So bloody exhausted waiting for someone to die 4

[StiffyByngsDogBartholomew]

continuing from our last thread

www.mumsnet.com/talk/elderly_parents/5036546-so-bloody-exhausted-waiting-for-someone-to-die-3?page=40&reply=140073671

I can definitely empathise. It was after my stepdad passed that mum really struggled. I cared for her at our home for around 3 years, very hard as I too am self employed and managing through covid with schooling from home too. Thankfully mum only really needed to be in a care home from end of 2023, and more for companionship of her own age and medical checks.
It takes everything from you if you are not careful, please try to make a plan with others for support before it's critical, as it's very hard to think when sh*t hits the fan and you are already exhausted bless you.

@nodramamama Thank you for your kind words. I feel really validated. I love being self employed, but to the people in my life it often looks like I can be accessible any time they need me. I wrote my previous post late last night after doing 2 hours of essential admin at around midnight! I’m hanging on by my fingernails.

I'm so sorry and I see you, it's very hard to balance everything. the fact we can barely afford to take time off, doesn't help any when burnout is rearing it's ugly head. Grief then steals even more on top, I have made very impulsive decisions which is unlike me, and needed to reduce hours, it's cost thousands in many ways, not to mention the additional burden of Sadmin, which all fell to me. Mum knew I would handle it all though, so there is pride in that, but overall I am only just surfacing now after 9 months of pain. Please try to arrange help/plan with family/friends for when it happens as you will need a strong net as will your mum.

Small update from me. From having a ravenous appetite (from the steroids) my mum has now decided to stop eating. She had also declined to take any medication, but has been persuaded that stopping steroids abruptly can cause a whole host of other problems. I’m conflicted because obviously I don’t want her to die, but I also think we have to respect her decision and not force her to eat. My worry is how long it can go on. She hasn’t eaten since Sunday evening, and is only having small sips of water.

@Guineapiggiesmalls I'm sorry to hear your dm is declining further but I'm sure you're right to respect her decision. Im afraid it can take weeks or even 2-3 months, though it can also be just a few days (for my godmother once she stopped eating it was 5 days). I hope it continues to be as peaceful as possible.

Hi everyone, I'm new here. I am at a very low point about my declining parents. DM is 84 and DF is 88, and things are speeding up fast.

Both still living independently, however are really struggling. DF has undiagnosed dementia (confusions are definitely dementia and his personality has changed recently, getting aggressive, etc). DM who is compos mentus is hardly eating and dropping weight. Every time I see them there is a new worry, and it feels like a living hell 😔

That sounds v difficult @Frazzledmummy123. Sounds like your dad urgently needs assessed and your mum may need investigations if it's a sudden change.

If they go to the GP together, ostensibly to talk about your mum's weight loss, could you also use it as an opportunity to bring up your dad's issues? It can be very hard to get an elderly person to the GP to discuss cognitive decline as a single issue.

@Frazzledmummy123 so sorry to hear this. The potential for dementia, as well as your mums weight loss are worrying and you are right to take any measures now that you can.

Do you have any way of getting them to add you at the doctor as a key contact? You can register with social services, but they also recommend being a contact at the doctors. Def recommend you notify doctors of your concerns perhaps on the phone and ask for guidance, they can advise how best to frame the appointment perhaps.
Also this next stage can be very very expensive, if they need care, if you have not yet done so please get Power of Attorney for health and also their finances arranged, as this takes several months.

I totally agree that my dad urgently needs assessed, my mum just can't or won't face up to it at all. She has said when confronted "even if there is dementia, there is no cure so what's the point?". She has always been extremely negative and has had me tearing my hair out my whole life. She is the type of person who looks for a problem in every solution.

Everything is too much hassle for her. Their GP surgery is a few miles away and they have to trek there and back in taxis any time see a doctor, if she has an appointment, she moans for ages about getting there and back, etc. In old age, it feels like they have gone out their way to make things as difficult as possible.

House is not appropriate and they are struggling to maintain it but refuse any help. Cant cope with workmen, and in summer never stops moaning about gardeners, etc. No downstairs loo and my dad can hardly walk (walking aids are only used sparingly and grudgingly too). Geographical location of house is also unsuitable, between 2 steep hills andnnot near amenities or transport.

Sorry, I went off on a tangent there. Re my mum's weight loss, she went to her doctor (eventually!) a few weeks ago and has been for a xray last week. As far as I know, no result back yet. She does have a hiatus hernia which she claims means she eats less so maybe that has part of it. However, she shes had thst for ages and seems to be nowadays constantly burping and breaking wind all the time which wasn't doing before.

That's a really good idea about asking their doctor if my name can go down as a key contact. Thanks, I'll def sort that out asap.

I have been thinking about contacting their doctor to inform them of what's going on. I've been putting it off for two reasons. I was hoping that maybe something might prompt them to do it themselves, but also because my mum can be very difficult and there would be an argument if she knew I had called the doctor about them, albeit trying to help. She'd regard it as a betrayal of sorts. I know that call to the doctor is unavoidable, but it's just so difficult when my mum seems to want to just plod on pretending everything is fine when it's really spiralling more and more out of control.

They got power of attorney sorted a while ago. Anything to do with money She will see to, which makes the lack of action over the other things even more frustrating. However, at leastnitnis something done and less to worry about.

