I've just been catching up on the latest posts and it seems we are all going through the same thing where pee and poo is concerned! I seem to spend most of the day shuffling backwards and forwards to the loo, cleaning floors and carpets, in fact I've just had to break off from writing this to clean up another mess! Doesn't matter whether K sits or stands he always misses! I'm considering taking the floor up in the downstairs loo as I'm sure it must be getting underneath it!
Someone also mentioned about all the offers of help from family and friends. We are very lucky in that respect as we have a very supportive and caring family, really good neighbours who help me with little jobs around the house and friends that visit now and then. I think some friends find it difficult to see K when the haven't been around for a while as I suppose they notice the decline more whereas when you're with it 24/7 it seems more gradual!
K is not having a very good week so far, he's very slow and can hardly walk, last week he seemed a lot better though, one day at a time is all we can do! Making the most of the better days and trying to be patient on the not so good ones seems to work most of the time but by 10'0' clock in the evening my patience is running a bit thin! Especially when it's like last night, K had me up and down all over the place, wanting to do his exercises upstairs, then wanting to come downstairs into the kitchen to do his chair exercises then (guess what?) wanting the loo again! All this in the time I usually manage to kind of relax for an hour or two in front of the telly! I don't understand why he left it all till that time but I keep telling myself it's not him, he can't help it whilst gritting my teeth and muttering some choice words under my breath!
There, rant over for today!
Feel better for that!
Take care everyone,
Love and hugs....Pat
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Pat I now the feeling, always got the mop bucket and mop ready the clean the toilet, what can we do we have got a tiled floor in the bathroom, so it is a bit easy.
Yes George is always calling me to do different things, then while I am doing what he asked me to do, he will ask me to do something else, yes Pat on day at a time.
We have got lovely neighbours, but don't like to take there offers of help. Children live near, so a bit of help there. Apparently we are having a family meeting to see what they can do for me, in the way of help with George, that is next week. Also still trying to convince George that the 5 of us should go to Cyprus, maybe the last family holiday, but he does not want to go.
I am sure it is not them just this horrible PSP, have a lovely day Yvonne xxxxxxx
You'll never believe what's just happened, Keith decided he would like to sit out in the garden, after taking him out via the garage and all round the house (to avoid some steep steps we have got leading to the patio!)
Anyway got him sat down comfortably with a drink and something to eat and guess what, after 10 minutes he decided he needed the loo AGAIN! So shuffled all the way back with him, sat him on the loo and now waiting for him to come out. If I ever get chance to sit outside today the sun will have disappeared and the evening nonsense will no doubt start again!
Hi Pat, how well most of us can probably relate to your post. I flipped the other day and said, " My whole life seems to be pee, poo, blood and phlegm". Guess what came through the door the next day....my NHS bowel cancer test packet, or poo sticks as Colin and I used to call them. Now when I have cleaned up for the umpteenth time I say, Oh papabap. ( pee and poo and etc etc.)
So far, my husband has been able to clean himself. He has had two poo incidents but both times I was sleeping and therefore unaware. He made it to the bathroom but not quite. I was amazed when he told me that he had cleaned it all himself.
Today he told me he is having trouble reaching back there to get wiped well enough. He is a big guy and that combined with the loss of coordination and strength I think is the problem. I bought some of those wipes. I thought he could try those and maybe have better luck, instead of a washcloth. I kind of wondering how in the world I will be able to wipe for him. If he's on the pot and cannot bend over without hitting the floor.... I'm just trying to figure out in advance how to handle this.
something like a footstool that he can bend over and grab on to for stability
AVB
B is interesting in that even if he only has a touch from me on his back , it secures him and he does not fall all the way over...it haas to be preventative, once he falls ...get out of the way ...but tot keep him from falling can be a simple as just a touch on his back and he seems to get an immediate sense of where he is at......
I find that when that happens the best thing is to stand them up and wipe them, we have put two grab rails at either side of our toilets and it does seem to help!
I also have bought wet wipes, it's much easier and more hygienic!
Keith doesn't like me having to do that but on occasions there is no other choice!
He does use a bottle at night because several times in the night he has been unable to get to the loo in time
Pressed the wrong flipping key again, I'm having a bad day!
