Now What?

The death of Mom's cousin's cousin has gotten me thinking about what comes next.  What does a caregiver do once their charge has passed.

When a person is a caregiver, much of their time and personal identity may be consumed by caring for that person.  I don't think that the age or diagnosis of the person being cared for matters in this case.  The caregiver may be a parent caring for a cancer-striken child or a husband caring for his wife with Alzheimer's.  In each example that I can think of, I see common themes.  The caregiver is trying to provide for the physical and emotional well-being of the other person.  The list of tasks that the caregiver picks up to allow the other person to function at the level they are capable can be quite extensive.  The caregiver may have to take over everything from cooking to bathing to... well, you name it.  In the case of a person being cared for, their tasks may just be to eat, sleep and hopefully get better.  If the person is terminal, as in the case of the Alzheimer's patient, there is no getting better and  the caregiver's tasks increase to the point where the only things they may not be doing for the patient is eating and sleeping.

Before the person passes, they may end up living out their remaining days in a nursing home where several people can tend to their failing body's needs.  The familial caregiver, such as the person's spouse, may be alleviated from many of the daily tasks and have some time returned to them.  However, many often continue to spend time with their loved one in the nursing home on a daily or weekly basis, continuing their commitment as a caregiver.

To simplify this a bit and use the example of Mom and Lyn:  Mom takes care of all of Lyn's appointments.  Mom has an increasing amount of hygiene issues to oversee for Lyn.  While Lyn's awake, if she's not at day hab, Mom oversees activities to keep Lyn engaged and entertained.  When Lyn goes to sleep, she doesn't wander, thankfully.  This allows Mom to get a full night's sleep which many caregivers are not able to get.  However, Lyn sleeps for 14 to 16 hours a day.  During that time, Mom's not really free to run errands, go on a date or do anything that would take her from the house.  There will come a time when Lyn won't even be able to attend day hab.

This level of intervention and commitment often leaves caregivers feeling a bit lost after their  loved one dies.  Not only are they contending with the grief of loosing someone, they're also facing a huge life change equivalent to a divorce and being fired simultaneously.  The caregiver faces a very real question of "Now what?"  How shall they spend their time?  Should they go back to work if they're not currently working?  Should they take a trip like they always wanted?  What about a class at the local college?  For some, even those big questions pale in comparison to just trying to figure out how to structure a single day when they are no longer living each hour according to the dictates of another person's schedule.  If the person needed to have medicine every 2 hours, if feeding the person took an hour thee times a day, the caregiver may need time to remember how those minutes can be spent when those tasks are no longer needed.

For some, the death may not leave the caregiver bereft or unsure of how to continue.  The caregiver may be mentally ready to be free of those responsibilities.  This was the case when my Grandmother passed.  She had spent the last three years of her life in a nursing home.  During that time, Mom visited several times each week.  Her siblings also visited quite regularly, weekly if I remember correctly.  When Grandma passed, Mom already had a trip planned to help me through the first couple of weeks of my own motherhood.

Today, we talk about future plans for Mom.  In broad terms, I know she has a plan and that she's looking forward to the future.  If she finds herself wondering "Now what?", she knows that's a common and normal reaction to such a major life change.  If she feels that, we'll help her through it.

If you know of a caregiver who is now faced with the life change of no longer being a caregiver, go easy on them.  They may need a little time to get their footing and reclaim their own identity.


  1. We went through this. Here's what I wrote on a blog a few months later:

    For me, losing my dad over a period of about ten years was an experience in waves of grief. You grieve every time they slip a bit more, even while you're consumed with and exhausted by their care. In my case, it also meant dramatically scaling back my business to allow me to spend a large part of every other month in another state as I helped with his physical care. For awhile, it seemed like this exhausting, expensive, emotionally draining process would last forever.

    So when he passed about seven months ago, it was surprising how sudden it felt and how quickly our routine changed. The very same day, there was no more need for his part-time caregiver - and she was just - GONE - after being a daily part of our lives for several years. My mom, who is aged but mentally and physically quite capable, didn't want or seem to need us checking in with her by phone every day. The quiet, physical freedom, and lack of ongoing stress seemed jarring for awhile. We were all relieved that he was no longer in pain, but we. were. exhausted.

    I never have felt overwhelmed by grief by his death. I believe we'll be together one day in heaven, so maybe that's why. But I am beginning to remember the fun, happy things about our life together and there is a lot of peace in knowing that the sacrifices I made to spend time with him and help in his care allowed me to let him go without reservation and to miss him without pain.

    My business has taken a financial hit, however. I'm beginning to feel I should be getting back my occupation, but my heart isn't in it like it was before his illness. I take that to mean that it's time to have a good look at where I am at this point in life and what I want going forward. It may mean I need to make some changes. But I think it also means that my grieving process probably isn't quite completed yet. So I think being patient with yourself and accepting whatever grieving process works for you is important.

    (end of quote)

    This is an area, I think, where it's easy to judge others and difficult to truly understand unless you've been through it. So we need to be patient, as well, with those who think they know what our grieving process should be... because everybody's grieving process is different.

    1. Thank you so much for sharing this, Sharon. It was beautifully said and a wonderful perspective.


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