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Sharyn,
good thoughts for your brother's recovery - he's a brave man
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Thank you MsMadge.
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Still no stucco. Transferred my proceeds for closing. Didn't want the market to fall anymore.

Sharyn, how is bro doing?
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Glad, it’s been a rough day. My sil said he is unresponsive. My nephew says he is sedated not unresponsive. I was very worried until my nephew clarified things. They did CAT scan, eeg, and MRI all are negative. He was having slight seizures yesterday (possibly from the anti rejection drugs). It will take several days to bring him out of sedation so he won’t panic. Yesterday it took 4 people to hold him down so he couldn’t pull out the ventilation tube and IV. It appears positive and we just have to get through this part of waking him up.

My sil is not sleeping or eating. She won’t leave the hospital. It’s understandable she is negative about the progress at this time. I hope she can rest, not collapse at some point.
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Ahh, Sharyn, of course she is worried and not sleeping much. Just know my thoughts are with you and yours. Keep us posted.
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Thank you Glad. I am worried for my sil. My nephew just texted. The neurologist was able to get my brother to respond to a couple commands so he is starting to come around.
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Just some info on what caused my brother’s lung disease. It was determined it is a virus. Idiopathic....no know name for the virus. It starts as a spot on the lungs and grows. The damaged tissue becomes like cement. In my brother’s case, the spot started at the bottom of the lungs and spread upward. The virus is only in the lungs and not the entire body which is why a transplant can be done.
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Becky, check with your doc on the upcoming trip to CS. Remind doc that altitude in Springs area is 6,500 to 7,000 feet. Less oxygen and what if there is a trip to top of Pikes Peak is planned? Altitude over 14,000 feet much less oxygen. Heart and lungs will have to work much harder. CS is a beautiful place to visit and is way, way up there.
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Thanks Glad. I’ve been To Denver. We didn’t sign up for the Pike’s Peak side trip. I knew I couldn’t do that. The only outside activity I am doing is a very short boat cruise. I’m taking a cooking class. Mostly, I plan on enjoying the scenery and relaxing.
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glad - that was awful not hearing from the twisteds for that time. Hope the stucco gets done soon. It will look great!!!!

sharyn - such a roller coaster ride with your bro. It is a very complex procedure - not just the surgery, but the recovery phases. Your sil is going through a very difficult time. Prayers for your bro to get through this phase successful and for rest and peace for family. You must be relieved he is responding.

Becky -so glad you are going to CS. Have a wonderful time!

(((((((Beth))))) what a terrible situation! Let us know how you are.

duck - glad you are moving on getting POA/better support for your mother. She will need more and more as the disease progresses. And so glad you are going to therapy and getting medical help. Good luck with the bugs. I have to tackle new ant hills in the lawn here.

stacey - so good to hear from you!!! I just got rid of my Foreman grill. Haven't used it. I have a few cans of Comet that I don't use any more so they need to go and so on. I was shocked at how much cleaning material I have - don't need that much variety, T am not surprised that you still are dealing with the fall out from looking after fil. These experiences change us forever, Yes, all those things are connected. I have changed my diet to promote better gut health (no meats for now and lots of veggies. fruit, nuts, legumes and some grains/seeds) and that has helped my CFS/FM sx. The BC smoke has been bad here too and worse around E'ton. Take care of you, stace

((((((hugs))))) to everyone.
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Finally got a call from the NH doctor yesterday. I must say he is a very pleasant man. I had looked up his ratings on line and they were very high. However, we discussed mother's situation, and low and behold, he did not know what drugs she came in with, nor that she had BPD, nor about the decision at Christmas to take her off risperdal, monitor her and put her back on if she needed it!!! I thought that the point of keeping records was to read them to be informed about your patient and refer to them to make the best decisions. Without doubt the best decision would have been to put mother back on the risperdal when she started feeling bad. Now, despite my continual feedback to put her back on risperdal, she has been through an increased dose of her original antid, which did not help, a second antid which did not help, and had some side effects, and now a third antid which may be helping. He wants to keep her on this till mid September and asked if I would be down to see how she was. I said the nurses, in my experience, were doing a good job of seeing how she was. They were with her daily, which I could not be, and who knows even about September due to the CFS/FM. I chatted with him about her behaviour and he said thought he saw signs that she was happier on this new antid. Sigh!!! Hopefully it will work and if not I think he will put her back on the original meds regime. I gave him some background as to why that choice of drugs and why they were working. Risperdal is sometimes used in combo with an antid to treat BPD. If he had called me back the first time they left him a note to call me, mother might not have had to gone through this period. Can you tell I am annoyed????