I won't tell you what I call his bottle because he can even miss that or spill it all afterwards! It does stop the danger of falling though which he used to regularly and I've found him stood in the middle of the bedroom unable to get back in bed!
Speaking of missing the toilet. I kept wondering why his bathroom smelled so badly. This is really gross so prepare yourselves. I usually stand with my feet far apart when I clean toilets so the chemicals don't splash on me. Well apparently that's how I failed to notice this little rug in front of his toilet was soaked with pee. And I do mean SOAKED. I had to get something to carry it in and I threw it in the trash!
Then, silly me, I put another rug there because I didn't want his feet to be cold when he was there. Only this time I checked it. You guessed it! I can no longer put a rug there at all. Now every time he goes, I go in there and spray the cleaner on the floor and mop it. So, if he can't hit the big round toilet, I'm sure a bottle will just be gallons of fun!
Yah we no longer have an area rug.. Still smell like pee though I do try to mop it down on a very regular basis. I think it's between tile and sub floor...It will just waft its way into our presence without any actuall product . I stick something in the side of the bowl to reduce the odor you make do I guess.....
Pat just like George, we are all in the same boat, I also brought the Andrex wipes, I have to help him. He has got this new thing that he does, he keeps calling out help me help me, I am standing next to him, like he is going to cry, all this started last week. Feeling exhausted, he has gone to bed, he won't get up and have he's dinner, what should I do, I am at a loss of what to do.
Yes another thing, make sure he is drinking enough water. You can lose a liter a day in fluids....you, we all have to replace that ....they say 64oz a day thats probably a liter sorry don't know.
Yvonne in your shoes I think I would let him sleep it off, it's so distressing this horrible disease, it's like you don't know what they're thinking any more! Try not to worry tonight, he won't starve to death because he's missed one meal, easier said than done I know too well, he will eat again when he's hungry, maybe he's overtired with all the excessive heat, Keith is the same he just keeps falling asleep!
Try to get an early night yourself and worry about tomorrow when it arrives, easier said than done again!
I am thinking of you and just want to give you a big hug, how I wish something could be done to cure this awful disease, Keith has just rang his alarm again, think this may be yet another trip to the dreaded loo!
Pat it is so hot, not sure anyone will sleep tonight, George got up and had his dinner, still keeps saying hel me help me, and I am right next to him, if anyone heard him they would think I had left him, to cope by himself. Let's hope it is not so hot, weather on tv saying not so hot. Big hug back to you Yvonne xxxx
Speaking of armpits, after D's shower yesterday he asked me what is this? Both armpits have bright red rash marks in them. I just checked him and they are still there. I had put Cortizone on them. Think I'll try some Aquaphor unless someone has a better idea?
this heat is an enemy for us . john is completely wiped out . I am not much better myself .!
he has been calling Rita all day checking I am near , when I bend over to ask what he wants the words won't come . when he does manage to speak the wrong word comes out , It's a lot of guess work but after all this time I can sometimes come up with the correct word.
pit grab rails very where you think you need them I have them all over the house But he isn't mobile at all now so I am using them lol
make life a little easier by seeing if you can get sheaths and convenes that saves a lot of journeys and make it safer.
if you live in the UK so you know you can have bags from your local council for bodily waste . stops any toilet blockages. . if you do happen to get a toilet blockage . a bowl of soapy water helps flush away more readily .
C is having a good period at present, regarding poo. I can cope with running after him with the mop [ he cant see well enough] but the poo !! I finish up running around sniffing like a bloodhound ! I can hear myself getting ratty as he keeps moving and spreading it all over.
At present he keeps wanting to know everything I'm doing.
Its the feeling tired that makes it all worse, isn't it ? Plus knowing its not going to stop.
I say it's a bit like having to get on and off a bus or a roundabout . No sooner you have cleaned up amd not had a chance to at least lift your back up and take a breath you hear a voice calling your name again .What if we all change our names for a day . Wouldn't be any help though because we would fret all day .
It seems that all sufferers are the same where poo's concerned, do you think it may be because they can't look down very well? K once didn't make it to the loo in the bedroom and the carpet was covered, he had walked through it! I never thought I'd be able to clean it but I managed somehow!
