What should I ask for? Who should help? What to expect?

[RentalsDrivingMeMental]

I've posted in AIBU before about my elderly dad and got a mixed bag of responses (www.mumsnet.com/Talk/am_i_being_unreasonable/4204853-Unhappy-at-GPs-regarding-elderly-parent)

I'm hoping by coming on here I may get more support.

Dad is 87, unable to move around much due to arthritis in feet. He complains constantly of the pain. GP has in the past prescribed Naproxen and Co-codamol which cause chronic constipation, and the issues arising from that are in my first thread.

We've had about 3months of mum and dad just getting on with life, dad still in pain, mum still just about coping. Dad started feeling unwell a couple of weeks ago saying he felt he was dying, mum rang GP, GP suggested Covid test. Mum rang me up at work, so I rushed to theirs with my LFTs (I work in a school). Both tested positive, and PCRs the next day confirmed it. Mum (85) said it was like a cold, she just got on with it. Dad however felt wiped out. They finished isolation 4 days ago, so are able to get out and about and I can again visit (I too had to isolate).

Mum rang me in tears earlier, dad is still complaining of pain and that he is dying. I advised 111, but she said it's a recorded message telling her to go online. I go round and visit, just to give my mum a handhold. Dad isn't eating much, is drinking fluids, can't walk much other than to the loo and back. No interest in life, says he wants to die, the pain is all he can think about. He can't sleep. He's taking paracetamol and has pain relief gel for his feet, but says it doesn't stop the pain. GP has referred to a pain relief clinic. I have contacted SS to ask for a review of support.

What else could I be looking into to help support both my mum and dad?

Think about what's called the activities of daily living, so getting dressed, eating, washing, access to the community etc. Those are the things that social services will support with. Pain management is NHS, it's generally useful to be clear about what support would be useful (meals on wheels, care to support with washing/getting up in the morning etc)

And there is no point asking social worker about pain management, or the nhs about getting food prepared, if that makes sense?

You can also ask for a carers review for your mum, this could help fund a carer to sit with your dad to give your mum a break.

If you are asking for this kind of support be aware of the cost of contributions, if it lasts more than 6 weeks a financial assessment will be done.

I'd also ask for blood tests for vit D and vit b, (from gp) as being low on these can really contribute to feeling dreadful... there are probably other tests which are useful in dealing with pain/fatigue.... others may have good suggestions on this! Just I know that this really helped others with pain management

Definitely blood tests. These symptoms could be linked to lots of things. I've been in a similar situation with my Dad.

My mum had terrible pain from osteoporosis, she's crumbling away and has morphine patches which weren't helping at all. We had a meds review with a GP and he suggested that as the opioids weren't doing all they should she should try amitriptyline. I don't know if this would be of any help to your dad, but it certainly has worked with mum.

Thanks @BaklavaBalaclava. Dad can still get himself dressed, washed, eat etc, those daily activities. SS came a couple of months ago and did a review and put rails up etc in the home to help him. It is definitely more about pain relief/management and support for mum I feel, so I'll ask SS about emotional support for mum as his carer.

Also thanks to @Hotpinkangel19 for suggestion of blood tests.

@finalcall Funnily enough I think Dad has had Amitriptyline in the past so I've looked into that and that could also help with low mood and lack of sleep so I'll raise with GP.

Good it was a game changer with mum. It was a locum GP who suggested it

Reading with interest as my mum has pain and limited mobility and is also on naproxin and still in pain. I will look at amitriptylin with a view to getting back to GP. I have no sense she is taken seriously. I will also have a read of your other thread. Good luck with your parents.

Also contact the carers association for support for your mum.

Thanks @Zolrets - I hope you too get somewhere with your mum.

I asked for his GP to visit him and I've been told he'll get a visit some time this week, not sure when, even though I've said about the pain and his wanting to die, not eating etc. I was shocked by this because it seems our frontline GP service is under such strain that's all they can offer.

It makes me think that I don't want to get old.

Ask Social Services for an assessment.

@DinosaurDiana

Ask Social Services for an assessment.

Sorry, seen you’ve already done that. The complaining of wanting to die is a common one unfortunately, and we jolly along FIL by saying ‘it’s not your day today’. There’s not a lot you can do and it wears you down to keep hearing it. My DF was struggling to sleep so was given an antihistamine which helps.

@finalcall

Good it was a game changer with mum. It was a locum GP who suggested it

@finalcall GP visited, no other pain meds were recommended or discussed according to parents. Dad still complaining of pain, eating little and still not sleeping. Tried ringing to clarify consultation with GP, no answer, it just rings.

@Zolrets - I hope you have better luck!

