I have absolutely no idea of what I'm doing. My Mother is going downhill fast now. Advice?

I have not been able to come back to this site since my mother and father passed but here I am. You are getting lots of caring advice. I just wanted to add that I found in my mothers case that many medications can cause UTIs such as Spiriva, and a lot of other illness that sometimes Drs just pile on more drugs. Check her meds and do a little research. Ask around about different doctors. I only could get a resident dr but he turned out wonderful. Was for less drugs and my mother adored him.This sight is a lifesaver.

Get your mom's doctor involved with you and ask for providing a social worker for her. It has happened to my mom this year and she ended up with broken arm and leg. Then, the case manager from the hospital asked us to pick one of the facilities for a short terms care. You will feel relieved when you get a social worker for your mom.

I was wondering if this issue has been resolve Jessie- I'm new here and have some thoughts. I don't want to reiterate what you already know- so let me know.

This is when you call in the troops-NH, AL, visiting nurse-SOMEONE to help! Too tough to tackle on your own. You will burn out fast!

UTIs are serious. They will cause Dementia/stroke like symtoms. If she ends up in the hospital, have her evaluated for a nh and hospice. Some hospitals have hospice on site as do nh. She may need more care than u can give. Will give u a much needed rest.

I'm sorry you're going through this JessieBelle. I thought my mom was in her final phases a few times as she displayed all the symptoms and wow she's back to good now. Fully back to her old self.... never content or happy. ugg
Good for all the doctors, anyone she runs in to, good for anyone but the one who has to deal with her multiple times a day. Mine also has dr mrs. magoo's sister looking to her.. they're like each other's biggest fans. Her dr doesn't take kindly to additional observations.
Mine couldn't logically reason her way out of a paper bag anymore, except interestingly can, for show. But knowing the president's name gets her an automatic score.
When venting to ones I could trust and who know, have all said too bad for it, but wait for any event where you could sway her to the emergency room hopefully to a hospital with a neurological unit. Accompanied with pleas for help, as so good to see above. So much helpful advice and wisdom from the posters above. Will have to read that pdf. Its a lonely, scary road - a road less taken and the bumps are worse than wicked.
Take good care JessieBelle. Good vibes your way.

She needs to see a doctor ASAP. He/She can make a diagnosis of what should be done next.

Jessie, I'm just going to chime in here and say that I found that one of the things that I've found helpful is forging a real alliance with my mom's doctors so that I can ask them anything, either while mom is there or afterwards.

Most doctors are happy to explain what they are doing and why. I try to adopt an attitude of curiosity rather than challenge, if you know what I mean.

I have done a little reading and it seems that long term Bactrim is one of the recognised treatments for recurring UTIs and has reasonable success rates though I did not find an article about geriatric patients.

Jessie - there may come a point where there is no ideal treatment - but a matter of making a choice as to what will work best - and that may be an informed guess on the part of the doctor. Ex mil was 83 when she died. I don't know if she was on preventative antibiotics or not in the past months, She did not call as much as she used to - part of the vascular dementia - and she was quite unhappy and more difficult for the POA to deal with. I see some of the same things in what you post about your mother. Could you have a good frank talk about your concerns with your mother's doctor?

Well, that was fast. I saw that Bactrim can be used off-label this way. To me it seems it would just build Bactrim-resistant bacteria in her body. I'll have to revamp my way of thinking and trust the doctor.

Yesterday her doctor put her on long-term Bactrim. She prescribed one pill to be taken every other day. I've never heard of someone using Bactrim like this to prevent UTIs, but there is so much I don't know. I was particularly confused because the E. coli they cultured last time wasn't sensitive to Bactrim. The nurse practitioner gave her Microbid when the results came back.

I'm glad you mentioned this, Golden. The doctor said the antibiotic used would target the E. Coli specifically. Bactrim?? I consider it a broader sulfa drug, so it twisted my thinking on it. I planned to look more into it, so I'm glad you talked about this. UTIs are so hard on the person and the caregiver that I'm hoping it will work. But I admit my faith in the doctor is rather shaky.