I have now officially joined the whine about NH's club

Slowly getting my gut sorted out. It is going to take a while, but I believe I am going in the right direction with my veggie/fruit etc diet. I ordered a kindle book on the subject to keep me on track, and I have to reduce stress as much as possible.

Meanwhile my thyroid is a little high, (so reducing stress is harder) which accounts for the energy spurts, but I am not sleeping well which is no good, so I will drink coffee with my thyroid pill which decreases absorption and should get my T4 back to a better level and I should be able to sleep more.

That's the plan anyway! All part of looking after me so I can do the things I have to.

Thinking of all of you, even the ones who don't post much anymore. Let us know how you are if you can.

dori - thinking of you and your mum especially at this time. ((((((hugs))))))
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Just realised I am going to have to connect with the Director of Care more to be sure that mother is monitored properly as regards her mood. There was a position between the nurses/aides and the DOC, but that has been abolished. I would hope the DOC liaises between the nurses/aides/reports/family and the doctor, so he gets a picture of how mother is beyond the questions he asks her. Also I will check with the nurses/aides myself to get their first hand impressions of mother and reflect my findings to the doctor, if he will return my calls. Sometimes you have to know the right questions to ask. Sigh!!!
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Golden, I'm sorry you are going through this. It sounds really frustrating. It does sound like they need a liaison between the DOC and the nurses. I'm glad you are doing what you need to though to take care of you. Hopefully the DOC can help you make sure she is monitored properly.
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Thanks frazz. It was so unnecessary. All they had to do in May was put her back on the risperdal as they said they would, and she would have been fine again. Ultimately it was and is the doctor's decision. My job now is to make sure he has the proper information. My dd said she didn't mind making phone calls. I keep her updated in case I get hit by a bus or something. But she easily says she will do things, then when the time comes they may or may not get done. I had a tough winter with CFS/FM or I might have been on them harder. All we can do is the best we can.
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I'm still having a frustrating time of it with mom and all that her needs entail. We did a phone call on speaker between her and sis last Friday, and it really surprised me that she confronted sis on some of the stuff that she's done. Sis of course didn't really say much, just denied it. We hadn't discussed any of that stuff beforehand, and I haven't even brought up any of it to mom since around the time it was happening and the last court appearance that took place when she was staying here, for fear of just upsetting her when she is trying to get adjusted at her facility. I was fully expecting her to throw me under the bus and play the sympathy card because she's not living with me anymore and she wishes she could move back here. Anyway, sis hung up, and mom wanted to call her back and I said maybe another time when things are a little calmer.

Ever since then, she has been wanting to call sis back, but we haven't yet. I don't think it's a good idea right now with the court mess still ongoing. I'm waiting for further input on the phone call/visit issue from mom's attorney.

On another note, went to see mom earlier and brought her pen needles for her insulin pens and some pajamas that I found of hers, but forgot the bottled water and paper towels she asked me to bring. Not a big deal, she still has some and I will see her again on Monday morning for an eye appt.

Well, she harped on that, and then asked if I had been able to find her another plastic mug since one of hers broke. I said that I hadn't, it just slipped my mind, have been busy with other things. I suggested that since the facility has a bus that goes on Tuesdays to Walmart, maybe she could start doing that. She said no, that she didn't want to do that because she has to wait an hour for the bus when they go, I guess to give everyone time to get what they need. I said, and yes, I was a little irritated, "What's the difference in you waiting an hour and me having to take an hour out of my day to go do it?" She said, "Do you not love me anymore?" Because I asked her to get her own stuff at WALMART!

I listed out the things I do, doctor's appts, store runs, paying bills, managing all her financial stuff (taxes, insurance), pharmacy runs, etc etc and said, "If I didn't love you, I wouldn't do any of this." I know, it just all went in one ear and out the other, but I swear she doesn't appreciate anything. It's always more, more, more. I finally just said I needed to go because I could feel my blood pressure rising and didn't want to yell, so I cut the visit short. Told her I'll be back on Monday.

Ugh, but I feel bad too for being grouchy and irritable. I just have days where I get so fed up with feeling like a servant to someone who is "all about me" and feeling stressed out because of it.
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Checked into electric and plumbing permits for my house. They are issued by the state as in this rural area specialized inspectors are non-existent. Hadn't been able to find the permits, then the building inspector, who is on my staff, found them. One of the commissioners happened to be in my office when this happened. How in the heck is a final electric issued in May and the initial inspection in mid-July. I told the inspector he needs to figure out what the heck, with the commissioner still in my office, happened! Commissioner laughed about what a big deal that could become if misinterpreted by someone. It is kinda funny. I told building inspector that I want no part of this, I do not want in the middle of this, and to figure it out on Monday. Wouldn't you know!

Golden, I think that the non-reading med pros happens often. I would be frustrated too.

