Tag Archives: caregivers

The Gift of Receiving

30 Saturday Dec 2017

Posted by in bipolar, caregivers, hope, mental illness, relationships, schizophrenia, Uncategorized

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“These chocolates are so good. So good. Here, try one.” Every time I taste something good, whether it is salmon or a chocolate layered cake, I want my husband to try it. I want him to experience the same pleasure that I am. He will frequently say, “No thanks,” and I will say, “Please.” At that point, he usually gives in and tries what I am offering to him.

The scenario I just described is frequent in our house but is only one example of how I try to encourage my husband to experience things that I think he will enjoy. I often feel as if I take up too much space in our home, relationship and lives with my mental illness and my newly diagnosed health problems that require a strict diet.

Those of us who receive a lot of care from another person need to feel as if we can give something back. My husband falls into the category of a giver. Because he is a giver, his needs, wants, and desires are frequently at the back of the line. It gives me great pleasure to see my husband happy and to see him getting the things he wants.

The problem is, my husband will often turn down gifts and gestures of kindness. He will say, “No thank you.” I have told him over the years that if he is going to do so much for so many people he needs to allow others to give back to him. Most of us find a certain joy in giving to others and if my husband always gives but never receives people (me included) can feel left out of that joyous cycle.

I think caregivers in particular need to learn to accept from others, and particularly the people they are caring for. As I wrote earlier, I often feel like the focus or center of our lives revolves around me. Anything I can do to give back to my husband, to make him the focus once in a while pleases me, and it also helps alleviate the guilt of all the things we have to say no to because I am having symptoms.

I feel like there are so many disappointing times when my husband is looking forward to something and because of me, we will have to cancel at the last minute. If I can buy him things that he loves or would enjoy, have him try things, get him to spend time with his best friend, etc. then I feel like the scale is not so lopsided in my direction.

The old saying goes, “It is better to give than receive.” I think there is some truth to that statement, and for those of us who receive much, it is important that we can give and give generously in return.

 

 

We All Need Someone in Our Corner: Dealing With Doctors

14 Thursday Dec 2017

Posted by in caregivers, mental illness, relationships, schizophrenia, stigma, Uncategorized

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At several different times in my life, I have worked with the elderly. Twice I have worked in nursing homes and once I worked in a full-service retirement community (independent living, skilled living, and nursing home). One of the things I heard from staff in all of those places was the difference it made in care if family members visited and were involved. It seems that if the family is present in people’s lives while they are receiving care and treatment, then the care they receive will be more personal, more attentive and just overall better. It is hard to say, why exactly this scenario exists, but it does seem to exist.

I think the same is true for people with a severe mental illness both inside and outside of institutions. When I have spent time in a psych ward, I have always had family visit, and for the most part, I have been treated fairly well (I have a few disturbing stories, but not many). Outside of psych wards, though, I always bring my husband with me to various doctors appointments, and I think it makes a huge difference.

I went to the emergency room twice in 2017, and the doctors and nurses all knew I had schizophrenia. I always tell doctors (dentists, too) that I have schizophrenia when they are treating me. I tell them this because I am terrified of medical professionals and I want them to show me some level of patience and compassion. The stigma involved in a diagnosis of schizophrenia is real, though and many medical professionals have their own biases toward the illness.

One doctor in the E.R. asked me if I take my medications. “Religiously,” I answered. He said, “Good because most of the people I see with schizophrenia don’t.” I can’t blame the E.R. doctors in Southern California for being a little hesitant about people with a severe mental illness because they are on the front lines of medical care for the homeless (many of who are mentally ill and are without treatment).

I went to the cancer center yesterday to have my diagnostic mammogram (I won’t write the whole ordeal of this again, but I will say in the past year, I have had three mammograms, several ultrasounds, two biopsies, and an MRI). I had a fourteen-centimeter mass in my right breast. I am happy to report that the mass has completely disappeared from view on the mammogram and the last test I have to have (if I get the all clear) is an MRI in February. Anyway, the doctor who sees me at the cancer center came out and asked about my husband, and told me to tell him hello. She remembers that I always bring my husband to my appointments and the first time I saw her and told her I have schizophrenia, she allowed my husband in the room for all my tests.

The doctors at the cancer center and all of the doctors that I have to see are so kind and patient with me, and it makes a huge difference in how I respond and feel about medical treatment.

