This is the first installment of a three-part series entitled Unsung Heroes: The Face Of American Caregiving. In honor of National Family Caregivers Month, The Huffington Post is highlighting a few of the remarkable people around the country who put their own lives on pause to tend to friends and family who have fallen ill. This installment features those who care for partners. The next piece, which will be published on Nov. 10, will feature those who care for parents. The final piece, on Nov. 17, will feature those who care for multiple people.
Introducing 11 people who are delivering care to sick partners every day with profound compassion, often putting their own needs on hold. During National Family Caregivers Month, we want to pay tribute to these unsung heroes, who are selflessly meeting the needs of their partners. We hope their stories will inspire you. Certainly they've inspired us.
These stories were compiled by Rebecca Adams and Yagana Shah.
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Dennis Anfuso, 59, is a caregiver for his wife Linda, who has muscular dystrophy.
"Every day we play it by ear. One of the reasons that it worked so well with me being her caregiver was that if she had a really bad night and was unable to sleep, I would just stay up with her. Then we’d go to sleep together in the morning. The days when she’s not up to it, she just doesn’t get up. When she first got diagnosed, they didn’t think she’d live past her 30s. She just turned 58. I think that says a lot. Her theory is, if you have a reason to wake up in the morning, you struggle to wake up.
At night, I’m illustrating books and working until 4 or 5 in the morning. I had to give up being a full-time artist, because you have to travel and meet people and do a lot of shmoozing. I belong to a group called the International Wizard of Oz fan club. Through them, I’ve met a lot of other people, some of whom write books but don’t have an illustrator. They hire me to illustrate their books for them. I honestly have always ended up putting myself last on the list of people to take care of. It’s not right, but you just end up doing it because everything else seems like a bigger priority. I just figure that when I’m doing my art work, that’s my ‘me’ time and that is the thing that makes me feel really good.
One important thing I learned is that you really can do just about anything you set your mind to. When she first got sick, I had never even been around handicapped people. But if you just believe that things have to get done, you just do them. Then you find out it wasn’t as bad as you thought it was going to be and you feel good because you finished it. You learn as you go. That’s kind of what life’s all about.
So many people don’t realize that we were given a gift. Being given a time limit on Linda’s life made us enjoy every single day, because tomorrow is not guaranteed. I know so many people who wrongly believe that, because they’re not sick, tomorrow is guaranteed -- and it isn’t. You step out the door, you can get hit by a car; you could have a stroke. If you put off pleasure and don’t do things today, there’s no guarantee that there is a tomorrow. We learned that early and it’s served us really well. Whenever we make a few extra bucks, we go out and enjoy it. There’s no big savings for the future."
Charles Gray, 88, is a caregiver for his wife Grace, who has dementia.
"On a daily basis, I do everything. I’m a 100 percent caregiver. She’s a very needy person. I don’t mean that as a negative, but she needs me all of the time. Every minute and every second of every day I have to be with her. That’s a strain on me.
My whole life I’ve been an artist and I’ve given up my art work, of course. I can’t do that at all. I feel bad about that, of course. It’s just that I can’t get away; I can’t concentrate on it now. Art requires 1000 percent concentration, so I just can’t do it anymore.
I really don’t take care of myself. I read magazines. We get The New Yorker and Time magazine, and I find those short articles quite nice, because while I’m sitting with her and she’s watching television, I can drift off into a story. That helps me get away from it, but that’s as far as I can get. I don’t resent being a caregiver. I do it out of love, because we’ve been married for 67 years. It’s what I want to do.
She comes first in the house, and the whole family knows that. We discourage anyone from telling her that she has dementia, because that’s only cruelty. She said today, ‘Where is my husband?’ so I sat down and put my arm around her and tried to explain that he’s right here and he’s been here for years. As the days go by, she gets worse and worse. That's all I can say; that’s all I know. I can see it happening everyday.
I haven’t looked for any [support groups]. I don’t think I can find anyone in the exact same situation that I’m in and so what if I did? It’s not going to help me. And when would I talk to them? My life turned out to be a caregiver, but I’m not a remarkable person. I’m just a person who does it, that’s all. There’s nothing remarkable about me."
Angel Trimm, 25, is a caregiver for her husband, Adam, who has Post-traumatic stress disorder (PTSD).
“He was deployed to Afghanistan in 2010 and when he got back he was diagnosed with 100 percent PTSD. So on top of caring of three children, I had to take care of him.
