Life After Caregiving with Gary Newsome, Chaplain and Director of Spiritual Life, Lake Prince Woods Retirement Community

[00:00:02] What you want when you want it, where you want it. This is The Mesh. This is a 3-9-8-0 to talk with the representative that can discuss with you the PACE-It-Home All-In-Clusive Medical Approach. PACE-It-Home is the champion for seniors wishing to remain in their community.

[00:00:46] Welcome to The Caregiver Community. This is a place where we talk about the joys and the challenges of caring for our aging parents and loved ones, as well as caring for ourselves. I am Prince's Hall, founder and executive director of ACAP Community, Adult Children Vaging Parents.

[00:01:08] In this podcast we are going to talk about Life After Caregiving, something that most caregivers experience and frankly a stage of caregiving that can bring challenges of its own. I am delighted to be joined by Reverend Gary Newsome,

[00:01:25] Chaplain and Director of Spiritual Life at Lake Prince Woods Retirement Community in Suffolk, Virginia. Gary has been a licensed ordane minister for 12 years and has a master's in pastoral studies. He is a hospice chaplain and a bereavement coordinator so he provides lots of spiritual support,

[00:01:44] repations and families in palliative care and at the end of life and for the family for time even beyond the death of a loved one. To be completely transparent, Lake Prince Woods is a

[00:01:58] community of every age. ACAP's wonderful collaborative partner. Hi Gary, thank you for joining us today to talk about such an important topic and so universal. It's like everybody pretty much experiences this.

[00:02:13] So thank you. How are you today? I'm doing well Francis and thank you for the opportunity to share it as truly an honor. That will thank you, thank you. Okay so anticipating the time when our caregiver

[00:02:28] journey has ended can be difficult. I've done that a couple of times now. It means that the one we are caring for, our loved one is no longer here. Not only do we anticipate the grief associated with the

[00:02:44] loss. It also means that our daily life will be different and all of that can be so hard to imagine. So let's kind of unpack some of those. Let's talk about some things. Gary what do most people

[00:02:58] experience when their caregiver journey ends? In other words, when somebody has been a caregiver for an older adult loved one and that loved one dies, want to caregiver typically experience an often struggle with as they deal with life after caregiving. Yes, well I think it's first

[00:03:19] important to note and to understand that the support of caregiving there's a it could be a span of over weeks months and sometimes years. So one can imagine the emotional and spiritual build-up during that time. So what loved ones experience after a loved one dies, they'll experience natural

[00:03:43] grief something that we all experience when we lose a loved one. I love this quote someone said grief is an individual imprint in other words each person is different in their own personality

[00:03:57] how they deal with grief and the longevity of it. But most of all I believe that an experience that loved one's experience withdrawal, there could be an overwhelming sense of loss that's really hard to process and this sometimes could necessitate counseling or attention in a group

[00:04:19] setting. The other things that caregivers experience and this is really interesting a sense of guilt did I do enough? Could I have prevented some of the decline? Was I perfect and then you have to

[00:04:35] think is this real or is it imagined? So that's a tough thing to the process through your mind. Yes, it is. Yeah. Yeah. The other thing is and I think this is very important and it doesn't

[00:04:49] get mentioned within this context a lot is the caregivers miss the actual routine of giving care in other words you know there's a schedule there's the popping of the pillow there's the feeding

[00:05:03] there's the washing of the clothes there's the the prayers there are other things that go on in terms of the routine and these routines bring purpose and self-worth. So when that is a taken away

[00:05:19] a caregiver may feel lost their perspective may be skewed a little bit and just in terms of who they are and there's a journey that actually continues after their loved one dies in reintroducing

[00:05:33] themselves to people the world family and those kind of things and we just pray that there's a positive effect versus a negative effect after that. You know that's interesting that you come into

[00:05:48] carry on on the routine of caregiving and that that routine what we are accustomed to for whatever length of time is disrupted but it's no longer and so I remember with my mother and her caregiving situation with her mother my grandmother was extremely intense and I remember that

