I am a 70-year-old male who met a wonderful woman in February of 2019. Much to my own surprise, I proposed marriage three months later. She moved in with me and we've had a great year together. Oddly enough, if I had it to do over again, I don't think I would have proposed. The few bad times, as rare as they are, usually found me wishing I was alone. But I thought I had matured out of that. The worst possible event has convinced me otherwise.
She recently had hip replacement surgery that has left her in chronic pain and with uncertain prospects for recovery. I have become her caretaker 24/7. In addition to all the usual issues ("what happened to MY life..."), I have some experience with this. I tried to serve as a full time caretaker to my late mother afflicted with dementia some years ago. It nearly killed me. LITERALLY! I wound up in the hospital for five days.
Naturally, I would prefer not to repeat that history. I think I can do the extra laundry, clean the house and wait on my finance hand and foot. What I CANNOT do is watch her suffer in agony while waiting for the next dosage of semi-ineffective opioid pain medication. I could not watch my 92-year-old mother go through that either and when the option came to allow her to die peacefully in palliative care, it was a comparatively "easy" decision.
This is far different. Karen is only 67. Living with sexual impotency is one thing. Living with the practical circumstantial impotency of being unable to deliver a loved one from chronic pain is MY emotional disability. I want very much to end an engagement I should not have entered into much less enter into a marriage under conditions I would never ordinarily consider were I just beginning a dating relationship.
I wouldn't think of doing it at this point, however. What little family she has is several states away. And I have none. I am committed to trying to facilitate whatever recovery she might realize over the next several months. Assuming something like that happens, however, I am strongly tempted to break things off at that point so that I never have to face the possibility of something like this again.
I, myself, would rather die totally alone and racked with pain in my own bed. I would no more wish my dependency on another than to have it imposed on me.
Am I wrong?
I follow on Facebook a page set up for one of the police officers severely injured in an ambush shooting of cops a few years ago. He is basically now a quadriplegic and will need lifelong care, which his caring parents are providing.
He was engaged to be married to a very caring woman who loyally stuck by him for about a year or so after the shooting. But then there seemed to be some general understanding that she was young, and that she needed to be able to move on with a life in which his lifelong care was not her lifelong responsibility.
On the face of it, you want to hate the woman. What happened to "till death do us part" even though they were not yet actually married? What happened to love, loyalty, duty? Yet I totally understand the woman's situation. Things totally changed, and she apparently recognized what she could and could not handle. So I would caution people not to judge.
For this case, my suggestion would be not to just totally abandon your fiancee until you get a better sense of her future care needs and prospects for recovery. You did complicate your life more by the sharing of a house when you now want no legal or other entanglement with this woman. Not sure how you get that resolved. I will say that you should do what you feel best for YOU, no matter what you may have promised in the past, and no matter how others may judge. You don't have an obligation to provide lifelong care, and if she is a decent person, she wouldn't want that from you either. Follow your heart and good luck!
I'm wondering if there are any teaching hospitals in your area. I've found that doctors who participate in teaching and interacting in that environment are often ahead of the curve on applicable research. In my area, they in many ways are light years ahead of some of the local practitioners.
I also found some good and understandable info on CRPS from the NIH. I've relied on their articles and found them very useful, when they're not too technical. Note their observations on PT.
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet#:~:text=CRPS%20is%20characterized%20by%20prolonged%20or%20excessive%20pain,CRPS-I%20%28previously%20known%20as%20reflex%20sympathetic%20dystrophy%20syndrome%29.
Also, please check your PMs.
You both have suffered big losses in the past few months. That takes a lot of processing and adjustment, I know you want to do what you can to "fix" things and this does not look very fixable at this point. That's a very hard pill to swallow.
You are in the caregiver role and caregivers need to look after themselves - you know like in a plane - put your oxygen on first. I hope you are dong some things for you in all of this. Eventually counselling would be good, I am sure.