I know what you mean about sniffing like a bloodhound, I do exactly the same thing, must look really funny if anyone was watching!
Good job we can all manage a smile now and then, it's so hard coping with this illness!
Yes. I think its being unable to look down so he doesn't see it. He also seems very tentative cleaning himself. I can hear myself sounding quite "nannyish "
This is one element I really struggle with when caring for my mum. The pee I can generally cope with, frequently changing clothes and emptying commodes I've become Desensitised too now (I really struggled at first, I've never had my own children so no prior experience!) I got a bit ratty when I went in during the night and stepped foot first into a sodden pair of tena pants mum had thrown into the middle of the floor during the night. Not the best way to startle a sleepy person awake! But the poo ... I really struggle with this!!! Mum can't see properly and has lost proper coordination of her right hand which makes wiping difficult. But also as she gets severe constipation and generally refuses to take her laxatives (she's on a huge number of tablets already) she really struggles to have a movement. But she tries to assist things with her hands then promptly gets everything in a mile radius smeared. I lost the plot a bit yesterday after such an incident. I feel really bad about it now as mum told me afterwards I made her feel so small.. but I just freaked out when I saw the mess everywhere and when she ignored my direction to stop waving her hand around and to let me shower her. I also have a mild OCD for cleanliness and germs and these incidents send me off the richter. I feel terrible for shrieking at my mother for things she can't really help and things I should just try and act normal around so as not to belittle or embarrass her. It's just so hard to be continually tolerant and patient when you're exhausted and frustrated with everything! Sadly I don't have nice neighbours who help out and despite having 3 siblings it's just me and mum battling the PSP. Anyway, today's a new day! Coffee and a shower and I'm sure I'll be back ready to help mum battle on xx
Thanks Jean, I appreciate your kind words. A few people (including my sister!) have said to me 'oh it's just like having a baby' .. Um, no it isn't! I don't have any children but I can easily tell it's very different! Emotionally it's totally different and a baby doesn't weigh 11stone, choke frequently, have large number of pills to swallow, repeatedly wander around unaware of the falls risk, need continence assistance etc etc! I have the utmost respect for all carers, I'd never fully appreciated what a difficult role it is, but also an ultimately rewarding one. i hope you are getting lots of support and managing, I'm sure your husband really appreciates everything you do x
only the other day I though to myself , This is the hardest work that I have ever done . on top of it don't get paid . other than know I have and am doing my best and will have no regrets .
Oh baby, I'm sorry. The shit I can handle but the s*&^% people are really difficulty for me. I just as soon not have them around.....they express all the work they did when they helped B off the couch. Meanwhile I ve cleaned the bathroom again try to get blood from the last wound out of the sheets. wrap his wounds . feed him the last 10 bites of his dinner check everywhere for the batteries for his book and you know the rest....and they have the audacity to get melodramatic.hahahah HUH!
I also struggle with the poo. I can tell pretty much when it is time and struggle to get him on the toilet. Cleaning up is a nightmare. Once I put on my rubber gloves I can cope. They are my saving grace. I stand him up holding on to bars or whatever and use wipes. I have apologized and told him I am sorry for verbalizing during this but it is part of my coping mechanism kicking in as this is not something I can do easily. i don't know what I will do when he can't get out of bed and he is using his pullups to relieve himself. The constipation is also part of the problem as sometimes there isn't time to get him to the bathroom on time. If I had wanted or was able to do this easily I would have gone into nursing and made mor money,
It must be difficult for you with your Mum I know exactly what you mean about losing it and then feeling sorry and guilty because you think you've humiliated them! It's so hard, I liken it to looking after a giant baby (I have three children and I tell you it was so much easier looking after them!)
Keep battling on I'm sure you are doing a great job!
