Oh dear, Rick -- I'm so, so sorry. I hope that as you get through this terrible time you'll be able to keep us posted. For one thing...it's a situation that could happen to any of us. As a caretaker (age 73) I'm well aware that I could die before my 93-year-old husband -- the trials of the whole thing are so exhausting. In the last 6 months I feel as though I got 15 years older. In fact I'm going to our doc tomorrow to ask him about the various problems (dizziness, pounding heart, aching calves, nausea every day) that I have developed in this period -- I went from very healthy to a wreck in 6 months. I know it must have been horribly painful for you, given your sensitive character, to be with your wife as she headed toward the end, and now it is horrible to be without her and also to try to construct a new care situation. My hugs to you and all your family. Please let us know about anything you discover as you go through this. Many of us (like me and also my husband) are terrified of this "unexpected" situation, which turns out to be much more likely that any of us would have thought. In my husband's case, he's in a nice assisted living place now (entered a month ago), but if I die, he will be left to his sons, who are distant and constantly proclaim their love for him (and their contempt for me), and he's realistically terrified that they won't let him continue in his nice new home. They both live at a distance and while they are both QUITE wealthy, neither of us can imagine them shelling out up to $100,000 a year (more if his level of care intensifies) to allow him to stay in the town he loves, with people he is already forming a community with.
Again, all my sympathies for you, Rick.

The thought of passing before my husband, who had ALS, terrified me. I bought a term life insurance policy that could pay for full-time caregiving and created a book with all instructions (and photos) of his daily care routine, medicine/pharmacy list, medical team info, etc. Everything was in writing, including all accounts, account numbers & passwords. I know our sons thought this excessive, but had they needed it, I know they would’ve been grateful. He has since passed and now I have my 93-year-old mother with Parkinson’s & PD dementia with me. I no longer have life insurance, but have created another “care book.” It brings me peace of mind knowing anyone could step in without any change to her routine.

There is just my twin sis and me. No other family. I have been and am her caregiver. Finally several years ago retained services of a senior care agency for sis health care, where will she live, etc., and have them on retainer ($50/mo./). Retained services of an accountant for finances, bills, etc. Don't have to pay her retainer. We have Wills, POA's health/finance, Trust for sis, Living Wills, elder care attorney will be Executor of my estate. I have typed instructions, details of sis's care, info on all providers of services (cable, cell phone, etc.) including account numbers, date payment is made. Have all my financial/bank info typed out. Everything everyone needs to know is typed out, has been given to the caregivers, is updated immediately as needed. It"0's a lit of work but it gives me peace of mind although I trust God to either take Leah before me or, best case scenario, take us together. Good luck to one and all and God bless. Hugs. 💖💓

I worry about this with my parents, except they have my brother there also, who actually does 80% of the caretaking for both of them. Mom and brother take care of dad, who has polymyositis and has low to no mobility now, but his mind is intact. He does all the bills and remembering of everything. Mom is having acute memory loss that is worse than I realized, but it's hard to suss out what's simple dementia from what has been her spaciness all her life: she let dad handle all the practicalities of life, even though she was the primary breadwinner (both retired now). Anyway, dad will definitely go first, and if my brother weren't there, my mom would absolutely have no idea of what to do with any bills. I can tell my dad is stressed. He starts trying to tell her what's what but she tells him: "it's no use, I'll just forget." I wonder, are there professional people who can be in charge of bill paying for someone if there is no immediate family close by? I guess a personal accountant? How does one make sure to choose a trustworthy stranger to handle your money? I wonder about this also for myself because I have no kids and am single, so when these times come to me, I'll need to rely on professional help, not close family.

I am the sole caregiver to my husband. He could not handle a thing on his own. I have an older brother( in his mid 80's) and a nephew that says he would help, but he lives in N.J. We live in Ma. I can do all the "business" yet, but if I can't my only back-up is pretty far away with a family, a job and a busy life. All I can do is make plans and hope for the best.

My mother was the caregiver to my grandma. She and I took turns but she was the primary caregiver. She passed away in January but mom had set it up with POA so that if she refused or couldnt do the POA, I was the new POA and health care advocate. It puts me in charge. She didn't like to do that as she was upset and wanted grandma to be placed in a home instead of me giving up my life to care for her but it's how it has worked out so far. I have taken over paying the bills, fixing up her life insurance to be paid to me so that I can make sure she gets a proper burial and keeping up with her medicare, AARP and Allied Health Care. It's not easy. If I died before grandma, I am not sure what would happen as my sister would not take over care and the other cousins of mine are too busy in their own lives to worry about grandma. Since I'm 37, I hope to outlive by ten folds so I eventually have my own life.

dhisland, I was thinking the same thing for myself, I have no siblings, nor do I have any children. I would need to hire people to do this work for me.

The article makes perfect sense. But what do folks do if neither of them have any family? Due to an illness I have, if my husband died I would not be able to manage any of the financial issues mentioned here, and would have no one to assist me. All of our financial dealings are done online by him and I am no longer able to learn new things so I'd be at a total loss. Any suggestions?

Mr. Phelps, very timely article as I am dealing with that this past month with my Dad [94] as my Mom fell, is in long term care, and can no longer take care of all the bills, prescriptions, car registration updates, flu shots, groceries, etc.

When I took over the task of trying to deal with this bookkeeping, I was glad to see that my parents were now using automatic payment for many of their routine bills.... whew. I am trying to get a grasp on all of this as I dig through piles of paper on my Dad's desk only to find another out-of-date bill. Dad was more than happy when I took over this task. I hate balancing check books as I always find I am off by a couple of dollars and cents, and darn it, I want to find where I made that mistake even if it takes me all night :P

Dad is thinking it is time to go into Assisted Living. That would eliminate a vast majority of the bills.

T he article was very insightful, but we need to go one step further. what happens when the spouse that dies is the only caregiver?

Being Hubby and I are a blended family, I've already have one of my children as my executer. So, he will be able to help my Husband's children if I pass before him. Yes, pls do get another family member involved if you can right down to computer codes and where important files are. Also, make sure family member knows all meds and ways Patient does his/her living --- like clothing, bathing. Discuss with Patient what will happen to him/her if caregiver dies before. You'd be surprised at what sometimes Dementia patients can remember with a bit of coaxing.
Hope I make sense. Hard to answer this one.

I'm the caregiving spouse. My husband had a stroke in late November 2011 that has left him cognitively OK but physically disabled. I'm his health care proxy and durable power of attorney. He had been the beneficiary on my 401k and I'd been beneficiary on his, but I have since put all our combined retirement funds into a Special Needs Trust intended to benefit him on my death. I've designated a power of attorney and health care proxy, both of whom are known, trusted and skilled in patient advocacy, for both of us. We've also both written Advanced Directives and have created a MOLST for my husband (Massachusetts Medical Orders for Life Sustaining Treatment). It's shorter and more succinct than an Advanced Directive and apparently has more medical standing when it comes time to make critical decisions. Hope this is useful.