“Where did those ten years go?”: the daughter struggling to make ends meet while caring for her mother with Alzheimer’s
I never left home, like a good Cuban. My dad died when I was 9, and my mom never remarried, so I always felt a responsibility for her as her only child, especially since I’m not married and don’t have children of my own. Around eight years ago, I started to notice she would forget her keys, or she’d forget to take her medication. She loved to cook, and she was always cooking the same meal, Cuban beans. Always the same one. Those are the things that, when you’re busy and caught up in the day-to-day, you think it might just be old age, right? Then, one day, I got home and she gave me a really strange look, and I realized she did not know who I was. She was diagnosed with Alzheimer’s, and ever since then, I’ve been her primary caregiver.
I resigned from the parish where I’d been working so I could focus on getting her settled. I signed up for a home-care service and got an aide to come in four hours a day so I could look for another job. I tried to get her into the state program for the seniors. That took a while. She had social security benefits from an earlier bout with cancer that left her disabled, so that was something, but that’s obviously not enough to sustain the two of us. I had some savings, but then that ran out after a few months, and we were in major trouble. My mom was a seamstress her whole life; she doesn’t have a retirement account. I lost my car. The rest of the family — cousins, her nephews, her sister — helped us for a while. That’s how I survived.
In September 2018, I finally found a full-time job as an administrative assistant. And so I started working. But the aide was constantly texting me, asking me about whether or not she should give my mother her “as needed” medication. And I could only afford to keep the aide on in the morning, so my mother was alone until I’d get home from work at 5:30. I’d call her from work and have her keep me on the phone while she watched the news. Within a month, I had to resign from the new job. I couldn’t do it.
We used to live in a duplex that felt like home, with a beautiful patio, but I had to let go of that. The rent was almost $3,000 a month, which I could no longer pay. I had to sign up my mom and I up for an affordable-housing program here in Miami. And so now we are in a building on the fifth floor. I do some temp work here and there, but we’re at a point where I’ve requested additional hours and additional help from the state, from Medicaid, and the insurance is denying everything. I’m surviving on her social security, plus the 40 hours a week that the state pays me for as her caregiver. I get food stamps, and those basically just cover Ensure and oatmeal for the month. In the meantime, I’m doing 14-hour days, plus whenever she wakes up at night and I have to help her go to the bathroom because she no longer can pull down her pants or her Pampers.
I told our social worker that none of this makes any sense, and his response was, “It’s an unfortunate situation.” Those were his words. I wanted to scream at him. They want me to live on this money that’s impossible to live off given the state of things.
I haven’t gone on a vacation in eight years. I haven’t had a day off in eight years. I’ve barely been to the doctor. I can’t go out. I’ve been in this new building for five or six months, and people have come by to visit maybe three times. I’m obviously lonely, but she’s lonely, too. I know it’s not her fault. It’s a disease that anybody can get. But it’s been almost ten years. You start to think, Where did those ten years go?
“I’m afraid when I’m dead, he’ll be neglected”: the single mom managing her son’s violent meltdowns
My son is 21. He is autistic, he has severe ADHD, he has intellectual differences, he has OCD, he has anxiety disorder with panic attacks that slide directly into meltdowns, and he has ulcerative colitis. He is very childlike. I tell people he is joy wrapped in human skin, but he looks like a burly guy. He’s taller than me and he’s about 360 pounds, so he’s a big guy. He loves and identifies with smaller children. Now, when he approaches other people’s kids, the parents freak out.
Right now, I’m dealing with very aggressive meltdowns where he swings his fists. I’ve been to the hospital several times and was admitted into the ER for X-rays. I’ve had concussions. I’ve been injured quite a few times. One time, he put a crack in my orbital socket bone, so I had a black eye for a month and a half. I do get afraid. But once he’s out of the meltdown, he’s a completely different person. It’s like a thunderstorm happens in his brain, and he can’t control the thunderstorm. He can’t figure out when it’s going to happen. It’s random, and once it’s over, he kind of goes into a brain fog, and he gets upset because he realizes something bad happened, but he’s not completely sure what. We’re lucky that the police in town are very well trained, and they have a relationship with the disabled recreation group in town, because I’m able to call for a medical crisis and they can come and restrain him, and either he goes to the hospital or they restrain him until his extra meds kick in and he calms down enough to be able to go back into the house.
