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First of all, I just want to say how grateful I am to have found this group and how comforting it is to know I can come here and vent.


My mother has been going steadily downhill for the past few weeks. For those who don't already know, here are the fast facts: She's 84, had a stroke about a year ago, in a wheelchair since, has 24/7 care at home, bounced back pretty well, wanted to go out for dinners and theater whenever possible, and was making very modest, but meaningful gains in regaining some standing and some strength, which was good for her morale.


I don't know what happened that triggered her sudden decline, but she has hardly any appetite now, has a bedsore, and wants to be in bed most of the time. A nurse practitioner came today. Her vitals are good, the bedsore is under control, as long as she agrees to lie on her side frequently, which she is not crazy about. They will do blood tests and see if they can identify what's going on.


The nurse talked to me about hospice, because that covers a lot of care. I knew that was coming, but it has just put me over the edge. I can see that my mom is slowly surrendering and it is truly killing me. I am an only child and my father died when I was 7. I am divorced, with 2 wonderful girls, 20 and 16. Every single day since my dad died, I worried that my mother would die. Every. single. day. She has always bounced back from uterine cancer, breast cancer, hip replacement, fractured vertebra, etc.


I have friends and daughters and family, but I am the only one who is this close to her and fully responsible for her. In addition to the unfathomable emotional pain of losing her, I am worrying about the practical stuff. She rents her apartment and I believe they have a policy that when a tenant dies, the apartment must be vacated within a week. My mother has lived there for 35 years. She has a baby grand piano and closets filled to the brim. How on God's green earth will I figure out what to do with all that, in the midst of being flattened by grief? How will I go to work and keep my job? Be a mom to my (fortunately grown) kids? How, how, how?

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Xina, each hospital stay has caused my mother MASSIVE confusion. She gets back to the NH and settles back down in a couple of days.

Give this some time. And check what and how much of what meds mom has been given. I recall once my mom was in the hospital and they had no way to give her the pediatric dose of klonopin she was on, so they gave her an amount that was 4 times what she normally took.
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Xinabess they must be giving her pain relief of some sort, are they? So although her confusion must be frightening and worrying for you, it may be that the analgesics are mainly causing that? I hope you're getting clear answers to any questions you have. Poor mother, hope she manages to get over this - last thing she needs :(
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They moved her out of ICU into a regular room this afternoon. The urologists think she is too weak right now to undergo even a minimally invasive procedure. They want her to follow-up with a urologist in an outpatient setting. For now, she just needs to gain back some strength so that she can go home. She is very confused about what has been happening, where she is, and why she's there.
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It sounds like a staghorn stone is quite large and not a candidate for ultrasound blasting.
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I've heard of ultrasound for gallstones, have to check for kidney stones.
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Poor lady, Xinabess!

I have a vague idea at the back of my mind that they use ultrasound to shatter the kidney stone, don't they, has anyone gone into this with you? So completely non-invasive and definitely worth doing. Kidney stones are horribly painful, notorious for it - my fit healthy then husband needed morphine to cope with his.

Hope they get on top of it very soon, hugs x
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Update is that she's been stable now for over 24 hours and the plan is to move her to a regular hospital room. The only thing that needs to be resolved now is the large kidney stone they found (called a "staghorn" stone), which may be the source of all of this, leading to the UTI. Waiting to hear from urology doc what they plan to do about this. I suspect she's going to need surgery, though it seems to be minimally invasive. Still, after all she's been through, I can't bear the thought of her having yet another procedure, esp one that requires a general anesthesia. Ugh-o-rama!
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Again, didn't read each post. If ur Mom is renting they cannot ask u to leave if the month has been paid. I know places who allow rent to be paid by family who need to have time to clean out.
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Great news!
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Not to jump the gun, Xina, but so far so good - well done mother! I'm home after a full day of helping with a hospital audit and my feet hurt like billy-o (poor nurses having to do this every day) but it's lovely to get back to better news :)
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Well, Barb, I really don't think she was aware or thinking about NH vs homecare in terms of this sort of thing. She absolutely needed to come home or she would have been literally dying of depression in that place.

There is good news today. Dr says she is out of the woods and they are cautiously optimistic. If she remains stable, they will move her to a regular room later today. And she asked when lunch is served, which is amazing, as she has had zero appetite for weeks. Had to beg her to drink the ensures.

I believe doc said they probably caught it in time to reverse organ damage. Let's hope so.

I'm still upset with the nurses who said she was OK (home visits last week), but thank god she has come back from the brink.
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Xina; inspiring story here; two years ago, my mom, who has a "stable" pleural effusion, had it drained in the hospital and sent back to the NH. A day or two later, as her lung slowly came back to normal (I am hazy on the details) a pocket of bacteria apparently bloomed in the affected lung and sent her into septic shock. She was taken again to the ER via ambulance; was gasping for breath and was in septic shock. They wanted to vent her; my brother refused (mom has DNR, DNI, the whole 9 yards); bro asked if there was an alternative. There was! A BiPap machine.

