Episode 68 - Starting Over: The Unspoken Aftermath of Caregiving

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 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 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.

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 think it would be very challenging for me, but you have that experience.

And what did the principal just say to you yesterday or in an email to you about your qualifications? He says about the job being won't be open very low or something about how they have big turnover in that position. Yes. He said that this during the interview, he said this position that position, because he was referring to the special, a special ed paraprofessional position that I had previously entered interviewed for and that's the job that was given away underneath me and he said, Oh, have you ever thought of a position like that?

And I said funny that you mentioned that and I explained how I had interviewed with a colleague of his for that exact same role. And he looked at me and he said, oh that position has not stayed filled. This year, we have someone stay for a couple of days, and it hasn't been more than 2 months at a time that it stayed filled consecutively.

He said, I'm going to speak to. So and and see if we can keep you on the list for future openings. And I just, I. I smiled at him. I said, thank you. That would be great. And he reiterated that in the email that I received saying that's what he was planning on doing with my application and I just laughed I laughed it.

You have to laugh because otherwise you'll cry. Yes, I did that too, but I know. You right now, we don't know if you're going to have a home. We don't know. We're told you're told that Medicaid's not going to go out after your dad's house. That's the last I've heard. There is. An elder law attorney, a financial attorney taking care of his estate.

So I don't know. And he's extremely hard to get a hold of very hard to get a hold of. I have tried reaching out to him several times, but I'm hoping to get a hold of him next week. That's inexcusable. Here you are. You've provided all this. free care and save the government hundreds of thousands of dollars providing care for your mother your mother in law, and your father, and Now you're treated like you're nothing with like a piece of trash.

You have no, you, your dad, you have to have a mortgage on the house, right? Because your dad has taken a second mortgage out. So you have no way to pay the mortgage. You have no income to even pay for utilities and you're desperately looking for a job. People say they need workers and yet you're not able to get a job.

Currently the mortgage is still being paid for by dad's estate, which I'm extremely thankful for. So that's not getting behind on the utilities. I have made arrangements with those providers. I am getting by the skin of my teeth, basically with nothing, literally nothing. Now, you are getting food stamps, but they're taking them away soon.

Yes. The policy was changed for my state Connecticut and March will be my last month. However, because I'll be working with vocational rehab, I believe that will give me an extension. I hope for what I'm for what is needed if people believe that the government's going to take care of you, they are sorely wrong.

I have so many caregivers that end up homeless or end up just barely surviving the health. Affects the negative health effects of chronic stress of caregiving last his study show last up to 6 years after the caregiving journey is over and you're you're caregiving journey. The actual hands on.

Is life after caregiving, you're experiencing life after caregiving, but you're still an advocate for your dad and you're feeling very challenged. It is extremely challenged because you're still, you're trying to deal with so many other things. You're trying to you're trying to deal with everything from the guilt you feel basically on a daily basis.

If you allow it for putting your loved one. Into a facility, you're trying to grieve the loss of your loved one after having been with them day in, day out, 24 hours a day for X amount of years, you're trying to adjust to a new schedule, a new routine where it's just you. You only have to take care of yourself.

I haven't. How to do that in 16 years, and it hasn't been just me and it hasn't been about me for any length of time for any reason, no matter what the reason was, I could have had surgery and I didn't have time to take care of myself because I was taking care of so many people. Now, I have time to take care of myself.

I also have fibromyalgia and I suffer from migraines from the car accident. If I'm in a fibro flare last week, we just have this great weather situation going on up here and it's bad for fibro, but I think it's the stress to caught up with me and I was just in this horrible flare all week.

And you know what I did? I rested. And I felt so guilty doing that, but at the same time, I was like, you know what, I can do that. I can do this. It's okay. There's nobody else here who needs me. I need me. Yes. I want to make the readers aware that you still are under a lot of stress because of your situation, but you also had a situation where you got a call from a friend of your dad's who was visiting.

And your dad had a mental status change. Yes. That puts you in a panic because your dad has been stair stepping slowly through. He's got a very slow, progressive form of dementia and, so you and I were talking and I said does, has he had a year, his urine check, because the first thing you think of is, and this, because you're familiar with it, a urinary tract infection with that, or does he have, because he's got swallowing disorder and he's on pureed food, does he have aspiration pneumonia, which could call cause him to have confusion.

And I'm like. What are they going to do? Are you going to put them on hospice?

Trying to help you talk through what we need to do. And I said, you call that nurse's station and you tell them if they didn't check for a UTI and pneumonia, they need.

I did call, I did call. I was waiting to speak to his friend and get a full update, a full overview. And I did call the nurse station and I spoke to his nurse and. And I did let him let her know that I was concerned about his mental state because he didn't know who I wasn't. That is very unusual.

And I just put it in her ear to check in with him a little more frequently verbally, and check. Where he's, his orientation level and I gave her what his baseline should be. And so he's back when I saw him. What day is today's Thursday when I saw him yesterday, he was in a much better position back to where his normal baseline.

