Mourning Living Losses

Deb: Peaks and valleys are the best way to describe what my family has been going through lately. We are at that stage of life’s path where we are faced with the fork in the road. There are no signs pointing the way, no Lonely Planet guide giving us tips. We are hunting and gathering information and hoping to God that the right decision is arrived at.

My Mom’s foot has steadily improved and she is ready to be discharged from the hospital to further recover. But recover where?

The month-long stay in the hospital—between the trauma, drugs and the prone position—has produced both a pressure ulcer (bed sore) and a total loss of strength. She is now what they call “a two person transfer”. She can no longer transfer herself from bed to chair or chair to toilet. So of course the inevitable phrase “nursing home” reared its head. A blow to all of us and the specter of it has caused sleepless nights, tears, and endless circles of discussion. Add to that the sickening exposés on nursing homes on the front pages every day. The timing could not be worse.

My particular pain, which has itself developed like an internal pressure ulcer, has been in the unwanted job of holding Mom and Dad’s future in my hands. Honestly, I can deal with anything, but the agony of knowing I might make the wrong choice has been more than I can bear. I have spent endless hours researching and talking to our stellar team of support at St. Mike’s hospital who are working tirelessly to make this transition an easy and correct one. St. Michael's hospital is called Toronto’s Urban Angel and I could not agree more.

A few days ago I took my Dad home after a hospital visit. We had a particularly frank and painful discussion in the car and when I left him he said with tears in his eyes, “Debra, we trust you implicitly.” Any daughter would love to hear that but, while I was struck by the sentiment, I could not help wanting to run from this responsibility of trust. I spent the night thinking about this and how it was overwhelming me, and suddenly it hit me. I do not have the responsibility. I have chosen wrongly to own the responsibility. The only responsibility I have is to share with my savvy, very with-it parents, every single thought, every single option, every single fear. They deserve nothing less.

I realized, somewhat stunned, that this was just occurring to me. The simple fact is, we are all in this together. I was trying to do what I always do, trying to “handle it all”. I was putting this on myself.

The good/bad news in this scenario is that Mom and Dad’s bodies have betrayed them. Their minds have not. They can take all my information and offer good solid opinions. My job is to gather, shape, and offer it up. They do tend towards not wanting to cause me grief and stress, so I must keep it on track or they would just take the path of least resistance. I had this honest talk with them and Mom said, “Whatever happens, Deb, it will be because it is the best for us. This is a decision we will make together and it is not solely on your shoulders.” And a team was born.

It is still painful as we try to jump hurdles and dodge medical bullets. But I no longer feel I am falling down the rabbit hole. This past Friday we turned a corner. As soon as I identified the source of the pain, I think we all gained strength from the knowledge. The fact is, knowledge is power crept up on me again for the fiftieth time, bringing with it peace and purpose. How could I have missed that the agony was coming from mourning? We are mourning. And we have done it many times before. So why doesn’t it present itself to me each time with, “Hi, it’s me again, mourning.” But, like Dorothy, I seem to just have to learn it for myself over and over.  We have mourned before. We mourned Mom’s loss of independence when she had the stroke and we rose above it, turning her lack of independence into freedom. We have mourned these last few years as Dad has lost his independence and we continue to work towards good healthy solutions. And I look at them as my Dad takes Mom’s hand in the hospital as they say goodbye for the night. They are going strong, forging ahead. This generation continues to astound me with their strength and fortitude.

I guess the bitterest pill for all of us to swallow, is that we hold the secret of who they were. The care team, despite their best care and attention, see two old people at the end of their lives. The other day as an O.T. was giving me the results of my Mom’s cognitive test, I started to ball like a baby. The O.T. said, “I am so sorry. I didn’t mean to upset you. Do you want me to stop?” I said through sobs, “NO, I need this information! It’s just that, I wish you knew them, really knew who they were. You don’t and it’s breaking my heart.” My parents were the ones! They were the hosts, the entertainers! They were the centre of their circle. My Dad would cook like a pro and my Mom would dance the night away. They were the last to leave every single party! And it’s killing my soul that no one knows this. I wanted to scream, “Please, see this!” 

But I didn’t. It’s not their job. But I know it, and everyone who knows them knows it, and I guess that has to be enough.

The other day as we sat in Mom’s hospital room, my Mom said, “Jimmy, did you ever think we would end up this way”? To which Dad said, “No I didn’t, Anne”. I said, “Would you prefer the alternative? You have lost all your friends and you are still here.” As sobering as that comment was to digest, they sat for a moment and then smiled, knowing that despite all they are facing, they are happy as hell to be here. My parents love life in a way I wish every human creature did. They deeply mourn their lost family and friends but are in no hurry to join them, even at almost 85 years of age.

One of the Care Team experts, in an effort to assess how well I was doing as caregiver, asked me three questions. She said:

1. Are you feeling any resentment around taking all this on?

2. Are you feeling guilty?

3. Are you stressed?

And I answered.

1. I am not feeling resentment. I am so grateful that I have Mom and Dad and it is my great honour to care for them and about them.

2. I do not have any guilt. I have no reason for guilt and it is a waste of my time.

3. Hell, yeah, I’m stressed!

This week I would answer, “Hell, yeah, I’m stressed, but one tiny epiphany is melting it away, one crisis at a time.”

We will move forward together to make the rest of their life a party. Because as fate would have it, they are still the last to leave.

Barbara: Deb, I just want to thank you so much and from the bottom of my heart. I can’t tell you how, on the one hand, it’s hard to see you go through this and, of course, even harder to see your parents go through it, but on the other hand, your experience has also taught me an incredibly important thing or two.

My parents are all—knock on wood—healthy right now. But I know that can change in a flash. I find it interesting and important to remember that people—even those in medical crisis—are often capable of making, or being part of making, those critical decisions that will affect them the most. Of course, I also get that a lot of people can't––or won't––make good or useful decisions for themselves. But let's assume this is a case by case. If at all possible, they should not be outside that discussion. And we can't take on all the guilt and pressure that comes from making these hard choices. How brave and forthright of your mom to say it in so many words, that she takes responsibility for choosing whatever fork in the road you all travel down. And how lucky your parents are to have such a loving, faith-full Dorothy to hold their hands along the way.