I am hoping I get some useful advice. We started to have carers come for my dad and it has been about a month. They come 3 times a day, 20 mins each time. The rest of the day my mum sees to my dads care. In the 3 calls we have, the carers do very minimal work, they come late and when they do turn up my mum has done all the care needs for my dad. We are paying for this care and my mum is fed up and wants to stop it but I am afraid she is my going to suffer more, she is not young and gets tired and drained. We have changed carers and the same situation still occurs. My dad also doesn’t listen or wait and ends up doing things himself and causes himself to fall! I feel like my parents are just suffering and the purpose of carers is to relieve them and it is not really happening. Any useful tips please or words or wisdom? Thank you
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Khalissi
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hi. I feel your pain, I had the same experience. I can only suggest you keep changing care agencies, and hopefully find some that are better, it took me 4 changes and then the carers left that company, I tried once more and gave up and looked after my husband myself for the last year of his life. What I did do though was to have a carer come and sit with my husband daily for about 2 hours so I could get out and do things I wanted to do.
Sorry if this dosent help, I hope you sort something out.
Thank you so much for sharing and good to hear we are not alone. When you had carers come and sit would they attend to your husbands needs eg: toilet and clean etc? I am just thinking this might help my mum better and be able to switch off for a longer period rather than in 20 mins short burst .. will also try another agency too x
By the time that started happening my husband was bed bound and could not love, all they needed to do was to give him a drink. But they should do what ever you ask them to do. When you employ a new care agency they should send someone out to access what they think they should be doing, at which point you tell them exactly what you want doing.
If they don’t come out to you first, I wouldn’t go with that company, they need to know how your lived one is before they can know what and how they can do things.
This may sound a bit weird but when I had a new agency come in, I would tell them I will assist by telling them and showing them how to handle my husband, that way I could assess them to make sure they would be able to handle him and do things properly.
Carers are always in a hurry to get back out the door so cut corners etc. if your paying for them to come and do personal care for your loved one then they should stay for the time you are paying for. And you have that right to say if you don’t think they are doing things properly or the way you want them done.
I might sound a bit bossy, but I was very friendly towards them, but they just know I wanted things done properly.
You need to decide what you want them to do and give them clear instructions, I’ve found a good carer is amazing and a poor one is very lazy so clear instructions help.
Also your mum needs to stop doing the things she wants the carers to do - that part is more difficult!
hi Khalissi, we’ve got three amazing carers for mum and they alternate over the three visits per day. We found them by asking around for recommendations but maybe we’ve been very lucky. They do all the bathing and toilet needs and get mum to the chair but they also brush her hair and have even bought her clothes they think she’d enjoy wearing. One of therm’s mother also had psp and I think that had made her very fond of our mum so that makes a difference. We want to move mum closer to one of us but losing the carers will be a wrench. I just wanted you to know there can be good people out there amongst the ones who don’t care as much.
The main caregiver and the group of relatives who try to help the main one have to create a stable and efficient external help group to cover 24/7.
With various treatments the disease can be slowed down but it will continue to progress becoming more complex over time.
Forming the stable external aid team is a slow, complicated task that usually requires interviewing and testing a large group of applicants.
It is advisable to form a stable external help group as soon as possible so that both the patient and the caregivers gain confidence and adapt to the evolution of the disease progressively.
JEN2017 said: “Nobody could/should go through this hard disease alone. Especially the caregiver”.
Someone in the community of caregivers once wrote “it is not my job to care for my loved one; it is my job to find the best care for my loved one”.
Sounds like the carers you have are not the right fit. We have had carers for 18 months and it has been a journey. When they are the right fit, life will be better for everyone involved. If your mom is stressed out with the carers she has, she needs different carers.
Thank you everyone for your thoughts and advice, today mum called me and was I tears because the carers refused to help my dad and she ended up doing it, that was enough for me to request for different carers, I think this is going to be a long journey for us, they are so quick to get out the door that we are just not seeing the benefits of carers. They didn’t wash dad properly or clean his room , I’m not sure what they are doing, my mum said she tells them what to do but they don’t listen. Thank you again for sharing everyone, so thankful for this group.
I’ve just had an incident that the carers have said they don’t clean up carpets, even if there are feces on them - believe me there are some great carers out there but you need to keep trying until you find them.
If your mum wants housework done, maybe get a cleaner in once a week.
When your Mum says they didn’t wash him properly what does she mean? No one is going to do it as well as your Mum will but what is acceptable and do you have a regular carer or is it different people all the time?
Hi when we were looking for Carer’s for our mum the company we chose would do not do anything less than an hour as they said it was impossible to give the right care in less time.
I found one company who would do half an hour at night when I couldn’t go to do eye ointment before bed and make a drink but their time keeping was unreliable and mum was stressed at that.
I also tried a PA from the council list who sat with mum for a couple of hours once a week. She built up a reasonable relationship with mum and they played dominoes and ‘chatted’ and had tea. If mum fell asleep she would do jobs off a list. All of these were before things progressed so not sure if any of this helps. No one does any of it the same as you in my experience. All the best
I am so sorry for your mother and what she has been through. Carers are supposed to be on your side! When you hire carers you have to train them, show them how you want things done, make a checklist, set out your expectations from the beginning, communicate, be warm and respectful, and do express gratitude when they get things done. I agree if you can arrange a decent block of time for relief and a stable team (otherwise training each one is very exhausting) then that is often better and they can build a better relationship with the person needing help. It does get expensive. Figure out which specific tasks should be covered; they should absolutely be able to help with toileting/diaper changing, transferring, bathing, dressing toothbrushing, feeding etc, and that needs to be agreed upon at the outset with the carer/agency. There are great, experienced, compassionate people out there and they are worth their weight in gold (though unfortunately they are not paid that way).
Thank you everyone! So we have explained what is required etc. Today they refused to assist dad to the shower and toilet (which is only 5 steps away from his bed). They gave dad his walking stick and said he needs to go himself. I called the agency but I don’t seem to be getting no where. Am I best just cancelling the service and finding another agency? They continue coming late and as lovely as the carers are personality wise it’s just not working. Today as I was round, I explained to them whilst dad can walk some steps he needs to be guided and the walking stick is more of a hazard than a support for him. Both parents want to cancel the care plan but I fear what will happen if we do and impact on mum and dad as a result. This disease is so hard, dad is not totally bed bound and can walk little steps and we would like to encourage some walking while he has fight in him and that is his preference too. He finds it hard doing his business in the commode. I feel so powerless
We advertised and employed a carer direct to come in for 3 hours at a time. Ruth has her care done by the same person who she gets on well with and who really likes her too. And the carer is not in any rush and is earning proper money for the one job ....but all costs money I fear.
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