So he seems to be. Par for his course, there's going to be good days and bad days. Absolutely. But this will be the is definitely the plan. I know it is. I know it is. I just I was like, it just happened so fast because that's been so unusual for your dad. You've been, we've been following him together for a very long time and he, he's you have to explain your dad's a very outgoing, loving, funny guy.

Oh, he's a funny guy. He is. A jokester. He has everybody laughing. If you're not laughing and have a good, having a good time, then he's not doing his job right. He likes to play tricks on people. He is. He likes to poke fun at people. Still does. He just likes to have a good time. He likes to make people laugh.

He likes to make people feel good. He is also very. Inspirational, he just celebrated just this week, celebrated his 47th year of sobriety and he's been a major inspiration to literally. Thousands of people. So that's just who he is. And he's got 40 and he's still in AA. And that's, we were talking about this earlier.

Guys were in the military always bond. They can be from so many different types of life. And when they're working together as a unit, they have a bond Nothing I've ever seen and women don't usually have that ability to have that kind of bond. Like they do the guys do in the military. We do now with women's sports and stuff.

But before I'm 70, 70, going to be 71. We didn't have that. I didn't have that experience. And I have another gentleman who's since passed, but he was in a forever as well.

The impressive thing is for guys in a, or women in a, the bond that these people create during their recovery journey is amazing. And I think that's the key to why so many. Stay strong and on the straight and narrow path, so to speak, they don't fall off the wagon because they have developed those bonds.

And I know with Kim's dad, and with your dad, they still had guys come and take them to meetings or visit them in the home. That's. Amazing. To me, that's wonderful. Those social connections. And I really believe that the, that these men coming to get your dad so often for his meetings, social, socialization and physical activity delay the progression of the disease.

And that's why his doctors. He said that he was progressing as slowly as he was because he was going out to his meetings, four or five nights, six nights a week. He had friends coming to pick him up routinely, regularly. He was walking several times a day. I would walk the neighborhood several times a day, when my daughter lived with us for up until high school, she kept him young, the doctors said because of his social interactions, he was moving so slowly because he was stimulated.

I actually have a report that we have on caregiver, a lot relief about how you're hearing and how you approach your loved 1 actually can slow the decline of the progression of the disease and it's proven. So I have a report that I did research for, and I have it available on the site. On how you're caring, and how you're carrying an attitude towards providing care can actually help your loved one slow the progression.

And I see your dad is the perfect example. And I think that because of your background with special ed kids, you took a totally different approach to providing care that a lot of. Caregivers wouldn't it's a lot of work to get your dad ready. And I say, all the time to go on. Yeah, it gives you a few minutes break.

But, you still have to get them ready and, make them be have help him to be patient while he's waiting for someone to pick him up. And it's very good. Yes, to be there when he comes home to help them again. ANd I, we had our routines. You had your routine.

Yes. But that routine we had our routines. You encouraged him to do as much as for himself as possible, for as long as possible. Yes. And I, that's, the difference. We there's some rehabilitation means you can improve your function. You can rehab your arm to, to do increase the length, the range of motion or whatever rehabilitation, but habilitation is just staying status quo.

You're not going to improve. And I think that you. You forced your dad in so many ways to stay independent for as long as possible in ways that other caregivers would say, because I know as a, I'm a, I did rehab for years and I always laugh because it's hard work. Rehab's really hard work, but one of the most challenging things is to be patient and not do things for a person while they struggle.

And I think that you approach that really, I applaud you for that. Thank you. He's a grown man, he was in his 70s and 80s. He's also a very proud, stubborn Frenchman. And there was just certain things that he was not going to let me do. He shaved himself. So I observed, and his vision was not so good, so I kept, watching to make sure he didn't miss any spots, and I stayed there with him, but he was shaving himself, he handled his own hygiene, he would dress himself, he is colorblind, so I would pick out his clothes.

But he handled all that, he knew enough to know what needed to change daily. His, his underwear, his socks, and I got out his clothes for him. He can bring his own dishes to the sink, yes, he can. He can get the snacks. Yep. That's I left everything that he can have available.

Yeah. He knew where everything was kept. Most caregivers want to create dependence, have them create a dependence on them. And it puts so much more pressure on them. But because of your background and teaching, you knew not to do that, so I think he stayed as well as he did and independent for as long as he did.

So that's why I know now you're really struggling because. yoU are you have anticipatory grief because you know your dad's declining and he's in, in now in the nursing home, but then you have a whole you have to grieve not just the loss of your dad, but your life with him. And that's hard.

When you have someone with a dementia diagnosis, it's called the longest goodbye for a reason. You watch them daily, little by little, lose more and more of themselves. So you're dealing with all these memories of the person that they were, and you're trying to reconcile them with the person that they are.

