What Happens When the Caregiver Passes Before the Patient?

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Can you go on with your life after your loved one is gone? This is a question that all of us face when a loved one passes.

It's a bit different for a dementia patient. I could not go on if, God forbid, something were to happen to Phyllis June. Imagine the grief one goes through at the time of a loved one's passing, then try to imagine going through this as a patient. To put it bluntly, you can't unless you are a patient.

When this happens, the patient has to immediately rely on someone else. Who is that someone to be? We patients rely on our spouse, children, etc. to do so much for us that, when a spouse passes before the patient, it is utterly devastating.

For instance, consider finances. I haven't a clue who we owe, how much we owe, or what banks we make payments to. I haven't a clue when these payments are due, and even if I did, I would never remember to make these payments. I have no idea when our water payment is due, when our Direct TV bill is due, or when we pay for the newspaper to be delivered.

I wouldn't have the foggiest idea of how to get things in order for the end of the year taxes to done, nor would I even know what is needed to begin to deal with such things.

Many of you will think if you lose a spouse, making payments is the last thing you would be worried about, that things of this nature don’t matter at time like this. But, the bills keep coming, and everything has to be paid.

In most cases, this is simply an impossible task for a dementia patient to face, especially in addition to trying to deal with the realization that your spouse is gone. This is unimaginable to me.

I rely on my wife for everything. I haven't a clue how to get the tags on our vehicles renewed. I haven't a clue how to balance a checkbook. I haven't a clue what taxes we owe, insurance, or anything of that nature.

Again, most people would not even think about a lot of this, but, trust me, even after someone you love with all your heart passes, the rest of the world does not stop.

We talk about having a plan and then having another. How many of you have even thought of what would happen to your loved one who is suffering from dementia if, God forbid, you were suddenly killed in a car wreck or suffered a massive heart attack?

We need to think about things like this and, yes, have some course of action. For us, if I die, everything goes to Phyllis June, and vice versa if she should pass before me. Then our daughter is next if something should happen to the two of us together.

But what about the daily needs of the dementia patient when their caregiver dies? What happens? Who's going to take over? Can a patient like me stay alone?

I could stay by myself at this time. And that could last for several years yet, or that could change in a moment’s notice. It isn't like our daughter would have to be here daily to check on me.

However, like I said, you have to have things in place financially. Someone has to know your financial situation, what you owe, who you owe it to and on and on.

Many patients and caregivers don’t want anyone knowing the details of their personal finances, or what they have. So even bringing this up can be a huge issue.

No one wants to think about things like this, but it happens. Many times the caregiver passes before the patient. We all have heard stories of some caregivers passing from stress related problems like heart attacks.

This is not the time for secrecy. But, many of our parents come from a proud and private generation where it's just not any of your business how much money they have in the bank, what CDs they may have, who they owe, and so on.

Adult children of a dementia patient need to be brought up to speed as to what the plan is if Mom, who is healthy as a horse, suddenly drops dead from a heart attack.

What do you do with Dad now? Where will he go? Can he possibly stay by himself? Would some sort of home health nursing be appropriate? Would he allow this? Can he afford it?

And all of these questions will arise before the funeral arrangements are even made for the caregiver who just passed.

It has to be done. This is one of those things that you either do now, or take care of later under unbelievable stress.

Take the time. At least bring it up. One day this could be the most important discussion you have with your family, and you will look back and say you are so thankful you had it.

Rick Phelps became an advocate for dementia awareness after being diagnosed with Early Onset Alzheimer’s Disease in June of 2010, at the age of 57. He was forced into early retirement and created Memory People, an online dementia and memory impairment group which supports over 7,000 individuals, all touched in some way by dementia.

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9 Comments

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?
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.
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.