Grieving someone who’s still alive - my mum

[tomissmymum]

My mum has severe mental health issues, they thought she might have had early onset Alzheimer’s but consensus is probably not . Waiting on MRI results so that they can prove it is just mental health, but that’s taking ages .

My mum is utterly unrecognisable from her former self, she doesn’t communicate much with me . All the mum things you’d expect like hugs, asking how I am, giving me advice, they’re all gone and now she needs help dressing, using the toilet or making a bit of toast .

Her carers have said I need to back off completely because she expects me to do everything for her and they said I’m ‘killing her with kindness. I keep thinking if I do everything right, make her happy, she’ll be back to my mum again but nothing works and get so angry and hurt and lonely . I’m living with her and feel very childish at times because it’s that mummy/daughter relationship iyswim . I’ve been her carer though since I was 5, now 30 .

My dad couldn’t be less interested if he tried (25 odd years divorced) .

I’m so fed up with it all, I don’t know what to do anymore . Family were/are helping but they’ve got their own lives and we don’t often talk about feelings .

I’m seeing a MH person who said it’s like grieving for someone who’s living and said stuff about stages of grief but I feel like by saying that I’m being horrible to mum, who’s still very much alive thankfully - but not my mum anymore .

If it was dementia Gp said there would be help but because it’s mental health it’s a
nightmare getting any advice at all .

Where are you in this situation OP?

What are your hopes? Dreams? If you had a child is yours the life you would want them to have, taking care of you in the same way? I think you have done an incredible job for your Mum, you have devoted yourself to her, but it is time for you to shift the focus onto yourself. Learn who you are and what you want to be in life. It will involve a huge mindset shift and yes grief but it could open up a whole world to you. Btw people grieve people who are alive all the time when relationships change for one reason or another, you aren’t betraying anyone by grieving. Therapy would really really help you in this situation.

I would not be happy with "the consensus is probably not". Has she been referred to a memory clinic, had proper extensive testing and brain scans etc? I would want to be absolutely certain that there wasn't an organic, neurological cause before accepting that her condition is entirely due to her mental health.

I also don't like the sound of the advice you are getting from her carers. "Killing her with kindness" is a very insensitive and unhelpful thing to say. Is there a decent plan in place for her care, and are her needs being properly met?

And on the grief aspect - you have my total sympathy, it's so so hard. My beloved Dad has Alzheimers, so it's different, but seeing him lose little pieces of himself is soul-destroying and I also feel as though it's a long drawn-out bereavement. Make sure you are looking after yourself, as well

She’s had a fair bit of assessment yes, most recent was an MRI three weeks ago - GP said they don’t have the results, hospital said they do but they can’t tell me as it needs seen and signed off by a consultant - who’s been on holiday last three weeks. .

You feel in limbo all the time not knowing what’s coming next or what’s really going on . I suppose if it was serious someone would have said three weeks ago .

With care, she gets someone in 5 x a day and they’re talking about social support .

I’ve got myself in such a mess though that I’m scared to leave the house, I’m not doing anything much . I get dressed and showered, but nothing else . Don’t socialise as I’m scared to leave mum .

I don’t like the killing with kindness thing either, I’ve got a diagnosis of OCD so I’ve really rather latched onto that phrase and spend much of the day panicking that I’ve somehow caused all this . A few of mums carers are very good and one said to me to try to enable her to do it for herself, not do it for but when you’re tired at 11.30 at night and mum won’t dress herself it’s easier to just do it .

RE me, I’m studying for a career, I’m about theee quarters through but struggling hugely now to find the motivation to do it - I’ve left a 3000 word paper to this weekend that needs done for Tuesday, every time I think about uni I just feel sick again .

I’ve asked GP surgery 4 or 5 times last two weeks if someone could call me to chat but just told it’s not a medical problem so they can’t help .

It’s things like at dinner time I would desperately love my mum to tell me she’s going to cook dinner, or ask what I’d like, but she just sits and stares at me if I don’t prompt . All the things that made her my lovely mum are all gone .

It’s my sisters birthday next week and mum isn’t interested in that at all either, even if I took her to get her a card she wouldn’t be able to sign it .

Her carer came in on Wed who hadn’t seen mum for 3-4 years - job changes etc - and she was shocked and said she wouldn’t have known mum if she saw her, couldn’t believe it and said she didn’t think it was ‘just’ mental health . But I feel like because we have 5x daily care I should be grateful and just put up and shut up when inside I’m going between totally shut down to just wanting to scream .

