Parents caring for the parent support thread (Part 1)

Parent Cafe
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http://www.heart.org/HEARTORG/Conditions/More/HeartValveProblemsandDisease/What-is-TAVR_UCM_450827_Article.jsp

How is TAVR or TAVI different from the standard valve replacement?
 This procedure is fairly new and is FDA approved for people with symptomatic aortic stenosis who are considered a high risk patient for standard valve replacement surgery. The differences in the two procedures are significant.

What is involved in a TAVR procedure? 
Usually valve replacement requires an open heart procedure with a “sternotomy.”, in which the chest is surgically separated (open) for the procedure. The TAVR or TAVI procedures can be done through very small openings that leave all the chest bones in place.  A TAVR procedure is not without risks, but it provides beneficial treatment options to people who may not have been candidates for them a few years ago while also providing the added bonus of a faster recovery in most cases. A patient’s experience with a TAVR procedure may be comparable to a balloon treatment or even an angiogram in terms of down time and recovery, and will likely require a shorter hospital stay (average 3-5 days).

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^ @scoutsmom this must be the procedure explained to me, but it is performed even locally. Confused why Miami was the only place mentioned as an option for this procedure. What a good option vs open heart surgery.

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My mom’s doctor is suggesting the one through the groin. …like a Stent and not being put on bypass. I think if they give her the okay, she will do it. She has the swollen ankles and shortness of breath, she is symptomatic. She also has chf, she has shingles and a uti again. She also has such severe osteoporosis and spinal stenosis she can barely walk or move. They wanted to wait until she was recovered from shingles which she’s had 2 months now with no signs of recovery yet. The bigger question may be how much longer her ccrc will let her live independently.

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^ a 60’year old friend developed shingles, treated and resolved. 8 months later she was diagnosed with breast cancer, and top upenn dr, suggested anti viral treatment when she had mastectomy, because the stress of surgery could cause shingles relapse.

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Shingles is tricky. A relative had shingles, and we have no idea whether the shot would help prevent a relapse. But in their case, they were medicated within hours of the first rash and had only a week of pain (they were under 50 years old though).

Acyclovir, which is the oldest and most studied antiviral, is pretty safe (you can look it and Valtrex (a newer antiviral of the same class) on drugs.com, and see how significant the difference in side effect profiles is); can even take while pregnant or breastfeeding. Problem is it is 5 times per day, and if compliance is an issue, they tend to go with fewer doses per day of antivirals with less safe profiles.

It’s very difficult and sad when there are multiple conditions. One doctor says “must do this” but the multiple doctors never seem to be on the same page. The ultimate question may not be “will the surgery work and give a benefit?” it might be “will the stress of the prep and surgery and recovery outweigh any possible benefit of the surgery?”.

Yet journal articles indicate survival of patients over 80 who get heart valve surgery is comparable to those under 80, for example:
http://www.sts.org/news/people-older-80-fare-well-after-valve-replacement-surgery

(which includes an interesting take on being home after the hospital stay vs. specialized rehab vs. general rehab)

My thoughts are with everyone going through health difficulties with their parents. My dad is near 90, and knock wood, is pretty much okay. I know how fast things can change though, luckily after my mom passed he religiously goes to the GP and gets blood work and cardio workups done. Worried about osteoporosis though, and do think that doctors don’t look at “old people” the same way as they would a younger person - osteoporosis is considered “par for the course”.

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How many of us have parents seeing a geriatrician? Maybe that would offer the better (an rounded) perspective for an older relative considering surgery. (Assuming a good doc, that is.)

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@dragonmom, I am sorry!

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My extended family and I have been seeing a geriatrician for over 40 years. He’s also supposed to be my kids’ internist. He definitely has the “big picture” view and tends to be more conservative and less aggressive about invasive procedures.

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Glad the thread has been quiet I think. I hope it is because our seniors are settling in / settling down and we are taking a break or focusing on you know, college stuff or back to school stuff.

Since we got hospice for Mom, they have been called twice. Mom was not able to talk or understand simple directions once and once was really unresponsive in bed. Both times she has bounced back. Both times, I am really glad she was not dragged to the hospital! I didn’t dash up to see her and am glad (and sad) I didn’t. My DH makes me want to scream with his exaggerated sense of how much time she takes from me. But it IS probably helpful that I am restrained from going too often.

Private care givers in place are doing a good job, I think. At least there is more information and Mom is being watched for how much she is eating. It is the AL place that keeps calling hospice.

