The resentment is running high

Hi, apologies for the late response, I didn't notice your reply till now.

To answer your questions, yes, we are not paying for (most) of our "globetrotting". My wife, although she is b=very ill, still finds the strength to head up a patient advocacy group (and assist with other organizations involved with this rare hereditary disease and other rare diseases. In this capacity she gets invited to participate in Pharma (mostly) funded conferences and working groups. It is extremely difficult for her to travel by herself, so I get to ride along as her caregiver (a role which I wouldn't say I particularly enjoy when you are dealing with someone who desperately wants to retain their independence but which I carry out cheerfully for the most part).

I would love some alone time, but as mentioned above, that is not a real possibility at this time

It is a key point Sister northstarmom makes - "who cares for the carer ?"

The role of "carer" can wear you down to a point where the quality of care you provide can suffer.
And what happens in a situation where the carer goes under a bus causing a sudden cessation of care ?

Who cares for you Brother catlover ?

Yes, it was from the Doctor. This disease attacks various organs and bodily functions. In her case her heart is pretty buggered, an ejection fraction (at last count) of about 18%, terrible neuropathy with the associated pain and muscle weakness, GI tract is also affected (Explosive diarrhea with little to no warning at times, and often inability to eat much, she has lost about 60lbs in weight, from about 150 to about 90 at the moment). A lot of the autonomic functions are also affected. In general, not a whole lot of fun.

It is a hereditary genetic mutation, her variant originated in Donegal, Ireland, where, co-incidentally, both of our families originated from. In my case, my father came from Rathmullan, Donegal, and her grandfather came from the same village. (and before anyone asks, yes we do share some genes according to 23andMe from a few genertions back LOL)

It took the best part of 5 years for her to get a diagnosis, all the while slowly deteriorating. At that time (in 2015) there were no treatments available, apart from trying to manage symptoms. At present there are a couple of medications approved for use (horrendously expensive, to the tune of about $500k per year, fortunately the Ontario Health Insurance does cover most of it), not a cure though, they are designed to slow the progression of the disease (or in an ideal world, halt  the progression) by stopping the production of the rogue proteins responsible for the mayhem. In her case, it would appear the medication she is on has slowed it down, hence, in my opinion, her exceeding the predictions of remaining time left.

FWIW my partner and I have discussed what we would do if the other became chronically ill and incapacitated.We both agree that if that happened, we would put the other in a good care home and we would visit and make sure they were well taken care of. We also would live our lives -- including having sex -- but would not tell the other the details of our sex lifes (Both of us agreed we wouldn't want to know).

We have a dear friend who did that with her husband. He was very well cared for. She still had an independent life including romance. She, however, and her husband hadn't made such an agreement, which is a reason why my partner and I have talked about that with each other.

We have another friend whose husband, after he retired, literally ate so much that he couldn't leave the house. He eventually was confined to his bed. His wife kept working (she enjoyed it) and went on trips with her women friends while he sat home hugging his support dog. She made sure he was well cared for but she didn't stop her outside activities because of him. I don't think she took a lover, but she did have fun times including 2 trips to Paris with women friends during the last 5 years. She didn't apologize for taking time for herself. Caregiving is difficult! Caregivers need self care.

Having an infirm spouse doesn't mean that you should have no life of your own even if you care for her at home. I remember trying to tell my mother that when she was taking care of my father after he had strokes and became incontinent and partially paralized. I even offered to help pay for care, but she refused. Incidentally, they were in a sexless marriage (father had had affairs and then my mom cut off the sex, affection, and love). She'd stayed married due to fear of the "embarrassment" a divorce would cause. Even as an adolescent I warned her that she was setting herself up to be his caregiver later (He also was 8 years older than her), but looking good to others was more important to her than was her future. I suspect that's also why she didn't travel after he had his strokes -- in her view, "How would that look to others?"

FWIW, by the time my dad died, my mom was so bitter, aged, and weary that she never did any of the fun things that she had planned to do in her senior years. She told me that every night, she prayed to die in her sleep.

You don't have to choose my mom's path.

Thanks for all the good thoughts. If anyone is interested, the link below is to a story about someone living with Amyloidosis, the same strain that my wife has. (Nicknamed Donegal Amy)

mm713.org/hereditary-ttr-t60a-variant/