Mini strokes and UTI's when on comfort care. Input?

I feel your pain. My boyfriends mom has Alzheimers (for 7 years now). She lives with us, in the house that her and her husband built 17 years ago...this is her home. She had fallen a couple of years back and broke her hip, it was repaired but she has never walked correctly since, without assistance from 2 people. She was not steady on her feet. She doesn't really "talk" to you....she says words and numbers and letters but only occasionally you can make out what she is saying. It's the saddest thing to watch but she was doing alright. A little over a week ago, all of a sudden, she started breathing funny and spiked a temperature, really high. She has a DNR but we were not on Hospice or anything so her son called the ambulance and she went to the ER. Eventually, they found she had a UTI (she has been prone to them but the symptoms weren't there this time for us to catch it before it got bad), but it took 2 days to find it. In the meantime, she was admitted to the hospital and she was on antibiotics, fluids and oxygen and she started doing much better. It was a very grave situation for a while though. We brought her home a week ago, with two different antibiotics, which are now gone, but she still has not completely recovered. She is not walking at all anymore, no matter how much we try, so we are not going to try to walk her anymore because we would rather she spend her energy on eating. She doesn't swallow very good now and eats only tiny amounts of food and when we give her something to eat, she chews it forever and only swallows when we try to get her something to drink.....which is not easy most of the time. She is now on Hospice and I can feel that the end is coming soon, although we will continue to do everything we can to make sure she is comfortable.

I wish you all the luck in the world and pray for peace for you and your mom and family. It is a very sad situation, one that I hope that my kids don't have to go through when I get older....I would like to go very quickly, in my sleep so that the kids don't have to see me in such a frail state.

God Bless you and your mom!!!

I hear UTI's are bad for people with dementia and after having one after being put on antibiotics...
I found out there is a simple medication called PhenazopyridineHCI which stops the urine from burning, I was told to take an antibiotic Flucanazole 150 mgs, for the moisture that comes from not wanting to touch the area, but I was told warm water with lemon in the morning will not let the uti form, then there is the old standby of cranberry juice, I used the cranberry supplements. Hope this helps.
If she is having trouble voiding why haven't they used a catheter?
They are not made of latex anymore and are much more comfortable to use than they used to be. you do not have to leave it in, they can used it to relieve her.

Just got back from visiting my mom and she is not eating only chicken noodle soup and a small amount of it. She answers questions when asked does not try to start a conversation. She has not been out of the bed now for 2 days too weak. I believe that we are coming to the end of this journey. I remember when she first went into the nursing home she was so angry and just didn't feel she belonged there. Now she thinks of it as home. The staff is her extended family. She is quite attached to some of them. I like that I know when I leave her she feels safe and content. I do know that if she is not out of the bed by the beginning of the work week she will not be able to get out..... her muscles will be shot ;)

It is possible your mom hit her head when she fell and sustained some type of head/brain injury. it is really common in the elderly when they fall and something often overlooked during an assessment. It can cause all sorts of symptoms depending on where the injury was sustained. A UTI can cause dementia symptoms that are usually quickly cleared up with an antibiotic. Be sure she is hydrated as dehydration is going to make her feel worse and her symptoms worse too - jello, broth, ice chips, fruit, etc. work - not just drinking water. I am sorry you are going through this. I know with my mom (she died in August; was on Hospice for many months) I just kept her comfortable. We didn't insist she get up towards the end - it was too hard for her. We read to her, watched TV, talked, sang, put on CDS, brought her cat to her bedside, just sat quietly. We talked about my dad who had died 3 years before and reminisced a ton about things that had brought her pleasure in life. This final chapter in life is so hard - we want to sustain life as long as possible, while knowing we aren't doing anything that is making someone uncomfortable, etc. I don't know what your spiritual beliefs are, but prayer helped a lot for my family, just offering up to the higher power the things we don't know how to fix....and asking for calm, peace, comfort and answers really helped. I know I fought for my mom a TON when she was on hospice; it is end of life CARE and that is not the same as just stopping everything. What I mean by that is that it is okay to ask for whatever you think your mom needs to be evaluated and treated if you think she is up for more interventions than what can be provided where she is; we have the right to stop hospice any time...and then it can be restarted. We did it twice with my mom and it was worth it because she was able to go to the hospital and get evaluated/treated for a bit. She also went to the hospital once for a non-hospice diagnosis issue and remained on hospice there. I hope I am not confusing you. Peace to you all.

Hospice is not about prolonging life, it's about dying with dignity and comfort. Some patients change their focus, once they are on hospice, they stop fighting the disease and peacefully accept eternity. This may be upsetting to family who do not see or accept the end coming. Initially you feel shocked and numb, you may have moments of panic or denial. This may be followed by deep despair or anger. With time and help you move on to the acceptance of what is, and ever cherish what was.