He lost all the support from all his family, which is why we moved to be where my family was from. Then we moved to Tennessee and my family was just as judgmental and not understanding of the PTSD. There’s a real lack of support there. No family. No friends. We stay in. We’re just a tight knit family. We don’t go out to stores. We order our stuff online because of the stress put on him and us when we go out with his condition.
I suffer from PTSD myself from sexual abuse myself in childhood. Our whole family is kind of a chaotic mess but in all we’re pretty sane and we handle everything well. The kids -- they’re very knowledgeable of it. They know the condition.
I don’t know how I manage, actually. I take it day by day. I’m a part of a Facebook group of veteran’s wives, families of victims of brain injury, those types of things. I read a lot, get on the news and stuff.
I’m an aspiring photographer why is part of why we moved to Colorado. I was planning furthering my education, but that had to be put on the back burner. I’ve become obsessed with the mountains out here, nature, just anything outside.
I’ve been practicing yoga for about seven years and that’s a good way to get a good peace of mind. I do meditation. Have quiet time. Have a long shower. We live across the street from the mountains where I can go take a job and clear my mind. Some days are better than others.
I had a child when I was 15. I was picked on in high school. I always felt I wasn’t good enough, or strong enough to do any of this. We go to VA counseling and talking to the counselor gives me a better perspective of how strong I really am and how much I really do. Sometimes it’s hard for me to see.”
Jerryl Lynn Rubin, 65, is a caregiver for her partner, Amanda, who has non-Hodgkins lymphoma.
“It’s more common to have people of my generation take care of their parents. We’ve [my partner and I] been together about 11 years.
We went to England and she got weaker and weaker throughout the trip. Once we got home, the diagnosis was made of stage 3 non-Hodgkins lymphoma. We were just going along with our lives. I didn’t know how it would be, because this kind of cancer, they use the word “incurable.”
She was more susceptible to germs. The house needed to be particularly clean, visitors had to be checked. We were used to going out together to movies and shows, but even when she wasn’t tired, she wasn’t supposed to be around people that were sick.
You can’t really plan for the future together and count on it. That is hard. Sometimes I would get resentful like all caregivers, and I’ve had many times when I got angry over small things, because I was drained by everything. I had certain things I needed to do for sustaining myself, like journaling and working out. Sometimes I just had to leave the space to get my head on straight, to get balance and perspective.
The positive in my story is it dramatically improved our relationship. She opened up a lot about her feelings about the illness, her feelings about death and life. The experience of the caregiver is dramatically different from the patient. One just needs to survive. The other is, “How do I support this person and hold onto myself?”
One of the insights I had was that no matter whether you’re getting treatment that day or not, life is still happening. Each day you want to find some vitality and find some fun -- find some meaning, even if it’s during treatment. It’s something I’ve never been conscious of. You want to make even a hard day as positive as you can no matter what it takes, because you don’t know how long you’ll have each other.
Because of the sensitivity of having a same-same sex relationship, not all our family supported our relationship. But one positive gain was even if their religious beliefs included prejudice against same-sex relationships, watching us operate as a couple changed the feelings of some of them. It was love in action."
Daphne Hooder, 80, is a caregiver for her husband, Bob, who has Alzheimer’s disease.
“My husband started acting not himself, subtle little signs about 8 years ago. In 2008 he was diagnosed with Alzheimer’s. I kept him home for 5 years. The first couple of years it wasn’t bad, he just was very forgetful. Gradually, it got worse.
In June 2013, I found him on the bathroom floor. I realized I couldn’t do it anymore. Now he’s in a nursing home. I visit him twice about twice a week.
The last couple years I could not leave him alone. It was a stretch financially, but I never felt resentful. I felt like he deserved the best care I could give him.
I went to several Alzheimer’s support groups, which were very helpful. I think it’s important to get up and move if you can leave your love one with somebody.
Me, I always made sure I went to the beauty shop because I’m 80. I’ve been dyeing my hair since I was mid-50s or earlier, and I just did not want to turn into this white-haired old lady! I made sure I had enough money to go to the beauty shop and have my hair dyed and taken care of. That was important to me -- that I looked OK.
I don’t feel like I deserve any accolades. I did what any mother or wife would do. I just feel like you do what you have to do. I realize this is the new reality. He’s where he is and he’s getting new care.”
Larry Bocchiere, 63, was a caregiver for his wife Deborah, who died of emphysema in 2013.
"Spousal caregivers lose a lot. They lose their best friend, their lover, half of the team that raises the kids and keeps up the house income.
