First time caring for someone with alzheimers

[lonecraddock]

Ive starte working as a carer, and have been placed with a dementia sufferer for the first time. The company IM working for is new, and it is only me working each day, alone with the patient. I get a break every day for an hour or so when she is taken to see a family member. I know I could do this job if I had more breaks, but dealing with it alone for such extended periods of time is hard to manage. Obviously this is my first time and its going to be hard, but Im not sure how to deal with a lot of stuff, like the constant repetition and following me around. I want to do a good job at this and I know I can, would any carers with more experience have some advice they could pass on?

Thank you for your time

 

[Karjo]

Ive starte working as a carer, and have been placed with a dementia sufferer for the first time. The company IM working for is new, and it is only me working each day, alone with the patient. I get a break every day for an hour or so when she is taken to see a family member. I know I could do this job if I had more breaks, but dealing with it alone for such extended periods of time is hard to manage. Obviously this is my first time and its going to be hard, but Im not sure how to deal with a lot of stuff, like the constant repetition and following me around. I want to do a good job at this and I know I can, would any carers with more experience have some advice they could pass on?

Thank you for your time

I imagine this is very hard for you and sounds fairly unusual, most seem to have carers just popping in and out.
I would hope you have received some sort of training as I can imagine this is quite a responsibility otherwise? Can you take your patient out for a walk? Sorry have to go as attention required elsewhere !! so cant suggest more at the moment.

 

[CollegeGirl]

Hello Lonecraddock and welcome to TP. I'm sure you will get lots of advice here from far more experienced carers than me (I support my dad who looks after my mam who has Alzheimer's).

In the meantime, I was wondering - how long do you have to spend with your patient? You say each day - do you mean an 8-hour shift, a 12-hour shift, or even a 24-hour shift, etc?

Do you work every single day, or is there someone else who takes over on your days off? Is this in your patient's home, or in some other facility or unit?

How mobile is your patient? Is she able to get out of the house, with your help? Getting out and about during the day, if at all possible, would, I feel, help enormously. Things often don't seem so bad when you're outside, or visiting shops/garden centres/coffee shops etc, bumping into other people who you and your lady can chat to, etc. It can help to pass the time and give a focus to the day and make things less intense, unless of course, going out creates other more stressful situations than staying in.

What other duties are you expected to perform? Is it simply that you are there to provide company for your lady, or do you perform personal care for her, cook and help her to eat, etc? Do you have to do housework and laundry as well, for example?

Sorry to overwhelm you with questions! If you could give us a little bit more background I'm sure there will be people coming along shortly with lots of advice and ideas for you.

Take care and do keep posting.

 

[lonecraddock]

Hi there CollegeGirl

The shift is 24hour care, I've done 72 hours in a row so far but next week I'll be doing it for 8 days solid with only an hour break each day.

It's difficult because the care is all inclusive with all housekeeping duties, answering the phone, keeping her company, cooking, receiving guests. She also gets up in the night 3 or 4 times and wonders into the guest room where I'm staying and demands to know who I am so I get very little sleep.

I was under the impression that for this sort of intense care some sort of rota would be provided so I could swap around with other carers perhaps every couple of days. I feel as if my company is demanding a lot from me since I have not had any dementia specific training and only 3 months general care experience!

I would like to take her out but the walk into town is a couple of miles which I don't think would be manageable for her.

Any thoughts on the normality of this set up?

 

[Kathphlox]

This is NOT normal by any means, you can't work like that or you'll be dead. Unless your being paid £500/wk+, then I would think you are being exploited

 

[CollegeGirl]

I agree with Kathphlox, I don't think this is acceptable or fair at all, not for your nor your lady. It's far too intense, you will be exhausted and the quality of the care that you can provide will be affected, not to mention your own health.

I take it then that this is in the lady's own home? Is she (or a relative) paying a private company which employs you?

I think you need to speak to someone at your company and try to get this sorted out, plus ask for some specialist dementia training to be organised for you. This can only be of benefit to both you and your lady or any future patients you may take care of.

Good luck and let us know how you get on.

 

[PeggySmith]

Hi Lonecraddock,

Sorry, I can't manage links yet, but I do know that your working conditions are almost certainly illegal. Google ACAS and phone them up - they're very helpful.

You might want to look at the "working time directive" first but it's pretty heavy reading.

Good luck with it all.

 

[SWMBO1950]

All the alarm bells are ringing in my head not just for you but also the lady you are caring for Unless you are a robot you cannot possibly carry on in this way.

Everything everyone has said here makes a great deal of sense and I agree you are being exploited. I am not sure but I would say the companies working practices could even be illegal.

Please get some professional advice at the very least from the CAB in your home town and please let us know how you get on.

Best Wishes

 

[Margaret W]

Dear lone craddock, this can't go on. Even family members have breakdowns giving that level of care voluntarily. Go back to your employers and tell them it isn't possible. The person you are looking after will be at risk if you don'[t get sufficient breaks in the day, and at least 8 hours to sleep undisturbed at night.

This is not a job, love, this is imprisonment.

Don't do it.

Love

Margaret

 

[Kathphlox]

The shift is 24hour care, I've done 72 hours in a row so far but next week I'll be doing it for 8 days solid with only an hour break each day.

