When I thought it couldn't get worse it did.
Last night my husband s bladder joined his bowel in giving him no warning, he is now totally incontinent. I am waiting for the chemist to open so I can get him incontince pants, , pads, whatever. Where the hell do we go from here. Practically I can't get a double duvet in the washing machine!
I'm so sorry for the shabby way your husband is being treated, better still, not being treated. I understand he wants to stay at home but wouldn't it be better to call an ambulance and get him to hospital and see what they can do for him?
Have you had a discussion with your doctor about palliative care at home? The local Social Services Department at the Council will also have elderly care resources to help you at home.
You should get help with the incontinence side of things since the pads, pants and other items are provided on prescription by the NHS (and should even be delivered to your door) - your district nurse or practice nurse should be able to get this sorted for you.
Katie
As Katie says there are home care companies who can help you with personal care, laundry etc. You can do it via GP or go direct. Also the NHS supply basic continence aids for free, get the phone number from the Internet or your GP, you can self refer. There are bed protectors and mattress protectors you can get from care shops or online.
So much watery blood on the bed pad - no doctor on duty. He doesn't me to call 111 as he thinks they will take him to hospital. I was at the pharmacy when it opened to buy bed protectors & incontinence knickers. does bladder failure usually come on as quickly as this.
This sounds terrible; maybe he should go to Hospital temporarily hopefully ; then as has been said get palliative care at home as soon as possible. The situation sounds as though he needs to be in at the moment; though i understand his not wanting to go; but maybe they will actually do something for him, and then things can be arranged for him to return home with proper help and assistance for him and you. xx
Will make an appointment with a doctor tomorrow, he is bleeding quite a lot now. I know, or think he will have to go to hospital. Or will she say that she can't do anything until she gets the test results. I don't want to see that stupid female, I really feel like smacking her.
Given the breakdown in the relationship you might perhaps ask for a different doctor to do a home visit. There should be provision for out of hours service if necessary.
nhs.uk/NHSEngland/AboutNHSs...
If your GP doesn't have an out of hours service then you should look here for your local area.
nhs.uk/ServiceDirectories/P...
It needs someone to assess what can and needs to be done and get the wheels moving accordingly but he can't lie in bed just bleeding. If the usual doctor can come by assess and make a decision fine - if she's insistent that it can await test results and the situation is manageable at home and you don't agree get a second opinion from a different doctor. If necessary contact a different practice and speak to the practice manager about switching.
You think I should ask for a home visit. I thought to wrap him up & take him to the surgery. If I ask for a home visit & they send this woman again I am back to square one. It was early October when I first took Brian to see her. He was complaining then of stomach pains. now he is incontinent & bleeding. i am angry, I never thought to see such indifference & neglect.
If you can get him to the surgery then take him in - and if poss see a different doctor. If you don't think it can wait - depends on pain and bleeding - ask for an urgent home visit. There are GPs on call.
It's a difficult situation - he's clearly deteriorated quickly but it looks like you're in a situation that is difficult to square - he wants to stay at home but is clearly in a bad way, the GP doesn't seem to know how best to proceed in the absence of test results - and presumably is aware he doesn't want to go to hospital and you're stuck in the middle trying to navigate.
Sadly you can only do the best you can with the situation you've been handed, but getting a doctor to decide what is realistic would be a sensible next step.
I would advise though that should the GP be under the impression that your husband wants to stay at home and that you can cope that you ensure you both agree on what that involves.
Best wishes.
In case it helps I will add one thing - as there is a bit of a chasm between you and the doctors I would suggest that you are upfront with your expectations of what they can or should do and get them to address those explicitly.
I've not come across many indifferent or callous people in the health service but sometimes they may make assumptions that are incorrect or need to be explained.
Again very best of luck. I know this is a horrible situation for you and I wish you the very best in coping with it.
