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87 year old M-I-L with dementia living in AL. Tests have shown that she has severe hydronephrosis (urine can not drain out due to a blockage or obstruction) of the left kidney. Her right kidney is fine. Ultrasound and XRAYS do not show stones just calcifications. A cat scan has been ordered to try and get a better look.


She is not in any discomfort; other than getting frequent UTIs which are treated with antibiotics. No other symptoms.


We are told by the urologist that she would not be a candidate for shock wave therapy. Depending on what they find surgery under general anesthesia to remove an obstruction may be recommended.


I would really appreciate opinions and shared experiences of those of you that have been through surgery with general anesthesia for a LO.


We are torn as to what would be in her best interests. My fear is that the anesthesia will worsen her dementia and that she will not be able to return to AL but have to go into a nursing home.


Thank you

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All the posts on this site suggest that surgery with anaesthesia is likely to be very disruptive and could worsen dementia. Perhaps the best thing would be to get as much detail as you can about discomfort and deterioration, if you don’t go down the surgery path. Is discomfort likely to occur, when, how bad and would any pain be treatable? Is her health likely to worsen? Again, when and how would it work out? Then perhaps you could give her the options. If she is still in AL, perhaps her dementia is not so bad that she can’t make a sensible choice herself. If she decides that she would prefer to avoid surgery and its risks, it will stop you feeling that you are responsible for whatever goes wrong. Best wishes.
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I would make sure the doctor fully understands and appreciates why you are concerned about general anesthesia. You would be surprised how many seem clueless. I don't think they teach much about dementia in medical school. AND, it's also the aftercare. What would be involved? What kind of incision? Dementia patients are often not able to comply with post surgery precautions like, not lifting, bending, pulling, or yanking out stitches. Depending on her level of progression, it could require around the clock constant monitoring until fully healed and maybe hand restraints. So, I'd ask a lot of questions. It's a tough decision.
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disgustedtoo Mar 3, 2019
After care is definitely a concern. Mom developed cellulitis just before the move to MC, which delayed the move a few days during treatment. My brother had come up for the move, so he was the one cleaning and changing bandages. He reported that just after finishing, she ripped the bandaging off and declared she needed a new one! She wasn't even that bad with dementia at that point (bad enough that she would be better in MC rather than living alone as she could not cook anymore or take care of finances and herself - the fact that she never dealt with the infection OR bothered to tell one of us was telling!)
Anesthesia in the elderly with dementia can be very detrimental, but it can also after elders who did not have dementia (might seem to have it after surgery, just like sometimes UTIs can do and some never return to pre-surgery levels.)
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if you haven’t already, read the book “Being Mortal, Medicine and what matters in the end” by Atul Gawande. I think you’ll find it beneficial. Yes. I have had two people I know of that it affected. I also have several other elders that it did not. The two it affected already had mild dementia but both could have still done fine in ALF for several years.
Good advice on discussing it with the drs in advance.
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Reply to 97yroldmom
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Could your loved one drink more water? That might help with the blockage. My mom never had to deal with this kind of surgery, so I don't have much else to offer in the way of advice. Best of everything to ya.
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Thank you all for your responses and helpful information. She is having a CT on 3/11 so we'll know more after that in terms of what the urologist advises. Her dementia is beyond the point where she can make a decision for herself. She will get very anxious if even asked to make a simple choice between apple or cherry pie for dessert! Great suggestion about drinking more water. If she would do that I'm sure it would help. Getting her to drink is an on-going battle. Sunnygirl, you make a great point about her possibly not being compliant with post surgical instructions. I hadn't even thought of that. We are leaning towards no surgery but I will post again after her CT. This site is such a blessing. I appreciate all of you!
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Judysai422 Mar 3, 2019
As chance would have it, my 94 year old father with long standing prostate cancer has kidney decline. GP wanted to use meds but urologist said could be blockage caused by cancer. Going for CT scan, too, so I will be following along here, also.
Amazing how the two docs approached so differently after watching kidneys decline for months.
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I've read that giving anesthesia through the veins instead of through a mask where they breath it in is supposed to be less harmful.  You might want to research.  Best of luck.
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Sanibel01 Mar 2, 2019
Thank you Jessica! I will look into this!
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There have been recent reports that general anesthesia is more damaging to the system than was previously believed, which makes sense when noting the side effects in older people. Look into this, and ask if there is a way to do it without a general--using a sedative and locals.
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My mom in early stages of Alzheimer's was diagnosed with uterine cancer, had the hysterectomy under general anesthesia, and chemo. This was the beginning of a much more rapid decline.

