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you are a good daughter :-) and a blessing to your mom
you are making this part of her life as good as it can be!
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Thanks for the pat on the back! I really appreciate it. What terrifies me is that her sister, who was the "delicate" one in the family, lived to be nearly 97. this is just so heartbreaking. For me at least. Hard to gauge her mental state.
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I had to laugh a bit the other day. When I emailed the wonderful news to rest of the family that mom had gotten staff to call me and that she identified pain as being in her back, my sil, who I love, who visits mom several times a week after work, as I cannot (yes, jealous on several levels, am i) asked, why couldn't the staff get that out of her or figure that out? Great question, except that it's taken ME two weeks to get to this point. Just venting, don't need answers, because there are none. I'm just having a pity party tonight. I'll get some sleep and solve some problems in the morning.
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ba8alou, ahhhh a good night sleep... I always felt that if a Caregiver isn't getting the required amount of sleep that something needs to change.

I wonder when a loved one, be it a parents or a spouse, is now in a continuing care facility, if we go through the *are we doing enough for them* phase?
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ba8balou ((((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))
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ba8alou, when you posted here how your mom called you to tell you where her pain was, my very first thoughts were that when she's in pain, she turned to someone she trusted. You. Family bond is strong. Yes, she could have told staff but... they are not you, someone she trusts. Store this memory and treasure it.
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Hi friends..hope all is going well for u all...I guess I just need to vent today..Having a feel bad for me day...I'm just so tired all I wantto do is have a good cry...but dont want my mom to know and my boyfriend. just says I need to toughen up when I cry..a nice hug would even be nice....thats not him either...my sons came for momd bday yesterday..we live 10 hours away so that was nice...but than my mom complains to them about what I dont do...she wanted to know where the list she gave me of things she wanted..she told them I didnt get her stuff...I did get her some but I gave it to her for her bday so she hadnt got them yet..i just forgot her spice candy..I have tried to tell her when I go out I only have an hour or so to do what I have to do..cant leave her long with my boyfriend...I get upset because these people that come in and have the pleasure of being able to pamper her while looking at me like I'm horrible because I only have so much time in my day..they dont get I'm TIRED...No need to respond..I'm just venting...You all have a good day....
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Cindy, the next time visitors give you that look that you're a horrible person, just turn the tables on them. Tell them that you're too busy with other caregiving duties, work, housework, meals, laundry, etc... So, instead of looking at me with judgement, why don't you come visit once a week for 2 hours and help mom with her 'list'. This will greatly free me to do more on hands care with mom. I would greatly appreciate your help! ... And watch them run the opposite direction.... It's one thing to condemn others, but it's totally different if you're expected to help. FYI, it took me years to finally do that - with my siblings.
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Thanks for the advice bookluv...Unfortunately we live in another state than my family and I have no siblings my only sibling passed away..I'm talking about my kids but mainly their spouses...my boyfriend told me about the same thing..but we are looking gor a nursing home and I am going to get grief over it..he said tell them while she was with us she got the best care possible and we were told that by the profesdionals..but it is to much for one person..we are putting her in the best place we can get for the money..We would love to put her in a better place do if you all want to chip in x amount of dollars we will do that
he said watch how fast you see tail lights going out. the driveway..We r doing the best we can thats all we can do...as much as I complained about my boyfriend in my last post ..4 am he came into the living room andvtold me to go to bed and he would listen for mom..but I didnt..I'm use to the couch now..in fact maybe someone can help me...he bought a beautiful home and we moved here in june from a diffferent state.my mom moved with us a coupke weeks later she went downhill immediately..so all our plans changed..we planned on splitting our time between states and he could hunt where we camefrom..not fair his life has changed so much..I'm thinking about getting an apartment and moving mom and me out of his house so he can get on with his life...we really haven't even had a chance to enjoy the home..but I feel he needs to have his freedom to move on...He will soon be 65 he shouldn't have these burdens on him..He hardly knew my mom when she moved here..I don't know if I'm thinking rationally or not..we r looking for a nursing home but that vould be awhile..take care all....
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Cindy; As I've said in the past, my mom would have been dead three times over were she not in NH! If she were at my home, she'd be bored, anxious, afraid she was being a burden, and she'd have pneumonia and I wouldn't know it! Let me tell you a story. My grandma lived with us when we were young. she was in relatively good health except for having a broken hip and poor cirucluaiton. Mom was home with my younger brother, grandma would occasionally go to my aunt's so my mom could catch her breath, change of scene for grandma too. She did NOT have dementia. All worked out except that grandma was ALWAYS cold and my dad would blow up because the AC wouldn't be on in the summer when we got home. So, younger brother brings home the flu from school. Grandma catches it. Mom does not initially realize that grandma is sick because Grandma doesn't complain, no one is doing regular blood work or listening to her chest with a stethescope. Grandma goes to hospital and dies a fairly horrible death from gangrene (because aunt is the one taking care of gram's feet, not a podiatrist every 6 weeks like in NH). Anyway, that's my story of why my mother, post stroke, post hip surgery, post CHF, with vascular dementia is in a NH getting professional care. Dementia especially, is not to be dealt with by amateurs.
