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

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

2ts - hi kathy, do you have a belief system about what happens to our being when we cross over? Even though I love her and took care of her at home to the very end (well, all but the last 9 days actually), my mom was a Yeller and hitter in all of my younger years and I jokingly say that her personal belief was that everyone was entitled to her opinion (altho she did NOT want to hear anyone else's). As you may imagine, my teenage years were stressful. Most things even doubt as I was an adult but flipped back to her prior behavior - somewhat instigated by a self centered sibling - in her last 10 years, fueled primarily by her oncoming drug,induced dementia.

I asked the initial question because I want to share with you that I believe when our soul, essence, inner being, whatever one calls it leaves the physical body behind and returns strictly to the non physical realm, that energy is now all knowing on a universal level about laws, kindness, love, etc. and that there are no ugly departed souls.

I just asked my higher power to deal with my mom as if she were someone else (as she mostly wasn't herself anymore anyway), not be drawn to her level and know that open, healthy communication would be possible after she passed to the non-physical.

I don't know if it will help you but that's my take...many hugs!

jms712....I am so sorry for what you are having to go through. Just keep in mind that she doesn't really mean those mean things she is saying. Just keep doing what you have to and it will all work out in the end. Good luck to you and keep in touch with all of us....it's nice to have people to talk to. There is also a group on Facebook called Alzheimer's Cafe. If you are on Facebook, look it up and join. There are 193 members so you can get good help.

I just found this website yesterday and I feel so comforted to know that there are others experiencing the same feelings. Mom is 90 and in Assisted Living. She has several health concerns but the dementia has been rolling in at a fast speed. She was retested after concerns and she did show consider decline. I now have not only POA but something called Decisional Capacity (for health and financial concerns). She had gotten it in her mind that she was moving back to where she previously lived. She got someone to take her there a few weeks ago. This person does not have permission to take her out of the building. She is since banned from taking her anywhere. My mom can not get it out into her head that she can't move or that she has dementia. Today, 2 women from her facility called me via a conference call to tell me that she threatened to call a cab and leave AND that she was calling a mover to move her possessions. They requested that I get in touch with the place that she wanted to move to. I was to ask the director there to call her and tell her that they don't have any vacancies and she is to call back in about 6 months. I received word back tonight that she will call her tomorrow. I hope she accepts this rejection.

I feel badly that I have to be the mean child and that I have to be the victim of her mean and angry words.

I guess we all need to pray for each other.

You know I wished she didn't remember but she does...I wished that I had awesome memories to fall back on to make it less painful, but those are far and few. I wish so many things, but reality is she will not change..people say anyone can change, but for her to do that I believe it will take an higher power and she refuses to see the chaplain. She just makes me sad and mad...I hate she ended up in a nursing home. Her life style took her health away and I had no other choice. When she was in her apartment she had handicap items all over it. She had Life Alert and the last time she fell before she was placed she had lymphtic fluid leaking from her legs that I had taken her to the doctor for numerous times that we just could not get under control. She never used her life line nor her phone that night. I found her the next day with both beside her on the floor smoking a cigarette. I wished things were different for us. I have always tried to do my very best for her I never wanted her to feel abandoned. I never leave her without kissing her forehead and telling her I love her because I do. I just don't like her much at all. I have children and I cannot imagine ever treating them the way she has treated me. Which even in my 58 year old mind leaves me a need for approval from her...My therapy did help but I truly believe that the only peace will be at the end when I do not go everyday with my stomach in knots. Her quality of life is not good and I know that too, but I cannot fix that. She is surrounded by people that have tried to be friends with her but like one lady who is very nice but my mom said that she does not wear a bra so she will not hang out with her. My mom has been fortunate that she has not had a roommate for more than a couple of days ( she died). I could go on and on and after awhile it is just repetitive whining.

2tsnana-
My mom also gets quite angry with me at times, accuses me of lying to her, then if she finds out I am lying she will disown me. Even when she had it together she would say these things. But now, is different, because she never remembers these incidents.

My mom is very unhappy and the way she shows her strength she has left is by being mean. I am her only target I accept that, but I do not think I will ever like it. She will die mad at me and probably me at her. It stops here...I will not be that and if I ever do start in that direction I hope that my husband or my children will confront me..the last thing I want is to leave this world mad or feeling someone owes me something. My life is what I make it I know that.

