I don't know where to start..


I have just joined the forum. I’m 43 and in a position where I’m at home with my elderly parents and the primary carer for my elderly mum who has Parkinson’s and Lewy body dementia. I have a great and very supportive partner who has remained unwaivered throughout everything that has happened and without them I wouldn’t still be here. But unfortunately they can’t be there all the time because of work and so on.

I have a few health issues of my own, and I struggle with loneliness and the feeling of isolation as I never see anyone, I’m easily tearful a lot of the time. I have depression and anxiety which has stemmed from issues relating to home and other factors and I have also piled on a lot of weight due to comfort eating from the depression. In addition to that, I have been diagnosed with chronic venous insufficiency, have lymphedema in my right leg and severe sleep apnea, so I sleep with a CPAP machine. I used to stop breathing 92 times an hour prior to my diagnosis. Sometimes I wish I’d just stop completely. I’m sure many other people are in the same boat, and I feel guilty for coming on here and talking about myself like this. But I’ve come to my lowest point, where I wish often that I wasn’t here anymore.

I hate myself for becoming the way I have. I know it’s not just down to me, but even so, my self-esteem is non-existent and I struggle each day helping to take care of my mum and watching her get less and less every day is just… I can’t even think of the words. I keep questioning myself, what else can I do? am I doing enough? I sit up at night worrying about it until some nights around 4am, driving myself crazy. Nights are the loneliest time when there’s no one around to talk to.

My mum is at the stage now where she sleeps a lot, doesn’t engage much and I don’t even know if she knows who I am anymore. A few weeks ago when I was knelt in front of her, I took hold of her hands and I told her I was sorry. Sorry that I couldn’t make her better and sorry that I couldn’t stop this disease. She just looked at me and smiled and said… maybe you can. I can’t really go very far in terms of time with my partner because we have to toilet my mum during the day, so I feel like I’m trapped here in a sense. It would help if I had, had a better relationship with my father which has never been good.

Tonight my upset was ampliifed when my mum’s carers came in and told me that they are no longer toileting her, either at night or in the morning. They have been instructed by their manager who says she has been instructed by Occupational Therapy, that they are not to do it anymore because it is too in their words “mauling” for them and my mum. I am speechless. It is down in the care plan that they toilet her, and having spoken to OT myself today and having had a visit from them yesterday, never was it mentioned that this would be happening. I don’t know what to do! I said, you might as well fetch her a wooden box while you’re at it! She’s not allowed to walk anymore, she’s now not being toileted! What next?! No showering either?! This is all, aside from my own low mood and mental health, what has brought me here tonight.

I appreciate I’ve kind of written a mixed bag in a forum about carer’s health, but I don’t want to write multiple posts which might be just as annoying. But I would appreciate any thoughts / advice.etc - I’ve always been led to believe that leaving someone sitting in their own business or lying it, is classed as abuse. I really don’t know what to think or say anymore. I can only say it’s making me more ill. I am so tired from trying to fight for things, my partner has taken some of it on. But I just feel like I’m not coping and I don’t know where to go or who to turn to.

I’m sorry to read of your situation. I recognize some of it.
I used to care for my brother who was bedridden and couldn’t reach a toilet or commode himself. He had to use pads. The carers, who came four times a day, cleaned him. I believe it becomes necessary in cases like this. I don’t know what exactly ‘toileting’ is, but I assume it is causing more difficulties for your mother than it used to. I suspect your mother has reached a point where it is kinder not to ‘toilet’ her.

You need to speak to the occupational therapist who has recommended this. The carers will have to follow that and the care plan be changed. I’m sorry that we carers are sometimes left out of the picture. You need to be reassured and if the decision was right I am sure you will feel better about it. Why has it not been explained to you that they were going to do it?

I haven’t read your other post. I know about comfort eating and think if your situation improved you might feel less need for it. I wish you all the best with this.

Who is arranging the carers for mum? Social Services, or Health?
Privately funded?
Is she receiving Attendance Allowance?
Exemption from Council Tax?
This is too much for you now.

Oh, I misread - this is not a multiple post. Yes, better like this.

Care agencies providing personal care must by law be registered by the Care Quality Commission.
Contact them, make a complaint, and let them sort this out.

Thank you for the replies. Firstly in regard to the toileting, sorry, by this I mean getting her up out of her chair and straight on to the commode. We don’t literally walk her through to the bathroom and put her onto the toilet anymore as this is no longer feasible. We put her onto the commode during the day in between the care visits which are to get her up in a morning and to put her to bed at night. We have one carer who is a stirrer/troublemaker, she has zero respect for us or our home, she creates unnecessary drama and conflict with my elderly father (such as not wanting to use the slide sheets on the bed, but wanting an alternative slide sheet and being awkward about it.) The other she told me that my mum isn’t really aware anyway of when she needs the toilet or is going to the toilet to which I replied, Oh YES she does and she is! She knows! She might have dementia but she still knows! I was pretty disgusted by her attitude. Just because someone has dementia, doesn’t mean they don’t know anything or have feelings.

