover and you'll never get it at home unless you pay a fortune for a full time carers. The social aspect of being around lots of other people and organised activities cannot be underestimated.

I think if you had a large family at home (not working full time) that would be different. But you don't.

You have to ask yourself could she be safer and have a better quality of life somewhere else. You should get the opinion of a few geriatric medical professionals that you're attending.

sullivlo

She won’t go to a home.

We adjust our lives to ensure her safety - take it in turns to be home etc - but we can’t be there 24/7.

We were with a previous company who were even worse - these came recommended.

Strumms

That care company sound horrendous. We’ve had a carer for a relative who was recovering from a LTI.... of the four carers 2 were brilliant almost superhero like in fact, another was the same, actually a lovely girl but far too many sick calls but brilliant when she did show, the 4th had her heart in the right place but was an ‘in your face’ and a determined personality and confrontational and was falling out with colleagues, the state physio etc.. from what I’ve read the companies and carers can be a bit hit n miss,

looksee

A lot of that sounds very familiar from when my sister was looking after our mother (with equally difficult issues) in the UK. It sounds as though you are banging your head against a wall with the ones you have. The problem is that the next one might not be any better, but sometimes you have to try.

I would suggest being less reasonable with the company. Make all your points very clearly to someone in senior management and tell them that if the situation does not improve immediately you will move to a different company. Meanwhile start making enquiries.

None of what you have listed is unreasonable, its poor management and training, and that is the company's responsibility.

Keep a list of transgressions, each time something stupid happens ring the controller/supervisor and complain, and let them know you have recorded the incident. You are not being unreasonable, you are paying for a service and should be able to rely on it.

lulu1

I think this is terrible My husband is a carer and there is no way he would ever turn up late for his client. Also if for some reason he has to cover for someone the public health nurse will always go with him a day or so beforehand to interduce him to the client and family

I would keep complaining op after all you are paying them

Is there no way you ca get extra help from the hse or irish wheelchair

niallb

My mother lived with us for most of the last five years of her life.
She needed full time care for the last 8 months and we were lucky enough to get a place in a nearby home.
Even if you're not ready to have her move to a home, you'll need to start talking to them as there's no such thing as an immediately available room.
Wandering is really scary. My mum didn't do much of it as she had very stiff knees which may have been a blessing in disguise!

Talk to your local public health nurse about respite care. Let them know the pressure is mounting with your family.
Your great aunt is entitled to a few weeks of respite each year to allow the rest of you to take a breather.
Whether it's available or not in your area is another thing.
I still find it hard to believe what a change it made to all of us the first time mum got a week in a home.
They were very experienced in dementia care and we were amazed how much she enjoyed it.
It made us realise that full time care might not be such a bad thing when it came to it.
The big thing though was how the rest of us felt after a week with a lot more sleep in it!
If you need to think about big changes or just take firmer control over what is happening, it's much better to do so after a good night's sleep.

Once mum was on their books we were able to ask if a particular week was available to cover a family getaway which was amazing.
It needed to be with plenty of notice and I think she may have got preferential treatment because she was older than most.
All in all we had 4 sessions of respite over the few years. We had hoped to use that residential centre when the time came as she was used to it, but unfortunately there were no places and we had to look elsewhere too.

Do you have any alzheimers cafe or day centre available nearby?
See what might be possible there if somebody is available to drop her off or get her collected.
We used the one at Whistlemount in Navan for a few months and they are fabulous.
They are short on spaces, but even had a bus which collected and dropped off from home if necessary.
They did singing and seated exercise and games as well as feeding everybody and looking after their needs.
It's run by long term volunteers as well as having a nurse on the staff and the daily fee is small.
If she's moving towards full time care - and unless her health is otherwise poor she is - it will help for her to experience a group environment.
It will also be good for the rest of her family to see what a different kind of care can look like for her.

We had 6 hours and finally 10 hours a week care from the HSE.
This was mainly for dressing and washing.
As things became more difficult we used a care company for extra cover with mum, but our experience was very different to yours.
We were always notified if a new carer would be coming, and in almost every case they were introduced by someone who had been with my mother before.
We had no random cancellations of any significance over the year and a half we used them.
It was also no problem for us to cancel a day if we needed to take her to an appointment or whatever.
They seemed expensive when we first started to use them, but the extra few euro went to providing them with extra cover to make sure things went smoothly.
They also kept a log book which stayed in the house and was filled in after each visit so we knew if there had been anything unusual or just how the day went.