Jessie - I will share about my ex mil who passed a couple of weeks ago. There are some similarities to your mother. Ex mil had diabetes type 2 and CHF for years and years. By Christmas of last year she was falling and at that time fainted and bruised herself significantly. Over the past year or so she had been having recurrent UTIs which were getting worse. At Christmas after the last fall she was hospitalized as an end stage heart failure patient and eventually moved to an ALF in the summer. She had some vascular dementia which affected her temperament, but was still capable of all her ADLs. She had some diarrhea problems in the later months. The UTIs got more frequent and in October she was admitted to hospital with one which they tried to treat but she developed septicemia and died a few days later. Her CV system was just winding down, and her immune system was failing. I found the information in the link sunny posted was very helpful in understanding what was happening and what will likely eventually happen to my mother who has vascular dementia. Hope this helps to give you another perspective. In the meanwhile look after you. This all is very stressful. (((((((hugs)))))))

I'm a RN and my mom has a lot of health issues ,I call 911 if there is a change in her condition . There are a lot of reasons she could be declining . Send her 911 and let the dr's eval her . I called 911 3 weeks ago mom didn't seem right , sent her 911 to the hospital I work at . They worked her up found a UTI. Also did a eeg to see her brain waves and she now has the new Dx of partial,complex seizures . Yup always call 911 she may need fluid or electrolytes who knows .... Go get her checked ... If I see my mom starting to decline I send her to the hospital and I tell them I want lights and sirens because things can go bad very quickly .

Each case is different, but if someone is in need of assistance and is resistant, I would consider legal action. I know it's tough, but it is an OPTION. That might give you some solace.

Each state is different, but in NC, when you petition the court to find someone incompetent, the things they consider are as follows: The capacity or lack of capacity for these things: language, nutrition-can they plan meals and prepare them, personal hygiene-can they handle it themselves, healthcare-are they making appropriate medical decisions, personal safety, residential- can they insure that they have safe shelter, independent living-can they run household, shop, bank, pay bills, handle financial matters, can they make change from a $20.00 bill, and can they resist financial exploitation. Memory isn't that important. Even if you have good memory, you may not have the capacity to make decisions for yourself. I would check the law in your state.

I'd get legal advice and retain an attorney if I attempted it, though the forms are normally found on the websites for the state or court forms.

These types of situations are difficult for me, because I'm not one to suffer with someone long term. If I truly believe that I know best and that I'm in the right, then it's only a matter of time before it's going to happen. I realize that family situations are different with different families. We all have our own special circumstances that make things a lot easier said than done. I get that.

I'm glad the link I posted with the tips for advanced dementia care is helpful. It helped me, though my loved on is not in the home. Still, there are serious decisions to make and that brochure gave me a lot of helpful information.

The factvthat she has memory skills is not what makes for competent in the legal sense. Perhaps some folks who know more sbout this will chime in.

My mom has vascular dementia, knows who we all are, knows the president, but can't reason her way out of a paper bag. I'm fairly certain if it came to it, she would be found incompetent. But as i said, I really don't know enough about it.

I think inbyour shoes, i wouldvtry to put the "what ifs""aside snd call Hospice to come. You don't have to ask her permission of tell her about it beforehand. Let them do the talking.

Babalou, I put your question on the back burner to think about. You had some good points, but the logic just wasn't working for me. The missing element is that you cannot legally make a person do something if they have not been declared incompetent. You cannot make a person go to a nursing facility if they can still do their ADLs and are not incompetent. You cannot make someone go to the ER if they do not have some emergency problem. What we can do is decide what we can do and let the chips fall as they may. I could decide I am not doing this anymore and my mother would have to go into AL, then perhaps ultimately to a NH.