When we first got the diagnosis, it was real tough. It was like a feeling of emptiness, of bleakness. But you learn to put one foot in front of the other and keep going. Truthfully, it wasn’t until the last two or three years when I felt like it was an abyss, where I had truly lost my partner. The love was still there. I was with Deb for 47 years, so that never changed. But there did come a point where I was a tired, she was tired and we knew that we had really lost what we once had and we were just in a holding pattern.
I look back at it now, and I say, ‘How the hell did I ever do it?’ I don’t know. You do what you have to do, especially when you’re dedicated to someone. I don’t say that caregivers are superheroes, but they go above and beyond what normal people do. They’ll get up early to get the house ready, take care of their loved one, go to work, come back, cook meals, go shopping, take the kids where they have to go. By the end of the day, you don’t want to do much except get in bed.
That’s really why I preach self care. You have to do something, because if you don’t, you will literally whither and die. I was lucky enough to have a face-to-face support group. That's really what helped save me. Another thing that happens to caregivers: They lose sight of their own health. I turned into a stress eater. Since my wife passed, I lost 91 pounds. I used to sit and eat all night long. I’d sit on the couch, get up, have something, get up. It was all from stress.
I’ve learned that I’m human. I’ve learned that you need to take care of yourself while you’re taking care of someone else and you need to maintain a life. You still have to maintain something for you. You can’t just be all involved and absorbed in simply caregiving or when the caregiving ends, you’ll be in a lot of trouble. Reach out and get a support group. Nobody can do it alone."
Bruce Friedman, 58, is a caregiver for his wife, Melinda, who has early onset Alzheimer’s disease.
“I had to place my wife -- a former lawyer, and a wife and mother to our sons -- in a memory care facility. [Caregiving] starts to take up more mental energy and it starts to just wear on you. I got to a point where I needed to get healthy and stay healthy for her sake and mine.
I started getting up at early hours, walking outside or on the treadmill. I eventually made it a priority because i realized I needed to be healthy to take care of her. It helped with stress and worry -- you feel like you’ve got more energy to deal with caregiving responsibilities. You have to carve out me time to avoid becoming burned out.
Burnout is very common. If you’re burned out you’re at your wits end, you lose patience, and patience is the most important part of being a caregiver. Find a way to get respite. It’s hard.
Trying to balance my caregiving role, my work life as a divorce lawyer and being both father and mother to my sons has been the most challenging experience in my life. I learned empathy and patience that I probably didn’t have as much of when I was younger and more driven in my career. It has definitely made me a better spouse, a better person, a better parent, and I guess I learned how deeply I love my wife. I came to the realization that maybe people sometimes take for granted, over the years, their marriage. Thee relationship changes for sure. The love morphs into different things. It’s still strong, but it’s different. There’s no way it can’t be.
I have slowly but surely become more of an advocate about this disease, particularly its impact on younger families, and even wrote a letter to the editor for the St. Louis Post-Dispatch, my first and only time, which was printed. The topic was the oncoming avalanche of Alzheimer’s disease.
Although my wife is now in a facility, my role is now that of COO of her care."
Terri Corcoran, 64, is a caregiver for her husband Vince, who has Fragile X-associated Tremor/Ataxia Syndrome (FXTAS).
"We were married over 15 years ago, and he wasn’t right from the beginning, but I didn’t realize that. I actually didn’t need to care from him full time until 2004, which was five years into the marriage. By then, he was really disabled mentally and physically and couldn’t be left alone. My husband was brilliant; he was a PhD laser scientist. He turned 80 this week and he’s still physically healthy -- he’s just got a non-functioning brain.
I do everything for him. In the beginning, it was putting all of the handicapped accessories on the house, redoing the bathrooms, getting stair lifts. I was helping him shower and brush his teeth and helping him walk. By 2005, it got totally impossible for me to handle it on my own. He was falling down a lot, because he didn’t understand that he needed help to get up and he didn’t have balance.
I started getting some health aides, because I was just breaking down and burning out. I still have to clean my husband up in the morning, because he’s totally incontinent. I have to puree all of his food, so I have that routine down. It’s just doing everything. The food and the laundry and the doctors visits and just keeping that straight. Plus, the house and the finances. Everything’s on me.
I try to find time every day for myself, my own quiet time. I do go out to lunch a lot with friends. I see my daughter and my grandkids once a week. I work out every day in the afternoon when the aid goes home before dinner.
I’ve just been so heartbroken by the whole thing. As far as myself, I don’t feel like I want to be doing things without my husband. I thought we would travel together and just do nothing together. We are so compatible, and nothing can replace that. So it’s not like I feel like I need to travel or I need to do this or that, because I just don’t want to do it without him. I sacrifice stanity sometimes, but I want to do this. I’ve been bound and determined that we were going to have some kind of a marriage. He was going to get good care, and our marriage was going to mean something.
