Oh god what a hellish few days!

I'm very tired but a need a rant!

On Wednesday my dad kept sleeping in his chair, had a lot of neck pain (would do as head resting on chest)) also had bad back pain and at 6pm I decided it'd be best if we could get him into bed and we did, no dinner for dad, not concerned by that as he has quite a lot of meat on him! 

Thursday pain levels still bad so we gave dad oramorph (very weak morphine solution) prescribed by hospice, slept all day, ate 3 tiny cakes and slept all night (obviously throughout this time many wee breaks) then slept all night

Yesterday Friday, still the same pain, continued with oramorph as prescribed approx every 6 to 8 hours, still sleeping and refusing food. Very tired n non responsive to instructions ie when he wanted to get up for a wee, dad couldn't help or wouldn't (I think couldn't) and then to crown it all the walking stopped!

Dads walking has been v poor for months but yday nothing! It was v hard to get him back safely in the bed but after 75 minutes and pushing and shoving we managed!

In desperation I rang the neuro team at 8am yday and someone rang me back, took the details and said she'd call me back....I also phoned the physio from the neuro team whom said he'd call me back, he didn't! The lady from the neuro team called me back 8 hours later to tell me not to get dad out of bed and there was nothing they could do! I explained dad hasn't (as at yday) had a poo for 10 days and when it comes we will need to get him onto the commode, I said I think we will need a hoist as his legs seem to have stopped working, her response was use a bed pan, we don't have one and secondly my dad is way to heavy for mum n I to get him on one! So she said ok well he'll have to poo in his pull ups! For info his poos, are massive, like horse poo, not joking! At this point I am seething and told her she wasn't listening I needed a physio out to try and help n probably a hoist! Again she rattled on but just kept going round the houses (my least favourite behaviour) so I told her that before I go mental we should end the call, she said no problem she'd call me Monday! I could wring her neck! Who the **** is she telling me that my dad (a very proud man) should poo in his pull ups?!

As I'm sure you all know having a poo for a Psp patient can be like giving birth n is always a v long and drawn out process! There's no way my dad would want that!

So I phoned the hospice, dads wonderful clinical nurse came, new medication, some tips on getting dad out of bed etc and left giving me a hug as I was a wreck! He has also orgabised for the hospice at home team to come in for the next 3 days to help with personal care!

After 15 months of being on the wheelchair list and a lot of mucking about we are still awaiting a suitable chair!

In the meantime my dad seems to be getting worse v v quickly and I'm at my wits end, continually crying (not in front of him) and my mum (love her) seems to think this could be just a stage and dad will be fine well Psp fine!

I'm thinking this will kill me very soon because the toll on us carers is enough to send you into an early grave!

Big hugs to you all and apologies for the bloody long rant!

Happy Saturday I hope......X 

29 Replies

  • Meant to add my mum says I shouldn't get annoyed with the neuro team, wheelchair people etc

    Well do you know what, I can't help it!

    I think 3/4 of these so called professionals are a waste of space and should be sacked forthwith


  • I got very annoyed with the wheelchair people and ended up buying one.  You definitely need a hoist and I can't understand why they aren't getting you one urgently.  If your dad can still stand, a standing hoist will be better for the time being as it is much quicker to transfer him to chair, bed or commode.  Hopefully the hospice staff will get things sorted.  They did for us and phoned the neuro team for me.  

    Unfortunately the bowel problem doesn't seem to get any better.  My husband can sit on the commode for quite a while, only to "go" when transfered to his chair or bed; yes, it is a lot  and being peg fed, is more like a very large cow pat rather than horse poo. I have to put the timer on now and give him 15 minutes as I found any longer, the commode seat cuts his circulation.  I had the shock of my life once. When I hoisted him off it, his scrotum and penis were nearly black.  I think he enjoyed my panic massage though!

    When my husband suddenly lost all strength in his legs just after Christmas, he had to remain in bed for 5 weeks as the NHS in Kent changed suppliers.  They had ordered a full hoist for us but it couldn't be delivered.  

    When in bed now, C doesn't wear pants or trousers but sits/lies on disposable pads. At night he wears an open back night shirt. He didn't used to but I ended up cutting his clothes off him when he "went" rather than spread it to his feet removing clothes....sorry, too much information.


  • No,not too much info, NannaB as we need to know and be prepared. Thank you for sharing ,your advice is extremely useful  as this disease has so many facets, fore- warned is fore- armed. On another note, take care, it sounds as if you are going through another exhausting period. Big hug.X

  • Thanks Robbo, it doesn't help when you have a rotten cold and just want to stay in bed either does it?

    Big hugs to you too.


  • Hope you get a good night's sleep and that your cold gets better very soon .X

  • There's never too much information.  We, at one time or another will be or are going or have gone through 'it' and we would like other solutions.  We all need to get in there and talk about 'it'!B has yet to get to that stage , but I know that traveling and bladder release does not go too well.  He would stand there t the toilet for 10 minutes and  produce no urination. 

