FREE NEWSLETTER
Go to main Forum page »
As I’ve written here before, my mother-in-law has been dealing with Alzheimer’s, and this last year has been a constant learning curve of navigating long-term care policies, trying out in-home caregivers (pretty major fail), and finally a memory care residential facility.
Well, this past week was a new challenge. My MIL passed away suddenly on Tuesday night. We got a call from the memory care facility that she’d fainted several times, so they’d called an ambulance. We were concerned, but she’d had issues with fainting before. 20 minutes later, a hospital nurse called and said she’d arrested (she had an DNR order) and died on the way to the hospital. It was very abruptly conveyed, and the nurse barely took a breath before asking which local mortuary we’d like the body transferred to. We said we’d have to call her husband (my husband’s stepfather) and get back to them. It was a traumatic few minutes. Alzheimer’s notwithstanding, she’d otherwise been in good health and had never had heart problems. She was 84.
Anyway, the real drama involved the final arrangements. My in-laws had purchased cemetery plots in Palo Alto, CA, where other family members have been laid to rest. But they live in Southern California, some 400 miles from this cemetery. Nothing had been set up with a local mortuary. We had to really quickly find one that (a) would take the body from the hospital (b) prepare the body for a 400-mile road trip and (c) transport the body. Then we had to figure what would happen on the other end after the transport. My father-in-law also had to go to the local mortuary and fill out lots of paperwork as next-of-kin to get the body released. He’s 82 and gets easily confused and frustrated. My husband had offered to fly down to help (we also live 400 miles away), but we ended up on speakerphone talking him through the form while he was there. As you might imagine, this is all very expensive, too.
I think we’ve got it sorted for now, but holy cow. I guess he just thought having plots in a cemetery 400 miles away meant everything was all settled, but nope. Maybe we’re the last family to know that you need to make arrangements with a local funeral home, but—now we know. (And when he goes, he’ll have to be transported too, but at least now we know of a funeral home to work with.)
This was just way more complicated and stressful than it had to be, and we’ve already put “final arrangements” on our own to-do list.
I’m sorry for your loss and what you had to go through. One of the many things my mother did to make things easier for us after she died was to donate her body to the medical school that is located in the city where she lived (and that my father graduated from). The medical school paid for her cremation and returned her remains a little over a year after she died. Her one request was that we bury her ashes in a biodegradable container because she didn’t like the idea of her ashes being trapped inside a container for eternity.
I’ve recently gone through a death and burial of a loved one. Out of state or long distance arrangements are complicated and need to be thought through in advance. I would suggest a good document to lead a discussion with a loved one can be found at FiveWishes.org.
Very helpful, thanks!
Dana, thanks for this post, it was helpful. My condolences on the loss of your mother in law. Chris
Thanks, Chris.
My condolences on the death of your mother in law. May her memory be a blessing to you and your family.
Your post is so valuable, I will be adding “final arrangements” to my list.
Thank you
Thank you, and I’m glad you found the information helpful!
Sorry for the sudden loss of your mother in law, and the shock of the call from the nurse, asking you a question that I imagine often has no answer, yet, and then everyone’s scrambling to figure out the process of orchestrating final arrangements, something we as next-of-kin are required to do even if we know nothing about the death industry.
Not sure why your father-in-law had to go in person to the mortuary… and what paperwork was more than the minimum. Maybe I signed something at the hospital when my husband died? I honestly don’t remember much other than the nurse coming in and asking me where to send him. I just named a local funeral home and set up an appointment to go over the details with the director there in a day or two. Your 400-mile journey was a more difficult arrangement.
Somehow, when we did our end-of-days planning, with the advance directives and medical power of attorney, all that, nothing was mentioned that someone would immediately come in after death and ask us where to send the body. As you have experienced, a shocked and grieving family is not in a very good state of mind to be signing contracts and spending a lot of money on things they don’t know if they need or want, which is what happens on the first or second call and the first visit to a local mortuary.
(For the cost conscious… there are relatively inexpensive things that might be suitable and possible… if you even know they exist.)
FYI, some helpful info for California at https://cfb.ca.gov/consumer/index.shtml
Again, so sorry for your loss and the challenging days ahead.