If he is bleeding, you need to get someone to look at him, if its her and she still think he is out then he needs to go to emergency care. He could go into coma from bleeding. Sometimes we must lead these health care workers, you'd think some of the things you see they would be trained to not ignore us but to listen, take us serios and explain. It can be hard to get some of them to take you serious but in my experience if they see I have given up on them then they really do nothing. Good luck.
Catfish this post has just popped into my notifications of thread updates, but I suspect the original poster is no longer on the forum. It was about 4 months ago Anya was asking for help and her husband was already pretty ill then. I don't think she has been active on the forum for a long time.
Hi, I realized that but not until I posted. Wonder why there are such old posts, then again, there was valuable information to hear even though its an old post.
Only the original poster can remove posts, unless Admin decide they are against the terms and conditions of the forum. It was a sad story, and the patient's wife got very frustrated by the problems of our NHS being somewhat slow and also the problem of not very 'joined up care' between agencies. Last we heard she was looking for a home care agency to come help with washing/dressing etc. But then the post stopped so the assumption is either the patient died or the poster felt she no longer needed the forum.
I'm so sorry..dear god, why have they not sent palliative care..maybe it is time to call the newspaper, or the TV press?
How wretched, I cannot believe NHS would allow this....
Thinking good thoughts and hoping someone does something soon
Thinking of you.
I myself am back in hospital since Friday and would gladly give your husband my doctors and nurses to help him
Xxxxxxx
Kimberly
I have called the surgery, they are sending a doctor to see him. Mr X, I expect them to make him comfortable. At no time has anyone suggested he go to hospital, if they had he would have gone. He doesn't want to die in a hospital bed, I agree, better to be at home if possible. I had to plead for strong painkillers, I had been told to give him the codeine Iwhich I had been prescribed for my arthritis. Last Thursday he was given co codinal. This has been going on since October, by now I would have expected the tests to have been done & the results scrutinised. I am 74, I have lived in a few countries, never have I come across such indifference to a very sick patient. I am exhausted, not with looking after my husband, but trying to get care for him.
It has been suggested that as they think he I'd dying they cannot help. Yes, I think he is dying, but would like someone to tell me what to expect & what I should prepare for. The blood from his bottom was unexpected, I had to give him sanitary towels, she should have said that it may get worse, start bubbling out accompanied by pain. She saw the blood on his sheet last Wednesday, The sudden continence we were not prepared for, couldn't I have been warned, I expected better from the NHS, I think they should have lessons in communication.
To be honest at this point I would be inclined to ring 999 and have an ambulance sent out. I don't know what the paramedics are likely to recommend but at least you've opened another route to medical care. If your husband insists on staying at home but in need of attention I imagine they could then arrange this.
I can only imagine however that in this state your husband would be more comfortable in a hospital.
Oh bless you 😘😘😘 you must be absolutely exhausted xxxxx I am not sure about the bowel joining the bladder ?? Or is it coming out both ends - doubly incontinent ?? DO NOT take him to surgery - let them come to you - also ask for district nurses to carry out a continence assessment and medication management and pain and symptom control (you have to tell them this as they stupidly don't just come out with it) - tell GP you are finding it difficult to cope and ask for carers assessment also (if you take him to surgery they will think he is well enough to go out etc) you have to be very tough 😘😘😘😘 ask for a specific diagnosis - if they think he needs to go into hospital then make sure that they are aware his wishes are to be at home if this is the end 😓😓😓
They can provide carers to assist with the incontinence etc district nurses can give 'stronger' analgesia - cocodamol is codeine and paracetamol and is not strong enough - they would need to go to next level of opiates xxxx if there is any question of cancer - ask for Macmillan nurses to visit also (not sure if all hospitals do this) there is things like 'continuing healthcare' CHC which they can put in place for a number of weeks which entitles you to care at home - please don't do this by yourself - you are having to cope with to much bless you ❤️❤️❤️❤️ you can message me for anything - my nursing knowledge is still in there somewhere and I will help as much as I can - lots of love and hugs 😘😘😘😘😘😘😘
Thank you, a doctor is coming this morning. The thing is that we are still waiting for a diagnosis. Tremendous weight loss of 12kg, going down, pains in stomach, no appetite, vomiting , blood from bowel, now double incontinence.. The only time cancer was mentioned was as the doctor ran down the drive last Wednesday. She said he wouldn't survive cancer surgery. But she is still waiting for the tests, which he still hasn't had because of his blood pressure. I bought him incontinence panties for men yesterday, they work well. I do have two cleaners, so physically I'm not tired, mentally I'm exhausted. I feel such pity for a proud man, a soldier, reduced to tears.
