Force glaucoma surgery or mom goes blind?

Kitfox

Hi,

I am new to the forums.  I have medical power of attorney over my mother instead of my dad because he is too self centered and didn't do a good job.  My mom has lost vision in her right eye that was only discovered when I took her to the ER for Shingles.  She & my dad kept insisting she fell down and that is why her head was swollen.  I didn't see any cuts so took her to the local ER.  My mom is 86 and scored 16/30 on the neurologist test at her last appointment.

My mom needs glaucoma surgery in her other eye to retrain her vision.  At the time of the doctor visits she was extremely hostile and saying she just wanted the 'suicide pill'.  She refused the surgery.  She doesn't listen to doctors but she listens to me.

So my parents didn't have a good end of life care plan in their trust that they did like 10 years ago so I helped them redo it.  My mom seems to only calm down with me and I am the only one that can get her to go to doctor's appointments.  Now that I have immediate power of attorney for her medical care should I force/trick her into getting the glaucoma surgery?

Once she goes completely blind she will have zero joy in life.  Essentially her life will be over.  But if she can still read, see birds, see the cat then I think she will have some enjoyment in her life.

I'm also mad that my dad and her primary doctor did not notice she was going blind and never took her to an eye doctor.  I'm not fixated on that but I do think less of them.

Because of my own mental health issues I do not live with them but have my own apartment.  Ironically I spent most of my life in therapy to deal with their physical and emotional abuse.  Yet now I treat them with a tenderness they have probably never had in their life - clipping toe-nails, cutting hair, bandages, birthday cake etc.

Thoughts?

SunnyAB

Patients are usually awake during glaucoma surgery and that means they need to be very cooperative. If you are suggesting doing this under general anesthesia, be forewarned this could further advance the dementia. Also, I don't think you can force medical procedures on someone, especially someone who is conscious and able to object, even if you have medical power of attorney.

SusanB-dil

Hi Kitfox - welcome to 'here', but sorry for the reason.

There are others here who have more experience with this, but I agree with Sunny, that it would probably not go so well unless she is not combative, and way more cooperative.  And that is true about general anesthesia... it can make things go worse, and that 'worse' may or may not be temporary, depending on how far along and what medications she may be on. 

I do wonder if your dad is having any cognitive issues... hence the seeming denial that there was a problem of a swollen head from falling, and that there were eye and vision issues.

Kitfox

The doctor had said they would recommend an Ativan in the morning and that they would be sedating her via an IV but not general anesthesia.  I think I can convince her to do this willingly but I was throwing out there a worst case scenario.  

My dad is a narcissist.  Yes he is cognitively impaired from hearing anyone else's opinion and taking care of himself first.  It isn't just neglect now but neglect of everyone our whole life.  My parent's both lost their mothers when they were young and both have lived through the trauma of wars.  I think for a long time everyone in my family. (including my two older sisters) have been in denial about the Alzheimer's and were telling themselves it was just short term memory loss but I could tell the difference.  The main difference is that my mom started being nice to me.  It went from 4 years ago, her telling me she regretted me being born and I was the cause of all her problems to me being the person that can distract her or calm her down.  I have printed out things to educate my father and point out that this isn't going to reverse itself and he has to make sure she takes her medication and eye drops (I go over at least twice a week to check up that things are being done).  They absolutely refuse a live in carer or even to pay someone to come.  I have networked and found a couple older ladies through my dad's church that can come to talk to my mom or keep her company when I take my dad to doctor appointments.

I could give numerous examples through my life where my parents (& sisters) both were absolutely unconcerned about medical situations like me having a seizure.  Even after I took my mom and got the shingles diagnosis, we had a 2nd opinion, and she was responding to the medication - my oldest sisters was like 'Maybe it is eczema.'    I don't know how to put this but my sisters were honor students and now in their late 50s/early 60s - no drug/drink issues but my oldest sister I think takes after our dad and downplays things.  Considering her husband died of covid at the start of the pandemic - I'm not sure what goes on in her head.  Pretty much I always go to the ER as I am the one who can truthfully relay information to the doctors.  I am also in charge of their online medical charts (they are not internet savvy) and communicate with their doctors if I feel my parents aren't giving them the full story.  So basically I cannot receive any support from my sisters and they frankly p-ss me off very often.  They don't live here and refuse to come down for important events.