Hindsight being 20/20 she probably should not have had the surgery. She lived another, long ten years with worsening dementia. Cancer is sometimes very slow progressing in the elderly. Think and carefully consider her options here. Assisted living may very well not be appropriate following the surgery for many different reasons.
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Her doctors will need to fix this sooner rather than later as hydronephrosis will kill the remaining healthy kidney tissue when the urine backs up and is not excreted.

I am not necessarily sure drinking more water will help- this will cause more back up of urine into the kidneys. If she is in the hospital she is probably receiving IV fluids for hydration. This too is excreted by the kidneys.

My guess is her doctors will insert a suprapubic catheter to bypass the blockage if she isn’t a good surgical candidate.
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My husband is 80 years old with vascular dementia. Last year he had surgery for an inguinal hernia, with the same concern about general anesthesia. The surgeon recommended the anesthesiologist do a nerve block instead, which worked well with no issues. You might want to ask her surgeon about this possibility. Best thoughts!
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dementia patients don’t handle anesthesia well. In my Dads case, Nurses called it post op delirium but it lasted much longer than textbook delirium in seniors 5 days vs 48 hrs or less. One option may be conscious sedation if the surgeon oks it - easier to handle vs general anesthesia. We opted for sedation but the surgeon switched due to the severity of Dads leg fractures. Prayers for a speedy recovery
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Surgery itself is a RISK, but so is doing nothing. If she is in assisted living and not a nursing home, chances are you can simply ask her what she wants to do. Decisions must be made with completely understanding of risks and benefits, which I do not believe was explained to you. ASK the urologist of what will happen IF surgery is not done. If the doctor did not explain that, in my opinion you need a new doctor. When it comes to surgery you can always get a second opinion..but I would stay away from a doctor who did not explain risks and benefits completely.