I wish everyone with a severe mental illness could have an advocate to go to the doctor with them. Not everyone can express how uncomfortable and frightening visiting doctors can be. Even drawing blood which is common for those of us on antipsychotics can be frightening to some people.  We all need someone on our side and on our team, and my experience tells me that having someone in our corner makes a huge difference in how we are treated and the type of care we receive.

Whose Voice Should Be On the Front Lines?

03 Sunday Dec 2017

Posted by in bipolar, caregivers, mental illness, relationships, schizophrenia, stigma, Uncategorized

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I have frequently written about caregivers and their role in helping, assisting, loving, organizing treatment, taking care of finances, etc. for those of us with a disability (whether it is schizophrenia, autism, or any number of other disabilities). Caregivers are essential, and I know they need their space, their groups, and their support, and they have every right to tell their stories.

Here is the thing though, and I say this with caution (as not to offend any caregivers): we have our voice, and many of us would prefer that the public learn about our conditions from our perspective and not always the perspective of the caregiver.

Recently on Facebook, a freelance writer who I am in contact with on social media, accepted a job writing about schizophrenia, from an online site (she doesn’t have schizophrenia). I know at least a dozen writers with schizophrenia who are trying desperately to make a living doing something they can do (because there are many jobs they can’t do) and this freelancer is not only taking a job from “us” but is going to be “our voice” as well.

I am a little tired of the story of parents of a child with schizophrenia turning up in the New York Times, or other prominent newspapers or magazines, (anywhere actually) because inevitably it is a story about how “awful” it is to have a child with schizophrenia. We have all read the story of the sad “before” – great athlete, great student, popular, outgoing, to the “after” – withdrawn, unable to read or attend classes, etc. I for one, am tired of that story – extremely tired. There is another story to be told. There are thousands of other stories to be told.

I think there is a place for caregivers, and their stories, but I think the ones who should be given precedence to tell the story of schizophrenia, or autism, or anxiety, or physical disability, are those who live it. Our stories, our voice.

I don’t want to see another Hollywood script about the creepy killer having schizophrenia. I don’t want to see another newscaster or journalist speculate about the possibility of a mass shooter being mentally ill, and I don’t want to read another story by a parent of someone with a disability about how that disability is lived out.

I want those of us with schizophrenia to define schizophrenia – not Hollywood, not the media, not parents or siblings. There are huge misconceptions about schizophrenia held by the majority of the public; I want to be on the front lines dispelling those misconceptions and myths.

I am thankful for every single person who cares and is an ally to anyone who has a mental or physical disability. It is time, though to allow us to speak for ourselves. And won’t that speaking, that writing, that telling be one of the most powerful tools in getting rid of stigma, ignorance, and all the other negative perceptions? Besides, allowing us to do and get a paycheck for the jobs we are capable of doing, it also lets us define our lives and what they look like – something people have been doing for us (incorrectly) throughout history.

A Not So Gentle Reminder

14 Tuesday Nov 2017

Posted by in bipolar, caregivers, mental illness, relationships, schizophrenia, Uncategorized

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Last night my husband and I had to run some errands. One errand was picking up my medications, but there were several others as well – things that just couldn’t wait. I haven’t been on a regular sleep schedule (as you can see I am up at 2 AM). So, I ended up taking my medications at 4:30 AM yesterday morning which meant I needed to take them again at 4:30 PM. Like many people, I need to take my pills with food for them to be the most potent. It was past 5:00 PM when we got to the grocery store to do our shopping. I was irritated, hungry and I wanted to get home to eat and take my medication. I don’t like getting off a schedule with my meds.

When we go to the grocery store, I am very fast. I go quickly to the things I need and then I am ready to go. My husband likes to go down every aisle and look at everything. Although we are partnered well with most things in life, our grocery store shopping habits don’t match well together. Normally, this doesn’t bother either one of us too much, but I was cranky.

After finding everything on the list, I went to find my husband. He was in the spice aisle talking to a woman. The woman was asking him about spices. I thought she was drunk. My husband (being one of the nicest people you will ever meet) was helping this woman find chicken seasoning. Then she asked him to help her find sea salt. I was standing behind the two of them with my hand on my forehead fuming. I was so irritated with my husband. Did he have to help everyone even when he knows I need to get home and eat and take my medications?

My husband looked over and saw my irritated and angry face and said goodbye to the woman in the spice aisle. I said, “I need to get home and take my meds!” My husband said, “Okay. Okay. I didn’t realize it was an emergency. Let’s go.”

