Episode 68 - Life After Caregiving: Starting Over and The Unspoken Aftermath

​Welcome. I’m Diane Carbo with caregiver relief. And today we have Alicia Huard with us. She, our title of the topic is starting over the unspoken aftermath of caregiving. I’d like to tell you that Alicia has been providing care for a very long time and what she’s going through now as after caregiving.

Has been very challenging and I have so many caregivers that go through this so I thought we’d start with her sharing her story and what she’s going through now. Hey, girl, thanks for agreeing to do this. Yeah, I appreciate you just for your knowledge of the listeners here. Alicia is a, she’s our end of life specialist and she is also a caregiver coach for caregiver relief and we really do appreciate her and I’ve been working with.

Alicia for several years, maybe five or six. And Alicia, I would like for you to first start, tell us a little bit about you and how you got into caregiving. It started in 2007. I had just given birth to my daughter. And my aging parent, my mother, when I was 9 months pregnant, had a massive heart attack. shE had damage to 85 percent of her heart. And she ended up having to have major surgery, which she ended up dying 4 times on the table. And when she came out of it, they ended up having to put her into a medical coma for a couple of weeks to let her body heal.

And excuse me. And. After that, she was going to be the person providing child care for my daughter. So I could go back to work. She was unable to and my husband and I decided that I would just stay home with my daughter with our daughter. And it was during that. Time that I started to help my father care for my mother while I was taking care of my brand new baby.

So that was the beginning of my caregiver’s journey. I Took care of her for the first, for her last nine months till she ultimately had a stroke and my mother passed away in the hospital from complications of that. After that, a couple years after that my daughter was three. My mother in law was diagnosed with a stage four, an operable brain tumor.

She yeah, she had actually metastasized from her lung where she had stage four lung cancer. She went through, started the process of radiation. She then went through chemo after the chemo and radiation were done, she was. Given just a few months to live at that point in time, she chose no more treatment and it was decided that she would go on hospice in our home with my, at the time husband and our daughter, she moved in with us. My husband's father had passed away when he was young, and his mother had been a single parent ever since.

heR, she had. 1 daughters who were in high school at the time they moved in without they were already living with us so that they could continue to go to high school while she was receiving treatment. And I became her 2024 hour caregiver. Because when you’re on, yeah, when you’re on hospice, you need a full time caregiver and then she was with us for about 4 months.

And that was the most beautiful thing. Her passing was incredibly beautiful. And that’s actually what spurred me on to become a death doula because it was a very life changing experience taking care of somebody and watching them pass on from this world to the next world. I had seen my mother go through that transition and that one wasn’t, her passing wasn’t.

Wasn’t as positive as my mother in law’s was and then after my mother in law had passed my, my father was diagnosed with Alzheimer’s and my husband and I decided that it was time for me to take care of him. I’m the only child and my mother had passed at that point about 5 or 6 years prior. So he was all alone.

We moved in here, and so my childhood home, his home, you still lived in and I’ve been here ever since. If it’s been a little over 10 years right now, my timing is off by a few months, but what I want our listeners to understand is during this time. You were unable to work, you were unpaid, had no health care benefits, and you were financially challenged to say the least.

99 percent of all family caregivers struggle financially. In fact, they spend their money up to 1, 200 to 1, 700 a year is what most family caregivers on the average spend. out of pocket for their care recipient. So here you are now. You’ve taken care of your dad all this time. God bless you. I want to, I want you to share, if you will, you went to, you tried to do a job while you were caring for your dad.

I did. While I was caring for my father, I ended up meeting a man who I entered a relationship with and he moved in with us. When his daughter and while he was living with us, he was between jobs and I was able to take a job. So I started driving, doing student transportation for a special needs transportation company.

Excuse me. And during that time, I went to work 1 day. And I was sitting at a stoplight and I was rare. Rear ended, I was hit from behind and from that. Accident I sustained I sustained a concussion, which led to a visual injury. It’s called 6th optic nerve palsy in which my eyes doesn’t turn left and I’ve been dealing with the repercussions of that ever since.

