Semantic Dementia

[Blondie8]

Hi, I have just joined this group today.
I have never come across anyone in my situation so was hoping maybe someone on here would understand or have a similar circumstance?
My Mum was diagnosed with Semantic Dementia aged 61 (she is now 64) which has been extremely difficult, she had to leave her job, stop driving etc. She has recently stopped eating as she says it’s too painful and the food/drink won’t go down / I feel like I’m forever in touch with doctors as something always seems wrong with her every day she complains of a different pain in different areas ?
I don’t live with my Mum although luckily she is very close by, however my Mum has full custody of my Nephew (since he was 4 he is now 12). So not only do I have to help my Mum, I also have to help him. I literally never stop with calls/meetings - doctors/GP/hospital/social workers/benefits for Mum, Young Carers/school/social workers for my Nephew. I have a contact from Adult Carers who is wonderful - but I am absolutely exhausted. I’m 42 and feel like I’m 92 at the minute and trying to hold down a full time job? I love my mum so much and watching her deteriorate is horrific, in just 3 years the decline is bad, I wasn’t prepared for it to be this quick.
Does anyone have a situation like this where I have 2 vulnerable people in a house not living with me, but who I have to try and care for? Any help/advice would be gratefully received ? x

 

[Grannie G]

Hello @Blondie8. Welcome to Talking Point. I hope you will find it helpful and supportive.

You really do need more help and support from those who can give it hands on.

You are in contact with all the services but as long as they think you are managing your situation they will let you.

Please ask whoever you are in contact with for help. I understand help is thin on the ground, especially now, but sadly carers really do have to let the services know they are on their knees before they are listened to.

 

[Blondie8]

Hello @Blondie8. Welcome to Talking Point. I hope you will find it helpful and supportive.

You really do need more help and support from those who can give it hands on.

You are in contact with all the services but as long as they think you are managing your situation they will let you.

Please ask whoever you are in contact with for help. I understand help is thin on the ground, especially now, but sadly carers really do have to let the services know they are on their knees before they are listened to.

Hi Grannie G, thanks for your reply. Yes you are right I have come to realise this more over the last year and I am literally asking for help from anyone I can find who can give it. My family have buried their heads until recently when I had a small breakdown and basically went mad at them all! They seem to be aware how bad it is now and trying to help me more ?

 

[Weasell]

You sound very organised.

Your comment about feeling old struck a chord with me, sometimes I feel ancient.

I presume you have both your power of attorneys sorted.
My advice is to claim every single thing you can. Money pays for cleaners and help, anything that can soften the workload. Are you sure you are claiming the money required ? Are you receiving help in that area? An example being (pip?) may be the wrong initials but the young persons version of attendance allowance.

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

The above thread is useful.

My advice Is to keep posting. You have so many problems. break them into little problems and do separate posts. There is a wealth of knowledge and people to support you along your journey.

 

[Flavelle]

Hi Blondie8
I am so sorry for the knock on impact and ripple effect of your mum’s cruel diagnosis of early onset dementia . Please try and keep in mind your own wants and needs, no matter how silly that may sound. From the outside, easy assumptions can be made re. a considerate person taking on caring responsibility but pause and consider the future first. It’s yours. Just perhaps the complexities of double care role don’t have to fall fully on your shoulders? Your mother’s and nephew’s needs are going to get further apart over time.
There may be some similarities: 4 years ago I found myself struggling to keep my full time job while fielding calls from my parent’s neighbours, health professionals or police. I dealt with ever increasing stuff, both on a personal level and work level. My employer showed no duty of care, I couldn’t continue as we all were without change. So life changed. In hindsight I should have kicked off about adjusting hours and the leadership showing consideration. However, now I have a different life: 3 years full time enmeshed with dealing with all the care and medical needs of two very frail elderly people. Dementia does strip away people (carer included) and as it does so roles shift from chasing, encouraging, dealing with appointments, medicines to sadly accepting that little can be done (& if anyone’s going to do it it’s probably yours truly!) Still shadow people remain, requiring nurturing, tending feeding., and so on.
The stress levels before I got everyone moved towards a new life were intense though. I hope you are OK
Here’s respect, compassion, consideration. Take Care