When we got home, and we were putting away the groceries my husband said, “The woman in the spice aisle was legally blind, she couldn’t read the labels.” That is when my heart sank, and I felt a burn of shame. I was so worried about myself and my needs; I couldn’t even relax and allow my husband to help someone who was visually impaired find and get the things she needed. It reminded me that I am often too quick to make judgments about people just like they are too quick to make them about me. I always want people to slow down, listen and learn with me, but I need to do the same for others.

To make matters worse, my husband, being rushed by me at the grocery store didn’t get to buy some of his favorite foods for this week. My impatience and concern for myself kept the person I love the most from having the things he enjoys.

It reminds me of the lyrics of a Kinks song that I loved in college, “Stop. Hold on. Stay in control.”

I guess I needed a few lessons yesterday, and I learned them the hard way.

In Defense of Caregivers

10 Thursday Mar 2016

Posted by in mental illness, schizophrenia, Uncategorized, writing

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When I was in school, I wrote an essay about a time when I was psychotic for six months. You can read the essay here.

When the teacher commented on the essay, she asked why my husband would allow my psychosis to go on for six months.

I found her line of questioning judgmental. Did she think that she would be able to make a better decision that would make the time that I was psychotic shorter? At the time, I told her that my husband and I had just moved to a new city and that he had just started a new job. She pushed her questions further and asked if I was alone all day and if my husband’s focus was on his new job.

I dropped out of the class shortly after that. I didn’t drop out because I felt the teacher was judging my husband’s response to my illness, but I have to admit I did find her critiques and input less valuable after those questions. Why did her questions bother me?

My husband has lived with my illness and me for eighteen years. No one on the planet deals with my illness as well as he does. No other person can talk me out of a paranoid episode (not always but sometimes). No one loves me more than he does. The very insinuation that my husband didn’t make the right choices for me or made me suffer much longer than necessary makes me angry.

If doctors don’t always know what to do with me, how is my husband supposed to know? If I had to put my care in the hands of anyone it would be my husband. Not only does he know me best, but he also wants the best for me.

I am sure that caregivers get second guessed by people all the time, and it is so unjust and unfair of people to think they would know a better course of action than the person closest to the person with the illness.

My husband feels guilty and blames himself for not doing more during those six months. I am sure all caregivers have experienced times of guilt or times when they blamed themselves for not responding this way or that way.

I’m asking everyone to think before you question a caregiver’s choice of action. You may think you would do something better or differently, but how do you know? How do you know what you would do if you lived for a day in our skin with all the same circumstances?

It doesn’t matter if my husband left me alone every day or if preoccupation existed over his new job. It isn’t his fault that I have schizophrenia, and that it is often difficult to treat. It wouldn’t matter if my husband went on a trip and left me to fend for myself – schizophrenia and its symptoms still aren’t his fault.

I’d like to tell that teacher that hinted that my husband should have done something differently that most people wouldn’t have stuck around as long as he has and retained his compassion, empathy and sense of humor. My husband is a rare person, and no one gets to doubt how he chooses to care for the person he loves the most – which I know is me.

Having A Mental Illness But Thinking Of Others

11 Friday Dec 2015

Posted by in bipolar, hope, mental illness, relationships, schizophrenia, Uncategorized

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I took three coats out of my closet last night. My husband is going to take them to the church where he volunteers to feed the homeless and low income. I feel good knowing that I am giving a gift, even if it is a small one, to someone else today.

It is good to get out of my own head. It is good to stop thinking about my own problems and think about others for a while. Having a disability is not a competition. It is not, “My life is harder than yours, or they have it worse than me.” The important thing to remember is that as humans we all struggle. It isn’t easy for any of us.

And although it isn’t a competition, when I think of the lives of others – people who have survived war and lost limbs, people who have survived a fire and are badly burned, people who have a terminal illness, people who have no shelter this winter, people who are hungry, people who are living in war torn areas, and the list goes on of ways that people are suffering- I think to myself, “I will take my struggles over theirs.”

There is an old story about a group of people throwing all their problems into the center of the room, and each person being required to pick up someone’s problems and make them their own. All of the people in the group chose their own problems instead of trying to live with someone else’s problems.

People look at us and don’t want our problems, and we in turn look at them, and don’t want theirs.

