Celebrating life at the end

Phones ringing at 1:00 in the morning never bring good news.

This weekend, our family experienced that 1 am phone call bringing news of the death of my husband’s mother. It wasn’t unexpected; in fact, it was a blessed relief for the entire family who had watched her growing increasingly weak and less responsive day by day over the past several weeks.

Early on, she would grasp our hands and say, “You know that I don’t want to linger. I just want to go quickly.” Initially we’d encourage her to hang on and fight, but, as time passed, it was clear that lingering wasn’t adding to the quality of her life. We begin to spend the time we could with her laughing whenever possible, talking about her many grandchildren and their adventures, and sharing life with her. Sometimes we’d simply sit and hold hands with her while we watched the news or one of her favorite shows together.

Until the last day, she’d usually grasp our hand with both of hers and hold on tight. Even when she couldn’t talk, she’d look in our eyes and communicate that she valued the time we spent with her.

On the last day, she no longer had the spark of life in her eyes, even though she continued to breath. She couldn’t speak; perhaps she could hear us and feel our touch, but we couldn’t see a sign of her spirit left in her body. We took our turns crying with her and each other; it was clear that we had lost her.

So when the phone call came, it was a blessed relief to know it was finally over for her physical body, too.

We were lucky to have all our children home this weekend. We had a chance to talk a bit about how we handle the death of loved ones, both personally and as a society. I instructed my eldest daughter to make sure I was cremated and put in a lime-green urn (she and I have a running joke about lime green being my favorite color), but mostly we talked about how right it is to mourn while at the same time recognizing that death is a part of each of our life journey.

My mother in law lived a good long life, just two weeks shy of her 91st birthday. This week as we gather with the large, close, extended family she left behind we will cry a little and laugh a lot as we remember – and celebrate – her life.

We need your stories!

Are you a family caregiver? We’re looking for family caregivers willing to share their stories of challenges – and rewards – of the caregiving experience.

How have you managed the shift in the relationship with the person in your care? Do you feel like you’re “parenting your parent”, or has the shift taken you to a different sort of relationship?

Have you reached that point in caregiving where you feel that this experience has joy and meaning for you – not just exhaustion and frustration?

What moments were the most emotionally challenging for you in this process? Was it the initial phone call alerting you that things were not right – or the moment when you had to face a challenging task like taking the car keys away?

What has helped give you the energy, support and courage to continue as a caregiver, even when it got really tough?

As we continue to build resources for caregivers it helps us to hear stories from real live caregivers. Please share your stories with me via email at Sharon@aquiretraining.com. Let me know if you’re willing to chat with me on the phone, too – sometimes that’s the best way to share stories.

Thanks in advance for sharing your stories. Your experiences may help others who are just starting out on this incredibly challenging, rewarding adventure.

Caregiver Guilt

Paula Spencer, senior editor at Caring.com wrote a great article on caregiver guilt titled “Aging and Caring: The secret guilt of caregivers” which I highly recommend both to caregivers and to professionals trying to better understand the challenges of family caregivers.

Paula points out that caregiver guilt closely mirrors what she calls “mom guilt.”

She’s so right, in my experience. Talking with families about leaving mom or dad off at their new retirement community or assisted living home, many report feeling like “leaving my kid at kindergarten or preschool the first day of school.” It’s a feeling of anxious uncertainty, wondering if you’ve made the right decision; if he/she will be OK; if the people in charge will do the right thing.

I believe strongly that becoming a family caregiver doesn’t mean we’re now parenting our parents; rather, we’re experiencing yet another role shift in our relationship as we have at various times throughout life. Still, the feelings of parenting seems pretty close to some of the guilt-feelings of caregiving. When your child (mom) is ill, should you just watch and see, or rush to the doctor? It always seems that whichever choice you make will inevitably be the wrong one…and more guilt rushes in.

Paula shares some great “rules of thumb” about handing guilt:

• You can’t ignore this pesky emotion, can’t will it away. Guilt simply is. So straight off, don’t think there’s anything bad or wrong about your feeling it.


• There’s good guilt and bad guilt. Good guilt is the kind that causes us to examine our behavior and make a change, if necessary. If you feel guilty because, say, you were impatient with a parent with dementia, it’s like a little poke reminding you to try a little harder next time because hey, patience really is a virtue. Unfortunately what eats most of us alive is bad guilt. Bad guilt has no constructive underbelly. Bad guilt makes you feel guilty about a situation that you can’t help (your parent has to move into rehab, for example) or that is actually a positive for you (you’re hiring home care because you can’t do it all yourself)


• Beware the oughts-shoulda-couldas. For caregivers, this refrain can sound like: “I ought to be able to handle this; I’m her daughter.” Or, “I shouldn’t feel so happy about going someplace without Dad.” Or, “I could have handled that better.” Things (and feelings) are what they are; stewing or denying wastes precious energy.


