Struggling

Hi everyone... An update. Dad has deteriorated a lot within the last few days. He's not in pain particularly but he's incredibly breathless. We are now in the process of trying to arrange overnight support on top of the visits.

We have carers coming in 4 times a day, we are in the UK so I'm not sure how it works in the USA but the carers aren't nurses, they take care of his personal needs. Then we have district nurses who can prescribe medicines etc and on top of that we have the palliative care nurses from the hospice. Sadly the district nurses have been not much help at all. They're pleasant enough when they come but they were supposed to be coming every day, we haven't had a visit in 2 weeks. The same with the palliative nurses. Now i understand that maybe even up until last week there wasn't much for them to do as he was fairly stable. However, trying to get support in the last few days has been hopeless. I called last night and was told they didn't have a record of him! Communication between departments has been a problem throughout.


Anyway... We are all stressed out as it is... Palliative nurse is apparently coming tomorrow but my problem is... I'm getting told different things all the time. As his breathing was so bad a Dr came to see him this morning and suggested oxygen. Spoke to one of the nurses later on and she didn't think it would help and suggested diamorphine. I'm at my wits end... My question is... Has anybody here got any other suggestions about what might help to keep him comfortable? At the moment we are relying on liquid morphine and a little hand fan. The hand fan seems to be more effective than the morphine.

Sorry if this is a bit of a rant... It's just been really poor the continuity of care and we are feeling pretty desperate. Every person we seem to speak to says something different even down to the use of a bed pans. I call one day asking if one can be delivered, told no he must 'go' in his nappy now as he cant use one in his hospital bed at home. Next day... Sure enough.. Complete turn around and told we can use one. Honestly... I could go on and on. It's only today when the carers pointed out that we should be getting more support that it's really got me thinking. I feel like he's been really let down... He built a relationship up with his original palliative care nurse, she's supposed to visit every week... she disappears for 3 weeks and we haven't seen her since.

Anyway... Enough moaning. Any further tips to help with breathlessness? X

My mother had both oxygen and morphine to ease her breathing. The problem is that morphine suppresses breathing, even though it eases it. It's a balancing act. He should be checked for pneumonia - if he is accumulating fluid, it can be tapped.

Everyone's budget is tight so costs will be cut wherever possible..It costs MONEY, serious MONEY to provide all these services..But supplemental oxygen will indeed make him feel better and more comfortable..A machine called an oxygen concentrator can be rented from a medical supply company. In some locations it's more economical to use a small liquid oxygen tank that gets topped off once or twice a week..

When my mother was in hospice they provided an oxygen concentrator and it helped her a lot.

Andrew

So sorry you and your father are going through this. Few things I learned having helped my father through palliative care recently. At some point the nurses become less valuable than the nurses aides. They wanted to keep switching the nurses aides on us but my father would only listen to one of them...fortunately she was able to convince her manager that she was needed more consistently (which was never much). We never felt my father got adequate attention and I remember numerous calls for support that were met with some instructions over the phone. This was more than frustrating because my father could sense that we were covering for the lack of help and he could not understand why he wasn't getting more focused support. We had never been through anything like this so we did not know what should be expected and every now and then there would be a flurry of support that would make us feel that all was good. On the breathing, the oxygen reduced my fathers anxiety over shortness of breath (which somewhat helps stabilize things). Also propping my father up on pillows helped as laying flat makes breathing more difficult. We ultimately bought a bed that you can adjust but it didn't make much of a difference over the pillows. It sounds like you are doing everything in your power to support your father while also fighting with the system to get him the support he deserves. I salute you and wish you and your father all the best.

Kathy77] said...
. even though I'm a wreck inside I'm completely calm around him....

And no doubt you know, that’s exactly on of the really important things you can do to help him. You are an amazing daughter. He is blessed to have you.

Thanks for all your support. It’s kind of you to say that I’m being helpful... I don’t feel it. I would like to comment on each and every one of your comments but I’m a little (rather a lot)!tired this morning... so I’ll just refer to the previous post. Dennis... brought a tear to my eye and made me feel like I’ve possibly made a difference.

Hopefully many of you here have this thing under control... those of you who are in a more precarious position.... all I can say is.... for Dad... at this stage he’s becoming less aware of what Is happening which is a good thing. It’s probably more distressing for us than it is for him if that makes sense. With modern medicines, pain has been controlled so if that’s one thing that you worry about.. I guess I’m saying try not to. There are options. With regard to the breathlessness.... when he has an attack, yes... I can see panic in his eyes but for him... once it’s regulated he’s calm again and generally just falls asleep. A few weeks ago I was concerned about how much he was sleeping but now i can see that it’s better for him and tells us that he’s comfortable.

I need to call his own Dr this morning for him to sort out the oxygen, as the dr who came out on the weekend was ‘out of hours’ he could only write to Dad’s own Dr to recommend... so I’m praying that will be organised quickly although I think it may take a few days.

Apologies if I’ve repeated myself.... don’t know whether I’m coming or going! Thanks for all being there... I’ve tried other forums but there’s none like this, plus over the years I feel like I kind of know a lot of you.

Much love
K x

Good morning, Kathy,

I don't have a lot to add to all that's been said. I just wanted to let you know that we are praying for you and your dad today. When all is said and done, you can rest easy, knowing that you stood by your parents in this horrific time. You are one of my heroes.

Donna.

Kathy, I've been following this and I've been reluctant to post since I don't really have anything to add for your situation. But it's clear to me how loving and helpful you are with your father and that must be incredibly comforting for him in this situation.

Thank you for all your words... it’s a difficult road to tread. All of you who have lost loved ones please know that I have read your messages and said a little prayer.

Since I last posted... I can’t really remember where we were up to. Dad has been fitted with a catheter as it was too difficult for him to move to use the commode or urinal. I ended up assisting with that as the nurse was struggling (I’m not a nurse... I wasn’t very happy about it) but... it’s done.

He apparently has a chest infection and so was vomiting and unable to keep anything down. Not a lot but ... enough to be concerned that he wasn’t gaining benefit from his medication. The decision was made to put him on a syringe driver as he was still feeling nauseous after his anti nausea injection. I got the impression it wouldn’t necessarily be until ‘the end’ but I’m not sure now.

I don’t know how I feel about the driver... he’s ‘out of it’... he doesn’t really waken but he’s not vomiting so... I don’t know. He’s very ‘drugged up’ it’s heartbreaking. Up until the driver he was still Dad...able to conduct a conversation ... now he’s barely awake and his speech is slurred. It’s hard not to blame the driver for this but I’m also very aware that he may well be more comfortable with it... and that’s all that’s important.

The nurses are unable to give us a time... looking at him you’d think he wouldn’t make the night but... this can continue for a few weeks... this morning the nurses didn’t feel he was quite at ‘that stage’... I don’t know... we are close... but things are still working. When he opens his eyes he asks for water, his bag is filling with urine. He is very constipated though.

I’m lying by his bed... I have Nat King Cole, one of his favourites playing gently and I’ve told him I love him a million times.

I guess I just wanted to reach out... not an easy read I know. Dad... the most dignified person I know... even now... when the nurses visited this morning he tried to reach his hand out and say thank you.

Ok.. tears are coming and I need to stop that in the room so I’m off for now.

Sending you all lots of love.

K x

It's a difficult situation and you're handling it well.

Peace,
Andrew

you’re doing a great job, Kathy, helping your dad through this passage. Thank you for keeping us up to date. Our thoughts are with you.

Kathy, so sorry, you are a rock to him though.