We're not in the same part of the country as you, but not all companies are like what you'e experienced.
I can recommend them if you PM me - the one we used has places all over the country.
If a mod approves I'd be happy to post their name here, but it's not fair without asking.

Finally, asking your gran to sign things isn't on.
I suggest you print out a sheet saying she is not entitled to sign on your aunt's behalf and that making an older person who cannot read sign anything is abusive. Ask them to call you immediately if they have an issue with it. Laminate, stick to the fridge and tell your gran to use it.
Then ring the company and explain that all carers sent to the house must be made aware of this.
In fairness it's probably nothing that requires a next of kin, and simply an acknowledgement that the carer was actually there, but it could be a cheque for all your gran knows! The care company we used has the carer ring the office on arrival from the landline and ring again just before they leave.
This requires no signature but serves as a check in/check out that kept really good track of time.

Things will not get better. Unfortunately that's the way with dementia.
There's still plenty of living to be done though, and if you're not happy about the way some things are going you've every right to try to change it.

Drop me a PM if you've any other questions you're less comfortable putting up here, but I'm happy to answer pretty much anything based on our own experiences on the forum too.

Best of luck folks.
It's not an easy time.

beauf

Also be careful not to run yourselves into the ground, because if one of you gets sick the wheels come off the wagon very quickly.

Red Hare

Your complaints are very common. You do have choices. If you like, under the new HSE contract (Sept 2018) you can employ care assistants directly through direct carer companies such as https://homecaredirect.ie.

also you can complain to the company or to the HSE - either route should bring improvement but I reckon if you let the company know that you will complain to HSE they will listen with more respect.

From your posts I understand that you are in the area of the Mater Hospital - I live in this area too . Please post here or pm me if you need any further advice. It is worth persevering with home care but if you don't take on the battle they can do their haphazard thing on you.

Pretzill

Have any of the adults in the home considered becoming her full time carer - (or two of them applying to share the caring) You seem to be adjusting your schedules to care for her anyway?

I have no advice on getting in paid carers. Just thought I'd mention that.

sullivlo

Pretzill wrote: »

Have any of the adults in the home considered becoming her full time carer - (or two of them applying to share the caring) You seem to be adjusting your schedules to care for her anyway?

I have no advice on getting in paid carers. Just thought I'd mention that.

I'm a teacher so can't be flexible with work hours. Plus I don't think I am ready to give up my life to be a carer. That might make me seem heartless or selfish, but I don't want to. I would go crazy.

She doesn't need 24/7 care or anything, it's companionship and personal care etc. We, obviously, don't see her stuck and deal with the day to day things as much as possible. The reason for carers is to help her continue to live as independently as possible.

We probably sound like awful people.

looksee

In the caring situation only you know what is involved and what you can do. No-one can judge whether you are awful people (you certainly sound like the opposite) because no one really understands the issues like you do. The situation you are in is difficult, knowing that care is needed and yet the circumstances are not so advanced that you need to be there 24/7 - and in fact that would be unhelpful. So life is constantly a balance and negotiation as you try and figure out the best approach to each situation.

The issue is not with your input, it is with getting the carers sorted and the short term aggravation of getting them organised (the management, not so much the individuals who call) will pay off in the long term. Don't waste your time trying to see their problems, demand the service you are paying for and let them sort the logistics. Good luck, its not easy.

Pretzill

sullivlo wrote: »

I'm a teacher so can't be flexible with work hours. Plus I don't think I am ready to give up my life to be a carer. That might make me seem heartless or selfish, but I don't want to. I would go crazy.

She doesn't need 24/7 care or anything, it's companionship and personal care etc. We, obviously, don't see her stuck and deal with the day to day things as much as possible. The reason for carers is to help her continue to live as independently as possible.

We probably sound like awful people.

