Is it selfish I want to leave home when my mother has a terminal illness

[Justarandomusername]

We've never had a good relationship she's in final stage of co PD she gets confused aggressive makes untrue allegations about me which some believe such as I steal from her she gets up during night I have to put her back to bed or she constantly shouts on me I feel I'm expected to be with her 24 7 if I go out she will shout help me and there's an attitude from neighbours I've been asked to be with her at night inase she wanders around and I wonder when I'm supposed to get a break or rest I've been offered my own place which I want to take but I know I'll get be for taking it as nobody else seems to want to step up and be there there happy to sit back and let me deal with her and there's an attitude if I dare want anytime to myself I feel resentful and used

Sure just leave her with a bunch of strangers she's going to see it that I've abandoned her shell give up

Dementia is a very cruel illness but it simply isn't possible for you to give her the care she needs on your own. Her needs are only going to get more and more demanding. If she is in residential care you can focus on visiting and spending time with her which will be much more beneficial to her than if you are running yourself ragged trying to see to all her physical needs. You haven't abandoned her. You aren't going to be any good to her if you make yourself too ill to cope by trying to do it all alone.

It doesn’t sound like you’ve had the best of relationships regardless, please do not punish yourself. Your mum is in the best place, with people who can provide care, sadly she’ll only get worse and you will not mange the care she needs. Please look after yourself, it’s not selfish or wrong to get her help.

OP she needs the assisted care and you can go visit regularly.

You need to live too. 🌺

You knew there was something wrong with your mother and no one listened. Accusing a loved one of stealing and becoming more aggressive and confused couldn’t have felt great for her either. Many people with dementia experience this, it’s surprising it wasn’t picked up.

Constant care, with no support or breaks would have been impossible for an untrained daughter to continue..

Be proud that you did your best and cared for your mother while you could.

OP, you tried everything. Ultimately you are not a trained carer, which is what your mum needs. People with dementia are very difficult to handle and you can't do it. The best thing you can now do is let the system take over, push for a residential placement for your mum on a permanent basis and live your own life. Which can include you visiting your mum regularly and cheering her up. She's in the best place for her.

Please seek some counselling to help you overcome your feelings of guilt - they are not justified. Been there, both my parents had it (Parkinsons with my dad, alcohol induced with my mum).

GreenClock

You need to be very robust now OP. Take the property and inform social services. Do not ask permission or apologise. As a PP advised, say that you’ll help out with shopping, admin, and house maintenance but no more. Over to them!

The neighbours are not relevant“

Completely agree. You need, hard though it is, to refuse to be drawn into emotional conversations with social services. Matter of fact. “I am moving out on X date, that is when her care package will need to be in place” .
Good luck for the future

OP, your DM can’t have copd that badly yet if she’s able to get up and wander around the neighbourhood alone. She isn’t remotely at the terminal stage. That’s prob why charities etc won’t help for a good few years yet. Good - you’re not leaving a dying woman.

Insist on help from SS and move out.

This is hard for you but now mum will get the help she needs. Please grab this opportunity to move out before you find they've decided to send her home as she has someone there to care for her. She doesn't need end-of-life care (which is why a hospice last June wasn't offered) but she does need supervision and full-time support. Please get your life in order, become a visitor rather than a carer and don't let the understandable feelings of guilt get to you. Reread your first post - don't miss out on this opportunity 💐

Is that right super twice in the last year we've been told she's at final stage of co pd and they didn't expect her to live long just days but months later she's still here also I've never said she goes outside she gets up and wanders round the house and this is when she falls and hurts herself as she doesn't realise she hasn't got the strength to walk about on her own and its always at night when I'm not with her she decides to get out of bed

In really sorry op, it's so difficult when a parent is like this. My mum had vascular dementia and was similar, confused, aggressive, would get up and wander round at night, we had to keep the door locked otherwise she'd wander outside in her nightie in the early hours, it was awful. Between myself, my dd and my db we managed to care for her but in the end we had to put her in specialist care. Thankfully my DF can be tenacious and he managed to get her in a nice NHS specialist nursing home.

Try and talk to her gp and Ss, you'll have to be brutal and tell them you can't stay with her. They won't do anything whilst you're around. Until she becomes a danger to herself then they won't pay for anything.

@Justarandomusername
Take on board what pp with experience are saying, your comment to super wasn’t needed, I was surprised at a COPD patient up and walking about, at the end they’re usually immobile.
Don’t be so defensive and take a breather and know your mum is in safe hands. Also forget the nonsense with the neighbour, let it go and get on with living your life.

I can only go on my own experience hermammy how does super know her condition isn't terminal I've got every right to respond to comments you don't have to agree with me the same as I don't have to agree with some who have posted

We've offered you advice and suggestions but I've no idea if you're even reading the posts (except for two, you referred to one by giving more info on the neighbours and then to pick at another one). They've all been well intentioned and supportive of your predicament but I'm leaving this thread now as I've no idea whether I'm helping or not. Good luck.

@Justarandomusername

have you been able to visit your Mum ? I do hope you are able to see her settled in this safe space. 🌺

@Justarandomusername
Myself and others are commenting from personal experience, terminal and final stages of a condition can be two different things. Terminal is no recovery but end stage of COPD there is no ability to wander about and be active, perhaps you have the terms confused.
You do not seem interested in anyone’s suggestions, that and focus on a nosey ndn is just odd to me.

Older adults social worker here
Also someone who cares for older relatives who have disabilities including a terminally ill parent.

Your posts are hard to read OP.

I think you said you were Scotland. Either way , when you aren't clear with the local authority, they won't have a clear picture - you can go back to them if you feel things have deteriorated.

