Last Updated: Feb 21,2013
All the best, MoodyBlues!
Sorry for your loss, saptech.
Quick update: She's home! The cats were so happy to see her, and vice versa. The first thing she said was that she wanted to eat. I had watched her eat dinner at the hospital, so I knew she couldn't really be very hungry, but I heated up some macaroni and cheese...and then mushed it all up with a fork. She's on a soft/pureed food only diet for the time being, until her throat heals. But she ate the mac & cheese and loved every bite. Then she wanted coffee, and I'd told her while we were still at the hospital that she could have all the coffee she wanted once we got home, so I gave her a cup of coffee and she was pleased as punch.
She looked super dejected, though, when I told her that I can't let her have free access to her junk food supply any more. First, I'm not about to puree Cheetos or cookies, but the bigger issue is that I can no longer feel safe letting her eat with no one present. I mean, she'd be dead now if I hadn't been with her when she choked the other day. So we're going to have to figure this all out, as munching on junk food has become her biggest form of entertainment.
My mom, even after months of munching on junk food all day (and that's in addition to three actual meals per day!), and being 100% sedentary, weighs a whopping 110 pounds. If I even LOOKED at all the food she eats, I'd weigh 400 pounds. It's not fair!
In the morning I have to pick up antibiotics for her and stop and get a lot of soft foods, like applesauce, pureed soups, oatmeal, etc.
I'm going to contact the hospice coordinator I spoke to in the hospital, as I think it's time now to accept that we need additional care. It was a decision/transition I had put off for many months, but I'm ready now.
I really haven't gone into this personal stuff on these boards, but the truth is that I've spent the last 1-1/2 years doing everything I could to keep her at home, instead of shipping her off to a nursing home. She's lived in this house for 40 years, and I just can't fathom the idea of having her in a cold, impersonal, sterile, strange environment for whatever's left of her life. So until I'm physically unable to keep this up any longer, she'll be here where I strongly feel she belongs.
Finally, thanks so much for the warm thoughts and prayers. Even though I've never met any of you in the 'real' world, it's comforting to hear kind and supportive words. You're a great bunch of folks.
ETA: Here's a souvenir!
ETA: And another...from that very chaotic night.
So good news and bad news, eh?
Several years ago my mom was placed in assisted living. Although the way she got there was all wrong, I have to admit that the services that the facility provides have helped her overall.
Having other people around means that she never has to be lonely, and the staff makes sure that the people there do socialize, get enough exercise and have their diets looked after.
My mom's apartment is made up of two rooms, so she has a separate bedroom and living room. There's also a kitchen area with a fridge and microwave, but no stove or oven. All of her stuff is there, and the rooms are decorated per my mom's exacting standards. To be quite honest, I wish that I could move in there and be taken care of like that!
Assisted living is a lot different from the old school nursing home. Although there is some medical staff (mostly CNAs), the assisted living residents are mostly in charge of their own lives, and can come and go as they please. Except of course for those who get lost easily, and those people are still given as much freedom as is safe; they're not locked in their rooms or tied down.
If your mom's insurance covers it, you may want to look into an assisted living facility. The one that my mom is in is operated by her church, which gives me more confidence that they'll treat her right. If you want to contact me offline about what it's like, please feel free to do so. I can show you photos and some video that will give you an idea of how it looks.
Unfortunately, assisted living isn't appropriate for Mom. My in-laws moved to assisted living for the last few years of their lives, so I'm familiar with it, but it's not a viable choice for my mother. The last year and a half has been a downward spiral of her becoming weaker and weaker, despite not having anything organically wrong with her. She was put on bed rest following a fall that aggravated an old broken hip injury; she didn't break anything, but the pain caused the doctor to order bed rest for three weeks. Everything changed during those three weeks. She went from being independent, even going out on her own [with her walker], to being in a wheelchair and then, finally, confined to bed 24/7. She's no longer able to get up to shower, so her aide gives her sponge baths. She can't use the toilet because she's too weak to walk in there. I bought her a bedside commode a year ago...but it's still in its original, unopened package (I'm going to donate it to a convalescent aid society nearby), because she now uses diapers all the time. (Side note: it's a very humbling experience changing your parent's diapers.) My point being that it really would have to be a nursing home, as she cannot do anything (cook, clean, laundry, bathe, walk, talk on the phone, etc.) on her own any more.
Sorry to hear that.
I've seen enough elderly relatives and friends' parents go into declines like that. IME it usually means that death is around the corner. I trust that you're preparing as best as you can for that eventuality.
