Dad is needing to be catherized a few time... - PSP Association

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Dad is needing to be catherized a few times a day. Does that mean the end is near?

ddspan profile image
7 Replies

My Dad who is now in a nursing (6 weeks Thursday) has been having trouble urinating. He never complains and luckily for us his personality has gotten so much sweeter and childlike that everyone loves him. However, with all that he's been through with PSP he says that the cathater hurts him. Mom goes every day and his care givers are wonderful but they can't let the urine just stay in his bladder. He is drinking more fluids (with thickit of course), but still can't go. The Nursing Home has suggested a urologist might be able to help him so they've made an appoint for him (Mom & brother will accompany him - Unfortunately I live out of state). Is this a sign that Dad's time here is getting shorter. Anyone else gone through this?

Thanks

DeeDee

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ddspan
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7 Replies
kay1 profile image
kay1

I think the urologist is a must, my husband had the same problems, and he could not urinate,because of sodium levels in his body the catheter was a great help, so was the treatment for the sodium levels. He now has a pubic catheter which seems to work even better for him. He has been in nursing home twelve months, Each PSP case is different, and this is just our experience. Hope things get better for you.

x

coleen profile image
coleen

I agree with Kay a urologist is a must. My Dad has had a catheter for about 6-8 months, and when he was able to communicate with us he never complained of pain. Overall he has been quite comfortable with it and it gave us some peace of mind because we knew he would not try to walk to the toilet, because in the early stages walking was an accident bound to happen. Best wishes to you and your family.

Jeff profile image
Jeff

Hi,

Jeff has now had his catheter in for a couple of weeks. It was the result of an emergency trip to the hospital for high fever that was caused by a severe uritary tract infection. It took them a couple of days to get the fever down but he was very dehydrated so they had to use a catheter. Once they took it off, they realised that he couldn't urinate without it..........now it's full time. He has been moved from the care home to another, higher level of care facility where the staff are better able to care for him. He is on thickened fluids as well.

A urologist saw him and there were a bunch of tests done but nothing was really found. Things like this are going to happen and that we have to understand that the progress of the PSP is unpredictable and without mercy.

One of his good friends, who hadn't seen him for over a year, was out to Victoria (Canada) a couple of weeks back and was shocked at the sight of him. They are the same age (65) and he said, "It was so sad to see my good buddy in a withering body but he was still in there some where!". It was quite a shock for him.

I am going to see him this weekend to see how he is making out. He hates the new place but then again, he has hated every place that isn't his home!

Like you all say over and over again, I just wish I could grab Jeff and pull him out from under this disease's control! I miss my Jeff soooo much!

Sheri

dllera profile image
dllera

Hi Ddspan - a cath does not mean that you are near the end but retaining urine is dangerous. My dad was unable to urinate due to severe muscle spasms and had a foley cath for almost 2 years before he passed, however, with PSP there is no free lunch - caths will eventually cause infections - UTI's so the use of antibiotics will increase and lesson the effectiveness as time goes on. Lots of people with or without PSP live for a long time with a cath.

Hope this helps,

Danielle

ddspan profile image
ddspan

Thank you all so much -- just knowing there are others dealing with this horrific disease and understand the fear and uncertainty help. Thanks you all

Hugs

CateT profile image
CateT

I have just read this. We are having this problem with my mum. I had no idea urinary retention was a problem with psp. I thought it was the opposite ie urinary incontinence but this illness puts one on a very steep learning curve unfortunately.

SheilaN profile image
SheilaN

Sorry to hear about your dad. It's ironic isn't it that an inability to urinate goes hand in hand for some PSP patients with incontinence? For many, many weeks, despite drinking a lot of fluids, my husband's bladder only worked twice in 24 hours, once during the night while he was asleep and once during the day but never completely empty so risking infection. He didn't have any pain but it was a real worry for me. Once I agreed for him to have a catheter everything changed. His bladder works perfectly now and there is much less risk of infection.

A friend recently experienced excruciating pain and was rushed to hospital. After various inconclusive tests they discovered an easily removable blockage in his bladder, catheterised him and hey presto, problem solved. For a PSP patient who cannot express themselves perhaps the bladder should be a routine source of testing when problems arise.

Take care

SheilaN

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