When he was still in school, I couldn’t take a job because if he had a meltdown, I would have to go pick him up. I can’t find anyone to sit him, because either they’re prepared for kids like him but it costs so much that I cannot even dream of affording it, or it’s someone without any skills, and I have to worry if he’s going to attack them and end up in prison and us sued. So right now, I do delivery and he’s in the car with me. That’s how we make money, and we pretty much live off that, and the kindness of friends and strangers.
I am always tired, always stressed. There’s not a moment where I’m not scared. I’m a single parent. There’s no one. There’s no sitter, there’s no help. My mom is dead. I have sisters, but they don’t live nearby, and they have lives of their own, their own children. I don’t have a support network. I’m incredibly lonely. My best friend moved to Texas for a job, so she’s not even in the state anymore.
I’m worried because I’m 50 and I’m not going to live forever. He does not recognize when people are being mean to him. He doesn’t recognize when people don’t have his best interests in mind. He doesn’t recognize villains in stories, and so I’m afraid when I’m dead, he will be abused or neglected by the state in some way, and there will be no one to speak for him.
“She knew she wasn’t pulling her weight”: the sisters who became estranged after their mother’s stroke
My mother had a stroke several years ago. My older sister and I, who live within driving distance of my mom, took shifts caring for her in the aftermath. My younger sister, who is a doctor on the East Coast, wanted to manage the medical details from afar. She wasn’t present, but she had a lot of opinions. We’d be dealing with the day-to-day, and she would say terrible things about us and the care we’re giving my mom.
She would send these long emails and have these phone calls where she was berating us. Eventually, I decided I’m not reading these anymore. She wanted to be in control but knew she wasn’t pulling her weight. I don’t think people understand the level of coordination needed to care for someone. And I feel like if there is somebody who’s not doing the day-to-day, they should just shut the fuck up.
It came to a point where we were in the hospital with my mom waiting for a doctor and my East Coast sister called and she was screaming at me, so I just screamed back at her, “Leave me alone! Why are you like this?” I think I cursed at her. And then a nurse pulled me aside and said, “You mom is very sick. She’s not going to do what you want her to do, and you need to be patient with her.” I had to clarify that I wasn’t talking with my mom, but with my sister, and that I would never talk to my mom like that! I realized that this was a disaster. I couldn’t be taking care of my mom and managing the negativity from the East Coast. I needed to get out, so I stopped answering her calls. I even blocked her number. She blocked me on socials.
We no longer talk to her since this experience, which I think is something that’s happened to a lot of people. One sibling ends up not doing as much or not wanting to care in the same way as the other siblings, and you end up with a fracture.
For a long time, it all made my mother very sad. But she doesn’t like to think about it. Now, though, she’s had a little more mental degradation, so she kind of lives in her own world. My therapist warned me that also means my mom has lost her filter and can also be quite negative. So despite everything my sister and I do for her, she’s not appreciative. She’s kind of resentful of the help that she needs. I just feel super lucky that I have my sister and I try to be supportive of everything that she does, but I know it’s hard because my mom can be very negative and, frankly, unpleasant as she goes through all these cognitive changes.
“Maybe we were selfish to hold onto her”: the mom supporting her terminally ill daughter and her husband with Huntington’s disease
I’ve been a caregiver most of my 59 years. I’m one of the oldest on both sides of my family, so as a kid, at family gatherings, it was always, Lisa will watch all the cousins. When I was in college, I had a grandmother who experienced a number of significant strokes, so I helped my mom care for her the last two years of her life. I cared for both my mom when she had breast cancer and my dad when he had aortic aneurysms.
I had my daughter in 1994. I was told she was perfectly normal. But then she experienced her first seizure at 7 months and was diagnosed with epilepsy at 10 months. Between 3 and 4 years old, she started showing signs of delays. At 5, she was diagnosed as having a broad-based developmental delay, and at 13, she was found to have an undiagnosed congenital heart defect that they believe caused a rare heart and lung disease. We were told that without aggressive treatment, she would pass very quickly. Even with aggressive treatment, they didn’t think she would survive a year. That was over 17 years ago.
Then my husband, he’s in the middle stages of Huntington’s disease. His walking’s starting to be affected, so he’s fallen four times in the last couple months. His short-term memory is starting to go. Recently, he left to go to the bank, and he called me twice because he could not remember where he was supposed to be going. So, he does his own thing as far as taking care of himself, but I have to manage all the money and make sure all the bills are paid. I have to make sure the house is maintained. I have to make sure the cars are maintained. I have to make sure everybody gets to their doctor’s appointments, that all the meds are picked up and refilled when they need to be. I manage a central line in my daughter’s chest and about 30 pills a day.
