As some of you know,I have been having problems with the district nurses and my doctor is not much better. Being having conversations with him this week,to ask what the plan is now to manage S's bowels. Since the DN's have far more needy patients than S! Basically he told me, that neither he or the District nurses are there to look after people with long term conditions! "It's up to the patients family to arrange nursing care if they need it". So I asked if that meant I had to hire a private nurse to look after S,he said YES! Once patients reach this stage, they ought to be in a nursing home, that's what they are for!!!!
Spitting feathers doesn't really do the trick! My daughter had already put in an official complaint about the DN's and the lack of support from my GP, this was before this conversation. I have spoken to our CHC support team, she is furious, paying for private nursing is NOT their remit, that's what the NHS is for.
I just need someone to help S use his bowels, is that such a hard task? The doctor asked ME, what he should prescribe! After 7 years, or what ever, me who has no medical training has to tell a doctor what medication to give!!!! Everything he was suggesting, needed a large glass of water! What part of S not being able to swallow liquids, does he not understand!!!
All my hard work, trying to give S as normal life as possible, until now is going down the drain. Whether me or S like it, he is probably going to end up in a nursing home, far sooner than needs be, because the doctor can't be bothered to come and talk to us, look in his precious drugs bible, read up about PSP, to find the best solution for a man who bowels are packing in!!! Surely S is not the first person in the world this has happened too, other illnesses must have the same problem!
I don't know whether to laugh or cry, the situation is just beyond belief. I think I must have lost the plot, this surely isn't happening, but each time I talk to the GP, I realise, no, I am NOT imagining it!!!
What I want to know is, what are they doing with people, who haven't got family members to fight for them? who IS looking after people with long term conditions, like PSP? Or is there some secret pill that is slipped into someone's coffee, once they become a nuisance!!! Don't worry, next time I speak to the doctor, I will ask!!!!!!!
Please, if someone is reading this page for the first time, don't think this is the norm! It can't be! It just can't be!!!!
Lots of love from a very tired, frustrated and extremely tearful
Heady
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Heady
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Yes George I agree with you he is a massive Arse, Heady how dare he talk to you like that, just because S is terminally ill, they should be there more for him, our doctor, told me that when I phone up about George his name should flag up on the computer, and I did have a go when they wanted to diagnose a urging infection over the phone, the doctor was here within 45 min. I thought the GP was there for sick people.
Heady things have seemed to have gone from bad to worse for you lately. I still can't believe that the DN is not coming in, to sort S out, I feel so sad that you are having to put up with all this, and try to do your best for S, they need to come and stay with you for a few days, these so called professionals, who take an oath to help people, not to make there lives worse, we are living with people that are sick, terminally ill, fighting for them to get the care they deserve.
I can't complains about our service with the DN they are wonderful around here, if you ring up, they always pop in.
Heady sending you a massive hug, and hope you have so good luck with these uncaring arses xxxxxxx💐💐💐💐
Started to reply and lost it . That's awful for them to talk to you like that .
I know they might see people with worse things such as really bad bed sites but that doesn't make your problem any less important .
It's should be your choice to stay at home and there place to kep you safe and comfortable as possible .
The goes over Xmas when I rang told m they cannot help much now and asked me what I thighs would be best as far as medication. Told me they mostly deal with general coughs and colds. And I could always google something !!!!!!!
The DN s are always very busy when they come. john has INR checks. And occasional bottom checks . Along with constipation problems .
Have you tried the syrup lactulose . That is a bit easier to take than adding powder to water . I have even added Movicol along with lactulose in a smaller amount of water .
I'm in the US Heady and there are elderly people all over, living alone with conditions such as dementia, who naturally don't want to leave home. Here's the rub: to put someone in a nursing home or assisted living facility they can have NO ASSETS. So the adult children allow the parent to live alone unsafely, because if not, the adult children lose every dime of any inheritance!!!!!!!!!!!!! If not for that, the nursing homes would be overflowing. Too many people at least here in the US just dont give a damn about our senior citizens. It's very disturbing. VERY!!!
I'm sorry you and S are having such a hard time of.....I too have had such luck with drs. the last was a couple weeks ago when I told the dr to prescribe B an antisalivating drug. and 5 months ago was telling the dr. that B needed a PEG tube. So basically it's the same here in the US! How is it that they get their Dr's liscence and stare at us like a deer in the headlights......all I can say heady and you already know it, you are your husbands greatest advocate! You know what he needs and when.....God bless the carer. God bless you, Heady!