The head doctor in the practice came. I got the feeling initially that I had been described as a difficult person - then he saw & examined my husband. He is arranging tests today, privately if it is quicker. He remarked, bowel cancer. I gave him the letter from the hospital dated October & sent to the silly woman. He seemed rather angry at the neglect. Maybe now we will get answers, & some treatment. Not miracles, just to make hi. Comfortable.
Finally 😘😘😘 you should feel very proud of yourself for fighting for your husband ❤️❤️❤️❤️❤️ hopefully they will now give him the treatment he deserves and you can find some peace ❤️❤️❤️❤️ love and massive hugs xxxxxxxx
I became happy too soon. After phoning a couple of private hospitals for the colonoscopy all staff are away until the 7/1. I called the surgery to see if I should try further afield. A telephonic conversation has been booked on Thursday. I have lost heart. My husband is double incontinent hasn't eating for days but is vomiting. The NHS needs shaking up & put in a bag, preferably in a fast flowing river. I am exhausted, I don't know where to go from here, I need help bath him.
Whaaat ???? What did the GP do then ? - did he say he needed the colonoscopy ?? It's quite invasive for someone poorly 😓😓 did you ask about any of the things suggested ?? XXXX bless you - I really feel for you ❤️❤️❤️ when I had similar with my hubby it felt like no-one was listening to me 😫😫 I ended up shouting at every appointment (not the best way to go) but I said - I need to shout because no-one is listening to me xxxx I don't know what more to suggest - could you not telephone District nurses yourself ?? Or have a telephone appointment with practice nurse - tell her your concerns - luckily if she's a good one she will step in and get the ball rolling xxxxx honestly try 'carers service' they have people that can help with phone calls and sorting stuff - that would be one less thing for you to do ❤️❤️❤️❤️ I have been thinking of you both - love and hugs xxxxx
Oh I am glad I am not the only one that gets a little shouty in appointments or with doctors that don't listen. It's frustration and if I didn't shout I would cry and sometimes that's worse! 😉
Thank you, they, the surgery, need shaking up. A district nurse has been organised, but I still have to phone.he needs much stronger medication, it is being organised. I put a fentynal patch on him last night. I used them for arthritis,
The heart nurses who came yesterday were great, they also are demanding he get strong medication & a district nurse come to help bath him.
Hi there. Been thinking of you and your poor husband. The help that you have been given is so poor and slow. Glad the heart nurse was good though.
Unfortunately I have to agree about the colonoscopy, they really won't do this if your husband is not stabilising. Had all this with our aunt.
Would Brian even be strong enough to leave the house for an outpatients appointment now?
Your Gp surgery needs naming and shaming for their behaviour. I thought ours was bad! This were recently good with my husband but it still had taken him 2 days to get an appointment and he had a kidney infection which was on sepsis level once finally at hospital!!
Anyway keep us posted if you can. Please take care.xx
No, I don't think he will leave the house again. He is sleeping most of the time now. I have asked for a district nurse to help me wash him - I have body/spinal arthritis & can't bend. Happy to name but have they any shame, I don't think so. I asked for stronger pain killer, there is a prescription waiting at the surgery, I don't want to leave him alone to collect it & take it to the pharmacy then wait. I put a fentynal patch on him last night,to a ly the wrong thing to do, I hate to see him in so much pain.
