There are no perfect families, and as the old saying goes; weddings and funerals either bring out the best or the worst in us! Words can hit harder than fists. In times of crisis, personal emotions often rule the day. Things are said that leave wounds for a lifetime. In this episode, Mitch Ware discusses family dynamics and how to avoid the big family blowup!
Hello and welcome to another episode of living with hospice. My name is Mitch Ware and it is my distinct pleasure to be your host today.
To be clear, I'm not a doctor, not a social worker. I'm not a licensed counselor. I'm not a nurse or a medically trained professional. I am, however, a very experienced hospice caregiver multiple times, and I am a longtime hospice volunteer. I've been involved with hospice for over 13 years. I've seen the inside of hospice, I've seen inside caregiving, and I think I have some tips and encouragement for you today. Before we get started, just as a side note, we've we've experienced an interesting spring here in Western Michigan, all up and down the state. It was a cold and wet spring, and then all of a sudden summer came and warmed everything else.
And all of the flowers and trees and everything open to once. Hence we have extremely high pollen counts. And you will probably hear a rasp in my voice today. Don't worry. I'm just one of many people that suffer from seasonal allergies. So please excuse my crazy voice today. So how do I take care of my loved one and keep peace in the family? What do I need to do to resolve the issues that our family just can't really agree on? And who's ultimately in charge? And who has the final say in this sort of thing? You know, there are very few perfect families. In fact, I really don't know of any Do you? Most are somewhat dysfunctional, and in my experience, they're all dysfunctional, one measure to another and when families have to deal with an experience like an end of life event,
Emotions run really high. And it can really bring out the absolute worst in people. In this episode, we're going to take a look at all of that. What's that old saying? That weddings and funerals bring out the worst behavior in a lot of families? I'm here to tell you that's true, especially from the dying and death part. I can't speak to the weddings, because our experience with weddings have been well, just terrific. But, you know, there's a, there's a lot of reasons for this. There's a natural, uneven sharing of the burden or yoking. At this time. You know, sometimes only one family members local, and they have to take this whole caregiving burden on and sometimes other family members stay away. Well, for lots of reasons, some are just afraid. Some just don't know how to handle it. Some are just totally
freaked out about death and dying. And the worst thing is when those who are not doing the day in day out caregiving,
they'll express their negative thoughts. Sometimes, you know how things are being done and when things are being done, and why don't I know about that. And this is terrible communication and blah, blah, blah, blah, blah.
Not to say that they aren't entitled to know what's going on or or be part of the decision making process because they are, but how they actually express their concerns in a negative way, where I was just sometimes downright judgmental and comes off bad. And this can lead to a showdown, which begs the question, just who is in charge here anyway? Well, we certainly have a lot to talk about in this episode. So let's kind of dig right in.
Your official hospice team, the team that comes from the hospice agency organization usually includes see a doctor, a nurse, a social worker, sometimes a separate counselor, a chaplain, if you are religious and request one. Let's see there's some home health aides that come and of course trained volunteers. They all work in concert together to meet you and your loved ones physical and emotional and spiritual needs. on your end. One person is chosen by the family or by circumstance like if you're the only person there to be the primary caregiver. Hospice counselors and chaplains and even nurses will meet with a family as a group when needed. But one person in the family needs to be the go to person so that hospice doesn't have to deal with several family members. Every time there's a concern or communication. Can you imagine if you had to as a hospice staffer or volunteer, you had to go through the entire family and try and get consensus every time? Well, that would just wouldn't work. That would be a total train wreck. So it's important that one person in the family be designated as the primary caregiver. And that person is the person who hospice will work through and who will contact hospice. So that hospice isn't getting bombarded with lots of calls from lots of different family members.
Okay, so as a primary caregiver, what do I do? Well, that role is spelled out in our living with hospice episode number nine. And the title is, I think something like I am now a caregiver help. That really goes through and explains every little thing you need to do. But for today, let's just look at who's in charge of the caregiving and how do we handle that responsibility, especially With all the Monday morning quarterbacking that that takes place from other family members and friends. As the primary caregiver, our very first responsibility is to the patient, your mom, your dad, your grandma, whomever you're taking care of.
That's your first responsibility. Your second responsibility, wait for it.
It's you, yourself. You need to be on your game, so that you can be the best caregiver you can possibly be day in and day out, then your family and friends are the next consideration.
So our priorities are our loved one that we're taking care of First and foremost, then you come second, because if you're out of sorts, you're not able to play. You need to be benched. The coach needs to put somebody else in and finally, Your family and friends.
I had a patient whose family was on pretty good terms with one another, they seemed real friendly. They were scattered all over the US and in to the five children were in the same state as the parents. And of those two, only one lived in the same town. The mother passed away of a heart attack quite a few years ago. And now dad, who's been living by himself and doing fairly well had some issues, some medical issues and is entering hospice with with cancer, I believe it was, and one son who lived in the same town to actually took him into his own home. And at first it was great for the sons kids, you know, having grandpa there every single day in the house and in the evenings and, in fact, it kind of reminded me of the night at myself here, the old Waltons TV show. I don't know that they went around the house saying good night, Jim, Bob. Good night, grandpa. Goodnight, mom in all of that, but it was really a cool living unit that that these this family had. Well, after a while when grandpa became more symptomatic, and he couldn't get around much anymore, and he had to stay in bed most of the time, his pain meds were increased in. Well, his ability to be coherent, pretty much diminished. Eventually, he was not able to be very responsive at all. And of course, it broke the heart of the family and broke the heart of the grandkids. But they were learning firsthand the process of living and dying. Now, the one sibling who lived out east would constantly call and want to visit with his dad. As his dad's condition worsened. He was no longer able to use a phone and an iPad type of device. This sibling became very frustrated and took it out on his brother. That was a primary caregiver. " Why didn't you Tell me he's gotten this better? Why haven't you done more to help Dad? You know, do you? Do you want money? Or do we need a better nurse? I mean, what what's going on? Let's, let's move on to another place that can take care of him better if you can't do the job."