You have a head injury, you have to wear an eye patch and you can no longer drive. Correct yes, so you were very challenged. And now you have a situation where you’re got your dad got to the point where he couldn’t stay at home anymore. Yes. In September of. 2023 he took a very significant fall here at home overnight and that was the turning point where I realized he needed more care than I was able to provide him and I placed him.

We, I placed him in long term care in a facility here in town. I know that was challenging for you. The majority of caregivers have a tremendous amount of caregiver guilt. Let’s talk about that. Because it, it interferes with your. All the good that you’ve done. So I want you to talk about the challenges you face now that your dad’s in a home.

Placing him in long term care was one of the hardest decisions I have ever had to make. I was with him for 10 years and I took care of his. Every need day after day and having to take him out of his home environment and put him in put him into a strange place where, although this is what this is one of the better nursing homes in the area, but let’s face it, no nursing home.

There are no great nursing homes. And if there are, the average Joe, we can’t afford them. Very few people are lucky enough. As a nurse with 50 years experiences, I worked for a long term care two, three, actually, long term care companies as a regional manager at one time. And I can tell you that The nursing homes are 1 of the highest regulated entities in the country, but there’s still so many things that need to be fixed.

We don’t have enough staff. We don’t have consistency, and we don’t have a lot of training that needs to be done. To our, to the residents in these homes. I agree with you. I don’t care if and people think that they’re keeping their loved ones so much better if they keep them in assisted living instead of a nursing home, but assisted living is just as guilty.

That’s a topic for another day, but yeah, you’ve been struggling with the nursing home and you’ve had your issues. Can we talk about that? Because your role all of a sudden, your role has changed. From giving him care and being his advocate to now you have to be his advocate. Yep. Yep. I have, I had to learn to just give up totally relinquish my control and just watch from afar.

And that’s a whole nother, that’s another job. And I have to, when I go there, I have to keep my eyes out for everything. I have to keep an eye out for everything to make sure that his belongings are in his room. He has this Red Sox blanket that goes missing from time to time. Now, he’s known as the Red Sox fan where he is, and it has ended up in other patients rooms.

It has ended up in different areas of. The facility, it’s gotten stuck in the laundry room and there’s no mistaking this blanket. Everybody knows who it belongs to. So I have to keep tracks, tabs on that. I have to keep tabs on his clothing even his wheelchair, the wheelchair story, because it’s like.

How do you lose a wheelchair? I went, I was there visiting one day and he, we were talking, we’re having a nice chat. And then all of a sudden he busts out with my butt hurts. He didn’t say butt. He used a different word and I was like, your butt hurts? He said, yeah, my butt is killing me.

I said why does, why is your butt killing you? I said, I started asking some questions. He said, I don’t know. This chair feels funny. I got to get out of this chair. Now he doesn’t walk well. The reason why he’s there, he doesn’t have the strength. So I was like hold on.

And I started looking around. I’m like, this isn’t your chair. And he said, what do you mean? This isn’t my chair. And then he looks down, looks at it. He’s this isn’t my chair. So I start hunting, down nurses and stuff. There I was in his chair. So they found his proper chair. His chair had a gel cushion on it.

Got him seated properly. Everything was better. Went back a couple weeks later. He was in bed when I was visiting. So we were chatting and all of a sudden I looked around. There was no chair in his room. Great. Go back, find the nurse, tell them there’s, tell her there’s no chair. She’s what do you mean there’s no chair?

I’m like, there’s no chair at all. Not even just the wrong chair. No chair, period. She found it down at very end of the hallway where the chair was. I don’t know how the chairs go missing. They don’t have his name on it. Yeah, they do now. Yeah they should have a name on everybody’s wheelchair. And the other thing is the only thing that I was thinking that reason why I could go missing is there is usually a routine where they wash chairs on a regular basis.

And I don’t know if they took it out to do that or, but they would have left the cushion, his gel cushion, because that’s, those are important and expensive. They should have left that in the room. I, he’s probably not had his chair cleaned. I’m just saying, but that’s usually they’re supposed to be a routine where they take the chairs and they wash them on a regular basis to make sure they get the, Cuckiness out.

