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The other day, after posting a "rant", I realized that I need a place to write down what is going on. So I'm going to start here. I'm not asking for advice, but all is welcome, without push back.


My mom is 91. She's had a good long life. Had a stroke in June 2013. Was in acute rehab for 2 weeks, then sub acute for 4 more weeks. She developed vascular dementia, i.e., she knows us all, knows the day, date, etc, but thinks that there is a union trying to take over the facility she's in, that there are floods all the time and that the Communists are about to take over (she watches a lot of Fox News.....). We tried her in a lovely AL facility, but she was paranoid and couldn't remember to push the button when she needed help; she fell and we moved her to memory care. She didn't do well there and we added a full time aide. She fell THERE (with two aides in the room!) and ended up with a broken hip. Anyway, post surgery for that (September 2013) we admitted her to a lovely NH. She's done really well there, gained weight, become very mobile with a walker. Great therapists (PT is a sadist, but I think they all are, she's pushed my mom to do stuff none of us would have expected!). Mom was in the hospital for pneumonia in Januray, recovered well and was back up and walking in a few weeks. Fell in June; discovered in hospital that her heart rate was quite low; we ended up doing a pacemaker. Back on her feet in a few weeks. Mom started feeling out of breath in NH a week or so after pacemaker placement. NH dxed pneumonia. Several rounds of antibiotics; chest xrays, etc. We made an appointment to see a pulmonologist, because mom has had pleural effusions in the past. Before appointment happened, she fell in NH, ER via ambulance; blood tests were all out of whack. Long story short, they tapped her chest and the little pocket of bacteria in the bottom of her lung blossomed and sent her into sepsis. She made it through that, is back in NH, after 5 days of being bedbound. No fractures, but she's still in pain. On tramadol. Talked to her this afternoon after second PT session. She said "I'm not in pain, but my legs don't work". Okay, NOT in pain is huge. At least they've got pain meds on a schedule and not PRN, because if you ask her if she's in pain, she says "no". But then she is if she moves.


My POA brother is in Europe for ten days; younger brother is supposed to get back from vacation this evening. Hey, I'm not a hands on caregiver by any stretch, but I'm trying to take care of my mom the best I can. Trying to figure out the next steps. She's got CHF, doesn't seem to be progressing anywhere! Dementia is not of the 'mean" kind, she's just confused about the facts most of the time (asked me the other day if youngest brother had 3 or 4 kids, she was concerned that she couldn't recall 4th kid). NH says not time for Hospice. Hospital says that we are not at palliative care point yet.


Frankly, if this were one of my dogs or cats, I would have put them out of their misery this week. There. I really needed to say that. I don't think that there is any redemption in physical suffering

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ba8al,
at mealtime in ednas NH they drag everyone into the lunchroom . some never lift their heads off the table . i think they drag them in three x a day just to keep them from lying in bed and wasting away . i saw an old gal yesterday who by all observation was already dead, frail -ly reach out to see what was in her dinner plate . most of them seem to be flying on narcotics and tho we dont see any QOL they still seem to hang onto any little enjoyment they can find . my aunt obtained shoe pads that made her shoes stay snugly on her feet and youd think she was rich . she has 20 bucks hidden that nobody knows about and it makes her feel powerful and secure . dont underestimate them . they may be trippin on pain meds and having a pretty good time inside their heads . my mother didnt die until she was at peace with her review of her life and was ready to accept that it was the end of her time . if your mom can and wants to talk , just listen to her .
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Captain you are such a wise man!

Ba8alou I don't have words of wisdom for you, just a big virtual hug. This caregiving can be such a roller coaster ride of emotions with the physical and mental ups and downs of our loved ones. It's enough to wear anyone down and out.

