Since my mother has been ill with pneumonia, she seems to have lost bladder control at night. She still asks to go to the toilet during the day but the last 4 nights apparently she has soaked the bed. My dad puts her in those absorbent paper 'nappy' type things but he says that she takes them off in the night and then goes in the bed!
He is beside himself as he has had to strip the bed at least twice every night for the past 4 nights. She is also awake and restless all night and they are both exhausted.
I just don't know what to do or say to help! What is the next step? We are hoping that this is temporary as she had a catheter while in hospital for 10 days and apparently this can lead to a temporary incontinence. If it is not temporary, then do we need to look at having a permanent catheter fitted?
My dad is just not coping at all and that is not good for either of them. Any advice would be very welcome.
Cate
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CateT
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Does this mean Mum is at home? If so, that is good news!
Having had a catheter in your Mum's bladder may well need "re-educating". Mum became incontinent at night for a while while in "respite" care. Our PSP nurse, Samantha, suggested that for a while Dad should set an alarm for about 1.30-2.00 am and get Mum up and toilet her whether she wanted to or not!! It is hard work for a while but at least he didn't have to change the bed - he"only" had to get her up!! After about 10 days she went back to waking him up when she needed the loo.
This was in October 2010 and ,sadly, Mum has deteriorated to the point where she is now largely incontinent day and night
To help a bit Dad bought a couple of large waterproof washable squares approx 2 feet square which means that if she does have an "accident" he only has to change the square and not the whole bed! He also puts her on the commode when he gets up for the loo himself "just in case".
Hi Cate -we went through this period as well -dad was no longer able to tell us that he had to go so we would check in throughout the night but he also kept his depends on and we used bed pads. He eventually was permenantly catherized but that was when he could no longer void and was retaining urine. I would take Kathy's advice and give it a little more time.
As far as the restlessness -could be the spasms being very active at night. We used amitriptlyine and small doses of clonazepam and my dad was also on Sinemet to help my dad through this - although sometimes we had to use PRN's in the middle of the night when he had very acitve "bed gymnatics" going on. Is your neurologist very familiar with PSP? If not - I can give you a list of my dad's medications and your doctor can adjust the doses to fit your mom. Also -it sounds like dad needs some relief -not just help but relief - -needs to get away and get some sound sleep. Can anyone help there or can you hire some overnight help?
Thanks both of you. Kathy, my dad ordered some of those washable squares today and they should arrive tomorrow. Dani, my mum was taken off the amitriptyline while in hospital as they thought it could lead to urinary retention? Seems no-one knows for sure about these medications, it is all trial and error. She does take Sinemet but they were very reluctant to prescribe her the clonazepam. I do think she needs something to help her calm down at times so I will try to push for this. Do people with PSP always suffer insomnia/restlessness at night? If so, I'm sure she should be prescribed a sleeping tablet to help. Surely the benefits outweigh the risks!
I am beginning to think that this 'pathway of care' for PSP patients cannot to put in place too soon. Hopefully then there will be a set course of medication for patients that doctors will know what is necessary to make patients comfortable.
Hmm - i haven't heard of amitriptlyine leading to retention. Very commom to prescribe amitriptriptlyne here in the States for PSP -helps with speech and walking and of course depression symptoms. I can tell you that clonazepam is in the family of drugs called benzodiazepines - like Lorazepam. Lorazepam is generally not prescribed for people with nuerological disorders because it has an opposite effect - makes the symptoms worse - although clonazepam is in the same family -very low doses can be very helpful - This is probably why they are reluctant to prescribe clonazepam. We didn't start with clonazepam - in fact we started with valium to help calm my dad - -I say maybe start there and as the doses increase and you hit the ceiling with valium -then go for clonazepam. I can say that most PSP folks do suffer from insomnia and restlessness especially at night. We don't have the "pathway of care" here in the states but I've read about it -PSP is really hard to tell when you are at the end until you are there and I sure wouldn't leave it up to the doctors to determine end of life - I had been told by hospice that my dad was going to pass away SEVERAL times and he didn't - when the time came I told hospice that I thought my dad had 2 -4 weeks left and sure enough he passed 2 1/2 weeks later. Of course there were signs that led up to this but I had notice a change - -it's hard to articulate but there was definately a change and I knew we were really close.
Hi my mum does not sleep at night without a sleeping tablet. We give her one 25mg quetiapine fumarate tablet just before she goes to bed. She usually sleeps like a baby when she has it. However we have to give it to her just before she goes to bed because within 5 to 10 minutes of taking it her legs go to jelly. Good Luck
This pathway of care for PSP just sets out standards of care required and the level of assistance needed etc in a bid to educate doctors and health care officials who do not know enough about PSP. I think you are referring to a different 'care pathway' which is associated with end of life? Here is what I meant: pspeur.org/care_pathway/
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