How about hospice care? Since there's no disease to treat, or to expect a recovery from, that seems like the best fit. Of course you're the one who knows best. I'm just putting out ideas.
Sorry to hear about this. Take care of yourself and we're all wishing for a quick recovery.
Yes--but it's taken a while to get here. I can't exactly say I've been in denial, but I've been in sort of a twilight zone-ish place between denial and acceptance. I mean, I can talk to someone [like a doctor] and hear the appropriate words come out of my mouth regarding Mom's condition and its realities. But the rest of the time I've been in this state of refusing to accept it, and basically convincing myself that things will improve.
It's a great idea--and one that I had brushed off until two days ago. I met with a hospice coordinator at the hospital and he did a great job of filling me in on all the things they can do. One of Mom's doctors had suggested hospice care last summer, but I wasn't there yet. When I met with the coordinator the other day, I still wasn't QUITE there--I told him I needed to process everything and I'd get back with him. Today, I did. He's sending a nurse here tomorrow to do an evaluation and get services started. I still feel a bit like I'm signing Mom's death warrant, despite being reassured that acknowledging the need for additional help, as in hospice, doesn't equate to imminent death, but it feels that way. He even made it a point to say that they have about a 7-8% 'graduation from hospice' rate. So you never know.
The hospice nurse left a little while ago. She was very nice--warm and upbeat--and I feel good about the decision to go ahead and start hospice care. It's still a tough mental transition to make, but it's time.
Mom's driving me nuts asking for food she can't have right now. Her aide told me she asked her to go get THREE veggie burgers from Tops (a fast food restaurant near us). Last night, she asked me to order TWO pizzas for her. And she wants potato chips, damn it! Sorry, but I'm not pureeing ANY of those.
Wow what a hectic story,
Well I am just really happy she didn't pass away!
Hmmm ja I will never forget the times my dad had Multiple Myloma (Yes okay I KNOW I can't spell haha!! ).
It is bone marrow cancer.
I will NEVER forget how we found out that my dad had it.
I used to never believe in miracles but I do today.
It was a miracle how we found out that is for sure!
My dad is obsessed with the big blue he is CrAzY about fishing and killing innocent fishlings that already have a low IQ and likes beating them over the head with a fishing baton!
Anyway let me get back to the story!
My dad is Paddle Skiing on the Indian Ocean in Mozambique (really freaking messed up country where you can buy an AK-47 for 50 Rands dodgy man! Just dogy! )
And my dad is obsessed and catches The Cuta (I think you Yankies call them the "King Mackerel" in Yankie Doodle Land???)
So try to remember my dad is out I'd say a really good 4 or maybe 6 or so Kilometers out from the shore give or take?
I remember being in my old man's Ski Boat and you can hardly see land it is really tiny.
It is almost the same on a paddle ski.
BUT all of a sardine this mother of mother's of a Tiger Shark BITES the poop out of the back of my dad's paddle ski at the back!
Very often surfers, body boarders and paddle skiers them sharks see them as tasty Turtle Food and want to have a quick snack!
Ahhh gotta love nature!
So once this 3-4 meter Tiger Shark smashes into the back of my dad's Paddle Ski with it's big freaking jaw my dad (naturally!) shits in his pants!
SO he and about 6 of his friends from what I recall start GUNNING for the shore and runnin for their little lives so they become a quick little snack!
But as my dad gets off his paddle ski at the shore break in all of the panic my dad gets hit by accident one of his friends just nips / bumbs the geezer on his rib cage with my dad's friends paddle ski so it broke the rib cage slightly.
And if it hadn't been for my dad's friend that was freaked out by the thought of becoming shark bait then my dad would not be alive today.
My dad would be dead now.
So then my dad with 1 broken rib is in some pain and all that.... BUT then it didn't heal after a long period of time...
And that is when we realized something was very wrong!
It took the geezer about i think it is now 8 years since he got cured?
Ja that is right it is 8 years now>
BUT to make this Oprah Winfrey material story even more "worthy" there is only one way I think that was back then that you could do to "cure it".
You do a Bone Marrow Biopsy.
But to do this you need a match that is VERY close to the hosts Bone Marrow itself.
You need to do a bone marrow transplant with the close relative lose to your own DNA and what the doctors do is they somehow "swap" out the immune system out of the sick patient and they make the new bone marrow they pump it up to make it like a young childs.
My dad's immune system is basically only 8 years old give or take. Don't ask me how the hell they did this though okay!