Current guidelines with regards to patients with cognitive decline and anesthesia
published January 2019
https://onlinelibrary.wiley.com/doi/full/10.1111/anae.14530
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My husband had an obstruction with a swollen kidney and the interventional radiologist performed the procedure under sedation not general anesthesia. It was outpatient. They could not remove the obstruction and left a drainage tube leading from the kidney to the outside and this drained the urine into a collection bag. I had to flush the tubing daily. He had the procedure repeated later and they still couldn’t remove it. A swollen and obstructed kidney can cause death so it’s nothing you ignore. I don’t know why they couldn’t do this procedure on her without a general using sedation like what is used with a colonoscopy.
At 96 yo my father had his appendix removed and yes the anesthesia affected him. But what can you do? He was a bit more forgetful and all afterwards. He also had a general when he broke his femur at the age of 97! Lordy!!
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As mentioned, previously, read On Being Mortal by Atul Gawande. 15 years into a dementia journey with my mom, and 4 years of not being able to verbally express herself, I would tell you don't do the surgery. Not just because of the risks of anesthesia, surgery, and inability to follow pre and post-op instructions, but as my mom concluded, most other ways to die would be preferable. Actually she said any other way. 10 years ago, 6 months after we convinced her to seek medical help and she got her diagnosis of probable Alzheimer, she had abdominal pain. I wanted her to pursue testing, but she said she would rather die of cancer. I explained it could be something else that is correctable ( which she reminded me I had said about the dementia symptoms). She refused treatment, the abdominal pain eventually went away. Here we are, she is in a LTC facility, with only several people who visit her, even though I explain to them she is aware most times of their presence. 90% of the time she gives me a smile of recognition, she cheers up when I take her for a walk or if she sees children. It breaks my heart to know she is captured in a body and that the world is often confusing, frustrating, and depressing; but she is still feeling the emotions of her perception of the world. I am now a believer of AND (allow natural death). I now understand what she was saying 10 years ago. I would get palliative care for her, and then hospice when the time comes. Read the book. Also people have said to me most of the time, she doesn't have any clue of her situation. As she always responds to me in some way, as little as just opening her mouth when I touch her lip with spoon, to a kiss, to occasionally getting out appropriate words "your hands are cold".
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if the procedure is done, he may still need to go to a SNF for a least a few days if there is any significant aftercare needed. The nurses in AL don't provide post op follow up. they will give meds etc but they don't do dressing changes or wound care. So check out what the post-procedure needs are.
My FIL is 94 and having cataract surgery tomorrow; he is 20/200 in that eye so it is reasonable to do it. His original intent was to fix his eyes, (the other eye is 20/80) as his current vision level is not sufficient to continue driving although he has been driving since I was not aware of the cataracts or macular degeneration. He and MIL are still in independent living wing but I was able to get a month of medication management since he needs eye drops 3 times a day and I don't trust him to remember. But if he had a condition that needed more post op care, like dressing changes, he would have had to go to SNF at least for a while
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DrewMass Mar 3, 2019
My sister with AD had double cataract surgery in June of 2017 at N. CA Kaiser WITHOUT having to put drops at all. Her ophthalmologist used a time released antibiotic. Of course she also did not have general anaesthesia. I suggest you find an ophthalmologist in your area who does this.
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I agree with Sunnygirl. I am a nurse and have taken on the task of managing inlaws care; they are in IL because for now, FIL is still able manage some things. But he has really neglected a lot of conditions and so we have been going to the doctor together a lot. He sees geriatrician, nephrologist, dermatologist (for skin cancer he ignored for 20 years), eye surgeon, macular degeneration specialist and a cardiologist. And except for the geriatrician, most of these doctors are clueless about the overall condition. My FIL, who has mild vascular dementia (worsening rapidly) still seems very intact when they ask him questions. I am now always in the room and really he answers questions very firmly, if not always accurately. I usually tell someone on the way in that he has dementia and won't remember any details or recommendations and I have had to guide doctors, especially the dermatologist who got really excited to see this really large skin cancer, when the treatment recommendations got too crazy.
Just because a procedure CAN be done does not mean it SHOULD be done. And that leaves family members with the difficult and painful duty of making life or death decisions for their LO's.
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disgustedtoo Mar 3, 2019
Some surgeons are just too keen on surgery, without considering the whole patient! As noted, even other doctors might not consider the consequences of their recommendations. There are those who get it though. I recently took mom to orthopedics for severe leg pain (she was refusing to walk, stand and sometimes wouldn't eat, which is not her norm.) Long ago she used to say she needed to get her knees 'done', but never followed through. Now, at age 95 with dementia, I do not consider it an option, but allowing her to exist like that WITH all that pain, no. They did xrays (compared to ones taken about a year ago.) When he came to talk to us, he said if she were 20 years younger, he would recommend surgery, the knees were that bad! Clearly he knew it was not going to be an option (and I was not going to ask for it either!) I asked if he could do an injection in the more painful knee, hoping it might prevent some pain for the time being (might need to repeat later, generally those are only good for a few months.) So far, so good....
