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My mother is 95 years old and has been living with me since December 2022. She first moved in with me because she was sleeping all the time, very frail, not taking her meds and not eating. Once she moved in with me, she started to stay awake more, read her books and watch TV.
She steadily started sleeping more and reading less, but was still eating pretty good and she loved her sweets.
In February/March, she started getting very restless/anxious, not able to get comfortable and complaining of being short of breath and not able to get a deep breath. She is on Hospice for dementia, so they prescribed her with Lorazapam and Seroquel. She takes the Seroquel every morning and sleeps most of the day and night. She wakes up to eat very little, normally an egg and a piece of bacon for breakfast and a half sandwich and chips for a late lunch. She had a fall about a month ago that has caused her to not be able to get to the bathroom(she uses a walker), so now we have a bed side commode next to her bed and my sister and I both take turns sleeping in her room at night so that we can assist her to the potty. She still thinks she can get to the commode on her own(she's very weak and can barely get her legs to move).
Just this past week, she is saying that she needs to urinate every half hour to hour, but when she gets to the potty, she has already gone very little in her pull up and says that she can't pee. We are treating her for a UTI even though we don't know for sure that is what the problem is, since she is on Hospice, we can't take her to a dr and she couldn't get to a doctor even if we could take her. She doesn't want to leave her room. We are having a difficult time engaging in conversation with her because she just doesn't seem interested in talking.
Has anyone had any experience in any of this? Is she nearing the end of life? We are exhausted and mentally drained.

You can certainly be treated for a UTI when elderly and a doctor will test for this so as to give the right antibiotics. My own mum is 99 and when UTIs became frequent due to her age, which makes them hard to fight off even with antibiotics, she was put on 1 antibiotic a day once her infection was cleared and this has kept repeat UTIs at bay for over a year. UTIs, as I am sure you know can cause hallucinations as well as a risk of sepsis, but mum is clear of these problems now. Clearly, I dont know your mum, her needs or situation - I merely offer my experience in the hope that is will help. I do wish you and mum well and send love. xx
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I'm not sure why you and sister think that because she is on hospice, mom can't be treated. Sometimes two people can be listening to the same conversation but not hear the same thing. I experienced this when my dad was just out of surgery; the surgeon said that I could ask the oncologist about dad's chances with chemo but that in doctor's experience with his own dad, the chances weren't good for my dad to survive it. My relative heard that the chances WERE good for dad to survive it. This caused all kinds of trouble later on when dad wanted to (and did) stop chemo because it made him too sick. So make sure you and sis are always on the same page with what you hear, especially since you're both so tired.

You want to keep her home until the end, which is understandable but possibly not doable for all the reasons that you mention. There is no shame in deciding that this was a bad decision! You might think of moving her to a stand-alone hospice where she will have 24/7 care by professionals. Then you and sis could rotate some shifts but not feel that you must do everything yourselves. You'd both be able to get sleep when you need it and be the kind, caring, loving daughters she needs to see rather than the harried, hollow-eyed zombies that you feel like now. With a dying person in the house, it's often impossible for others to get the rest they need in order to provide the best care and make good decisions.

At end of life, the dying are not always much aware of anything, nor do they necessarily recognize their surroundings or know what's happening to them. I'm so sorry you're all going through this.
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jeepgirl0909 May 28, 2024
Thank you. She is currently taking antibiotics for the UTI, but wasn't tested for it. I would just like to know that is what she actually has instead of them just assuming.
My sister and I have both decided that we will care for her until we just can't do it anymore. We are both married and have very supportive husbands, but it does take a toll, especially when that's all you can really think about 24/7.
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Hospice will normally test for and treat utis considering the neurological symptoms many elders get. My dad’s hospice gave us test strips and antibiotics even before any uti.