About a year and a half ago, I went part-time at work. I was an accountant working 60–70 hours a week during tax season. I just couldn’t do that anymore. My husband and daughter both had some progressions with their respective diseases, and I just didn’t feel like I was doing a very good job anywhere. We got our home licensed as what’s called a sponsored residence for our daughter — basically a group home for one — and that allowed me to leave work in January. There was a lot of belt-tightening, but it was doable. I don’t get manicures anymore. I don’t worry about buying clothes.
I have a very small circle. I’ve learned over the years people get tired of hearing about it. You tell somebody that your child is dying, and initially they’re all there to support you. But over time, those people fall away. We would make plans with friends to go out, and last-minute we would wind up in the ER and have to cancel. After a while, people just don’t call you anymore.
Plus, people are well meaning, but they say some of the dumbest things. I was 42 when my daughter was diagnosed with her heart condition. The prognosis was very grim. And we actually had a family member who said, “Well, if she passes, you’re not too old to have another child.” And I thought, What the hell? You think having another one’s gonna make up for it or something?
When she was diagnosed with her heart and lung disease, there weren’t long-term survivors of this disease. And, quite honestly, if I had known 17 years ago what her life was going to look like, I’m not sure I would’ve made the same choices for her. The options we were given were either this aggressive treatment or setting her up with hospice and enjoying whatever time she has left. My husband and I, we’ve talked about how maybe we were selfish to hold onto her.
I’ve gone to see therapists three times in the past at various stages in this journey. And they’d all say, “Oh, you’re doing so great. I don’t know how you do it.” But nobody gets it. Most mental-health professionals, in my experience, don’t really understand compassion fatigue or caregiver burnout or chronic stress disorders. They just see that on the surface you look like you’re fine because that’s how you get accustomed to functioning. And you don’t get any validation when you’re having a really bad day. I mean, I’m a cussing, door-slamming mess some days. I used to not be like that, but as the years have passed and things with both of them progress, I’m progressing with them.
“He started saying he hated me every day”: the woman who divorced her husband with multiple sclerosis
Ten years ago, my husband was diagnosed with multiple sclerosis. He couldn’t walk. His skin was gray. When we finally went in for an appointment, the doctor took one look at him, put him in a wheelchair, and sent him to the hospital. For a brief moment, things were all right because we finally knew what was wrong and there were drugs and rehab, but then we moved from Seattle, where we had always lived, to be closer to his family in the Rust Belt. What I discovered immediately is that people get grief fatigue and they just don’t help you. I had no friends and no one to really talk to.
I was doing all the cooking and all the cleaning, I was trying to get him to appointments. You’re not a wife anymore; you’re a caregiver. Especially as a woman, you’re supposed to do the caregiving work. You’re supposed to do it with a smile. You should be pretty when you do it, and you shouldn’t be a bummer to be around, and we shouldn’t have to worry about you, and it should all be behind closed doors, because it makes people uncomfortable. And what I discovered is the moment people are uncomfortable, they shut everything out.
But soon, the MS began hitting parts of his brain that caused personality changes. He became really cruel. He was really mean all the time. He started saying he hated me every day. I lived with that for several years. All he wanted to do was drink. It got to the point where he was suicidal. He tried to kill himself twice in front of me, and I decided then that I couldn’t do it anymore. So I packed my things and left for Indiana. It just became clear that I was going to die too, if not from offing myself, then from all the sadness and pain. Years had passed, and absolutely no one had asked how I was. Some people were driven by guilt and did check in, but no one ever asked about me. It was always about him.
I filed for divorce. I’ve felt judgment from friends and family. I’ve heard it too: How could you? I don’t really have contact with a lot of people. Those who didn’t cut me off when he got sick absolutely did after I made the decision to leave. He was a good man and we had a good thing, but there was my husband before the disease, and then there was just the disease. I was battling a disease. I was living with a disease. It wasn’t him.
Now, he’s in a nursing home and can’t sit up for more than ten minutes at a time. I tell people that I’m a widow, because how do you explain this? How do you explain that you’ve done the worst thing that you can do to another person? That I’ve abandoned my boy, like Sophie’s Choice? How do you explain that’s who you are?
