The Intolerable Stress of being an Unpaid Carer.

The 2021 Census of disabled people revealed yesterday that 5 million children and adults carry out some form of unpaid care work in England and Wales. Of those 1.5 million of them are doing it for more than 50 hours a week and many are struggling. Meanwhile, there are 165,000 vacant adult social care posts in England alone. (As of March 2022)

Below is Lynda’s story, her other half Michal has cared for her for 7 years without a break and can no longer cope.

Lynda has a spinal cord injury following a road accident in 2004 which has left her paralysed in both the upper and lower body and she is fully dependent on the care she receives 24/7. Such are her complex care needs Lynda would end up in A&E without it.

When she couldn’t access the care she needed her partner Michal devotedly supplied 24/7 care to her, but the stress on him has become intolerable. As Lynda’s full-time carer, Michal has not had a single day off work for the past seven years. It takes him around three – four hours just to get Lynda ready for the day, which includes carrying her from bed to shower chair and undertaking her bowel management routine.

“My partner can no longer cope. He is going to have a breakdown if I don’t do something, so I have looked at care outside. My mum is sick, and I don’t have extended family close by, but he can’t manage anymore mentally. I can’t go without care for one day as If my catheter bag isn’t emptied, I suffer from something called autonomic dysreflexia which could be fatal.”

Lynda is struggling to find anyone who can meet her care requirements and has even considered taking her own life because of it.

“I need qualified carers or life isn’t worth living. I know I should stay alive and fight it but how can you fight it if you don’t have anything to fight with?”

Every care agency she has contacted has told Lynda a similar story; that they’re short on carers and cannot take on any new assignments, provide respite cover or offer regular care. They say it’s because they can’t recruit enough carers.

For Lynda the stress of finding appropriate care has become overwhelming: “It keeps me awake at night and I have to rely on sleeping pills which I have been on for three years. How am I supposed to live this life when I can’t afford to get the care I need? People don’t realise how hard it is to access decent care and the danger if you don’t receive any help.”

Spinal Injuries Association supports many like Lynda in their battle to access the care they need.

Nik Hartley OBE, CEO said:

“Spinal cord injured people have expressed particular concern around the turnover of carers and the quality of the care provided with the constant fear of being left without life-sustaining care leaving many desperate. SCI people know better than anyone the urgency of the situation, with many depending on carers to stay alive. Persistent under funding of the care sector underlies almost all of the workforce problems in social care and that higher pay is a prerequisite to attract and retain social care workers.“

NOTE: DUE to the stress on Lynda and her partner they have separated temporarily but are now trying again to make things work in the hope that Lynda can find additional support to help her partner to cope. Lynda is now receiving psychological support and Spinal Injuries Association continues to support her.

Further Background:

Michal and Lynda have been together for ten years, and he devotedly provides 24/7 care for his love.  Because Lynda is very vulnerable, and thanks to her complex injuries, her daily care routine is complicated and time-consuming.

Michal said:

‘Lynda can’t be left alone as she’s so vulnerable. She can’t spit, cough, vomit or blow her nose on her own, so she is extremely fragile and I can’t leave her alone.

Michal gave up his job in the hotel industry to become Lynda’s carer, and has firm views on the quality of care available for many SCI people.

‘Paralysed people who have support from society, they can achieve.  Lynda’s story is extreme because she is a C5 complete tetraplegic.  For people like her, with her complex injury, they are fully dependent on their carer.

And I’ve seen that the quality of care out there is sometimes so poor it’s actually very dangerous.  Some of the care provision agencies are very bad, but the clients are too scared to complain.  They’re poor and they’re dangerous. It’s a proper nursing job requiring skill, but they can send just about anyone to live with you. So, here I am.’

Michal’s typical day looks like this:

8am start.

It takes me around 3 – 4 hours to get Lynda ready for the day.

Empty her night bag.

Carry her from bed to shower chair.

Do her bowel management routine, including massage, stimulation, evacuation (takes 45 mins – 1 hour)

Shower and wash her hair.

Dry hair and body

Moisturise her whole body (people with SCI have very fragile skin and are prone to pressure ulcers)

Dress her top half.

Give her medication.

Change the night bag for day bag.

Clean her ears and blow her nose.

Transfer her to bed.

Dress her lower half.

Apply makeup.

Do leg stretching exercises.

Transfer from bed to wheelchair

Set up Lynda’s tech, including earphones, iPad, touch screen phone.

Put on gloves.

This takes around 3.5 hours, and then Lynda is ready for her day.

Prepare lunch. Michal makes only home-made food for he and Lynda.

Help feed Lynda. (She has splints on both gloves to help her hold cutlery, but needs lots of help.)

Wash up lunch, tidy up bedroom and bathroom.

Lynda sometimes goes out to meet friends, and until recently worked at Guide Dogs on their care hotline, and also as a receptionist at her local community centre. Michal drives her to and from all her work, social and medical appointments.

Throughout the day, give Lynda drinks (around 6 litres per day) and change her bag around 8 times per day

Prepare dinner, help feed Lynda, tidy up kitchen

Every other evening, Lynda uses a standing frame for an hour, which helps with her bones, digestion and circulation.  Michal transfers her to and from the frame.

10pm Bedtime routine takes around 2.5 hours.

Remove make up.

Wash face, brush her teeth.

Remove gloves.

Massage her hands and fingers (they are painful and get swollen)

Empty her bag.

Carry to bedroom.

Blow her nose.

Dress in nightie

Moisturise face, brush hair.

Give a massage for pain relief, takes 45mins.

Upper body stretches.

Transfer to bed

Connect the night bag.

Massage her right arm as it’s often very painful.

Put her carefully into a sleeping position. Must be specific position because she gets pain at night and can’t sleep, which ruins the next day.