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Back in hospital. Sigh.

AztecCamera87

Registered User
Mar 12, 2019
198
0
Hey everyone.

Dad's back in hospital with a mild case of pneumonia. Not ideal, but at least he's had his first vaccination jab! I am finding it all rather frustrating though.

On the phone today (you can only visit between 6 and 8, which is fair due to covid, but dad has no mental capacity so really should be allowed an advocate with him to speak with medical professionals) I was told I couldn't speak with a doctor as I wasn't next of kin. Never had this before. I argued that I was one of his attorneys for health and wellbeing and will be on his medical records. But I was still told no.

Anyway, what makes it even more odd is a doctor called me last night to discuss DNR and the pharmacist called me in the morning to discuss meds.But i couldnt speak with a doctor this afternoon to ask about SALT and delirium risk.... Odd.
 

Sarasa

Volunteer Host
Apr 13, 2018
3,021
0
Sorry to hear you dad is in hospital. Is it worth contacting the PALS service at the hospital to explain your father will need and advocate when discussing his health and that you should be allowed to discuss his health with the doctors treating him.
Hope they get him sorted soon.
 

AztecCamera87

Registered User
Mar 12, 2019
198
0
Sorry to hear you dad is in hospital. Is it worth contacting the PALS service at the hospital to explain your father will need and advocate when discussing his health and that you should be allowed to discuss his health with the doctors treating him.
Hope they get him sorted soon.
Hiya, thank you for your reply. I have tried contacting PALS. left a short voice message asking them to call back.
 

AztecCamera87

Registered User
Mar 12, 2019
198
0
I have called the hospital ward twice this morning, but still nobody will call back to speak with me. My sister has also called and had no luck.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,330
0
Yorkshire
so sorry you haven't been able to get through @AztecCamera87 so frustrating for you
is there an email address you could use to point out how often you both have tried and how concerned you are ... at least the there's a 'paper' trail
 

AztecCamera87

Registered User
Mar 12, 2019
198
0
Yesterday I stood at the nurses station for over half an hour waiting to speak to someone in order to collect my power of attorney documentation I dropped off the previous day (not the first time i've had to do this as well!). People went about, and nobody said a word to me, felt invisible. I understand it's busy in hospitals, but even just a hello, sorry we're busy right now would have done wonders.

When I did get to speak with a nurse, they sharply told me they did not know where it was or why I had dropped it off (I was asked to by a doctor), I asked if they could take a look, maybe it's where important paperwork is kept. They told me no, they can't, they're busy. Luckily, a HCA must have overheard the conversation and gave it to me.

I then tried making conversation with another nurse about how dad was doing, who has been to see him during the day etc, when they came to his bedside to give him a couple of injections. They told me I would need to speak to a doctor as they can't tell me (again, this is just odd, as previous hospital visits I would normally speak with dad's nurses, they would take a note of any concerns I had, such as things out of the ordinary in his behaviour etc and then just kinda give me the lowdown from his records. So i asked if I could speak with a doctor, they told me no... they're not around. sigh!

I really don't want to go back to the hospital, but if I don't, he won't have any visitors...
 

AztecCamera87

Registered User
Mar 12, 2019
198
0
How frustrating @AztecCamera87. Have you tried asking the ward sister or the matron. There should be a contact number on the ward somewhere. I hope your dad is better soon.
I believe the nurse i spoke to trying to collect the LPA documentation was the ward sister. But i may be mistaken. Why does it need to be so hard though? If you had a kid in hospital, my dad is basicaly a child but with less ability to retain information, i wipe his bum, remind him to swallow his food and run around all day doing things for him. Would the hospital staff act in the same way to that childs parent or guardian? Serious question, I don't know.

Why do carers need to work themselves into a fragile mental state just to get basic levels of information or help?
 

Everest1969

Registered User
Jan 9, 2021
42
0
I believe the nurse i spoke to trying to collect the LPA documentation was the ward sister. But i may be mistaken. Why does it need to be so hard though? If you had a kid in hospital, my dad is basicaly a child but with less ability to retain information, i wipe his bum, remind him to swallow his food and run around all day doing things for him. Would the hospital staff act in the same way to that childs parent or guardian? Serious question, I don't know.

