I took mom for a routine physical last week and the Dr said she has umbilical hernia - her belly button is big. I don't know how long mom has had this hernia because she has lived with me for two years. Before that, she was in our home country, India, in a senior community and never went for routine checkups.
I got her here in 2019 after "dragging" mom to a very quick checkup in India (blood work, BP only), skipped all Drs last year.
Mom is not in any pain or discomfort and says she doesn't want any surgery and to leave her alone. The Dr says we have time to think this over and as long as the hernia is not infected or collapses, mom should be ok.
Mom has moderate dementia and I worry about the anesthesia affecting her badly even if it's a small surgery. I also have to now switch insurance plans to get a lower deductible.
Thank you for sharing your thoughts on this.
Obviously she is doing well enough that you are not helping her with many ADL's or you would have noticed a hernia when bathing or toileting her.
You are right to be concerned about anesthesia effecting her cognitively.
I would get another opinion as to how critical this might be.
While I would opt not to have the surgery done on my loved one I would have to find out the What would happen if scenarios.
On the other hand if she is to have the surgery the sooner the better, she is in better health now than she will be in 6 or 12 months. (I am talking cognitively)
Know that she will most likely decline a bit following surgery.
If she is not doing anything that will make the hernia worse it may not get worse, but even straining with a bowel movement could put stress on the abdominal area.
Rereading my response it sounds like I am sitting very much on the fence ready to go either way.
Mom is 85 yrs old , vaguely understands surgery but forgets it immediately. She has not showered in a month and will changer her sari (Indian dress) only if I beg/get angry at her because she stinks. She just sits all day and will walk around the house and is not in any danger of making the hernia worse. She goes BM regularly and I am not worried about her straining her bowels.
However, Im worried about her declining - already Im cleaning her poop and pee when she doesn't get to the bathroom on time. She's not ready for diapers yet. I dread taking care of her after surgery even if it's a minor procedure. My hate will be aggravated by the fact that my brother is away from all this in another country and does nothing to help me.
I had a hernia, I saw 4 different surgeons over a 5-6 year time frame and the difference in recommendations kept me from getting it dealt with. It finally started bothering me and I saw another surgeon and she did a small incision and stitched the tear, others wanted to put mesh over my entire abdomen and that meant a week in the hospital and multiple incisions, big surgery, especially when one stitch handled the problem. So, I am very leery of surgery being the 1st recommendation and think that second and third opinions are always a must and keep an eye on it, wait and see is perfectly viable for some situations.
I would ask if it strangulates would it be a bigger surgery and what are the statistics that it would ever be a real issue for someone that isn't doing heavy labor. Because it could be a non issue or it could get worse with the wait and she will only be less able and more at risk as time goes by.
Any doctor that gets offended because you want to have a second opinion should always be your ex doctor, because they think they are infallible and that never works out well for their patients.
Best of luck getting this sorted out.
Edit: I just read your response to grandma.
Mom is ready for adult incontinence products if she isn't making it to the bathroom every time. Use the pull up type and they will help make your life easier, they are just her new panties that help you.
At 85 and not remembering, yeah she is at risk of decline that pushes her over the edge. I think that I would get a second opinion and ask what to keep an eye on and let it be.
Are you able to get an aide to come in and help shower her? That would help you and her.
It sounds like she is pretty far into the dementia journey and you have to take care of you first. Please try getting some help with her so that you can get out and have a break and time to care for you.
Mom hates aides and will sit in her room & refuse to come out. I had neighbors sit with mom while I worked and she wouldn't talk to them till I was almost home.
Also in one of your responses below, you state that mom doesn't always make it to the bathroom on time and that you have to clean up pee and poop, but yet you don't feel she's ready for diapers yet. Really??? I'm not sure I'm understanding your thought process on that one. Why would you not want to make your life and caregiving duties as easy as possible? If she's having accidents, then it's time to buy her Depends. They make pretty ones for ladies, and I would recommend never calling them diapers in front of her, as that can be humiliating for a person. Just call them her new underwear, or panties. I wish you the best in caring for your mom.
Thank you for helping me clarifying my own thoughts about D vs cleanup!
I think that you can only make decisions about this with the MD with a full discussion of the risks of leaving this hernia unaddressed. The bad outcome you do not want is that a section of bowel can move into this pouch and become trapped there, then that portion of the bowel can die, leaving what amounts to infection and disruption in the entire gastrointestinal system. This complication can lead to death. This is why doctors want to address the issue before something like this can happen. For information on this condition look up "Umbilical Hernia with incarceration or strangulation of bowel". This will give you the dangers that "could" be on the horizon.
