Nearing end stage?

[Martha_k_uk]

Hi all. I have just joined this site and have been reading through your many posts. I am saddened to see so many people struggling with this condition - and the affect it has on all concerned.

There is so much to say in this post...I'll try and keep it brief and not turn into war and peace.

My dad is in a nursing home, we think he is approx 7-8 years in but was only diagnosed 3 years ago.

He is in a nursing home, but recently seems to have deteriorated. He is losing weight rapidly, and has been unwell (non-specific) on and off since Christmas. Some days he is non-responsive, and others confused but some days quite lucid. He can speak very quietly and speech is somewhat slurred and he struggles to find the right words.

Recently he has been off his food and not drinking much (soft diet, thickened liquids). He looks so thin, he grimaces as if in pain but denies any if you ask him. He is often cold to touch, but can also be clammy and sweating - sometimes he feels cold but mostly says he's ok.

Latest 48 hours he has been drinking well but barely passing urine. Yesterday nurses noticed blood on his lower parts and when tested is urine it was full of blood and other things. They are concerned this could be body breaking down (kidney failure).

I wondered what your experience is with this? No-one seems able to advise us and our experience with healthcare professionals throughout this journey has been poor to say the least.

Anyway...if you read to the end...thanks for sticking with me! Any advice greatly appreciated.

[Kevin_1]

Hi Hchriscoli

Welcome to the forum.

This sounds worrying and distressing.

It sounds like urgent clinical investigation is needed too.

Sorry not to be more helpful.

I do wish you and him the best on this.

Kevin

[Martha_k_uk in reply to Kevin_1]

Many thanks for the response Kevin. We have been advised to wait and see. He was very subdued and sleepy today, my s-i-l (a nurse) thought his breathing seemed a bit shallow and fast. The problem we have is knowing where to turn for advice - GP isn't very helpful, it's the GP thay the home use and whilst very pleasant doesn't know my dad or the condition very well.

We have had hospice contact but they have just discharged him from day care as they are not equipped to deal with him and so we're in a kind of limbo now.

Waiting...And watching, feels like all we can do.

[Kevin_1 in reply to Martha_k_uk]

Wishing you the best - Must be hard.

[doglington]

Welcome to this site. Sorry to read about your father. It is very distressing, I know.

As your father can talk, do you know his wishes for continuing care ? I think it is important to allow him to make any decisions he can - there is so little for him to control.

Keep us informed.

love, Jean x

[Martha_k_uk in reply to doglington]

Thanks Jean.

Yes i think we are quite well prepared regarding his wishes, we have already had discussions and have an advanced directive in place together which includes DNR.

Take care

Hayley x

[doglington in reply to Martha_k_uk]

Thats good. I know our doctors were relieved that we were all clear and united about future care for Chris.

My thoughts are with you. Its all so sad.

love, Jean x

[Careenh]

So sorry to hear this... it's a very difficult journey and everyone's is different. I pray that your dad is peaceful and not suffering😢 this us my fear for my mum. You will find some amazing people on here always willing to help with advice. God bless you. ❤

[Marie_14]

I am so very sorry to hear about your Dad. At the end all the organs do fail and I hate to say it but that may well be what is happening to your Dad. He doesn't sound as though he has much energy left to fight does he?

Can you not get a doctor to the house to access him? I don't understand the Hospice saying they don't know what to do. They have doctors at the Hospice so he could be admitted there for a few days to see what is happening? Do you have any medical help? If not and your Dad is the same tomorrow then please try to get someone to see how he is?

Come back to us and tell us? Are you in the UK?

Marie x

[Katiebow]

Hello Hchriscoli, I'm sorry that your dad is showing all of the symptoms that are so worrying. My husband has lost lots of weight and getting liquids down him is a battle. He never declares that he is thirsty but his urine is often strong and am sure that hecakwsys has a low grade urine infection. He also gets very hot and sweaty although his feet are always freezing cold. He wants no medical intervention in hospital so I'm on tenderhooks thinking he has an infection and how I will deal with things whilst honouring his wishes. The disease always tries to do its worst.

Love Kate xxx

[raincitygirl]

Hi Hayley; Sorry to hear about your dad. FYI there is a string of posts on this site titled Signs that the End is Near, started by member Ketchupman some years ago. You might find something useful there? If you type the title into the search window in the upper right hand corner of the screen, it should come up in a list.

A parent's illness is hard enough to take - it is so wearing worrying about whether it's "really the end" or not, yet you can't help it, can you? I remember that with both my parents. Hugs to you during this difficult time.

Anne G.

[leyana]

So sorry to hear abt your dad Hchrisxoli. It must be a harrowing time since u can get no answers. Just hang in there talking helps alot. We are there for u.

Hugs n prayers

Best wishes

Ella

[Martha_k_uk]

Thank you all for your kind words and helpful responses. We are based in Cheshire, UK. I am very lucky to be sharing this burden with my siblings as I know some of you have had to deal with this on your own.

My mum is worried sick, they had a very traditional relationship and she relied on my dad for everything...my sister and I now take this place

Thanks for the pointer tihistoric threads raincitygirl I will have a look now.

I am going to see him later so will report back.