Hospice is a lifesaver. They come Monday-Friday to bathe her and they are a great comfort. My mom does not like the social worker she said she talks too much, but she has been very helpful to me. My husband had emergency surgery the doctor perforated his bowel during a routine colonostomy. She called to check on me which I truly appreciated. My mom has refused to see the chaplain so I have not met him. My mom's UTI is better she is still confused.

May Strength and patience be your companions on this difficult journey.

your mother could have been in a diabetic coma from her UTI . I went thru the same thing with my mom and it was harrowing . she was at home and i took care of her, so i took her to the ER right away and her symptoms were pretty much like your mom's . its one thing you can look into . maybe you might have to talk to her doctor about a catheter since she is having a problem with passing urine . I must warn u that having a catheter while helping will in all probabilities cause more regular UTIs . there is really not much that can be done about that except keeping a track of all her moods, the color of her urine, whether or not there r any tiny clumps in the tube or mucus or cloudiness . mostly no one but you will notice these things but you and you will have to fight with everyone who runs the facility your mother is at . dont let anyone get the better of you . as long as you notice something it exists and dont let ANYONE second guess you cos you know mom best . its tough but hang in there, theres not much else you can do but that . and we are here for you, :) .

The definition of Hospice is providing comfort care to the terminally ill, whether it is at the patient's home or in a hospice.

Actually.....Hospice is not only for "end of life". We have Hospice now, coming into our home as that is where my MIL will be passing when her time has come. They have been nothing but EXCELLENT to us. We almost lost my MIL but she is getting somewhat better and they have helped us tremendously over the last 2 weeks and have plans to continue coming back to see us almost daily. I am very very grateful for everything they are doing for us. Nothing bad about Hospice from me and they are not only for "end of life"....

In seems as though there are many people on this thread that don't understand the purpose of hospice. It is for the very final stages of life, so of course family members will notice changes in their loved one.. including the loss of will to live.
In the city that I live in (Victoria, B.C.) we have an excellent hospice and palliative care team which allows people to die in their own home with hospice involved. It gives people the right to die in their own home with peace, dignity, and of course what ever drugs are needed for pain management. Also, hospice social workers visit to provide support for family members. Hospice is an invaluable part of the dying process in my opinion.

My mother does not want to go to the hospital. My mom also has COPD, CHF...The doctor did come in to see her but it was after the episode he said only a CT scan could tell for sure about the stroke. I am very sure in my mind it was. She has been delusional for a long time and takes Depakote for that. She has been mean for a long time and that has become worse. I believe she has had at least 3 mini strokes in a two week period. Her quality of life is not good she has had a DNR for a long time. I am her only child. She has alienated everyone out of her life by her behavior the staff and hospice are the only people besides me that see her. Last week she asked for some shrimp I told I would bring it the next day ( I go see her M-F) she said she would ask an aide to go get it for her if I would give her money...so I immediately got up and went and brought her a shrimp dinner got back to work late because this is what I do. The next day I asked her if she enjoyed her shrimp she said you know why I asked you to go get me the shrimp ? I said I assume because you wanted it and she said no it is because that Bastard that you are married to told me I couldn't have it...Well, none of that happened but it still stings. She had me running around like an idiot to prove a delusion. I am going to be honest there are days that I do not like her. I went to the nursing home the night of the stroke episode and she could not speak...I told I love her and that I was there for her. I go Monday -Friday I provide for her everything she asked for sometimes with money I do not have....I am her only visitor beside the people paid to tend to her. She will not see the chaplin from hospice and now has asked that the social worker not come back because she talks too much. Now I do understand that she is sick and helpless and I am a grown 58 year old woman but she still can turn me inside out in a heartbeat. I leave there crying more times that not. People say well don't go so much well since I am the only one I feel guilty when I do not go. Yes, I have therapy for all this that started with childhood. She worked along side my dad my whole childhood. I had one Christmas with my parents that was in 1979 I was 22. She left me with people I should have never been left with. I was sexually abused and physically abused. Most things I never told her because what good would it do ? I left home at 17 got married had 2 children by the age of 22, divorced at 24 and remarried at 25 to a man that I have been married to for 32 years. He raised and loved my children as his own....he has been my normal my saving grace...the absolute love of my life. He was a USMC and we moved around a lot so I was taken out of my abnormal surroundings. He retired in1996 my mom moved up here in 1999 into an apartment I have taken care of her since then. She was placed in the nursing home in January of this year because she was delusional and was falling constantly at the time an aide came twice a week and she had meals on wheels and still me everyday.....Can you believe this post started from a question about an ITU and Mini Strokes???? I am tired and she keeps me in turmoil ...when she was messed up from the strokes and UTI I was worried and scared that she would end up just a mass in a bed....not anything I would want to watch or her to be. People say do not let what she says bother you she can't help it, but she has always been this way. I told her last week that she is determined to die mad at me...she said she had worked too hard to end up in a nursing home. She made bad financial decisions, had affairs gave all her savings to my half brother who passed away in 1997. I have never taken anything from my mom. I have made sure she had everything she needed to make her happy but I have found out that is not possible. Now you ask how can someone be so hurt and angry at such a sick woman....well, I asked myself that too. Someone said let her words be like wind that just goes over your head, but her words to me are like a hurricane... They did give my mom antibiotics and the UTI cleared up but the confusion and meaness has increased.....this is not a pity party or maybe it is..I am tired and want off the roller coaster ride,

