I am new to this website. I am only carer for my Mum who has Parkinson’s disease and heart failure. I also am married , have 2 kids and work part time.
I find things extremely difficult and I am resentful that my life is not my own anymore. I am run ragged and I cannot get over the guilt feeling of not being there or not wanting to be there every single day.
You have a lot on your hands and your feelings are normal.
If you haven’t had a care needs assessment done please contact your local authority for one.
It is means tested to £xx savings.
Please keep checking back for replies from others who will know more about getting help.
Have you been on the website for Parkinsons which will be helpful for you as well.
Caring for your mum doesn’t necessarily mean wearing yourself out looking after her, it could instead be getting the care that she needs to care for her.
Please don’t let pride or whatever prevent getting help for your mum, you cannot do all this, you will be a wreck in a straightjacket or in intensive care.
Be kind to yourself.
Think of your role now as being “parent” of your mum.
You have to make the best decision for her, as you would a child, because nothing will change unless YOU make it happen.
You also need to consider your own family and your own well being. Your kids deserve a happy mum, not someone exhausted.
What sticks out initially from your message is that you are SOLE carer for mum. This must change.
When did mum last have a Needs Assessment, and you a Carers Assessment from Social Services?
Someone once said that the first sign of civilisation is where someone cared for another person who would not have survived without them. I disagree. I think it’s pretty much hard wired into us: archaeological discoveries show clearly that our ancestors - at least as far back as the Neanderthals, about half a million years ago - cared for people with severe injuries.
But that doesn’t stop us from having issues with it. I’ve been a carer for more years than I care to discuss, and I have moments (typical British understatement) of resentment and guilt. We’re our own greatest critics, telling ourselves for simultaneously caring too much and too little. Guilt and resentment want it both ways.
But while they’re a natural part of us, it doesn’t mean we can’t deal with it. For one thing it’s a sort of subconscious recognition that you need help. And getting help is a good thing. It gives you a chance to get a break and recharge.
I suggest you contact the Helpline: they can point you in the right direction and may be able to signpost you to your local support services. Call 0808 808 7777 any time Mon-Friday, between 9am and 6pm.
Hey and thanks for the replies.
Mum fell just over 2 weeks ago and broke her wrist which is now in a cast so things are even harder. I managed to get some temporary care organised but only while the cast is on.
Mum is adamant she doesn’t want anyone in when she is out of cast. I tried to get a cleaner organised the other week which she had agreed to but now she has backtracked as she is worried cleaner would bring covid in. I cannot do anymore. Or can I take anymore. I really am at breaking point. Couldn’t concentrate in work today and really wished I could just tell them “I’m out!”…it would be one less thing to have to deal with.
Mum has never had a proper care assessment because she says she doesn’t need or want help but yet she relies on me and just assumes I will do it.
I don’t think she gets it. I broke down some time ago to her one day and she just looked at me, kind of sniggered like it was a joke and then asked me when I could take her out to get bloody wallpaper or something . I was so annoyed.
I have had a look at Parkinson’s website and have now managed to contact the local nurse who hopefully will come out and maybe assess Mum. There is a local group but again I can’t get her to it as I’m working and Mum won’t go on her own, it’s really difficult.
I keep telling myself tomorrow will be a better day.
The local group will have a group leader, phone the leader and have a chat about things, there might be some other leads for help for you.
Glad to hear you have a Parkinsons nurse coming to see your mum.
You are at breaking point/about to break.
I don’t know about Parkinsons if it has any effect on the mind/mental state/cognitive comprehensions.
So I don’t have any suggestions about how to get her to agree to help.
Unless you feel you can just not go for a couple of days, telling her you are unwell so she can see that she does need someone.
No, your mum won’t want or need any help while she thinks you are there to see to her.
As for not wanting a cleaner due to covid - you are going round there and you go to work and your husband works and your children go to school, you have so much exposure to covid whereas a cleaner might live alone and just want one private client - you’d be very lucky to find that though!
The rejection due to covid is bunkum because of your lifestyle and exposure to covid.
Don’t be alone, there is here and the Parkinsons site.
I hope you can get some hope of things getting easier and your mother getting independence.
I’m going to ask just one question: What would happen to your Mum if you were the only person providing care and something happened to you so you couldn’t?
She’d have no choice but to accept other help. But refusing help from others makes that situation far more likely. So, a little help now might prevent things from getting worse for you and ultimately for your Mum. Someone needs to tell her this.
Welcome to our forum! I can see other carers have suggested you get in touch with our helpline. I wondered if you are aware of other ways you can connect with carers, we are currently running a series of online weekly meet ups for carers to get together and chat informally. Join up details are here: https://www.carersuk.org/help-and-advice/get-support/online-meetups
We’ve had quite a few new carers join the sessions recently and they said how helpful and supportive they’ve found the session, and it’s nice to be able to take a little bit of time for yourself.
We are also now running a weekly Share and Learn sessions, https://www.carersuk.org/help-and-advice/get-support/share-and-learn-online-sessions these are a series of fun and relaxed online sessions won a range of topics - please have a look at the link and see if one grabs your attention.
with kind regards
I am going to approach the subject again with her to see what the reaction is. I imagine she will laugh at me again and think it’s all a big joke which is hurtful. So frustrating also.
I looked at some of the share and learn videos there but I cannot seem to access them. Unfortunately most of the live sessions don’t suit me as I’m either working or doing school run, homework’s etc .
Good luck Joanne
In the most understanding way towards you, your mother is being unfair on you when you have work and family by expecting you to care for her to the extent that you are.
Facilitating your mothers independence getting carers and cleaner in for her is still caring for her.
In defence of your mother, it’s a terrible condition and living alone it must be hard to cope.
If she laughs ask her what is so funny about it,
That laugh could be a key sign, what is behind it? You might be better off not knowing.
It could be the catalyst to sorting it all out.
I don’t know anything about Parkinsons and what it does to the mental wellbeing or the state of mind.
But I do see someone, i.e you, on the edge and you need to get your mum independent for your own sanity.
Completely agree with Charles’s point about what would happen to your Mum if something were to happen to you. So just wanted to share my experience with you:
I’d been thinking exactly this about my Mum (eg what If I got covid, broke leg etc)) so talked with her about this and about idea of getting care agency once/week so they could get to know each other over time and if something happened to me she could turn to them. She agreed, started once/week, now twice/week, plus extra if needed.
I can’t tell you how HUGE a relief this felt to me when she started this.
Then I actually DID have an accident and thank goodness we’d organised this a few weeks before. Carers came, that she already knew and liked and they knew her.
One of my greatest worries has always been that it would be so hard for her if something were to happen to me. I cannot overstate how much emotional relief I have felt since this connection with the care agency has started.
I know all our situations are different but I hope you and your Mum may be able to come to something even though she may say she doesn’t need or want help from a care agency (my Mum also said this at first but after talking it through was fine about it). If she is connected to a care agency both you and she will already know who to call if you can’t come.
I chose the care agency after looking at reports on the Care Quality Commission website. Took a bit of time going through it but worth it as they are very good.
Best wishes and take care of yourself