If mum’s never going to get better then I need to deal with that, but if there’s a chance she can then do I need to keep fighting, I don’t know .

Please look up co-dependent relationships. This is what it sounds like to me, and indeed you seem to be depressed and/or declining MH as well op.
Why don't you go out anymore?
Do you still have friends?

You absolutely need to see the GP and tell them what you have told us. It sounds like you are going to need support/help/medication yourself to help you complete your studies. It is very important that you do, and you build some kind of independent life. Essential, because your mother won't always be here op, and you will need to have a life and network beyond her.

I think your carers seem to think your relationship with your mother is unhealthy, and although it was not expressed very well, please reflect as to whether this is healthy for either of you? Your mother has carers you can start going out for short bursts gradually increasing to longer periods so you gain independence and confidence. As a child carer you know nothing else (I understand because I was in the same position) but you owe it to yourself to have your own life, have fun - see the world, laugh with friends, enjoy a fulfilling career and security. You deserve all of this and more

You say you have been a carer for 25 years

why has she needed care?

I am sorry OP. I went through a phase at the end of my mothers life where I felt bereaved because she was 'gone'. In my case though, she did actually die about 4 months later. It was awful, I felt guilty, no body really sympathized because hey 'your mum is still alive', and I was exhausted. You are going to be seriously ill if you dont take a step back because this sounds like it has the potential to go on for a lot longer than my experience. I think your GP is really letting you down though - have you gone it to talk to someone about how you are being affected?

If is MH issues then you have potentially three more decades of this at the very least...

You have been her carer for 25 years. You are still young. You need to step back before you miss out on your own life. She has a care package, you need to take a step back. Hard as it is.

I really think you need to move out. She's got carers 5x a day, that's really good.

It sounds like you're heading the same way tbh, it's not healthy for either of you. You need to start going out. You can't fix her on your own, maybe nobody can change her. Don't ruin your life trying to.

I managed to get a GP to call me back, been trying to for a couple of weeks - turned out turning tears on whilst on phone to receptionist was the answer, GP phoned back within 6 minutes .

She said yes it’s a form of grief and said her only thoughts are that mum isn’t likely to get any better any time soon, if ever - said it might still prove to be early onset but whatever it is not much chance mum will be ‘mum’ again .

She said she would try to treat it as
would with any other bereavement - I don’t know how you do that, I’ve only ever lost my grandparents/etc who were all very very elderly when they died . Said stuff about going out for walks, going out during the day, trying to socialise, exercise, eating healthy .

Codependency has been mentioned before as has parentification and a phrase that always makes me cringe (emotional incest) .

GP did say (and it’s been said before) if I don’t pull out I’ll be same by 50. Mum’s only 57 but she’s got the life of someone so much older iyswim, she stopped working at all 17 years ago and never socialises . I don’t want to go the same way .

Re why did mum need care, she used to have non epileptic attacks, depression, anxiety, agoraphobia, etc - had to help with emotional stuff and practical things like taking her to hospital and doctors and things . She’s had various carers and support workers since before I was born, but 5x daily is the most she’s ever had so that’s positive if they can keep that going .

tomissmymum have you had therapy? Your whole focus here is on how to help you mum not how to help yourself. You aren’t able to help your mum really because essentially everything you do for her disempowers her from doing it herself and learning how to manage. Definitely working with a really good therapist might help you to see things differently.

Whatever her condition is, it’s ok for you to forge ahead and create a life for yourself.

If you’ve been her carer your whole life it will be so difficult to allow yourself to detach so it’s great you’re having the counselling.

as a PP asks, what are your hopes and dreams for your own life and what small steps can you start taking towards them?

I have but not specifically for this, was referred for trauma focused therapy a while ago and have had three sessions but we haven’t talked much about mum although I think we probably should . I’ve got another appointment on Tuesday so will ask her then .

Yes it feels like entire life is centred around mum . I don’t have many close friends, only one, and k never really go out without mum …fear of what will happen if I do and guilt . It feels like mum is my sole responsibility and I spend all my days worried I’m letting her down in some way .

RE goals for me, I’m not sure to be honest . It sounds silly but I’m not sure what I like and what I’d like my life to be like .

It does sound like a form of dementia to me. My mum has Alzheimers and she is like this. I wouldn't necessarily let them fob you off that it's all in her head.