It's difficult because the care is all inclusive with all housekeeping duties, answering the phone, keeping her company, cooking, receiving guests. She also gets up in the night 3 or 4 times and wonders into the guest room where I'm staying and demands to know who I am so I get very little sleep.

I was under the impression that for this sort of intense care some sort of rota would be provided so I could swap around with other carers perhaps every couple of days. I feel as if my company is demanding a lot from me since I have not had any dementia specific training and only 3 months general care experience!

I would like to take her out but the walk into town is a couple of miles which I don't think would be manageable for her.

Any thoughts on the normality of this set up?

Don't get us wrong on here, most of us, I would go as far as to say every one of us has or is caring for a dementia sufferer in some way or other... we know what it's like, it's not a job, it's a sacrifice... 24/7... we do it because we love them for how many years that it takes.. you cannot do this at the detriment of your own health, we on here know this and have learned that it's not possible, you/we need proper breaks.. not an hour here and there, but proper breaks.. take it further and investigate the legality of it.

 

[lin1]

Hello Lonecraddock
Welcome to TP
I really don't like the sound of your working arrangements
its also possibly illegal.

I think u need to get professional advice on your working hrs , the CAB would be a good place to start.

Having said that I have read on here a few times where live in carers have been employed , they work so many weeks on and some off, most were via an agency but one or two were privately employed by the family .

I like others here have done fulltime caring so know how hard is .
Unless you are very careful it affects your health.

You asked the best way to cope with repetition and being followed around
I found those two hard . I never did find a way to stop mum following me around. I knew mum did this because she felt so insecure , scared( probably thought I was never coming back )when I left the room , the difference was , she was my mum , not a lady I was employed to look after who was following me into the loo .
Maybe if you gave the lady something to do, it all depends on her abilities and what she likes to do
My mum loved folding things, adored her teddy

The repetition too is hard isn't it, it used to drive me nuts at times
I ended up answering on auto pilot , sometimes distraction helps ie would you like a cup of tea or could you help me with this

I am going to give a link that you may find helpful
its about communicating with the memory impaired

 

[lin1]

Here it is
Though I mustmust admit it is a hard act to follow
Hmm don't know what happened their , i'll try again


http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired
We also have a lot of factsheets on here, their is a link to all of them near the top of each page

I hope you get your working hrs sorted out to your satisfaction soon

 

[nams]

Hi Lonecraddock welcome to TP.

I am a live in carer for a company also and one thing to remember is ''YOUR HEALTH IS JUST AS IMPORTANT AS THE PERSON YOU CARE FOR,, 1 - simple rules. If you are woken up more than once a night then a night carer is required or perhaps the family can help.( if you dont mind being woken then you must be paid extra)
2- no matter how much training you recieve, Patience and distraction is the key to keeping you sain .
3- Are you on a roster pattern? as working for weeks on end is too long and not healthy
4- Even if you are working for just 2 or 3 days . You MUST have a break everyday .

I see and hear about so many carers , trained , put in placements , worked like slaves and paid BELOW minimum wage( when they charge the family so much and we , who do all the work get less than half . It makes me very upset as i consider myself and many others to be great carers and go above and beyond what we should. I cook, clean , order medication, do grocery shopping, appointments , etc. Actually thinking about it , the only thing i dont do is pay the bills.

Please contact someone and make them aware of what is happening. Dont continue to work like this. If you need help or just someone to talk to then please do pm me .. thanks for sharing your story and all the best x

 

[longacre]

Blimey. This does not sound right at all. We had 24 hr carers for my mother at home for about seven months before she went into a care home a couple of years ago, but we also employed a 'pop-in carer' ourselves to give the carer a break every day for two hours. In addition, we came up most weekends and would take our mother out each day to give the carer a further break. I wasnt very happy with the agency as we arranged all of this ourselves as I felt it was far too much for the person to be with my mother non-stop. One carer had to leave as my mother started waking in the night regularly and she was really tired during the day. As we were over two hours drive / train journey away from my mother it was also pretty stressful for us worrying if everything was ok. They mainly did a couple of weeks each before a changeover. I would go back to your agency pronto - or change to another one! Are their any family members of your client around that you could talk to as well. I also know other people who have 24 hr carers in place and they have a rota of carers.

 

[dognecks]

The shift is 24hour care, I've done 72 hours in a row so far but next week I'll be doing it for 8 days solid with only an hour break each day.

It's difficult because the care is all inclusive with all housekeeping duties, answering the phone, keeping her company, cooking, receiving guests. She also gets up in the night 3 or 4 times and wonders into the guest room where I'm staying and demands to know who I am so I get very little sleep.

I was under the impression that for this sort of intense care some sort of rota would be provided so I could swap around with other carers perhaps every couple of days. I feel as if my company is demanding a lot from me since I have not had any dementia specific training and only 3 months general care experience!

I would like to take her out but the walk into town is a couple of miles which I don't think would be manageable for her.

Any thoughts on the normality of this set up?

wwwwwwwooooooooooooooooo this isnt write i am a carer trained in dementia, ive done a year nvq 2 and onto 3 and i still wouldnt do what your company is demanding , god this is frightening that this is happening , for you and the company, you are not qualified or experienced enough and should phone quality care commission for advice , as i do when things need answering when i go over the boss, this is very dangerous practice , especially as a dementia patient being alone with u , and for this long, am with everyone else on this one alarm bells ringing!!!!!! please take note on the advise theres good people that care here thanks ,paul