To your question about the paperwork, he might have been able to do DocuSign or something if the mortuary had it available, but he’s 82 and not good with computer stuff. It was a lot of really specific questions (I assume for the death certificate), including where her father and mother were born, what their middle names were…it was a little weird, honestly. He also had to pick out a casket and bring in an outfit for her to be transported in.
And yes, the whole thing would have been much easier and less expensive if she were being cremated, but they’d already made their decision about that, and family members remember her specifically saying she didn’t want that, I take it for religious reasons(?).
When my husband and I did new wills, trust, and other directives last year, our estate attorney did ask us about specifying our final wishes, but we figured that was something that could wait. We’re still a bit stumped about if/when we should contract with a mortuary. The known unknown is that we’re not sure we’re going to live in our current town for the duration. But we could at least put into writing things like “please cremate me” and “you could play this song at my memorial service.”
I agree, it’s an improvement to start, even to say whether you want cremation or something else.
I admit, during our estate planning, my spouse signed off on cremation and I was a little hesitant and didn’t sign that form. And in the end, it actually was helpful that he’d written that because it was one more thing I didn’t have to think, “what would he/I/family prefer? what do I think is best?” I could just have him cremated.
So I guess I have to find that paper and sign it, so the kids aren’t stuck trying to decide that together. Same, I should just say, “bury my remains next to his” so that the kids don’t have to spend as much as ten minutes trying to figure out what’s next. That thought has me thinking I need to set up a joint account with the kids now and put enough in it for the “final arrangements” so they’ll have the cash to take care of it while my estate’s executor starts sorting out the accounts. I found the first few weeks after my husband died very stressful financially.
As Laura’s tale so poignantly notes, the people in this business get a lot of unscheduled calls. If you don’t know whether you’ll continue to live where you are now, there’s little reason to do any more than drop by or talk on the telephone with a couple of mortuaries/funeral directors in your area.(Friends who’ve been through this probably have really useful information too.) So you get a sense of what it would cost and what options are available.
Great point about having money readily available for the final expenses. My MIL’s upfront expenses with the mortuary were pretty considerable*, and if your kids didn’t have cash on hand or a credit card they could charge, it could be another stressor at a hard time.
*For example, transporting the body will cost around $2500, and that’s just for starters. I’m sure out the door it was between $5-10K.
I was very sorry to read how the sudden death of your MIL caught everyone so off guard at the end. SO stressful. I’m writing to add that even when someone is fading away more slowly, it’s amazing how much ambiguity and stress there can be at the end, if things aren’t discussed properly beforehand.
I’ve written previously here about my father dying in home hospice and preparations a family can make to make that process go as well as possible. One thing I didn’t touch on is what happened at the very end in my situation.
After his cancer diagnosis I had tried to talk to my father about what he wanted at the end, ie, did he want to be cremated or buried, what kind of service, etc, but he deflected all such questions. It was only when I flew in from another state to manage the home hospice situation at the very end that I learned he wanted to be moved to a right-to-die state to have some control over the manner and timing of his death, but it was too late for that. As I mentioned in my article, the visiting hospice nurses were nearly nonexistent, so I cobbled together a list of things I thought needed to be done and tried to delegate some of the many tasks to my siblings.
Since I was stuck at the house, running a mini-hospital operation, I asked my brother on his way home from work one evening to stop in at a local funeral home I’d found online to arrange with them how to handle taking away the body after death. On the Friday at the end of the long second week, when I went down the To Do list with my brother and asked how it had gone with the funeral home, he went quiet and then admitted that he had never found the time to stop by the place. I was aghast. “What if Dad dies over the weekend?” I asked. “Who will we call? What will we do?” My brother, deep in denial, said feebly, “Well, maybe he won’t die.”
It did indeed happen, on that Sunday night. Somehow, I was able to find the scrap of paper with the name and number of the funeral home I’d scribbled down. I called the place and gasped out an explanation of the situation and to my utter gratitude they rounded up some employees to come out to this house in the countryside, unscheduled and in the dark, to cope with the situation.
So like DrLefty and many others, I Iearned the hard way how important it is to have detailed end-of-life planning conversations with our relatives, no matter how reluctant everyone is to have such discussions. Also, how key it is to fill out the paperwork for your own final arrangements, right down to who to call and where you want to end up. And communicate it to others. These arrangements might change as your life situation changes over time, but it’s best to start with something today written out and shared now, that you can always amend tomorrow.