call her gp and get her to hospital....

I just got your post today !!!!!!!!! From what I have read a UTI can cause a lot of discomfort and if the infection goes to the kidneys there is more discomfort including but not limited to fever. Therefore, if comfort is the goal, easing any discomfort caused by a UTI should be relieved. Taking antibiotics to treat an infection is not IMO aggressive. I would if in the same situation, treat the infection.

Morphine is really supposed to be for pain. If it is used when it isn't needed it will deteriorate & kill. That is what it does. Now I do know that on pallative or hospice they do prefer to keep a person on pain meds continuously rather than as needed for pain because the idea is comfort & they do not want the patient to have to wait for the pain to come & then have to wait for relief. I actually do not agree with this ethically or medically as everything is habit forming in that family of drugs. Therefore you are not really protecting quality of life at all. In fact you are setting the patient up to be less comfortable & having lower quality of life. What I was hoping hospice or pallative would be is a lack of invasive treatment or a lack of medical care & only be using comfort measures when absolutely necessary just like any of us would want for ourselves. I also hate to bring this up but I believe it bears mentioning that it is not as easy to get a patient on hospice as it should be as the agencies only want those dying of certain disorders or diseases which leads me to believe that it has nothing to do with the patient & everything to do with which meds they are able to use as in how much does the company or agency make off of morphine? compared to the drugs that would be used in another disease or at another stage?

Hospice almost always uses morphine. I don't know why. They sometimes use it they say for something other than pain. I also had a very bad experience with hospice for my mother. The problem is in the medical community there are not alot of options between over-treatment (i.e. unnecessary surgeries) or hospice. I don't know why. I am also confused as to why there are so many happy with hospice either at home or in a facility because I have heard your's or my story before. The best I can come up with is just like any med pros it doesn't just depend on the hospice agency used & the hospice nurse in charge of the patient it also depends on what the patient is dying of & what stage they are at. I do hate the BS they give you about how the agency will respect family wishes, there is no such thing especially in a facility because once again the hospice agency will want future business from the facility where they cannot hope to gain any future business from the family.

Hi, I've worked in a dementia unit for 10 years and I now research to improve the quality in Aged care homes. It is also possible that your Mum fell due to the stroke. And unformtunately there are so many reasons an elderly person falls. More unfortunate is that she hit her head. Being in a Hospice you're right they wont take invasive action. They will keep her comfortable. Giving antibiotics before getting pathology results is a proactive approach and common practice. And it's normal to not feel an urge to go to the toilet especially for someone who's had a stroke. In any kind of nursing environment, whether its Aged Care a hospital or a hospice all us nurses/carers wish we could give every one in our care 1:1 care, but there arn't enough of us to go around and if there were the funding wouldn't cover the budget for enough staff. So, we can't be there to stop every fall. I feel for you. It sad seeing someone you're not related to being so ill. The best thing you can do in regard to her UTI is assist her to take in fluids. When someone has dementia a carer is always on the look out for any changes in behaviour, it's a shore thing that something is going on. The general term for it is a delerium. Things that cause a delerium are dehydration, infection (thats why they look for a UTI first), constipation (morphine can cause constipation), medications (side effects or polypharmacy which is a combination of too many medications), depression, or an underlying medical issue the doctor will take bloods to diagnosed. It can also be cause by comorbidities (other illnesses). The nurses should be keeping an eye on how often her bowels are open, that she receives adequate fliuds and to keep her energy up (anything she'll eat chocolate, ice cream, supplements). The main thing to help your Mum right now is to keep her comfortable, so lots of reassurance and TLC, pain relief and pressure area care. Don't feel guilty taking a break, you need to keep your energy up and give yourself some TLC. My heart goes out to you. Good luck and hang in there.

