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Dad's helper,deep breath. Susan has explained perfectly what is going on with dad's lungs and I agree with CM about the Dr, some just have horrible bed side manners. The aim of hospice care is to keep a loved one comfortable and peaceful as they approach the end of life however long that may be. Lack of oxygen is a distressing symptom and smoking of course is contraindicated but hospice will often agree for it to continue as it causes more distress trying to stop it. dad's heart is also bad otherwise he would not have been prescribed warfarin. Stopping it at this stage comes under the heading of one less pill to take and loosing the hassle of haveing blood tests done. 4 litres of oxygen is as high as a single concentrator will go so if he needs more he will have to have a second one which is not a problem, but as you know they are noisy and give off a lot of heat and consume a lot of electricity. Ask the nurse if she detects any fluid accumalation in his lungs and if he needs a diuretic or dose increase, or a different medication.
Hospice is focused on keeping the patient at home and not interveening more than is necessary. Nurses come to hospice for many reasons and from many different backgrounds. people rarely enter nursing because they have a strong disire to care for the dying. This means that although they have the same basic training they have experience in many different area and may be expert in one thing and really understand the disease your loved one has while another nurse may have spent their entire career as an ER nurse. Eventually they will become expert hospice nurses to as long as they can tolerate the high rate of burn out.

Susan mom may indeed nedd her oxygen raised but their could be other reasons for her memory loss so her oxygen saturation level should be tested before simply asking for an incraese in the oxygen. If you have a nurse visiting they should be able to do this for you. Yoou can keep an eye on this yourself if you buy one of the little meters. they cost about $15 in Walmart. A healthy person should be in the mid 90s but someone who has COPD can manage a lot lower than that. Try and keep Mom in a position so that she can breath easily. She needs to sit up straight not lumped over. A pillow behind the back can help at home and in the car. Raise the head of the bed at night or have her sleep in a recliner. Have her do deep breathing exercises too and not sit aound in stuffy rooms
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Susan, thank you so much for your post. My mom has severe COPD and is on oxygen 24/7. Lately she has has some memory loss and even told me her memory is getting bad. I put it off to old age, but I'm going to call her doctor today. It could be she needs her oxygen level raised. Thank you again :)
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Dadshelper, I'm sorry to hear you're having such a rough time.

That comment from the Medical Director… eeeuw. I mean, you don't want doctors to get all jargon-y and technical and pompous on you, but I think actual flippancy is taking it too far. Crap shoot? Nice..! :/

Susan's post should be a real help, yes? Good to hear what to expect from someone who's been there.

I understand your frustration with hospice. Keep talking to them, though, because you are on the same side. It's just that you're taking a more active approach to keeping him comfortable, they're focusing on guiding him in as gently as they can and minimising intervention - you're both right, you just need to find a balance that everybody's happy with.

But whatever anyone does, this is a very hard time for you. Take care of yourself, too (e.g. if you can't stand cigarettes, don't put up with them - and that's coming from a committed smoker!). Big hug.
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DadsHelper....your dad may be experiencing the effects of Anoxia or Hypoxia, which comes with severe COPD or lung cancer. It's a lack of oxygen to the tissues, including the brain, which can cause confusion, memory loss or even some very odd paranoia.

My ex-husband's parents moved in with us years ago when we were still married and his dad was dying of lung cancer and COPD. When his oxygen levels would drop below a certain point (even with a nasal canula or oxygen mask on - they can only do so much when the disease reaches the advanced stage), he would start with the odd paranoia. I was usually the target - not sure why. At various times, I was (according to him): a witch, because I'd put a spell on his wife so that she wouldn't listen to him or do what he said....I had married his son for his money (yeah right!)...I was a prostitute....I was trying to kill him by poisoning his food....I was hiding his wife from him...and more than once, he threatened to shoot me. Once his oxygen levels came back up a bit, and he was feeling better, I was the nicest person in the world, best thing that ever happened to his son, he loved me and knew I was taking good care of them, etc....it was a real roller coaster. I learned to just roll with the punches, so to speak, and play along when it got bad. When he accused me of being a witch and putting a spell on his wife, and told me to take it off, I said I would. I left the room, walked up to my MIL and said, "Hey, Momma...BOOGADABOOGADABOO!!" - she looked at me like I had two heads and asked what in the world I was doing - I told her I was removing the spell so Daddy (my FIL) would be happy again. She just laughed and laughed. I went back and told him I'd done what he asked and he said, "Good. Now we're ok again."