They started IVs with two different antibiotics and the biPap. We were told by the hospitalist that he wasn't sure she'd make it, but she did!

Take hope! And know that if it IS your mom's time to go, it's her time. It has nothing to do with anything you did or didn't do.

Your mom WANTED to go home, which by definition means that there are not medical professionals around 24/7 the way there were in her rehab/NH setting. She hated it; she made a choice.

That was HER choice, Xina, not yours.
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Xinabess, I don't have any stories of the hospitals' managing to stabilise sepsis patients and get their blood pressures back to normal range! - so fingers tightly crossed, your mother's really fighting back. Big hugs, and go and get the best cup of coffee on sale near you.

And listen. You are not God. You are not a consultant physician. You are not psychic. You *have* to rely on the opinions of nursing, medical and care professionals because that's what they're there for. And they, in turn, can't see through bodies and can only go on what they can observe.

Would the 12 hours have made a difference? - possibly only a BAD difference. Suppose you had taken her to ER, her symptoms weren't clear, they sent her home again: would you have wanted to take her back later?

So for gratitude - be glad the morning aide was on the ball, pat on the head for her. And for compassion - feel for your mother, of course, but also go a bit easier on yourself.

Hugs to you again. I'm out today but I'll be thinking of you. Take care.
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Well, major scary update. Mom's in the ICU w UTI w spread to her blood (sepsis). They have stabilized her, got her blood pressure normal (it was way low), got antibiotics and fluids and everything else. Right now they think things are improving in terms of her levels and counts and stuff.

But, boy am I a mess. I've known for WEEKS that something wasn't right with her, wanting to be in bed all the time, eating less and less, tired and weak. But an NP came on Friday and wasn't alarmed about anything. She took blood and called me today with "alarming" test results; at that point we were already in the ER.

I feel so guilty because my mom called me at 10 pm last night and said she wanted to go the hospital. It was raining and dark, plus the aide didn't seem to think it was necessary. She had no fever, Anyway, this morning aide calls to say she had horrific diarrhea and thnks we need to get her to ER. So we did, but I keep beating myself up over not going last night and wonder if those 12 hours made a big difference. I guess there's nothing to do about that anymore.

If anyone has any stories of people recovering from these infections, I'd love to hear. No tragic stories please. I'm trying to keep the faith.
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Yes, Barb, my mother's apartment was a disaster, but it wasn't hoarding. She just wasn't cleaning anything or disposing of garbage. She was ordering takeout for every meal and just leaving the leftovers anywhere. She got the newspaper every day, read it, and just dropped it on the floor. Right after she went into the hospital for the stroke, I hired a cleaning service. Two of them went in and 5 hours later the place was immaculate. Now that she has an aide, everything is organized and clean. In fact, I recently mentioned to my mom how filthy the place was and she said, "I know. It was like a dungeon. I guess I was very depressed." Fortunately, she lives in a one-bedroom apartment, so her belongings are manageable. I think of these people who live in huge homes with basements and overflowing attics. Dealing with that must be a nightmare.
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Xina, just checking in. Do I recall that your mom had a hoarding problem that came to a crisis point right before her stroke? I assume since she's back home that her apartment is in an unhoarded condition?
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Living in the moment is great, but start planning how you are going to begin cleaning out your mother's home too. That piano isn't going to exit on its own.
I asked before, have you ever discussed end of life issues with your mother? Does she have Advance Directives, a Living Will, a MOLST form filled out and in your home just in case you need to call 911?
Is she on an alternating pressure mattress for that bedsore?
Good luck to you! But you still need to get a plan together.
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Thank you everyone. I am trying to stop panicking and live in the present. Geewiz, my mom is home w 24/7 care. Hospice services would take place in her home, not at a facility. I am beyond grateful that she is able to live at home, as the SNF she was in for a while was a total nightmare.

It's so weird how her decline, lack of appetite and lack of energy happens to coincide with when she started taking Remeron, an antidepressant that was supposed to increase her appetite and mood. It is a tiny dose, though, so that's probably not it. And I'm sure the pain of the bedsore is draining her energy too. Lab is coming to take bloods this week, so hopefully that will be revealing.
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Take a deep breath and slow down. Focus on getting your mother stable and talk to her health care providers about Hospice eligibility, as there is criteria for Hospice admission.  While she is resting call storage facilities, charities or go on line, which is easier. Have your daughters help; ask them to look at boards at the library or school or look in your local pennysaver for Goodwill Stores or Salvation Army or homeless women's shelters that can take some clothes.  
Get your mother's prognosis. Let them introduce Hospice, if that's the consensus of what she needs. 
Just because you choose Hospice doesn't mean death is imminent. She could rally and be taken off Hospice.
There are too many unknowns for you now. Focus on her, but in the back of your mind begin planning because it's going to happen, we just don't know when.
Have you talked about end of life issues with her in the past? My mom and I did a few times as I too lost my dad when I was 7. Over the years she told me what she didn't want- to be kept alive artificially, to be cremated, and a few other wishes. 
Again, take a breath and start making a plan.
Good luck to you. Most importantly is enjoy any time you have left with her. My mom passed away 4 years on 4/25. It's very hard to lose your mother. But unfortunately death is a part of life, and my mom is always with me in memory as we were very close.  You feel totally helpless and actually we are. 
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Xina, that point about your mother's consent to hospice service is certainly true. Of course it is: she's a competent adult, she makes the decisions about her treatment. But don't despair.