     I have found that women are ok if a wife has to take her husband in to the  Women's room.  Loves Gas station et el is a wonderful establishment. they actually have handicapped stalls that work!  Unfortunately not family restrooms, so he had to go in mine so I could help him...maybe that's why he couldn't go ...no

    That was the only place we bought fuel and went to the bathroom (when he would go!) on our 2,500 mile (4,000 km) trek!

    Any way Satt, I agree that with this diseaase (any disease) you can't have too much infor on how to help the patient....

    good luck to you...


  • I posted once that my husband would stand for ages to pee and someone told me not to presume it was a symptom of PSP. I took him to the doctor and after investigation he was diagnosed with an enlarged prostate, very common in over 60 year old men. He has been on medication for it for about two years now and things have improved a lot, with peeing that is, not PSP.


  • Yes I doubled up on Tamsilosin (which is for prostate) the only sure thing is being at home we are back to twice a night and daytime regularity....So much for buying a travel

    trailer and seeing America!


  • Not much help from here except to say I know how you feel! Glad hospice is able to help. Maybe look into catheterizing? Best wishes, Easterncedar 

  • hi

    refer your mum and dad immediatley to adult services they need help asap and they like everyone has a duty of care .

    much love


  • Point one.  Never, ever apologise for ranting on this site.  It's what we are all on here for, to help each other through this ####!

    Glad the hospice are now in control, at least they will know where to get you help.  I would forget the Neuro team, they sound useless.  I once had a conversation with a very unpleasant man in social services, basically at the end HE told me to phone back when I wasn't upset!!! (Not sure which century that will be!) Might be worth a letter of complaint, if you have the energy.

    Time I think, for you to get your GP and district nurses involved! EC has already said about a Catether. Honestly, S having one fitted has saved my life!  No more "wee" runs or soaking wet beds.  Unfortunately he also has bowel problems, so the DN's are managing that as well.  They come in three times a week and give an enema.  It's not pleasant for him, to be woken up and having something shoved up his backside and its very tiring, but it has solved the bunged up problem.  Which was causing other PSP symptoms to get worse, like his ability to walk.  Spent 4 days in hospital, hence this seemingly drastic action, but it's working.  He is a lot brighter now.

    These tears of yours.... Start using them to your advantage!  The DN's wouldn't get involved with S, although the hospital said that they were releasing S into their care, until I started balling down the phone, saying nobody cared etc. Etc, etc!!!  Someone came rushing out, in the middle of a Sunday afternoon and a light was switched on, "ooooh, we ought to be doing something about this!"

    If all else fails, don't forget 999. We are all use to PSP symptoms, but you start telling the operator what is wrong and the computer goes into overdrive.  I'm sure your Dads breathing sounds awful when upset, like S's does.  Thats enough to get you to the front of the queue!

    I am positive nobody takes PSP seriously, or realise how quickly things can go wrong.  This is a very slow disease, but you are always walking on a knife edge and can slip at any time!

    I too, have had to brush up on my plumbing skills, now a dab hand at unblocking the toilet!!!

    Make sure you sit and rest, when the hospice Carers are in, you ONLY help if they need you to.

    Lots of love


  • heady, you are so wise

  • If only!!!

    Lots of love


  • I actually can't reply individually today because I'm in such bad place

    All I will say from the bottom of my heart thank you for listening and thank you for responding


  • You are going through a terrible time. Your beloved father having to undergo all the traumas and indignities of PSP , worrying about your mother and of her being in possible denial and also dealing with your own grief. My daughter was in a similar place some time ago. Get all the help you can. There has been some good advice here. Everyone is behind you, they know what it is like. Big hugs.X

  • So sorry to hear about the nightmare you're having.

    It seems important to let them see how stressed you are in order to get help. I have realised that my normal " I can cope "  attitude does me no favours. I now look for any assistance on offer rather than wait until its really needed.

    Hope things improve now someone is sharing the responsibility with you.

    love, Jean x

  • I feel your frustration I've been in v v similar position with my mum until I realised the key to getting anything is to first get them into hospital and then refuse to  take home until :

    all equipment in place at the home has been delivered and calibrated by district nurses ( v important for bed)

    You have had training on equipment( esp hoist)

    A bowel regime of at least a week has been established

    A detailed care plan is produced including frequency / variation of physio and psych reviews

    I once had to sit in the hospital for nearly 24 hours and watch that it sometimes took three nurses and hoist to move my mum and I got thatdocumented I noted as well as noting times and names myself and then at the discharge planning meeting which I insisted on being present at as I was the primary Carer I referred to notes and made it clear it would be an " UNSAFE DISCHARGE" if the same procedure not followed.

    Sending love and best wishes

  • Ps completely agree with Heady - 999 and when paramedics see it's usually blue light in!

  • Hi All

    Again thank you ALL so much for your replies

    The nurse that came from the hospice was amazing and is coming again today

    I sat here once she got dad in bed like a completely mad person that had lost the plot, couldn't stop crying!

    Anyway she said that the hospice will be fast tracking chc care

    Wow!!!! Really?! I can't quite believe it and won't until it happens?

    Please tell me if you have chc and all you can about it!