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Thank everyone for your comments. Is Dr. Kavorkian still available. My mom is having a bad day today. I jokingly said maybe it's time to kick the bucket. She said she couldn't find it. Still has her sense of humor at 95. I so needed some mental help today and am getting it here.
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I took my mom to the pulmonologist today for followup from her recent hospitalization. I say "took" loosely because there was an ambulet and an aide involved. I showed up and asked questions. Very nice doc, treated my mom like she was actually in the room. At one point he suggested that we could go to the "walk in" x-ray place across the street for a quick chest film. A let a beat go by and said "I guess the ambulet could come back and we could take her over there and we could wait..." he agreed that the nh could do the x-ray this afternoon. I'm learning my lessons slowly from my sil, who always asks why things need to be done the way that's being suggested in the past, I would have broken my back wheeling mom across the highway. No more. Self preservation is my new mantra. Mom's pleural effusion, although moderately large, seems stable, and now that we have a relationship with this pulmonologist, we can get her into the office for an outpatient tap if she starts to fill up again.
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captain: you are right on. 91 years old, quality of life is what needs to be weighed...keep them happy and comfortable.
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Ba8alou I hear you on asking why things need to be done. I'm still kicking myself that my mom's heart doc (who I Iove) talked me into having an ultrasound of her heart. We know it's bad (atrial fib and narrowed coronary arteries). She's 94 and doing unbelievably well according to her doc's expectations. I don't think he learned anything new and it was a lot of work and effort to go through the process, not to count the $$. I should have said no. Sigh. Live and learn.
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Blannie, and everyone, last year when mom broke her hip, surgeon wanted her to come in to have stitches removed. I'm basically a good girl, I do what I'm told. My brother said, wtf, anyone can take out stitches! So whenever any doc asks for a followup visit these days, I ask what the upside is. Because transporting mom in an ambulet presents lots of opportunities for broken bones.
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Blannie, I'm still kicking myself for the pacemaker, but mom wanted it.
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So, I'm keeping this more as a log of my own emotions and thoughts than for anyone else. Mom had an xray which finally got sent to the pulmo doc (emails, phone calls, yes it was done, no it wasn't; drove me mad). So, no change in her pleural effusion. It's moderate. Mom has O2 ordered at night, but she is using it pretty much 24/7 these days, which upsets my SIL, because she thinks it means that mom is ACTUALLY out of breath or O2 sat is bad. Which it's not. Her sat is still close to 100% on room air. I think that mom can feel the pressure in her chest. It's fine that she uses the 02. Talked to the pulmo guy today. He said to have the NH watch for shortness of breath at rest, which would signal worsening of the effusion, meaning another thorocentisis. I asked him if we were in Hospice territory yet. He said, no, but another trip to the ER and hospitalization would probably cause a steep decline. So I've set up the next care meeting with SW, etc and she's kindly offered to have their preferred Hospice provider nurse at the meeting. I feel like I'm just trying to prep for the inevitable here. But in the same way that I wanted to pick a pediatrician BEFORE I had my first child, I want to meet the Hospice provider before they have my mom in their hands. I don't want to have to decide midjourney that I'm unhappy. Thanks for listening.
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Excellent move on your part to have the RN at the meeting. Try to get some feedback on that agency, they are not all the same. We are lucky that Hospice Buffalo has some genuine angels among their staff. ((((hugs))))).
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ba8alou you are wise to meet with the hospice nurse before an event makes the decision inevitable. It is very important to choose your hospice very carefully if you are in an area where there is a choice. because the NH has their choice does not mean you have to use them. If you can, choose a not for profit hospice.
Just lost half my post which is very infuriating.