You may want to check with your dad's doctors on this and see if there's something that can be done, although it sounds like you're doing all you can at this point. This may just be something you have to deal with as part of the process.
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So looks as if my Dad is losing some of his memory as yesterday he asked me what did I say I was making for dinner 20 minutes after I asked him how steak sounded. He had a glass on the table and I asked if he wanted it and he said "whats in it?" It was the drink he poured not even half hour before! He talked on phone with my sister and 10 mins later when I asked how things were he answered "with who?". He is on 4L of 02 24/7and lately he has been looking very tired. We recently moved from Arizona to Oregon as the heat in AZ was too much for him so we got moved (that went really well!) and transferred his Hospice care. the Hospice doc here in Oregon told dad he had 6 months and that he could quit taking his warfarin as his health is a "crap shoot" not knowing if the heart will give up first or his lungs. "Crap shoot" were docs exact words and he is the Medical Director of Hospice!! Whatever. Since that I think that's all dad focuses on cuz every Hospice person who comes to check on him he asks them what they think his prognosis is...if it's 6 months then it's 6 months and if not then whoo hoo. Still I don't think it will be long. The Social worker for Hospice told me I should let dad smoke cigs as I should be considerate and let him live how he wants considering his health issues..What?? I live with him 24/7 and see that since I got him off real cigs 3 weeks prior to her visit his coughing and having hard time trying to breathe with all the flem he has lodged in his throat got worse again when he said she told him it was okay! He was smoking an e cig for 3 weeks and he was doing so much better!! So I finally agreed to let him smoke until I saw the changes and took all the smokes away. He is 85 (tomorrow his birthday) and he is dying of copd, end stage copd & I don't think the cigs help one bit!! He didn't have to do nebulizer for a couple weeks nor use his muscinex syrup until he hit the real cigs again. He says he isn't hungry so eats soup or tuna w/crackers but come dinner time after eating a sandwich and snacks inbetween, he scarfs up a full plate of food!! Two months ago he barely ate except for one or two days a week and now he eats a huge meal at least every 3 days! Hospice nurse said hislungs sound like they are carrying air but never mentioned his heart which they say is sluggish and slow. Hospice is okay here in Oregon but the one in Arizona was great. Here they just treat the patient with kindness knowing the end is near and really don't do much. I do more for dad than they do! They never mentioned doing vibratory massages or light pounding (I had preemie twins and I know how to help purge lungs) and have done nothing except check his 02 level w/oxygen on and listen to his heart and check his BP & pulse. I am going crazy between his forgetfulness, his smoking, his lack of drinking water & complaining of muscle weakness and hospice just wasting an hour of our time 2x weekly. Am I wrong to complain about hospice? What exactly is their role for someone in end stage copd? So sorry but it has been a trying day......
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Great.....mom has another UTI. Pee came back positive. K flex to the rescue? I'm thinking she needs Cipro ....I'm not a doctor. I do know she will be talking to the walls and sleeping all day for the next week. Sigh. How do these UTI return. She has a shower every other day for crying out loud. I give up:-/
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Lol, CM, pure evil! Hee hee....
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Truth is an absolute defence to libel, Looloo. There's a long story about that to do with my Narc MIL but I'm too tired…

You see, if you had an evil sense of humour, you might be tempted to encourage her to go ahead and do that. I'm tickled by the idea of DMV bureaucrats getting a bit fat writ dumped on them - can you just picture the kerfuffle in the office? Even better, take her to deliver it in person. Oh come on! - this could be FUN..!
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All day is a whine day.... lack of sleep makes me whiney

Holiday? How in the word can one get a Holiday???? waaaahhhhhhhhhhh

My Holiday is my blow-up pool
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Had a lovely day went for lunch with friend had two glasses of wine and was pretty drunk as i never drink in the afternoon!
My whine......... came home to chaos just chaos she was sitting in the room watching tv telling me she had cleaned the whole house while i was out "having fun" I spent 2hours having lunch with friend then 5 hours waiting for HER perscription!! then home to well looked like burgalry thats the only way to describe it? couldnt find garbage bin? well silly me its at the end of the garden???? oh my god please give me the patience i need to deal with this i didnt clean up i went and had a bath and cried!
Im not getting up tom i dont want to get up until the cleaning lady arrives on friday!! I am going on holidays in 3wks and wonder if ill make it.

