How to navigate long term sick health review for stress from family illness as I’m caring for 76yr old mum due to pancreatic cancer?

I am looking for some advice around a Long Term Sickness Health Review Meeting I am due to have.

I have been absent from work for stress due to family illness since 11/07/2023 as my mum was diagnosed with pancreatic cancer.

On 07/07/2023 we met with the oncologist after my mum was in hospital for 2 weeks who explained that the tumour was considered ‘borderline resectable’ and that standard procedure would be to try and shrink the tumour away from blood vessels using neoadjuvant chemotherapy then perform surgery.

However, he explained that due to how weak she is (weighing 42kg at this point) surgery would not be an option and further explained that the chemotherapy used in these situations was highly aggressive and she may not be able to withstand it.

During this meeting she asked how long her life expectancy was and we were told 12 months.

She was discharged from hospital on 09/07. On 10/07 I attempted to work from home but found myself unable to concentrate on tasks.

My mother also needed a lot of care as she was unable to do a lot of things for herself, was unsteady walking and was suffering from nausea and vomiting.

On 11/07 I informed my manager that I found myself unable to work the previous day. I self certed from then to 17/07. After that I have had 3 fit notes one for 2 weeks,1 for a month and currently for 2 months until 30/10

On 24/08 we attended an oncologist appointment where they explained that she would be allowed to proceed with a neoadjuvant chemotherapy called Folfirinox to begin on 14/09 but would start at 50% strength due to her physical state.

One of the big stressors in caring for her is because Pancreatic cancer results in lowered appetite and stops the body producing the enzymes required to process proteins it results in rapid weight loss. Due to this she is required to have enzyme replacement therapy where enzyme tablets are taken with any foods containing protein which she forgets and she needs to be encouraged constantly to eat. She needs to put on weight to help get her through any treatment.

My recent note was that during this period, as she will have gone through 4 cycles of chemo, we will have been able to get some of the side effects under control and with the help of our assigned ‘Care Navigator’ explore the support options available to me.

However, I commute to work quite a distance and though it is 40 miles away it takes on average 1hr 30mins and the route is notorious for problems causing major travel time increases. Some work for my role may be undertaken from home, but most requires me to be on site.

Her chemotherapy cycles are 14 days requiring 5hrs at the hospital and then a return to home with a pump for 46hrs every two weeks. Side effects are expected to be at their worst for 4-5 days after treatment and get more intense as the number of treatments increases. She will then also become extremely at risk for infections 7 days after the treatment where a cold could potentially kill her due to lowering of white blood cells. As I am now staying with my mum to care for her, me mixing with people will result in putting her at extreme risk.

My mothers mental state has also had a large impact on the amount of care she requires and the strain on me. Previous to her cancer diagnosis, on 09/02 I had taken her to the doctor to assess for dementia as she had a family history and was displaying signs of onset such as short term memory loss, confusion, forgetting details and mood swings. During the appointment a mini-cognitive test was performed which she scored 2 out of 5 resulting in a referral for dementia assessment. The referral for this did take a long time to move forward and an appointment for a memory assessment was only arranged recently (09/09). At the assessment the Nurse practitioner decided that due to her cancer diagnosis it would not be appropriate to proceed on the dementia assessment pathway.

Still, her mental condition, which seems to be compounded by the diagnosis, has resulted in difficulties such as needing to be constantly reminded of why she needs enzyme tablets and how to take them, which is essential for weight gain. Her decreased appetite means I need to beg and bargain with her in regards to food. I also find myself explaining daily what her diagnosis is and what it means. Some days I can explain the extent of the impact of her diagnosis, other days I need to take a softer approach. She is unable to tell people who check in on her what is happening so I find myself repeatedly having to talk through something which is very painful for me with a lot of different people, many of whom I don’t really know.

It has also affected her mental health and she relies on me for emotional support. She asks me why this has happened to her, what she’s done wrong etc. We lost my dad 4 years ago to a sudden heart attack which has impacted both of us hugely. Trying to support her emotionally is obviously a huge strain too.

Also, her physical state is declining and seems to have declined rapidly over the past few weeks. She is extremely unsteady on her feet and most of the time unable to walk without support. Just before and after her diagnosis she only required this sometimes. Her fatigue has increased whereby she is tired and weak most of the day every day now and needs me to do most tasks for her everyday even down to making a cup of coffee.

When her chemotherapy starts her physical and mental state will obviously become even worse and there will be multiple side effects to try and control.

I am looking for some support and advice on how to navigate my Long Term Sickness Health Review Meeting to ensure the issues are taken in to consideration seriously and to be clear on where I stand.

I’m at a loss on what I can suggest when I get asked what reasonable adjustments I would need to enable me to return to work and how they can support me.