Thread by @CarenFrosch

In May my wonderful mother and amazing Oma to my son died. A long thread about, her, #mentalhealth #rheumatoidarthritis #cancer #NHS #carehomes #covid19 1/43

I couldn’t have asked for a better mother, she embodied one of her favourite poems ‘Why god made friends’ 2/43

And a former neighbour, about 50 years younger than her, captured her so beautifully when she wrote this 3/43

The last 18 months of her life were the hardest for her and for us caring for her. But let me go back a bit to 2013 when she suffered a severe mental health breakdown that resulted in her being hospitalised for several months – diagnosis psychotic depression 4/43

We’d thought for many years that she had mild depression and it’s not surprising given the trauma she'd experienced in her life, but she rejected all our attempts and suggestions for her to seek help. Truth is it didn’t fit with her image of herself: strong and able to cope 5/43

As an aside, a degree and PhD in Psychology, that do not specialise in clinical psychology, do not prepare you for the reality of anxiety and depression. Back in 2013 I was quite overwhelmed with it and it was a very steep learning curve 6/43

Six months of illness and she was getting back on her feet. 18 months later she moved into sheltered accommodation and she was so happy with all the new friends she made and the community she had gained, the happiest she’d been in a long while 7/43

She never received psychological therapy, just medication. Not sure to what extent it was offered at hospital and she rejected it, but I suspect #NHS resources were too scarce. She complained about vivid dreams her medication gave her and her GP agreed to stop it in ~2017 8/43

Fast forward to October 2018, she was very anxious about journey for her holiday, but I thought she’d be fine once she gets there – she wasn’t! Anxiety and depression returned in full force and she came back early, I flew to meet her at Dublin airport for the 8 hour layover 9/43

I got straight on to crisis team in Leeds, who were great and made a referral to Leicester and she got a visit very quickly. Had I not, we would have had to start from scratch by going to GP in the first instance and wait. Lesson 1 in importance of having an advocate 10/43

For next 6 weeks I tried so hard to help her, at times not leaving her side all day, but still she continued to deteriorate, much faster than first time around. The anxiety and depression were crippling. Trying to help was the hardest I’d ever done 11/43

She also had rheumatoid arthritis, acquired a year after I was born. Dealing with the medication and care for this and her other co-morbidities were challenging, especially looking out for potential side effects. There’s so much to being a carer! 12/43

Hospital admission for her mental health was on the cards and I was grateful for the opportunity to take her to Leeds for her two-monthly rheumatoid arthritis treatment as I was worried about her arthritis deteriorating and physical pain compounding her mental anguish 13/43

Turns out you can’t have it if you are on antibiotics, also GP should have told me to stop her methotrexate! But she’d also lost well over a stone since her last appointment, so couldn’t have had it for that reason. Staff were shocked at her deterioration. Sad, wasted trip 14/43

She was admitted to psychiatric ward few days before Christmas – it was grim! Christmas is also a bad time to get admitted, couldn’t speak to consultant for a few weeks. She was there until early May and had at least three different consultants. Where’s continuity of care? 15/43

Could she have dementia? Turns out it’s hard to test for it when you’re super anxious, so we never got an answer to that question. I asked about RA treatment in January so a referral was made to local rheumatology clinic. Appointment not until May! THIS WOMAN IS IN PAIN! 16/43

Discharge from hospital in May, we’re all full of hope. Rheumatologist was brilliant, but has to treat her as new patient so her regular treatment, which she has now been without for 8 months will be delayed several more months. But at least she got a steroid injection. 17/43

In June we thought we might be able to slowly transition her home and to independent living, though the anxiety was still pretty strong. First trial trip home went well. Second one in July had to be aborted, she was too anxious and had started being aphasic. Dementia? 18/43

Could it be UTI, delirium? Then a fall at the top of the stairs, needed ambulance to get her up safely. Concern about her vitals, so call another ambulance if any change. Second ambulance blue lighted her – suspected sepsis 19/43

No sepsis, but terrible blood: low red, white & platelets and hypercalcaemia, but what’s causing it? Deterioration in hospital was rapid. Am I losing my mother? Full body scan revealed enlarged lymph nodes and spleen – probably lymphoma. Biopsy next… 20/43

Biopsy was inconclusive! Lengthy discussion with haematologist about next step. Recorded it so my brother, who lives thousands of miles away, can be involved in decision. She had no capacity to decide anything herself at this point. 21/43

Chemo could kill her, steroids make her psychotic - she wouldn’t want it --> palliative is the way to go, make her last weeks or months as comfortable as possible. It might not be long at all. My brother flew over early (Cornwall holiday for us all cancelled) 22/43