Agree with olivia, look after yourself. Therapy is so helpful. Self compassion. Doing things on your own
Making yr own choices.

I began to feel better when my focus switched from i must get through to her to i must protect my peace

Yanbu at all. My mum was eventually diagnosed with early onset Alzheimer’s at the age of 57 after about 5 years of what we thought was strange behaviour and depression.
She died 12 years ago at the age of 67. I’ve grieved her every day since her diagnosis

I think that’s what her GP was trying to nudge me towards yesterday to be honest .

To be honest the diagnosis they’ve gave her, psuedo dementia, says online it only leads to true dementia eventually anyway .

it’s all just shit . Said to GP yesterday it can be OK for two or three days then it’s like I can’t breathe for feeling so overwhelmed and upset, I’m absolutely exhausted beyond belief and need a proper break .

I’m so sorry (and to everyone else with similar experiences, it’s just awful) . It’s so so incredibly hard . GP said I did the right thing by phoning her and crying down the phone for half an hour . My head’s in a bloody mess .

my friend’s parent has dementia too, she says she often feels the same way but her parents so much older and has had a lovely life (which doesn’t take away from her experience or grief at all) . My mums soent much of her life unhappy and in and out of psychiatric appointments and wards and stuff and it’s just shit .

I keep thinking of the things if she doesn’t get better she’ll miss .

and then part of me thinks I’d feel slightly relieved .

and then I go back to feeling guilty again .

I’ve got a therapy appointment on Tuesday so will ask her if we can discuss this a bit .

She did the oddest thing today, decided her mum was dead (her mum is very, very much still alive) and very confused when I explained her mum definitely isn’t dead at all . Even showed photos and no, no, ‘mum died years ago, I haven’t seen her for years and don’t know who that is’

Put her on the phone to her mum (poor gran!) who was able to calm her down a bit, but it was if she hadn’t seen or heard from her mum in ages - I phone her mum every day .

I wish I knew the answers to it all, I can’t imagine how frightening it must be to not know where your mum is, I don’t want my mum scared or upset . I keep worrying I’m doing things wrong or not doing the right thing somehow .

I wouldn't think a mental health issue such as they're referring to would cause her to not recognise anyone and be totally unable to administer her own self care unless something unspeakably traumatic happened to her and she was pretty much catatonic. I feel you're being fobbed off. There are many diseases that present with loss of function, there are plenty of people who were told their declining parent or spouse didn't have dementia only to have that backtracked on. There are functional neurological disorders that have completely real and uncontrollable symptoms but that doctors can't see on a scan. They happen on a cellular level and we are only just starting to properly look and learn why. Those too can present with brain fog, confusion, loss of motor function etc.

My heart goes out to you. I full empathize with you when you say "You're grieving for someone who is still here, but In a way they're not still here.
I had the same thing with my mum. I know its clique to say it but She lit up any room she went into. By the time she passed she was a completely different person. I suppose (and not to frighten or upset one) its like a ghost in reverse when you think aboout it.
When a person loses their personality in life the body has out lived the spirit However with a,ghost the personality and spirit out lives the body.

Do they think that her behaviour is attention seeking due to mental health issues? An effort to control you, gain attention, keep you with her, have you do everything for her etc?

I’ve seen patients who have put themselves into wheelchairs claiming they can’t walk, wear neck braces claiming they can’t move their heads, are carried everywhere by their partners, pretend to faint multiple times a day (it’s very easy for HCPs to tell when someone is pretending to faint), won’t get out of bed, have literally disabled themselves and got their children or partners being full time carers and there’s nothing physically wrong with them, it’s all mental health problems.

So I can absolutely believe that OP’s mums symptoms may be down to mental health problems rather than dementia.

It’s also very interesting that you’re almost at the end of your studies for a career that would presumably make you less available for her and suddenly your mum now can’t be left alone….

Oh OP I feel for you so much. 😭 This sounds like such a devastating situation.
I'm so sorry. I hope you can start to focus on yourself and what you both need and want. If I was your mum that is DEFINITELY what I would want for you, no matter what was happening for me.

My mum has advanced Altzheimers and has been in a care home since last summer. Some of what you say sounds like her. It's devastating and deeply sad, but I'm 41 and she's 76, it must be so so much harder at such young ages for you both. Sending you strength and my very best wishes.