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 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.
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.
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.
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
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.
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)
Best of luck , I am deeply sorry for what you are going through