After several weeks on acute frailty unit move to Nursing home (NHS assessment). I’d cleaned in care home in Germany as a teenager, but it didn’t prepare me for this! To make matters worse, the fog of her delirium had started to lift, her first words ‘What have you done!’ 23/43

Most of the staff were lovely. What an incredible job they do in this world hidden away from us. So many romantic ideas of ageing quashed. Not everyone is like your grandma who worked as a barmaid into her eighties. 24/44

She wasn’t unwell enough to qualify for NHS funding and should be somewhere where she can be more sociable with residents. A whole new world of how care home living is funded opens up to me. She only had a modest pension and no savings. 25/44

Found a really lovely, homely place, close to where I live so when things go downhill I can be there quickly. But even with max funding from Social Services, most of her pension went towards her care and we had to pay £1000/month. Old age care is expensive! 26/44

Delirium had fully lifted & she now knew she's dying. So much anxiety, but mental health support had been minimal, nothing in hospital, 1 visit in Nursing Home from different team & now had to move to a third team, no link up between teams. She wants to be dead, help her! 27/44

A year had passed since last infusion for rheumatoid arthritis & lymphoma meant it was no longer an option. Consultant prescribed steroids to help with pain, but over Xmas we were concerned they were making her psychotic. GP can’t do anything as still waiting for letter 28/44

So I chase rheumatology for letter and to get the steroids stopped. Lesson 100 in importance of having someone advocating for you. Why are the different NHS services not linking up and communicating with each other? Where is the mental health support? SHE’S SUFFERING! 29/44

At end of January she’s the best she’s been in a long time. Were they wrong with the lymphoma diagnosis? Maybe she’s ok. February, she’s suddenly really confused. UTI? Hypercalcaemia back? Can we get a blood test, one that checks for calcium? 30/44

Rheumatology appointment, finally a blood test for calcium & a plan to help with her arthritis, the codeine she’s been taking is all wrong, was it causing confusion or is it an arthritis flare up? Why do the different specialisms not talk to each other? 31/44

Covid 19 is being taken seriously, care home closes doors to all visitors. I take child out of school a week before school closure as can’t risk any of us getting this, I need to be able to see her when she deteriorates. School still calls it unauthorised absence 32/44

Care home allows me to take her to hospital for steroid injection – what a relief. I wheel her in and out as quickly as I can, don’t let her catch the virus! Pick up medication, possible side effect raised temperature and cough! You’re kidding. 33/44

Four days after hospital visit she is sent into isolation with cough and raised temperature. SHIT! Her room is on first floor, she’s confused and useless on the phone, but manages a wave from the window. Eventually gets tested and result is negative. Phew! 34/44

She’s allowed back into communal areas downstairs, I go see her at the window. She’s still incredibly confused. A day later it’s decided she has to go back in isolation because she’s still coughing and temperature fluctuates. Stable door and horse comes to mind 35/44

She’s been in isolation 4 weeks, she’s seriously deteriorating, loss of mobility, no 2nd Covid test. The serenity poem comes to mind, she liked it. This virus is beyond our control. What can I do? She needs me, I desperately want to touch her and tell her she’s not alone. 36/44

We question why she’s still in isolation as symptoms are also consistent with lymphoma. A day later she’s released from isolation. Again the power of advocacy, how many suffer because no one (dares) speak up? I can only visit through window, but it’s something 37/44

Her deterioration is immense! She’s not seen a doctor for weeks. She’s a sociable person this isolation has taken a serious toll. Will she bounce back or is this it? I’m in denial, my brother isn’t. 38/44

Four days after leaving isolation a junior carer is worried about her and calls an ambulance. She’s at end of life! She has DNR and we have advance care plan in place (managed to arrange power of attorney last September). Don’t want her to die at hospital 39/44

Paramedic paves way for my access. Forever grateful to the carer who called ambulance and paramedic who spoke to care home manager. I am able to spend her last week by her side and frequently skype with my brother. I touch her as she takes her last breath. I’m so lucky! 40/44

In her final week she mostly slept and when awake wasn’t coherent, but one day she sang ‘You are my sunshine’ to me and told me she’s lucky and she loves me. I gave her my all and I know she knows that. 41/44

So how do we do a funeral when the most important people can’t be there? My brother is thousands of miles away and not able to travel. She has friends in lots of countries. A cremation with 10 people will be grim and how do you decide who can come? 42/44

None of us went to the cremation, instead we invited friends and family to light candles and listen to music she loved. We ‘sent a wave of love’ her way. 43/44

She would have been 80 in June, we arranged an online celebration, an Ode to Friendship, once in German and once in English. Many people who came would not have been able to attend her funeral. Technical hiccups aside, it was lovely. My son said he enjoyed it! #Parentwin 44/44