Situation is about to get a lot worse...

Thanks, surprise. I am looking into diets for my own issues but it's not possible for my mother. Not only is she an extraordinarily picky eater, but dental issues pretty much preclude vegetables until they are boiled beyond recognition and tons of salt on everything except the near pound of Reeses cups she eats daily. Can't even chew meat so doesn't eat it. Eggs and cheese (in the form of mac & cheese or cheese soups) are about the only protein she gets. She's 84 so along with not changing her living circumstances, sibs and I agree that her diet - poor as it is - is going to remain the same. She is on no meds - doesn't think she needs anything and cannot swallow pills anyway. Not all come in liquid form and based on my personal experience, I had one near-death experience from a reaction to Celebrex in 2001 and now another chronic issue directly tied to a 30-day regimen of a script I took over the spring. Not eager to force drugs on her. It's a waiting game now.

One thing I am exceedingly grateful for, because I'm reading horror stories on other threads, is how well my sibs and I are in sync on these decisions. A little grime lies beneath the surface - sister is mad at me for not getting involved sooner (she made it easy not to and I didn't want to - bad on me) and she's mad at my brother because he's got a good heart but basically clueless. I'm mad at her because she enabled Mom in SO many ways after dad passed in 1987. Can't undo any of that now. There will be no sib fights over what's left, if anything. I'm confident in that with how our personalities are. So that part of the situation is no cause for concern.

SHB would do well to talk to medical people who are trained in both typical medicine and the direction she's leaning. DH's cardio suggested this particular diet (created by Dr. Esseletyn, the author of Engine 2's dad) so we knew we would be safe there. He's not on blood thinners or anything else requiring a prescription, and his cardio is also vegan. Never thought we would go this route, but it's a means to a longer life right now. :)

Surprise, are you talking about eating more dark green vegetables? Just a heads up, if a person is on Coumadin (Warfarin) dark green vegetables interfer with it. Something to do with Vit K.

If it's any comfort, we switched to the Engine 2 rescue to help with our health issues. An immense amount of greens seems to help with many medical problems. It has slowed DH's heart disease, especially important since he can't tolerate statins.

A few things have occurred.

One, told Sister yesterday of my situation/diagnosis. Over wine, of course. She handled it better than I would have given her credit for. I've done more research on it and while I still have more appts to get specifics, I believe that a major diet change will be all that's needed to manage my issue from progressing rapidly. I may even be able to shore it up but I don't think it's reversible. What sucks is that I believe a chronic disease was triggered by a prescription for an unrelated problem. I am about to wash my hands of any more Western med intervention because every time I try to get help for things, I end up worse. Drugs have side effects, then you have to deal with those. Like Winnie the Pooh says, "Oh, bother."

But this morning, I had a revelation after a sleepless night. Changing anything about Mom's situation *now* will only be exchanging one set of problems for another. Via email, I proposed to my sister that we not upset the apple cart - until...

And that's the key here, I think. When to pull the trigger. We know changes are coming; it's an issue of when. "Eventually" is the best answer I have right now. It depends on the progression of the Alzheimer's. Sibs and I have agreed to no medical interventions for mom, except for pain relief when she's no longer able to fight it - which she does now. Won't even take aspirin.

Mom is fairly miserable right now, but she has always been that way. Any change to her living situation right now will NOT be in her best interest. Of that I am convinced. That said, I did find a website yesterday of local "senior care advisors" and I gave my phone # and email. Some base line research into options may satisfy the need to feel like we are being active in considering what comes next.

shb1964

I'm glad you got a laugh out of it :} Good luck to you and your mom as well.

I think I'd flip off the power to the stove from the electric panel. No point in mom deciding to learn to cook at this age!

shad250 - that made me laugh out loud. I love morbid humor. Lucky, Mom doesn't own a gun.

She needs the spunk of Anna Mae Blessing the  92 year old lady who killed her son, because he wanted to put her in a nursing home

Please, please stay in touch and let us know how you all are doing! (((Hugs)))

Thanks, all. I originally should have said I wasn't going to tell big sis "yet." She is dealing with some tough situations at work that have her beyond fried and emotionally fragile. As soon as she got over that hurdle and I have two more appts that will shed light on my situation, I will tell her then. I figured I should know more and have a chance to do some research first on what I'm dealing with.

What Mom wants versus what she needs - that's definitely where we are. She will never allow anyone in her house so though Sister and I believe home aides are the best option, and probably most economical, we'd have to be there to let them in. Sister and I are 9 to 5ers so that isn't a good option...yet.

Mom does still have the ability to do some self-care. Changing clothes (though she refuses...says she just did), bathroom (haven't faced that evil yet). We are not worried about her cooking because she never did. Her stove is only there so there won't be a giant hole in the kitchen! She only snacks at home and drinks root beer. Lots of root beer. Her diet sucks but it's her choice. We have healthy options for her; she doesn't eat them. She has always had a fear of choking, so rarely eats alone. She won't leave the house alone - her choice; she's very security conscious and knows she looks like a target.

We are aware that she may fall and it could be some hours before we know about it. That has already happened. But I've heard more stories of people falling in facilities. What Sister and I are thinking is that after the next "episode," that's when action will need to be taken.

jeannegibbs, thanks for the book info. I've read one (Leeza Gibbons' book, wasn't that helpful) and bought "The 36 hour day" but haven't read yet. Her quality of life right now is poor but any change we make will make it poorer. We feel she's safest, happiest, and at the highest quality of life point where she is now, but know that will change. We know several good facilities but should arrange time to check a few more. The rare times my sister and I can take a break and relax together, there's usually wine involved and we talk about fun stuff. We just need to start moving toward a solution.