@DinosaurDiana - was it phenargan?
You're right, hearing about wanting to die is very wearing, but I just feel so sad for my dad. Also upsetting for my mum who's 85 and been through bowel cancer recently and is still going through 6 monthly checks to make sure it doesn't come back.

@thesandwich I will look into that, thank you.

Yes, I believe it was but under a different name.

How do they feel about going into care ?
We’re currently fighting the battle to get FIL into a care home that he desperately needs to be in, but refuses to go into. It’s heart breaking to see the desperate/ dirty life he now lives when you remember the man he was.

@DinosaurDiana

How do they feel about going into care ? We’re currently fighting the battle to get FIL into a care home that he desperately needs to be in, but refuses to go into. It’s heart breaking to see the desperate/ dirty life he now lives when you remember the man he was.

Nothing the OP has posted indicates that her parents would be better off in a care home. People are far too quick to use care homes rather than look at alternatives.

OP have your parents got support in the house with cleaning etc? If they need help with personal care (Washing, dressing etc) then SS will advise and arrange if necessary.

Your parents both sound as though they will be eligible for Attendance Allowance. If they apply for that and are awarded it, that will help pay for some extra support.

Good luck

@RentalsDrivingMeMental I’m sorry you waited so long and then got no other options suggested. Again, it sounds very similar to my mum’s experience. I’m confused/mad for my mum as my Dad, who died 18 months ago, had bowel cancer and a range of other complaints and took opiate based pain relief for years. Yes, he was addicted and couldn’t come off it but he wasn’t in the daily grinding pain my mum is and managed to maintain some facets of a normal life such as driving, shopping and even doing a sport. My mum is miserable with pain, unable to sleep properly and has a poor quality of life.

Also my mum claims, and of course you can’t get to the bottom of whether this is a fact as it’s impossible to speak to the GP, that the dr said she can’t have anything stronger for pain relief as she lives on her own and would be unsafe?! Again, I draw then comparison with my dad; was he really allowed strong pain relief because he lived with a partner?? A partner who was even then capable only of picking up a phone to dial 999? Do people in care homes get offered better managed pain relief??

I would be asking for a second opinion on pain relief. If opiates are causing constipation the GP should be prescribing Movicol to take each day.

There’s a thread in AIBU at the moment on the short comings of GP’s. It’s hard to get a first opinion never mind a second. I guess that second opinion would be a referral to a pain management clinic? I’m not the OP however for me/ my mum that entails a whole other set of problems.

Emma - I was simply asking the question, not suggesting that she dumps them in a home and wipes her hands of the responsibility 🙄

@DinosaurDiana

How do they feel about going into care ? We’re currently fighting the battle to get FIL into a care home that he desperately needs to be in, but refuses to go into. It’s heart breaking to see the desperate/ dirty life he now lives when you remember the man he was.

The care home bit I'm loathe to bring up at the mo until all other avenues have been explored. Both my parents had their parents in care or residential when necessary so they know it's an option in the future.

I agree it's heartbreaking to see the people they once were diminished as they get older and more frail. It shouldn't have to be like this, it's certainly making me look at my long term health and plans. I absolutely dread getting old if this is what's in store.

@EmmaGrundyForPM

OP have your parents got support in the house with cleaning etc? If they need help with personal care (Washing, dressing etc) then SS will advise and arrange if necessary.
Have contacted SS for another assessment - they've been once, back in April, but he's deteriorated since then. Mum is OK physically, just needs emotional support. Dad I can see needing help with personal care in the near future.

Re attendance allowance, I will look into that thank you.

@Zolrets Quality of life - exactly! Dad has none; he can't watch TV or read due to pain (also hearing/eyesight issues which is another thing for GP to address), he can't walk without holding onto furniture (and certainly can't walk outside), lack of sleep, lack of appetite. He just sits in his chair complaining of pain.

I tried taking them out for a drive in the car, just for them to get out and lift their spirits, but after 15mins he just asked for me to take him home. I begged him up for doing those 15mins mind you and I did get a bad dad joke out of him for it!

@WetWeekends

I would be asking for a second opinion on pain relief. If opiates are causing constipation the GP should be prescribing Movicol to take each day.

Dad has something for that (not sure if Movicol) but he still ended up in A&E twice earlier this year with impaction. Dad has had problems with his bowels (and bladder) for as long as I can remember...

Can you take him to the doctors - actually going in to the consultation to advocate for him?

I agree that the constipation could be addressed if the other painkillers will help him. Also what about his mental state? Is it possible that he's also suffering from depression and needs something to help with that?

That must’ve been scary for him OP, and you. They really shouldn’t be just leaving him in pain there are lots of options for pain relief so they shouldn’t just give up because the initial choice wasn’t suitable.