Hope for living, loving, and caring with no regrets!
Rayna Neises, ACC, host, reflects on her interview last week with Betsy Wurzel Sloan who was a caregiver for her husband who had Early Onset Alzheimer’s. Betsy shared her experiences with her caregiving journey and explained that she gave herself permission to have Pity Parties. She also talked about the dying process. Rayna shares more on both important subjects:
- [1:30] Pity Parties are helpful and provide the opportunity to vent your feelings.
- [2:18] Self-Pity can lead to Self-Compassion.
- [3:40] There are many euphemisms for death and dying.
- [6:34] When you hear some of the key phrases, ask for an explanation and more questions.
- [7:15] The process of dying happens over an extended period.
- [11:25] One to three months before death, there are both emotional and physical changes.
- [12:37] One to two weeks before, things move faster.
- [13:37] Hospice can offer comfort through the dying process with medications for air hunger, pain, and anxiety.
- [15:42] Many physical changes happen in the final weeks of life.
- [17:20] Join the simple 5-Day Challenge to help you consider your self-care (September 19th – 24th). Sign up at aseasonofcaring.com/selfcarechallenge
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*Transcript is an actual recount of the live conversation
Rayna Neises: [00:00:00] Throwing yourself a pity party offers the chance to express frustration and pain and begin letting them go. Leaving you ready to explore more productive solutions? That’s a quote by Krystal Raypole. Welcome to A Season of Caring Podcast where there’s hope for living loving and caring with no regrets. This is Rayna Neises as your host. Thank you for joining me today. Last time I interviewed Betsy Wurzel Sloan about her caregiving season in caring for her husband who had Early Onset Alzheimer’s . There were a couple of things that really stood out to me in her interview.
And I wanted to take an opportunity to talk with you about those. The first one was it’s okay to have a pity party. I love that, cuz I do think it’s so important and I found some really interesting information. I wanna share with you about pity parties or venting as they called it. The second one was I feel that everyone should learn [00:01:00] more about the dying process.
Whew, heavy subject, but we’re gonna jump on it today, cuz I do think it’s so important to share more about the dying process.
So let’s start out with pity parties who doesn’t love a pity party, right? It can be really helpful to have a pity party. And I found an interesting article on Psych Central. That actually says that pity parties can be really helpful and they describe a pity party as the opportunity to vent your feelings.
And I do think that those negative feelings we oftentimes just want to ignore and not even acknowledge that we have. So venting can really ease your distress. It can help you to acknowledge the feelings and start to process through those feelings, especially when you’re venting to someone who can help you do that.
It can offer you deeper insight, taking the opportunity to let those feelings, emotions take shape into words, and really begin the [00:02:00] process of understanding what you are feeling. Instead of avoiding those negative feelings it helps you to go a little deeper and maybe find the root of those feeling.
Another point that they make in this article is self pity, can open the door to self-compassion and I think that’s so true because our family caregivers are oftentimes so hard on themselves. You can be a perfectionist. I can be too. Understanding that embracing that pity party can help us to have a little more compassion as well for ourselves.
The next time you’re feeling, sorry for yourself then I want you to think about if a friend had come to you with those same concerns, what would you do? How would you encourage them? How would you feel about it? Would you think that they were just being dramatic or would they, would you actually [00:03:00] have compassion for their situation? So, just even realizing, wow, you really are dealing with a lot right now and that it’s okay to have these feelings.
So that’s the easy subject, the pity party. Now let’s move to the more difficult subject talking about death and the process of death.
As a society, we are not comfortable talking about death or dying, and we have all kinds of ways to avoid even using those words. One of the most common ones, we would all know what it means, but we really wouldn’t say it to someone to offer support or comfort. But when someone kicks the bucket, right, there are tons of euphemisms around death and dying. A person passed on. They passed away. They’re resting in peace. Or they went to their eternal rest. They’re deceased, they’ve departed, they’re lost. They lost their battle. They lost their life. All of these are different euphemisms that we use in talking about death and [00:04:00] dying even took her last breath, went to be with the Lord or went to heaven, met his maker.
Rayna Neises (2): I talk frequently about walking our loved one all the way home. These are all euphemisms and I think they’re okay, but it is interesting to think about how many different ways we have to talk about death and never say the word. The part that I thought was really interesting is as I was reading about euphemisms for death and dying, I ran across an article on very wellhealth.com.