When I look at the past 15 years and what I’ve accomplished, it’s just amazing that I actually got through it. It makes you a more compassionate person. I’ve been able to be a better friend to other people and hopefully a better mother and grandmother."
Dennis Marasco, 60, is a caregiver for his wife Elaine, who has Alzheimer’s disease.
"I kept her home at first. I’d leave for work for a few hours, come back at lunchtime and take her into the office. But in 2011, she went to the hospital for an infection and the doctors told me, ‘You’re not going to be able to lift her yourself; you’re just not going to be able to handle this,’ so I took her to a nursing home nearby. We were still taking her home two or three days a week for dinner, and she would come over on the weekend and sit outside.
She’s been at the nursing home for three and a half years, but they just eventually forget how to walk. You know, the mind just doesn’t tell them what to do. At some point, sadly, she’ll probably stop eating. Now she’s back to being chair-ridden, so it’s a little more difficult to take her home but not impossible. We still get her home on Saturdays and Sundays to sit with us.
I have breakfast with her every morning, and I visit her three or four times a day. I’ll sit there with the newspaper and update her on current events and bring in pictures or videos of the kids when they were small. I have her hair done once a week, so I sit with her while she does that.
On the physical side of it, I don’t have to change her anymore; I don’t have to dress her or get her ready. I may pitch in here or there with that, but it’s not like when she was home and I had to do it all, including give her the meds. Giving the meds can be a five minute deal or it can be an hour deal, depending on what her mood is.
You don’t realize what your responses to a situation are until you’re put into the situation. I feel good about myself. I’ve taken on this responsibility. I don’t like the kids to feel any obligation, so I never put them in the position where, ‘If you don’t come over, mom can’t come home.’ It’s the responsibility of the spouse to be there for them. It’s not what I figured I’d be doing in my 50s. I don’t think anybody wishes that. It very simply could’ve been cancer or some other type of disease -- this is just what we were dealt. My point is, this is not any worse than any other disease that somebody else is going through and I’m not special. You just have to look at the situation, decide what needs to be done and go forward and do it."
Bonnie Little, 60, is a caregiver for her husband Harry, who has Parkinson’s disease.
“He’s been sick about three-and-a-half years. We’ve been married 30 years. He’s a Vietnam vet so he has health conditions related to agent orange exposure. It started a few years back where his driving wasn’t right and things weren’t just going how they should have been -- that’s when he got diagnosed with Parkinson’s.
I had to leave my job to be home to take care of him. I was a licensed real estate broker.
Now I have to do all the inside work, all the outside work he used to do, and take a care of him. It’s pretty busy.
I really cut down on my social life because I try not to leave him at home for long periods of time. I have two really close girlfriends here that make sure I get out sometimes with them. We go to lunch and I bring him with me and they’re very OK with that. That’s pretty much how I get my time. I’ve got another friend’s husband will come and stay at the house with him so I can go out.
I try not to complain because it doesn’t do any good and I don’t want him to feel bad. You deal with what you have in front of you and you make the best of everyday. I’m still happy to just have him.
I’ve learned that I can step up to the plate when I have to. I’ve learned that patience is something you have to work on all the time. I’ve learned family and friends are invaluable as far as going helping you and being there for you when you need them… family and friends: if you don’t have that, you got nothing.”
Deb Donofrio, 59, is a caregiver for her husband, Chuck, who has early onset Alzheimer’s disease.
“He started acting really different. He kept trying to go to work, making little mistakes, and got lost driving to work.
I gave up teaching yoga to children. Now I’m only teaching one day a week. I have a person come in for four hours so I can teach my classes. The rest of the class I have at home.
It’s hard at first, but the one thing I do get to do now is help other people. A lot of people call me, women especially, who have a husband who got diagnosed, and I try to help them if I can.
Because I do still teach a little bit of yoga, I get my friends to come in and support me. I have a friend who comes over and gives us massages and cuts my hair. It’s kind of like they say: It takes a village. We try and support each other within our community.
You don’t take as good a care of yourself as you should but I meditate. Staying in the present is essential in this disease. That helps. My yoga has really helped me to stay calm and be still and be thankful and grateful.
I have a better ability to start off the day correctly. If I wake up in the morning, in a bad mood, I’ve got to figure out how to fix it before I deal with him. You can do it if you put your mind to it. You have to not look at the sides that make you mad or angry. You have to look at the fact that you married him, you love him and now you have an opportunity to show him.”