I think it is important especially for those of us with a mental illness, to consciously think of the struggles of others. It isn’t that I think we are all narcissists and thinking only of ourselves, but we can spend a whole lot of time looking for our symptoms to manifest – changes in sleep, weight loss, weight gain, changes in thought patterns, anxiety, depression, etc.

It is easy to get lost in ourselves and our illness. Insight into our illness is important, but I have found that when I am concentrating on someone else, I suffer from fewer symptoms. When I am focused inward, I notice every small change in my well-being. The truth is I am healthier and happier when I am not so self-focused.

Let’s all give ourselves a holiday gift this year – let’s give some coats or sweaters we don’t use to a homeless shelter, let’s buy a few toys for foster kids, let’s make soup for someone battling an illness, let’s call a friend who recently lost a pet, or a job. Let’s reach out and try to ease, if only slightly, the suffering of someone else.

The gift you receive in return may be a little less of your own suffering. We are important to one another – everyone benefits from generosity, empathy, compassion and care. I think if we focus on others for a short time every day, we can make life better – that is such important work – the most important because it is love and we all know that love can get into the cracks and heal most wounds. Let’s be the ointment others need. It’s good for us, it’s good for them.

Tough Stuff

18 Friday Sep 2015

Posted by in articles I wrote, caregivers, mental illness, schizophrenia, writing

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This is the blog of a caregiver whose twenty-one year old son has schizophrenia. I love following this blog because the woman who writes it, writes well, posts some interesting research on schizophrenia, and has a very different perspective than my own.

Her post yesterday (the one I linked to above) made me feel a wide range of emotions. I felt angry at her for suggesting her son’s life wasn’t of value without her there to make sure he was okay (I know she is worried that her son will not be understood, cared for, and that life might be cruel to him without her, but as someone who also lives with the disease her son does, this was a difficult read).

Then I thought about myself. How many nights, with my head resting on my husband’s chest, have I whispered, “Please tell me that I will die before you. I just want to go before you.”  My husband’s response is always the same when I say this, “You are so selfish. Why do you think I would do better than you, if I were left alone?”  Usually, I give him the reasons I think he would do better, but to be honest, if I knew I was dying a couple years in advance, I would spend the time I had left trying to find him a partner. I really don’t want either one of us to be left alone. It would be hard to lose your best friend, especially a best friend you spend every day with and curl up with at night.

I frequently think and talk about death. Here is an article I wrote (under my maiden name) about my second experience with a breast cancer scare (to my friends who have actually had breast cancer, I hope you will forgive me for writing about how freaked out I get just thinking I have it).

I don’t know what life would be like for that blogger’s son if she dies before him. I don’t know what life would be like for me if my husband passes before me. I know I want to believe that in both situations everything, given enough time, would somehow, and in some way, be okay.

It is a difficult situation to try and grapple with. The thing about having a mental illness is you can’t always choose what you’ll spend your time thinking about. It’s not just me though I bet every caregiver has run similar scenarios through their mind.

There is tough stuff and there is really tough stuff. This whole topic is the latter. Having the thought that your loved one might be better off to die before you, is probably a common and guilt inducing thought for many caregivers. Just know you can say it out loud in certain places no matter how terrible it sounds. I have schizophrenia and I am capable of being honest about what life would look like without my muscle man, my Hercules, my Superman, my love. I’m not sure I’d be able to do it.

I don’t know. I just don’t know.

Conversations with Customer Service re: Children’s Mental Patient Halloween Costumes

04 Friday Sep 2015

Posted by in bipolar, caregivers, hope, mental illness, schizophrenia, stigma

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If you are interested in making a difference in terms of stigma, please consider writing a letter or calling one of the companies that are making Halloween costumes of “mental patients” I have linked to a blog I follow (and love) of a caregiver who is a wonderful advocate for mental health issues. She is making a difference – we can too.

Source: Conversations with Customer Service re: Children’s Mental Patient Halloween Costumes

Rotten Tomatoes: Anyone else Would have told me to shut up

03 Monday Aug 2015

Posted by in caregivers, mental illness, schizophrenia, writing

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To wrap up our Sunday, my husband and I warmed up leftover broccoli, and edamame. We took out some leftover salad, grabbed the chips and hummus, sliced up some peaches and grabbed the last of the cherries, and cut up some tomatoes. We put everything on two trays and headed for our bedroom to watch a couple of episodes of Blue Bloods.