As for your mom's prognosis, the nurse told me my dad was doing OK when they started him on oxygen (told me not to come) and 45 minutes later he was gone...so doctors and nurses don't always know the ways of our bodies. I hope your mom and your family has peace and a continuation of a lack of pain (even when she moves). Hugs.
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I wish my mom were tripping on pain meds! Had a two day battle getting them to put her on scheduled rather than prn meds. This is "good nh" where they don't overmedicate. Sigh
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Thanks to you both! And all ! My dad died in 1997 of leukemia; I'm not sure why this is so much harder. Maybe I was more distracted by my younger children or the fact that my mom was doing the caregiving and controlled the flow of information. I just feel quite ineffective and at sea. I'm just in need of venting and posting. If anyone is listening, that's fine. And if not, that's fine, too.
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We're listening...and we know what you're going through. It IS tough for anyone. Since none of us control the universe, you just have to go with the flow. Do the best you can and know that it is enough.
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I read your previous rant about discontinuing any further treatment for your Mom.
of course this is the begining of the end. Each new day bring us all closer to death.
As far as the pain is concerned she is living in the moment and when she is comfortably in bed she probably has no pain but when she moves the moment changes. Good reasons to keep her on a regular pain management plan.
Too soon to send for Dr Korvorkian. She is a fighter she has proved that many times. As long as she wants to continue to eat and I don't mean forceably spoon feeding her and is interacting with you and others and able to be pain free and continue a little PT she is making the decision to continue to fight. She is in a good place and recieving excellent care so the decision for hospice at this point is moot. Hospice can provide a lot of support and guidence and I would definitely recommend it if you were caring for her at home. The major decisions you will need to make will be whether to treat any further infections and you already know you wont authorize any further invasive treatment. the pacemaker was a good decision and has contributed to her comfort for as long as she lives.
There is currently a lot of dicussion about fractured hips. Many say the fracture occers first and that causes the patient to fall. No one really knows but she beat the odds on that one. Would you want her to lie in bed waiting to die with an untreated fracture and finally sucumb to the inevitable pneumonia. Each case is different and the personality of the patient is very important. To hospice or not to hospice that is the question. It really does not matter as she is getting all the care she needs right now. So relax and enjoy whatever time she has left. We can decide for our pets and of course should but with our loved ones we do not have the right to make that decision even where it is legal. That is the loved one's decision. When they can't make the decision and we have to decide to turn off life support we should do it with love and not be rushed and follow your loved ones wishes
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Veronica, such wisdom contained in your post. Thank you so much for talking to me. Thank you for being my friend here.
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at NH dinner , one old fellow reached out to get his polish sausage and came back to his mouth with an oversized , padded spoon handle and proceded to try to eat it . an aid pointed it out to another aid and they both had a hearty chuckle . edna was cracking up herself at the sight but turned to me and said those aids shouldnt be laughing at the old guy .
in the worst situation i still think some harmless humor can be found.
the NH dining room looks like the aftermath of a foodfight when the meal is over .
the same old guy a night earlier picked up a bowl of soup to drink it and immediately dumped it right over the side of his chair . it might not have been an accident , that was the worst soup ive ever eaten .
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I must not understand what palliative care is....? The NH doesn't think "it's time yet"? I don't get that. Mom is on palliative care . . . no looking for problems, but treating what she has. If she's uncomfortable, I would let them do tests; outside of that? Her "test" days are over. What am I missing that a HOSPITAL would say that a 91-year-old woman who can barely get around isn't yet ready for palliative care?
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maggie,
i think docs are reading bloodwork . they can tell from bloodwork how well each organ is functioning .
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When my mom was dying, I was just so glad that my siblings flew over and took over with mom. I just couldn't handle death. The contradictions of my feelings on her dying and the helplessness that we should be doing something to help her live longer. But the worst part was the helplessness. I came on here to AC to get comfort and strength. So, don't hesitate if you feel you need to express yourself. We've been through it and understand where you're coming from. {{{HUGS}}}
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it is indeed a very nervy time . you have to come to terms with yourself that death is imminent , then disconnect from your own emotions and walk beside the dying person until the end . they need an anchor , they dont need us overreacting , flipping out or breaking down ..
my mother upon realizing she was shutting down , asked me " how am i going to get out of this one ? "
i told her none of us are going to get out of " it " .
factual , compassionate, a little grim, a lot of love and empathy flowing between us .. very little emotional exchange . business like ..
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Right you are, Captain. It's our strength that gives them theirs...
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Just sending a hug to you. This is hard. You are doing well.
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I don't think NH is the appropriate decision-maker regarding hospice. Call hospice yourself for an evaluation.
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good idea jeanne. might be a little conflict of interest there .
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When we were deciding about hospice for our mother, we wanted to have NH staff in the meeting. They declined. They said the decision was always the family's to make and they never wanted to influence it.
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Once Hospice comes in to take care of a patient the N/H looses some of it's funding for that patient from Medicare/Medicaid. In our hospice it was merely a support and supervisory role as the staff still did the day to day care and often refused to have hospice aids care for the patients, ie go in to bathe and spend an exclusive hour with the patient. Some N/H refuse to allow hospice care which they can do. there has to be a contract in existence between the hospice and NH which is something to consider when choosing a NH. They will do their own version of palliative and end of life care

Capt I wish we could say the drs are applying (proper) attention to tests and making informed decisions. I was recently diagnosed with COPD and Asthma. never had a symptom of either so did not want to use the steroid inhaler that was prescribed twice daily. This was on the basis of a CT scan and seperate breathing tests. I then spent hours on the computer and finally discovered that one of my meds (Sotolol which is essential to control my Afib which I really do have.) causes constriction of the tiny air spaces in the lungs hence the test results the drs made their diagnosis on.
Sorry i went off subject but wanted to respond to some of the comments.
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ba8alou, you are writing for many of us as we watch our parents live out their last years. Things happen one by one, and the only thing we can do is help make it easier. I don't have any words to help, but I am reading your thread with you. Thank you for posting it.
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Thanks again to you all! Such wisdom and comfort here! Veronica, thanks for the thumbs up on the pacemaker...I was initially against it but we left it in mom's hands and she wanted it. Saw mom today, she's not remembering that she can ask for more pain meds so I wrote that down on an index card. Also, she's convinced "something" is wrong...nothing except 5 days in bed and being 91. Thanks again. I'm going "vamp until ready" as we say in music and figure out the bigger questions after my brother cones back and we see pulmonologist for followup appointment. Normally I wouldn't do an outside followup, but this will enable us to get an office appointment for a small chest tap if one is needed.
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Mom is getting the best of care in the best of hands. Good time for some visits that might be overdue. These might be last days or it might be a little while. Your comment about dogs and cats intrigued me - we did bascially "cat hospice" for a couple of ours because they were such people cats and though ill seemed to still get something out of life, even if it was just the pleasure of beeing fussed over and licking up the tuna juice from a saucer even if they could not really eat the solid food...but a couple were really ill and hurting and we did take them to the vet. I say let the person tell you what their quality of life is like - for most of us, just being alive is worth quite a bit of inconvenience and even some discomforts - and get medication and any other interventions enough to be as comfortable as they want.