Relentless intractable pain is a h*ll of a deal as is being on strong drugs for the pain.
I hope you find some support here and keep us up to date.
Prayers for you and for Karen. (((((((((((hugs)))))))))))
On Tuesday, over two months from her initial hip replacement surgery, we FINALLY had our first neurological evaluation complete with nerve conduction studies. The doctor flatly declared that Karen had suffered severe nerve damage with several nerves or groups of nerves having been completely severed. Much of it was technical and over my head, but I think the total damage was placed at about 80 - 90%. I specifically asked him about nerve reattachment surgery (something else I had researched), and he all but ruled it out based on WHERE the nerves had been severed.
Karen keeps clinging to whatever shred of hope any clinician even mentions in passing. Meanwhile, I have never been more depressed in my life and I cannot keep from believing that she will never regain use of her leg. I certainly do not think that physical therapy has a ghost of a chance of being productive until some doctor figures out how to mitigate her pain so that she can substantially participate in, not only her scheduled outpatient therapy, but actually do all the exercises she is requested to do at home.
At some point I will probably get some emotional counseling from a therapist, but, for the moment, that's how things are going.
IMO, you seemed to have moved very swiftly, probably too swiftly, on marriage proposal and joint house ownership, which has added complications to your life.
Are you right or wrong? Not sure. Marrying or staying with someone you feel you can't care for when they are in dire straits seems wrong to me. That would appear to me to rule out any marriage for you
I do think that your feelings/reactions now are, at least in part, tied to your experiences with your mother and that stay or go you would benefit from some professional help in working these out. It seems to me you are not ready for the commitment of marriage.
That doesn't make you right or wrong or a bad person We all have made some unwise decisions and, hopefully, learn from those experiences.
I commend you on the proposed path of staying with Karen until she has a way ahead independent of you, and of you getting legal advice to resolve the complications of your present arrangement.
But in many respects, this is less about my mother than the poor example set by my father. But merely bringing THAT up only cues the brick throwers here to start assaulting me for making excuses for myself.
But, yes, I know EXACTLY where you are coming from, and you are right.
In my world, I would take Karen to a "different" surgeon(s) to find out if there are any other options (such as revision surgeries to cure the root cause of her pain so she doesn't have to live the rest of her life in severe pain).
That's what I would do in "my" world (whether I was still in love with her or not). Everyone is different thus handles situations differently. I'm not a person who accepts what a doctor/surgeon says until I get different medical opinions. With my own personal experience with doctors I do NOT place them on a pedestal as they are human and make mistakes.
Jenna
If any of these other physicians suspect that the root cause of her pain could be successfully addressed with additional surgery, then I am quite certain she would consider that.
But, yes, determining the ROOT cause of her pain is the primary objective right now and it makes no more sense to me to assume that a revision surgery is the answer to that root cause than to assume that it isn't. I am open to whatever diagnosis makes the most sense and, sadly, according to the pain management doctor, it is looking more and more like CRPS. There are a myriad number of different ways to treat CRPS, but most of them appear to be only marginally successful.
We will see if the neurologist comes up with anything radically different on Tuesday.
If clarifying what you said is starting a fight with you then you need to toughen up. Different opinions are what make a forum.
This guy is only looking for permission to leave his fiance.
But I thought the circumstance of "only" being engaged put an even more challenging perspective on the issue of moral responsibility and whether or not and to what degree it existed. I guess I was more right than I knew. I don't NEED anyone's permission to make a decision either way. But I suppose I was hoping for a little more nuanced reflection from folks on the central issue rather than redefining that issue as one of mere callousness.
But....I guess if that's how some people see it, that's what comes from putting yourself out there.
2. If you are feeling like you want out. Do it. Get her to a point of where she is ok. And move on. Don't live the rest of your life in regret and resentment.
Charlie states that she moved in with him and yet they own the condo together?
He brings up living with out sex and then gets offended by everyone that mentions it.
