My mum was recently diagnosed with Dementia at the age of 56 and I have been sharing caring responsibilities with my Dad. Due to COVID I have been working from him so have been with her 24/7 since the start of the pandemic, but my Dad works shift work so is not home all the time. The council have arranged for a carer to come to the house for 40 hours a week to help as I need to focus on my work and expect to be returning to the office soon so can’t leave mum on her own. However I feel incredibly anxious about letting a stranger into our home to leave with Mum. The house feels like the safest place for me to look after her and I don’t like the thought of letting someone from the outside in knowing how vulnerable her condition is making her. The rational voice in my head is saying this is a good thing but the anxious voice is much louder and I can’t shake my fears away.
56 is a tragically young age to get dementia.
Remember the more help mum has the longer she can stay at home.
Will it be the same carer every day, or a team?
Any new change is going to take a while to get used to, so try to think of a routine, which involves taking mum out for a while each day to give you time completely to focus on work.
Have you written up details of the usual routine. Get a written list from SSD of exactly what they should and should not be doing as far as they are concerned.
40 hours is a long time, so the carer should be doing everything mum needs, washing, hoovering, cleaning bath and kitchen, preparing food etc.
Don’t accept “we don’t do that” unless you are sure it is true. If in doubt, ask SSD.
Is mum claiming PIP?
Hi & Welcome Ellie
Sorry to hear your Mum as diagnosis with dementia at such a early age. It must be such a worry to all the family.
The fact a care package has been offered for 40 hours a week. It’s important to try and use it to you may well lose it. I guess although you say carer there could be several carers. Having other people in your home does take getting use it. But if the care assessment documentation has been filled out comprehensively. Hopefully you Mum’s needs will be met.
What are you main concerns?
Hi Ellie
Really sorry to hear about your Mum’s situation and the ability to expand the circle of caring support is challenging. Can I suggest contacting the Carers UK’ advice line either via adviceline@carersuk.org or call the advice line instead Get in touch with us | Carers UK - they will be able to give you more tailored advice about working with paid carers?
Kind regards, Tony
Thank you for your replies. Things have been moving very rapidly since her diagnosis and the care has been arranged to begin this week. To be honest when we were told it would be 40 hours I felt completely overwhelmed at the thought of her spending that long with someone she doesn’t know. Today was the first day and I’m still currently working from home. I know the help is intended to allow me to concentrate on my work, but I found the opposite to be true, in that I found myself on edge all day with the door open trying to hear any conversation that was going on. One of my biggest worries with my mum is how people will react to her as she doesn’t immediately present as someone who is vulnerable (being as young as she is) and of course the dementia is a hidden illness. This I feel stems from some experiences we’ve had recently in public, so for me the house is a safe place away from that and I’m fearful of letting someone into that. My mum’s behaviour is strange and her vocabulary is becoming limited; I can anticipate her needs but I worry that someone else won’t. We’ve had conversations with social workers where I’ve admitted how challenging I have found my responsibilities especially during lockdown and thought assistance would be the answer, but I feel more anxious about this than ever before. I feel guilty typing this as I know we are lucky to have the help but it’s such an adjustment and I feel totally uneasy about the situation.
Ellie,
unless you or your Dad are prepared to give up work, (which could be for many years,) I can’t see what other answer there is?
Are you using care workers supplied by an agency? If the agency are providing consistent care workers, then they will get used to your Mum and her to them - however, this won’t happen overnight. If the agency are sending lots of different care workers, then that will be less successful and you might have to approach the agency manager or consider having direct payments and employ people directly.
After Covid, you could look at day centre provision, but I think your Mum may find that harder to cope with.
I know it is tough, but it is early days.
Melly1
Everything your are feeling is totally normal and understandable. Many will relate to it and it will take time to adjust. At least you are at home and on hand. You are allowed to keep asking questions. Carers really don’t mind you asking and it helps them. The quicker they get to know how Mum functions. The better equipped they will be. Are the carers trained in dementia. If so they will have the necessary tools to assist Mum.
You need your own support. Are you linked to any carer groups in your area. If not this would be a good place to start. There will be local dementia organisations. Try to see if you can make contact. As there will be other families who might be able to give you some reassurance.
I feel guilty typing this
There is no need to feel any guilty what so ever about your situation. You have done the right thing - in asking for help. It’s making sure it the right help for Mum and you. Until you have try it you will not know.
Hello Ellie
It’s very natural that you feel anxious.
My experience is that my lovely husband had vascular dementia and other issues. Admittedly older than your Mother. Started approx 68. Whatever age it sadly starts, it gets worse and help with carers is very much needed. Please give the carers a chance, as you are obviously very young yourself, and you need to be able to continue with your work and life. I am not saying this lightly, as I know how heartbreaking it is, to watch a loved one decline.