Yes, we have POAs and Mom's resources are such that she'll be paying her own way for a while. Eventually, she will qualify for Aid & Attendance from the VA but not yet because of her income. Sister has had the harder work dealing with Mom - much of her own making which I warned her about 30 years ago but it's too late to change that now - and the thought of pushing more off on her because of my issues feels like an excuse, though I know it isn't. Should mention we have a brother who lives 2 hours away and his own wife has a terminal disease. He supports all the decisions we make and tries to help. Call me sexist but as a guy, he just messes things up. But we still love him. Former Army guy - can't understand why Mom won't receive an order and do what she's told. We've told him to find a support group where he lives to know what we're all dealing with (and for himself because of his wife).

Thanks for listening and sharing your thoughts. I guess misery does love company!

if all of it is overwhelming. then make a list. take baby steps.

once you start the ball rolling, even if one phone call...can help you move forward.

tell your sister about your medical problem. I would want to know. she got your back, next time you got her back.

there are people out there who can steer you in the right direction. when I placed my mom in AL. I went on a drive/tour with a placement agency. they didn't charge me (I guess they somehow get a cut from where ever mom/dad ends up)

but like I said. its hard to start because it seems like so much work. its like me I don't like to clean my house. but once I get started...I kinda get going like a steam roller :)

I'd add that dementia can last a long time and plans in part will depend on mom's resources - there are many levels of care and not all lead to skilled nursing but you may need help in navigating the options

Very few folks willingly accept strangers into their homes to help them and this often leads to placement in a facility but as JG says it often takes an emergency like a fall to make that happen

If you and sis have a likeminded plan in place for mom, the journey will be a bit easier especially when you need to step back for your own care

I will assume you have POAs in place. They make things somewhat easier. I have said this before, its no longer what they want, its what they need. Eventually Mom will not be able to be alone. And that can happen overnight. My nurses called that an episode. Or like my Mom her decline was monthly. Stubborn or not, decisions are going to have to be made. Does Mom have money for in home care or none so she can get in home healthcare from Medicaid. Will your diagnosis mean you will not be able to do hands on care? Can she live with either of you? Are you ready for her being incontinent and having to be cleaned up. Toileting was the worst part of caregiving for me. There is so much that goes with caring. I believe what we owe our parents is to make sure they are safe, clean, and cared for. As it has been said on this forum "it takes a village" to care for someone.

My sister and I have weathered all the parents stuff together, and she often tries to protect me (she's the big sister). But it needs to be a shared process and I recommend you tell your sister about your health. Even when we were both frazzled, we found the needed strength by leaning on each other.

Too many caregivers have their health impacted by caregiving, and you do need to make changes. But you can't let your concern about your mom's reactions guide the needed decisions. Even if you know she won't adjust, you still need to make decisions that protect her and the two of you. My mom has never adjusted and never will. She's in a funk. I'm sorry for that, but we still couldn't keep on the way we were. It just is what it is. You can do this, as a team.

Shb, I am so sorry for your diagnoses. I’m hoping for a good outcome for you. The stress of caregiving can make just about any condition worse. Since bedridden Hubby came home a year ago June, my fibromyalgia is in high gear.

Nursing homes are filled with people who don’t want to be there. Stubborn, nasty, combative people with Alzheimer’s, dementia and just general age-related being pissed off at what they perceive as what’s been “done to” them by having to be in the facility. I firmly believe that’s most of why these facilities charge thousands a month. You couldn’t pay me enough to care for some of the people I saw in my mom’s facility.

Changes need to be made for your own health and welfare. If sister’s Big Girl Pants are present and accounted for, have a frank talk with her. She is your sister, after all, and deserves to know since she’ll have more caregiving to do for mom. You can’t worry about juggling your schedule if you have an important appointment and Mom is pitching a fit about something. You can’t worry about Mom’s fit and Sister’s welfare. Take care of you.

Don’t be a hero, dear lady. You are going to need help and while it’s kind of you to worry about Sis, you have to be #1 right now. After you have this talk, dry your eyes and begin touring facilities. Decide with Sis what you’ll be looking for. Ask for their experienced help in getting Mom there. They are used to dealing with difficult residents. Apply for Medicaid if needs be. Or ask the facility to do it and admit her Medicaid Pending.

We all wish you the very best outcome. Please come back often and let us know what’s going on.

It is not safe for people with dementia to live alone past the very earliest stage. Safety may not be your number one priority, I don't know. There are ways to extend the time they can stay home, but they all involve accepting help. Stubborn or not, it sounds like she stayed where she needed to be after her broken hip. It may take another emergency to force the issue of making decisions.

While you are waiting for your big girl panties to come back from the cleaners, and while you getting in a little more rest time to deal with your diagnosis, I suggest you read Atul Gawande's book, "Being Mortal: Medicine and What Matters in the End." It won't give you an obvious answer to your dilemma, but I think it offers some excellent insight on what factors you should be considering as you think about your mother's quality of life.

When you say that your sister couldn't handle knowing your diagnosis, what do you mean? What do you think she will do? If she is to help you make decisions, I think it would be a real handicap for her not to know the entire picture. I know you are the tough one, but are you sure you are giving her enough credit for her own strength?

Is she still living alone? Now is definitely the time to bring in outside help. Unless sis wants to take a lot more of mom's care on herself.

You don't say what's wrong with you, but that's beside the point. You will need to self care and that, sorry mom, has to come first.
I'd talk straight to sis and explain the situation. Perhaps it's time for a SNF, or at least some in home aides.

Possibly Hospice, if you really think she doesn't have but 6 months. IS she able to move and take minimal care of herself? There's a lot we'd really need to know to be able to offer advice that is helpful to you.

I recently washed my hands of any care of my 88 yo mother, and you know what? She didn't even NOTICE. So much for all the stress of stepping away, she didn't even care.