He says he can not talk to her about leaving while she is struggling with her health issues and then he says they revisit his helping until she gets over the hump.
I would be thinking about how soon this dude would be getting out of my house and life if this is what he is like.
Sorry Charlie no cigar for you.
She lived two hours from me when we met online and we pursued a "commuting courtship" for several months. After I proposed she moved in with me in my small two bedroom home. Too small. We bought a larger house together in the same community. I contributed the vast majority of the purchase price, but her name is on the sales contract. She has also made most of the painting and construction upgrade. She co-owns this home and will have equal say as to how we divide this asset. We had an extremely wonderful year together that included sex and even extended periods before now without sex for reasons that are no one's business. I get pissed off about people who "bring it up" because they have absolutely no problem assuming that the absence of sex is a major reason for my taking the action I am taking. It is not. The idea is nauseating. It is simply a non-issue.
Yes, I found it extremely difficult to talk to her about her or my leaving or selling the house and splitting the proceeds in the midst of her ordeal, but found a time when the medication was at peak effect. We had that single conversation and I referenced it in passing a day or so later in the context of the pain management doctor's preliminary diagnosis. I have no desire to keep throwing it up in HER face, so I talk about it HERE.
I'm still here because I love her AND because I realize I have SOME responsibility to her because of our love and the plans we had made together. I anticipate being here for at LEAST several more months -- basically until it is clear to me that she has come to grips with the idea that she is going to have to make this part of her life journey without me and that the systems are in place for her to do that.
The original philosophical question before the forum was, "Do I still have the MORAL RESPONSIBILITY to marry her simply because of the original proposal and irrespective of my inability to properly care for her?" Most folks here seem to be of the opinion that I do not and should not.
I have appreciated EVERYONE'S advice and comments, but if you wish to go elsewhere for fear of being manipulated by some psychopath who has nothing better to do with his time, then I wish you good travels.
How ironic that your id is "isthisreallyreal." It is a horrific question that Karen and I ask ourselves continuously. Or at least I do. I guess I cannot speak for her.
And glad that the therapy is going well, that the pain med doc is moving along and that the neuro got scheduled. Time will tell how this is going to go and I agree with the poster above about being active. Keep us updated and vent away any time!
About the pain. Has anyone discussed gabapentin or pregabalin? You use gabapentin cream so maybe you have and there is a reason she can’t use it. But oxycodone is NOT the right medication for nerve related pain. it depends very much on the individual how quickly they can become “addicted” to opiates. A good deal of the “addiction” is often psychological. I use quotes because addiction usually refers to the body’s physical dependence. My mother had chronic pain and used tramadol like sweeties. We tried and tried to get her to use them appropriately but she had a pain and it was the first one she reached for. I’m sure it shortened her life and decreased her quality of living. Once we managed to find alternatives and she stopped taking them it was much better. But she was very afraid of being in pain and needed something to use when it worsened. Eventually we got her to do things like drink a glass of water when she had a headache and give it 15 min. So the alternatives don’t necessarily have to be medications. Like the ice applications.
There is also capsaicin cream which might be worth trying. And the lidocaine patches. There is even a school of thought that lots of touching and stroking and hyper stimulating the painful area will reset the brain into accepting normal touch again without going into overdrive. Hopefully it isn’t complex regional pain syndrome. That is a difficult one. But try to be optimistic and don’t assume the worst. It wears you down! As far as being in too much pain to do her exercises goes, well you may have to leave that up to her. Maybe make her a chart and put stickers on it so she can get visual feed back about how many times she is doing them. It sounds childish but it works. You can’t do them for her. My mom had a knee replacement and was a right royal pain about it. Flat refused to stay in rehab and when the PT came to her home she would only do the exercise if he was standing over her. Bitched about the pain but wouldn’t do anything about it. I live overseas so once I went home there was nothing I could do about it. But she lived alone and was a determined woman so we told her to just get on with it. Her normal activities of daily living were what got her over it in the long run and she had beautiful function. So maybe try leaving her to do more for herself? It’s a balancing act because you don’t want her to fall or get hurt. But if she wants the house tidied before the paid help comes then let HER do it. It gets her up and about and moving so she regains muscular strength and it helps her psychologically to be moving and doing. The activity distracts her a bit from the pain because she has a target SHE has set. Don’t listen to the tears about how it increases her pain. If she is going to be obsessive about tidiness she will have to do it. Otherwise she will have to live according to your levels of acceptance of neatness. 😋
Good luck!