2lslana first posting this and not receiving responses must be frustrating! It happened to me before as well, and here we are 10 days after your original post, and to be going through something so difficult! I do not know how AC works with new threads and calling attention to them. When we all find one of these I suppose if we flag it as inappropriate it may receive more attention.

How is your mom doing now? Urinary tract infections can have significant impact on older people, particularly those with dementia. My mom was admitted to the hospital with stroke symptoms about a month ago, but it wasnt. The best guess is that it was a UTI causing the symptoms.

What a hard thing to be going through, I cannot imagine.

lwentanon-
The problem with dementia and UTI's is that they do not recognize the pain or symptoms. Caregivers are left to guess. My mom has had four UTI's since May. We saw everything from behavior changes, increased confusion, back ache, and stroke symptoms. It is complete guesswork in those with dementia and symptoms can manifest themselves differently each time. I now suspect my mom has another UTI, am taking her to the doc tomorrow.

My Mom has a brain injury from 3 years ago which just threw her right into dementia. She has been doing pretty good for the past little while, minus the dementia happenings. This terrible Crud has been going around and I got it and of course, taking care of her, she developed pneumonia from it. She spent 10 days in the hospital and had a mild heart attack and wasn't expected to get out, but she beat it and has been home for about 12 days now. Doesn't want to eat, will drink if I make her, only thing she wants is coffee. She is getting weaker by the day and I cannot stand to see her just laying there sleeping. She is sleeping around 22 hrs a day now. She has used Depends since her brain injury and still feels the need to go to the potty, but also uses her Depends since she sleeps so much. I have to do the lifting and tugging, because she is getting weaker and weaker. I, too, think this is the end of the journey. She is 94 and I think she will just go to sleep and not wake up. My heart breaks and it breaks for all of you facing this and doing the caregiving. It is not a job that one wants to look forward to, that's for sure. My last resort today is to get her to the ER and get some fluids in her. Please say a prayer for her and my best to all of you.

Well i had my mom in hospice and it was a horrible . Everything was fine till they told me to put her in respeit care,then everything went down hill, i felt no support and when i would call everyday they said shes fine,then one day i called and the nurse told me she was having troubles breathing i went over their right away and she was like in a coma, she didnt talk or move then i noticed her wedding rings gone so i asked and no one knew what happened to them i was horrified at her condition cuz days before she was eating and talking ,then they told me the pastor was sitting with her when she wasnt breathing right trying to keep up with her i really thought that was strange so yeah many questions like why didnt they call me and tell me i was so worried i had them bring her home the next day. When they brought her home it was a cold morning and they didnt have her coat or hat on and god know how they got her dressed in sweats, we had to cut her sweats off her to get her in a hospital gown and then got her into bed the only thing she said was hungry ,cookie, my heart went out to her as i was her care giver for the last 1 yr of her life, i did not understand why she went to an eating and thriving and talking person to nothing ,she was on morphine that they told me to start right before she went to respiet care. she was only home a week and she never talked again she was like a shell not really their i would talk to her everyday then one night she started breathing really fast i didnt understand so i called hospice theycame and said shes fine then told me not to call on the weekend as that was her day off and i did call the faucility and they told me she would pass in 21 hrs i said what i dont understand, i begged them to pease come check her out they said they couldnt no more hung up and she passed so i called them back and boy they shot over like a flash then they should compasion .itll be 2 yrs since my mom passed and all that had happened still i questioned as for hospice weres the compasion, i told my kids if i get to end of life please dont put me in hospice they make u die faster

I won't get into the good or bad of hospice having been a hospice nurse and although I say it myself a very good one for ten years. Everyone has the right to make decisions for themselves. Educate yourself and ask questions. Just because someone has letters after their name does not mean they know everything. Insist they find an answer to your question that you can understand and until they do don't do something you disagree with. The main goals at the end of life are comfort, especially pain relief and freedom from anxiety. It does not matter if the patient sleeps 22 hours a day. Does not want to eat, no problem. Give whatever the patient fancies but in a minute serving on a tiny plate, a couple of teaspoons may be enough, but faced with a dinner plate of her previously favorite meal is simply going to intimidate. keep everything moist and easy to chew and swallow. Offer liquids in tiny glasses and cups. keep the mouth moist and clean. Don't take a whole carton of pudding or yogurt to the bedside, again a table spoon serving is more appealing. Serve food on the prettiest dishes you have. Use a pretty dish towel rather than a bib to protect clothes and bedding. If there are children in the house who can be trained feeding grandma is a good task for them. The interaction will be good for both generations.
CarolLynn, you are a wise and thoughtful woman. I found your explanation of your beliefs about passing into the afterlife very helpful and inspiring