Becky, a boat cruise in Colorado?! Where? I know of raft trips, but a cruise?
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Glad -it is a good thing YOU know what you are doing!!!
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Having an error like that could really screw up closing! The bank will know the difference!
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(((((frazz))))) you have some pretty frustrating things too They like playing the :"Nobody loves me" card. Narcs are totally self centered. You can never do enough or do it well enough. They want to be the center of your universe. My sis is a narc too and once after I became POA financial and medical, and had moved mother 3 times in that many years sis said to me "What have you ever done for mother?" I know that had been discussed between them - everything about me always was. You are right your mum doesn't appreciate anything. You just have to set your boundaries and stick to them Sounds like you need less contact. You have been going through a lot.-
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Glad, I have no clue. It was in a brochure we got. It could be a rowboat around a pond. Can’t amount to much in an hour 15 minutes. I’ll let you know.
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Take a listen to humorist Jeanne Robertson on YouTube retell of a little boat ride through the Grand Canyon
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This one?
Jeanne Robertson "Don't go rafting without a Baptist in the boat!"

LOL!
🚢
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Frazzled, your mother needs to take advantage of the shuttle to stores imo. She has the means available to her to get her own things instead of relying on others (YOU), and it will be in line with keeping her as independent as possible for as long as possible -- which is best for her! She should be using the shuttles to get out and do her shopping. What is one hour out of a day when someone isn't working a job? Sorry, I haven't been reading the thread consistently lately, I don't know if she has mobility issues. If she doesn't, I hope you can find the words and the fortitude to push her to start doing her own shopping as much as possible.

In my experience, and as testified to many times over in these threads, nothing good comes of doing "everything" for the elder who can still do for themselves. I'm sure your mom's words will be hard to hear, and I'm sorry that she doesn't see the wisdom in doing for herself, but I do hope you can find a way to push her to do more. It's not JUST about you doing less, though that is helpful and will keep you from being overly resentful, it's about her keeping all of her skills tuned.
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Thanks Golden and Ali. Very good points. I have definitely had to set boundaries with her to avoid going crazy.

Her problems are primarily mental and cognitive, but she has exhibited some Parkinson-like symptoms. When she first came to stay with me, she had a flat facial expression and was basically incoherent or "zoned out" sometimes, and had slowness of movement, and muscle spasms and stiffness.

She did have trouble with some basic tasks. We got her in back in March to see the neurologist, who thought that some of the symptoms may have been caused by the Invega (antipsychotic) med that she was on, and advised us to discontinue the antipsychotics for 6 months to see if symptoms abate. He said that is going to be the only way to distinguish whether it is med-induced or actual Parkinsons, which her father had around her age.

Cogentin was added to the mix and anxiety med dosage increased and she is much more lucid, still struggles with paranoia and anxiety and has some memory issues mentally, but physically I've noticed a big difference. She is able now to perform her ADLs and her gait and the muscle stiffness are better, although now I've noticed this weird dancing like movement in her legs when she is standing still, almost like when you have to pee, and she has kind of a gallop to her step that's hard to describe. Never seen that before. That has developed over the past maybe 4 months or so. We go back to the neuro in a month so I'm hoping he can tell what it is.

She does, however, get around pretty well with no problems. She has gone on outings with the facility and I've taken her to the store, out to eat, etc. She could definitely take the bus. I agree, she needs to stay as mobile as she can to stay as strong and independent as she can.

She, however, would have someone wait on her hand and foot if she could. That's where I have had to draw the line, or else I'd be running up and down all the time. Her insurance will pay for PT which I think would be good for her too, but she refuses.
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Frazz, I’m so sorry you are going through all this. Golden and Ali’s suggestion re boundaries is great and I hope it helps you to set a balance for yourself.

Golden, I sure hope they can get your moms meds balanced for her. It is frustrating talking to a dr who doesn’t know the patients situation. Hopefully next time you talk with him he will be more prepared on your moms situation.

Glad, wow, good thing you know about all these buildings permits, codes and caught this error

drs have figured out that it is my brothers reaction to the meds that causes him to have what they are calling a seizure when they bring him out of sedation. They are working on tweaking the meds so hopefully that will be fixed in the next 24-48 hours.
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House wrapped with tyvek and Styrofoam in prep for stucco and drywall started. By the end of the week the house will almost be liveable.

Went to look at granite and tile oh, I am so confused😕
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My husband, PJ died earlier. Had a massive heart attack.
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Oh Becky, I’m so very sorry about PJ. Many hugs. My thoughts and prayers with you.
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Becky, what, you mean just now, today? I'm so sorry - are you with people, do you have anyone supporting you?
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Becky, I'm so so sorry. My prayers are with you and your family.
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