My father who died in 2012 was the one on the spectrum. My mother is a hermit and may be mentally ill. She has an unusual dementia-like disorder that is different than most. Her memory is mostly still intact, but she has no reasoning. Still she is not legally incompetent. She is running her own show, yes. And I respond to it the best way I can, which can be crazy making when someone is mentally ill and physically infirm.

Great advice from all concerned. Stay strong Jessie and don't forget you have our support.

So much great advice here, I can only add my support and good wishes. Hugs!

This evening I am reading the caregiver's guide to advanced dementia that Sunny gave the link to. It is excellent so far and I recommend it to anyone who cares for someone with dementia at home. I haven't gotten far in it yet, but it is hitting some key points that people who care for loved ones at home. Thank you for showing this to us, Sunny. It makes me realize that I am not alone in the way I feel. I feel almost normal now. I'm hoping this will give some good information on how to work through things when support is weak or nonexistent.

JessieBelle...GardenArtist is a wonder! I would echo the advice of deciding that the next time your mother needs medical attention (you will have to decide what that looks like), that you will call EMT's to take her to the ER. I have done this before and, because it wasn't a life threatening emergency, my loved one just needed immediate medical attention, they even came to the house without sirens and hoopla. That kept things much calmer for everyone.
Meet mother at the ER and start pushing for care. Talk to everyone and anyone who will listen to your plight. Ask to talk to a social worker to get a plan to coordinate care whether or not she is admitted. I used this phrase "Please, please help us...we don't know what to do...we need help." It didn't take long for a caring nurse or physician assistant to get on board and point me in the right direction to get needed care. Good luck, dear.

Jessie, I'm going to ask a REALLY rude question. Why is your mom running the show? You've given up your life to care for her and she says "no, I won't go to the hospital and rehab" when it sounds to all and sundry as though THAT is what she needs. The dementia patient is running the show?

I know that your mom is tough and maybe a bit on the autism spectrum ( I think you said that, yes?) and you love her and don't want to hurt her.

But you are very, very clearly getting close to the point of burnout. You need either more help on a day to day basis, or a social worker or case manager you can check in with. I think you have an opportunity here. To call Hospice and have them in. Especially because mom thinks you should "alert the family". Hospice will give you an idea if there's something to alert everyone about and if approved, will give YOU a lifeline for advice.

Rant over. I hope she's truly feeling better, and that you are, too.

There was something that bothered me. On Sunday (the bad day) afternoon she said that maybe I should call my brothers and let them know. "Let them know what?" I asked her. Then I thought about how I messaged my brothers and SIL after my mother fell so they would call her. I got a bit paranoid that she was faking how bad things were, hoping I would get my brothers to call her. Would she do something last this? Yes, I wouldn't put it past her. Even thinking about it p*ssed me off a bit.

Jessie, oh dear, I can understand your Mom wanting Thanksgiving on Thanksgiving because she came from an era where everything was closed on Thanksgiving Day, even the grocery stores, shopping centers and gas stations, so people had time to do a 3-course meal on Thursday.

Hardly anything is closed now a days, so I can understand your SIL having Thanksgiving on Friday. I use to do Thanksgiving on the previous Sunday. In fact the grocery store would cook my meal, refrigerate it, and then I would heat it up, well worth the cost and less stress. I am no Martha Stewart.

Well, Mom is back up and doing fairly well. I talked to her Sunday about going to the hospital and rehab, but she said she didn't want to do that. Then yesterday she was better, and today even better. It does get exhausting. I'm afraid that by the time she reaches the end, there won't be much left of me. I know I wouldn't be able to keep her at home if she can't do her ADLs. Toileting and bathing herself are important for her to be able to do for herself, since it is not something I want to do for her. She knows this already and would not want me to do these things, either.

Today she is mad at my SIL because she is having Thanksgiving on Friday, instead of Thursday. Mom is very angry and crying because she is not being shown due respect. Sheesh! This from a woman who never had anything to do with caring for her own parents.