And you also have the knowledge of the person that they will become. So you have to merge all of these together. And this can all happen in the span of 60 seconds. And That's really a lot and, I'm sitting here in my childhood home right now I'm looking at. It's beautiful built in wall, and I have my knickknacks, and then I have about eight shelves full of Hess trucks that he collected.

And I see the oldest one from the earliest 80s, from the early 80s. I was like five. Those Hess I can. Yeah! Yeah I can, they're going all the way up through the years there and I can't imagine taking them down. 'cause then this house just won't be a house. Yeah. I gave a couple to my daughter the la co couple weeks ago, and that was fine because it, they're hers too, so that doesn't bother me at all.

But I can't imagine taking them down because it's part of the house, they're him.

And so you just grieve from the moment that. They get the diagnosis and now that he's gone, there's just a lot of space here for me and it's a small house, but it's a lot of space and I don't know what to do with it all the time. It's not just the space, but you have time like you've never had before.

I haven't had this time. Ever, I don't think, and it becomes over, it can be overwhelming because I don't know what to do with it. I do my job hunting business in the morning. It's the first thing I do after my coffee, and then I have some downtime. I Do my, housework and all that stuff, make my phone calls.

And then I don't know what to do with myself. I have options. Wow. And sometimes that's a great thing. There's

there's joy to be had in it too, and that produces some guilt as well. It's amazing how much guilt there is and where it can sneak up on you when you are done with the caregiving. Caregiving alone, but I can Is the, huh? What was that? The role of caregiving. Is the most guilt producing role you will ever take on.

Yes, I agree with that and, and it negates it's the worst emotion to have because it negates all the good you've done. And it just focuses on the bad. And that's why I tell people get rid of the guilt. But, hey, I get it. I, when I find myself feeling guilty, I'm going nope I've done too many things to get this far.

Nope, I'm not feeling guilty. I deserve this. And that's one of the things that our caregivers, the majority of them, they don't feel they're, they have the time or they're worthy enough to take care of themselves. I know over the years, like you were in the hospital 1 time and I said, you were talking to me and I said ask them to do this and this.

You couldn't even advocate for yourself. You're tired and this is why you're providing care for your dad, say, if this was your dad, you'd be doing this, get this and this done. And you were like, oh, yeah, because you're so tired and so focused on 1 person for so long that you don't even see yourself as worthy of anything or.

Or a value that you need to take care of yourself. I've dealt with so many like that. I was a caregiver. So I understand, challenging. I remember that. I remember that time. Yep. The guilt that comes along with feeling that joy though, because I will get excited sometimes when it's oh, I'm done with all my requirements for the day, I can paint.

Or I can, oh, what else can I get into today? And I can get into a project that I've been putting off or I can just talk on the phone with friends. I have downtime. And that is a really nice thing to have after so long of not being able to have it. Yes, your challenge right now is you could do more if you could drive if you had a job or if you just had some kind of income and our government really has dropped the ball.

We have Family caregivers provide over 650 billion dollars of unpaid care a year and they go they're invisible to the health care system and they're ignored. And unappreciated and often neglected and abused by other family members or extended family members that think that you are not doing anything, but you're taking advantage of people because you're living there.

They don't have any clue what it takes. So it breaks my heart. But that when a caregiver comes to the end of their journey and you're left with. This you're a shell of yourself because you haven't taken care of yourself for so long and you just want to be back to normal. And now the world's not letting you get back to normal for whatever reason.

That's correct. Yeah. And you're struggling and I really want people to know that this you're, you are. Not unusual what you are going through. Alicia is not unusual and there's more people like you out there. Then there are the ones that live happily ever after. It's the stress and strain. I lose 2 to 3 caregivers a year to death or a serious illness where they're no longer able to provide care for another.

And that's also hard. I'm glad we've got to this point, but now we, we've got to get you over that hump to get you employed. And I'm hoping vocational rehab will help you because I think that with that involvement. At least they'll be able to go they'll advocate for you to get transportation and you're desperately needed.

You are desperately needed. And I laugh because I said something to you about what you could be a caregiver. Yeah, I could I knew I, because I am at that place to I, some caregivers, There's they go right back into that role and they want to do it. They get paid to do it. Oh, Lord have mercy.

You can't do that. You're not there. I can't do that. I, if I were to, it would if somebody very close to me needed it, I'm obviously I would, but. No I'm not going to choose to do that for a vocation for a profession, but I do. I do. No, thank you. Alicia, I I'm going to put the word out there.

If anybody's got a job for her in the Connecticut area, I think you just let us know because she'd be an awesome employee. She's reliable, dependable. She's funny. She has a great sense of humor and she's caring and sincere. So that's my recommendation for the caregivers out there. I just want you to know you are the most important part of the caregiving journey without you at all falls apart.

So please. Learn to take care of yourself, learn to practice self care every day because you are worth it. I'm Diane Carbo and thanks Alicia for spending, sharing your story with us today. Thank you, Diane.

​