Wishing you the best. Consult with the doctor and explain your concerns about anesthesia. Some surgeries are very quick and more surface and superficial, and minimal amounts of anesthesia can be given.
Hoping for the best in your decision here.
Thank you
Dr Gawande shared his father's (also a medical doctor) experience. He refused to stay in the hospital and came home to die. His wife's goal was to keep him awake as much as possible. His own goal, which he privately shared with his son, was to avoid pain. Those goals were conflicting.
In your case, do you feel that you know your mother well enough to know what she would decide?
If it was major surgery, I'd not even think about doing it but everyone says the hernia is one-day surgery.
Mom will not want the surgery at all. I spoke to Drs in the family based in India and they all recommend the surgery "before the hernia gets infected, strangulates, why take a chance?"
You wrote back in September that you had taken leave from your PT job. Is this still the case? What happened to your mother while you are working?
You wrote that you would be okay putting her in a MC facility when the time comes. Yet you also stated that you don't know how that would be paid for. Your mother isn't eligible for Medicaid, correct, since she came here from another country?
"I dread taking care of her after surgery even if it's a minor procedure. My hate will be aggravated by the fact that my brother is away from all this in another country and does nothing to help me."
Is your brother one of the family members in India who want the surgery? What do you expect your brother to do to help you?
"She has always been lazy about hygiene and my bad luck that now I have to deal with it. It will be a battle to get her to wear Depends. I will not change her Depends- no way."
So what is the plan as your mother becomes incontinent, if you will never do Depends? What is the plan for her long-term care? Right now it looks like YOU are the plan.
Brother is in another country (not India) . He has left all decisions to me because he doesn't want to care for her. I expect him to contribute monetarily to her insurances costs. He will not do this because it was my decision to bring her to America - he preferred mom to stay back in India with an aide and spend her own money. But he would not help in supervising the aide from far away and there was noone else to check on the aide and so crazy things happened .
Yes, of course I AM THE PLAN now
There is no long-term care plan yet. For the time being, I will throw away her soiled clothes and washing them is easier than struggling to put Depends on her. We don't have the money to put her in a AL/NH here with private pay. I could take her back to India, use up her money, hire an aide and get migraines again as I stay up at night due to the time difference.
Im trying my best to detach from mom and do what's right for my family..it's much harder than I thought.
BTW, if you haven't already checked with Medicaid or an EC attorney, perhaps this can help:
https://www.agingcare.com/articles/medicaid-and-long-term-care-133719.htm
Medicaid can be available to "qualified non-citizens" - depends on what your mother's status is. I should think if she were only here on a visa, it would have to be renewed over and over. She must have some other status to be able to live here.
Another lookup (healthcare.gov) gave these and other names/relationships:
The term “qualified non-citizen” includes:
Lawful Permanent Residents (LPR/Green Card Holder)
Asylees
Refugees
others...
There is still the 5 year "look-back" requirement. There are additional state regulations (primary are residency and income/assets.) The NHs also have requirements. But, if you haven't explored any of this, you should. No guarantees, but a few phone calls should determine if she might qualify. If the Medicaid person who takes your call doesn't sound especially certain, ask for a supervisor.
IF she qualifies for Medicaid, but not a NH, Medicaid often pays outside help or family members for some in-home care - it isn't full time, but every little bit helps! Although she has rejected the aides, perhaps you can find someone, maybe even someone of East Indian descent, that she might eventually mesh with. While companionship is often hoped for, the primary goal of having an aide is for care purposes. A good aide who has worked with dementia patients will have a skill set that can help them break through. I wouldn't give up hope yet...
(p.s. I also wouldn't listen too much to the relative docs back home - they mean well, but if they haven't examined her or have expertise in those fields (hernias AND dementia), they shouldn't be armchair diagnosing and suggesting surgery. An ultrasound, a second or even third opinion (not a referral - find someone unrelated, but wait for the imaging) - as others noted, if it isn't causing her pain, perhaps it can wait longer or just leave it alone. If it's really small, but all agree she needs the repair, ask the surgeon if they can use a sedative and local anesthesia or an epidural - I had foot surgery without anesthesia (they wrap the lower leg and use something in the foot only.) The sedative knocked me out!)