I think you probably aren't the best person to discuss this option with her. Can't you rely on her GP to ask her the "how do you feel things are going?" question that is often used as a lead-in to talking about palliative care?

If not, another thing you could do is ask a representative of the hospice organisation you're hoping to hire to come and discuss her care with your mother. Then rely on their tact. It's not like they're going to march in and say - well. Any of the things that tactless people would say. And, naturally, they will have extensive experience of working sympathetically with some patients who aren't competent and don't know what's going on. They'll know what you do and don't say to people who might be afraid.
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Xina, I'm losing track --- is your Mom at home or back in the nursing home? When my friend entered hospice, the admission person did ask her to confirm that she understood she would not be seeking treatments and understood she was entering hospice. When my Mom with dementia was signed into hospice, they did not pursue that line of questioning.
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Donate piano to a church &. Clothes to Salvation Army
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Me again. Someone told me that if I get hospice services, my mother will have to agree to it. I am her POA and health care proxy, but she is totally of sound mind. (Short term memory not good, but overall she's present and knows everything that's going on.) For sure, if she hears the word "hospice," she will flip out.
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Hi, slow down. The first thing you need to do is not focus on packing up this stuff. You can call around to different charities and different places to find out whether or not they will accept those items that are larger like the furniture in piano. Once you have that information put it aside. You may have to hire a company that can come in and get the house cleaned out in less than a week. Some companies can do it within a day or two so don't expect to have to do it yourself. And if you wanted donated they will deliver it wherever you want. As far as your mom the conversations you are having with her need to be very different than what they are now. If you want compliance and what to be able to get through to her you have to change how you speak with her. Stop trying to take over her life as this will only make it worse. Change your conversation tone and expectations and this will go a long way.
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Jessie - that is funny - borrow a piano! Realistically, I can't do anything to her apartment right now. She already feels like she has no control over anything, so leaving her apt as it is is important.
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Xina, the piano is a big concern. There are probably a few people who would love to take it home. I wonder if you could tell your mother that the people wanted to borrow it for some reason, and would she mind. Maybe the needed it for a concert or to teach children how it sounds. That would be one big worry off your mind and maybe the ruckus of moving it out wouldn't bother her as much if she knows it is going for a good cause.

The clothes I wouldn't worry about. They are easy to handle. It would be nice to get the piano taken care of, though, so it will be out of your mind. You'll be able to enjoy your time with your mother more without the albatross hanging over your shoulder.
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I understand you very well, I just lost my mother and I only ask God to give the strengs that you need in this painfull situation. God bless you.
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Also, I am trying to get rid of stuff in my mom's closets - for example, the 300 pairs of heels she will never wear again, but the closet is right near her bed and she tells me not to touch anything in there, so I don't. I mean, the last things she needs right now is me saying, "Well, you're clearly never going to wear any of these clothes/shoes/bags again, so I'm tossing them."

I am re-reading Roz Chast's memoir for the 20th time. If you haven't read it, run to the bookstore (or Amazon) instantly and get it. It's called Can't We Talk About Something More Pleasant?
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Nurse practitioner was here today and checked her out pretty thoroughly, asked about UTI symptoms, but I will call her and ask for an actual test (which involves what?)

I'm sure the building won't be that crazy. It's just all a huge swirl of fear, anxiety, and responsibility right now. Somehow getting that huge piano out of the house is a metaphor for all of it. I have actually had dreams of trying to get out of her apartment with the piano strapped on my back.
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Xina, first thing tomorrow call your mother's landlords and find out what the real terms and conditions are. If they sound like reasonable human beings, you could explain the circumstances and see if they can give you wiggle room; but the main thing is to make certain of where you stand.

Next, find out about storage units and removals/house clearance firms. Arrange to get some estimates; and make sure you know how much notice they need for a job. Then you'll know what to do about that, too.

Once you've got the information together, you can put it away in a file and not think about it any more. Sufficient unto the time, and all that.

Hugs to you. I hope the blood tests are helpful - let us know how you're getting on? Hugs again.
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