Recurrent UTI


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Recurrent UTI

Postby Ruthann » Wed Jan 02, 2013 11:31 pm

Greetings everyone.
This is my first post. The information is overwhelming, so I have a question:
First, I live out of state from my mother. My mother lives in an apartment with 24/7 caregivers. I have a sister who lives in the same town as my mother. We have realized from this sight (thank you) that my mother is in the last stage of PSP. She is not able to walk or take care of herself but still has a decent appetite, although it seems every meal involves coughing. We have not been able to understand her for many months. Also, she is sleeping more now.
In the last 2 months she has had recurrent UTIs. In the last month she has had 2 where there is blood in the toilet and I do not mean spotting. Is this something that is caused from PSP (muscle control)? I realize that UTIs are infections but is there anything that PSP could contribute to. My sister feels when she tells her main MD that she has PSP he doesn't understand her. I have encouraged her to inquire about hospice even though my mother has someone with her all the time. Could Hospice help her with medical advice?
Ruthann
 
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Re: Recurrent UTI

Postby eplowman » Fri Jan 04, 2013 12:35 am

And greetings to you, Ruthann!

I regret the reason why you are here in the forum, but you are among a number of caregivers and others caring for and about a loved one with PSP.

I would suggest that your sister download and print out copies of the NIH/NINDS fact sheet on PSP (see below for the link), and hand a copy to each of your mom's medical professionals and whoever is caring for her daily.

If the bleeding is internal, she should be seen by a doctor immediately. If it is external, the sister should look closely for clues as to why. This should include visits unannouced to caregivers in advance. If your mom is incontinent, I would suspect she is not being kept clean and dry; that would be a chief suspect for cause of UTI's. And in cases of super neglect, irritation of the skin could lead to itching, scratching, and bleeding.

Let us know what you learn, and whether there are further issues or developments.

Here is the link to the NIH/NINDS fact sheet for PSP:

http://www.ninds.nih.gov/disorders/psp/detail_psp.htm

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Recurrent UTI

Postby Robin » Sun Jan 13, 2013 6:11 pm

Hi Ruthann,

I'm sorry that your mother has PSP. If she is still eating, then it could be quite a few months (years?) before she enters the final stage.

Is your mother in pain from the UTIs? Is she hospitalized as a result of the UTIs? Is she sleeping more than 22 hours/day? If the answer to either question is "yes," I'd suggest having the MD your family likes the most (between the neurologist and primary care physician) refer your mom to hospice.

Even if the answer isn't "yes" to either of those questions, your sister would be wise to meet with a hospice agency now, along with your mom. Ask them if your mother qualifies now for hospice. And interview them for the hospice job. Hopefully you'll have a choice of a few different hospice agencies.

Hospice can provide medical input to your mom's situation. A hospice MD may visit your mother. (Find out if the agency sends out its medical directors. Some do, some don't.) Certainly an RN would visit your mother once a week. The RN would consult with the medical director of the hospice as needed.

What about an MD prescribing a prophylactic dose of an antibiotic? My dad took Macrobid, which seemed to help. I wish we had gone the prophylactic route before we did as my dad had one nearly deadly UTI.

It could be that she's getting UTIs because the bladder isn't emptying completely. This could be due to neurogenic bladder, which can be part of all sorts of neurological disorders, including PSP. You could take your mother to see a urologist.

If you and your sister intend to donate your mother's brain upon death, now would be a good time to make those arrangements. It's always best to make the arrangements before through-the-roof stress sets in, as it typically does when a family member is near death. There's really no such thing as making these arrangements "too early."

Good luck,
Robin
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Re: Recurrent UTI

Postby hamcghee » Fri Jan 25, 2013 11:28 am

My mom is in the late stages of PSP, and the newest symptom to present itself is the inability to pass urine when she feels the urge. If she feels the need to go 4x/day, she is able to empty her bladder only 2 of those times, and it takes quite a while. So far, no infections though. It is more a matter of it being neurological or an issue with the muscles not working properly - but I would think this could easily cause infection. She doesn't feel it necessary yet, but eventually she will need to be catheterized.

The stage your mom is at sounds very much like my mom. She moved into assisted living a year and a half ago. That is the time she started using a wheelchair. She was coughing and choking a lot and needing assistance with things like dressing and cutting food up. Since then she has declined to the point of not being able to get into her wheelchair on her own, her speech is almost impossible to understand, needs assistance with all activities of daily life, coughing/choking and aspirating, and staying in bed and sleeping a lot. Yet, even though she can barely open her mouth and has to deal with violent coughing fits after eating - she still has a good appetite.

We also have the support of Hospice even though there is 24/7 staff there. Hospice has been the most wonderful source of support for both my mom and me. She has an aide who visits 3x/week and helps out with care, such as bathing. Her nurse visits once or twice a week and helps out with any issues that come up, and she has a social worker who comes in and offers any type of support or company my mom needs. She really misses reading, so her social worker reads to her. If Hospice is an option, I highly recommend it.