I don't think I am explaining it very well at all but it works like crazy though.
LUCKILY my dad had 5 siblings.
Wendy passed away due to cancer too.
3 Sisters originally but 2 today remain.
And 2 brothers.
They all went for tests (also Wendy when she was still around) but ONLY 1 out of them all was not only a "sort of" match but Uncle Stuart was a freaking like 99,99% match!!!!
The others did not even get over single digits but Uncle Stuart was like a freaking REALLY good match!!!
(THANK YOU GOD)
We couldn't believe our luck!
If it hadn't been for our now traitorous Uncle Stuart my dad would not have made it either!
(My Uncle Stuart is a TRAITOR because he immigrated over to that CrAzY place called Yankie-Doodle-Land in San Diego and I miss him he is such a cool guy.)
My dad still has serious problems today because it is never "perfect" when they do the bone marrow transplant so my dad's toe nails keep falling off and he can't eat anything spicy at all.
And we all lived happily ever after!
That's understandable--you're in grief. Denial is one of the stages of grief, and none of us are immune to it. You're already getting past it. You can do me a favor by never beating yourself up over how you might have handled things differently.
The etymology of "hospice" doesn't have anything to do with death. I didn't know that when my mom had booked our lodging in a middle-eastern hospice. It freaked me out so much that I was ready to sleep in our rental car until she relented and got us rooms in a real hotel! It turned out that in that case, the hospice had no dying people, and was more like a hostel. I'll still take the hotel!
Good on you for being brave and doing what needs to be done! You're also being a good example for me to follow when my decision time comes. Thanks, and best wishes! :knuddel:
Strange use of the word hospice!
It's tough. When the nurse was here this afternoon she wanted to start the morphine and also give Mom Ativan, and I refused on both counts. I'm not going to exacerbate Mom's death with narcotics, which she doesn't NEED right now and would only be used to make it easier on everybody AROUND her. No. Not going to happen. I was incredulous when the nurse suggested both, and I questioned the reasoning for each of them. She said "her respirations are at about 25 right now" for the morphine--and I said, well, morphine will SUPPRESS her breathing, so, no. And for the Ativan she said "it'll make her less anxious," to which I said "SHE'S ASLEEP. How much less anxious can she be?!"
As I found out the hard way, "hospice" only seems to have the grim connotations here in the US of A. In most of the world, it's a common term for forms of lodging that predate the commercial hotel.
Good call on the meds. It looks like that nurse was more interested in making her own life easier than anything else. I hope that's the exception, not the norm!
Has your mom set up a living will and/or appointed someone as medical attorney?
I'm really sorry to hear about your mother's predicament, but I'm glad she was saved.
This makes me angry. I'm so glad you refused. My Mum had cancer and once they administered morphine she went into a rapid decline. When my Dad called me and told me she was really bad I came, but it was too late. She was unconscious (or at least unable to open her eyes and talk; she may have been able to hear us) for the final week of her life, and I never got to say goodbye.
I really believe that some medical staff "help" seriously ill patients towards "release" to make everybody's lives easier, especially their own.
My Mum didn't actually die of the lung cancer, but caught pneumonia. After she had died, I discovered some of the medication the nurses had been administering, and one of them, a supposed anti-emetic, had serious side-effects of producing fluid on the lungs and hindering respiration. I vented my spleen at the doctor and he just stood there looking embarrassed because he couldn't counter my accusation - maybe, in hindsight, because he knew I was grieving.
I applaud your refusal to let them dope up your mom. You would have lost her all the sooner if you had. Make the most of her while you can.
As soon as the nurse left I asked my good friend Google for info on dying patients, morphine, etc., and guess what I found? TONS of comments from people whose loved ones were drugged to death. My mom has NOTHING wrong--it's not like she is dying from bone cancer or some other horrible, painful disease. She's just old, and ended up at this point by refusing to do her exercises. Long story, but a fall landed her on bed rest, and afterward she REFUSED to do the exercises prescribed, so it started a downward, very VICIOUS cycle of inactivity, weakness, more inactivity, more weakness, etc., until she finally ended up confined to bed 24/7, unable to even keep herself in a sitting position. That's why I knew instantly when she was choking that there was no way I could position her AND keep her in position to do the Heimlich maneuver.
My long-winded point being that she's not in any particular pain, just her normal pain caused by arthritis in her right knee. Morphine? I don't think so! And that whole bullshit song and dance for the Ativan...ANXIOUS? She was asleep, for heaven's sake.