“He didn’t deserve the amount of energy and empathy I was giving him”: the son caring for the dad who disowned him
I grew up in the South in a deeply religious family. It was a good childhood until I came out in middle school when I was 12. My parents didn’t want to deal with it at all, so I had to leave and was on the streets for a few months until I got into a boarding school. After that, I went to college and moved to New York.
My mother passed away first, and it was really hard on my dad because he had already lost one wife before her. My sister was the responsible one in the family. She was a doctor and was going to be the one to take care of my parents eventually, but then she passed away. So it was just me left with this man that I feel like I didn’t owe anything to because he kicked me out. But I still had this guilt because he was my parent.
He remarried, but in 2021, he and his new wife got into a car accident. He broke both his arms, both his legs, two ribs, and his jaw. He also ruptured his spleen. They weren’t sure he was going to make it, but then his sister called me after his first surgery and said he’d been asking for me. I was like, I do not want to go see this man. Why is he asking for me? But then I remembered I didn’t get to see my mother before she died. So I went down there. His wife was discharged but was still very injured, and her family just left him to me to care for: shaving him, giving him sponge baths, helping him after his surgeries.
I was there for three months, not really working. The thing that really hit me was the price of gas. I spent $650 on gas one month because everything down there is so spread out. It was wild. My dad wasn’t going to help me with any money.
I was pretty much at the nursing home around the clock for that first month. I still don’t know what I would’ve done if he hadn’t gotten better, trying to figure out who would be bathing him and all that.
It was emotionally taxing because I feel like he didn’t deserve all that from me. He didn’t deserve the amount of energy and empathy I was giving him. I feel like he got lucky that I was his kid and not somebody who would completely throw them away.
The thing that I will remember the most is the first day I was there that he was awake, a nurse came in and he introduced me, like, “Oh, this is my son.” And then she said, “Oh, I didn’t know you had any kids.” And he was like, “Yeah, he came back from New York to take care of me.” And she said how sweet that was, but he basically cut her off and said, “Yeah, but if my daughter was alive, she’d be the one who was here.”
And I’m just thinking, like, I tried to come take care of you and you still can’t give me any credit that I am actually here for you right now, not the dead, perfect sister that you wish was still alive. I’m sorry I can’t give you all the things that she could have because she was a rich surgeon, but I’m here doing the best I can. I will never forget that.
“I feel like I’m being erased”: the woman who left the workforce to care for her aging mother-in-law
My husband and I have always lived in the same building as his parents. It’s the kind of thing that makes you realize that this is how families were meant to be. When our children were little, my in-laws were right here to help. We had so much support, the kids got to hear so many stories; it was just rich and lovely. And I got an awesome mother-in-law. I come from a fucked-up family, and my mother-in-law really taught me how to be a wife and mother. I mean, I owe her all my happiness.
The people in this family live for fucking ever, it’s unbelievable. One cousin lived to 104, his grandmother lived to 99, all with their faculties completely intact. We figured that’s what would happen with my mother-in-law, too. But she’s 90 now, and about two years ago, she started showing signs of dementia. I got her in to see a neurologist, and the doctor confirmed that she had dementia, and it was most likely Alzheimer’s. We don’t know that for sure because she refused further testing. And I didn’t blame her for that, because the tests are humiliating. Who’s the president? I don’t know. What month is it? I don’t know. What season is it? I don’t know. I wouldn’t have wanted to do it, either.
It’s not bad enough right now that she’ll accept a nurse or a professional caretaker staying with her, and that would be hard for us to afford anyway. I’m a freelance journalist and probably made $12,000 last year. My husband makes more money than I do, so it just made more sense that I take on the caregiving. So I basically don’t work anymore. We live next door to her. She comes in whenever she wants, sometimes because she’s lonely, sometimes because she forgets why, often to look for her hearing aids. I manage her finances, her medication; I do her grocery shopping and am making almost all of her meals. My mom died very, very quickly from cancer, like in a month after her diagnosis. And in retrospect, that was so easy. All you had to do was love her. I love my mother-in-law, and I owe her so much. It’s just all very labor intensive.
I don’t know that my husband and I ever had a conversation about it until it had already happened. Sort of after the fact, he asked, “Are you okay with this?” And I’m like, it’s the only solution. But I feel buried alive. I feel like I have no life. I was extremely identified with my professional life, writing for big publications and podcasts. Now, I feel like I’m nothing and a nobody. And it’s really hard not to get annoyed with her sometimes. She’ll do things like completely turn off the heat and be really upset at the building because she thinks they don’t have any heat. We alarmed her door so we know when she’s going in and out. I put AirTags on freaking everything she owns because everything gets lost all the time, but she’ll throw them away because she doesn’t know what they are. If I am trying to write something or if I’m in a meeting, I’ll put a sign that says “Do not disturb, in a meeting” on my door. She walks right in.