I ate a tomato that my husband had lightly salted. It tasted funny, kind of like dirt. I knew the tomatoes were old, and that my husband had to cut off the bad spots, but I thought they looked good. After I finished the tomato, I said, “The tomatoes taste kind of moldy. I don’t want anymore.”

My husband said, “If they are moldy, let’s just throw them away.”

“Well, I don’t know if they are all moldy, or if I just got a bad piece.”

He ate a slice and said, “Yes, it tastes moldy.”

“Am I going to get sick from eating that tomato?” I asked him.

“No.” He said.

We started to watch the detectives interview someone on the television screen.

“Do you think I am going to get sick from eating that moldy tomato?” I asked.

“If you get sick, we will both get sick, but no. No. I don’t think you will get sick.”

There was a chase scene on the screen.

“Are you sure I won’t get sick?” I asked

“You are not going to get sick.” My husband said.

“Are you sure?” I asked.

“Yes, I am sure.” He said.

“Okay. Thanks.” I said.

“You’ll be fine.” He said.

After eating our mixed and matched dinner, we put the trays, plates, bowls, chips and hummus away. When we came back to our bedroom, we stretched out on the bed and I laid my head on my husband’s chest – the way I end most evenings, in the comfort of my true love’s arms.

He could have told me to shut up about the tomatoes. He could have told me to stop worrying about it and watch the show. Out of frustration, he could have said, “Yes, you will probably get sick.” But he didn’t. He allowed me to work through my fears, and he worked through them with me.

He is rock steady, he loves and respects me.

I’m not Cinderella, and he is not Prince Charming, but I have my own fairytale – one with mental illness, and the best guy to handle my symptoms sticks with me for years, walking me through the thorny areas of my mind, giving me comfort, giving me safety, giving me shelter, a place to call home.

Learning to Accept the Different Experiences with Mental Illness

05 Sunday Jul 2015

Posted by in bipolar, caregivers, mental illness, schizophrenia

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About six months ago I was one of ten winners in a memoir writing contest.  Our memoirs were selected to be performed by actors on stage.  Last week was the performance.

Mine was the second piece to be read. It was about living with schizophrenia and how I have a good life despite my illness.

The second to last piece was written by a woman whose mother had schizophrenia. I don’t know why, but every time I try to get out there with my story about how schizophrenia is not what people think it is, and bring my strengths and my success to the forefront, someone else has a story about how hard their life has been due to having a parent with schizophrenia.  This has happened in all of my writing groups, and now it has happened on stage.

I have no doubt that people my age who had parents with schizophrenia had it tough, because when they were children, the treatments for schizophrenia were not what they are today. No doubt it was difficult to live with a parent with delusions, and hallucinations.

I feel like I am working in the opposite direction of most of the people who grew up with a parent who had schizophrenia though. I am trying to get people to understand the illness, to have empathy for the people who suffer from it, to see our humanity and our strengths, and to talk openly about our daily struggles. The people writing about their parents are trying to get support, understanding and empathy for their own experience, and their experience is often a painful one due to the illness of their parent.

I once said in a writer’s workshop, “I don’t know what kind of parent I would have been.” A woman with a mother who had schizophrenia said, “Well, you are about to find out.” She said it with such anger and force that I was taken back. Are any two mothers really alike? How did she know I would be like her mother?  She was obviously projecting her anger at her mother on to me.

I have anger of my own. I get tired of being alongside people who want to say how tough it is to have a relative with schizophrenia.  I want to shout, “What about the person who has/had the illness? Do you think they chose to have it? Do you think they would have traded a healthy mind for a mind with a disease? Do you think they had hallucinations and delusions on purpose?

I know this isn’t the right attitude for an artist or for an advocate of the mentally ill and their families.

As someone who loves to write, I want all people to be able to tell their stories, and I think everyone’s story is unique and important. I also know that mental illness is difficult on everyone it touches.

I need to remember that my story intersects with other stories. It intersects with the story my parents could tell. It intersects with the story my siblings could tell. It intersects with the story my husband could tell.  Other people’s stories do the same – the parents of those adult children could write their story, and it would be very different than the one told by their adult child.

It is important for all of us tell our truth. I want the freedom to tell mine, and I need to accept that not everyone’s truth will fit neatly with mine.  I need to accept that the reality of schizophrenia lies in all of the stories from every perspective. Each of our stories is like a piece of a quilt that doesn’t make a bed cover until they are all sewn together.

Stories can be hard to hear, but continue to write them, and I will continue to read them, because your colorful square of fabric is as necessary as mine.