That’s something I didn’t know. I should write that down. I should write that down. Yeah. Thank you, Diane. Yeah, but there should be a routine for that. But there’s absolutely no reason. And I can tell you one of the things that I’ve seen in my 50 years of nursing is. Clothes and nice things walk in nursing homes.

I can’t tell you how many Mother’s Day’s, Father’s Day’s, Christmas’s, holidays, birthdays. Somebody will get these gorgeous gifts. And the families mean they really do. They just don’t know that there are unsavory people that come into these buildings. Sometimes. I’m sorry. I hate to say it. I’m wrong to say it.

I’m not wrong to say it. I’m just letting, you have to put your name tags and everything brand new right away. Or even before you give it to somebody and because they’ll walk. They will walk somebody, some of the staff, somebody on the staff will take it home and give it as a gift to somebody else.

I know I’ve seen it hundreds of times, so I always absolutely right. I tell people even in the wealthiest homes. I tell them, hey, I, I suggest you go to goodwill and buy clothes. Don’t take anything new. I know that sounds gross to a lot of people, but I’m telling you, you don’t want to take anything.

upscale and nice, even designer stuff because it’ll walk. It’s just, it’s the nature of our society and culture right now. It just happens. So here you are, you’re in, you are now living in your dad’s home. We’re not sure if Medicaid’s going to take it or not, and as he’s waiting to qualify for Medicaid.

So here you are, you’re being challenged, you’re not able to drive. Explain to the listeners what you did for a living prior to you having your daughter and providing care for your mom and dad. I worked in special education. I worked primarily with children who have severe emotional disturbances, with children who are on the autism spectrum.

I’ve done work with Children and adolescents who were severely traumatized kids who were sexually abused, who were neglected, who were physically abused, kids who carried serious psychiatric diagnoses, such as schizophrenia teens who were suicidal and I love. That’s what I did when I stopped working. I was a 1 to 1 aid for a child on the autism spectrum. In the classroom, so you’d be great at this. Now you’re here.

You are your dad’s been in the home for a few months and you’re desperately trying to find work. I’m trying what I want the listeners to know that this car accident or the car accident you had it. I go crazy because workers comp never sent you to vocational rehab. There was no follow up with you, or very little follow up with you, and it makes me upset because Now, here you are, you’ve been a caregiver, you’ve provided hundreds of thousands of dollars of unpaid care.

You’re not able to save for your own future and now you’re struggling to get a regular job with benefits to help you. Yep, that’s correct. My job search has been very limited to start with. I’ve been looking. For a lot of remote work because I can’t, I don’t drive. I can’t drive due to the visual impairment.

I, the jobs that I have been looking for in my area that are out of the home, I’m limited to what I could afford to Uber to. As well, and still be able to occasionally get some rides home from work or to work my support circle is also extremely limited. My friends either live a great distance away from me, and I don’t really have family.

So I have to work within a very small circle. I’ve, I don’t have, I have very good luck getting interviews. I don’t have very good luck getting hired from those interviews. I stop there for a minute because I want you to tell the listeners that you’re getting really good positive feedback from your interviews.

Yes, I am. Everybody seems to love my resume. They love my experiences. They enjoy speaking to me. They say I would be a good fit with their team, but they go, they choose. Other candidates to move on with. And it is so highly frustrating because these interviews go so good. Yeah. And this last position.

The 2nd to the last position I interviewed for she all but said, she said that. She just had to decide where to put me as there were 2 options and then it took her 2 weeks to get back to me just to let me know that the position was filled right from underneath me. I I, you’re not the only family caregiver that I have supported and then helped throughout after their caregiving journey.

And I’d have to tell you. So many of them end up and most people don’t understand this caregivers, a large part of them become homeless live at or below poverty level. That would be you and they have not been given any kind of support throughout your whole journey. You didn’t have any respite care available to you and this is common.

We have very little to affordable respite care. Your support came from online. I did. Yeah. Yeah, it was my only my only source your only support your support and that only goes so far. The loneliness that caregivers. Experience the overwhelming exhaustion that they feel the stress for so many of my carriers.