We are going on vacation to Germany for two weeks with friends. I need a lot of crossed fingers that nothing serous happens while I am gone.

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The I.C.U. Is Not a Pause Button
http://opinionator.blogs.nytimes.com/2015/08/26/the-i-c-u-is-not-a-pause-button/

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esobay, I am so glad that having your mom on hospice has prevented hospitalization twice already.

My sympathy and empathy about the planned trip to Germany.

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Crossing fingers for you, esobay. I know the feeling. S1’s wedding is this weekend and I’ve been crossing my fingers for weeks that nothing happens with my mother until I get back.

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"Sorry, but I’m not a fan of prolonging an older person’s diminished life just because technology can do that. "

I have a friend who has been bedridden for at least 5 years, and is raising a young child with her husband. She has not eaten food for at least 15 years due to a rare illness. She has relied totally on IV nutrition. It is abundantly clear that she would have been dead in her mid-teens except for “technology”.

One of the things she does is work with a local medical school to teach them to care about patients’ feeling and concerns. She is also a registered nurse, she had been able to complete college when on TPN but not near bedridden. She is bedridden now but her mind is in pretty good shape and she has a team of doctors who help her.

What is diminished? And for that matter, why is someone diminished - is there permanent brain damage or are neurological and cognitive symptoms due to another condition?

I think YMMV matters a lot.

It should be very obvious to anyone that if any of the following are true, “elective surgery” (which includes anything not in the ER, literally) should be carefully considered and possibly not done at all:

  • patient is combative in every day life, even over simple things like getting dressed or using the bathroom or bedpan
  • patient can’t keep track of their own medications and day to day tasks
  • patient is afraid of the hospital
  • patient won’t do light exercise like walking or movements while in bed or wheelchair, even with guidance
  • patient has existing wounds that won’t heal - bedsore, lesions, previous surgical sites that didn’t heal

The only caveat is if the doctor indicates that the surgery has a good chance (how good is the chance?) to make a patient who has neurological/cognitive symptoms improve significantly, that can help tip the balance.

As many know, Jimmy Carter is getting cancer treatment despite his advanced age. Is his life diminished? How about Toni Morrison - she is in a wheelchair due to failed back surgery. She can’t do some things she used to do, but she is writing still.

I think each person’s case is individual. If someone is able to go to doctors and get screened and tested for various conditions, the doctors should also know whether they are a good or bad candidate for surgery, and should also be able to hook up caregivers with hospital social workers (if their practice doesn’t have one) to go over tough questions.

I wish everyone strength in dealing with these issues.

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Wonderful essay oldmom. Thanks for sharing.

rhandco- the example patient used in the essay, is, in this nurses experience, the typical patient in the ICU. These patients should be allowed to die rather than being “held” in the ICU for long periods of time. This patient is very unlike the productive examples of Toni Morrison, Jimmy Carter, and your friend. The writer of the essay would agree that each person’s case is individual.

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@esobay, it’s hard when we have loved ones who are in poor health and we have a trip planned. I know that when my FIL was in the hospital when we had a 3 week trip to Europe planned and we were weighing whether or not to go, we ultimately decided to go and see him on the way back from our trip because there was nothing we could do for him that wasn’t already being done by my sis-IL and BIL. When we were able to visit him in the hospital on our trip, while on our way home from Europe, it took quite a while to convince him that H was really H and not BIL. Once he FIL was convinced that H was really H and returned safely from his trip, FIL seemed to relex. FIL died peacefully at the hospital after we got back to HI, after our visit with him. We think he was waiting to be sure all his kids were safely back in their respective homes. For us, going on the trip as planned was definitely the right choice.

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Fingers and toes crossed, eso.

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Keeping a good thought, eso. I think the situations we are facing are likely a large part of travel insurance companies’ profits.

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Yes, like tuition insurance for our kids in college…

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@oldmom4896 - thanks for posting the NYTimes article. It’s excellent and so relevant. I passed it on to my husband and brother.

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My mom was in the hospital again for her congestive heart failure for a few days. She lives in an independent apartment at a ccrc that has a rehab floor and long term nursing. She’s going next week to the cardiologist to discuss the valve replacement.

She went to rehab and decided she didn’t feel like staying so she essentially ran away and went back to her apartment. She was calling all of us to call her place to let them know she wasn’t staying in rehab instead of doing it herself.

My brother called and let them know what she did. I don’t know who drew the short straw, but someone went and brought her back. I believe she was gone over 3 hours so I can only imagine how difficult she was being. I can only say I’m so glad she’s there and we’re not having to handle this by ourselves.