Caring for my mother with dementia - Guilt

[Sophie_210212]

Hi Guys

I'm Sophie and new on here, this forum is one of the first times i've really spoken out in the open other than to my partner and 2 brothers. I get really defensive talking to people about it as they just don't understand.

I am 30 years old and live at home with my mother who has dementia.
I would like to open up about the arguments that i have with my mother - i know it sounds so so awful but sometimes all the guilt and anger i have just comes out and i end up yelling - the amount of guilt i have after this is awful and i often end up in tear or not being able to forgive myself. Obviously i just mum to understand what im going through as a carer, but she cant.

mum has 1 hour of care an hour at night but the rest is down to me and my brothers but being in lock down its all me. Even the little things like wanting to go on a walk, of course i ask mum to come with but spacial awareness and the extremely slow pace of the walk stresses me out..... is this all normal behaviour or am i being the worst daughter ever.

I love my mum more than anything but just find it so so hard sometimes.

Thank you
x

[susieq]

Hello Sophie and welcome to the forum

No, you are not being the worst daughter ever and yes, your reactions are quite normal. I've been where you are now albeit older than you as I was in my mid 60's when I started to care for my Mum who had Alzheimer's and I didn't have to cope with Covid and lockdown at the same time.

I found the emotional aspects of caring for my Mum were the hardest to deal with - physically I could cope with anything - the incontinence, not changing her clothes, and basic nursing were all much easier than coping with my emotions. I too went through the shouting, getting angry at having to repeat everything endless times. But with the help of others here going through the same thing I came to realise that I wasn't angry with her, but with her illness.

Because of her dementia it's likely that your Mum will forget your outbursts quite quickly so feeling guilty serves no useful purpose anyway. It's often been said here to replace the word "guilty" with "sad" - you have noting to feel guilty about but you can be sad that dementia is slowly taking away the Mum you know and love.

Like you I found going for a walk with mine to be a very slow and tiring process - she did have severed osteoarthritis which didn't help matters at all so eventually I got her a wheelchair and from then on our walks and trips out were far more enjoyable for both of us.

[sunnydisposition]

Hi Sophie & welcome

What your are feeling is all quite normal. And where does it say you don't have to feel like this. Dealing with dementia is one of the hardest things as human beings. Some of us will have to experience. Guilt is the wrong word try to not see it in this way. You are bereaved for the mother that you knew.

Are you living with Mother through choice. As if you feel there was no choice at the time. As there is an expectation in some societies we look after our parents.

One hour of care a night is not sufficient. So is this private care or social services. You do need more time away from mother. Even if it's just in another room. Where you focus is on you and you alone.

If think some people can sympathise but no one knows your life. Only you know you life and people really don't know what to say or do.

How much help are your brothers giving you.

Are you connected to any local carers groups.

If your mother was able to understand you are not only her daughter but also her carer. What would you like her to know.

Have you ever written a diary on how you feel. Somethings we need to get things out of our heads.

Be kind to yourself!!

[Pet66]

Hello Sophie
I feel for you.
My lovely husband suffered vascular dementia and other health issues.
I too felt guilt. I know I did my very best for him, but often wondered
If you can look up Ambiguous Grief, you may find it helpful. I did.
Don't beat yourself up if you have felt impatient. It's normal. As Suesieq says, it the dementia you feel angry with, not your mother.
Take care of yourself. You are important too

[Ingrid Carers UK]

Hello Sophie

Welcome to our forum, caring can be a difficult time for all sorts of reasons. I'm not sure if you are aware but we are currently running a series of online weekly meet ups for carers to get together and chat informally. People say they've found it really helpful and supportive and it's nice to be able to take a little bit of time for yourself. There's no pressure to share any more than you're comfortable with. Join up details are here:
https://www.carersuk.org/help-and-advic ... ne-meetups

We are also now running a weekly Share and Learn sessions, where we run a series of fun and relaxed online sessions where visiting speakers who share tips and skills on a range of topics - please have a look at the link and see if one grabs your attention.
https://www.carersuk.org/help-and-advic ... e-sessions

Do join if you'd like to, we've had a lot of new carers join the sessions recently and it's a great way to meet other carers.
with best wishes
Ingrid

[Ingrid Carers UK]

Apologies Sophie the links above don't work, here they are again
Care for a cuppa : https://www.carersuk.org/help-and-advic ... ne-meetups
Share and learn : https://www.carersuk.org/help-and-advic ... e-sessions
many thanks
Ingrid

[Ingrid Carers UK]

Hello Sophie
Just following on from your post you could also contact the Admiral Nurses at Dementia UK, who are on hand to provide information and guidance for people affected by dementia and their families. Their details are at:
https://www.dementiauk.org/get-support/admiral-nursing/
with best wishes
Ingrid

[bowlingbun]

Sophie, I don't understand why mum has so little support.
How much care does she need?