Gosh Sully you aren't awful people - sounds like you are trying your best in the situation - I just thought I'd mention Carer's in case anyone was in the position to do it. But if you haven't already - I'd check out familycarers.ie - they used to be The Carer's Association of Ireland and they have homecare services and may be able to advice on the quality you should expect. Also you are already carer's for your aunt, even if it isn't 24/7 you are meeting her needs and ensuring she stays in her home.

lulu1

No way are you awful people Quite the oppisite .Is there any way you could have your aunt attend a nursing unit for a few hours a day. Some have activities re singing/crafts would set your minds at rest during the day

Uriel.

It sounds like you are paying privately for the care and not going through the HSE?
Have you used the company's complaints process? I don't think your requests are over the top, in fact, they're fairly basic and reasonable. I would expect more from a care company.
The fact that your great aunt can live at home on 1.5hours of care a day (although I'm sure you guys are topping that up as family carers), suggests her care needs fall considerably short of requiring nursing home care.

I think all you can do is follow the complains process and/or switch care company.

Not for the personal care aspect of your great aunts care needs but for the companionship and other such services I'd highly recommend touching base with Alone who have some excellent community services, including befriending services.

sullivlo

looksee wrote: »

In the caring situation only you know what is involved and what you can do. No-one can judge whether you are awful people (you certainly sound like the opposite) because no one really understands the issues like you do. The situation you are in is difficult, knowing that care is needed and yet the circumstances are not so advanced that you need to be there 24/7 - and in fact that would be unhelpful. So life is constantly a balance and negotiation as you try and figure out the best approach to each situation.

The issue is not with your input, it is with getting the carers sorted and the short term aggravation of getting them organised (the management, not so much the individuals who call) will pay off in the long term. Don't waste your time trying to see their problems, demand the service you are paying for and let them sort the logistics. Good luck, its not easy.

Thanks. I just don't want people to think that we're lazy or whatever. Like she lives with us and there are adults here and we are capable of providing a significant proportion of her care, but as her needs increase (& her abilities decrease), it's hard to not become fully consumed by providing for her - medicine check in the morning, mid morning snack, fridge check in the afternoon to make sure she has not put something that should be in the freezer into the fridge, early evening check, bedtime check... At the moment between us we do all bar the med check and early evening check (they're by the carers) but everything else we do. It makes things like going away as a family, or going out for a meal, or doing anything impromptu, very difficult. I can't just say "**** it, I *will* come to the pub after work" because someone has to go home to check in on her. (Poor example, but you get what I mean hopefully!)

Pretzill wrote: »

Gosh Sully you aren't awful people - sounds like you are trying your best in the situation - I just thought I'd mention Carer's in case anyone was in the position to do it. But if you haven't already - I'd check out familycarers.ie - they used to be The Carer's Association of Ireland and they have homecare services and may be able to advice on the quality you should expect. Also you are already carer's for your aunt, even if it isn't 24/7 you are meeting her needs and ensuring she stays in her home.

Thanks - I'll check them out. I've researched who I can contact in the HSE, I'm just absolutely up the walls in work and life currently and I can't find time when they're open to call them. I'll be off for midterm in a few weeks so I'll have time then.

lulu1 wrote: »

No way are you awful people Quite the oppisite .Is there any way you could have your aunt attend a nursing unit for a few hours a day. Some have activities re singing/crafts would set your minds at rest during the day

She refuses to go to anything outside of the house because she is convinced we are going to abandon her and make her homeless. A few years ago she was very sick with a kidney infection and she turned septic, and she tried to leave hospital any time anyone was there (twice a day) because she was convinced we were leaving her. It's like having a child. Unless someone went with her for the activity, she wouldn't go, and having someone go with her kinda defeats the purpose. The consultant, PHN and carer team have all tried everything to get her to agree to go.

Uriel. wrote: »

It sounds like you are paying privately for the care and not going through the HSE?
Have you used the company's complaints process? I don't think your requests are over the top, in fact, they're fairly basic and reasonable. I would expect more from a care company.
The fact that your great aunt can live at home on 1.5hours of care a day (although I'm sure you guys are topping that up as family carers), suggests her care needs fall considerably short of requiring nursing home care.

I think all you can do is follow the complains process and/or switch care company.

Not for the personal care aspect of your great aunts care needs but for the companionship and other such services I'd highly recommend touching base with Alone who have some excellent community services, including befriending services.