[00:06:14] it it took a real toll on her and that it took at least a year or even more for mom to kind of get back I get back a mungle as I always said kind of get back a mungle living because everything that she

[00:06:34] had known for so long was no longer and she had to reclaim and re understand who is she as a person and which is for life made at that point. Yeah because the mere nature of caregiving you're almost

[00:06:50] lose yourself in that process. Absolutely. Often people do jobs are affected relationships with family and friends are affected what we normally naturally typically do in terms of activities and recreation and just everything can get affected and so yeah when we take that out all of a

[00:07:18] sudden we are left with this this big hole of well now how do we plug that up. Yeah that's why support systems and I'm sure we're going to be talking about that but that's why some of the

[00:07:30] support and the resources available can help getting that person back to almost tastiest if you right and well being and an emotional human being that is caring and still loving. So again

[00:07:49] there are there are negative things but there also could be positive things that would come out of that. Let's that's a great segue and the question that really had not even occurred to me

[00:08:02] can you talk I mean we know the negative we know the grief we need we know the sadness we know that emptiness but what are some positive things that can come from from life after caregiving.

[00:08:16] Well I've had experiences dealing with caregivers after the experience just in terms of becoming more of a loving person perhaps finding their calling in life. I've known some that have gone on to be either certified nursing assistant or nurse going back to school

[00:08:38] volunteering at a place like this here at Lake Preds or other facilities may perhaps a hospital so you can actually find yourself if you will in that process and you can dedicate your life to be

[00:08:55] as I mentioned a loving person to be a caring person or this is what I really want to pursue in my life. So those years or months or whatever validates that person and it actually becomes a very positive

[00:09:14] experience. That's lovely and yes a lot of times what people I think experience as a caregiver they didn't know they had it in them and they learned some skills and become aware of some things

[00:09:30] that they would not have otherwise wouldn't have known and so yeah exactly again I'm thinking about my mother during this in terms of her caregiving situation and after you know after caregiving

[00:09:46] and because the rescue squad in our little town in Alabama had been so helpful to during my grandmother's lifetime that after my grandmother died my mother at the age of 62 or 64 or 65 became an

[00:10:06] EMT you know and we do the ambulance runs and all that kind of stuff and it was like I remember the my brother and I were like really mom is doing this so you're absolutely correct there are

[00:10:19] all sorts of things that we can learn and become aware of through the caregiving experience that truly propel us and make us not a different person but a different person. Yes, yes, nicely put Francis very nice. Okay so so this is great, great segue. So while we are

[00:10:47] in that caregiving journey what are some things we can do at that point and sometimes when I know this it's sometimes it's yeah in all our spare time and with all our spare energy in the

[00:11:02] midst of a caregiving situation but what are some things that we can do during that time to help prepare us for life after getting it. Well I'm really big on community and that's a big buzz word

[00:11:17] it's not only just people and that's a very important part being around the caregiving but community is an atmosphere where foresters are a sense of belonging, a sense of peace, enjoy, a disaster, selflessness, giving and sharing which is what the care giver has been doing

[00:11:39] all along but when you're in a group setting like that and it doesn't necessarily have to be a support group it could be a church, it could be bingo, card games, bowling with people, family gatherings

[00:11:55] all of those are resources to promote strength and confidence. I think that's one of the biggest things to surround yourself with positive people and to kind of keep your mind diversified and not

[00:12:12] just on the toil of caregiving. I think one of the other things that can be done as well and this is hard is to pay close attention to your own soul if you will. Your own well being and these are

[00:12:26] the simple things like exercise, listening to music possibly getting away for a little while for some respite, relieving of caregiving duties so you can be refreshed, asking for help. How many and I've

[00:12:45] seen caregivers don't ask for help. They feel that they can do it all alone, sometimes they get isolated in that support and in that care and they just forget about themselves talking with someone,