*Interviews have been condensed and edited.
from Healthy Living - The Huffington Post http://ift.tt/1EcSTaK
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Introducing 11 people who are delivering care to sick partners every day with profound compassion, often putting their own needs on hold. During National Family Caregivers Month, we want to pay tribute to these unsung heroes, who are selflessly meeting the needs of their partners. We hope their stories will inspire you. Certainly they've inspired us.
These stories were compiled by Rebecca Adams and Yagana Shah.
Dennis Anfuso, 59, is a caregiver for his wife Linda, who has muscular dystrophy.
"Every day we play it by ear. One of the reasons that it worked so well with me being her caregiver was that if she had a really bad night and was unable to sleep, I would just stay up with her. Then we’d go to sleep together in the morning. The days when she’s not up to it, she just doesn’t get up. When she first got diagnosed, they didn’t think she’d live past her 30s. She just turned 58. I think that says a lot. Her theory is, if you have a reason to wake up in the morning, you struggle to wake up.
At night, I’m illustrating books and working until 4 or 5 in the morning. I had to give up being a full-time artist, because you have to travel and meet people and do a lot of shmoozing. I belong to a group called the International Wizard of Oz fan club. Through them, I’ve met a lot of other people, some of whom write books but don’t have an illustrator. They hire me to illustrate their books for them. I honestly have always ended up putting myself last on the list of people to take care of. It’s not right, but you just end up doing it because everything else seems like a bigger priority. I just figure that when I’m doing my art work, that’s my ‘me’ time and that is the thing that makes me feel really good.
One important thing I learned is that you really can do just about anything you set your mind to. When she first got sick, I had never even been around handicapped people. But if you just believe that things have to get done, you just do them. Then you find out it wasn’t as bad as you thought it was going to be and you feel good because you finished it. You learn as you go. That’s kind of what life’s all about.
So many people don’t realize that we were given a gift. Being given a time limit on Linda’s life made us enjoy every single day, because tomorrow is not guaranteed. I know so many people who wrongly believe that, because they’re not sick, tomorrow is guaranteed -- and it isn’t. You step out the door, you can get hit by a car; you could have a stroke. If you put off pleasure and don’t do things today, there’s no guarantee that there is a tomorrow. We learned that early and it’s served us really well. Whenever we make a few extra bucks, we go out and enjoy it. There’s no big savings for the future."
Charles Gray, 88, is a caregiver for his wife Grace, who has dementia.
"On a daily basis, I do everything. I’m a 100 percent caregiver. She’s a very needy person. I don’t mean that as a negative, but she needs me all of the time. Every minute and every second of every day I have to be with her. That’s a strain on me.
My whole life I’ve been an artist and I’ve given up my art work, of course. I can’t do that at all. I feel bad about that, of course. It’s just that I can’t get away; I can’t concentrate on it now. Art requires 1000 percent concentration, so I just can’t do it anymore.
I really don’t take care of myself. I read magazines. We get The New Yorker and Time magazine, and I find those short articles quite nice, because while I’m sitting with her and she’s watching television, I can drift off into a story. That helps me get away from it, but that’s as far as I can get. I don’t resent being a caregiver. I do it out of love, because we’ve been married for 67 years. It’s what I want to do.
She comes first in the house, and the whole family knows that. We discourage anyone from telling her that she has dementia, because that’s only cruelty. She said today, ‘Where is my husband?’ so I sat down and put my arm around her and tried to explain that he’s right here and he’s been here for years. As the days go by, she gets worse and worse. That's all I can say; that’s all I know. I can see it happening everyday.
I haven’t looked for any [support groups]. I don’t think I can find anyone in the exact same situation that I’m in and so what if I did? It’s not going to help me. And when would I talk to them? My life turned out to be a caregiver, but I’m not a remarkable person. I’m just a person who does it, that’s all. There’s nothing remarkable about me."
Angel Trimm, 25, is a caregiver for her husband, Adam, who has Post-traumatic stress disorder (PTSD).
“He was deployed to Afghanistan in 2010 and when he got back he was diagnosed with 100 percent PTSD. So on top of caring of three children, I had to take care of him.
He lost all the support from all his family, which is why we moved to be where my family was from. Then we moved to Tennessee and my family was just as judgmental and not understanding of the PTSD. There’s a real lack of support there. No family. No friends. We stay in. We’re just a tight knit family. We don’t go out to stores. We order our stuff online because of the stress put on him and us when we go out with his condition.