• Guilt creeps in when we discount ourselves. Ironically, selfless people tend to feel proportionately more guilt. Because they work so hard aspiring to an ideal way of doing things for others, they tend to ignore the inconvenient reality that they have to look after themselves all the more. They may even forget that they, too, deserve extras and shortcuts. Or, when they finally get around to (by choice or force) having a Calgon bath or lunching out with friends, it feels as alien as it does great. That’s a sign you probably need to follow your self care with more self care.


• Guilt loves high standards. News flash: Nobody’s perfect. No caregiver anticipates every fall or bedsore. Tempers boil. Germs sneak in. Bills slip through unpaid. Life happens, in other words, no matter how much you love the person or how much you feel you “owe” him or her. Aim to be a “B” caregiver instead of an A+ caregiver, and everybody’s going to be happier.


• No mom is an island. No caregiver, either. I think it’s no coincidence that most of the “happy guilt” that creeps into a caregiver’s mind follows having the load lightened by getting help. It’s such a persistent canard that it’s somehow a sign of weakness to ask for or find assistance, and from as many sources of help as you can locate or who will offer it.

When my kids were little I learned that, as a working mom with three little girls, guilt would be a part of my life. Somehow, just accepting that seems to make it a little less powerful, and maybe lets us get on with life and do what we need to do, in our very own personal style.

Family caregiving: when relationships add to the challenge

We’ve been discussing some of the most challenging aspects of family caregiving here among our team and we’re convinced that the relationship shift is probably right at the top.

Shifting from spouse and equal partners to care provider and recipient must be incredibly difficult. I know from my own experience that shifting from autonomous parent-adult child relationship to one where the parent is dependent on the child for care is challenging and disconcerting.

What about when one sibling sees the parent as smiling, happy and capable (the face she presents to them) while another sees a despondent, helpless elder (the face presented to sibling #2).

Then there’s the daughter that feels the need to resolve issues from childhood with a parent before it’s too late; issues that bring up long-buried feelings of anger, pain and helplessness.

I remember Emma who, suffering with advanced dementia, needed physical reassurance almost continually throughout the day. She’d hug us frequently, hold our hands and, in general, give and accept physical affection. I didn’t think much of it until one day her daughter came into my office and told me, “I don’t remember my mother ever hugging me as a child. She simply did not do that – ever.” It broke my heart to realize that this warm, loving woman had lived so many years of her life unable to give or receive affection from those closest to her.

As we’re working on creating materials to train and support family caregivers we’re curious: what’s the biggest relationship challenge you’ve experienced in caregiving? How did you resolve this challenge – how did it affect the caregiving experience?

Share your experiences with us, if you would. We’ll pass on what we’re learning.

Don’t parent your parents

Remember your teen years? Most of us cringe when we think of the relationship (or lack thereof) we had with our parents during those years. Some of us (not me, of course!) still have secrets from our folks about our adventures during those tumultuous years…secrets that, God willing, we’ll take to our graves!

So why would we want to revert to a relationship with our own parents that echoes those years? Why has our culture assumed that as our roles shift in our later years – as they do throughout life – we’re moving to a “role reversal?”

Our relationship with our parents is one of the strongest forces in our lives – from birth onward.

We’re 100% dependent on them for our survival in the first years of live. As we mature and naturally progress through the stages of life, our dependency grows less and less, until we’re fully independent adults.

Along the way, of course, the relationship is fraught with challenges. Not all parents are up to the task, either physically or emotionally. Relationships can be difficult or destructive instead of nurturing and loving.

Whether the parental relationship is one that is fundamentally healthy or not, many adults in their prime years are finding that the relationship shifts once again. From living independent, largely separate lives, they begin to become more closely intertwined as the child steps into caregiving or advising roles.

It is a shift in roles, but it isn’t time to start “parenting” your parents.

It’s a time to respect them as adults. Allow them to make their own decisions, even if those decisions are not what you’d prefer. To collaborate in making life-altering moves (like leaving a long time home and moving into a care environment) and decisions about care.

Certainly there are times when our parents are no longer able to make their own decisions because of cognitive declines, confusion or memory loss.

That brings yet another shift in the relationship – but one that still reflects the need to treat our parents as adults, not as children.

Adults with whom we have long relationships, often winding and complex.

Adults in whom we’re willing to invest time, energy and passion they move into the latter phases of their lives.

Finding our path to this shift in roles is often difficult. It might include false starts and a need, from time to time, to reconsider our fundamental values in the process.

Let me suggest these values: dignity (respecting privacy, decision-making and adulthood); autonomy (the right to make informed, independent decisions about one’s own life, health and circumstances); independence (as opposed to surrender of abilities and decisions); choice (the right to select what one wishes).

Clearly, when mental function is compromised by diseases such as Alzheimer’s, some of these values may shift. The value of safety takes precedence over nearly everything else, but we’re still shifting roles within the context of adults, not children.

I don’t know about you, but I’d pretty much do whatever it takes to avoid going back to a relationship with my parents that feels like adolescence – theirs or mine. I have no interest in reversing the roles (even though imposing a curfew on them might be a little bit fun)!

What I’m interested in is learning how we travel through this next phase of life together, strengthening the relationship we have developed over the years so that it is richer, fuller and even more rewarding to us all.