My oldest sister is the executor of the Trust even though I manage some of their assets.  I started keeping track of the time that I spend on things with my parents since my sister's don't seem to consider it work.  I'd say I have another 6 months in me before I burn out being a care giver.  I try to keep my boundaries firm (ignore the multiple daily calls which are unnecessary).

I know I am all over the place in this posting.   Basically if I tell my dad to stay out of it and not get my mom worked up - I can usually converse with her well.  My dad is 93 and broke his hip 2 years ago so he walks with a cane.  My mom is fine navigating around the house on her own but when I take her to the doctor she needs to hold me hand.  I got them a cat as theirs had passed away years ago.  It is technically my cat and I check on it weekly.  It has lightened the mood in their house as they both take pleasure in how pretty the cat is (siamese/snowshoe) and watching her play.

I've noticed my mom has been writing things down a lot that she is afraid she will forget.  First it was my phone number but I have noticed her writing the cat's name down.  So I am working on a book of photos everyone in the family, the cat, and anything else that she will eventually forget.  So it will have a picture of the cat and say Sophie up top.  It won't prevent the inevitable but maybe when my mom is feeling insecure in her memory she can reference the book.

Also I am financially unstable because I am constantly needed by my parents.  This year they have paid my rent but not much more than that.  I do dog sitting to make up the extra money.  I also rented out their rental house and raised the price so even though they pay my rent they still make an extra $800.  Once my sister takes control of finances she will cut me off completely.  My parents are not financially hurting  but have lived their life very frugally.  But the local assisted care homes in our area run around $6500 a month.

Kitfox

To clarify:  My sister is the executor but extremely slow in making decisions and since she is financially stable she will take her time selling off the assets so the property is divided three ways.  She has no issue with me becoming homeless by her actions in the past.  So I need to find a real job so I can have financial stability.

ninalu

Hi Kitfox,

Given your mom's age and dementia status, I'd consider not just the surgery protocol but the post-operative care. For many surgeries to succeed, post-op is crucial. Dementia can make that care extremely challenging because the PWD doesn't remember not to rub their eye, or to do whatever it is that needs doing to maintain a successful healing outcome.

So, given your mom's home status, can you ensure that a surgical intervention will have the necessary follow-up to ensure good healing?

I had to opt out of getting my mother retinal re-attachment surgery when her vision failed in one of her eyes. I felt the same way you describe - mom's quality of life would be terrible without ability to read, etc. The fact is, even with my 24/7 hands-on care post-op, Mom wouldn't have been able to adhere to the recovery protocol. So it likely would have been a successful surgery, but a stressful and failed post-op, which is a net failure. 

Just one data point, but my mom is doing fine without good vision in one eye. Yes, it has made some things harder for her, but dementia is responsible for the majority of her challenges and reducing her stress (no surgery) was a good choice for us. 

Hope this helps. 

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Kitfox

Nina -

I am so sorry you had to go through that.  The thing is that she is already blind in one eye so she will be blind in both eyes.  Usually if I write things down then she & my father can adhere to it. But yes, I'm not 100% that she will keep up with the eye drops.

Kitfox

Victoria2020 wrote:

Kitfox wrote:

To clarify:  My sister is the executor but extremely slow in making decisions and since she is financially stable she will take her time selling off the assets so the property is divided three ways.  She has no issue with me becoming homeless by her actions in the past.  So I need to find a real job so I can have financial stability.

Kitfox- Survival is not selfish, it is rational, you have given  of yourself for years and you know how finances will be when your parents pass on.

If Sister is being tight now and taking advantage of you, what if you found a job , gave notice, and then she'd have to decide whether to pay you fair wages or $6500 a month to assisted living. And having an employment contract wouldn't be unreasonable. That way you'd have a possible lien on the estate if she doesn't pay .

Decide what you feel comfortable with and then get legal/tax advise .

Best wishes, your parents are very fortunate.