My goodness there lots of hurtful comments there. And that's just a few. These conversations started flying back and forth, way too often as grandpa's condition began to really go south. So what do we do in a situation like this?
As I see it, you have three choices. You can say I'm sorry that you're displeased. I'm doing the very best I can, I promise you and just leave it at that. Or you can speak your mind and, and tell them off and hang up on them. Well, that might make you feel better for a minute, but it's not going to resolve anything and probably drive the wedge deeper between you two.
So I don't really recommend that.
What I do recommend is that you call the hospice social worker or counselor and ask for a group conference call. And that's inviting everybody around the country to join in. that technology is very common. Almost everybody uses it now. So it's not like something people are totally foreign to, and let the facilitator be the counselor or the therapist and let them flesh out the issues and let them the group come to resolution, a solution that works for everybody. Now remember, your goal is primary caregiver is to take care of your mom or your dad, whomever, then yourself, and then the family and I strongly recommend this conference call approach to problem resolution.
Let's let the hospice counselor be the person who helps your sibling self discover what a butthead they are. I know - That's not very kind. Let them self discover what their behavior is doing to the dynamics of the rest of the family and ultimately, to your mom or dad, whomever is the patient, because they pick up on all of this, they really, really do. Even if they're not responsive, they're still hearing, and they're still sensing. And this is not only upsetting you, but it's upsetting them. So who's in charge here, ultimately, the patient is in charge. However, in most cases, the patient's not able to assume those responsibilities. So someone else steps up. In most all cases, the primary caregiver is also the one who happens to be the power of attorney holder or the PRA in signs
All the hospice paperwork and other medical paperwork and probably has done so for a while. Now don't be confused. A primary caregiver can share duties in the like with other people, family members and whatnot. But they cannot share the authority or the responsibility given to them from hospice more often than not being a primary caregiver is well, it's not fair. There's not a fair distribution of tasks. Like as a primary caregiver, you're still going to be doing the majority of the bathing, the feeding the toileting, all of the dispensing of medication. Did I mention the mountain of laundry and you're the one that's sitting there in the wee hours in the morning, wiping your loved ones forehead with a damp cloth.
You are the one that looks into those eyes that are sometimes just very distant and yet sometimes they're...They're very present and they're looking straight into yours. And they're warming your heart like nothing else on earth has ever done. You're the one that listens to every breath, wondering if it's the last one.
So when you find yourself in conflict with others regarding your loved ones care, I strongly suggest a mediation of sorts with the hospice counselor getting involved and taking the lead. They'll find a workable solution and resolve whatever friction is going on in your family, as well as provide facts and information germane to your specific situation and do an education, if you will, of the whole family so that they have a better perspective of what's going on their words, your words, words hurt more than fists. A single terrible word can hurt more than good.
hit with a baseball bat. And it never heals.
The pain from words can last a lifetime. And in these types of situations and these hurtful comments, well, they just divide families, and they make life miserable for everyone. And well, it's just counterproductive. These comments often will fall on the ears of someone who's been caregiving night and day, giving everything they have. Night and day after night and day, day in, day out, week in, week out. In some cases, month in, month out.
And in all fairness, there's a sibling, a brother, sister, cousin, a best friend who's on the other side of the country, and cannot be there in person and beat themself up about it. They're feeling guilty the feeling horrible. The emotions run sky high.
on both ends of this situation, and sometimes the other side, doesn't know that their brother in the other end of the country is dying in their heart, they feel so badly that they can't be there. They're so caught up in caregiving that they can't see that.
And sometimes the brother on the other end of the country is so caught up in their own guilt and their own feelings, that they kind of lose track of what's really going on back home with mom or dad and in the caregiving that's going on there. I suggest that even though you as a primary caregiver, have the hammer, so to speak, you have the final say, with very few exceptions. There's no reason to swing that hammer that you have.
If you're the family member on the other side of the country, be gracious. And this is where this set of feelings can come out with
The mediator with the social worker on a conference call. Many times, people separated by distance in the middle of a crisis really can only think about themselves in in what's in front of them and what they feel inside with what's going on with them. And they don't appreciate what you're really going through on the other side of the country.
So rise above it. Get this conference call scheduled. Make sure everybody in the family is invited. This should be 100% transparent. Listen, don't create a situation that will leave wounds in your family, their hearts in your heart for a lifetime. Find the peace, find the love, even if you don't like your sibling or your other family member. Trust me. It's easier to forgive someone to find the middle ground to compromise and move on then
To carry that grudge those horrible feelings for a lifetime. As always, I appreciate sharing our time together. I really value your time. And I'm very grateful and thankful that you tuned in to this podcast today. I hope you found it helpful. I know there, there are no perfect families. And it seems like I said, like we said earlier, weddings and death and dying bring out either the best in us or the worst in us.
I hope with these tips today, that you'll find a way for it to bring out the best not only in you, but in your family and make this difficult journey more of a blessing than a curse. And I hope this will help you more readily navigate the sometimes ugly waters of family dynamics in times of crisis.
If you'd like more information, or if you'd like to hear more episodes about anything and everything, hospice
Go to www.livingwithhospice.info that's www.livingwithhospice.info and we would love to hear your feedback, your comments and your questions. And you can also go there and subscribe. Do it today and tell your friends and family about it. Until next time, this is Mitch Warefor living with hospice, have a blessed day.