It’s only gonna get worse. She’s in perfect physical health. We take her out to the country in the summer, and she swims in the lake like an Olympian. So my husband and I are just like, Is this the rest of our lives? If she lives another ten years — and she probably will, given her family’s track record and her physical condition — my husband will be in his 70s. And he could be having his own problems by then.
We had one meeting with a social worker who specializes in memory care and another with the neurologist, and they both told us not to tell her she has dementia, to describe it in terms of process, like, “Your memory’s getting worse.” But lately, she’s been asking, “Are you sure that’s all it is? Because I think I’m going crazy.” And so I don’t know. Do we tell her? I would want to know. I would never want to do this to someone I love, like my children. I’m not as serene a person as she is, and even she’s getting really agitated.
The social worker we met said, If you want her to die, just put her in an elder-care facility. She’ll be dead within a year. I mean, she would have to have no idea who we were for me to consider something like that, and regardless, that would eat into our savings, which would eat into our retirement.
I haven’t told anyone I work with. Being a freelancer, it’s like you’re not a real person. If you’re not pitching people, they’re eventually gonna forget you. They might send you an idea once in a while, but if you say, “I’m sorry, I can’t do it,” eventually they’re gonna stop calling. So basically, I’m doing what she’s doing. Just fading away. Being erased.
“She’s not the person I fell in love with, but she is the person I’m presently with”: the woman caring for her wife with brain trauma
My wife is retired law enforcement, and she has had multiple head injuries that were related to work, so there is a presumption that she has CTE, but you can’t diagnose that until after they’ve passed. There’s a whole host of neurological issues that we’re dealing with. She also has cirrhosis, and she’ll probably never qualify for a transplant, so it’s a terminal disease. She’s permanently partly disabled because of different injuries to her back and neck, so there’s a lot of chronic pain. We are not at a point where I have to help her with bathroom needs and stuff like that, although there are times where she does need help with the shower and with getting dressed because of metabolic issues.
Our marriage was not all that great before the diagnoses. All these medical issues were happening and she would go on these horrible, vicious, violent rants that could last for days, but she’d have no recollection of any of the vile things she’d said to me. I was actually looking at divorce. And then we started having to go to the hospital, and they finally said she has cirrhosis and has five years to live. I decided to just stick it through. But I was very bitter when I had to give up my work to be able to care for her. I was at the top of my career and, boom, I had to stop.
As an agnostic Quaker, I try to work through forgiveness. You try to let go of some of the ugly stuff that’s happened over the years and remember there is a disease that is causing the behaviors. She’s not the person I fell in love with, she’s not the person that I married, but she is the person I’m presently with.
Recently, she’s started talking to a psychologist, who has done amazing work to help her through the anticipatory grief of her own demise and also with understanding my perspective. She’s doing much better in terms of actually trying to live. She does aqua therapy and can now swim 20 laps. I will say that I almost feel like I’m falling back in love with her again, but in a different kind of way. We sleep in separate bedrooms, which is a topic most caregivers don’t like to talk about. How do you deal with a sexless marriage? How do you find peace when there’s no intimacy?
I was the one who made the decision to stay. And because of my due diligence, she keeps defying the odds about her prognosis. But honestly, there was a point where I did stop and say to myself, Stop insisting she goes to the doctor and it’ll all be done. You can move on with life. But I can’t do that. The thought is there, but I can’t do that morally, ethically, spiritually, or just as a decent human being. I cannot choose to ignore her medical needs because I made the choice to stay by her side and to do my best as her friend and as her wife. And maybe I don’t love her the same way, but in the last six months, through her work with her therapist, she was able to say to me, “I’m sorry for the way I treated you. You always deserved more than I was able to give you.” That was a pivotal moment. It was an apology I never expected to get from her. It made me feel like I made the right choice to stay and give her the best quality of life, because I know in her heart she does love me.
