Younger carer

acaves

Registered User
Sep 27, 2016
2
0
Hello everyone
Apologies for typos I am on the train typing this on my phone.

I am new to Talking Point. Bit of background I am 32 and have been caring in some form for my mum with vascular dementia since she was diagnosed 4.5 years ago. Mum is now 65 years old.
When she was diagnosed she was living with my Dad in Luton. He sadly passed away in October 2014 suddenly. Five days later I have birth to my son. 2 weeks after giving birth my mum moved in with me and and stayed with my son, partner and I for 9 months I.e. my maternity leave from work.
During this time we cleared out and sold the family home for 30 years of living there and settled her into an assisted living flat with carers 5 minutes from us.

Mum has deteriorated and I'm not sure how long she can stay there but she will remain there for the time being.

I work full time in a demanding job, travel over 3 hours a day, care for my son and visit mum most nights doing things the carers either having done and haven't noticed. They are not dementia trained.
I am exhausted and emotionally drained.

My partner and I have limited support . His mum lives far away and cares for her dad. My brother lives in India. My mum's sister comes to help when she can.

I am struggling as I feel I am relatively young to be caring for someone with dementia and there is little support out there for people like me I've looked for local support groups but they are aimed towards carers in their 50s and 60s.

I wanted to let off steam and develop a support network hence why I am here.

Words of advice etc welcomed xx:)
 
Last edited:

father ted

Registered User
Aug 16, 2010
734
0
London
Dear acaves,
I was tired just reading all you do and congratulate yourself on all you have done for your Mum so far. Bringing her to be with you while she was grieving and then arranging a place near you with carers to support her you have done a lot.

For what it's worth I would contact social services to see if maybe your Mum could attend a day centre to keep her stimulated and then you would know that whilst she was there you only had to cover the hours outside of this.

I would also give the support groups ago. Caring can be tiring, frustrating and isolating no matter what your age and the years between you and other carers will fall away when you find out how much you have in common. You might surprise yourself and find younger people there, there are no limits to how you should be, the things you like etc and at the risk of sounding like an old *art age is just a number! Give yourself a break and feel good about how you are coping and take any help and visit any group that is suggested.
 

Oh Knickers

Registered User
Nov 19, 2016
500
0
Acaves,

Wow. You have a young baby AND you are picking up the pieces for your mum with dementia AND you are working AND you are travelling 3 hours for work. WOW.

It is a little concerning that Sheltered housing is not aware of dementia. As Father Ted has suggested. Have you had an assessment of your mum?

In view of how much you have on your plate, I am going to suggest you contact the organisations below. Which will add to your load initially but will help lower your load in the long run. You need to enjoy your baby and enjoy time with your mum without the stress of having to pick up the pieces every day. I have found these organisation founts of knowledge and pools of serenity. Might come in handy right now?

Scroll down the page and put in your mum's postcode and the local number will come up. They will know how the local systems work and will give guidance. They will also give you guidance on what stage your mum is at. Their help lines are open on Saturdays. Dementia and new babies share the same issue. You are learning on the job for both of them.:)

Alzheimers Society
https://www.alzheimers.org.uk/

Age UK
http://www.ageuk.org.uk/

Please keep posting. Other posters will come along and also give you benefit of their experience.
 

Ottillie

Registered User
Jul 12, 2017
16
0
Acaves,

Wow. You have a young baby AND you are picking up the pieces for your mum with dementia AND you are working AND you are travelling 3 hours for work. WOW.

It is a little concerning that Sheltered housing is not aware of dementia. As Father Ted has suggested. Have you had an assessment of your mum?

In view of how much you have on your plate, I am going to suggest you contact the organisations below. Which will add to your load initially but will help lower your load in the long run. You need to enjoy your baby and enjoy time with your mum without the stress of having to pick up the pieces every day. I have found these organisation founts of knowledge and pools of serenity. Might come in handy right now?

Scroll down the page and put in your mum's postcode and the local number will come up. They will know how the local systems work and will give guidance. They will also give you guidance on what stage your mum is at. Their help lines are open on Saturdays. Dementia and new babies share the same issue. You are learning on the job for both of them.:)

Alzheimers Society
https://www.alzheimers.org.uk/

Age UK
http://www.ageuk.org.uk/

Please keep posting. Other posters will come along and also give you benefit of their experience.

You must be so exhausted. I have reached a point of calling helplines before and they were amazing, having someone to listen to you and absorb the stress you're under, even for a short time, really helps, also call your local social work services, and in some small way I hope posting here helps too, you are not alone. There are some great people on here with expert knowledge, I'm just a newbie but have lurked for a while.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Goodness me you are sailing close to the edge!

You say that you dont know how long your mum can stay there and I have a feeling there may be a crisis that pushes everything over the edge. You might want to go and look at care homes in the area and put her name down of the waiting list of one (or two) that you like as a sort of plan B. Just because her name is on a W/L doesnt mean that she has to go into one, even if her name comes to the top of the list, if you dont think she is ready - her name can remain on the list. What it does do, though, is give you a heads up if there is a crisis and if your name is on the waiting list when the proverbial hits the fan they are more likely to offer her a place.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hello acaves
welcome to TP
you're doing an amazing amount - and so deserve some support
if you haven't already, do contact your mum's Local Authority Adult Services for an assessment of her care needs - even in an assisted living flat, it may be that home care visits, a sitter, a befriender time at a day centre can be organised and will take some of the load off you
if your mum has savings over £23250 she will fund the care herself, below that the LA will at least part fund - I guess you will have organised Attendance Allowance for your mum, and checked with her Council about a disregard of her Council Tax - both will help her finances
here's a link to the main AS site listings of local services, something in your area may help you
https://www.alzheimers.org.uk/info/20011/find_support_near_you?_ga=2.51833705.110836396.1500053785-213745934.1462100281#!/search
and a link to a national listing of care homes - check the CQC website too
https://www.carehome.co.uk/
might be worth chatting with the carers' manager to check that the care plan they are working from is adequate for your mum's current needs - when dad was still at home, I'm afraid I created a chart of the tasks to be done during each care visit - putting the tasks in order with a breakdown of how to manage dad through each one and a note of where I kept anything that might be needed - I thought I was being a bit bossy but when I spoke to the carers, they were just pleased to know exactly what to do and where everything was, so they could simply get on with supporting dad - the chart was much more detailed than the care plan and very specific to dad and his house
best wishes
 

Rachael81

Registered User
Dec 31, 2015
59
0
Dewsbury, West Yorkshire
Hi acaves,

Feel for you as there's quite a few parallels between us:

• I'm not much older than you at 36
• My mums got vascular dementia too
• I still work full time
• I have no siblings to support me
• I see what carers neglect to do (yesterday it was make sure mum ate!)

I don't have a child to look after but am getting marrried next weekend!

Let me know if you want a 30-something chat about dementia, or anything else
 

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