Friends, Family & Carers Forum

[Former-Member]

Things are coming to a head with my family. My mum has always suffered Anxiety / Depression / Severe Mood Swings (?Sz/Bipolar - secretive). Now what she fears has come upon her - terminal cancer on top. Shws not coping, and also dads carer (mobility issues and dementia stage 2). Mum has passed her 2yr medical prognosis date with terminal cancer and fought hard to hold independence.

Her MI is sooooooo difficult to work with. Sooo ambivolent about everything, anxious, can't make decisions, argumentative, suspicious, shuts down, cries, abuses, withdraws... Sucks trying to help. Dads care is failing too, she resents all the in home help I've activated with him this last few years I'm seen as the enemy for doing that, even though she can't. Last week dad actually asked me to come help "looks like mums having to go into hospital"

They never ask

Then I get this tx from mum this morning. "Feel crook k#####(me) hows your flu today if you can come down what form of travel you choose and how can you look after the birds they are a concern dont feel good today at all but the day is young yet might pick up"

I have respected mums fierce need for privacy but today I rang palliative care to see what's happening for her? They got her mix d up with another 'same name' patient. Then turns out mum has never beenbreferred to Community Palliative Care (which is why they didn't know her), but had her last Admission Notes referring her to Palliative Care Dr, she's been doing those visits but talks about dad not herself. Next visit ?12th.

Mum has lost 25% body weight, is weak. After talking with her and x3 nurses today (like hours), clarifying wrong contact details and complex family matters, I feel shell shot!

Honestly thought these things were in hand.

I'm gonna have to go down, but OK his time begrudgingly. I live 12hrs away, I have a sister & 3 bothers within 5 - 1hr away. They can't handle mums MI - she has legal rights++ but don't know what she's doing now dad can't take charge.

The palliative care cimmunity nurse can't act without that referral from the hospital Dr, so shell look at that and then ring mum... All maybies of cause. My heads swimming with it all, any wonder mum just throws her hands in the air saying "they don't care, I'm too old, they just want me to die"... "And you lot are selfish and just want to put me inva nursing home and forget about me, and you all care about dad more than me..." Then she crack a joke about something totally related, say "don't wanna talk anymore..."

OMG!!! my cPTSD & cGrief trigger alerts are all firing. Feel resentful. Want to go to bed 'till it goes away.

My son even said to me this morning "mum you know people have totally cut off parents for doing far less than they have done to you!" Suggesting I abandon them. How can I do that and stand before God (and myself) in peace? This is so hard!

Help!

[Appleblossom]

Sounds like hell @Former-Member  Your family is at the extreme of difficult.  I did many wonderful things for my mother that she benefited from and flourished and I can look her and god in the eye for what went down.  You have to decide where your giving and your limits lie.

All I can think of is make a list and try to be patient but detached and get Community/Council down there involved, if you can do it from your own home by phone.  In some ways having outsiders involved gives you some protection, too bad about mum's need for secrecy.If she is making things worse for herself that is also a consequence she has to live or die with.  I dont mean to be heartless.  My brother took his situation on the chin and did it HIS WAY without much care but went into hospital last 3 weeks. I love him and am proud of him for that.

My gf is having issues going into nursing home.  Most people will resist until its necessary.  I try and give her the out of still doing a good quality choir to keep her engaged.  She was a music teacher and choir friend, but issues arise between her carer daughter's needs and hers.  It is the way with humans.  Pray about it for a couple of days and find a co mpromise path that works for you. You cant do it all.  Cancer and palliative care is too complex anyway.  Nurse or not. There are always updates and changes in system and protection in being public. Your mother miught restrain herself from bad behaviour in fron of others.

I would never cut off family, but find a way to work with them, with self protection and keep some distance, even if you do go down.