They announced to us the other night that they were no longer going to put her on the commode either in the morning or at night, this has supposedly come from OT. OT have also told me that a sling needs to be under her in her seat all day, which we’ve already said is not currently practical as it makes her slide down in the seat and she could end up on the floor. We’re not refusing to do this, but OT have contacted three companies to do an assessment of mum to find a suitable seat for her and when this is in place, the sling can be safely left in place. But if she ends up on the floor in the current situation, who is liable?

Another thing I dislike about the carers who come in, is their whispering. Myself and my partner heard them whispering last night, and we turned the sound off on the TV which one of the carers commented on. We both heard them whispering about bed baths and some sort of way of washing mum’s hair in bed. I feel like they are slowly withdrawing life from her. I know they don’t care, not really. They’re good at the lip service with my mum but I know it’s bs. I’m not stupid.

Another thing which happened a few weeks back, which we think kicked this situation off, mum went into respite for a week whilst my partner and I had a break. On the day she came out, we picked her up about half 11 in the morning. So she would have had her morning tablet, we give her, her lunchtime one and then the carers do the evening one. The night of the day she came out, one of the carers would not give mum her tablet, citing that the home “might have overdosed her” to which I said… Why would they?! We picked her up at half 11! There would not be time for them to give her two doses and they would not do that anyway! To which she replied, well you don’t know that and I’m not prepared to give it to her. To which I replied oh for God’s sake! I’ll do it myself! To which she replied, well it’s on your head. They know I suffer with memory problems due to my depression and I can’t retain much, but after that night, for the next eight nights it appears that they made the assumption I was giving my mum her medication which I was not, until we had the discussion. They make out that I said I’d do it but I did not and it’s down on their MA sheet for am and pm.

We spoke to OT regarding this when they came in and they pulled the care manager up over it, on Friday. A safeguarding (against them) has also apparently gone in. And it is since then that they are no longer putting mum on the commode and seem to be withdrawing care. They claim OT have told them not to put her on the commode, but they use a hoist to lift her onto the commode so I don’t understand what the issue is. We need to establish the truth tomorrow as to who has said what.

When I brought this up, they stated that if she were to fall out of the commode they would be liable. And I said, well what about the sling you leave under her when you go? She slides down in the seat as a result and you just leave, are you liable for that??

The care company are farely new and I know they haven’t had a CQC review yet, in fact I heard the troublemaker carer drop the other night that she had asked their manager to alter something on my mum’s MA sheet twice but it still hadn’t been done, but she was probably busy because of the upcoming inspection. In fairness OT are right, they are sloppy and in my opinion not professional as we’ve heard them talking about other service users they visit and although I know none of these people, I’ve heard names and personal circumstances spoken about. That along with the whispering they do, makes us all very uncomfortable. Unfortunately, they were the only company we could get that we could financially sustain for mum’s care.

OT are talking about care coming in 4 times a day for mum now, so she needs a social care assessment, I’m not sure what it all involves but I don’t trust social workers and I feel very stressed out by it all.

As for mum’s care plan, it still hasn’t been changed since they commenced duty for us last year. So it’s not even up to date. But as far as meetings with the relevant bodies are.concerned, we have bent over backwards to accommodate the things we have been told we need or need to adjust, we have been open and honest. And we don’t feel like we are getting that in return, and that things are being discussed without our knowledge or consent, behind our backs.

To answer the second question - we privately fund mum’s carers, she does receive attendance allowance and there is no council tax exemption.

I’m worried about you comments about her financial situation.
Who is paying for mum’s care, her, or you???
If mum has under about £23,000, then Social Services should pay for some or all of her care!

The care is being paid for by mum. She currently is over the threshhold. It’s definitely not by me, I don’t have any money!

Do you have Power of Attorney?
Has anyone mentioned NHS Continuing Healthcare?
If not be sure to google “Continuing Healthcare Framework” then look at the “checklist”.
It’s a postcode lottery I’m afraid.
Are you living in mum’s home, does she own or rent it?

Yes we do have POA.
Because of my memory problems I can’t remember if it has been mentioned or not, but my partner says that’s what OT have mentioned.

And yes I live at home with my parents, it’s their home, they built it.

Hello Silva
Firstly welcome to our forum. I’m not sure if you know but we are currently running various sessions for carers to come together online to chat to each other. Many of our carers say they’ve found it really helpful, there’s no pressure to share anything you’re not comfortable with. We also run Share and Learn sessions which are a series of fun related online sessions. I’ve attached the link for you to have a look at Silva. Please have a look and come along, it would be great to see you there
all the best