How do you know when it’s time for help?

[robinbird96]

Hi all,
I’m 24 and moved back home after uni to help care for my mum who is 56 with early onset Alzheimer’s.

For the first two years at home things were fine as I didn’t have a job so had lots of time to spend with mum and keep her active.

My dad works full time as a taxi driver but fits his hours around her.

Recently, my dad has been adamant that I resume my career and start my life. I work from home but I’m finding it increasingly hard to look after mum. She paces, opens the front door for no reason, has accidents. I don’t know how my dad would be expected to do all of this alone if I move away (which I hope to if I don’t feel too guilty about it).

Mum is adamant that she doesn’t want a carer but at this point I’m at a loss of what to do.
I wouldn’t even know the first steps to take as obviously someone with young dementia has different needs to an older person living with dementia.

Any help and advice is appreciated.

 

[Violet Jane]

First of all, you are a wonderful daughter for doing so much for your mother. You are very young to have to be doing this right at the start of your adult life. Your Dad is right that you need to move on with your own life; I'm glad that you have a job now.

Your Dad and you need to sit down and make a definite plan. Your Dad not wanting you to put your life on hold will not change things without practical action. People will be along to suggest sources of support but, in the meantime, may I offer the following ideas:
• You could get your mother a place in a day centre for one or more days a week
• You could get carers in for periods of the day to supervise your Mum (it’s not clear how much help she needs with washing and dressing, going to the toilet, eating and drinking)
• You could enlist the help of other family members to look after your Mum for a day or half a day each week
• You could try to get your Mum to wear pull-ups which will reduce the amount of washing and clearing up you / your Dad has to do

One thing that you will learn is that people with dementia will generally resist the measures that are needed to help them and their carers. They won’t want to go to a day centre / have carers / wear pull-ups for example and you have to be persistent otherwise nothing changes for the better and things generally get worse. To avoid carer burnout or collapse I’m afraid that there is an element of insisting on certain things even if the person doesn’t want them.

I really hope that you manage to sort something out. You are only one year older than my elder child and it is very sad that you are dealing with the reality of dementia at such a young age.

Do keep posting with your questions and thoughts. There is a lot of knowledge and empathy on this site and people will be more than happy to support you.

 

[Jaded'n'faded]

Your dad is right - you need to live your own life. It's an important time for you, getting started in a career, etc.

But you can still be an enormous help to your dad, because apart from him, you're the only one who knows exactly how things are with your mum. That makes you an invaluable resource for him when he's feeling down and needs to let it all out. Once you get your own place your role will certainly change but there are lots of ways you can still help your father, whether it's helping with the inevitable paperwork, helping him source carers, day care or whatever he needs - maybe going over there to give him some time off on occasion. If your mum is resistant to carers, maybe get a cleaner/gardener to help your dad out for now, then she'll get used to 'helpers'.

Don't feel guilty. Pre-dementia, your mum would have insisted you live your life to the full - that's what both your parents want for you.

 

[Bunpoots]

Welcome to Dementia Talking Point @robinbird96

As @Violet Jane has said PWD never want to accept carers and can’t understand why their family can’t look after them. The exhausted family members have a different viewpoint!! So most people seem to find that the best way forward is to decide what sort of help you need as a family and then find a way to introduce it. I started by convincing dad that he’d be doing the “cleaning lady” a favour by paying her to clean and help with laundry and gardening and then increased her workload as he needed more help. By the time carers were needed he was used to having people in to help with various things to it wasn’t too hard - although he always said he didn’t need any help if asked.

Your dad is right, you need to be thinking about your own future now and, as @Jaded'n'faded has said, you can still be a massive support to him even from a distance if you decide to move out.

 

[Chaplin]

Some practical advice I hope you find helpful in addition to the suggestions above.

Getting a care needs assessment - Social care and support guide

How to get assessed by your local council to see what type of care you need.

www.nhs.uk

if you’ve not done so already, ask for a financial assessment too.
Ask about the local process for incontinence pads.

if your mum had any particular interests/hobbies try and locate local groups she could attend.

Remember, we are not superhuman and what some of us try and manage at home alone is managed by a team of experienced staff in care homes, 24/7. You & your dad are doing a great job caring for your mum, but you do need to start your career but helping put some safety nets in place will give your parents the support they need and hopefully give you some peace of mind too.

good luck with your new job and who knows, your mum will hopefully enjoy some new stimulating days too.

 

[imthedaughter]

Hi @robinbird96
My heart goes out to you, it must be very difficult to juggle work and care like this. Are you even able to to concentrate on your work? As other shave said and your dad will, I'm sure, support, you need more help but you need to plan it out.
In terms of helping mum accept help, perhaps the carers could come to help you? Or a day centre could need your mum for something important and give her a task or a job on arrival?

 

[lollyc]

Hi all,
I’m 24 and moved back home after uni to help care for my mum who is 56 with early onset Alzheimer’s.

For the first two years at home things were fine as I didn’t have a job so had lots of time to spend with mum and keep her active.

My dad works full time as a taxi driver but fits his hours around her.

Recently, my dad has been adamant that I resume my career and start my life. I work from home but I’m finding it increasingly hard to look after mum. She paces, opens the front door for no reason, has accidents. I don’t know how my dad would be expected to do all of this alone if I move away (which I hope to if I don’t feel too guilty about it).

Mum is adamant that she doesn’t want a carer but at this point I’m at a loss of what to do.
I wouldn’t even know the first steps to take as obviously someone with young dementia has different needs to an older person living with dementia.

Any help and advice is appreciated.

My Mum is much older than yours, but she never liked the daycentre - bingo and jigsaws was how she described it! However, pre-covid, she did enjoy groups run by Age UK and Mind, which offered lunch, quizzes and activities. Unfortunately, these aren't run nationally, so it's a bit potluck what is in your area. We also attended (I had to accompany her) a gardening based charity and a church run singing group, which she loved.
I only found these things by trawling the internet, but there are things out there. It's worth looking at the old age services offered by your local council. I know your mum's not old, but most dementia things are geared to older age groups.
Mum really liked the social interaction these groups provided, and they gave me a very welcome few hours break every week.
These things are starting to open waiting lists now.

 

[Eogz]

Hi,

if you don't have one already your mum is entitled to a care needs assessment with social services. They will determine what level of care they can provide your mum, there is a financial cost to this though and a financial assessment would need to be done also.

An assessment opens up the door to accessing care and support, it's not all carers coming round, there are other options as well, equipment that can help and other care options.

A Social Worker will be able to talk you through these options and if you aren't satisfied try your local advocacy service who may also be able to point you towards services available.

You don't have to use the offer made by social services but it does offer a back up when needed,

Speak to your Dad and have a think about it.

Cracking Job you are both doing, but also think of your own wellbeing as well.