I suffer from PTSD myself from sexual abuse myself in childhood. Our whole family is kind of a chaotic mess but in all we’re pretty sane and we handle everything well. The kids -- they’re very knowledgeable of it. They know the condition.
I don’t know how I manage, actually. I take it day by day. I’m a part of a Facebook group of veteran’s wives, families of victims of brain injury, those types of things. I read a lot, get on the news and stuff.
I’m an aspiring photographer why is part of why we moved to Colorado. I was planning furthering my education, but that had to be put on the back burner. I’ve become obsessed with the mountains out here, nature, just anything outside.
I’ve been practicing yoga for about seven years and that’s a good way to get a good peace of mind. I do meditation. Have quiet time. Have a long shower. We live across the street from the mountains where I can go take a job and clear my mind. Some days are better than others.
I had a child when I was 15. I was picked on in high school. I always felt I wasn’t good enough, or strong enough to do any of this. We go to VA counseling and talking to the counselor gives me a better perspective of how strong I really am and how much I really do. Sometimes it’s hard for me to see.”
Jerryl Lynn Rubin, 65, is a caregiver for her partner, Amanda, who has non-Hodgkins lymphoma.
“It’s more common to have people of my generation take care of their parents. We’ve [my partner and I] been together about 11 years.
We went to England and she got weaker and weaker throughout the trip. Once we got home, the diagnosis was made of stage 3 non-Hodgkins lymphoma. We were just going along with our lives. I didn’t know how it would be, because this kind of cancer, they use the word “incurable.”
She was more susceptible to germs. The house needed to be particularly clean, visitors had to be checked. We were used to going out together to movies and shows, but even when she wasn’t tired, she wasn’t supposed to be around people that were sick.
You can’t really plan for the future together and count on it. That is hard. Sometimes I would get resentful like all caregivers, and I’ve had many times when I got angry over small things, because I was drained by everything. I had certain things I needed to do for sustaining myself, like journaling and working out. Sometimes I just had to leave the space to get my head on straight, to get balance and perspective.
The positive in my story is it dramatically improved our relationship. She opened up a lot about her feelings about the illness, her feelings about death and life. The experience of the caregiver is dramatically different from the patient. One just needs to survive. The other is, “How do I support this person and hold onto myself?”
One of the insights I had was that no matter whether you’re getting treatment that day or not, life is still happening. Each day you want to find some vitality and find some fun -- find some meaning, even if it’s during treatment. It’s something I’ve never been conscious of. You want to make even a hard day as positive as you can no matter what it takes, because you don’t know how long you’ll have each other.
Because of the sensitivity of having a same-same sex relationship, not all our family supported our relationship. But one positive gain was even if their religious beliefs included prejudice against same-sex relationships, watching us operate as a couple changed the feelings of some of them. It was love in action."
Daphne Hooder, 80, is a caregiver for her husband, Bob, who has Alzheimer’s disease.
“My husband started acting not himself, subtle little signs about 8 years ago. In 2008 he was diagnosed with Alzheimer’s. I kept him home for 5 years. The first couple of years it wasn’t bad, he just was very forgetful. Gradually, it got worse.
In June 2013, I found him on the bathroom floor. I realized I couldn’t do it anymore. Now he’s in a nursing home. I visit him twice about twice a week.
The last couple years I could not leave him alone. It was a stretch financially, but I never felt resentful. I felt like he deserved the best care I could give him.
I went to several Alzheimer’s support groups, which were very helpful. I think it’s important to get up and move if you can leave your love one with somebody.
Me, I always made sure I went to the beauty shop because I’m 80. I’ve been dyeing my hair since I was mid-50s or earlier, and I just did not want to turn into this white-haired old lady! I made sure I had enough money to go to the beauty shop and have my hair dyed and taken care of. That was important to me -- that I looked OK.
I don’t feel like I deserve any accolades. I did what any mother or wife would do. I just feel like you do what you have to do. I realize this is the new reality. He’s where he is and he’s getting new care.”
Larry Bocchiere, 63, was a caregiver for his wife Deborah, who died of emphysema in 2013.
"Spousal caregivers lose a lot. They lose their best friend, their lover, half of the team that raises the kids and keeps up the house income.
When we first got the diagnosis, it was real tough. It was like a feeling of emptiness, of bleakness. But you learn to put one foot in front of the other and keep going. Truthfully, it wasn’t until the last two or three years when I felt like it was an abyss, where I had truly lost my partner. The love was still there. I was with Deb for 47 years, so that never changed. But there did come a point where I was a tired, she was tired and we knew that we had really lost what we once had and we were just in a holding pattern.