I know exactly what you mean. These so called medical professionals have a chromosome missing the one that gives you morals and common decency. Do you have a social worker? Surely you need one to guide you through this minefield. I have been fighting for my mother through out her long journey into the abyss that is PSP. I have found some genuine people along the way, and many charlatans.
How to help you? My mum had a fantastic geriatrician who was linked to the local day centre but who also came across mum when she was admitted to a mental health unit due to bizarre behaviours prior to diagnosis. He was a constant in the battle for help as he helped diagnose the PSP. Could you have access to a geriatrician too? Also my mums GP did not care and kept asking me to get her to the DNR category, lovely man!!! Mum also was referred to a PSP consultant at a local hospital. He had a team of nurses and help, so I had access to advice from that team too. My mum is comfortable and has 24 hour care in a care home. I could cry at what she has gone through. The poor people who have no family must fall by the wayside and die, because it takes a lot of fight from the PSP sufferer and the family to get them help and a basic quality of life.
It is a consultant who specialises in illnesses in old age, so maybe I got the title wrong but he deals with Geriatrics. I am in the North East of England but I am sure they will have a Dr who does the same where you are. Hope you get the help you need. Sending love.
Oh Heady! This is awful for both of you. I can't remember if you are in contact with a hospice. If not, ask the GP to refer S. They have made lots of suggestions about medication for C over the last 2 years and contact the GP for me. They have also liaised with the DNs. C is also having bowel trouble. I put Lactulose through his PEG but he still goes 4-7 days without "performing". Before the PEG I used to have to do manual evacuations for him which dislodged the solids and released what was behind but since the PEG there haven't been any solids so we just wait for the explosion. This then goes on for about 3 days and then we wait another 5-7 days with nothing. Last week he was put on a high fibre PEG feed supposedly to help his bowels but it hasn't made a difference yet.
Soon after C was diagnosed, one of the many professionals involved, I can't remember who, told me that in the future C's bowel would probably give up. The natural movement that pushes waste along the bowel slows right down or stops. She also said it's a very difficult problem to do anything about. She appears to have been correct. C doesn't appear to be in any discomfort. If he is, he doesn't show it.
It is a difficult problem but it doesn't make things easier having insensitive medical staff who you seek help from. Our surgery is very good but the doctor does ask me what I think when he makes a suggestion but most things that have happened for C, I have suggested to him and I get the reply, "That sounds like a good idea".
Sending you both a great big hug Heady and hoping a hospice can help.
Hi NannaB, yes S is involved with the hospice. I am going to be ringing our community nurse today, to see what she says. We have NEVER been told by the professionals, what will happen in the future. That's just in the "it's a surprise" category as far as they are concerned. Only thanks to you and everyone else, I am aware what is going on. It doesn't bear thinking about, the state we would both be in now, without the support of this site!
Does C have much in the way of exercise? even if most of the work is done by another (You...sorry) this may help him move his bowels. Knees to chest , one knee at a time massaging intestines starting from stomach down to lower area. bend knees and push body to the knees (push back up so body meets knees...or pull on arms {though this way can lead to strain on his arms and less balance control...and pull you down!}) Just some thoughts.
B doesn't seem to be as regular as his pre PEG days either, but he does have some regularity and I think that is due to keeping his muscles going!
It's hard when they are bed ridden. I massaged my wheel chair bound students and worked their muscles as much as possible. I had one student who laid on the floor all day ....(I was a new teacher....they had her in the corner...I didn't even know she was there...how horribly surprised I was when I found my little darling....first time I'd ever experienced tube feeding...anyway long story short I created an exercise regiment that the PT should have done...I think she liked it! She was never constipated thats for sure hahahah...
So if you can get C's muscles working, you might just find other things start working too!
Hi AVB, yes I do try to keep him and his bowels moving by exercising and massaging. He sleeps in the foetal position if on his side and is curled up tight. It takes ages and a lot of massage to straighten his legs. When on his back he can straighten them but then becomes stiff so I can't bend them. I do a lot of turning him so I can exercise his legs, bent on his side, straight on his back. It's exhausting for both of us but I do it daily. His upper arms are fixed to the side of his body despite daily exercise. He just stopped moving one day. His spine has curved as well. I didn't realise this would happen to him. The Lactulose worked today....oh how it worked!!!!! so he should be OK at the hospice tomorrow. He has just started having a pump feed in the evening which contains more fibre then the Ensure I give with a syringe morning and lunchtime. According to the HENS it should help.