I don't know I phoned the district nurse, left messages. The bloody doctor hasn't sent a script to the pharmacy & the surgery doesn't open until 2pm. Brian needs incontinent knickers & protective sheets. I really have to go out but don't like leaving him in case he gets out of bed & falls. His blood pressure is very low.
Gosh what a terrible situation they have put you in. I agree he shouldn't be alone, such a shame I am not local I would go and get supplies for you😳 I do wonder if there are an voluntary schemes in your area that could help?
Fingers crossed the district nurse gets back to you asap.
Anya,
If I have read correctly, you're near in Southampton.
At Southampton hospital they offer a volunteer service for people like yourselves, what about trying this lady:
voluntary services co-ordinator, Gina Henderson on (023) 8047 5312 or email us on Gina@cmhcharity.org.uk
They have a community service, so we'll worth a try.
Xx
Thank you. I had to go out to get prescription & his stuff,. Someone from district nurse called whilst I was out, there is a phone beside his bed - it seems they don't do it now????????!!!!! What I don't know.
Pharmacies do home deliveries if you ask them, just ring and ask for medication to be delivered and you dont need to go out for it, they do it all the time for housebound patients. Care companies are numerous and could start a care package for you tomorrow to help you with bathing once they have done a risk assessment. Like Bluebird Care bluebirdcare.co.uk/southamp..., just ring and ask. There is an hourly rate but you can get whatever care you want at the time you want instead of hoping the NHS District Nurse can do a bath. Its very unlikely they would do personal care like that, they normally do things like nursing care in the home, dressings, injections etc. For personal care its now outsourced to care companies, such as those listed on the CQC website. cqc.org.uk/
Anya xxx I read above your near Southampton (I am in Bournemouth) I have a lovely friend who is a Marie Curie nurse in Romsey ?? Is that near you ? She would help or get someone on the case of you would like me to contact her ? 😘😘😘😘 if it is something you think would be helpful drop me a message with your hubby's name and your phone number ❤️❤️
Thank you, I phoned a private caring company & Social Services, who ever gets back to me soonest.
Thank you all for your help & advice, it has been so appreciated. I phoned Social Services for advice hoping they can re commend a care company, there seems do many.
Yes it is difficult to know which company might be the best unless you have personal recommendation, but as time may be short you may have to go with whoever you have a gut feeling about being suitable. Age UK may be able to hint which are better thought of locally, though they dont provide 'personal care', mainly cleaners and home help i think. I think your best guide to suitability will be your gut instinct as to whether you like the care company manager or not. Also some companies employ older ladies who have gone into the job having looked after a relative themselves and others employ young girls fresh from school who are possibly testing out whether they want to go into care or nursing careers. Remember its unlikely any of the care staff will be nursing trained, they should have a Health&Social care basic training but it doesnt qualify them to do things like dressings, injections, IVs, oxygen though they can administer medication that has been prescribed. If your husband is bed ridden the care company may recommend 'double-up' calls as one person on their own should not move or lift him. They may also recommend some moving and handling equipment such as slide sheets or even a hoist which you should discuss with them at the initial visit. Best of luck and i hope you get some help quickly.
1.15pm. I have been phoning since 9am trying to get someone to come & help. No one is interested. The spiel from the private companies, we have to send out a team to assess you, that won't be until after Xmas, or the best offer is next week. Since October I have been banging my head against a brick wall. Forget caring, no one does. I am happy to pay £50, £100 an hour, I only want someone to bath him & make him comfortable. Social Services advised me to get a 2nd opinion from another surgery. How do I do that.
How many companies have you called? Yes they will have to do an assessment as your house becomes a place of work for their staff, sounds stupid maybe but they need to make sure they can do the job and keep your husband safe and their staff safe, even basic things like lighting and exits and trip hazards have to be checked. Next week is only a few days away, its not that they dont care its probably just finding a slot in their diaries. Care companies work 365 days a year, even Christmas Day is a 'normal' work day. Dont give up, keep trying, and difficult though it might be not to sound stressed or frustrated on the phone try and sound like the worlds best employer when you speak to them. They work for a set hourly rate, so offering more wont make things happen faster, lol!