(Apologies for the length of this comment!)
Oh, gosh, Laura. I remember your article, but that’s a harrowing story at the end of an already difficult situation. Yeah, it’s definitely a wake-up call not to postpone making and communicating some decisions. I mean, you never know, right? (I have a severe food allergy and have “joked” for years that “one of these days, sesame is going to get me.” It’s not really funny, and—it actually could happen. Or something else could.)
Dana, I’m very sorry for your loss and the added stress. These challenging experience give us the chance to learn and grow, and your sharing helps all of us handle our future challenges. Thanks.
Thank you, Rick.
I’m interested that you mention that in-home care givers didn’t work out. I know some people planning to age in place consider that a viable option. Perhaps when things calm down you could write about what went wrong.
My father-in-law hired a local agency that had provided part-time caregivers for my husband’s grandfather in his final years, so it was already a known entity. They were very professional and a well established business, but here’s where the problems lay:
1) My mother-in-law had advanced Alzheimer’s. The caregivers weren’t necessarily trained to work with someone with severe dementia. (Her father was just old—he needed someone to come by and fix him lunch and do light housework and such.) The difference became apparent to me when she moved into memory care and the staff there were very calm and effective in working with the residents. My MIL was a sweet, kind, gentle person, but she had some screaming battles with a couple of the in-home caregivers who tried to boss around like a child. It was not a good situation.
2) Even with a good agency, and this one was, reliability and coverage will always be a problem. They had 3-4 different caregivers rotating in and out every week, which not only was too chaotic for my MIL to handle but also left them vulnerable if someone called in sick or had a family emergency of their own or quit.
3) It was really, and I mean REALLY expensive. This agency cost $35/hour. If he’d had in-home coverage 24/7, that would have been $25,000/month, and my MIL’s LTC policy covered about $5K of that. In contrast, the residential memory care facility was almost completely covered by the LTC payment (which was higher because it was a different category of care). My FIL has money, but few people can afford $20K/month out of pocket indefinitely. As it turned out, my MIL passed only three months after moving into memory care, but it could have been years. His original plan was to take care of her himself and just have part-time respite care a few days a week, but when he was hospitalized for three days with his own medical emergency, we all realized that this plan wouldn’t work—especially since none of us “kids” live close by.
I had NO idea how much MORE expensive it can be to have in-home care than residential care. I would have assumed the opposite.
Thanks for the information. Skilled nursing at my CCRC certainly isn’t cheap, but at least it’s right next door.
I cannot speak to any issues because my experience with in-home care over the past 30 years has been excellent.
We use a local family owned company with the son now in charge. They are now the largest caregiving organization in the area.
I suggest investigating agencies way before you need them. The better ones do their own training and have W-2 employees who have been with them for decades.
Get lots of references and throughly check them out.
Sorry to read about your MIL. The added stress of having to deal with the final arrangements must make it all that more difficult.
Thank you!
Wow, that was so much stress. I’m sorry about your MIL. Thanks for the warning, I know my plans are lacking in that area.
Ours, too, but it was a wake-up call. Thanks!
So sorry all this happened in this way. My wife’s parents moved here from Paso Robles 18 years ago. They had plots in Los Osos, with burial insurance. I don’t remember who was clued into knowing we needed local help–maybe because we are in small town and know the funeral home?–but we were ready when her Dad died. Later, when her brother moved here, we knew to have him pay for arrangements ahead of time, and it was a huge help.
Dana, I’m only writing this to underscore your post on the need for prior arrangements. I hope your family is able to regain your balance soon.
Part of it is that we were caught off-guard by how quickly and suddenly she passed. I think if she’d been fading away physically for a while, it would have occurred to us to be more prepared. Dying abruptly of cardiac arrest isn’t the typical progression for Alzheimer’s.
Very sorry to read this. Obviously stressful, and with no good feeling at the end of it all.
So sorry to hear about your mother-in-law’s death — and so sorry you had to deal with all of this. The past five days sound like they were super-stressful.
Thank you, Jonathan. Yeah, it’s been a week, and very rough on the family.