4m x 3m Omlet pen, cube, new auto door still boxed and coop light

[Guest]

dad's been home for a couple of weeks now. The dining room has been converted to a bedroom as he can't do stairs. He has a stoma bag and a catheter.

 

Before his op (in April) he was fine, completely compus mentus but since the op, he's very confused, he sees things and talks gibberish. He sleeps a lot of the time but when he's awake he's very agitated.

 

When he was in hospital he went through so much we're amazed he's still here; post op pneumonia, several water infections, c diff about 4 times, kidney failure, blood clot in his leg (those are just the things I can remember).

 

He's had brain scans which didn't reveal anything major, they said he hadn't had a stroke and just had signs of normal old age dementia but, as I say, he was fine before the op.

 

Mum's 76 and finding it really hard to cope with him because he keeps trying to pull tubes out, keeps taking his pyjamas off, throwing his covers off, won't eat properly, spits food out, won't take his meds etc.

 

He's been having diarreoha (sp?) recently and his bag has burst a few times so mum's having to constantly wash his sheets.

 

I try to help as much as I can but I can't be there all the time.

 

We thought, after he came home, he might start to come out of his fug but he seems to be getting worse. The district nurse is no help, mum phoned at 8pm last night because dad's bag had burst again and she didn't phone back until gone 11pm, by which time the carers had been and sorted him out thankfully. All the nurse did was moan to mum about how overworked she was etc etc and didn't offer to come out.

 

He's been given loperamide and cocodamol by the GP (twice now) but the diarreahoa doesn't seem to be clearing up. The dietician isn't a great help either so mum's trying to give him things she think won't aggravate it, she's avoiding green veg and that sort of thing.

 

Mum's getting to her wits end I think, she's 76 and finding it so hard to cope. It's not the fact she has to look after him, it's having to fight him just to get some food into him because he's so agitated. The GP gave her some sleeping tablets to try and calm him down at night but they don't seem to be working. She has to sleep on the sofa to keep an eye on him.

 

We don't want to have to put him in a home so any advice would be appreciated. How do we talk to him to try and get him to stop being so agitated, we've tried talking calmly and quietly to try and soothe him. We've tried being firm with him, we've tried reasoning with him but nothing seems to work.

 

He's been through so much in the last 6 months or so, and being 81, it's not surprising he's a bit do-lally but we thought it would pass, is this it now, will it be permanent, has his mind gone for good? Have we 'lost' him?

 

Is there anything we can ask the GP for that might help?

 

We just feel so helpless.

 

Thanks

[Tessa the Duchess]

Poet I am really sad to hear how things are with your Dad. I can't really offer any advice I have never had to deal with anything remotely like this. However I feel it is really not on that your Mum has to deal with this situation with, what sounds like, very little help from the professionals. I completely understand you and your family not wanting your Dad in a home, but if things continue as they are, maybe you should reconsider for your mum's sake, obviously this is a very difficult decision to make. Thinking of you and your family, big hugs to you.

 

Tessa

[Guest]

i'm so upset because, if he doesn't come out of this, I'll never have a proper chance to tell him I love him again. We were trying to be normal and breezy with him before he went into hospital, so as not to worry him. We thought if we had a serious heart to heart and did the 'goodbye' thing, that we'd just worry him but now it looks like we've missed our chance. He's there in body but his mind's mostly somewhere else.

 

He didn't want the op but we talked him into it as the GP said there was no other option so I think we're feeling a lot of guilt too and wondering if we should have respected his decision.

 

Anyway, I'd best get on, got tons to do and I want to pop round there later.

[Joojoo]

I just don't know what to say hun . I'm so sorry that things aren't improving for him or you all as a family. Does your Mum get the full attendance allowance for him, including the higher rate for nighttime? Would this pay for a carer to stay over at night to give her a break and let her get a full nights sleep? It's a heck of a lot for someone of her age to have to deal with. Him just being physically ill would be difficult for her on her own, never mind if he's agitated and confused as well.