It is a hard situation when it comes and you see it coming, but you are making the best that can be made out of it and will have good things to remember when it is all over.
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Just read the posts on here..My mom is getting hospice care..It has been about 3 and a half months..I am taking care of her at home..My boyfriebd bought a new house in another state from where we lived..After a couple of weeks my mom came to live with us..At the tie she was doing pretty good..But when she moved in with us it all changed..She started not sleeping at night and taking all her clothes off all the time..It was awful..The hospice nurse ended up admitting her to the in patient facility to try to get he meds adjusted and to give me time to rest..She did start to do better..Than she got out of bed one night and she fell and broke her hip..another trip to the hospice facility for 2 weeks..So many ime they told us they didn't think she was going to last more than a couple of days..she is now home..has been for a couple of weeks..bug bed ridden..I am the only caregiver and i
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Sorry wasn't done with my post whem I accidentally sent it..I am the only care giver and I have to say it is very trying and tiring..I have to be alert 24/7 because she doesn't sleep well even with meds..I am now looking for a nh for her and feel terrible about it..But I just can't do it..She has problems with her bowels getting impacted and I can't do what the nurses do for that..So she suffers until they can get here..At times she is demanding..Last night I went in her room and said mom do you need anything I'm going to take a shower..She said no..I was just getting ready to get in the shower and my boyfriend knowcked on the door and said your mom is yelling for you..(He is not a care giver//But great moral support) So I got dressed again and went to her room..I said what mom..She said can you give e that deck of cards..I said really mom..I just tole you I was going to take a shower..She said I know, I'm sorry..I find myself getting irritable with her and I don' want to..But I get tired..I feel if she is in a nh we will have more quality time together..I'm to tired from taking care of her to really spend much quality time with her..Does or did anyone else have the guilt feelings..I admire all of you..This is tough..I took care of my husband when he had cancer..Two years ago..But his went very fast..seven weeks from the day he was diagnosed he passed away..My mother was diagnosed two months before him and she is 83 years old..It is so hard especially whe she is having a bad day..Thanks all..Take care
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Cindy, get your mom into the NH and don't feel bad. You've done your very best and are to be commended. But you have a life too and it's not going to help your mom if you collapse from fatigue (either mental or physical). Hang in there...this is a marathon, not a sprint.
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My vent for the day: got a scary call at work today (gave mom card that says "please call my daughter" with my cell number and she used it! She was in tears, saying that she was in terrible pain. But she was able to tell me that the pain was in her lower back! Yay!. I ascertained that she HAD asked for more pain meds and had been given them, but was able to tell the nurse where the pain was. The nurse was jumping up and down on the other end of the phone, because now they can do a lidocaine patch on the area where the compressed disc is. So I called just now, mom is happy as a clam, no, no pain, she's not sure if she has a pain patch, but everything is hunky dory right now!
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Thank you Blannie...I just reread my comment...I'm more tired than I thought..with the bad spelling and all...And she doesnt have bed bugs...lol...Don't even know where that came from....all kidding aside this caregiving is tough...Wouldn't wish this on anybody for so many reasons...Take care all and stay strong..I'm so glad I found this sight..I was afraid I was the only person having these feelings.
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Cindy; there will be plenty to do once she's in a nursing home, believe me! It's just that you'll be dealing with a full deck of cards and a good's night sleep. It makes for better problem solving skills! We all feel guilty about something, but try to let it go. Your mom needs three shifts of caregivers right now, not one worn out daughter!
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Wow, your mom actually called you to tell you where she's hurting. That is great because it helps to cut down the pain instead of guessing. Good for her! {HUGS} to you both.
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Thanks! She can't dial a phone anymore, but she can point to the placcard that says "call my daughter"
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(Sigh). I visited Mom today. She's having such difficulties talking and is so frustrated by that. I gave her two good neck massages, wheeled her out to the lobby to show her where they are painting. We got to look out into the garden and saw two cardinals. Back to her room. I try to come for my weekly visit with an hour or so of "material" stories about my grandson, my job, family gossip, books I'm reading. It's exhausting, but I can only imagine how much more terrible it is to be in her shoes right now. I'm just so frustrated and sad.
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