Hello everyone!

[francesca16]

I have just joined and thought I would introduce myself. I am 27 years old and my 63 year old Mum got diagnosed with early onset dementia last year. She is getting significantly worse and I'm finding it extremely difficult. We do not have a big family, there is me, Mum, my brother and my uncle (Mum's brother). My brother does not live close although has now moved closer (he used to be 5 hours away, now only 1). I live 20 minutes from Mum and my uncle is 10 minutes. I am really struggling with the guilt of not doing enough.

I work full time Monday - Friday and I try to see Mum every weekend and if she needs anything in the week then I am there. I luckily have a very understanding workplace so I can drop work in emergencies or appointments for her. I do find myself being exhausted trying to keep up with it all and also trying to process the diagnosis. I never imagined my Mum becoming so ill so young, she is changing right in front of me. Nevertheless I am trying all I can. My uncle is also there a lot in the week and calls Mum every night to remind her to take her medication. My brother has buried his head in the sand with living far away and I feel very on my own with making big decisions i.e care.

I am trying to organise some form of carer to check in on Mum once a day or something as she still lives at home for now. However she has been extremely resistant to help in the past. Does anyone have any advice on who to contact or where to start with that? It's just so we have peace of mind that she is being checked on daily.

She also has 2 dogs (german shepherds) and I do worry sometimes about her having to care for them aswell as herself however she would be lost without them. One of them has severe allergies and requires daily medication and I do worry about that.

Sorry I think I have used this as a place to put my thoughts, but I am hoping that being part of the forum will be of some help.

 

[Gosling]

Hello @francesca16 and welcome to the Dementia Support Forum which is a very supportive and friendly community. I am sorry to hear about your Mum's dementia diagnosis.

Caring for someone with dementia can take over one's life, and I know how challenging and frustrating that can be at times. Particularly you working full time and trying to do your best to support your Mum. It sounds like you would be wise to contact Social Services for a Care needs assessment for your Mum. Also have you thought about organising Lasting Power of Attorney because that ideally is best sorted at an early stage. The following links may help:

Make, register or end a lasting power of attorney

How to make a lasting power of attorney (LPA): starting an application online, choosing an attorney, certifying a copy, changing an LPA.

www.gov.uk

The care needs assessment: support for people with dementia

This page looks at how a person with dementia can get a care assessment, who does an assessment, how they are carried out, who makes the decision, and tips for making the most of the care needs assessment. It also explains the eligibility criteria.

www.alzheimers.org.uk

Now you have found us I know that you'll benefit by being able to share with others, join in conversations, ask questions or let off steam. You'll find empathy, true understanding and helpful suggestions.

 

[Jake's Nan]

HI Francesca, I help care for my brother, age 60, diagnosed 2 years ago. I recognise a lot of your feelings and thoughts. I contacted social services about care but they took so long to get back to me I got ball rolling myself. Went with a company called helping hands as thought more back up during holiday/sickness etc. My brother wasn't sure at first and we just do 3 lunchtime 45 minute sessions atm, he adapted quickly and asks now when are the ladies coming. Brother's doctor got mental health nurse to phone me and it was so good to chat with someone who really listened and was supportive. Rest of family are not local. So much to think and worry about my brother has changed so much. 💯 get power of attorney.

 

[sdmhred]

Welcome @francesca16
I care for my mum with dementia - it’s a tough call isn’t it.
Im too tired to write much more now but I wanted to say hi. Why not start a diary or blog here and ask specific questions as you go - mine is called Our magic bitter sweet moments so you can read some of my journey if you like xx