“I was the Wizard of Oz behind the curtain”: the woman whose husband asked her to keep his liver transplant secret
My late husband was a prominent doctor, university chair, and textbook author. He went around the world for lectures. In our town, he was a very visible person, as well as in his professional community. Early in his career, he believed he got pricked by a needle and contracted hepatitis B. He’d never been sick, but he was a carrier. In 2001, when he was almost 60, he started feeling poorly, and we went and found out his liver had deteriorated and that he needed to have a transplant. Over the year we were waiting for the transplant, he deteriorated rapidly, but he never wanted anyone to know, which was extremely difficult.
He developed encephalopathy, so he would have periods of time where he was just hallucinating with symptoms similar to Alzheimer’s. Sometimes he’d just be wandering around the house and didn’t know where he was. And I’m trying to cover for him with everybody, trying to make sure he doesn’t go to work on those mornings when I’d come down and he’s talking to people in the kitchen that don’t exist. Not being able to have a support system because it was supposed to be a secret was probably the most difficult part of it. He’s the one that went through the illness, so I didn’t want to make it about me. But there was no support system for me because I couldn’t tell anyone apart from my adult daughter.
I was the Wizard of Oz behind the curtain, dealing with his failing health in secret, trying to make him appear normal and capable as things slowly deteriorated. When people asked to get together for dinner, I’d have to make excuses. Eventually, people were calling me, asking if he had cancer. I said that he absolutely did not, but I didn’t elaborate. I just said, “Y’all need to mind your own business.” I just stonewalled them because I didn’t know what else to say. He was adamant we weren’t going to share this information.
Quite frankly, I never felt he was going to die. He kept saying he might not survive, and I would just say that that’s not going to happen and he would get the transplant. That’s how I got through it: by thinking this would be temporary. This went on for an entire year until he got the transplant. On our way to the hospital, he started calling people to tell them what was going on. He stayed on the phone for three and a half hours telling them he was in liver failure, but that he’d call them back once he was better. People were calling me too, but I was a wreck.
He never came out of surgery and died from an infection in the hospital a month later. I spent 16 hours a day with him in the ICU. It wasn’t until after he passed away that I actually recognized how heavy a load it had been. As sad as I was that he died, my immediate sense when he did was I felt like 1,000 pounds had been lifted off my shoulders. And that’s a guilty thing to admit. It took me a while to come to grips with that feeling and forgive myself for that.
“Why me? How much more can we take?”: the woman who cared for her sister with ALS, husband with terminal cancer, and mother with Alzheimer’s
The last ten years of my life have been all about grief and caretaking. In 2015, my kid brother went out for a run and dropped dead from a heart attack at 40. We were just getting over that when my older sister was diagnosed with ALS the following fall. She lived on the other end of the state, but I started driving to spend 24 hours caring for her each week and give her family some respite. It got progressively worse. I helped with feeding tubes, showering, bathing, medications, comforting her, and conversing with her. By the end, she didn’t have a voice. She was in bed, completely paralyzed with everything except her eyes. But I still got the benefit of being able to leave, come home, and have a safe space to cry in my shower. Her family never had that.
She passed away in 2019. Two years later, my husband was diagnosed with terminal cancer. Luckily, my employer was amazing and made taking FMLA leave very easy. Once again, I was a caregiver, but this time I spent 24 hours a day with him for months. And this was during COVID, so not many people could see him.
I was shell-shocked throughout the whole thing. That’s the only way I can describe it. You’re put in this position where you’re now a full-time caregiver who’s not been medically trained, who has to learn all these new things — because ALS and cancer care totally different — and has to navigate medications and radiology and chemotherapy and appointments. I had friends who would come watch him for an hour so I could walk the dogs, but that was it.
The cancer spread and was inoperable, so we started hospice care at home. Someone would come an hour each day to help, but that was it. The cancer affected his brain and his behavior changed. He was getting very angry and combative at times. He would be sobbing. He would be confused. He died in June 2019, just a few months after he was first diagnosed. But it was a relief that it didn’t drag on too long because I couldn’t go through that again: seeing someone suffer like that.
But just months later, my dad passed away, and I had to bring my mother in to live with me. I became her full-time caregiver for eight months, and that was really difficult. Alzheimer’s is something completely different. She’s now in assisted living, but I’m still her primary caregiver.
All the time she was living with me, I was just thinking how this fucking sucks. I’m thinking, Why me? How much more can we take? I’m trying to grieve, and now I’m caring for my mom. But I also felt guilty for all the things I was doing wrong with her, and all the mistakes I’d made or the things I’d missed while taking care of my sister and husband. We can’t do everything correctly, but it still eats you up. I should be better at it by now, shouldn’t I?