Thanks Pat, I really appreciate your understanding. I hadn't realised how all consuming this role would be and the lack of sleep makes me so grouchy, as I'm sure it does us all! I always apologise afterwards and try to make a fuss of mum after I lose my patience but would rather it didn't happen in first place. But I'm working on getting more help in the house so that should help massively and allow me to have some personal freedoms back. I Hope you and your loved one with PSP are well and getting any support you need. Best wishes, Kelly xx
Wow I am so glad That I am looking after a lady. Incontinence was an issue but helped by pads. Only ever had accidents in bed or in toilet when I let her get caught short. I know it sounds crass but when the patient becomes less mobile the issue changes still issues with cleaning but now I put M in the hoist while I clean her and scrub air mattress and change the bedding now have 4 quilts ( on, in wash, drying and spare) and more sheets than I want to count. But at least the liquid feed reduces the amount of poo.
Thanks cabbagecottage will check out the council for dealing with wipes as have had 2 main drain blockages outside house embarrassing and smelly.
I can't imagine what it must be like for the poor person with PSP and the carer once they need to be hoisted. So sad. Mum tends to only poo once a week whivh is part of the problem .. But I bought a great sheet from Argos that's waterproof but doesn't rustle like plastic and feels like terry cloth so doesn't feel or sound like a protective sheet. And it's washable. I also have a sheet on top too and mum wears tena pants to bed and I'm the day if we are going anywhere. You have to have two people to hoist though right? Mum hasn't had a peg fitted yet but it's been discussed and she can thankfully still walk a bit. She also has a healthy appetite (especially for desserts! Lol) so still weighs 11 stone! Not sure what will happen when she reaches the hoisting stage. That must be such a difficult thing to have to do, emotionally and physically. Best wishes to both of you x
Thanks Kelly. Margaret was 11st. But lost over 2 st over 6 wks after new year as she lost her swallow reflex. Very quick loss of weight due to not getting enough to eat and using all her energy fighting the swallow and choke meals took over a hour a time. Watch for this and get speech therapy or dietician straight away do not wait for normal appointment which is what I did, it is urgent. District nurses, carers and Marie curie nurses insist on 2 to use hoist, but I have worked out how to do it single handed and as long as Margaret ok with what I do I will continue. Will check out Argos thanks again. Best wishes to you both Tim
Hi sorry ought to convert a stone is 14 lbs so 235 pounds is about 16 stone 11 lb it makes us Brits weights sound slightly less than your pounds only though exactly the same.
you also put any pads in it will all go into the bag . we don't know all the things that are available do we. I only thought about it because my mum was in a nursing home for three years after having a massive stroke . one day I watch as a large council lorry came and collected all the waste it was really eye opener . I rang to council to ask if they did the same thing for people in their own homes and bingo ,
I am not sure if I have mentioned that if you have turned a room over for use of Beds commodes wheelchairs etc you can also claim a reduction in your council tax . mine reduced to a lower band . you can also get in touch with power company to go on a priority list in the event of a power cut . because you have the hoist bed maybe stairlift that you rely on .
Finally we have a routine that has saved some mess. This is after completely changing bed linens two times a night and three big accidents in public. The mattress has a rubber cover. On top of the bed pad we put three hospital pads. They are about 3x5 foot.). Then all I have to do is throw top sheet and pads in wash and replace. When traveling I just put the pads right under him. Now we have diapers. After the public poop incidents we agreed, sort of, that it was time, And he has fallen so seriously he can't get them totally off. It took a long time to find the combination of things that work. Searching web sites and such. Costly to keep trying different products and failing! But now we have things that work most of the time. Not much help available along this line. When he is awake I take him to the potty (another term for loo.). So we have all the missing and cleaning. I try to keep everything clean, but my daughter is always sniffing when she comes over and spraying us with perfume! She thinks I'd really want to know...but I'm not so sure... Hang in there everyone! Jill
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but I just freaked out when I saw the mess everywhere and when she ignored my direction to stop waving her hand around and to let me shower her. I also have a mild OCD for cleanliness and germs and these incidents send me off the richter. I feel terrible for shrieking at my mother for things she can't really help and things I should just try and act normal around so as not to belittle or embarrass her. It's just so hard to be continually tolerant and patient when you're exhausted and frustrated with everything! Sadly I don't have nice neighbours who help out and despite having 3 siblings it's just me and mum battling the PSP. Anyway, today's a new day! Coffee and a shower and I'm sure I'll be back ready to help mum battle on xx 
Aspiration pneumonia again
There's that guilty feeling again