Why do carers need to work themselves into a fragile mental state just to get basic levels of information or help?
Oh my- this sounds so frustrating! My dad is also in hospital at the moment, and when I call up they often(but not always) ask me if I'm next of kin. I just tell them that my mum has dementia and that I have an LPA and this normally satisfies them. What happens if you call the hospital? Our local hospital has a new system in place since covid, where you are not put through to the ward as pre-covid times, but get put through to someone who has access to all of their notes. I'm finding this a lot easier to deal with, as when calling the ward you are always dependent on how calm/busy things are to be able to speak to someone. I hope things get easier for you and that your dad is able to leave hospital soon.
 

AztecCamera87

Registered User
Mar 12, 2019
198
0
Things change very quickly. We have now just had calls to say he's been moved ward, a call from the doctor on his new ward to discuss his feeding and a call from the SALT team all in the space of an hour! However, dad has taken a turn for the worse and it sounds like this weekend could be make or break with what happens next....
 

Sarasa

Volunteer Host
Apr 13, 2018
3,021
0
So sorry to hear of your dad's decline @AztecCamera87 , but glad he's been moved to a ward that seem willing to engage with you in providing his care.
 

anxious annie

Registered User
Jan 2, 2019
810
0
Sorry to hear about your dad @AztecCamera87 and his recent decline. Staff seem better on his new ward. I wonder if the hospital has an Admiral nurse who could intervene for you if you have any more difficulty with getting information/visiting. You could look on the hospital web site to see if they have signed up to the Dementia friendly charter. I hope you have better news over the weekend.
 

Duggies-girl

Registered User
Sep 6, 2017
2,544
0
So sorry @AztecCamera87 A hospital stay for someone with dementia is not easy and I remember my dads experience to this day and the staff at the time who would not listen to a word I told them as they knew best and could handle anything. Dad was in there 3 weeks and I visited twice a day and was never able to speak to a doctor.

I hope the new ward is better for your dad and that the staff have some common sense and make things less difficult for you. I hope you have a good weekend and find your dad more settled and things are just better for you both.
 

AztecCamera87

Registered User
Mar 12, 2019
198
0
For anyone that may be interested, dad's infection has cleared up and off the antibiotics and oxygen. They are going to be getting him back home tomorrow or thursday.

We are still not sure on his diet at home as hes only been eating yoghurt in hospital and not drinking fluids due to choking. Really hoping we are giving information sheets or something!

The doctor seemed quite downbeat with regards to his medium / longer term prospects and spoke of pallative care options, but im still not really sure what it means in practice, except keeping him out of hospital. Although its so hard to know when he needs to go or not. I asked if he could have an assessment for NHS continuing healthcare before discharge and was kinda fobbed off.

Anyway, he's fast asleep right now, and pretty gargly in the back of his throat. Here's hoping the next few months will be smooth, although i fear they wont be.
 

nae sporran

Volunteer Host
Oct 29, 2014
7,790
0
Bristol
That's good news on the infection front @AztecCamera87. So many worries for the future though. I hope something in these factsheets and links are of use to you.
 

Weasell

Registered User
Oct 21, 2019
1,282
0
For anyone that may be interested, dad's infection has cleared up and off the antibiotics and oxygen. They are going to be getting him back home tomorrow or thursday.

We are still not sure on his diet at home as hes only been eating yoghurt in hospital and not drinking fluids due to choking. Really hoping we are giving information sheets or something!

The doctor seemed quite downbeat with regards to his medium / longer term prospects and spoke of pallative care options, but im still not really sure what it means in practice, except keeping him out of hospital. Although its so hard to know when he needs to go or not. I asked if he could have an assessment for NHS continuing healthcare before discharge and was kinda fobbed off.

Anyway, he's fast asleep right now, and pretty gargly in the back of his throat. Here's hoping the next few months will be smooth, although i fear they wont be.
You need a speech and language referral ( salt)
If it was mum I would go onto eBay or similar and buy thick and easy.
Make a normal squash drink, add thick and easy and it turns into a jelly like consistency.
You say to the person ‘ lovely mousse for you’ and spoon feed them.
Why ?because this way they won’t aspirate ?
 

AztecCamera87

Registered User
Mar 12, 2019
198
0
Dad's been home for a couple days now. So far he's spent most of his time sleeping or being sleepy! I'm still a tad confused with his diet, as the doctor told us that dad should just eat what he likes and be comfortable.

