Episode 9: I am now a Caregiver - HELP!!
Updated: 4 days ago
In this episode, Mitch describes what a caregiver is, does, and gives tips on how to be the best caregiver ever!
"However, the time that you give to that person that you love can make all the difference in their world and yours as well as the hospice primary caregiver. You have to be a companion that they can rely on when it comes to every matter of life, including health, emotional, physical and personal matters."
Hello, and welcome to another episode of Living With Hospice. I'm your host, Mitch Ware and I'm a long term hospice volunteer as well as an experienced client of several hospices. I'm not a doctor, not a nurse, not a social worker, not a therapist. But I have years of firsthand experience with several hospice organizations. And I'm a certified and vetted volunteer.
Today we're going to take a look at "Whoa, me a caregiver help!! How do I take care of my loved one? How do I become a good caregiver? What do I need to do? What do I need to know?" Well, that's why we're doing this particular episode. I've seen the inside in the outside of this part of the journey and I have some tips and encouragement for you.
So you're now or about to be a hospice caregiver. You may be thinking.... "my loved one is entering hospice home care and I'm the primary caregiver. And well, I'm not really sure about this. I sell insurance or I'm an accountant or I work retail, or I work on a factory floor. What do I do? What do I know? I'm not a nurse. I don't have any special training. I don't know if I can do this."
Well, I'm going to give it to you straight.
In a nutshell.
This may be one of the most difficult things you've ever done in your life. And yet, I can assure you, it will be one of the most amazing and wonderful experiences of your life. Just keep in mind, you're NOT alone. Your hospice team is always there for you.
Let me say that one again, your hospice team is always there for you no matter what.
Okay, the first situation with your loved one, you know, it's a tough one. Someone you love is terminally ill, you've gotten that diagnosis. You've had some time to digest that to think about it. And now you've been told that it's time to move to palliative care.That change is hard to deal with in and of itself, emotionally, physically, spiritually, mentally, it's a tough transition going from curative care to palliative care.
Now, second, you're going to be the primary caregiver as required by hospice organizations. It's especially tough if your loved one was your caregiver like a parent or guardian. And now these roles have been reversed. That can be well, let's just say it's something that you have to get used to.
Let's be clear, no matter how much love there is between a caregiver and the individual they're taking care of, caregiving isn't an easy job. More than half of the caregivers say the role takes a toll on them like they never realized it would and not just physically! Like in their nine to five jobs, their private lives, their social lives. In general that more than 75% of caregivers say this takes a toll on our entire family, aunts, uncles, cousins, second cousins, and I might add friends, neighbors, folks at church folks at school.
And I can tell you that most every caregiver I've ever met has experienced anxiety or irritability stemming from these roles as primary caregiver. You see so much. You do so much. But you know, they also say it's the biggest blessing of their life. You wouldn't trade that experience for anything else in the world, nothing else in the world.
And during this caregiving journey, many caregivers experience Symptoms consistent with depression. Sometimes you feel overwhelmed, and many caregivers forget to take time for themselves. Ultimately what that leads up to is what we call caregiver burnout. And caregiver burnout is hard to predict because no two caregiving, people, their personalities or situations are the same. But if I had to bet my last ice cream cone of the summer on this, I would say if you're going to be a caregiver, you're probably going to have some personal episodes of feeling down. feeling overwhelmed and feeling depressed. I've witnessed this in many homes. I've I've seen it firsthand, and I have been hands on with this in my own personal experience.
Let's take a quick look at some of the things some of the tasks that we need to accomplish as caregivers. In my experience with my son, I had to assist with personal care. And as his disease progressed, that means I had to help him with bathing and grooming and dressing and toileting and exercise. Ever tried to hold a 205 pound man up in the shower, or even try to help someone get dressed that can't help themselves. It's not easy. I also had to prepare food, which not only meant cooking but grocery shopping as well. I did housekeeping, I did laundry, I ran errands. And so did my wife. Then there is general healthcare. That means you have to oversee medication and prescription usage. With hospice, it's imperative that you journal, all of those things, the dosage, the time of day, the meals, the snacks the toilet usage, everything has to be journaled.
In your case, your loved one may be somewhat mobile, and might need to only need help with exercise like maybe getting outside and jogging or fast walking, or maybe just taking a stroll. It is part of our responsibilities as caregivers to guide and encourage our loved ones through these forms of exercises. I also had to provide mobility assistance that's helping with getting my son out of the car, and in and out of a wheelchair. And as mentioned before, in and out of the shower, even though we had a shower chair, I still had to help him get in there and get into it, and then help him get out. I'm a strong guy, but many caregivers aren't that way.
So you may need to get some assistance from hospice. They have equipment that you They can make available to you at absolutely no cost to you. Or maybe there's a friend that can come in and, and help you with some of these tasks. My wife and I had to do some personal supervision with our son. That is, as Matt's condition progressed, we got to the point where he really needed us there pretty much 24 seven. We found ourselves providing companionship, and general supervision of routine daily activities. He had a stroke, his memory and motor functions were affected. And as you can imagine, that was pretty depressing, not only for him, but for us. So more than being a caregiver, we had to be reliable companions.