She is already on gabapentin in addition to the opioids and the pain management doctor wants us to gradually increase that dosage. I suppose pregabalin remains an option in addition to several others. I am truly fearful this IS CRPS, but in many respects it really does not matter. The time has now come to manage and plan for our separation in the midst of her efforts to recover. That separation is going to take place whether she recovers or not.
But Karen is all about the "power of positive thinking." And I don't think she has a good handle on when that mindset becomes merely "burying your head in the sand." Multitasking in terms of working, praying and focusing on the best while still planning for the worst is not something she readily accepts. She firmly believes that putting "negative thoughts" out into "the universe" actually increases the likelihood of their happening. And I told her just the other day that life isn't that simple. "If it was, this never would have happened. We certainly weren't fearful of a catastrophic outcome from a routine hip replacement. We barely gave it a thought. And look what happened."
It has been clear over the past year that we have several philosophical disconnects of this magnitude which has further caused me to question the wisdom of the union.
Thank you again for your compassionate support.
Charlie
Karen had first full PT session yesterday. Appeared to have gone well, although I saw very little. Had a good chat with therapist who wants her to ice the hip 3 to 5 times a day. The idea is that damaged nerves at the surgical site could cause the foot neuropathy. Therapist is not at all certain I will get much new information out of a neurological evaluation. In any event, that evaluation appears scheduled for next Tuesday. We'll see.
First meeting with new pain management doctor today. He very much wants her OFF opioids, as do Karen and I both. The question is HOW? I have no way of knowing whether or not she is addicted already. How would one know? Nobody is doing this to get HIGH. This is all in response to PAIN.
PMD has scheduled her for sympathetic nerve block on Monday, and has introduced a new possible diagnosis: Complex Regional Pain Syndrome (CRPS). This is another area I had briefly researched. Check this link from the Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/symptoms-causes/syc-20371151.
Karen clearly has five of the 10 symptoms. If it turns out she has CRPS this could be a very, very long painful haul. We have already had the conversation that I am NOT in this for the duration. She says she does not expect me to be. That may change once her eight siblings get involved and discover South Carolina still has "heart balm" laws surrounding broken engagements. These cases usually have very specific promises involved and often surround silly issues like who actually OWNS the engagement ring. Nonetheless, I will be proactively consulting an attorney versed in family law.
Today we revisited part of our earlier conversation about me helping her "get over the hump." I gently reminded her that as of the new information gleaned from the pain management doc today, we really have no idea where that hump is. But we are just over a month into this, and no hump appears to be in sight.
Charlie
Get your ducks in a row: Pain specialist, in-home assistance that she will pay for, legal advice on how to divest from the shared home, and the honesty to tell her you are not up to dealing with a sick fiance and you were viewing the relationship through rose-colored glasses. That's pretty much it. It's neither wrong nor right, it just is. She likely will be angry and not make it easy for you, but that's understandable. It's time to cut bait.
If you know you’re an enabler, seek out counseling now.
I read further down that she is the co-owner. She will have to either
1. Buy you out
2. Jointly agree to sell & get house on the market
3. Legal suit for “Partition”...forcing her to sell.
When my 80 year old granma fell and broke her hip in 1965 and had hip surgery, she assumed she was going to be bedridden (because that's what happened before 1965, when Medicare came into effect). She called all her friends rather excitedly and said "I'm going to be an invalid; my daughters will have to care for me". She sounded pretty jazzed about the prospect. (note that my grandmother was an extremely controlling person; a teacup that she had finished with had to be removed IMMEDIATELY; none of us ever lived up to her expectations for neatness, sad to say).
