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

Oh Jessie! I'm so sorry to hear this.

Do you have a local Hospice organization that might be able to do an assessment? Visiting nurse?

Hospice is something I'm thinking about. At the moment I feel like I'm in the middle of a maze, trying to figure out which direction to head. I wish there was a guide somewhere. Her doctor is like dealing with Mrs. Magoo, but maybe that is a good starting point? Or maybe just going to the ER and seeing if they will admit her and take it from there?

The thing we hear sometimes on AC is that we have no training in doing these things. That is so true.

Mom got up this morning and seems to be feeling a little better than she did last night. It is a relief. But I know that I need to get some kind of plan going for her. I know it won't be too far down the road. How do we figure out what is best when all options seem bad? I wish I were on a beach in Hawaii, instead of going through this maze.

Hi JessieBelle,
My mom ended up in the ER last week for dehydration and sever abdominal pains. It turns out she has diverticulitis. Anyway, the trip to the ER was very helpful. The staff were wonderful and they got me hooked up with a care manager who is going to help me coordinate all of her different doctors and make sure we're all on the same page. She also said that I could contact her directly anytime for emergencies or just concerns. Maybe if you took your mom to the ER you might get similar result. hugs!

Hey Jessie;( If you get a hospice consult, they should be able to tell you whether she is eligible for hospice or whether there is another route to take of medical treatment if she's NOT eligible. Don't they have to visit the home? And it might be a different doctor than Magoo. I know that your mother will resist, but you are burnt to a crisp right now. Please take care of yourself too - your brothers won't.

She is feeling so much better this morning after such a bad day yesterday. I feel like I dodged a bullet. This is nerve wracking. Glad there is a place to talk. I feel so totally incompetent in dealing with end of life things.

Getting and keeping a good doctor is so hard these days now that they are congregating in hospital clinics. My mother's first doctor retired. I had a very hard time finding her another doctor, so ended up going with UAB Geriatrics. She had a good doctor there. But the doctor went on maternity leave, then left for TX. My mother was then transferred over to Dr. Mrs. Magoo.

My brothers are indeed not helpful except for a phone calls. One will show up at the hospital and the other at the funeral. I don't blame them. If I were smart I would be doing the same thing!

Uncharted waters is what makes this such a tough job, Jessie. Getting a case manager sounds like a dandy idea!

I remember back in the day when the PCP did these things. How did it ever get so screwy?

Jessie, I'm so sorry to read about this development. Although I'm glad your mother is feeling better today, I also agree that a plan is in order. Having been through a few of these mental cyclones, I can understand it's hard to even clear your mind.

Maybe this will help?

The next time something happens, resolve to call EMTs and have your mother taken to the ER, even if she resists. Maybe you can hint that it will be nice to be treated by young, handsome men? I recall reading on another post that one elderly woman liked the EMTs for that reason (and b/c they paid a lot of attention to her!).

I've seen how easily they can deal with stubborn patients and work their magic; they're trained to do it and can do so professionally while I'm stressing out and trying to plan ahead.

At least the ER staff can run tests which can't be done at home, so you can find out for sure if there's anything going on. That would at least provide a specific treatment option or relief as to the UTIs.

I guess at that point you have a couple of choices, depending on her condition: (a) back to home, with hopefully some home care scripted by a doctor, or (b) a place that can provide the level of care she needs.

You can research as to option (b), so at least you have a head start.

As to the doctors, you may remember when I had problems in October with my father's last hospitalization. After seeing 2 of his regular treating doctors, they agreed that I was right to challenge the early planned release. One recommended a geriatrician who she thought was more suitable to treatment of the elderly. I will follow up on that.

If you're not comfortable with the current doctor, and if your mother is admitted, you can tell them you had a PCP or whatever, but that you don't have confidence in his/her ability to continue treating your mother. Or that you feel someone with more specialized experience should handle the hospitalization. Sometimes "out with the old and in with the new" is a good approach, especially if you're losing confidence in a doctor.

Perhaps then you'll get a hospitalist. That might even be better for your mother.

Hang in there; you're in rough waters now and probably will be, but the folks here on this forum are your cyber life preservers.

I wish you peace, for both you and your mother.

I missed a couple of your points:

1. How to make decisions when they're all bad? Unfortunately, the choice is which is the least worst, and the best for your mother and you, which sometimes can be a conflict in and of itself. This is when it helps to have some good assistance from reliable medical professionals whose nicknames aren't Dr. MaGoo.

2. Planning: step by step, with the first being diagnosis, then evaluation, then planning (which I know you understand but just are having some rough times doing so now). Sometimes even the discharge planners can help, either by making good recommendations, or even not so good ones to which you react negatively and decide to eliminate at least some of their suggestions.

3. This isn't easy, but try to pretend that you're handling this case for someone who isn't your mother - distance yourself, pretend you're the case manager for someone with your mother's symptoms. The more you can separate yourself emotionally (and I know that's very difficult), the more you can think clearly.

4. Make sure to take some down time for yourself, even if it's just a cup of hot cider, tea, coffee, or a quick stroll outside to luxuriate in the balmy fall weather.

4.

There is good and caring advice here.

I will also offer some information in a brochure about making touch decisions for those with dementia and infections and other illnesses. It really gave me a lot to think about. It explains why transferring to a hospital may not have the effect that you expect. I was surprised to learn that it may actually do more harm than good. It offers a lot of guidance on many issues.
See pages starting at page 21 regarding treating infections.
avoidablecare/wp-content/uploads/2012/04/Sharpe-Handbook-A-Caregivers-Guide-to-Advance-Dementia.pdf

Jessie, sorry to hear about your Mom, I know it is a handful dealing with stubborn parents. It can be a maze. Should I do this, or should I do that? What if I am wrong?

Believe me, I never hesitated to dial 911 any time either of my parents had fallen, and in my area there are also female EMT's and they are pretty much no nonsense, thus a different approach compared to the male EMT's who seemed more comforting.

I removed my parents from their geriatric doctor even though she was excellent... my parents didn't like her because [gasp] she was a woman and what do women know about being a doctor.... [rolling eyes].... she was their doctor for 10 years and got my parents to live to 94 and 98.

Anywho, a couple months ago I switched my parents over to the urgent care facility where the emergency care doctors also take in regular patients. So nice to just walk in without an appointment.... ok, sometimes my parents had to wait, but the office was literally just around the corner.

Thank you, everyone. Sunny, I save the PDF and plan on reading it later. I'm so tired at the moment I can't read. I had so many errands today. I stumbled into an old friend's memorial service late -- I had forgotten about it. On the way home, I got behind a city truck spewing diesel fumes. It choked me almost to death. And then came home to a hot house. GRRR. I am exhausted. I wish I could just lie down and take a nap. At least I did get get something for my mother's birthday I think she will like.

I had everything mapped out about what I was going to do. I planned to have Mom stay at home until I could no longer care for her, then see about placing her in a facility about 5 miles from here. Sounds simple, but it is a lot more complicated than that. Thank you, everyone, for your help and ideas. Think I'll take a 10-minute power nap to try to get back up to par.

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.

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.

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

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.

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........

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.

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.

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, 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.

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.

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.

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

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

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.

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.

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.

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 .