Now I just need to get mom a new GP. The one we have doesn't take anything we bring her in for very seriously... It is in the works!
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We went through the same thing you're going through with our mom about two years ago so I under what you are saying and going through we agree to have her have the surgery but under a local anesthetic she was fine with it she has dementia but my mom was very critical the doctor's wanted to do the shock therapy where you break up the kidney stone but her urologist said she was not a candidate for that due to the infection of the kidney stone had gotten so bad if they would have went in and tried to bust it up it could have spread to other parts of her body so she was not a candidate for that but they did go in and do a small incision in her back where they inserted a catheter right up under the kidney to drain all of the urine that had built up by her not emptying her bladder all the way when she went to the bathroom she did start feeling better I would admit that but I don't think it did nothing to her memory part I know the doctor did explain to us that patients with Alzheimer's /dementia does suffer with memory loss with surgery that is the reason they don't really recommend a patient with Alzheimer's or dementia have surgery because it's more damaging to them my mom is 93 years old she still has the kidney stone but the urologist said as long as it's not causing her any pain or any damage to her kidneys that she would be fine she does have UTIs a lot matter fact they call it chronic UTI because she always has them but I have learn people's with dementia/ Alzheimer's keep UTI's' she has gone through a lot of different antibiotics because after awhile some of the antibiotics doesn't work for her but she's doing fine I just pray the best for your parent talk with urologist ask him to give you more in-depth information concerning the surgery I can't really pronounce the name it's call a nephrostomy I think it's where they do a small incision in her back so therefore she can't be pulling on stitches or nothing like that because it's not in her eyesight they only let my mom's stayed in I think it was about 4 days to do all the draining and the incision was so small you could've even see where it was once they took the Foley out you couldn't tell where the incision was because it's not like the regular Foley it's a very small Foley it goes in her back so ask her doctor about that and see what they says I wish you all the best with your mom
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Please don't be angry with me, but "Being Mortal" although a good start, doesn't really help in many instances. Although easy to read with clear examples to support his message, I don't believe it helps with the journey that many people who are travelling through illness (acute and chronic) and aging. Reading the book and living the dilemma, especially when supporting loved ones who suffered chronic illnesses for decades, completely adore life and contend with the ridiculous confines of Medicare/Medicaid, are two very different things. The author admits that his loved ones received excellent care due to their professional connections. So his illustrations are akin to walking into a beautifully lit room and choosing which comfortable chair to sit in. For many of us, the reality is like trying to play musical chairs in the dark. This happens because we don't always have a definitive diagnosis, confront agism when asking for an expensive test, suffer the impasse of hospice refusing oral antibiotic for pneumonia, or lack limitless resources. I personally felt very dissatisfied with the book because I yearned for insight in order to care for my parents. It wasn't there. As for the question, your mom needs something done to address this condition. See what procedures will allow for heavy sedation if necessary, and chose one of those if possible. Unless your mother (who lives in assisted living) has made it clear that she doesn't want intervention, should she be presented with only the choice of surgery with anesthesia, you should understand that the choice is between 1)mom WILL die in pain or 2)mom MIGHT be mentally impaired by the use of anesthesia.
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dogparkmomma Mar 3, 2019
The book is not the solution to everyone's problems but I do believe in many cases, it enables people to start the important dialogue. It is not a how to book on how to care for dementia patients at all. I found it extremely helpful.
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I am (80) with no dementia and my wife is (80) with Alzheimer’s. We have both had to have surgery within the past two years under a general anesthesia.
I meet with the anesthesiologist way in advance and ask them to use Desfurane rather than Isoflurane in the anesthesia cocktail.  I had researched that issue before. Maybe it is just the power of suggestion for me but neither of us has suffered any additional issues.
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Sanibel01 Mar 3, 2019
Thank you! There is a wealth of information on this site. So helpful!
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Post CT scan, have all your questions written down and go over everything - options, surgical vs leaving it as is, non-surgical options, if any, minimal invasion treatment, as others have suggested, what to expect in each and every option. Are there no non-surgical options (medicine, ultrasound or something?) Take notes next to all your questions/doctor's recommendations.

