When to consider hospice for your loved one

Intro & Lessons

Hello, I am Russ Krengel, CEO of Kindful Health, a hospice company. It's ironic that as we sit down to film this video, that it's June 23rd, which actually would have been my father's 89th birthday.

So, I keep saying that he keeps teaching me lessons even now that he's passed. One great lesson was having me go through the experience that my company provides. Another great lesson is hopefully, me sharing this experience with you.

Recognizing & Moving

I think, like most people, if you have parents that live out of town, the story really begins when you're noticing them struggle to be safe, and clean, and cared for.

In my case, the one that I remember is that my parents were living in a two-story house, and the garage was underneath. And in order to get groceries in the house, they could no longer get up the stairs. And so my dad started driving the car through the front yard parking at the front door, because they only had to manage two steps instead of 20.

These are the signs where families have conversations around what should we do next? Am I going to move myself in my family to where my parents live? Is my brother going to move? Is my sister going to move, or are we going to move our parents towards us?

In our case, since we had the youngest child, we felt the best idea was to have them move near us.

A Noticeable Decline

What we noticed about decline, for my parents, was that together, my mom lived for seven years, after the move and she passed away of a heart attack; never spent a night in the hospital. And for that, we're thankful.

And when they're together, with a little support from me, they could minimally manage, but some trigger things that occurred where we knew we needed more care was when my dad would go to the grocery store, and he had fallen so many times in the parking lot that the grocery store manager came out and spoke with my dad and said; you can't come here and get your groceries anymore unless you ride in a cart or have some other type of support.

So that's the point where we, as a family, decided to get my parents some assistance. So we hired a caregiver to help get groceries, prepare meals, socialization, do some shopping for my folks. And that helped for quite some time. After my mom passed my dad lived alone. We wanted to give him the independence and autonomy to try. We still had the caregiver, but it's a lot, right? Our caregiver did not get baths. And so my dad had to clean himself. And at some point in time, I remember going over to pick him up for a meal, and he came out to the car and he was not clean.

And so I said, dad, we can't go out like this. And he said, oh, just get back in the car, let's go. And I said, now we've really got to clean you up. And he goes, it's just so tiring and so hard, to do that. And so, you know, in a humbling moment for him and for me; I'm the son caring for my father like he cared for me when I was a baby. We got him clean. We went to lunch.

But we both realized in that moment we had hit a turn, and it was time for another solution.

Navigating a move from a home, especially if your parents were part of the greatest Generation and all the things that they accumulated is no small task. We brought in family, were able to downsize all the items, make sure they got to where they needed to be, and eventually moved my dad into an assisted living facility that was only a few miles away.

For that, we were grateful it would make it easy.

Matter of fact, my dad was a community where my mother-in-law was already living. So, that was wonderful. My dad successfully navigated the senior living for about 18 months before we showed major signs of decline. When I really thought about it, you don't see on every visit decline.

I'm having the same conversation. We're having a similar meal. But when I first used to pick them up, he could get on his walker and get into a car, and we could drive somewhere. Now, I could no longer do that. We could only roll his wheelchair through the parking lot and go to eat at a close restaurant. Literally, just driving the wheelchair all the way there.

Other notes of decline; he no longer could use his computer. And so he'd ask us, printed me out a bank statement, print me out this. Then he also, could no longer really manage his phone. He would say his phone was broken. I'd go over there and help him get organized.

He could no longer access the television channels he wanted to, and you get frustrated with these things. So there was more decline happening then that I think we gave it credit for.

Like you, I walked down the hallway and I know there's a director of nursing, but for the first time, this director of nursing pulled me aside and say, can we talk? I'm sure she's had the talk with hundreds of families, and I guess it was my turn. She shared with me that my dad had become a two person assist. That means he was consuming a lot of resources at the community. And lovingly she was less worried about that than she was that if we have a plan? A plan for the future.

Hospice Consideration

When you get to these points people tend not to bounce back, they continue to have further decline. And so what would be our plan? Well, in this case, she said, our plan should consider hospice. Little did she know, I actually ran a hospice company. So we talked about that.

But imagine that me, I'm running a hospice company and not recognizing the signs of decline that would be the appropriate time to refer a patient to get the full benefit of our care.