Doctor contact is a good start. My concern for you and your mum is that if she becomes unwell, and your dad is no longer able, who handles the PoA then. So the PoA she has in place likely isn't nominating you, but her or your dad if the other one of them becomes incapacitated? So next stage may be to get you nominated, or additional siblings.
Sadly this stage is very hard, I have been through it and my OH is going through it now with his mum who simply won't see reality (see my receny prev posts on this thread). They need protecting but they refuse to co-operate and the lack of independence / increased dependence is very scary. I hope that in my old age I will co-operate at that stage, having been through it, but who knows...

@Frazzledmummy123
We are going through similar with the added complication that our 'oldies' are friends without a family. Fortunately they had given my name a couple of years ago to their GP, but I still found it difficult for anyone to talk to me. The best thing I found was to send them an email detailing numerically my concerns, and asking for their guidance in handling them. It took a couple of weeks but they came back with appointments and referrals, and have never once mentioned my email to their friends.

I said that my purpose in contacting them was to keep my friends safe and well, and I couldn't do that on my own. Hard as it sounds, I also made it very clear that I am not in a position to take on day to day caring responsibilities.

The GP also made an urgent referral to Social Care for help.

Good luck - such a tough time.

I am so out my depth. My mum is now is so weak we can’t get her to and from the bathroom safely. GP was just in and said he thought she had weeks not months, she just wants to die. He said he would contact the hospice but felt that it was a shame to move her, which is fine for him to say but watching him leave and being on my own with no support other than a carer once a day felt absolutely devastating. Utterly despairing

Good grief @Guineapiggiesmalls. If there is a carer coming in, is there a social worker involved? If not coukd you ring the GP again? It sounds as if she needs an urgent increase in care package, or a commode, or thinking again about the hospice place?

So sorry @Guineapiggiesmalls that sounds very difficult, you definitely need more specialist support asap especially if your mum ideally would remain at home (moving would be quite stressful). Are you able to contact local specialist care if your current carers aren't enough, or can they increase visits? Am so sorry this is happening.

@ajandjjmum that is great you have been able to do that. OH and I asked his mums surgery if we could email them concerns and they said no, that we'd have to tell them on the phone (emails only used internally or some excuse). So I did it because OH is overwhelmed and not dealing with it well, as his mum is ignoring much of her situation. Waiting now on test results from the actual doctor, as for a long time I have said her weight is not right, she is like a skeleton, to which she has always claimed doctors said she was fine (but we have discovered it was a pharmacy saying this and she has not been to dr in ages). I am barely able to surface from my own mum passing and now all this, and his dad aging in awful conditions too (divorced, both below the povertly line).

She has a commode, but I can’t get her onto it so the GP suggested pressing her emergency buzzer but that’s not much use when she’s up three times in the night.

Phoned the hospice nurse and asked for a bed. Feel like I’ve put it off as long as we can manage but it’s beyond now. They’re going to let me know after 10am tomorrow. No idea how I’ll manage if they say no.

@Guineapiggiesmalls You need to be very firm with the hospice nurse and insist that you're at breaking point and can't do this anymore. It sounds like your Mum needs a team of people looking after her and not just you. I really don't know how people are expected to cope alone with no breaks or days off. Good luck and I hope there's a positive outcome tomorrow.

We managed to get my mum a bed in a (almost) local hospice, she went in on Thursday and has been declining since then. There’s now chat of a syringe driver for pain relief, which has made it hit home home real this is. She is desperate to die, hasn’t eaten since Sunday and keeps saying that she’s done, which is just at odds with the lovely, vibrant mum I know 😔

The stress of caring had somewhat masked the impending loss.

@Guineapiggiesmalls so sorry, I hope you can be with her and things go as well as they can, please take photos/recordings if you are able to, this is one thing I did not have because it was very sudden and no warning

@Guineapiggiesmalls sending you much support and strength.

@Guineapiggiesmalls Sending heartfelt support at this difficult time. I hope your Mum gets the care she needs.

DF is visibly deteriorating now. Not speaking and keeps ripping his compression bandages off his legs so they look awful again now. This is so long and hard to cope with sometimes.

@Tara336 im sorry, this sounds incredibly tough. I don’t know about you, but I find it easier to bury my head in the sand when there wasn’t visible evidence of how poorly my mum is. It’s such an emotional toll, I hope you’ve got good support around you.

Anyone listening to Radio 4 at the moment? You and Yours talking about care home fees and the bureacracy around it.

https://www.bbc.co.uk/sounds/play/live/bbcradiofourfm

Makes me change my view on assisted dying.

I was concerned about the slippery slope of having a sister dying when I look at what’s happened in Canada and talk to my friends who are doctors there. However listening to this radio program makes me think that I would very much go for that option if I required a care home in my old age to save my DC, the emotional and physical, heartache and complete loss of any inheritance.

Otherwise, what is the alternative? All of my income saved up over the years, going to a private equity fund owning a chain of care homes whilst the workers making minimum wage. Few are talking about that latter point but which seems the greatest injustice to me.

In Canada the state pays the provider and pays for it by taking 80% of the persons income in retirement, leaving all of their assets. If it’s possible there, why is that not possible here?

A[ologies if this isn’t the right thread and having lost my own DPs everyone has my deepest sympathy. It’s just incredible that everyone is being exploited in their final years.