    Love and best wishes to you X 

  • Hi, CHC funding means they will pay for all your Dads care.  Be it Carers coming into the house, respite in a nursing home, to full care if he has to stay there.  They also fight the companies to get you the care you need.   Doesn't alway work, they are struggling to get us Carers to come and put S to bed, but at least it not you constantly having to fight battles, other can do for you!

    When we were awarded CHC, the woman in charge, said I wasn't to leave S alone anymore as she was responsible for him, as much as I was!  A bit of a two edged sword, relief in one way, but felt completely tied to the house.  Got use to it now and still take the dog for a walk, if only for a short time!

    When answering their questions, ALWAYS, ALWAYS, answer as on the worst day!  Mention things, even if they only happened once!  I found S playing with his medication from the cupboard once, when I had been out.  He didn't know if he had taken anything, so I did make sure this was noted!!! You are NOT telling tales, you are trying to make sure you are all safe and cared for! Try and get a member of the hospice team to sit with you.  They will know the correct way to answer certain questions.

    Lots of love


  • Thx you darling heady

    Is it district nurses that provide the care at home?

    I've tried googling for info n can't find this out X 

  • No!  You will need to go to a care company.  First Social services  need to "assess" your Dad.  Then it goes to Brokerage, who put out the needs for Care companies to bid to provide the service!!! If you get awarded CHC, they do all this for you.  It seems long winded and it can be, but the fact you are being fast tracked, all this CAN happen in a couple of days. The DN's provide the nursing care you need, catethers, enemas and dealing with any bed sores.  Don't worry, now the hospice are involved, they will deal with most of this for you.

    Your job is to MAKE sure that you get the full help you need, to keep your Dad comfortable and you and your Mum sane!  Don't be bullied into having anything you don't want, or put up with anything less! Life is going to change big style, I'm afraid, so what was not acceptable last week, is a necessity now!

    Thinking of you!

    Lots of love


  • Thank you Heady

    I sooooo appreciate your help!!

    The hospice at home team have just told me it will be them, dn's and carers......

    Bring it on because I can't cope much longer!

    Do they come 4 times a day to you? X

  • No, I get two Carers come in on the morning to shower S. Mondays and Friday's, one stays until 2.00pm.  They are trying to get somebody to help put S to bed in the evenings, but are failing so far.  Wanted to send a Carer at 8.00pm, but as S is a grown up, didn't think he would want to be put to bed that early! Don't want help at the weekend yet!  It's very tiring, have all these people tramping through the house.  Need some time to ourselves. As S has a Catether and has regular enemas, once in his chair, doesn't need THAT much care!!!!

    Lots of love


  • Bloody hell Heady not good!

    I thought chc was the same everywhere in the uk

    2 carers 4 X a day 7 days a week?

    I've been told by the hospice this is what WILL happen....

    I swear to god I don't wanna be messed about on this because everyone ie healthcare people are starting to feel the raff of me and it's not pretty!

    The stupid bitch from the neuro team that I spoke to Friday is coming at 1pm today now because I rang her again this morning!!  She is in for some choice words upon her arrival because I'll be telling her straight DONT ever tell me or anyone else that the patient will have to poo in their pull ups!  Obviously I'll "try" and keep it firm but polite because above all else she is 6ft tall and could easily knock me out lol

    Still no poo day 13/14 awaiting district nurse for enema but fear they won't be here today!

    4 hours sleep last night so still v v exhausted and getting more angry as time goes on

    Big hugs and thank you for your reply X 

  • Hi Satt, I don't have personal experience of PSP but am involved with the organisation on a voluntary basis.   Have done lots of caring both family members x 3 and work in the community.   I really feel for your desperate situation and just wish we could wave a magic wand for you all.    If I was you (and I was also told this recommendation from a 'higher authority' involved with a dementia organisation - make the 'loudest possible noise you can at everyone' and you will eventually be heard and receive the help you need.   Have you tried contacting your local Carers Centre - I don't know where you live in the UK?      NannaB's words of wisdom are really worth taking on board, she obviously has a lot of experience with PSP.  None of it is 'too much information' we are all human !

    Try to just take a few moments everyday for yourself to relax, not at all easy, if you do some deep breathing in the bathroom, it will save your sanity.   This time will pass and life will calm down but do 'rant' on the site - that's what it is for and NOBODY will mind, we are all human.     Thoughts, prayers and hugs, x

  • Oh, I am sooo sorry you and your Mom are having to go through this. I can relate about getting someone to listen to you and getting things done. I have gone through the same thing with my sister. It took me "losing it" at the dr.'s office one day for them to finally react and do something. I used to hold back those tears and cry by myself, until I found out the power those droplets hold. If it works, don't be afraid or too proud to use it. Hang in there and Don't be afraid to rant on this site. We all do it at some point or another. It's good for the soul. 

  • O dear... so sorry for you! Strongs

  • Hi my brother had the same no bowel movement for two weeks his legs stoped moving terrible trying to get him even into the wheelchair did'nt have much of a appetite was also very sluggish, took him to the Hospital E R where they found he had a bowel inpackment, had to remove and he was like a different person besides when it has been that long its keeping all the toxins in your body, glad that's over  hell of a two week period. 

You may also like...