[00:13:01] being honest with another person, praying with someone, just ignites that grace of God and that energy that you're going to need. All of those things could help the inevitable and during that time while you're caring for yourself. Right, right. Yeah, and again those are some

[00:13:24] I'm going to call them life skills that we need during the caregiving process or caregiver time but we also need them afterwards. And of course every time we talk about church or or any of that, we really are talking about faith communities with effort. Yes. So wherever someone

[00:13:47] built drawn and led. Yeah, yeah, that's very important and it's not just a here theology but it's just that and we have that here at Lake Prince where I encourage our residents,

[00:14:02] not just to come the church to be a good or bad person or those kind of things or it's a sense of community where people are coming together. It's a sense where there's an atmosphere of worship and singing and togetherness and talking and getting to know one another

[00:14:20] and sometimes we take those things for granted. So it's always important to be plugged in no matter what type of community that you belong to. Right, right, absolutely. Absolutely. You have mentioned grief and we've kind of talked about grievous. We've talked already. We often think about

[00:14:44] grief as being the grief after someone passes. That's kind of when we typically think about grief, we think of that kind of loss but there are other kinds of losses and other kind of grief.

[00:14:59] Can you talk some about other kinds of grief that might be part of this life after caregiving? Yes, that's a very good question. One of the big ones, if you will, is anticipatory grief. It's

[00:15:17] very common and grief in the heart of the matter especially anticipatory grief. It asked the question, how do we learn how to say goodbye? I remember during the Ronald Reagan years when he was declining

[00:15:35] and it finally came out that he had Alzheimer's but Ronald Reagan the patient was trying to prepare his wife Nancy. And I think we all remember the phrase, The Long Goodbye. Right, right,

[00:15:50] and that is a way he was trying to prepare his own wife for this anticipatory grief that I may not be around long and I need you to be prepared and I don't want you to

[00:16:05] be overcome with grief and worry but I'm just trying to prepare you. So is that anticipatory grief on the other side of that? There's shock, there's denial, there's a refusal sometimes and

[00:16:21] it does a puttory grief to talk about the inedivable and a healthy way. There is a healthy way to talk about death but that gets lost in the process of support and taking care of someone.

[00:16:36] It's so hard, it's so hard to talk about that person's death. I'm sorry, go ahead. Oh no, no, you're absolutely correct Francis. It's very hard to talk about it because during the support there's so many things to attend to and to care about but unfortunately this

[00:17:01] anticipatory grief, it can turn into anger, emotional changes. Sometimes there's even an anger at God and why is this happening? Why are you allowing these things to happen? Then the anger it can turn into a deep concern for the future. I mean already thinking about life without my

[00:17:25] loved one or the one I'm caring for and if you have that kind of thinking you have diminished hope, diminished energy and you're already depleted so we really need to watch out for this anticipatory grief and get some knowledge, healthy knowledge, a healthy way of thinking about

[00:17:51] the ined. The other type of grief is something called complicated grief and now this is a type of grief that may require some counseling and group setting attention because this is a prolonged grief

[00:18:10] sometimes for years. I've known people who have suffered loss especially the loss of a spouse and the grief prolongs over years and they're withdrawn, they don't participate, their thought process is a different. Those are called complicated grief and again it may

[00:18:33] necessitate in a group setting, counseling or some group counseling that help that person to see things in the right perspective. Right, right. I think probably most people, I may be mistaken here and I'm kind of thinking that most people experience some level of anticipatory

[00:18:59] which is just recognizing that this person that we love and that we are caring for is going to be going away, and that there's nothing we can do to stop that from happening and that's really hard but it's really important to recognize what we can do about that.

[00:19:22] But I love your definition of anticipatory grief. Will you read that or say that one more time? Yes, anticipatory grief asks the question, how do we learn how to say goodbye?