Gosh front room with her clothes EVERYWHERE? she was sorting them out AGAIN.

Deep breaths and big brown paper bag OR crystal meth oh how i wish i had just stayed in resto and got very very drunk!
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Cm, I guess she thinks she can sue the DMV. (Roll eyes). And maybe her neurologist for libel? He did claim that she has dementia, after all.
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Who does she want to sue, Looloo? Or is she not that fussy..? :)
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Well, what can I say? The home care/transportation appt. actually went off w/out a hitch. Took less than 10 minutes, my mother was cordial, and we made the first appt. for this Thursday, and then every Tuesday and Thursday going forward. I did have to leave pretty quickly because she was starting up her schpiel (sp?) again about legal action. So I'm feeling mighty grateful at the moment.
Oh--I'll gripe about how I then had to drive 1/2 hour each way to pick up 80 lbs of gravel to redo her front walk area, and then lay it all down myself in 100 degree heat, because I guess her gardeners won't do that. Why wouldn't they do that sort of thing when they work in a community full of frail, elderly people?
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Toomuch I flipped my Mom the bird behind her back! It helps!... But I guess that's not a good idea with kids around!
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Self centered is putting it mildly. That alone is very draining. My father adores the weekday HHA and sees her as his "girlfriend". So Im invisible during the week. Our weekend HHA is a lovely older woman. My father wants nothing to do with her and then wants undivided attention from me. This is why I at least make his breakfast on weekends if not he would spend the entire day trying to get on my nerves because Im not doing anything for him. Anytime I do something for myself he seems to try to "remind" me that Im nothing more than an unpaid house intern. "Did you get the mail I left on the table ?" even if Im in the middle of planning something for one of my children.
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Go to bed mom.. Mom, please go back to bed.... MOM, for the LOVE OF GOD stay in bed!!!!! She wouldn't. It was like she was possessed by tiny mischievous imp's...all night long, and I do mean ALL NIGHT! All her clothes were pulled down, she must have changed clothes 4 times... at one point I found her trying to crawl under the foam mattress topper.... she was just talking away to several people?? Somewhere around 4:00 a.m. I just knew she was gonna pass out from exhaustion so I felt I might be able to close my eyes in peace... wrong. A few hours later I found her inside her closet rummaging for some tool that the "person" asked her to get. What really worries me... her toilet is empty (she doesn't flush) and she goes to the bathroom constantly. I might have a surprise waiting for me when I pick up all her clothes she took down :( I'm so tired... something has to change.
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Yes, I rely on this site for advice, guidance, support, and plenty of exoneration, lol! At this moment, I am counting down the minutes until my appt. w/the home care agency and my mother, to arrange regular transportation/companion care for her, since she's not allowed to drive anymore. As per her personality pre-dementia, she's refusing to accept anything she doesn't personally agree with, she's completely uncooperative, and she won't stop threatening to pursue legal action (Oh, brother...). I can only use my calm voice for so long, and it doesn't do any good. She continues to revv up, and revv up some more. A few days ago, I felt a bit foolish when I literally ran out the door to get away from her, but now I think that's probably a good strategy that I'll continue to use as needed. If any of you are able to shut the door, leave the room, just physically get AWAY when they start making a scene, I say do it.
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Self-centered is right! And it is worse if they were that way somewhat before the dementia. It seems impossible that they are even pleased and docile when cleaning up a bathroom mess - on the floor or on the body! It's attention, for heaven's sake - that's the ticket.

Talking is miss mash without dentures and hearing is the same without hearing aides here! This combination happened this AM. After the second 'what did you say', the reply came out a shout and still incomprehensible.

Being early in the morning, I just turned around and left the room. I did not want our dog to go and hide again during an argument.. LOL

Apparently it was not important. We did not speak during his breakfast - not unusual. All he can talk about is his 'condition' and what we can do about it. There are only so many words to express, 'Not much...'