He was catheritized, and perhaps that’s an option. With a 95 yo mom, you two are likely elder yourselves, which means watch your own backs and don’t fall for her.
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jeepgirl0909 May 28, 2024
Thank you, I'm going to ask them if they can test for it when they come this week.
Yes, I'm the baby of the five siblings at 53 years old, my sister is 66. Not quite elder yet, or at least I keep telling myself that. LOL
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Who is advising you that your mom cannot have a UTI diagnosed or treated? Because they are DEAD ON WRONG. This surely wasn't hospice that you asked, because Hospice is about COMFORT and trust me, a UTI is anything but comfortable.

That old wives tale about no antibiotics is also wrong. Anti biotics can be given for a UTI and to prevent pain.

Recently we had some few people who thought that an elder on hospital cannot ever go to the hospital ER or Urgent care for some diagnostic testing.

You surely are now wishing for the end. While a UTI that goes to sepsis may bring on the end, not all UTIs will go to sepsis, many just stay stable, chronic, and painful (or for some elders not at all painful). So the end is not necessarily near, and this can go on a long time. I am so sorry. Each case is as individual as a thumbprint.

Please have good discussions with Hospice. I will have a real hard time believing that your Hospice told you your mother could not be treated for a UTI. There is much discussion as to whether or not they are efficacious at end of life. Sometimes are difficult to take and tolerate, sometimes cause complications such as C-diff, and etc. But it is never a "cannot be given" directive.

Speak with your Hospice and wishing you good luck.
This is also wrong.

So my advice is to first address the UTI for the comfort of your mom. Simple dipstick testing will tell you if there are nitrates and leukocytes. Positive on this is indicative of infection.
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jeepgirl0909 May 28, 2024
Hospice prescribed an antibiotic for the UTI, but didn't test for it, they are just assuming that's what the problem is. I would like to know if that is what she actually has, since hospice didn't test for it. She isn't complaining of a burning sensation, she just says she needs to go, but once she's on the toilet, she says she can't go. Most of the time, she's already gone in her pull up.
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Talk to the Hospice Nurse and ask her to explain the signs of EOL. (End Of Life)
She will stop eating and drinking at EOL so if she is still eating and drinking this maybe a decline that she has before EOL.
Other things that she may stop doing
She will probably sleep more
She may stop walking

There will be changes in her breathing
There will be changes to her skin.

Your Hospice Nurse and or CNA can give you more information.

(there are test strips you can buy at the drugstore to detect UTI's)
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jeepgirl0909 May 28, 2024
I didn't know that the drug store sold test strips for UTI, thank you for that info. I will definitely check that out.
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Seroquel is very strong I took it Once and fell down a flight Of steps . not sure why she would take that upon waking ?
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jeepgirl0909 May 28, 2024
The Seroquel is the only thing that we have found that has helped with the anxiety/breathlessness. We have a caregiver that is with her during the day while I'm at work so she is never alone to get to the bedside potty by herself. I have bought a help button for her to push whenever she needs something and I also purchased a fall prevention mat that goes off whenever she is trying to get to the potty. Hospice is always pushing the morphine on her, but she doesn't do well with morphine, she has terrible dreams and hallucinations and it doesn't really help with the breathlessness/anxiety for her. We are just trying to make her as comfortable as possible.
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I’m sorry she might be at the end. My father, who normally lived and breathed to be around my brother and me, kind of shut down during his last week. He slept a LOT and didn’t want to talk much. It’s so hard to watch.
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jeepgirl0909 May 28, 2024
It is very hard to watch, she doesn't understand why God hasn't taken her yet. She's been telling us she's ready for years. It's so heartbreaking.
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This is the end of life, and what it looks like. I am so sorry, hardest thing you will ever do. But you and your sister sound amazing. Your doing amazing, even if it doesn't feel that way. Your story is actually heart warming, the sweetness you and your sister are giving your mom.

Best of luck , I am deeply sorry for what you are going through
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jeepgirl0909 May 28, 2024
Thank you, it is very hard to watch, but we love our mother very much and want to care for her as long as we can. Hopefully we will be able to keep her at home until the end. It's just so hard not knowing when that might be, she is just miserable.
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