It was really, quite humbling. And then when we went through the paperwork; when we, signed up for services. When the care team of the nurse, the aid, the social worker and chaplain did their assessments, started providing care, I was taken back out of feeling

that I hadn't had in ten years. And that was a feeling of relief. A feeling that there's more than just me there to support my father. And it caught me off guard. It was powerful. And, I hope that everyone gets that feeling of relief sooner rather than later.

We start care and from the outside point of view, you think the most important person on the care team is going to be a nurse case manager because she's handling medications and whatnot. And in certain disease states that's going to be true. In my father's general decline there was only so much the nurse could do. What really shocked me was that what my dad really was suffering from, other than physical decline, was isolation, depression, loneliness. He's in a building with hundreds of people, people checking on every day, but still, these feelings are very real. So, the help of the chaplain, of sitting with my dad, listening to his stories, having lunch with them, the stories of our social worker that was able to make sure we were organized and prepared, the stories from our aid that would not only bath him, but also play cards with him. Right. Those were incredibly tangible and powerful benefits of the support that the hospice team provided.

A Change in Condition

So from his admission to hospice, he was fairly steady. A matter of fact, at some points we were thinking that he might have to be discharged from hospice, which is completely fine. One thing I shared with the team was that he was no longer able to use his computer, his phone, is television. So it was mapping some mental decline that you might not have seen physically. And then inevitably, there's a change in condition.

In my dad's case, it was very minor. He simply had a queasy stomach. The nurse came over, was able to provide him with some support and medication for his stomach, but he started having some other signs. He started sleeping more, eating less, and drinking less. My dad had always been a hearty eater. Our belief was this was just going to be a short time, right? He was going to get over his nausea and go back to being himself. Little did we know, this was truly the changing condition that was going to trigger the last part of his journey.

Calling Loved Ones

I knew it was time to call my brother and sister when my father was spending the most of his time in bed. It's hard to explain on the phone, especially when my out-of-town brother and sister had seen my father in the last 60 days be healthy—or a version of healthy, right, that he now is in bed. You could see his skin color changing. You could see his cheeks coming in. And so, I took a photo, shared it with my brother and sister. And the next day, my brother said he had booked a flight, and my sister said she was going to move up a trip to come visit. And I'm so grateful they did.

The one thing I want to share is that if you're having thoughts of whether you should visit a loved one or not. Let me encourage you to go do it.

When the Time is Near

When my brother and sister made it to town and we knew my dad's final moments were near. The expertise of the hospice team informed us that we had days, not weeks. A 50% chance of making it through the weekend. It was on a Friday evening that my sister made it and, the three of us, surrounded my dad's bed. The hospital bed was moved to the center of the room so we literally could surround him. And, we shared stories, shared laughs.

I fully believe my dad, knew we were there. And in that process, it gave us great closure.

My brother and sister kissed my dad on his, had shared that they loved him and let him know that the three of us were going to dinner. And that's when my dad's great joy is that his children enjoyed each other's company.

Six hours later, he passed.

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When the Time is Near

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Resources

Another interesting part of the journey was that my dad passed in the middle of the night, I received the call from the on-call nurse around two in the morning to let me know that my father had passed.

I went up to his apartment in the assisted living, and the nurse was there with the on-call nurse from the community, and together they handled everything. It gave me great peace and comfort to be able to leaf through memory, books and photos, while all the care of contacting the funeral home and taking care of the arrangements were handled.

I was able to be at peace knowing that I was supported. There was no confusion. There was no chaos. It was orderly and beautiful as they continued their service to our family. The chaplain checked in, the social worker. So you knew that you weren't going to be alone.

You weren't dropped off a cliff, right? You were going to continue to be buoyed by these beautiful people that support you through the care they provide in hospice.

Bereavement & Support

A week later our chaplain called us to see how we're doing. So, this is an ongoing support—we received a beautiful card from all the care team. And we look forward to the continued support of the bereavement services over the next year. It's really quite remarkable that you're not in it alone.

A Message for my Daughter

I have an 18-year-old daughter and if 30 years from now, when I'm 86, I've got my daughter is going through the same thing I would like to tell her, It's okay. It's going to be okay. Take advantage of your resources earlier rather than later. I hope I am a better patient than my father. I don't know if I will be. But you won't be in it alone. There'll be a hospice community there for you, to make sure that your grumpy old dad gets all the care he needs.