I look back at it now, and I say, ‘How the hell did I ever do it?’ I don’t know. You do what you have to do, especially when you’re dedicated to someone. I don’t say that caregivers are superheroes, but they go above and beyond what normal people do. They’ll get up early to get the house ready, take care of their loved one, go to work, come back, cook meals, go shopping, take the kids where they have to go. By the end of the day, you don’t want to do much except get in bed.
That’s really why I preach self care. You have to do something, because if you don’t, you will literally whither and die. I was lucky enough to have a face-to-face support group. That's really what helped save me. Another thing that happens to caregivers: They lose sight of their own health. I turned into a stress eater. Since my wife passed, I lost 91 pounds. I used to sit and eat all night long. I’d sit on the couch, get up, have something, get up. It was all from stress.
I’ve learned that I’m human. I’ve learned that you need to take care of yourself while you’re taking care of someone else and you need to maintain a life. You still have to maintain something for you. You can’t just be all involved and absorbed in simply caregiving or when the caregiving ends, you’ll be in a lot of trouble. Reach out and get a support group. Nobody can do it alone."
Bruce Friedman, 58, is a caregiver for his wife, Melinda, who has early onset Alzheimer’s disease.
“I had to place my wife -- a former lawyer, and a wife and mother to our sons -- in a memory care facility. [Caregiving] starts to take up more mental energy and it starts to just wear on you. I got to a point where I needed to get healthy and stay healthy for her sake and mine.
I started getting up at early hours, walking outside or on the treadmill. I eventually made it a priority because i realized I needed to be healthy to take care of her. It helped with stress and worry -- you feel like you’ve got more energy to deal with caregiving responsibilities. You have to carve out me time to avoid becoming burned out.
Burnout is very common. If you’re burned out you’re at your wits end, you lose patience, and patience is the most important part of being a caregiver. Find a way to get respite. It’s hard.
Trying to balance my caregiving role, my work life as a divorce lawyer and being both father and mother to my sons has been the most challenging experience in my life. I learned empathy and patience that I probably didn’t have as much of when I was younger and more driven in my career. It has definitely made me a better spouse, a better person, a better parent, and I guess I learned how deeply I love my wife. I came to the realization that maybe people sometimes take for granted, over the years, their marriage. Thee relationship changes for sure. The love morphs into different things. It’s still strong, but it’s different. There’s no way it can’t be.
I have slowly but surely become more of an advocate about this disease, particularly its impact on younger families, and even wrote a letter to the editor for the St. Louis Post-Dispatch, my first and only time, which was printed. The topic was the oncoming avalanche of Alzheimer’s disease.
Although my wife is now in a facility, my role is now that of COO of her care."
Terri Corcoran, 64, is a caregiver for her husband Vince, who has Fragile X-associated Tremor/Ataxia Syndrome (FXTAS).
"We were married over 15 years ago, and he wasn’t right from the beginning, but I didn’t realize that. I actually didn’t need to care from him full time until 2004, which was five years into the marriage. By then, he was really disabled mentally and physically and couldn’t be left alone. My husband was brilliant; he was a PhD laser scientist. He turned 80 this week and he’s still physically healthy -- he’s just got a non-functioning brain.
I do everything for him. In the beginning, it was putting all of the handicapped accessories on the house, redoing the bathrooms, getting stair lifts. I was helping him shower and brush his teeth and helping him walk. By 2005, it got totally impossible for me to handle it on my own. He was falling down a lot, because he didn’t understand that he needed help to get up and he didn’t have balance.
I started getting some health aides, because I was just breaking down and burning out. I still have to clean my husband up in the morning, because he’s totally incontinent. I have to puree all of his food, so I have that routine down. It’s just doing everything. The food and the laundry and the doctors visits and just keeping that straight. Plus, the house and the finances. Everything’s on me.
I try to find time every day for myself, my own quiet time. I do go out to lunch a lot with friends. I see my daughter and my grandkids once a week. I work out every day in the afternoon when the aid goes home before dinner.
I’ve just been so heartbroken by the whole thing. As far as myself, I don’t feel like I want to be doing things without my husband. I thought we would travel together and just do nothing together. We are so compatible, and nothing can replace that. So it’s not like I feel like I need to travel or I need to do this or that, because I just don’t want to do it without him. I sacrifice stanity sometimes, but I want to do this. I’ve been bound and determined that we were going to have some kind of a marriage. He was going to get good care, and our marriage was going to mean something.