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.

Iwentanon,
That surely sounds like they may have done that without consulting family?--or misrepresenting things to family trying to make choices under duress?
There are very fine grey lines to steer around, when making choices.
It sounds like you feel hurt and angry?

People should know, that the patient, the family who have POA, or the patient's legal Advocates, are the ones supposed to make the choices of what measures are taken/given, NOT facility staff--Staff are only supposed to administer what has been chosen/ordered.
That even holds for hospice.

People also need to understand, that some elders who are otherwise competent in familiar surroundings, may rapidly lose that once moved into ANY facility--no matter what level of care or conditions that caused them to be moved into the facility.
The older people get, the more vulnerable they are to stress-caused deterioration just from moving where they sleep from one building to another [something about going through doors--which causes most of us to forget what we walked into another room to do, for instance].

An elder can literally deteriorate from having to move to a different room--it may get better, it may get worse and end up in their rapid demise.
Those who have injuries or ills to cope with, often deteriorate faster, and stay so, or get worse, from the experience of having to go to the hospital or a facility for care. They simply cannot cope any longer, and they give up..

OTH, I have cared for those who rally, despite being told death is imminent---good supportive care, getting meds managed properly, and have loved ones around them may make a difference, but may not--
---OR, the ones who are flagrantly "ornery" and just decide to keep going, or those who are afraid to "miss something"---those keep going against all odds!
Some folks have far more gumption than others to keep going, while other simply lack or lose that inner resource, and give up faster.

I disagree--Hospice does not "kill with permission".
They are there to be supportive and offer what is chosen by the patient or the POA, within the guidelines of Hospice--
--which usually states that there will be comfort measures, and might stipulate SOME of what those are--but ultimately, the POA &/or the patient chooses what those are.
Others may not agree, may not like what is chosen, but it's not really those people's choice.
It is not supposed to be the choice of Hospice Staff to choose what measures are given, as long as the patient and/or their POA is there to delineate what measures of care make most sense for the individual.
They allow and support people's individual choices for their care.
The person could also stay home with caregivers, and STILL choose what they want to do--and their caregivers would also ALLOW them their choices--otherwise, we'd be forcing measures on people they didn't want, and which inhibited their reasonable progress towards death.

So in that, we may disagree, perhaps--
--it sounds like you feel it's important to give whatever meds might support and even lengthen life, even though those force a person to exist longer, without quality of life, and the end result is still death?
That, to me, seems inhumane.
But that is my personal opinion.
I do not force anyone to agree with it.
I only request those who take care of me, honor & support my personal choices, and that those who disagree, are prevented from interfering, when it's my turn at the Gate! I have already told those concerned, that when it's my turn, they help me celebrate and nurture that path, not artificially extend life when there's no quality left to it--not even using whatever "usual meds" I may have been taking to support life--only to give meds that help give pain relief....because at that point, there's no point in prolonging the inevitable--that would only cost them dearly what they cannot afford, and cause them more sadness, too.
Many others feel the same.
Most of those, have experienced others suffering prolonged discomforts of artificially prolonged "life" at the hands of systems and people who want to keep propping them up with the heart, diabetes, etc. other meds,
--when those have devolved to only prolonging worsening misery--.

I feel the same way about hospice.
the AL put her in a catatonic state within 10 weeks,
I much feel the same way, that they kill with permission?
Our 86 year old, I hope dies peacefully in her own bed
and does not have to go through hospice of any kind or
endure any of that horrifying picture you describe.
A person who had cancer and six months to live
went from one living only one month in hospice he went from
speaking, walking and wanting to play with his dog to being Dead in two weeks.

In hospice they do not have to give them there meds any more,
so he did not get any and they doped him up so he was out of it
and when he died they didn't even call his girlfriend (our 86 year old's daughter) of 30 years.

[ Answer 2tsnana's question » ] re: ministrokes/UTI's?