 

I wonder if it's worth you ringing your local Social Services Department? They would be able to tell you exactly what help is available both financially and physically for your Dad whilst he's at home. We found out a lot from them with regards to getting adaptations put in the house for Dad and what financial assistance he could get to help pay for his care etc. His GP and the consultant hadn't mentioned a damn thing it was left to us to find out for ourselves, which is totally wrong.

 

I hope things settle down soon for you. Hopefully it's just a period of adjustment after him being in hospital for so long. Elderly parents are far more difficult to deal with than any number of children in my experience.

 

Lots of Love & Big Hugs xxxxxx

[Plum]

Hello there, sounds like things are really hard for you all. As you say your dad has been through a lot and sounds like your mum is a real trouper.

A few thoughts, please ignore if you want.

While he has had so much wrong with him he has probably been given quite a lot of medicines to counteract all the symptoms. They can cause confusion and act against each other. I'd say the first thing is to get the nurse/GP/or whoever your health contact is to review them. They may well be making things worse.

Next I'd think of fluids and is he dehydrated from loose stools. Loperamide has to be given repeatedly for each time to work, codeine phosphate is usually pretty successful. Sleeping tablets may seem to help for a few days but people develop a tolerance so they dont make any difference and you just get drowsiness in the day which means they dont eat or drink. So may be best asking GP to look at that.

He's had UTIs and has a catheter so this is likely to repeat, has anyone reviewed if he still needs the catheter? He probably had it put in when he had renal failure. If he can pee he may be less agitated without it.

If your GP says its not an acute confusion then he really aught to refer him to your community mental health team who can support you and mum coping and give you advice on how to get dad eating when he doesnt want to etc. You really need support and you would be allocated a CPN.

The other thought is that if it is old age dementia, there are support groups who can share experiences and how to cope.

Hope this gives some ideas.

Hugs XX

 

nb you dont have to tell people you love them for them to know

[..lay a little egg for me]

Oh Poet, how awful and distressing. Plum has given good advice so I've nothing to add to that but to offer some virtual ((((hugs)))). Hopefully if you can get the GP to give a proper assessment things will improve slowly. It is so very hard to deal with people when you cannot talk to them properly because their minds are not working right.

[Guest]

thanks guys.

 

plum- that's really helpful, I'll print that off and discuss it with mum.

 

He's had an assessment to see what care he needs but the equipment they sent isn't suitable for him. He's 6 foot 2" and he's too tall for the hoist etc so the carers can't safely get him out of bed. They're supposed to be reviewing it at some point

 

Someone was supposed to come out and take a sample of his stools on Friday (as per the GP) but "Ooops, word censored!"ody turned up and we can't ring them now til Monday.

 

Mum is of the opinion that she should just be grateful for whatever care they can get but I don't feel it's enough. If you don't push, you seem to get left on the backburner and get ignored.

 

My dad has worked his entire life, from the age of 16 until he retired and has only ever had 2 serious illnesses, both tumours. If he doesn't deserve care then I don't know who does???

 

I'll let you know how we get on.

 

thanks again.

[earthmam1]

Hi

 

How awful for you and your mum

 

I know what it is like (used to be a nurse and had a dad the same as yours)

 

some thoughts

 

1. I agree totally with Plum

 

2. Is it a colostomy or Illeostomy - if Illeo it will be more liquidy - do you have a stoma care nurse down your way (contact via GP)

 

3. Low grade infection may cause confusion agitation in the elderly, especially UTI, he may need longer antibiotics or antibiotics changed.

 

4. GP really does need to do a review. The medical profession can be a right pain at times and you need to be very vocal and stamp your feet.I had to and I am a nurse.

 

5. I found with my dad when he bacame agitated old family photos helped. Just a thought.

 

6. Sometimes (if you have one) the local red cross can help with equipment etc.

 

Hope this helps lots of love xxxxx

[Guest]

Hi

 

How awful for you and your mum

 

I know what it is like (used to be a nurse and had a dad the same as yours)

 

some thoughts

 

1. I agree totally with Plum

 

2. Is it a colostomy or Illeostomy - if Illeo it will be more liquidy - do you have a stoma care nurse down your way (contact via GP)

 

yes but all she does is drop off the new bags, it's a colostomy as far as I know. It's permanent as he's had too much of his bowel removed for it to be reversed. Part of his bowel pokes thru his abdomen, is that a colostomy? Should she be doing more? The problem is, we don't know how far these people's responsibilities extend so if they're not doing what they should, we don't know

 

3. Low grade infection may cause confusion agitation in the elderly, especially UTI, he may need longer antibiotics or antibiotics changed.