Thanks Victoria.  I did try to quit at the start of July but I admit that I am not perfect and got overwhelmed job hunting.  So I fell back into the pattern of helping my parents and dog sitting.  I am actually working almost 1/2 the month doing dog/house sitting as I have some affluent clients and they have two houses.  So I take care of the dog when they are at their other house.  But you don't get rich doing this and after awhile you just want to be in your own bed.  I also needed surgery this year so I intentionally stayed underemployed so that it would be covered by medicare.  (Yes and I did all my own post op alone & had to arrange my own transportation to and from the hospital).

 

I believe what my sister would intend to do is withdraw any support and force me to move into the house with my parents.  My mom is a hoarder so the house/garage is going to need to be cleaned out after she passes.  My sister doesn't want to do that and I have already cleaned out the secret storage unit my mom had.  I'm ruthless and able to toss like all of it.  But this all comes at the cost of my own mental health.  My apartment is a disaster and I think I need someone to come help me clean it up.  After my emotional support pug died in December I just didn't have enough energy for everything.  (She was 14 and a wonderful dog.)

 

Truthfully after my parents pass and I get my portion of the inheritance then I plan to never see my sisters again.  I want to go to like Thailand or Laos and just be the eccentric woman with a bunch of cats.  I don't have any extended family in the US and am not close to the family I do have in Europe. I have bailed my sisters out numerous times but it has not been reciprocated.  I've had enough therapy to know when to give up building a bond with them.

 

I need to find a full-time remote job (I have the skills and job history), quit caring for my parents so they have to hire a carer, and take my life back.  I've been living in my hometown which I hate for 5 years and being their carer for about 3 of those years.  I have always lived the farthest from my parents to avoid their toxic nature and had no idea that life would take a turn where I ended up back here and taking care of the.  You are right.  My parents have no idea how good they have it with me.   Luckily their neighbors see what is going on and give me support and also help me out sometimes when I don't want to go over to their house and I can text them to go check up on my parents.

I am not kind to my parents because they were kind to me or in any sense paying them back for raising me.  If I was, I wouldn't be helping them at all.  I am kind to them because I am a kind person and just as I would help someone who fell down in the street or take someone to the ER that needed to go - they are old people who need help.  But I do ignore stuff like my dad already called me today because CVS is calling him and he doesn't know why - he can call CVS himself.  I just ignore my phone.  It is my birthday this Friday and I felt like saying they missed a zero on the 'birthday check' they gave me.

If I could push to be the executor of the trust, I would.  I already manage their rental house, I sold one of their collectible cars, handle all the medical stuff, and have more life experience and connections to liquidate the assets.  I have also told my sisters that I want nothing sentimental from our parent's house as I do not have children there is no point in having any old photos and such.  Both my sisters have furnished homes so there is no need for the furniture which we would liquidate (mid century modern).  I just want the cash and to go.

harshedbuzz

Kitfox-

I am very sorry for the situation in which you find yourself. Dementia sucks. Being caregiver for a parent with whom you never had an easy relationship is a special kind of suckitude. 

There are books about caring for parents who didn't care for you.

To your mom's situation. It's a toughie. There's no point dwelling on her PCP missing signs-- they operate under the assumption your mom is seeing an eye care professional of some sort. And sometimes vision loss can be subtle or not processed by a brain that is damaged by dementia. My dad had a retinal detachment in the early middle stages and did not report any symptoms-- it was picked up during a routine vision exam.

Blindness could really impact your mom's ability to remain in her own home safely. With dementia, she won't have the short-term memory to learn strategies for low vision. That said, as dementia progresses, how well her brain can process visual input will change as well. There comes a point where the eyes might see but the brain doesn't register the image. 

Aside from the concerns about actually getting the procedure done-- getting mom calmed down, use of anesthesia and what after-care looks like-- I would ask what a "success" looks like. My dad's retinal detachment was successfully repaired. The procedure required travel and a 2 week stay while dad had to keep his head down 24/7 and the take-away is that he was able to detect light, shadow and movement. While this is huge in terms of safety, it isn't a result that would allow someone to read or watch TV.

HB