I am so sorry to have missed your post sooner.
I hope things are straightening out better by now?

It is common for body parts to fail to talk with each other due to strokes or from TIA's [transient ischemic attacks--circulation cuts off or narrows, but does not exactly close off entirely, or, it does not stay closed off].

Related to this, a person can lose abilities, then regain function, to greater or lesser degree, after each episode.
It kinda depends on how much brain is compromised, and for how long.
A larger portion of brain can be more affected at first, and there can be swelling, then as things settle down, the actual area is far smaller, so function returns, or, the blocked part clears entirely--depending on how long it was blocked, there may -or-not- be permanent damage to functions.

Yes, retaining urine can cause symptoms of UTI, too.

Yes, stroke or TIA can cause the nerves signalling the bladder and urethra to send confused or no signals that A] one has to pee, or/and B] the bladder is full.

When a person has been this far compromised, as you described, and/or is in Hospice, it might be appropriate to insert an indwelling catheter, to make sure the bladder stays drained, and, the person is never laying or sitting in pee'd linens. That helps skin integrity.
Anyone who's been in such a situation, knows what a blessing/comfort/safety measure an indwelling catheter can be [there's a tube into the bladder, held in place by a kind of tiny water-filled balloon, the tube leading to a drainage bag, from which pee is collected each shift].
Yes, hygiene for those needs taken care of--but it's FAR easier, safer and more humane than cleaning up repeated incontinence, or helping a frail, hospiced elder on comfort measures to sit on a bedpan and cough; better than tissue and illness damage from retained urine.
Some people live with them comfortably for years, though in those cases, temporary caths are possibly better choices.

As comfort measure choices: what those include, vary widely, from not giving anything but pain meds, turning, and keeping them clean, to offering antibiotics, fluids, even feeding tubes.
Some Professionals even classed Chemo and other drastic measures as "comfort measures"...though that seems really pushing things too far.
"Comfort Measures" are more what the person, family, and/or Advocate feel comfortable with. Unfortunately, still, too often healthier people only have the perspective of how they, themselves feel if they don't eat, don't drink, or don't take meds....they then frame their decisions for elders on their own personal feelings, which might significantly differ from someone in the process of gradually dying.
The end result is, the person is going to die [we all are, someday]; we must consider: Extending life longer [which food, liquids, some meds, etc., do, depending on where the person is in their process]----when a person has suffered bouts with illness/dysfunction that -can't- be fixed, -lost Quality of Life-, AND they are -UNlikely to regain much-, -if any- of that "quality" of life, then families or Advocates must choose---some cannot bear to face death, cannot face an elder dying; some elders who have been strongly established in their beliefs and wishes for this time for their lifetimes, suddenly change their minds, or doubt their long-standing beliefs.
This is where we help and encourage them to remember those beliefs and wishes; along with providing as much reasonable, realistic comfort measures as we can without blocking their progress towards the inevitable.
Loss is painful change--we tend to fear it, because in it we face our own eventual potential ills and guaranteed demise.
We see ourselves, though largely unconsciously, in our dying elders.
But at some time, we must allow them to finish their process of dying; help them through that with as much Grace and Love as we can muster.

Some really celebrate the process, others keep grieving and holding on--it is more themselves and trying to stop change, that they have fears for.
BUT, we choose; what a person or their advocates choose, is up to them; others are there as support, it's not anyone's place to condemn someone's choices, even if those seem unrealistic to some.
There's no more room for judgement in this, than there is in judging someone's choices of how they birth a child--some do it on fancy contraptions, on stirrup-tables, in water or leaning against a tree, etc.
As many variations as there are for birthing babies, there are for dying.
Just be supportive, be rational and logical as much as you can, be strong, and mostly, do it with as much Love as you can.
We have the honor of being nurse-maids at the gates of Heaven--both coming and going---so no matter what or how, there is Love.

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

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.

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.

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.

That is drinking the warm water with lemon like tea.

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.

Hi 2tsnana, So sorry, I too did not see your post until just now! Hope your Mom is doing better. In the NH that my Mom is in comfort care would include taking care of a UTI not just letting it go. The effects from having the UTI take a while to clear if they are going to clear up. Pretty odd IMHO that they would ask you to go in and see how she was doing if they felt like something might be going on. Keeping you in my prayers, please let us know how you are doing.