And in this article, they talked about some of the euphemisms that are used in the medical profession, by physicians, nurses, and other healthcare practitioners. And these might be euphemisms you didn’t even realize we’re having to do with the dying process. Not doing very well. Declining. Failing to respond. [00:05:00] Might have to consider comfort care. Seriously ill. Isn’t going to make it, treatment is futile. Some get progressively more descriptive ones that I would say, oh yeah, I understand that. But thinking about a physician saying to you, they’re not doing very well. That wouldn’t make me think that they were dying.
so I think it’s really important to realize that these are euphemisms, that they use in the medical profession. And this article gave an example of two different scenarios and the words that they might use so that you can actually pick up on what they’re trying to communicate with you.
The doctor states, I’m sorry to tell you this, but John, isn’t doing very well. We would like to make sure he’s comfortable by giving him this medication. Is that okay with you? I would not think that they were at the end of their life. If that’s what the doctor said.
The second scenario is a lot more clear. [00:06:00] I’m sorry to tell you this, but John, isn’t doing very well. In fact, he’s showing medical signs that he’s likely to die in the next few days. We would like to make sure he’s comfortable by giving him this medication. Is that okay with you? They still use the word to make it gentle but at the same time, there was no doubt what was happening with John. And I do think it’s important to understand that medical professionals are trying to be compassionate, but in that they might not be as clear as they need to be. So if you hear some of these key phrases, make sure that you ask for explanation. Ask more questions. If he’s not responding well, what does that mean? What do you anticipate the next 12 hours to look like the next week to look like, ask questions so that you can get a clearer picture of what’s actually happening with your loved one. I thought that was very helpful.[00:07:00]
Now on to talking about the stages of passing away. There it is one of the euphemisms. Talking about the process of death can be pretty tricky, but we’re gonna jump right in and we’re gonna talk about it. The process of dying happens over extended period of time and oftentimes as family caregivers, we aren’t aware of these signs and symptoms. And that’s why I feel like it’s important to have this conversation.
In fact, when my dad passed away, we were really not aware. We didn’t realize that he was in his final days. My dad had a blood clot and he had to have surgery to have that blood clot removed since it was in an artery. And due to the amount of time that the blood flow was blocked. There were some incisions on his calf that allowed the muscle to swell as the blood rush back to the foot. And those incisions were healing pretty well. He spent some time in the hospital and then [00:08:00] was released to a rehab facility where he received physical therapy and was up and walking. While he was at the facility someone noticed that he had aspirated a little bit of his food. So he was put on puree food. He really wasn’t sleeping. Well, he wasn’t eating well. He would drink when you would encourage him to, and he would eat with encouragement, but it wasn’t his typical food. And so we felt sorry for him to be real honest with you with that pure food, it just didn’t look very good. And I don’t think it really tasted very good.
He really felt like he was just out of his routine, out of his environment and obviously had had anesthesia on top of Alzheimer’s. Those two were not good friends. And so he really just felt like he was on the mend. He walked a hundred feet the day that he was released from the rehab facility, we were able to bring him home. He was so happy to be home. You could [00:09:00] really just tell that he relaxed into things and was content to be back at home.
We had in-home health coming in to help with a continued physical therapy and wound care. And all of those things, dad was released on a Friday and the Thursday following the in-home care nurse stopped and told my sister and I, I can’t leave here another day without telling you guys that your dad has shown signs of being in the last weeks of his life. That was not what we expected anyone to say. We knew that my dad had not had a bowel movement in a while. And we were questioning her on that. We knew that he wasn’t eating very much, but who likes pureed food? I had bought him a big piece of carrot cake just the night before, and he enjoyed a few bites of it.
So when I stopped to think about that, now I realize that he really didn’t scarf it like he would, before. [00:10:00] but overall he was in good spirits and he was doing pretty well. That day. He really wasn’t interested in getting out of bed, but overall he had a good attitude. And actually, when I had looked at him that morning, I had noticed a peace that had settled over him.
After talking about it, we went ahead and called hospice and made an appointment. They affirmed that he was definitely showing signs of his wound going backwards. It wasn’t continuing to heal like it had earlier. His blood pressure was a little inconsistent. And so we enrolled him in hospice. That was Friday, late afternoon, by Monday morning at 5:55 AM. My dad passed away. It was short. It was surprising. But the signs were there. We just didn’t know them. That’s why I felt like having this conversation with you would be so important. I want you to take this information and stick it in your back [00:11:00] pocket because no matter if your loved one is recovering from cancer or just a fall, uh, hip replacement or something like that, eventually you will be walking them all the way home. And this information will come in handy. So I want you to pay close attention. I want you to take note and feel like you’re more equipped and hopefully it doesn’t surprise you as much as it did us.