Well done for working out the exercises for your students. They must have been a huge benefit. I hope B continues to keep his muscles moving. Unfortunately, because he is totally immobile, C has very little muscle on his arms and legs now.
Mum's doctors were also dismissive and dis-interested. I wish I had made a formal complaint, but I didn't. I did try to persuade her to change doctors, but she was from that generation that thought doctors were something special.
I got used to doing without her doctors. I had to. It is too hard to care for a sick person when you are in a foul mood. Try to find a doctor you can work with. They can't all be rubbish.
Then I will chime in. We have two great doctors involved, one through the VA and one my guy's GP. Both smart, involved and caring, although even with all that I often bring them something I have learned here that is new to them.
So doctors and DNS are not here for sick people! Sounds about right. I thought community nursing was about allowing terminally ill people to stay in there own homes!! Obviously I'm stupid too! He only needs help with his bowels, you're not asking them to look after him 24/7 what is the matter with NHS, other than I think every department is trying to make a statement about government cuts!
Wish I knew what to suggest you do.
It's a fairly new scheme in our area but some GP surgeries (don't know if ours is one) contribute to something called home first, which are nurses etc, that look after you in your home but liaise with your GP, sounds like you need something like that
Sorry to hear you are having such a tough time lately
I think you are right, everyone is making a political statement! That makes it even worse. How dare they use S to make their point! That's got to be the height of unprofessionalism!!!
Lots of love
Heady
Unfortunately it is possible that a nursing home will have a doctor who is equally as ignorant as the doctor you have now and the nursing staff no better either. That's what I experienced with my father. Nursing home care is not a safe or guaranteed good option so if you have to go down that route take great care. X
So sorry Heady that you are not getting the service that M got and still gets from GP, even the DN's drop into her room as they pass by to pass time of day. Admittedly took a couple of attempts to get a Dr who took notice of symptoms and accepted PSPA information.
You need to complain his (I assume) outdated stupid comments deserve him being removed from a very lucrative job which obviously he is not capable of doing. Get assistance from CAB if needed, but definitely besides local health board (or whatever it is called today) should be on the website of the practise if not your CHC contact should be able to find it. Also you can try the GMC website where you can register a complaint about a doctor.
For constipation I used to up the Laxido from one a day to three if M had not been for 3 days, if nothing after 6 days we added liquid Senna but that can block catheters but was like an atomic bomb on the bowels. If more than 8 days it was an enemma, but I always insisted on DN doing it and staying to help with cleaning. We did get a prescription for something similar to Senna similar in name to the commercially available ducolax I cannot remember real name but will message you when I find it, which did not seem to effect M's catheter.
Be aware that Laxido powder only acts to soften the stool does not excite the bowel, lactulose does the same so only one or other needed.
Good luck and continue hanging in there hope S has a better day. Tim
Hi Heady the stuff is docusate liquid. It softens the stool but also excites the bowel, it works for M. Might need to ask your pharmacist to see if available off prescription otherwise trip to doctor.
The doctor is meant to be writing S a prescription for something today, do we will see what he comes up with!!! But I will remember what you have said. Might get a better response from the pharmacy, than the quack!!!
I found our local Boots very good and informed about prescribed drugs and side effects. I gave them PSPA info card which they were very happy to get. As I always used them they got used to me so they carried out regular checks on all M's prescriptions before dispensing to make sure no clashing or useless items. They even challenged GP on one occasion on an item. Admittedly I always went in at quiet times and got the regular pharmacist not the locum.
Unfortunately you are not the only one having problems with GPs and district nurses. They are not really interested in patients and their knowledge and experience is very limited. If you are monitored by a neurologist, then it is best to ask him for advice and then give instructions to the GP what to prescribe.
As far as bowel movements are concerned, it is a common problem. Caused by limited mobility and diet. If S can still eat normally and has not too much of a problem with swallowing, then giving him each day 5 to 6 pitted dried prunes will do the trick. If swallowing is a problem, then you need to use laxatives such as Movicol. from Norgine. It comes as a powder in sachets for oral solution in about 125 ml of water. Depending on the problem, constipation or faecal impact you give him 2 to 8 sachets per day. Read the enclosure for further guidance.
