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

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.

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!

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.

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)))))))

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

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, 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, 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.

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.