When I look at the past 15 years and what I’ve accomplished, it’s just amazing that I actually got through it. It makes you a more compassionate person. I’ve been able to be a better friend to other people and hopefully a better mother and grandmother."
Dennis Marasco, 60, is a caregiver for his wife Elaine, who has Alzheimer’s disease.
"I kept her home at first. I’d leave for work for a few hours, come back at lunchtime and take her into the office. But in 2011, she went to the hospital for an infection and the doctors told me, ‘You’re not going to be able to lift her yourself; you’re just not going to be able to handle this,’ so I took her to a nursing home nearby. We were still taking her home two or three days a week for dinner, and she would come over on the weekend and sit outside.
She’s been at the nursing home for three and a half years, but they just eventually forget how to walk. You know, the mind just doesn’t tell them what to do. At some point, sadly, she’ll probably stop eating. Now she’s back to being chair-ridden, so it’s a little more difficult to take her home but not impossible. We still get her home on Saturdays and Sundays to sit with us.
I have breakfast with her every morning, and I visit her three or four times a day. I’ll sit there with the newspaper and update her on current events and bring in pictures or videos of the kids when they were small. I have her hair done once a week, so I sit with her while she does that.
On the physical side of it, I don’t have to change her anymore; I don’t have to dress her or get her ready. I may pitch in here or there with that, but it’s not like when she was home and I had to do it all, including give her the meds. Giving the meds can be a five minute deal or it can be an hour deal, depending on what her mood is.
You don’t realize what your responses to a situation are until you’re put into the situation. I feel good about myself. I’ve taken on this responsibility. I don’t like the kids to feel any obligation, so I never put them in the position where, ‘If you don’t come over, mom can’t come home.’ It’s the responsibility of the spouse to be there for them. It’s not what I figured I’d be doing in my 50s. I don’t think anybody wishes that. It very simply could’ve been cancer or some other type of disease -- this is just what we were dealt. My point is, this is not any worse than any other disease that somebody else is going through and I’m not special. You just have to look at the situation, decide what needs to be done and go forward and do it."
Bonnie Little, 60, is a caregiver for her husband Harry, who has Parkinson’s disease.
“He’s been sick about three-and-a-half years. We’ve been married 30 years. He’s a Vietnam vet so he has health conditions related to agent orange exposure. It started a few years back where his driving wasn’t right and things weren’t just going how they should have been -- that’s when he got diagnosed with Parkinson’s.
I had to leave my job to be home to take care of him. I was a licensed real estate broker.
Now I have to do all the inside work, all the outside work he used to do, and take a care of him. It’s pretty busy.
I really cut down on my social life because I try not to leave him at home for long periods of time. I have two really close girlfriends here that make sure I get out sometimes with them. We go to lunch and I bring him with me and they’re very OK with that. That’s pretty much how I get my time. I’ve got another friend’s husband will come and stay at the house with him so I can go out.
I try not to complain because it doesn’t do any good and I don’t want him to feel bad. You deal with what you have in front of you and you make the best of everyday. I’m still happy to just have him.
I’ve learned that I can step up to the plate when I have to. I’ve learned that patience is something you have to work on all the time. I’ve learned family and friends are invaluable as far as going helping you and being there for you when you need them… family and friends: if you don’t have that, you got nothing.”
Deb Donofrio, 59, is a caregiver for her husband, Chuck, who has early onset Alzheimer’s disease.
“He started acting really different. He kept trying to go to work, making little mistakes, and got lost driving to work.
I gave up teaching yoga to children. Now I’m only teaching one day a week. I have a person come in for four hours so I can teach my classes. The rest of the class I have at home.
It’s hard at first, but the one thing I do get to do now is help other people. A lot of people call me, women especially, who have a husband who got diagnosed, and I try to help them if I can.
Because I do still teach a little bit of yoga, I get my friends to come in and support me. I have a friend who comes over and gives us massages and cuts my hair. It’s kind of like they say: It takes a village. We try and support each other within our community.
You don’t take as good a care of yourself as you should but I meditate. Staying in the present is essential in this disease. That helps. My yoga has really helped me to stay calm and be still and be thankful and grateful.
I have a better ability to start off the day correctly. If I wake up in the morning, in a bad mood, I’ve got to figure out how to fix it before I deal with him. You can do it if you put your mind to it. You have to not look at the sides that make you mad or angry. You have to look at the fact that you married him, you love him and now you have an opportunity to show him.”
*Interviews have been condensed and edited.
from Healthy Living - The Huffington Post http://ift.tt/1EcSTaK
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