No, we're not paying privately. It's through the HSE and they pay the company directly. We have complained several times and had care update meetings with managers in the house etc, but nothing changes. The reason we were hesitant to push anything was that we don't want to change everything suddenly for my aunt and we were concerned that if we push the complaints too hard that they will just tell us to feck off and outsource our care. That has, however, changed since one of the two remaining carers that we have has just handed in her notice and will finish up in 2 weeks. So there is going to be a lot of change ahead.

We have had, I think, 6 new carers introduced in the past 5 months. All bar one have left the company. One of her long term carers is on sick leave as she has cancer, one has handed in her notice, and the remaining carer is a college student who is going on work placement in a few weeks and won't be able to commit to shifts.

I've had a crazy few days in RL/work so haven't had time to chase up anything. I'll hopefully be able to make time tomorrow.

endofrainbow

sometimes a chat with her GP and/or Community Health Nurse can iron out some issues.

PM if you want to discuss

Nickie3

Hi Sullivlo,

No you don’t seem like awful people, you seem caring and thoughtful and compassionate and reasonable.

I think we all suffer from ‘niceness’ syndrome. We don’t want to cause a fuss, we want to be nice, but if you call and complain every time the career is late, they will very quickly learn to roster only people who are always on time with your aunt. Call. Every. Time.

I am going through similar issues with a care company, Except my issue is careers not staying for the duration of time they are rostered for. An hour on the roster is an hour, not 40 minutes and I will call every time I find out the carer left early.

Time of call is less an issue for me than duration but my dad is physically dependent and he doesn’t have Alzheimer’s so the time they arrive doesn’t bother him.

Get yourself a reputation as a bit of a pita and, believe me, they will do everything to keep you happy and pass on the lazier carers to another client who doesn’t complain.

Plus: when you call to complain, ask to talk to the manager and don’t waste your breath on the person who picks up the phone. Reviews are mandatory, make sure your concerns are noted in the reviews.

Make sure the care plan is explicit with regard to where the carer goes when they let themselves into the house. I would be absolutely livid if I found someone in my bedroom!

Having said all that, God knows it’s a tough job and good carers are completely undervalued. I always make sure I tell the company when I’m happy with someone and I ask if I can that person regularly. I have also called to say I didn’t want someone to ever darken the door again .. ( the person who told My dad he would be better off in a nursing home comes to mind)

Best of luck, your aunt is lucky to have such a loving supportive family around her

sullivlo

An update of sorts...

Last week I had my aunt at her consultant for the care of the elderly (apparently it’s not PC to say geriatrician anymore). They asked all of the usual questions and they recommended that she gets some extra care - 30 mins more a day. She was against the idea so they pressed her on it to see why and she told them about the care issues. They asked me if it was true etc and I verified it all and they were appalled at the issues (there were more since I originally posted - several days where no carer arrived which caused a huge stress on my aunt / sent her wandering etc). Their social worker sent a complaint to the H.S.E. and we were contacted to discuss.

We had a meeting earlier - H.S.E., ourselves and the care company, and the H.S.E. were very on the ball in terms of seeking answers etc. Previously there were action plans in place that the company swore would be sorted, but now they have to report to the H.S.E. with an update and outcome.

Hopefully this sorts it.

endofrainbow

sullivlo wrote: »

An update of sorts...

Last week I had my aunt at her consultant for the care of the elderly (apparently it’s not PC to say geriatrician anymore). They asked all of the usual questions and they recommended that she gets some extra care - 30 mins more a day. She was against the idea so they pressed her on it to see why and she told them about the care issues. They asked me if it was true etc and I verified it all and they were appalled at the issues (there were more since I originally posted - several days where no carer arrived which caused a huge stress on my aunt / sent her wandering etc). Their social worker sent a complaint to the H.S.E. and we were contacted to discuss.

We had a meeting earlier - H.S.E., ourselves and the care company, and the H.S.E. were very on the ball in terms of seeking answers etc. Previously there were action plans in place that the company swore would be sorted, but now they have to report to the H.S.E. with an update and outcome.

Hopefully this sorts it.

Hopefully it does.

Red Hare

If a care worker fails turn up to a scheduled call without letting the company know she/he is going to be absent then that is neglect - it is elder abuse.

If the company knew nobody would be turning up and did not notify next of kin then they are guilty of elder abuse too.