Some people set up a group of family members, or maybe a hospice companion visitor, who are wonderful, vetted, dedicated volunteers to come over and help with this. Think about it when you're down with a serious illness. We all need someone who can stay by us someone we can discuss and laugh with, really someone who we can share our deepest feelings with. Being able to talk about how they feel, is a really important part of comfort care. And that willingness to open up comes from trust. Trust comes with engagement. And sometimes that takes time. And that can be a challenge if you have lots to do at home or work, especially if you're raising a young family or you're starting a new job. However, the time that you give to that person that you love, can make all the difference in third world, and yours as well. As the hospice primary caregiver. You have to be a companion that they can rely on when it comes to every matter of life including health, emotional, physical and personal matters.
Some of the other duties of being a hospice caregiver are things like, well, we talked about transportation. And that means having reliable transportation, being able to drive to and from doctor appointments. And there's other activities and of course you have to run errands and you're also have to help getting your loved one in and out of the car as well as in and out of a wheelchair. And of course at the grocery store, they have those really cool motorized scooters. There's a rumor floating around that I may have been involved in a scooter racer to with my hot rod son, Matt, when when I was his caregiver!
Then there's there's emotional support. My wife and I encouraged Matt to talk about his feelings with us, as we mentioned earlier, we're people of faith and Matt became very close to our minister. They developed a very special friendship and bond. We needed to be this stable companion and supporter and he came alongside us and helped provide the spiritual guidance that not only map but we all need it.
Matt was 28 years old when he passed away. But let's take a minute and talk about care for the elderly. Someone who is infirmed makes some difference if they're 28 or 98. They still need a lot of the same types of caregiving. Most people in hospice, by the way, are older. As we age, we become forgetful. That is just par for the course as I'm finding out. Have you ever gone upstairs looking for something and you can't remember what it was? And then you go, well, was I going upstairs or downstairs? I mean, it happens to all of us. Some of us suffer from what's called dementia. And that's a physical life. Chemical activity in your brain. It's, it's there's something physically going on up there. And in fact, many elderly people suffer from dementia. Most are not officially diagnosed, but you can see it for yourself. And it's rather obvious in those folks, dealing with dementia can be a very daunting task. When your mom looks at you, and can't remember your name, or your father thinks that your your younger brother, or maybe a stranger, coming into his room to rob him or whatever, or when you're showing grandma photos of her grandkids, yet she can't remember any of them. It's hard. It's very, very hard, and you feel lost, and you feel defenseless, and you feel heartbroken. You can't fix this for them. Your first instinct is to say, Mom, I'm your daughter, Jan, don't you remember me? And then you cry. And unknowingly escalate the frustration that you both feel. Dementia is a huge topic that impacts all of us. And it's such a big topic that we're going to dedicate a whole episode to it. We may even bring in a special guest to discuss your questions and have a general discussion about what it is, how it occurs. How should we respond to it? How can we be the best caregivers that we can be so that our loved one can have the best life that they can possibly have? By the way, you can send us questions about that or anything else hospice related at firstname.lastname@example.org. When you send us your questions or comments in the email provided. We might just discuss your comment or question In a future episode.
At any rate, as caregivers, especially for someone older, you'll probably deal with someone who because of dementia, or just being forgetful, they forget what you just told them. And that can be a challenge for you. Believe me, I was so challenged with that with my mom, we had to learn how to manage that frustration that we felt. Another role of caregiver is the role of being the conduit for information, a mediator of sorts, you meet with the medical team and you share the family's concerns and questions with them. And conversely, you share the info from the medical team with the rest of your family.
Now, this next one is really pretty obvious but as a caregiver, you will need to be the underlying health monitor. That means making sure we're following the care plan that was laid out by the hospice doctors now And counselors. And you need to notice or denote any changes that you've noticed in the individuals record. And make sure you report any of those differences to the team during the regular visits to the home or if need be. If something isn't right, you may need to call the office to report something is really out of whack and have an urgent nature. Another option is hiring a homecare assistant. And I've had several experiences with that with patients that I visited. First, if you're the primary caregiver relative to your hospice relationship, you can get a homecare assistant to act as your proxy while you're not there. You're still responsible, but a trained person can come in and take over in your absence. Listen, hired homecare is an excellent option for families who do not have 24 seven availability Now when considering homecare assistance, make sure to screen people carefully. only hire someone who has been thoroughly vetted. Someone who has a proven track record, someone who can give you references. Just because they come from an employment company doesn't mean that they're what you are looking for. It certainly doesn't mean it's somebody you should trust. Make sure to personally interview that person. And make sure that the person you interview is a person that gets assigned to you make it clear to them. All the tasks that they're to complete are right here on this list and make out a very thorough list, not only for direct patient care, but for the other things like keeping records of medications, meals, toileting, those kinds of things. And don't worry about inundating the homecare worker, thinking well, golly, they probably don't have to do this in other places. Is that they've worked at Yes, they probably have, especially if the person has been in hospice, they'll know the routine, and they will fit right in with your system. Now, this may seem extreme, but I would have a small camera in the patient's room where I can see for myself what's going on when I'm not there. These are handy for when you're in another part of the house. Or you can instantly check in on your loved one using your smartphone. If you have someone else who's pitch hitting for you as the caregiver at that time, be a proactive in smart caregiver.