Many thanks

Hayley

[sasmock]

Hi Hayley - is the nursing home giving your dad some proper pain relief? If he is going in to kidney failure, he's likely to be in a lot of discomfort but may not be able to show it. This happened to my dad in a nursing home, by the time he got treatment, his GFR was 5 and the consultant said he would have been in the most extreme agony. Hopefully the nursing home can take advice from an expert and won't assume that he's not in pain if he's not expressing it? In our experience, the home just wan't adequate in experience or level of care, so I hope it's very different for you and your dad gets the care he needs.

Best wishes

Sarah

[Martha_k_uk in reply to sasmock]

Thank you Sarah.

He denies he is in any pain. He grimaces a lot like be is in pain but when you ask him he says not. That said, he suffered a fractured spine and reported no pain and broke each of his hips and again reported no pain - so much so that the Dr in A&E didn't believe him that something was broken (despite the audible snap when he fell) but apologised after she saw his xrays!

There is no real expert involved in his day to day care, the nurses at the home suggested muscle relaxants to help his continuing rigidity as they are finding him more and more difficult to manoeuvre.

GP does not want to make decisions regarding this however dad hasn't seen his consultant since July last year. We do have a Neuro nurse and she is lovely but doesn't offer much by the way of real advice...just wait and see.

This is one of the most frustrating things, no clear pathway and very little support/knowledge.

H x

[sasmock in reply to Martha_k_uk]

Sounds like you need to shout and jump around a bit, as we had to. Your dad may need morphine. My dad was the same, never once did he moan or complain and constantly said he wasn't in any pain. PSP does mess about with pain perception I think so how can we know.... But my dad was definitely more comfortable on morphine, and I wish we'd asked for it sooner. There are so many things I wish we'd done differently, but it's so difficult to know when you're in the middle of it

[Spiralsparkle in reply to Martha_k_uk]

Add on to my reply below, also ring the PsPa and get them involved it getting your Dad the proper support in place. They have area coordinators so they can ring people on your behalf.

[Spiralsparkle]

Hi

As suggested I think be wise to contact the hospice, I know been discharged from day unit but he is deteriorating and needs good palliative care. If they have an inpatient bed it might be wise for them to monitor him. If that is in his wishes. As Others have said he maybe in enormous pain if it is his kidneys going into failure. Does he show any other signs of being uncomfortable or agitated?

Is the urine being sent off for cultures?

I've also experienced professionals not being very forthcoming so I would be on the phone to all of them saying this is the situation, we need to know what is what here and that he is cared for properly and is comfortable. If he wants future treatment in his wishes and you are worried id call an ambulance. If he doesn't want future treatment then it is banging those doors of people to make sure he is comfortable. My Mum doesn't want to go back to hospital again but if it came to it she might change her mind.

Sending you lots of strength and love.

[Martha_k_uk]

Thanks both. It is so difficult knowing where to turn. I feel like I spend my life arguing with people because nobody seems to know what is going on.

I feel too emotionally involved to make an objective decision but nobody else seems to be able to help.

A sample has been sent off for urinalysis hoping to get some results tomorrow - but the GP have already had one sample which they said wasn't enough (but only when we chased them 4 days later(.

I (and the rest of my family) are increasingly frustrated snd just don't know what to do for the best.

Thanks for your support

[Spiralsparkle in reply to Martha_k_uk]

I unfortunately know that feeling about arguing with people.

That GP sounds pretty damn unhelpful indeed. Do you have to use that GP?

Please ring PsPa and hospice today and really lay on you need help here to make correct decisions and know what is what. Shout and bang with everyone one that you aren't accepting of this 'wait and see' without him being made comfortable too.

[Martha_k_uk in reply to Spiralsparkle]

Thank-you. I will be spending most of today on the phone I feel. Thanks for the advice x

[Spiralsparkle in reply to Martha_k_uk]

Yes it sounds definitely like one of those days of making loads of phone calls to get someone to take notice and jump into action. Don't take no for an answer, keep going . It is hard and emotionally crumpling having to do this. It makes me so mad that support is not there readily at hand for many.

[blackhill]

Yes, get hospice on board for support. Thoughts are with you.

[doglington]

When Chris was at this stage I was nursing him at home and the hospice palliative care team took charge. I don't know if this is so in other areas but they were brilliant. It is a lonely place feeling it all rests with you and you are in an alien land !

Reading the responses makes me wonder if my husband had more pain than he owned. But his only sign was grimacing and that seemed a habit.

What a nightmare this is.

love, Jean xx

[Martha_k_uk]

Hi all.

Latest update - he has uti with 2 types of infection. These results took a week to come through. Dad is eating better but still not drinking much. Dietician been to see him said to weigh regularly and monitor him. Thanks for all your kind words and advice x

[raincitygirl]

Hi Hayley,

Is your dad still improving? FYI there are also a lot of historic post-strings on UTIs on this website. I think drinking fluids is pretty important....

Good luck!

[Martha_k_uk in reply to raincitygirl]

He seemed dreadful yesterday. He's hardly drinking but eating quite well.

I am going to ring the go today. He still hasn't yet received antibiotics despite his first sample being dipped and sent off 2 weeks ago.

Thanks for asking Raincitygirl x

[raincitygirl]

Too bad you have to "ride herd" on them. I guess this disease forces us all to learn to be "squeaky wheels"

Good.luck!

Anne G