Anyway, he's managed little bits of food, little bit of sandwiches, porridge, bananas, yoghurts and very thick water in small sips to help try and keep him hydrated. Probably the best we are going to get for now. He's rather frail, I guess it's best he just enjoys the food he eats, rather than fretting too much about what hes eating at this stage.

One thing, has anyone experienced unexplained swelling with PWD in the later stages? Both dads arms have swollen up the last 2 days. Is it possibly a circulation issue? Problem is they didnt seem to be swollen in hospital.
 

AztecCamera87

Registered User
Mar 12, 2019
198
0
Just wanted to get out what's been going on over the last week and a half/two weeks... Even if nobody is interested, it just helps me take a weight off my shoulders.

Firstly, the swelling has gone down in his arms, the district nurses came and took a look when they were looking at his pressure sores, they said best to monitor it but it should be fine as the arms aren't so swollen anymore. Dad has been eating a bit more which is good, but loses his concentration really easily, sadly started coughing again after any thickened liquid. But with his diabetes (and especially that his blood sugars will go up high at times) and with the weather getting warmer, he will need to keep him hydrated to the best level he can be. Shame we can't just IV fluids at home!!

It was dad's birthday last week. All very low key, as he finds it all very confusing and overwhelming. But he seemed to like his cards and little gifts, even if he didn't really have much of a clue what was going on. Disappointed that neither of my brothers sent any sort of card, especially when I always ensure 'dad' sends one for birthdays and Christmas etc. Oh well. Out of sight, out of mind.

Dad's GP has stopped his donepezil, as they don't think it has any benefit anymore, and they want to make sure he's not taking medication which isn't necessary. I'm inclined to agree, but I had also been trying to get his dementia medication reviewed for the past 6 months! So far no noticeable change in behaviour or extra confusion. Blood pressure has also been pretty high over the last couple days, GP has just told us to record readings and report back next week (or get him to hospital if they go consistently far too high...)

On future news, the inevitable is coming up within the next few weeks and we will be having to go back to the office.
 

Weasell

Registered User
Oct 21, 2019
1,282
0
Just wanted to get out what's been going on over the last week and a half/two weeks... Even if nobody is interested, it just helps me take a weight off my shoulders.

Firstly, the swelling has gone down in his arms, the district nurses came and took a look when they were looking at his pressure sores, they said best to monitor it but it should be fine as the arms aren't so swollen anymore. Dad has been eating a bit more which is good, but loses his concentration really easily, sadly started coughing again after any thickened liquid. But with his diabetes (and especially that his blood sugars will go up high at times) and with the weather getting warmer, he will need to keep him hydrated to the best level he can be. Shame we can't just IV fluids at home!!

It was dad's birthday last week. All very low key, as he finds it all very confusing and overwhelming. But he seemed to like his cards and little gifts, even if he didn't really have much of a clue what was going on. Disappointed that neither of my brothers sent any sort of card, especially when I always ensure 'dad' sends one for birthdays and Christmas etc. Oh well. Out of sight, out of mind.

Dad's GP has stopped his donepezil, as they don't think it has any benefit anymore, and they want to make sure he's not taking medication which isn't necessary. I'm inclined to agree, but I had also been trying to get his dementia medication reviewed for the past 6 months! So far no noticeable change in behaviour or extra confusion. Blood pressure has also been pretty high over the last couple days, GP has just told us to record readings and report back next week (or get him to hospital if they go consistently far too high...)

On future news, the inevitable is coming up within the next few weeks and we will be having to go back to the office.
Wow! You have so much on your plate!
I can imagine the stress that a return to work is putting on you, sending you strength!
 

AztecCamera87

Registered User
Mar 12, 2019
198
0
Wow! You have so much on your plate!
I can imagine the stress that a return to work is putting on you, sending you strength!
I've been working from home, which hasn't always the best thing, especially when I need to concentrate at the task at hand. A part of me is happy I will be going back in to Central London. Dad is no longer a falls risk, he is pretty quiet and doesn't get aggressive towards the carers, even if he would rather have me doing everything! I imagine there will be teething issues at the start, but as long as the district nurses turn up to do his Insulin injections, we should be fine. However, the care cost will triple! eep!