 

I forgot to say, DH took a urine sample in last week, not sure if the results are back yet but I think they're keeping an eye on that

 

4. GP really does need to do a review. The medical profession can be a right pain at times and you need to be very vocal and stamp your feet.I had to and I am a nurse.

okay, will try and stamp my feet as politely as I can, mum hates causing a fuss and gets upset if I push things. Any tips on how to approach them and what to say?

 

The last GP that came out on Thursday said she would read dad's notes thoroughly so we'll try and speak to her on Monday I think

 

5. I found with my dad when he bacame agitated old family photos helped. Just a thought.

 

Thanks, I'll try that

 

6. Sometimes (if you have one) the local red cross can help with equipment etc.

 

yes, we borrowed a wheelchair from them, it has to go back next week and hopefully, when dad's strong enough, we have to take him in to be measured up for his own.

Hope this helps lots of love xxxxx

 

thank you xxxxx

[earthmam1]

Hi Poet

 

I have thought some more. Your dad sounds like he was discharged from hospital under the care of surgeons. If this is so I would suggest to your GP that he/she perhaps get his care looked at by the Geriatricians. They are experienced with older patients and are very good sorting out medicines suitable for the older person. A surgeon usually looks at just the operation.

 

A colostomy does have a stoma (bit of bowel coming to the abdomen - a bit like a large rosebud). A colostomy is the large bowel An illeostomy also has a stoma but it is the small bowel (intestine). It all depends were the tumour was and how much bowel has to be removed. A proper stoma nurse should do more than just drop off bags. She should explain about the care of the stoma, diet (the nature of the op means certain foods will aggrevate the output into his bag. Also she should decide which bags are suitable for him and you as a family should be shown how to cope with these things. It is all very new for him and you and your family and it does seem you do not have the support you deserve. As I said you do have to shout loudly.

 

As Plum said dehydation may also be a cause and if his stools are liquidy he may not be getting the fluid he needs. Also as I know he may not want to take any. If this is a problem I tried lollypops with my dad and he loved eating them. Also fruit juice ice cubes helped greatly. My dad would suck on them.

 

 

Do you have pads for the bed - its another thing that helps.

 

If you are worried about him pulling out his catheter dont be. It can be replaced by the district nurse.

 

I really feel for both you and your mum. Your dad will know how much you love him - just tell him so and hold his hand - he will know.

 

Sending you lots of hugs xxxxxxxxxxxxx

[Snowy]

Sorry to hear all this Poet, but very good advice from all the above!

The stoma care nurse should not just be handing over the bags - they should be showing you how to get the best from the bags and help with any problems of leakage. That is one thing I do remember from my ward days - stomas can be so individual and there are so many different products available. But with the right advice and products, you shouldn't be having these problems. xx

 

And earthmam1 has just explained it so much better!

[Guest]

thanks again for the advice guys.

 

mum has been giving him real fruit jellies, if he won't drink, just to get some liquid into him. He also has cup-a-soups and weetabix with milk on.

 

we've got those pampers bed mats for him, they cost a fortune he pulls at them and rips them to pieces sometimes

 

don't suppose anyone knows where we might get them in bulk, a bit cheaper? we have to get them from Asda at the moment. The carers call them 'Kylies' anyone know why?

 

I'll definitely be contacting the stoma nurse then. Lots of people to contact on Monday by the looks of it!

 

I was thinking about the photo thing, even though he's awake he won't open his eyes and pulls at the bed clothes so he might end up tearing the photos so I might leave that one for now.

 

thanks again xxxx

[Plum]

Hi Poet,

Kylies are sheets that are washable. They have a waterproof back and padded top. You can buy them from health centres or your local continence service (NHS). Your stoma nurse or D Nurse should tell you how to access them or google it they are about £15.