Well I never

User

Posted 21 Jun 2016 at 19:14

Another nudge

User

Posted 21 Jun 2016 at 19:36

DM what a ride this roller coaster is sending you on I am glad that J is in hospital and fingers toes and everything crossed that the infection can be brought under contro soon. . Sometimes it seems that our lives give us more than we can cope with, but Famous for my Buts we somehow do cope because we don't have a choice we just have to do the best with what life has dealt us. Cuddle little D and draw strength from her .
Thinking of you
Lots of love and a huge comfort blanket cuddle.
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 22 Jun 2016 at 07:42

Well what a day, I got the call to pick him up at midday yesterday as although he was in a side room, the noise a dementia patient was making all day and night was too much to bear. So it went like this, 7.5 hours waiting to get him admitted, 11 hours in the room with IVs etc then 7 hours waiting to go home. What a mess our NHS is in.

Anyway, he does look a little bit better from the fluids and he's been given two weeks of antibiotics (GP gave him 3 days), back in Tansulosin and Vesicare so I'm hopeful that this will have sorted it out and now he just needs to recover.

He is still asleep so I'm not sure how he's feeling this morning but he did sleep and that's what's needed now.

I can't say there was any rest for me really, I needed to give our bedroom a decent clean as he's been occupying it for nearly two weeks, had just about finished when the call came in. I must have been very wicked in a former life, I hope I had fun!

Lots of love and thanks for the page turning help, when will the forum sort that out?

Devonmaid xxxxx

User

Posted 22 Jun 2016 at 08:23

Hi,

I hope this helps to improve things for him.

Take care of yourself too. It doesn't matter if certain jobs get left for another day. Use your time for what really matters.

Steve x

User

Posted 22 Jun 2016 at 10:37

Shocking - I am thinking about you both xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Jun 2016 at 12:21

Our poor NHS, our poor patients.

When you complain about the poor dementia patients on the same ward the staff will point out that there isn't anywhere else for them.
Been there twice.
One poor old lady was fed chocolates all afternoon to bribe her to be quiet. Come the evening/night she couldn't understand why she couldn't still have her choccies and cried and screamed all night for them. Horrible for everyone.

Your husband may feel more contented at home now he has some relief, although I know that it puts extra strain on you.

Thinking of you

Edited by member 22 Jun 2016 at 12:25 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 22 Jun 2016 at 13:59

I do feel sorry for everyone involved in dementia (both my mum and MIL suffered), my poor little mum was attacked by a male dementia patient in hospital, I threw myself over my mum to save her from his assault. He was also naked, his poor wife was beside herself as she couldn't control him. There were not enough nurses for the dementia patients, though they were all in the far end of the ward. The other man took his coffee cup, deliberately broke it and charged at the nurse with the cut handle. I couldn't leave my mother at all, who was bed bound with a broken hip. It wasn't safe for her.

When John was in hospital at New year there was a lady crying "help me" all day and night. It was pretty awful for the other sick patients and the staff. Certainly no rest was had by anyone. I don't know what the answer is, especially as the NHS does feel creaky at the moment, but I can't see how it can be good for the other sick people to be kept awake endlessly. I did read somewhere that the medics are not allowed to sedate people with dementia, even though it would make sense to give other patients and staff a break from the endless shouting. The poor person with dementia must feel very frightened too.

Part of me feels like there needs to be separate ward for them, but with the right level of supervision or security. My mum used to speak very loudly and very embarrassing her conversation was too. Another sign of the times perhaps?

I don't know how the medical staff bear it either.

So however tiring it is to care for someone at home, I guess I know where he's likely to improve most now that the medical treatment has been done.

Home is best xxxxx

User

Posted 30 Jun 2016 at 09:21

Just an update. Nothing much has changed here, still having yucky stuff coming out of the penis, still horrible and painful bladder spasms, still can't wear any clothes because they rub and make his penis sore (I've bought him a nightshirt to wear around the house).

I've emailed the consultant again today, we are starting to rue the day we thought the RT would help. Still trying to see the long game but finding it hard.

It's been a month since the last RT, he's still on antibiotics and still in pain. Let's hope a further month will see a change. My BIL and his wife are coming to stay for 11 days (they live in Sweden) today, I'm looking forward to and dreading it by equal measure. Both of us feel exhausted and I feel lots of takeaways coming on.

I don't think all this blinking rain and doom and gloom help, come on summer, we need you!

Love Devonmaid

User

Posted 30 Jun 2016 at 10:30

Oh dear. What is there to say? Let's hope your consultant comes up with a brainwave and quickly! In the meantime your fighting spirit still shows through. Will your BIL be helpful and give you a chance to take some time out? Hang on in there and order those takeaways - nuts to healthy eating!

Rosy x

User

Posted 30 Jun 2016 at 10:46

Hello DM.

I'm so sorry that your husband's infection still hasn't been sorted. Silly question probably, but are they trying different antibiotics? Has he been assessed for what strain of infection it is? They must have done I know but........

The thought of 11 days of entertaining guests at the moment may well seem daunting and too much like hard work but your BiL and his wife can help in lots of ways. Sometimes just having others there in the conversation can be useful, not to mention the physical help they can give.

Takeaways? Well, let's face it, they can't be that bad for you in the short term and as long as your husband is getting his nutrition from somewhere it's got to help.
You can go back to healthier eating when they are gone.

I hope you all have a good time and it isn't all too stressful for you

We can't control the winds - but we can adjust our sails

User

Posted 30 Jun 2016 at 12:18

Dear Allison,

This is such an awful time for you and John, and like others, I am shocked and dismayed by the dreadful experience he had when he was in hospital. It's also a terrible thing to have to cope with UTIs. How on earth could a GP think that 3 days supply of antibiotics could clear that?