Hey Jessie. Don't have anything to add to all the great advice your getting. Just wanted you to know I'm following this thread and wishing you the best. You'll get through this........

Jessie, I am so sorry to read about your mom. How is she doing today? It sounds as if you have identified a facility nearby once momm's care becomes too much for you. That is great planning! Is the facility continuing care? Nursing care available? As others mentioned evaluation by hospice sounds like a good idea and a trip to the ER.

Very good suggestions here, just remember you have done your very best for your mom for quite sometime. It is very hard to hand that care over to someone else but in so doing, you would be able to relax and be more a daughter to her and let the pros deal with the medical stuff.

Thinking of you and mom.

Oh Jessie you always come over as so knowledgeable and organized. So sorry this is so troubling for you. I know Mom is not always the kindest to you but you have stayed and will stay the course.
Do you feel you can continue to care for her till the end? When she is appropriate Hospice can be a great help to you. just knowing there is someone to call 24/7 is a great comfort.. They care for you, not just your mother so you can call about anything and get reassurance.
You will need more help so one way or another you need regular visits from an aide to help with bathing and transfer.
I think as others have advised a visit to the ER is on the cards and they can sort out if this is all due to UTIs and start the correct antibiotics or abmit her for a few days. I believe she would only be in the hospital for 3 days to qualify for rehab which would give you a good break and a chance to organize things at home if you have to prepare for Mom's health to continue to worsen. You can do it Jessie Belle I know you can. Big Hugs

Hi Jessie, how are you and your mom doing today? I'm really sorry you are going through this, and so sorry about your friend.

It is very hard to feel good about your decisions when you are exhausted. My grandma had a few years where she was having small crises and health issues that became increasingly worse -- by the time she became really sick we really felt like we were in a fog. I really wish doctors understood what it's like to be the caregiver, and could recognize when you're worn out. My sister thinks every geriatrician visit should include a brief visit with a social worker or counselor for the caregiver, and I think she's right.

My grandpa is having recurrent UTI's now too and we cannot figure out if he just needs to have stronger antibiotic to knock it out (eg IV antibiotic) or if he will always have them because of his age-related issues. Looking at Sunny's brochure, I'm wondering if his body is just starting to "slow down" and can't do it's job anymore, but the doctors don't want to say that to us.

I guess I just want to commiserate and say that sometimes doctors also do not want to make hard decisions -- they don't want the responsibility of admitting someone to the hospital, they don't want to have a long, possibly difficult conversation they won't get reimbursed for, don’t want to get sued for giving the “wrong” advice, or maybe they don't want to be the face of gloom and doom -- and they end up making the caregiver feel as if the caregiver is entirely responsible for looking into a crystal ball and guessing how to best handle a really complicated and murky situation. It feels like you are making these decisions alone but you are not -- every medical professional and case worker you encounter is assisting you in your decisions, they just might not be doing a very good job. My husband laughs at an expression one of his co-workers uses: “Stop assisting and start helping.” I didn’t get what he meant until just now.

I wish both you and your mom comfort and I hope you encounter more helpful professionals who will let you know you are not alone in this process. You are always very compassionate and kind on this website -- I hope you will find people who are the same way in your journey with your mom.

Hi Jessie -

Sorry I'm late to the party but I totally relate to what you're going through. You are alone with the decision (or it feels that way) and you don't want it to be wrong. Can you call your mother's doctor and explain the symptoms to her? If not, I would take her to the ER the next time she seems to be weakening or suffering. Old age isn't curable but a lot of those infections are.

I understand how you didn't have a plan for this. You might expect them to get weaker and more impaired, but getting acutely sick is something else. It happened to my mother several times since I've been her taking care of her. Twice I decided with my sisters' input (thank god they were around and came over) to call the EMT's, and the last time her doctor had her admitted to the hospital based on blood work.

If I were you, I would use whatever help I could get from your mother's doctor and your brothers, and then err on the side of caution. The last thing you want to have to live with is having her die of something that potentially was treatable.