At the time, my mother had 3 kids, one a toddler of 2 years. My aunt worked full time. Who was going to wait on bedridden grandma was beyond me.
Mom said to grandma; "there is no one to care for you; you will go to rehab and learn to walk again with a walker and you will go back to your apartment in the Bronx. We will come visit and clean each week, but we cannot take on your full time care".
Grandma was astounded. And as mad as a wet hen. "How can you sene me to live amongst strangers?". "My how you've changed". "I'll never speak to you again". And so on.
Mom and aunt stood firm. Grandma got better. Life went on.
Don't discount the idea that some folks enjoy being waited on Charlie. Stand firm in the idea that you CANNOT do this all by yourself.
Since I can't respond to you directly where you posted, I wasn't thinking of a malpractice suit (that's up to Charlie and Karen), I was thinking of a revision surgery in which Karen wouldn't have any more pain.
If it were me, I would find a surgeon (after talking to many different surgeons) to do the revision surgery (I'm not that far from being 67) and I would not want to live the rest of my life in horrible pain.
(Taken from another article):
Revision surgery is more complicated:
In the majority of cases a revision procedure is more complex than the initial replacement surgery because your surgeon must remove the original implant and replace it with new components. This is made more complicated where there is infection, lack of adequate bone stock, or difficulty encountered in separating the implants from the bone. The surgery can also take considerably longer to perform when specialized techniques and equipment are required.
Revision hip replacement surgery further complicates recovery as surgical
trauma, scar tissue, and mechanical weakening of bone can reduce performance of the joint and hip area in general.
Recovery and outcomes:
Care after hip revision surgery is similar to the care you’d receive after total hip replacement. This includes a combination of light physical therapy and pain medications as needed. Blood thinning medication will also be given to prevent blood clots. A walker or crutches will be used early in your recovery period, then you’ll progress to a cane and eventually walking without any assistance as your condition improves.
More than 90% of patients who undergo revision procedures can expect good to excellent results. Although pain relief and increased stability are expected outcomes, occasionally complete pain relief and restoration of function is not always possible. However strength and mobility may continue to improve over the next one to two years after hip revision surgery.
Source: https://bonesmart.org/hip/hip-revision-surgery/?gclid=Cj0KCQjw3ZX4BRDmARIsAFYh7ZJmJJ5qapElvdlnw8j5KI8cpR7OLYTxacnPKswjNjaNb0IjZYmBY74aAkGvEALw_wcB
More information:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5884042/
I was musing about medical malpractice, not as a reply to you, but as a suggestion to Charlie. If Karen is going to be in chronic pain as the direct result of surgery and will need care for the rest of her life, there should be recourse. That's what medimal is all about.
(My one piece of advice would be to try acupuncture for her pain. It could work, and it does work with those meridians in the body, so perhaps that referred pain would respond to it. I'd pursue anything that might bring her some relief.)
I can understand not wanting to sign up for 20+ years of care taking, and I also understand that the painful memories from your mother's dementia are still lingering and coloring the present.
Before you step away from this relationship, I hope you would consider talking to a therapist about this situation. It might help you be more able see the present situation as separate from your past experience with your mother.
Of course in the end you'll have to make this difficult decision, but with so many issues weighing so heavily on you, having a supportive professional in your corner right now can only be to the positive.
Took care of my dad who had many chronic conditions. Now my mom. The only person left is my husband should something happen to him. Then, I’m done. No reason to marry anymore. Just another project waiting to happen.
I hope you are not her POA. Don’t be miserable for the time you have left to live. Write down your action plan and start chipping away at it bit by bit.
You mentioned that Karen's pain is being caused by Nerve Damage. Have you read this article by the Mayo Clinic? I cut and pasted it below. Very interesting.