[Former-Member]

Thanks so much for your reply @Appleblossom, I know you understand and the issues. My heart is racing so just boot 'Heartbeat' on (British Series) which sooths me, love the accent, country, stories and music. Company really. Trying to breathe deep too while typing. Have to break from it all emotionally somehow. Still waiting for the CNS Palliative Comm Nurse to ring me back. Don't wanna miss that call. Beingboeganised with all these different contacts andvprocesses for mum will require its own file, lol Which is typically more complex & problematic than dads needs. Idealy I think mum and dad want home until that last terminal hospital visit like your poor brother. But the need help at home to transition to that. Someone in the house 24/7 No services provide that. Accept maybe this council thing (but mum won't let strangers stay there). I have the time, just bugs me. I know I should 'require more of myself' and trust God to go before me, to strengthen me. And 'not fear or be dismayed'... ... To look after myself better (gied up mt loins...) The Community Nurse has asked me to try come down for Cancer Care Apt with mum next week. She agrees they need 24/7 help the community can't provide.
Think Victoria is better with this stuff than NSW.

Anyway, ta for reply, was waiting. Feeling really worked up. House in a shemozzle, a sale in the wind. My son did s struggling andvi'm still on ABs/prednisone for Bronchitis/Asthma. Promised Volunteer Boss I'll be a here Saturday (as she's away & knows I'm sick) so do have a couple of days to stall them. Wanted to see my son first. He's been struggling too. Maybe tomorrow 🙂 But he's said he doesn't want my cough, hmm All too hard 💜💕

[Appleblossom]

Remember to live your life forward. Your son, and your job, home and self are higher priority. Fix the parent stuff lower on the list.  How do we really know what God wants of us.  Maybe he wants you in your job too.

I am so glad people are getting involved. You deserve not to have to carry it alone.

In a way my mother made it easier with her decision to spend her last 9 months in palliative care.  I did trips helping her choose and move stuff to personalise her space and kept visiting. and spent a few nights over.  It probably helped all of us that the difficult family dynamics were mediated through the nursing home structures and personalities.  It helped me with perspective and not getting too intense with mother.  Mainly we did music on our visits and the whole home loved that so she was quite a celebrity to the end. She also had better care with people who knew all the tips for caring for someone.  With my neck and back I would have just wrecked myself and that would have just been doing a martyr act. I did not want my son to see more suffering and he came a few times but had complete control about how often and how long he went.

[Former-Member]

Thanks @Appleblossom, it does help to hear other people's experiences. Did your mum have MI? We all think mum and dad would be better off in care (preferably together), but they don't want that. Poor mum wants someone to save her but she also wants control (with limited capacity & denial grr!)

Loved hearing how you played piano with your mum in care. They'd all love that. My mum would be jealous I was getting the attention rather than be proud but ya never know. I'm guessing you and ya mum performed together? Singing too? Wow! What a memory. ☺
I've always been so scared of my mum right up to my last visit there Jan/Feb. She got right up in my face one day, waving the finger, pursed lips, glaring angrily, about something she misinterpreted - my heart started raving but self awareness work kept me group died and for the first time I realised "she can't hurt me anymore" Maybe having k st 25% of her weight (looks frail) helped,. Like a dog not getting the fear response - she backed off hands in the air anyway and returned to fussing about. ALL BLUFF! i remember thinking. Probably bluff all my life (um, no, have physical & emotional scars from her). Its sad, she's not well. Wish she got treatment for MI, refused, scared they'll lock her up forever (a very real fear which I think mugt have something to do with inherited cell memory concept - a past trauma, as proved in children of survivors of the Holicost. What can we do when there's no insight?

Poor mum.

Finally getting somewhere, CNC returned my call today and confirmed there is an apt with Cancer Care Clinic 12th (wants me to come for it) and she has the referral linking mum in with Community Nursing Care so they can start seeing her at home (if she let's them in the door) and shell ring mum tomorrow. Thanked her profusely. Its so nicevwhen you find a health care worker who understands and joins all the dots.
I also got the medical centre f/up her routine blood count (she's complaining of severe weakness again - blood loss) so they'll call her in. She'll like that (depending on her mood of cause).

Helps / relieves my anxiety to know what's going on and not feeling so out of the loop / helpless. All covert though so as not to upset her.

Think my asthma medication causing shakes. Resting with fav dvd and having resolved some issues is helping.

Work just asked me to do a couple extra hours tomorrow, said yes. 😨 felling stressed. Working on mindfulness meditations. Hearts pounding again thinking on it all.

Living closer would be better, my own place. I have 2potential buyers viewing this w'end. Would need to come back to close that chapter, maybe afford a small caravan. Its all a bit frightening, but my gut feeling is - its short lived, they'll both be gone soon (inside a year or two). Feel like angel of death, no, its part of life, to bury ones parents. I guess.