Another recommendation. If you have not done so already, register S for palliative care. A lot of people think that this is only for the last moments of life. It is not. They provide a lot of services. In Cambridgeshire it is Arthur Rank Hospice who are providing palliative care. They are absolutely fantastic and you can always contact them to ask for help and advice. And if the situation requires it they will also come and visit you and provide assistance.
Unfortunately you need to take the initiative and take appropriate action. Another thing to do if you have not done so already, is to get the personal guide for PSP and CBD from the PSPA. if you have a computer you can download it and print it. It is a document that everybody having to care for someone with PSP or CBD MUST have and read. It provides a lot of very useful information of what to do.
Unfortunately it isn't just immobility and diet, but the disease itself. Constipation is listed as one of the top symptoms of psp. Like swallowing, I guess, the muscles stop getting the message.
oh yikes....I need to read up on this disease I swear my bad memory has forgotten everything I once learned. It's sort of strange the way B's brain has shut down. Aside from balance (which seemed to go first), B has lost everything to PSP from starting with eyes; downward gaze; then speech (more simultaneous I spose); then swallowing; PEG feeding and I suppose next it's the bowels and the health of the urinary tract! Our poor babies.....I want to feel sorry for me and then I think what my husband is losing and I just feel so sorry for him!
My goodness Heady, what a horrible situation, it beggars belief that GP's and other medics aren't there to support and advise. I have terrible thoughts about people who supposed to be in a caring profession and unwilling to help, maybe one day they may be in the same or similar position and how would they feel if treated in this way! These people should feel empathy and do their utmost to help or get appropriate help in place. It's the last thing you want to be doing 'fighting your corner' when you already have so much to cope with. I can feel your pain Heady, I do hope you get the support you deserve but won't hold my breath. Virtual arm around your shoulder, love Kate xxx
Perhaps that's what I'll do. Train to be either a GP or district nurse, stalk a target and make sure I work at the surgery that they use. Just to make sure they get the "right" treatment. After all, I will have good role models, to know exactly how to treat patients!!!
Oh Heady, what an awful unsympathetic doctor you have, and so rude on top of it all. His behaviour is appalling. I can't believe your battle with him. You keep your head up and ask to see a different GP, one with a little empathy. I'm so glad your daughter has put in a complaint. Is it possible to take her or someone with you on your next visit........strength in numbers etc! Good luck with S. I really hope you get the support you deserve.
Quite right. Now, we don't go to the doctors, they come to us. Even for me, sometimes. I told them that there was no way that I could do it. Since I sent them three of the PSP Association GP's guide,marked up by me with B's symptoms and what has yet not been done by them for him, they have been much more proactive.
Is the guy you see the senior partner, Heady? If not, it might be worth a letter to the person in charge. I know you are at your wits end with all that you have to do, could a friend or family member do it for you? It might give him the kick up the backside that he needs!
Heady, so sorry for S's bowel problems. I echo what most of our PSP friends have mentioned already. Kim's bowels will only move somewhere between 5 and 18 days. I've tried lots of things. Often after the first try, it works. But then using the same drug/method, I get no results. I give her senna twice a day and also a fiber powder, every day. After about 3 days of no results, I start trying more physical things to get something to come out. Enemas will sometimes do the job. But digital stimulation works almost every time, albeit not very pleasant. This is probably not for the faint of heart and I apologize if this offends anyone reading this. But everyone should know how to do this or request a nurse to do this for them. WARNING ... this is going to be graphic. A digital stimulation is taking your gloved hand and inserting your index or middle finger (use a little lubricant) into the anus and then produce vibrating motions. Move the finger in and out numerous times and wiggle it like crazy. Almost every time, I get something. Sometimes a major release, sometimes just a little. But at this point, I'll take what I can get. It is a messy procedure, but my wife is worth the effort. She has never complained that I hurt her in doing this.