As I suggested before, please bring Karen to a different doctor (if you have to, bring her to 10 different doctors) just to get their opinions. When I was married to my 2nd husband he developed Crohn's Disease and over 20 doctors wanted to operate and put a colostomy bag inside of him, I said NO. I kept bringing him to different doctors until we found a doctor who treated his Crohn's with medication which worked for him.
My point is that there are doctors and then there are better doctors. Don't settle and don't give up.
Article:
Mayo Clinic Study Finds Nerve Damage After Hip Surgery May Be Due to Inflammation:
ROCHESTER, Minn. — A recent Mayo Clinic Proceedings article links some nerve damage after hip surgery to inflammatory neuropathy. Historically, nerve damage from hip surgery has been attributed to mechanical factors caused by anesthesiologists or surgeons, such as positioning of the patient during surgery or direct surgical injury of the nerves.
In this study, researchers examined patients who developed inflammatory neuropathies, where the immune system attacks the nerves, leading to weakness and pain. Inflammatory neuropathies may be treated with immunotherapy.
“Neuropathy after surgery can significantly affect postsurgical outcomes,” says Nathan Staff, M.D., Ph.D., Mayo Clinic neurologist. “The good news is that if we’re able to identify patients experiencing postsurgical inflammatory neuropathy, rather than damage caused by a mechanical process, we may be able to provide treatment immediately to mitigate pain and improve overall outcomes.”
The study was a retrospective case series, including patients who developed pain and weakness in a limb after undergoing hip surgery where there was no documented direct or traction injury during surgery. Nerve biopsy demonstrated an inflammatory neuropathy in all patients.
Neuropathy refers to damage to the peripheral nerves in the limbs. Patients with neuropathy often experience numbness, tingling, pain and weakness that starts in their feet and moves upward. Neuropathy described in this study is isolated to the limb where the hip surgery occurred — often affecting the sciatic nerve that runs down the leg and controls strength and sensation.
Dr. Staff says it is important that physicians understand that nerve damage may be related to an inflammatory issue, and there are some telltale signs for physicians to look for:
Patient’s neuropathy isn’t immediate, but rather it develops over time:
Severe pain
Neuropathy progresses
Different anatomical distribution than expected
“We know new or worsened weakness after hip surgery can be attributed to surgical factors, such as stretching, compression, contusion, hematoma or even transection of the nerve. But now we know that this weakness may be attributed to an inflammatory issue, and it’s important that physicians look for this cause, too,” says Dr. Staff.
Study authors also include Ruple Laughlin, M.D., P.B. Dyck, M.D., James Watson, M.D., Robert Spinner, M.D., Kimberly Amrami, M.D., Rafael Sierra, M.D., and Robert Trousdale, M.D., all of Mayo Clinic.
Hope this helps,
Jenna
Is this a situation in which a medical malpractice suit is brought? Just thinking out loud.
Charlie; as I said in a previous post, good relationships are rooted in each partner being able to say "no" to the other. You CAN say "no, I"m not going to move the porta potty, it makes no sense to do that". You can say "I have things out of the home that require tending each day; let's figure out how much help we need to hire so that your needs are covered".
I think most of us understand that you are unwilling to watch your loved one in constant, chronic pain with no hope of relief. Having watched my mom's slow decline, a sudden acute issue made me hop up in down in frustration with my brother who had POA who was refusing to bring in hospice to get her the relief she needed. I only promised my mom ONE thing, and that was that she wouldn't die in pain. If I couldn't keep that promise, I wasn't going to stand around, helpless, and have her think i was betraying her. My brother realized I was going to walk away and he signed. Mom died, drifting on a morphine cloud three days later.
So, yes, we get that this is torture for you. But consider that if you get away for a bit each day, you will have more brain space to be compassionate and creative in your problem-solving and Karen may find a relief from the constant togetherness as well.
(((((hugs)))))))