Honey, you're looking at her. It didn't seem real, though, until last week when I had to take the documents to the hospital. I have both Power of Attorney (for financial and personal matters) and Durable Power of Attorney for Health Care. After I left the hospital I went to Chase and Bank of America to file the papers there, too. I had put that off for two years, but since the documents were in the car with me anyway...and Mom was in the hospital...I figured maybe NOW would be a good time to do it.
Thanks. My mom has been saying for quite a while now that she wishes she were dead. So my best friend asked me the other day if I had asked Mom if she's mad that I saved her life, and I hadn't, but I did after that! Mom said no, she's not mad.
Thanks. It makes me mad, too.
That seems to be the pattern that my good buddy Google told me about. It's weird, you know, the hospice coordinator told me in the hospital that many times, once a patient starts hospice it's only two or three days before they die. I had heard that before, as well. Um, duh! Load them up on unnecessary, organ-suppressing narcotics and guess what you get? A dead patient.
I'm very sorry, both for your loss of your mother and not really getting to say goodbye.
That seems to be the modus operandi. But I assure you it won't be in THIS house. Last night, after sobbing on the phone to my best friend, telling her that Mom had basically slept all day, and telling her about the nurse and the meds and all of it, I went to check on Mom. To my surprise she was sitting up, alert, watching TV, and wanting ICE CREAM!! (Actually she wanted pizza, but with the soft diet thing that's a no-go. So ice cream it was.) I sat with her for a couple hours, chatting, watching TV, giving her her antibiotic, giving her some more juice to drink, etc. If I had let the nurse dope her up as wanted, Mom would've been out cold.
Good for you!
Thanks--they're going to have a tough time getting past me with those narcotics!
My mom has been downright compulsive about getting exercise, and is still religious about doing her PT. She took a fall six weeks ago, and despite a broken toe and lots of bruising, the most she missed was 4 Sunday church services and a retirement party in the city. And most of that was weather related!
My worst fear about her is that she's in such good physical shape that her brain may go long before her body does. If and when that happens, I doubt that I'll have any financial power to execute her wishes. The bankers who took advantage of her the last time will no doubt force me out again. You did well to get financial power of attorney!
After reading your story, I felt the need to ask my mom some questions today about what happens if she's no longer able to function in assisted living. And as usual, she put me off. Frustrating!
I have durable medical power of attorney, but when she had her breakdown I discovered the hard way that it's useless if someone else decides to take charge. I hope you never have to face anything like that! But it's a good idea to have a lawyer on retainer before it can become a problem.
My Mom and Dad both had hospice care at the end (Mom had brain cancer, Dad had lung cancer) and they were great, I don't know how anybody can do that job. But I have heard the horror stories about the ones who just want to speed the death along. Honestly, your Mom doesn't seem like she is ready for hospice care yet, being that she doesn't seem to be suffering or on the brink of dying. Good for you for standing up to the nurses, your Mom is lucky to have you. You may want to consider putting off hospice for awhile.
It seems like he is contradicting himself about her chances once entering the hospice.
I agree with Gmash . Maybe you should think about it more.
Good for her. That's how it should be for people our parents' age these days, you know? For almost two years I've been pointing out to my mom folks, like Betty White and Bob Barker, who are her age or older and are *BUSY* working their asses off. And every time I see or read about someone who's 100+ and still working or going to the gym, I tell her about them. It's like, look, if they can do THAT, surely you can do your bleeping exercises!
I understand probably not wanting to go into detail here, so don't, but I just want to say that you REALLY need to look into all this stuff now, before something happens. I have no idea how you were pushed out, or how bankers took advantage of her, but there MIGHT be recourse if you have time to get it done. I haven't gone into here at all but we had something really bad happen--my sister and her husband defrauded my mom out of her house--but we found out (it's a LONG, complicated story, which I'll skip!) and were able to reverse it before it became irrevocable. (Side note: My mom SHOULD have had them prosecuted for fraud, as I don't think $1 million worth of fraud is anything to sneeze at, but she chose not to. They're allowed no contact with her and I had them on the hospital's security list when Mom was there.)
Yeah, like I said, I'd been sitting on that for two years and only just filed the papers with Mom's banks last week, but only because they were already in the car with me. I just never wanted to take that step.
You NEED to persist until you get some answers out of her. I can't stress strongly enough how things can change from one moment to the next, and how once you're in a crisis it's too late to figure all this stuff out. Try sitting down with her and starting off with something like, "Mom, I know this is difficult and perhaps uncomfortable for you to talk about, but..."