Heather
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Re: Recurrent UTI

Postby Robin » Fri Jan 25, 2013 12:23 pm

Heather,
You might look into self-catheterization. Quite a few people in the local MSA group do this as urinary retention is the big problem there. Maybe your mom could be self-cath'd 4 times a day (or whatever makes sense). An aide at the facility might be allowed to do this; you'd have to ask. Or maybe the law in your state is such that only an RN at a facility can do this. Private individuals (family members) do this for our MSA group members.
Robin
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Re: Recurrent UTI

Postby Ruthann » Fri Jan 25, 2013 6:44 pm

Greetings Heather! From what you wrote your mother seems very similar to mine. My mother has needed help with everything for over a year. Some of her caregivers let her feed herself but for the most part they assist her. Most meals involve coughing. We cannot understand anything she says which is the hardest part of what has happened to her. We have resorted to blinking for yes. Her "bad days" are increasing, she is sleeping more, but on her good days she still has a good appetite. Hospice has replaced her inhaler with a nebulizer. She has asthma and she seemed like she wasn't able to take in the air with the inhaler. I believe she had some anxiety about her breathing. We think that her ability to eat is what will determine her end of life process. She really has been such an inspiration with the way she dealt with this disease. Her smile still brightens my life, but those are getting less. I wish I could post a picture of her for you to see.
Fondly, Ruthann
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Re: Recurrent UTI

Postby hamcghee » Tue Jan 29, 2013 12:04 pm

Robin, Where my mom is in assisted living (not a skilled nursing home) they will not cath her. Unfortunately I'm an only child and my dad has passed, so I'm not in a position to go over several times a day to do it. She will wait until it gets to the point she's comfortable having a permanent one.

Ruthann,
My mom amazes me too with how she pushes on day to day. Given the choice, she's getting to the point that she'd rather it all end, but would not go to any means to make that happen. She worries about leaving me and my daughter behind, us suffering another loss (my dad passed unexpectedly in July 2011), and about missing out on watching my daughter grow up. It's really sad. She is sleeping a lot more, and her breathing seems to be changing a bit. She sounds out of breath at times. Her choking and aspirating is terrible. But like you said, the speech has been the hardest part for her to accept. I am amazed at how otherwise healthy she has been the past couple years. I would have assumed this would all end due to pneumonia, and I suppose that could eventually be the case. She does not like eating in the diningroom at her facility, because she has "terrible table manners" as she says, and in assisted living they do not provide assistance other than cutting her food up. She has quite the appetite though and the coughing/choking does not seem to deter her at all. She has actually gained weight this past year rather than lost it because of all the snacks. It probably isn't technically healthy for her to eat the way she does, but there is so little I can do to improve her quality of life other than provide the treats she loves!

How long has your mom had symptoms and when was she diagnosed? My mom started falling 7+ years ago and the symptoms have been almost text book according to the stages since. She was diagnosed in September 2011. Have you looked into hospice anymore since your post?

Heather
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Re: Recurrent UTI

Postby Ruthann » Tue Jan 29, 2013 9:20 pm

Heather, my heart goes out to you. We all seem to be in the same "world". With out the forum, we would feel like we lived on a deserted island.
We started Hospice about 3-4 weeks ago. This has helped my sister immensly, for the medical care. My mother moved to an assisted living place before she was diagnosed.We are fortunate that my mother can afford 24/7 caregiving. I believe this has kept her safe for much longer than if she was on her own. She was diagnosed 3 years ago. Another blessing, she lives near Cleveland Clinic so the diagnosis was earlier (I believe) than most. When we look back, certain things that happened make us think that was the start. I thought she was having mini strokes. I actually think she has had this for 6- 7 years.
Today my sister called in tears that she has stopped eating. Actually, she has stopped with the solid food and is pushing the liquids - like ensure- away. The Hospice nurse thinks that she she may have some intestinal issues because she has not had a bowl movement for a few days. They are going to try other things.
I have volunteered for Hospice for 12 years and there have been some things that have happened (family dynamic issues) in the last few weeks. My brother, who has been the center of the issues has started to visit. I drove my Aunt who lives in Chicago ( I live in WI) to Ohio where my mother lives. I feel these are some loose ends that are coming together and she maybe ready to leave us. We shall see.
When I read in the forum what some are going through and what there loves ones were like at the end, I think my mother is much worse. It is a very fickled disease and every one is different.
I am the oldest of 7. My daughters are the oldest grandchildren (30, 28) but my younger sister is heart broken about loosing my mother and her children's grandmother. Don't get me wrong, I am also, but I have had the luxery of having the mother we want to remember for most of my daugher's lives.
God bless you.........
Ruthann
 
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Re: Recurrent UTI

Postby Robin » Tue Jan 29, 2013 11:38 pm

Ruthann,
Whether your mother is experiencing a bowel impaction (or constipation) or is nearing death, I hope her passing -- whenever it comes -- is peaceful. It's good that loose ends are getting taken care of, and I'm sure your mother would thank you for your help with that (where she aware/able). If your family is interested in donating your mother's brain (probably hard for 7 kids to agree on anything), please make the arrangements right away.
Best wishes,
Robin
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Re: Recurrent UTI

Postby hamcghee » Wed Jan 30, 2013 11:55 am

Ruthann,

I pray for you and your mom, that she does not suffer and has a peaceful passing - whenever that may be. I've found that one of the few things I can do for my mom to make her situation easier, is to honor her wishes and have her know that she does not need to push on for my sake. It will be hard, but when her time comes, I will be okay with it. Sounds like we have similar views on that. In some ways, I feel like I've already lost the mother that I had until the disease started taking over. Although, I must say I do worry about how it will effect my daughter (7 yrs old), who is super sensitive... having already suffered the loss of her grampa not too long ago. She doesn't remember my mom any other way, so grammy is just simply grammy to her.

I also commend you for volunteering for Hospice! Having hospice in the picture has been such a source of relief and comfort for both my mom and me. I am only 36 yrs old, am a wife and mother, and work (part-time). I'm an only child and as I said, my dad passed. Although she resides in assisted living, 100% of all the other responsibilities fall on me. Fortunately I have an aunt, who is also like a sister and friend, who helps and supports me in any way she can. That said, she does have her own family, responsibilities and health issues to deal with, lives an hour away, so I don't like calling on her too much.

Please keep us updated on how your mom is doing. I can't quite tell how far you live from your mom and if you're in driving distance to see her on a regular basis. I can imagine it must be difficult to be out of state.

Sincerely, Heather
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