It can take our guys trying 3 or 4 types of antibiotics until one finally does the trick,

I do hope another month will see him come through this, infections and pain gone. Keep on playing the long game, please.

As Sandra said, perhaps the visit of your family from Sweden might actually hep you both.

It will take you out of the current, very wearing, daily routine and life will be different and hopefully much brighter during their stay.

Warmest wishes to you both,

George

Edited by member 30 Jun 2016 at 12:19 | Reason: Not specified

B2PCa

User

Posted 30 Jun 2016 at 14:19

D

Perhaps another silly question, have they taken a swab of the gunk and sent it off with a urine sample to be cultivated ?

Try and get a bit of "me" time during the BILs visit.

Thanks Chris

User

Posted 30 Jun 2016 at 19:30

Can't get used to calling you DM so I am trying A maybe I will feel better with that, what can I say other than you are going through a poop time at the moment I think about you and J everyday . One thought that has cropped up in my mind is the years that Trevor suffered with his asthma he had numerous infective Auntie Bs for chest infections I am sure you remember my frantic posts . It was the breathing issues that made him so low when he was admitted with the phenomena and they sorted out the different antibiotics that has made such a difference . Hoping this will be the case for J.
Lots of love
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 Jun 2016 at 20:07

A
In France feeling helpless.
You are both stron and you will get through this. Having family to stay should lift your spirits and give you a break, but you have to let that happen.
Thinking of you
Xx
Mo

User

Posted 30 Jun 2016 at 21:41

Hi DM
Sad to hear things are still not the best for you and Jon. I would be iclined to agree with sending a repeat urine sample and penal swab off, and maybe change in antibiotics is called for.
Really hoping that your visitors will bring some smiles and happy times for you both.
Take care
Lesley xx

User

Posted 30 Jun 2016 at 21:54

Devonmaid, I can't remember what support you have apart from the hospital team & district nurses but if not already done so, it may be time to step up the involvement of the local hospice or Macmillan nurses? I am worried for you that the recent RT is a red herring clouding everyone's thinking and that this horrible problem is due to some other cause - the district nurses are important but not specialists and the hospice staff may have a different way of thinking or at least some ideas of things that might help that no-one else has thought of. They may also be able to sort out the pain relief.

Honestly love, this has gone on too long and someone somewhere must have come across this before.

Hopefully it is John's brother rather than your sister's husband - at least then J can still wander the house while naked from the waist down!!!

Edited by member 30 Jun 2016 at 22:01 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Jun 2016 at 23:08

Hi DM,

I'm really sorry things don't seem to be improving for J. I hope (and pray) that they do.

I'm not expert enough in these matters to offer any useful advice but I wanted you to know that I was thinking of you both.

If I could be of help to you at anytime, I'm not that far away, please let me know.

Steve x

User

Posted 01 Jul 2016 at 04:20

hi DM
cant ass any further advice but am hoping that you get the improvement you both need, you sound worn out and the help from the family arriving will help you get a bit of rest

regards
nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'

User

Posted 01 Jul 2016 at 17:23

Hi all
The latest situation is that I emailed the consultant again yesterday and he phoned John and did ask him if he wanted to go back into hospital, which he refused. So the plan is to see him on Tuesday at the hospital and possibly admit him then (gives me time to arrange it through BUPA if necessary as I'm still a member through work). He did say he had discussed John's case with colleagues and has some ideas he'd speak with us about on Tuesday. We are scheduled to see the oncologist ion Monday, it's been put back twice already as John hasn't been well enough so we will try to go.

He's still the same, can't stay up long, feet and legs filling up with water, bags getting blocked occasionally and bladder spasms. I've bought him a few nightshirts so that he can be decent, he's asking for a nightcap and candle, cheeky beggar.

The infection has been identified at the GP but I don't know if the hospital are aware, I'll check on Monday. The gunk hasn't been swabbed, probably that is needed.

Lyn, I asked if I could ring the hospice nurse and was told yes then no (by John) As we are seeing doctors next week I'm prepared to leave it for now, but I think we do need some support.

Our visitors are here and at least they made him smile. Lucky me, I live close to an M&S so we will be living in prepared food and takeaways as I have no interest at all in cooking at the moment. They have helped to tidy the kitchen and that's the main thing I worry about. I'm sure they'd run the Hoover round if I asked but they are popping to Bristol for the weekend so we have a couple of days of rest.

Thanks for the kind words everyone, it really helps.

Love Devonmaid xxxx
Edited to clarify who said no to the hospice nurse

Edited by member 01 Jul 2016 at 21:21 | Reason: Not specified

User

Posted 01 Jul 2016 at 18:44

Well it's good to hear John's still got a sense of humour despite everything. I couldn't help laughing at the thought of him in his nightgown, cap and carrying a candle!

I do hope the BUPA option works out. At least then he could be admitted and be properly sorted out without the trauma of disturbances from other patients.

Have they come up with any drugs to relieve the bladder spasms? I used to work with children who were bedwetters and they sometimes used drugs such as oxybutanin for 'sensitive' bladders. I don't know if it would be appropriate for John. I'm surprised they haven't done a swab - this has been going on for ages - surely that's just common sense? I'm also curious (nosy) to know who said you can't phone the hospice nurse. I asked our GP to refer us long before the hospital ever mentioned it and I used them as a sounding board. I know they communicated with the hospital once they were involved, but in my mind it was an independent service and we used it as such.

It's good to know the visitors are proving useful. Use them as much as you can - they can go to M&S and get the food while you put your feet up. Or you can go and then sit in the coffee shop while they sit with John. Do take care of yourself though. You'll be no good to John if your exhausted.

Thinking of you

Rosy x

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