IF and only IF they don't think she will suffer because of it (other than UTIs - sometimes if they recur often it is better to be on antibiotic long term, say 6 months) or it will cause any other issues, then perhaps leaving it alone might be okay. I am not familiar with this condition, but from others' comments, it does sound like it would be good if something could be done, preferably without general anesthesia.

If need be, especially if they insist only major surgery will take care of this condition, seek a second opinion. Have records, including imaging and results forwarded to the other doctor. Best to make decision when you have all the information you can get and have all the options laid out in front of you!

Although mom did not have dementia at the time, one orthopedic doc told my mother no one would operate on her shoulder at her age, mid-80ish at the time. Another went ahead with it and she did fine after, went home (lived alone) same or next day, had in home PT, did all the exercises, etc. Recovered very nicely! Different doctors have different ideas and attitudes about treatments!
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gdaughter Mar 3, 2019
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I'd be asking why she's not a candidate for shockwave treatment but can guess it is the dementia that would not allow her to understand or cooperate. I can't offer any comfort in re to the results of surgery with general anesthesia and I am so skeptical of doing elective procedures when SOME md's and medical systems are after the $$$ and maybe not the welfare of their patient. Dementia may get worse on its own, and by not doing the surgery it may just be prolonging the inevitable I'm sad to say. With my own mother she had not been able to elaborate on how she felt which was, at the time, complicated by lousy or not using hearing aids. In the end she wound up in ER and the doc dx her with a bad appendix. She was 90+ at the time I recall...there was no choice. Her recuperation in hospital was a bit extended, and it was very scary because they were clueless as we were at the time--she was not diagnosed with dementia. But she did use the all famous (which made sense under the circumstances for any normal person in the hospital) line of "I want to go home" frequently. She became more herself once home, but the dementia was there and progressed which was probably going to be the outcome regardless. I just don't think the stress to the body and soul and change of environment are good especially for people dealing with dementia. I have mentioned this before, do not work for them, don't know costs...but this organization called Curadux is designed to help people with complex medical decisions and put the pieces together with a wealth of very experienced professionals. The person who started it is the former Chief of Anesthesiology at the Cleveland Clinic and a really decent human being who has been ill himself. He might be in a good place to offer advice understanding so much of this. Depending on how bad your mom is, there is also a mental stimulation program with one on one efforts called SAIDO. It might help restore lost abilities, mentally, as far as function/processing. Good luck.
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Sanibel01 Mar 3, 2019
Thank you. I had never heard of Curadux. What a great idea such a service is. I've bookmarked their page. The reason she isn't a candidate for shock wave (so we're told) is because of the location and size of the stone. Also because of the calcifications.
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I know this will sound wacky...but seriously, it's out there...for kidney stones (which I know you mention is not the case), they suggest drinking lemonade which contains the citric stuff that dissolves those made of a certain substance. Had I known that was what I had (a tiny one) a couple years back, I would have been sucking up lemonade (chick filas is the purest/highest VIt C) and walking before I went to the ER and ran up a $1K+ out of pocket tab.
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Sanibel01 Mar 3, 2019
Not wacky at all! It makes sense that the citrus could help dissolve some kidney stones. I would always rather try such a solution before medical treatment and $$$! Thank you!
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https://www.kidney.org/atoz/content/kidneystones_shockwave

https://www.nytimes.com/2006/04/10/health/10kidney.html

As neither of these may not be readable, many patients with kidney stones do pass them without shock wave and are often given Dilaudid.
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Yes, drinking lemonade is touted to be helpful.
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From age 90-93, my Mother had 3 surgeries. 2 were done under general. The 3rd surgery, I inquired if it could be done using local anesthesia, which the anesthesiologist agreed. After each of the surgeries done with general anesthesia, we noticed cognitive decline. Prior to the surgeries, my Mother's mind was sharp & had a great memory. It was heartbreaking to witness my Mother fade away with mental decline. She died in February 2018 @ the age of 94.
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Sanibel01 Mar 4, 2019
So sorry for your loss of your mother. Yes it is absolutely heartbreaking to lose our loved one by degrees. Witnessing their cognitive decline is painful.
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