[00:19:38] How do we learn how to say goodbye? That's because the reality is our entire life is a series of both acquiring the probably more saying goodbye to lots of different ways. So I really like that definition, I like that. Yeah, that's pretty much in its simplest form.

[00:20:05] Clinically speaking there's actually a term for this complicated grief. It's called persistent complex bereavement disorder. Now that's a mouthful of course but it would be equivalent to PTSD or what a military person may go through after coming back

[00:20:26] from overseas or war seeing so many things and those are pretty serious. And we do have caregiving situations where one may fall into that category. Sure, sure. Well and caregiving can be

[00:20:43] really intense and at its best it can be intense but it can be very intense. And so that analogy of sort of a PTSD, I want to think about that a little more but I'm not sure that that is very far off

[00:21:04] that kind of makes some sense. I had never heard the long mouthful just of all always sort of complicated grief which kind of suggests that the relationship and the passing of the

[00:21:19] left one, that there is just so much wrapped up in that that there's just lots to unpack. Yes absolutely and particularly when as I mentioned earlier there are caregiving experiences where you're giving support over a span of years. Especially in a hospice situation

[00:21:41] there are sometimes where it's just the inevitable doesn't happen right away. There's such a build up emotionally and spiritually and eventually that has to be channeled or released in some fashion. Right, right. It's sort of like holding your breath. Yes. No one time. Yes.

[00:22:02] Well since we're talking about the grief and and life after like after caregiving you mentioned earlier about support. And we've talked some about some support but talk more please about types of support that are available for the former caregiver. Where can people turn? What are some sort of

[00:22:28] universal places that people can turn for support after the caregiving journey ends? Well Francis you and I know there are so many resources that we have that are available to us online

[00:22:43] and in books and magazines and just locally so many resources. Some of the ones that come to mind are the Alzheimer's of association, the American Cancer Society VA caregiver care hospitals are a great resource. Hospitals provide support and programming. They do a wonderful job for local and regional

[00:23:11] people that are living in those areas. One organization that we all know about that I was part of for many years is hospice organizations. Now hospice organizations have built in bereavement specialists. There's a whole unit that are that have specialized highly trained

[00:23:35] bereavement counselors, social workers, volunteers and their programs after the person dies where they're a follow-up for male. There's male, there's personal follow-up. There are things that are happening almost a year or two after the person passes away and I don't know if

[00:23:58] people know this but hospice is a government requirement when it's assessed and when it's appropriate and it's also a government benefit. So within all of these organizations there is so much help for that person after the fact. Hospice is a wonderful organization and I certainly encourage

[00:24:26] our listeners to learn as much as possible about your hospice, your local hospice. Let me ask a question though relative to the journey after caregiving when the loved one has passed, if they were not part of hospice prior to that death, would the caregiver or the loved one

[00:24:52] the caregiver would they be eligible to tap into hospice resources after the passing of a loved one even though they were not part of hospice or do they need to be part of hospice

[00:25:08] in order to receive the benefits afterwards? Yeah they would have to be part of hospice to take advantage of those benefits if they were not they would have to seek other caregiving support which is readily available it would be easy I mean there are the American Cancer Society

[00:25:30] and the Alzheimer's Association of Hand they have publications and within those publications there are those kinds of resources places where they can actually go locally to get that help

[00:25:44] but if it's if it is hospice you would have to be part of that. Yeah you know and of course I know Cancer Society American Cancer Society and Alzheimer's have wonderful, a wonderful resources

[00:25:59] when the people are going through it I did not realize are you saying that Alzheimer's Association Cancer Society and others have resources for caregivers after their loved one has passed? Oh yeah absolutely as a matter of fact they partner with organizations like every age

[00:26:20] the organization I'm part of and sometimes they have representatives that come on site to give explanations and presentations of what they do locally and they invite the community to be part of that so absolutely okay okay did not did not realize that okay let's let's talk about

[00:26:42] spiritual care how this spiritual care and and I'm going to be very clear but this is not just for Christian people who's expression is Christianity but rather for all faith expressions well what is the role of spiritual care in helping people navigate along the