Meet will all the available hospices in your area before the care meeting to decide if the NH choice is the right one for you. She sounds as though she is appropriate for hospice care but you don't have to have them if you are happy with the care she is recieving. You can also change hospices or simply discharge Mom if you don't feel they are helping. You are free to come and go it is not a final choice. As far as continuing to tap the pleural effusions, if it distresses mom don't do it as long as she is not really breathless. often the same effect can be achieved with diuretics. As time goes on even if you tap she will retain fluid again, it is the nature of the disease. At that poinst she will be nearing the end and can be given liquid morphine which will mask the symptoms so she feels comfortable. Your SIL is right to question every recommendation. The question to ask is "What will happen if we don't do this and can we do it later if we change our minds?" The goal here is for Mom to be comfortable and not be stressed with unessesary tests. Just try and make any decisions during office hours so that the right personel are readily available. You don't have to have hospice at all. the NH is taking good care and you have the right to veto everything. If she was living at home I would definitely recommend signing up immediately because they do have a lot to offer. blessings to you all and guidence in making the best decision for Mom
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Blannie and Pam, thanks so much for your wise counsel. I think at this point we are in the exploration stage, but if I were on my own in this, I would be bleating for Hospice. My mom has differing levels of being for everyone. I've seen her brighten up for the aides, so that I wasn't really sure I was seeing the same person I was with minutes before. I think she's miserable but afraid to die. I don't want to force anything on her, but in this journey, every time we come up against a hard place, I've been able to have a hard conversation with her. "mom, I won't lie to you. the doctors say you're not dying I'll tell you when that's going to happen". So I guess at some point, I'll have to make my peace with telling her if we go to hospice. Ultimately, I think she''lll be fine. I so value all of you, more than you can know. Barbara
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I had a bit of insight that I want to share. I worked myself into a lather the other day about something at the NH (did she had the chest xray, when did it happen, did the doctor get the film and not just the report) until I was on the verge of collapse. I took the weekend off last week from visiting Mom (it's a long drive, three hours round trip, takes mucho out of me).

I realized that getting bogged down in the details of her care is what psychologists call "displacement". You're upset about something, but you focus your concern onto something else to avoid looking at the thing that is ACTUALLY upsetting you. In my case, I'm upset that my mom has dementia, worsening CHF, has had pnuemonia almost constantly since January and is clearly getting frailer by the day. Is she activly dying? It's hard to tell. Her pulmonolgist said to me the other day (when I asked if we were at the point that we should call in Hospice) that he thought that we had one more emergency trip to the Hospital left and then we would see a really rapid decline. It was good of him to give a solid opnion, whether or not it was wrong. Since I've realized that I'm displacing all my angst onto the NH, I'm feeling much less angst-y. Just wanted to share.
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NH called early this AM to say that mom's lung has collapsed; they are treating her with antibiotics. She also has the beginning of a small bedsore on her backside. I have a call into her pulmonologist to find out if there is more we should be doing; or if we should be calling hospice. We have a care planning meeting 10/10 at which the Hospice representative is supposed to attend.
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Hugs ba8alou - this may be the one more trip. Your assessment of and concern for her condition has been right on. I know it must be an agonizing journey for you and for her. Hope the meeting goes well. Meanwhile know that you are doing the right things. I hope it gives you a little comfort. My prayers are with you and your mum.
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Oh cripes.

You're doing everything right, I've nothing to add except a hug, and all good wishes for her comfort. Keep in touch xxx
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thanks, CM and Emjo. I just want to scream "bring on the morphine already". Frustrating to say the least.
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Is she in distress? If so, I hope they do bring it on. It would bring her some ease, which is all you can hope for a this point. Let us know what the pulmonologist says. Hopefully the meeting on Friday will be helpful. Waiting for the inevitable is hard. Deep breaths - take a walk... hugs
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Don't wait for the meeting get Hospice in today or tomorrow. There is no reason the NH Dr can't order the morphine. They don't like doing it but tough sh*t she needs it.
Is she on oxygen. Personally and I emphasize personally as a retired hospice RN I would stop the antibiotics and any other meds that are not designed for pain relief anti anxiety. she can eat and drink whatever she wants or nothing. The anibiotics will just upset her stomach. If she gets restless make sure they check her bladder.
it's OK to put a catheter in at this stage unless she is distressed by that. Saves a lot of moving and changing. She could have at tube put in her chest which would allow the lung to re-expand but she sounds as though she is too close to passing for that. if the NH is unreliabel make sure you are there asking questions and she is getting enough medication. This is very hard and thoughts, prayers and hugs are comming your way.
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Thanks to you all for your answers and encouragement. According to NH she's not in distress. In bed and comfy, am awaiting report from my brother and sil who visit almost daily. Still haven't heard from pulmo, I'm assuming that he's talked to nh. When nh wants to transport her to hospital, they call brother who is financial poa (also he's a guy and 6'3".😃) Brother is still waffling about Hospice; I feel like I'm in Wonderland. We all know she's dying, but denial is a powerful and comforting defense. And then there is Youngest brother who lives 5 hours away and never answers emails. Except when he does and says " I have the utmost faith in what you guys are doing". We're pretty functional, , all things considered
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I am not sure about the displacement. After taking care of my parents for the last 5 years - they have become so dependent on me that they expect me to fix every issue. When the details don't get handled - there is no one else to fix it.
I rely on the assisted living staff and doctors, labs and hospitals to keep up their end. When they don't, it takes hours of follow-up to make sure that things get done. It is a lot of responsibility and pretty much a full time and thankless job.
I get on rants too - because I am exhausted being the go to person for all of it.
Then the guilt sets in after the rant - since they really can't take care of themselves. I think they both will outlive me - this is one tough generation.
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Just had a really good talk with youngest (aka disinvolved) brother. He gets what's going on. His eldest is having problems. Never assume that your siblings are uninvolved because they hate you!
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