For females, you can tell there is stool present and waiting to come out by inserting a finger in the vagina and feeling a blockage. I learned this on my own, as I always insert a finger in her vagina before inserting a catheter into the urethra. This allows me to avoid inserting the catheter in the wrong place, which would contaminate the catheter and have to start all over with a new one. I had once asked the doctor if what I was feeling was stool and he confirmed it was. Amazing no one ever told me up front that this is one method of detecting "when it's time to poop". And no one suggested that I block the vagina before inserting a catheter in the urethra. I've seen nurses (both male and female) attempt to cath my wife when she was in the hospital, and they would miss the urethra and would slide it into the vagina. They would then have to start all over. I saw one hotshot nurse miss the target and then retried without starting with a new cath. A great way of getting a UTI. I had mentioned my process to our family doctor and he concurred that what I was doing was the right way to do it. He said there a 3 holes down there and you need to make sure you get it in the right one.
This week our hospice nurse did prescribe a suppository for Kim to take (rectally of course). I gave one to her on Tuesday and it worked like a charm. Going to try one today and see if I get results. It is called Bisacodyl and is 10MG.
Hang in there Heady. Don't take this the wrong way, but I hope you have a SHI*TY day. Big hugs coming from across the pond.
YAY! Just gave Kim another suppository and the finger treatment. Got a couple little turds, but nothing to write home about. My "old Kim" would absolutely kill me for sharing all of this. But it's only among friends.
Stimulating the bowel. It really does work, at least for Kim. When I detect there is stool packed in there and needs help coming out, I will squeeze her cheeks (butt) and help it start its flow. Once it gets going, I let nature do its course.
LOL. I'm the son of a plumber. He always said that in his line of business, you learn to never bite your fingernails. And his slogan was ... Your sh!t is his bread and butter.
Heady so sorry to hear about your experience with "professionals" in the caring profession. Are there other doctors in this GP practice that you could talk to? Don't know what else to say, I'm speechless! Lots of hugs and good luck, maddy
I am going to see what happens with the official complaint. I expect I will have no choice, but to change doctor. Last thing in this world you are meant to do, is speak about a doctor behind his back!!!
I feel your frustration. As I have posted before, nobody does any homework anymore. Doctors and caregivers just dive in with no knowledge or interest in what the patient's disease is or what they and their families are going through.
I want to keep my Charles at home too but we have a limited amount of funds and then I will be in a bad situation.
This is the ONLY place I've found to vent and learn from each other.
It's not funny but I spent the last weekend going to assisted living places to see if that would work. It would but the staff was stunned because they don't know what to do with someone like me, still active, who would want to live there with my husband.
Anyway, get a new doctor, if you can and let me know how I can help.
Oh dear Heady, how awful - just when you need support and care ! I`m afraid I have little faith in the medical profession as a whole ; but that is not to say that some people have been wonderful - truly supportive and caring. However since we almost lost our younger son to a ruptured appendix that was `missed` by 4 doctors for 6 days ( !!! ) ...I listen to what they say, then make up my own mind.
The frustration in trying to get something done, especially in an emergency, can be dreadful. I vividly remember trying to get emergency help for P when he was blocked up and crying in pain - only for the surgery to issue a prescription direct to the pharmacy, who couldn`t deliver for 3 days ! I couldn`t leave P alone, so had to get a son from work to go and buy something from the local pharmacy.
I sometimes wonder if the medics live in a different world to us.
It makes me hopping mad these so called health caring professionals jaunt pass the buck. Our local DN have been totally useless and offer me no advice when I ring about bowel issues. I have to ring this am about Mums catheter a s dreading it. Our GP practice I had to put complaint in and also did an online one on NHS review site. They are more helpful now in a way but still not very supportive. I keep telling people thst lactulose doesn't agree with Mum but just get told to still give it with no alternatives. I demanded for a referral to an incontinence advisor in end which I'm waiting for appointment to come through. Sorry you aren't getting the support that is needed. It makes an already traumatic experience so much worse. X
By the sound of your reply and several others, this IS the norm!!! I am presuming you are in the UK, have you heard its "end of life awareness week"?. Or words to that effect. They are trying to get people to talk about death and how and where they would like to be, when checking out! One thing is for certain, not in the hands on the NHS!!! Or should I rephrase that, in the hands of the NHS, because, that is sadly lacking in S's case!
Oh ketchupman and Heady, your convos have cracked me up. Some of the things we have to talk about would make a non psp person's hair curl, but on this site it's a must to share experiences and tips for us all to learn from. Take care guys, love Michele xx
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