Struggling

[MCmummy1315]

Hi, I am looking for some advice. I am in a difficult situation. I am next of kin to my elderly uncle who is 81. He’s also my Godfather and I am extremely close to him. More so than my sibling and my mum who is his sister. I have two aunts who live abroad too. My mum is 77 and doesn’t keep well so I am in the most part his carer.

A few years ago he was diagnosed with rectal cancer, got a huge operation but given his fitness ( he was an incredibly fit and bear like strong man in his youth) they thought he was strong enough. Had a temporary stoma bag and managed this right up to the reversal in March. He had roughly 6 weeks of feeling good and started to become unwell. Long story short. After a long period of fighting with doctors, nurses etc he was diagnosed with methesolioma. Which is a lung cancer due to exposure to working with asbestos when he was 16/17.

Since his appointments regarding immutherapy to prolong his life he has been unwell and in pain. This all came to a head when a few weeks ago he was bed bound and had to be taken to hospital as he had an impacted bowel. He thought it was the end as did I. It was a traumatic experience. He recovered well and got out of hospital with a care plan in place. A carer in for breakfast, dinner and a tuck in a night. However he really disliked the tuck in and we cancelled it. He then phoned me one night to say he was dizzy and unable to get upstairs. I like 15-20 mins from him, luckily my husband was near and helped him. Between myself, my husband and my brother we have been up to see him and put on his coal fire each night for the past 10 days. He does not have central heating. We are trying to get it in along with a stairlift.

We are all struggling, I had the doctor up to speak to him about medication. Tramadol seems to be making him bed bound and groggy. Now changed to oral morphine with paracetamol. The most upsetting thing is for me he’s not the gentle person he was. Often snappy and extremely frustrated. I also work FT and have a 6 and 9 year old. Feeling exhausted and not sure what other support is out there? Would it be expected that I go off work to care for him?

Apologies for depressing post on NYE.

I think you need to reinstate the final carer of the day, as you can't have that pressure continually.

You have to keep going with your life - you're a Mum and an employee - but I know how tough it is.

I'm sure your Uncle's change in character is due to the illness or drugs.

Have you spoken to Social Care to find out what additional help could be provided for him? Do you know his prognosis? If this is something that could go on for years, you definitely need to get more help in place. If the likelihood is that the future is more limited, you need to think about what sacrifices (if any) you need/want to make short-term.

Would it be expected that I go off work to care for him? No, there is no responsibility on you to do anything.

That said, Social Services are overstretched and will be delighted to leave everything to you. So you have to state your boundaries very clearly, and remember to set them at something you can keep up every day of the year, with no cover for illness or holidays.

In the short term, worth applying for attendance allowance. It’s not means tested, and it could be used to buy extra care. Get AgeUK to help with the form - there’s jargon to get used to, and it’s difficult to remember all his needs when you and he have been so used to getting around them

Longer term, is he likely to improve or is this a step on a long term decline? Will the next step be an assisted living place or a care home?

As above, he needs a reassessment and a carer visit for bedtime. I’m sure he prefers you doing it but if you are close he will understand that it’s too much for you do to on a regular basis.

It also sounds as if there needs to be a gentle but frank discussion about his longer term expectations - not so much life expectancy but possible future needs for more care, hospice care and so forth.

You probably won’t be allowed time off as he wouldn’t be considered a direct relative. (Stupid system.) Would it be possible to set up a bed and commode downstairs for him so that he doesn’t have to get upstairs? You could get carers to wash him on the commode. That might be the cheaper/more practical alternative to a stairlift. His behavioural changes suggest that maybe his cancer has progressed. It may have spread into surrounding organs and is causing pain or maybe affecting his ability to digest food, etc. (This would affect his energy, attention, mood, etc.)

I'm sorry to hear of your uncle's diagnosis MC, mesothelioma is a heartbreaking condition. Can I ask, is he receiving all the financial support he is entitled to? He should be receiving IIDB and AA at the highest rates, as well as a lump sum payment. I understand it can be difficult to talk about money, but this means he can get it whatever help he needs without having to wait for assessments, and also that he can have carers that are there for a decent amount of time, time for a chat and not just to get him in bed and gone again.

There's also fast track funding, which can be arranged if his medical team feel his health may be deteriorating quickly. As well as night sitters, should he need someone to support him (practically or emotionally) through the night.

I think it's time for an honest conversation with his specialist team about his prognosis, whether he wants any more active treatment or if he would rather be kept comfortable and well looked after (palliative care).

I hope my post is not too presumptive. It's a truly horrible condition.

On the pain medication, have you spoken to his specialist about this, or ideally a palliative care doctor. Many medical professionals don't understand the pain that mesothelioma causes, it is difficult to describe and as such is not taken as seriously as it should be. For us, the key to getting it under control was continuous long acting drugs (Longtec), that can be topped up for breakthrough pain with shorter acting drugs (Shortec). Really important to have the long acting meds in place and taken on time.

If he can't manage his drugs, he can have a syringe driver fitted, which can be managed by the district nursing team. That's not normally used until the end stage, but it's always an option that you can ask about.

Also regarding being a carer and working, you can be recognised as a carer without being a direct relative, you don't need to be related at all. It may be worth taking a few days off, once you're able to confirm appointments to speak to his specialist, to give yourself some space to make sure everything is in place.

What a lucky man to have you as a niece and god child. I think old age and pain (plus the pain relief) makes fools of us all. That’s the source of the grumpiness not a change in his feelings towards you.

With the coal fire, is an oil filled radiator an alternative? It’s a pleasant heat with a thermostat and quite economic.

With work, do you want or need to take time off? I manage quite a lot of people and would try to be flexible for anyone who had explained the nature of their caring relationship. I recognise that relationships take different forms and that a ‘close’ relative might be someone other than a parent or child. Hopefully your employer will do similar if you need and want to take some
Time to help.