I know more than a few people that think this caregiving is their penance that they have to pay for being less than a perfect child. Honest to goodness, I could name your half dozen right off the top of my head. There is no room for a martyr in healthy, effective caregivers.
Let me say that again.
There's no room for a martyr in healthy, effective caregiving. And I have yet to see someone who comes out of this without regret someone that who has murdered themselves usually comes out the other side, the worst for it. If you don't hear anything else I say today, hear this. You cannot be an effective caregiver. If you don't take care of yourself.
Let me say it again. You cannot be an effective caregiver. If you don't take care of yourself.
I'm sure that anyone listening to this can do all the little tasks that need to be done as a caregiver. And I really mean that. If you want your loved one, though, to have the best rest of their life that they can. You have to take care of yourself so that you can be the best caregiver you that you possibly can. You're going to have times where you're physically, emotionally spirit Truly, mentally, totally worn out. And that's okay. That's common that happens to all of us, we're human. One way to help yourself is to have an accountability buddy. Ask someone that you're close to maybe a close friend or, or a colleague, somebody that you trust, to be your barometer, have them tell you when you're getting burned out. And when you're at the point, well, you're being less than effective and you're someone that nobody wants to be around. Remember, you're going into this 25th hour period, and I call it the 25th hour fog, we all enter the fog when we get the news of our loved ones terminal illness, and it doesn't go away when they enter hospice. It clears somewhat, but it's still there and we have to manage through it.
That's why we need others. We have to be able to rely and lean on others. I know that being inside the fog, Sometimes you don't even realize you're there. And it takes the intervention of someone else to say, Hey, you know what? You look worn out, let me stay this afternoon and you go sleep, or you go golf, or you go to the spa, or you go have some quiet time, whatever. Get someone in your life that can help be your barometer, and then listen to them. You've empowered them with this authority over you listen to what they say and take their advice. Again, we're going to cover this I think in more detail in an upcoming episode.
By now we know caregivers do a lot of things. But one of the most important things that we can do as caregivers is to be present. That means sometimes not having to say anything, just just being there with them. Actions speak louder than words. You can say I care or I love you. With a simple smile or by just holding someone's hand or wiping their brow or sitting by them while they doze, there's a special blessing for those who elect to be caregivers, caregivers take the struggle out of everyday routine for folks that are in a hospice journey, you're eliminating challenges and boosting independence. While it's not an easy job. Most people say being a support system for their loved one is one of the most rewarding experiences of a lifetime, the companionship, the feeling of being needed and wanted and the love between you and your loved ones. help keep us happy. It makes the entire process that we're talking about here today. more comfortable for everyone, not only the patient, but other family members too. Like in my own experience with my mom, my siblings knowing that that mom was in good hands with My sister, or with me or with folks that we trusted.
Let me share a little story with you. When our son got diagnosed with terminal brain cancer, we - my wife and I - decided that we were going to do whatever we could to help him. We would move heaven and earth, if we could to make his life more comfortable. And of course, that included being his primary caregiver. And of course, it did come to all the things that we talked about earlier in this episode. And I can tell you, that being his primary caregiver was the very best decision I could have ever made. He was comfortable around me, I was comfortable around him. My wife and I and our children and our relatives and friends had quality time together. It was amazing the quality times that we had in Little things like when we go to treatment then afterwards because we were over In Detroit, on the other side of the state, we would go catch a ball game. Or we go to a restaurant where we could get these buffalo burgers. And the the discussions that we had, there's nothing like it on Earth, nothing could possibly replace those conversations. And in the normal course of life, that probably would not have happened. I know it wouldn't have happened to that extent. Not at all. If we weren't on this hospice journey.
We all know people who did not rise up to meet the challenge. And now they carry a huge regret around for the rest of their lives. If you find yourself in the role of a caregiver now with someone who is in their 11th hour, don't run from it, run to it.
Remember to take care of yourself.
Remember to have an accountability buddy.
Remember to find time to just be present, to be there with that person. To engage with them, and I promise you, this will be one of the most rewarding experiences of your entire life.
Our next episode, we're going to take a look at sharing music on this journey. You're not gonna want to miss that one. I've got some pretty interesting stories to share with you. As always, thanks for spending your time with me today. If you'd like to share a comment or a question about this podcast, please drop us a note at email@example.com Next time we'll have the whole gang with us. I'm sure Chloe will be here, Charlie, the the neighborhood Mayor will be here. And of course Cosmo Kramer, the silly dog. Until then, this is Mitch Ware saying Have a blessed day.