I will try to forget my brother but it makes me so sad to see my husband stepping up and doing everything my brother should be doing. However, my very patient husband is also now getting annoyed by my brother. I guess I should show him all the" siblings not helping" posts here. I will look up the Medicaid info and I am taking mom for the ultrasound.
Have a good day.
pain then you should do as mom says and leave her alone. No Surgery.
There are a couple of concerns with these types of hernias. One, obviously, is it getting bigger and causing discomfort. The bigger it is, the bigger the job of repairing. The second more concerning issue is the risk of it getting trapped and strangulated. Sometimes only a little abdominal fat gets trapped and sometimes the intestines themselves.
If the opening is quite small it is easier to repair but also higher risk of fat or intestines to get strangulated. I am a family practitioner not a surgeon, but I would consider a small one to be about the size of a fingertip.
Get familiar with the feel of the hernia and with reducing it. Does it slip back inside easily when she lies down? Or does it need encouragement? If it needs encouragement the the risk of strangulation is higher. If it does get stuck out it will be painful and tender. You will need to be able to reduce it quickly if possible. She may only complain of “belly ache” as the nerve fibres are different so the sensation is not the same as for skin. Red and swollen and/or very tender MUST be seen by a surgeon as it may have strangulated. Even strangulated fat would possibly need to be removed to avoid more serious infection. Just a bit tender and uncomfortable for a short period get her to lie down and relax and see if you can gently wiggle it back in. If you decide against surgery and it does get trapped then you might want to reconsider.
I would also have a discussion with a surgeon about the possibility of a repair without a general anaesthetic. Again I am not a surgeon or anaesthetist but what about regional anaesthetic and sedation. The surgery itself would be quite quick usually (sometimes only 15 min or so) unless it is dealing with a strangulation or obstruction when surgery may be much more serious. Just some thoughts that I hope you find helpful.
As far as her bathing goes, I wonder what her circumstances were when she was younger. Is she more used to having a wash than having a shower? I wonder if she would be more comfortable having a shower chair and a hand held sprayer or even a bucket and jug. And of course a warm bathroom!
I’m inclined to agree that you may want to consider getting her used to something like depends, at least sometimes. If she hasn’t worn underpants for years you might have a battle! But at least for urine they are very good and you can remove them by tearing them at the sides. If her incontinence gets worse and you do end up needing to get her in a home or hiring outside help they might not be willing to deal with incontinence without them.
Good luck!
Even in the United States MOST doctors do not care about you or your loved one. They just like pushing drugs and get money, and if they have the opportunity to cut they will do that. They live champagne and caviar lifestyles, driving around in their Rolls Royce living it up as multimillionaires -- all they care about is getting money. You have to live with the consequences. They are greedy people in cahoots with pharmaceutical companies paying them money hand-over-fist!
Do not do surgery unless it is ABSOLUTELY necessary.
https://www.asahq.org/madeforthismoment/preparing-for-surgery/risks/age/
Pay close attention to how the hernia looks and how she feels because any indication of it being strangulated or "pinched", you will have to act on it quickly with surgery.
Once again I recommend the book by Dr. Nortin Hadler: Rethinking Aging: Growing Old and Living Well in an Overtreated Society.
There are way too many tests and treatments and people do not consider the risks vs the (maybe) benefits.
BTW, I think I've had an umbilical hernia for almost 40 years, and I'm still here. No pain, no problems.
1. What is your mom's quality of life at this point? If she has a low quality of life and getting this operation is not going to help then you need to decide if it's worth getting this surgery.
2. What does your mom want? You said she is doesn't want the surgery. If she can weigh the pros and cons and understand the consequences of not getting the surgery, she decides to make it.
Try to focus your decision on what she want's; this is hard for families to do because they often feel the senior is using poor judgment. We all make poor decisions from time to time, but that does not give someone the right to make decisions for us.
Look online at bath chairs to see if one would work for your mom. My age-90 mother-in-law angrily refused to take a shower or bath. We opted for bath since she never took showers growing up, and purchased a bath chair. She sat covered with a towel, then slide over the tub, then push the remote control to lower the chair into the water and remove the towel as she got in the water. The chairs that go down into the water are more expensive but may work well for you. Remember that older women get cold easily, and don't want to remove clothing to change or take a bath! Be sure the bathroom is very warm (too warm for you) so Mom won't get too cold.
https://www.naeturalhealthinformation.com/hnh-herbal-comfrey-poultice.html
leave the hernia alone.
no pain? leave it alone.
many people can live years and years with asymptomatic hernia.
operating can kill an older person.
absolutely not worth the risk.