Caregivers end up at poverty level or below, and they’re trying to get start over and get a job.

You have the qualifications. You have the experience. You present yourself well. You may have word finding problems once in a while, but. Hey, at 70 years old, I have word finding problems. And you also have experience with the most challenging group of children. The, not just the autistic, but the very challenging kids.

And three or four times now throughout these interviews, you’ve had. You’re told, Oh, you’d be great for this. In fact, the interview you had for you’re not even going for a big job. You’re trying to just get into. And for people that know, want to know out here, she’s Alicia’s not on disability. She went for disability and our government policymakers in their infinite wisdom, make you go through hoops and said that she wasn’t disabled and which is.

Crazy, but then the other approaches, if she goes and takes disability, it’s not enough for her to live on because she’s been unemployed for 10 years. So it makes a very caregiver struggle. They really struggle. And now we have. We have Alicia here. She was told by 1 person that, oh, you’re great.

I can see you’d be awesome at this job. And then she’s told somebody else got the job. So she goes to interview for another job within that system and the principle that she’s interviewing for. For a position says to her, you need really much your qualifications put are so much better for the same position.

You just were told you didn’t get from the other lady. Yes, I can’t make this up. I know, and it’s and here’s my thing and I’m hoping I’m, I’ve encouraged Alicia to go through vocational rehab and I’m really pushing forward. She’s, of course. Nothing happens quickly. I think in November, December, you were told you’d have to wait till the end of January just to schedule an appointment with vocational rehab.

And yes, and I have an appointment now in February in 2 weeks. I have an appointment problem that I have with the people that you, I think the vocational rehab will make a big difference for you. Because number 1. You have, you’re not able to drive and stuff you wear a patch and I am really thinking that these people are not hiring you because they see the patch and they see you with a disability and they don’t want to hire you, which makes me crazy because I have worked with you for over 5 years.

You’re responsible, you’re dependable you are astute in the way you present yourself and you have experiences. I’ve done senior behavioral health. And that’s a tough job and I see that when you’re and kids, oh, Lord, I don’t know if I could do kids. I

Introduction

Caregiving is a selfless act that requires dedication, patience, and love. When caregiving ends, whether due to the passing of a loved one or the transition to a new care arrangement, caregivers often experience a mix of emotions, including grief, relief, and uncertainty. This guide is designed to support caregivers as they navigate the complex emotions and challenges that come with the end of caregiving.

The End of Caregiving

When caregiving duties come to an end, it can bring a whirlwind of emotions. Many caregivers find themselves grappling with a profound sense of loss and an identity crisis. After dedicating so much time and energy to caring for a loved one, the sudden shift can leave a void. It’s important to recognize that these feelings are a natural response to the significant changes in your life. Acknowledging and validating these emotions, rather than suppressing them, is a crucial step in the healing process.

Navigating Grief and Emotions

Grief is a deeply personal journey, and there is no set timeline for the grieving process. As a caregiver, you may find yourself experiencing a range of emotions, from sadness and anger to guilt and relief. It’s essential to allow yourself to feel these emotions fully. Seeking support from loved ones, joining support groups, or consulting mental health professionals can provide the necessary guidance and comfort. Practicing self-care is also vital during this time, as it helps you manage the emotional toll that caregiving has taken on you.

Rebuilding Your Own Life

Rebuilding your own life after caregiving ends can be both challenging and rewarding. It’s important to take things at your own pace and prioritize your own needs and desires. This might mean rediscovering old hobbies, trying new activities, or exploring new interests. Many caregivers realize that they have lost touch with their own identity and sense of purpose during the caregiving process. This period is an opportunity to reconnect with yourself and find new meaning and purpose in your life.

Finding Support and Community

Finding support and community is essential for caregivers transitioning out of their caregiving roles. Joining support groups, whether in-person or online, can offer a safe space to share experiences and emotions with others who understand your journey. Many caregivers also benefit from seeking support from mental health professionals, who can provide valuable guidance during this transition. Additionally, reconnecting with loved ones and friends can help alleviate feelings of isolation and provide a strong support network as you navigate this new chapter in your life.