One to three months before death, there are both emotional and physical changes that are happening in our loved ones. So the emotional or mental changes, possibly behavioral changes as the person starts to accept their mortality. They realize that death is approaching. They might not say that, but you will notice they begin to withdraw or separate from the world, or maybe the people in it during this stage, your loved one might not wanna have visitors. They might not be interested in interacting with friends and they might just, start to kind of push away. This stage can also [00:12:00] be one of reflect. The dying person is thinking about their life and revisiting old memories, evaluating their life. Maybe even thinking over things that they regret .
Physically their body starts to slow down. The dying person will have reduced appetite, possibly weight loss, and actually that’s normal considering their body’s not burning as many calories and the person might start sleeping considerably more.
They might stop feeling hungry or even thirsty at this stage, which can be alarming. And I know like we did, really trying to find those things, which they enjoy and trying to entice them.
One to two weeks before they’re passing away, you’re gonna find that things will move faster. There’ll be even more times that they’re sleeping. And during the stage, you might even have difficulty waking them at times, or they might awaken confused, possibly not realizing where they are. It can be hard to witness those kinds of changes, but definitely [00:13:00] helping them as much as you can with the hallucinations and being able to comfort them as much as possible. They can also be very restless and want to leave or get out of their bed or have jerking motions with their arms and their legs. So this is a time in which that restlessness can become very prevalent and very difficult both for you and for them. This is a point in which I think hospice can be extremely helpful.
So I wanted to offer some thoughts on this part, part of the hospice kit that helps to bring comfort to your loved one during the process of dying includes morphine. And I’ve seen in some support group, uh, online comments about the fact that I gave my loved one morphine and they never woke up again. I would never have given them morphine if I had known. And I can understand that feeling and that concern. But I ran across an article, [00:14:00] 10 Things. Your Doctor Will Never Tell You About Dying. And they interviewed a Dr. Palace in this article and he addressed the morphine issue.
And I would like to share with you what he said. Palace, says the biggest misconception he hears is that morphine is given to patients to help induce death. He says, this couldn’t be further from the truth. Obviously physician assisted suicide is not legal in most. So morphine is not given to Hasan the end when people are dying, Palace explains blood pressure drops and they’re getting less oxygen to their organs and their body begins to respond by gasping for air.
This is called air hunger and the gasping for air is very uncomfortable, both for the family members and for the person experiencing it. Morphine comes into play because a proper dose of morphine relieves the sense of air hunger. So they’re breathing more calmly and more comfortably according to Dr. Palace. [00:15:00] So I think it’s really important to understand. There is a lot of conversation around the use of morphine, but it does play a really important role in helping a person through the dying process, not accelerating it, but offering them comfort.
Hospice will also offer additional pain medications and different things for anxiety. So it’s really important to just ask all the questions that you need to understand during this process of dying, because it is important that you understand, they will ask you to be the one to administer it. So it really does help to have a better understanding of what the medications are doing and how they’re helping your loved one. I hope you find that helpful.
So back to physical changes that are happening in the final weeks of your loved one’s life, you’re going to find that their body temperature is lower than normal. They’ll have lower blood pressure, and possibly irregular pulse. Slowing down then speeding up. There might be an [00:16:00] increase in sweating. There could be some color changes of the skin, possibly a pale or bluish color in the lips. The nails fingers and toes. Breathing will change. Sometimes there is a rattle to their breathing. there’ll be less or no talking, and there could be some additional jerking of the legs and the arms.
So these are signs of death being imminent, things moving pretty quickly in their end of their life. I hope that again, this conversation is not an easy one to have. I think that it’s difficult for us say goodbye. Uh, we’d really rather not, but I hope that you also find this helpful again, to just have a little more information. If you start to see some of these signs and symptoms, if you hear a physician using some of these terms, and you’re really not sure what they’re talking about, it just gives you an opportunity to ask those specific questions.
Knowing the signs may help you prepare for your loved one’s death and bring you comfort [00:17:00] as you face the physical and mental changes that happen along with end of life.
Rayna Neises: Thank you for joining me today. Did you know that September was self-care awareness month and in honor of self-care awareness month, I’ve created a simple and I mean, simple five day challenge for you to consider your self-care. Is there something that you can add to your life to help you take better care of your.
Join me for the five day challenge, September 19th through 24th, to learn more about ways that you can incorporate self-care into your daily routine. Sign up today at a www.aseasonofcaring.com/selfcarechallenge. I look forward to having you join us.
Rayna Neises (2): and just a reminder, A Season of Caring Podcast has been created for the encouragement of family caregivers. If you have financial medical or legal questions, be sure to consult your local professionals and [00:18:00] take heart in your season of caring.
*This transcript is a literal recount of the live recording, please forgive the grammatical errors
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