Would you feel comfortable explaining what happened?
Our estate attorney is one of the best in SoCal, and very highly respected. We don't actually have him on retainer, but any time we need anything he's just a phone call away. He's even come to the house a few times.
Sorry for your losses.
I know...it takes special people. Ironically, I've now been told by numerous hospice people that respite care is available for me--and *I* used to do respite care. In the '90s, while living in Dallas, I volunteered at an HIV/AIDS clinic; I was certified as an HIV/AIDS counselor, so I could, and did, give clients their test results; I also taught classes on HIV and AIDS; and I did respite care on weekends. (I used to be *SO* active, before damned illnesses made me a home body. ) So it's weird having people tell me about something, as if it's new to me, that I used to provide for OTHER people.
That's the distinct feeling I got the other night, and I'm so glad I refused both the morphine and Ativan.
Thanks, but no, she really is ready. In fact, one of her doctors brought it up some six months ago but I wasn't ready yet and didn't believe she was, either. Now...it's definitely time. Every single time I approach her room I think...oh dear...is this going to be THE time? You know, when I find her dead.
I know. I agree. Sort of.
I THINK the point he was trying to make, or imply, was that people who are near the end tend to die quickly once hospice starts, as in it gives them license or permission or something, to let go.
But when I realized that I had heard, numerous times and from numerous sources, that people often die within a few days of starting hospice, I got to wondering what that's really about. I'm sure that for some people, it really is a matter of being very ill and then letting go within a few days of starting hospice, but that can't explain ALL of them. After reading about so many people who died in what their families considered a drug-induced speed-ed up manner, I saw it in a whole new light.
No, unfortunately, it really is time.
Things are going downhill at an alarming rate. Mom's been totally disoriented for days now, having no idea where she actually is. She thinks we're at the hotel at Pechanga Casino. Pechanga is her favorite place, and we used to go there a lot before my brain surgery. Since then we've often talked about staying at the hotel there, but we never actually did it; I kept telling her that maybe the next time my husband's here we could all go. Now, even though she's never actually stayed at that hotel, that's where she thinks we are. She's gotten belligerent after telling me to "call someone [meaning the front desk] to come up here and help us get me into my wheelchair" so we can "go downstairs and play the slot machines!" I've tried coming up with all sorts of excuses, but then she demands the phone so she can call the desk herself...and I think up more excuses for that not to happen.
The social worker from hospice came yesterday and spent a good deal of time here. Mom asked her "how much longer will we be here?", and since I had already clued her in the social worker said "as long as you want!"
Right now I've had a great, unexpected excuse that's gone on all day--there's a massive manhunt here in SoCal for an ex-LAPD, ex-military man who's shot and/or killed several people today and Sunday. Because the local channels have had coverage going all day, I have it on in Mom's room and when she says she wants to go downstairs to play slot machines, I tell her, "look, Mom, they're still searching for that fugitive--look at the schools that are on lockdown, and the military base that's on lockdown...they're saying if you're in a safe place you should STAY WHERE YOU ARE!"
She's so confused... Our cats wander in and out of her room as always, but she doesn't understand how they got 100 miles away to the casino's hotel. She asked me last night how many carriers we have...because she's thinking about how we're going to get them all home from Temecula.
The last time I dealt with anything similar to this was when I used to volunteer at an HIV/AIDS clinic, and I'd do respite care on the weekends for end-stage AIDS patients to let their caregivers have a break. I did that for a friend who was days away from dying, and he had NO short-term memory at all. That was different from this, but similar as far as how it makes me feel talking to Mom. I'm just playing along as best I can.
It looks like the doctors, nurses, and hospice coordinator were all wrong and Mom is NOT going to snap back to her pre-hospitalization lucidity. I keep telling everybody (the nurses, the social worker, etc.) that it was LITERALLY as if someone flipped a switch that night Mom choked. Up until that moment she was perfectly, 100% present and coherent. But from the moment I saw her in the ER she was confused and saying weird things. I'm grateful for her sake, and mine, that up until last week she was 100% in control of her faculties. I know that many people have the added burden of caring for a relative with Alzheimer's or some other form of dementia.
All thoughts and best to you and your family, MoodyBlues.
I'm sorry to hear about this turn of events. Maybe when she choked, the lack of oxygen affected her brain? Regardless, my thoughts are with you. These things are incredibly hard to deal with. Also, I know it's easier said than done, but don't forget to take care of yourself during this difficult time.
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