Is there any local 'home care' agencies ??
They will cost a bit but will probably be able to attend almost immediately - please don't advertise and get just anyone - at least if you use an agency they will have had some sort of training and will have been checked xxxx shame I am not nearer - I would have come and helped you 😢 ❤️❤️
Just had a quick look on Internet - have you tried these ?? 'Access Care'
01264 326 505 - they look quite nice and also said 'urgent' xxx
I have tried local agencies, no one can come out to 'assess' until next week or after Xmas. He is going down so quickly now, losing hearing & mental capacity. I honestly don't know what to do, no point in phoning the doctor, he is not interested. All I wanted was to give him a dignified end, that isn't going to happen.
Oh Hun xxx you have done so well for him 😘😘😘 would you like me to speak to my friend ?? Or if you really feel that this is happening quickly - speak to the local Macmillan and they can help 0808 808 00 00 ❤️❤️❤️
I have tried Access Care, they don't operate in my area. I can't have MacMillan because there is no formal diagnosis of cancer, ther is no formal diagnosis as his heart was too weak for him to have the colonoscopy. Two doctors have said bowel cancer, neither have the balls to tell MacMillan. We are talking about
Drs Cole & Milford at Locks Heath Surgery. forget this caring society, it doesn't. This morning my cleaning lady found me in tears of frustration, she started phoning, she got no where either. I could 999, he would be taken to hospital, IOh, I also tried two local nursing homes, they don't take terminally ill patients
Have you tried all of these: homecare.co.uk/homecare/lis...
Home Instead Senior Care (good but top end for price, run as a franchise like many of the larger ones) 25B, Katana House, Fort Fareham Business Park, Newgate Ln, Fareham. 01329 282469
Bluebird Care (Fareham),
2-4 West St
01329 822544
Helping Hands 0843 634 6745
Mears Care Unit F2, Fareham Heights, Standard Way, Fareham 01329 222100.
AQS Homecare, 10 Freemantle Business Centre, Millbrook Road East'
Southampton Tel: 023 8063 6777
Nurse Plus
Newcross Health care
etc
there are 22 in the link i've posted
Crestar Healthcare Services say they are a nursing agency providing care in the home. Their emergency number is 07447512127
This may be out of your area but Rowans Hospice has a website with contact details for different palliative teams in the Hampshire area
"To contact the Community Team for Portsmouth City call 0300 300 2011. This team is employed and managed by Solent NHS Trust and has its office base at Jubilee House, Cosham.
To contact the Community Team for the Southeast Hampshire area call The Rowans Hospice 023 9225 0001. This team is employed and managed by Hampshire Community Healthcare NHS Trust.
To contact the Hospital Team for the Queen Alexandra Hospital call The Rowans Hospice 023 9225 0001. This team is employed and managed by Hampshire Community Healthcare NHS Trust.
I have spoke. To Home I stead, very helpful, she is going to try & help, they are very busy, seasonal. My husband story, she has heard it before, he isn't ticking all the boxes which us why we can't get help from the doctors nor Man illam. I spoke to ?Rowan hospice, they can't help doctor referral again. I would like the bloody doctors to be I. My helpless shoes for a few days. Bolly, thank you, hopefully Home instead will call back, their office is just around the corner
Well done Anya, you are doing so well in such an awful situation that the healthcare system shouldn't put anyone in. I really hope Home Instead come up trumps on this one and you get the much needed support, so you can then concentrate on being by Brian's side and comforting him as he drifts off.
Keep hanging in there you are doing fantastically and your love and determination is immense.
I think I can say we are all here for you in a cyber capacity😉
Xx
Anya, how are you both?
Not long now.
Still feeling lost but frightened now!
F 2 fibrosis, what now.
Newbie update and now very scared.