PPs have suggested you talk to GP. That's a good start, make a bullet point letter or email that you send to her GP. COPD end stage isn't necessarily "about to die" it depends on the language used by medics and what her needs are- but it does mean she is a poorly and disabled lady.

Am I right in understanding the following- ?

• she is confused and hallucinating
• she makes accusations about things being stolen?
• she wanders ("walks without purpose") out of the house day or night if you aren't home?
• she has unexplained injuries? is accidentally hitting herself by walking into things? What are these injuries, can you write them down and photo as they occur?
• what else are her basic needs? Will she eat, drink, wash, dress, manage her meds, sit still and occupy herself if you aren't there?
• does she know she is ill?
• does she know she has dementia- are older persons mental health team involved ie a CPN
• does she make her own decisions - dementia doesn't mean she can't , it's whether she understands , retains and can weigh up the risks...
• why are community nurses involved ? does she have a wound that they dress or diabetic injections they do?

When you have clearly lister bullet points and facts listed which can be evidenced, then please email them to her GP and ring the local social services to request a needs assessment and read them the bullet points. They have a duty to offer a reassessment if things changed from when they last gave you advice or arranged what they did.

They would have offered you the service they did before as you'd have been asking for a break and possibly things weren't as bad as they are now. You need to be clear that you are withdrawing and no longer able to continue as her informal carer living with her.

Tell them you are withdrawing or reducing your support. The local authority are limited in public funds and have to be careful and evidence everything so help them out. Give them the same picture you suggest to us on here. They won't read in-between the lines so do your best to spell it out.

I think you need to ask HQ to move this to Elderly parents thread. Report your original post and ask for it to be moved.

You will get so much better advice there - they really are a wonderful group of people.
This isn't so much 'a relationship issue', it's a 'caring for disabled parent issue' . Even if your mum is under 65, you'll find better support under that title.

Three my mother has a social worker who sees her every few weeks to assess her needs its obvious that her health is deteriating but as I've said we've been left to get on with it I asked for my mother to be referee to crossroads as I said earlier I asked her social worker to refer her to free up my time my mothers social workers responce was that being refered to cross roads wouldn't benefit my mother but what the social worker would do would be to get some faceless person to phone my mother once week for 5 min to see how she's doing like the one whose responsible for looking after her 24 7 is irrelevant I've made it clear to the drs and social work that I'm finding it more difficult to cope with her as her mental health is getting worse when I told Dr in January my mothers health was getting worse it was even difficult to speak to a Dr most of the time it was a receptionist I was told by receptionist that they had other patients as well as my mother to deal with I insisted I speak to somebody else I was put through to a nurse who came put said her confusion was down to her cop d and her meds I also said that I was concerned about her shaking which she never did before January this nurse literally shrugged her shoulders and said that's as good as it gets so don't blame me for the position were in as I've said its down to go and social work that we haven't had the support we've needed we get more help if we were junkies the systems a joke

If you've stuck it out for this long, it would be a shame to leave her by herself when she's dying.

I stayed with my mum when she was in the last few years of her life (terminal illness). Dying is a scary situation to be in. It was really crap for me to go through, but that was nothing in comparison to what my mum was going through. I'm glad I stayed.

I get being a carer is hard, really bloody hard. Nobody thanks you for it, but that's not what it's about. It's about sticking by their side during the toughest part, and last part, of their life. And despite how she is now (medication, feeling like shit, and knowing you're dying can make people become angry/moody assholes), I'm certain she loves you more than you could ever imagine. I only knew how much my mum loved me after having a daughter of my own, but that was sadly too late for me to fully appreciate as my mum died just before I fell pregnant.

However, you do what you feel is best. Nobody can dictate to you how you should live your life. Just make sure you don't regret anything.

Can you get her sleeping tablets for night time?

justarandomusername
Your posts are so difficult to read, understand or follow.

Everyone has spent their time explaining how to get an assessment of needs and you casually mention your mum already has a social worker visiting every few weeks!!

A social worker that will be asking your mum what support she will accept and talking with you.

Hugely misleading of you

Three I didn't say she visited most of the time its a phone call and a phone call every weeks to somebody whose clearly confused asking them what they need and ignoring the person who does most of the work with her doesn't offer either mum or myself the practical help either of us need that's classic social work thinking you haven't a clue

RL impossible to stick it out any longer they've been giving her only days to live since January and she's still here and getting worse I can't even go out now as she is having more panic attacks even if I leave the room to do something she gets agitated then I can be up to see to her 5 or 6 times a night as bad as it sounds I feel resentful as I feel everything has been put on my shoulders and even after she goes it won't stop she has 8 siblings and 5 other sons who've done nothing to help but will suddenly appear with crocodile tears and try and get they're hands on everything they can there's also the fact others have made things more difficult than they've had to be for example one brother lying to my mother about having had cancer and going on about his own problems and upsetting her then another who I've asked for help as he stayed close by I told him how difficult things were at home to be told to wind my neck in and stop playing victim since January like I said her health has been getting worse I told this brother that and I was going to look into putting her in a hospice as I wasn't coping his response was he didn't want his mother ending up in care although he did nothing for her didn't even go to visit her in hospital after she had a stroke. Then there's the neighbour I've previously said about implying I'm trying to take my mother's house off her by asking me where the title deeds are asking mum suspiciously where her rings are (they were taking off as they kept coming off her fingers and put in a drawer in her room) and asking her who did that to you referring to a cut on her arm so there's that many issues no help just people making things more difficult than they have to be its got to stage when she's home as bad as it sounds I dread getting up

And three I apologise I did say her social worker sees her every few weeks I should have said speaks to her every few weeks mostly this is on phone and I find it hard to believe that anyone whose as confused as my mother gets is capable of making her own decisions its all very well somebody speaking to her for a few min and deciding if she can make these decisions but they don't see how she is 24 7