Its great that you've walked this path and here offering your experience. Thank you 💜💕

[Appleblossom]

You said it @Former-Memberit is part of life to bury your parents.  That is part of the rhthym of life.  I dont think you will feel the same sort of grief for them than for your daughter so try and not conflate fear of grief with the actual experience.

My mother was diagnosed with schizophrenia when I was 6 but she came and got me 2 years later.  She was very formal and distant, did not function well socially or with peers or family of origin or husband at all. She lived extremely isolated for decades. In those things she is a classic case of Sz.  However after 50 she blossomed and was a "successful" piano teacher" (bigger studio than I could run with my neck)  She used money to control my children, rather than the bluster and YES the bluffing of your mother.SO in some ways I am luckier, if that matters  I believe you about the scars as your mum's behaviour is very out of whack, but she is now drawing out your sense of pathos with her frailty.  Reach out and make palliative care memories that suit you, but dont lose yourself in the process.  Its ok to focus on the living.

I love that I held my mother's hand for a few nights while she was still compos and we could cuddle from 2 separate beds.   The period after that will be a fixed memory for me seeing her in pain and far from being able to contact anyone, but it was also peaceful and dignified.  She really wanted dignity after all the shame of early years and my sibling's deaths and she had that.  So that was good, even though it was death. She was 82. She and brother talked cancer treatments but his treatment protocol and approach was too aggressive. He lasted 15 months after she passed. We all have to die and that they get a little say in the matter helps, but I am afraid your mum might have to face limits to her control AND THAT IS NOT YOUR FAULT OR RESPONSIBILITY. Not to punish or blame her but to let her get the help she needs.

My gf tries out all the nursing homes as respite so that gives her a sense of control about which one she chooses when she cant stay home.

Give your mum some options if possible, it might help her anxiety, which has a real source. 

[Former-Member]

That's informative helpful @Appleblossom, you sure have been through it, and seem to share that conviction to see them die with dignity and grace,, even though they damaged us. I'm just trying to process it all, the unknown.

BRO just sent this msg:
"Hey Sis just an update on what's going on I'm afraid mum's become so week she needs a rest and treatment again but she is weak from it all. They got a new fence today it's very tall and mum doesn't like it much. I think Dad was crying out for a lot more attention the other day. But I'm sick of hearing that I do nothing and I don't keep records I do what I can when asked and I leave. It's hard in a way. Anyway God's will be done"
ME: "Tried to ring you back - keeps going to voicemail, what do u mean "mum needs a rest and treatment again" and what was Dad "crying out for help with" ? I'll try come down next week.
BRO: Next week that will be great are you going to fly down you would be better off to fly down as for Dad love's attention and that's what he's crying out for ("probably") feels like his been forgotten. Mum's weak having trouble carrying her handbag and she's emptied it out. Needs to rest as I haven't lifted her bed yet But I found four by two timber witch should be long enough. It will be great to see you and your always a help. have to clean up the back room somehow hahaha.. Fly down okay"

Sounds lonely doesn't he? Just a horrible mess. How do ya turn ya back on family? 

[Former-Member]

@Former-Member ...

[Former-Member]

Hi @Former-Member, how are you? Is a bit like that I guess - 'don't know what to say' lol

Arranged Centrelink advanced payment loan yesterday, for the trip. I'll drive as like having my own wheels - they always say 'fly down' re anxiety I'll crash.

Let me see - being there can't be too hard: cook, clean, transport, company, health apts, compassion. At least I'll be useful to someone. Quick visit this time really just to assess things, show i care... Coming back to wrap things up (with selling house) could be hard if they become dependent on me. Would prefer to have it sorted first.

Finish my antibiotics today. Have a half shift at the shop today & Saturday but gonna have to give notice next week (for an indefinite break) which will go down like a lead balloon.

I know I'm not a full quid myself, maybe getting it all wrong (if its possible to mess my life up more), but need to move on, away from here, the trauma past, unincumbered. Maybe it is 'running away' but its to help someone (my life calling) and there's worse coping mechanisms.

I don't know what I'm asking of you, sharing here. Just makes me less alone I guess. Thanks for listening. xox

[Former-Member]

@Former-Member
Here and listening ...
Darcy