[00:27:03] African giving? Well spiritual care is really important because the goal of spiritual care is to relieve spiritual pain. Now that's across the nominations it's not necessarily Christian anyone and all of us experience spiritual pain now what is spiritual pain? Spiritual pain is loneliness,

[00:27:28] hopelessness the inability to connect itself worth it's depression it's a it's a it's a litany of things that we all go through through certain times especially through the loss of a

[00:27:42] loved one so the goal is spiritual pain for either a chaplain, a pastor, a counselor, a social worker there's some overlap in those titles but the all of the goals are the same is to help minimize

[00:28:00] and eventually relieve some of the things that we're all plagued with so the spiritual care is very, very important and I do want to say the role of a chaplain is a little bit more expansive than

[00:28:18] the role of a pastor we all know that a pastor has a congregation they have a building a chaplain may have that but a chaplain is outside of the building it's outside of a congregation when the whole

[00:28:33] world is there their congregation and you have to learn how to minister for like a better word to those who may be outside of your own denomination your own religion to learn how to minister to those

[00:28:52] people to bring this them to a wholeness or a soundness does that make sense? Absolutely it does absolutely my husband was a chaplain okay so yes I'm glad that you the two talk about the

[00:29:05] distinction of that and again chaplain can be from the Christian tradition but also a rabbi chaplain is very much can be very much intervade so yeah yes absolutely and today we're seeing spiritual care not only in the healthcare setting but we're seeing spiritual care of course

[00:29:35] in the military we're seeing it in the workplace a lot of Fortune 500 companies see the value in spiritual care and they have an ancillary andcillary personnel particularly chaplains to help employees deal with work and family divorce those kind of things so we're seeing the marketplace

[00:30:05] getting information and seeing the value of spiritual care just so fundamental for some so many people well let's you this has been great information is there anything else scary that we ought to be

[00:30:20] talking about or the people that it would be helpful for people to know in terms of managing and navigating their journey after their care of give a journey well of course you know we

[00:30:34] want to encourage those after their loved one passes away there is hope there is help and they're not alone um I think one of the things that we tend to think about is

[00:30:50] what can we do you know we're always thinking as human beings we feel that if we're not doing something we're not as complete as we should be where the focus especially after who can I be

[00:31:09] and I think if we concentrate on some of those things I love with a German theologian Dietrich Bonhoeffer said he said when a loved one passes away not even God feels that void

[00:31:27] he said God purposely leaves it open so that we can stay connected to our loved ones and I think that's a phenomenal and profound statement because even God would want us to be connected to our

[00:31:43] loved ones so I want to give encouragement for those who have taken care of their spouse or their loved ones or whomever it was who had passed away that they continue to keep that person alive because they are who we are they are represented

[00:32:04] of the legacy and in so many important ways we need to continue that legacy so I would say don't think about so much and doing think about who you can become and I love this phrase

[00:32:23] compassion is not just about caring for others it is also about extending that same kindness and understanding to ourselves. Amen yes definitely definitely that's a great way to end this thank you Gary so much this has been some great information and just some really some really good stuff

[00:32:51] to be thinking about to be thinking about as we go through as we live our caregiver journey but also particularly as we have ended that journey and that part of our lives and we're trying to

[00:33:05] figure out well now what what's next so thank you thank you for being with us and helping us to understand these kinds of things that we can do. Thank you. I also want to say thank you

[00:33:22] to our listeners we hope this information will be helpful as you continue your caregiver journey and beyond we also certainly want to thank face at home and degree North Carolina. They are our sponsor for all caregiver community cop podcasts and we are in duty indeed grateful for their

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[00:34:26] Again Gary thank you for being with us and thank you for your our listeners stay well everyone by brain now. You've been listening to the mesh and online media network of shows and programs ranging from business to arts sports to entertainment music to community. Our programs are

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