So, I come here and whine while comforting the dog, etc. We both talk more to our lovable dog than we do to each other these days.

We do whatever works for us in any situation and we are exonerated by all here - right? That's why we come, along with the blessings and good wishes...
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Oh, toomuch4me....I feel your pain and recognize it. It amazes me always how self-centered they become. And you cannot always respond with the 'calm voice' that others think solves everything. It may but it is not always possible with them pushing those buttons all the time. Hang in there girl, you are not alone.
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Toomuch4me deep breaths.....
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Yesterday I literally ran out of the room screaming: I CAN'T TAKE IT ANYMORE !!!" That pretty much sums up how I feel. The entire weekend led up to yesterday's big explosion. On Saturday and Sunday my father insisted on getting up at 7. Now that doesnt bother me at, except for the fact that if I didnt get up also he would come to the basement door and turned on the light (which would have made me even more angry). So instead of enjoying a few moments of quiet that I cherish on weekend mornings, I was fixing breakfast for Dad. Saturday evening Im sitting on the couch with my girls, watching a show. He stands by the TV and needs to discuss why the gardener hadnt shown up. I tried to ignore him but he continued until it turned into a big argument. Sunday he needed to go pick up something after I had already told him I was taking my youngest daughter to a birthday party. Yesterday was the last straw. During my work time Dad insists that he needs me to check his bank account online. He even went on to say his bank account is more important than my job. He starts complaining about an American Express Card that he knew was cancelled. Thats when I exploded. I hate doing that. My sister seems to think that speaking calmly to him will solve everything. YEAH RIGHT. He doesnt listen..has no intention of listening...
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I am LOL!! The last time I took my mom out to dinner, she was sun downing badly..slurring words and mispronouncing others. A man and his daughter were seated in the booth behind us, after there order was taken, the man left and (I assume he went to his car). Soon my mom says, "Look at that man walking on the sidewalk, he doesn't look like he needs to a meal, he looks like he had too many already!!!" I turned around to look.. and sure enough, it was the man who was seated behind us! I am sure his teenage daughter heard my mother...LOL!! With her slurring words, the daughter probably thought my mom was drunk! So Yes, I decided I would not take her out to dinner anymore or for late afternoon appointments. It is not worth the horror of what may pop out of her mouth.
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My whine: My mother got mad at me because we had sweet and sour chicken with RICE! She apparently hates rice now! She complains every time we have something over rice. Then she started complaining about the way my sister speaks to her and if I do she'll slap me?!
I don't know how to respond to that. She can be soo hateful .
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My whine of the day -

I hate the hour drive in Chicago traffic up 94 and across 290 to get to the Jesse Brown VA facility. Every time I make that trip, including today, I just feel worn out by the end of it all.
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Someday.... 2 words. Puppy pads.

Kaz.... I agree, this is getting scary. She's been on a roll all evening....ranting/raving, talking about bashing people's heads in. I don't think I shall sleep well tonight.
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And she doesn't have Alz/dementia according to that psychiatrist. I wish she had used it on him!!!! ;-)
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I can apologise for the fat comments but its the bad language that really shocks me she is always well dressed and well spoken then out comes the "f" word!!
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dad always comments about overweight people in public like today at doctors office. I just wanted to put a bag over my head. Also asked three times in about 20 minutes when "we" are going home. I td him that he is going to his new home in two weeks .
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Gosh assa this is awful, funny thing is mums a big woman? not huge but not slim? My brother phoned earlier and told me to get a sign and put it on her back? On a more serious note though it woke me up to this is really happening and its getting scary i mean apart from the hygiene etc this behaviour really shocks you theres just no logical reasoning here she just cant see how wrong this is. On a lighter note we passed the "local town nut" hes an alcoholic and roams around town shouting etc.... mum turned to me and said "oh dont go near him hes mad" LOL
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Yes someday! I kiss my cat and mum shrieks in horror! she thinks i might catch something off him? hes cleaner than me wormed flea'd you name it BUT if mum asks me if i want a sandwich its a big NO THANKS! my brother when hes home looks at all the food in the fridge and asks if its "safe".
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