Things I think about when I miss my parents...

I turn 50 this week.  That's really hard to believe. Even at this age, I am still affected by the problems that would haunt this woman and her little girl...

Yesterday morning I had a dream - without providing all the details, the gist of the dream was that I was being emotionally abused and my parents were not doing anything to help me; in fact, they were complicit with the emotional abuse.  They must have been about the age I am now, and I was college-aged - so our ages were all out of sync with reality. But the feelings were very reminiscent of so many times during my childhood, adolescence, young adulthood.  Frustration, betrayal, disappointment...

Ultimately, I was forced to leave home and trying to find some safe place to live, but could not figure out how to do that. Then I woke up. I was so upset. The dream brought up my old, recurring feelings about how my parents failed me - how they failed to teach me that I was a lovable person, how they failed to protect me, how they failed to prepare me for adulthood, how they failed to be the kind of parents that you would be able to disclose painful experiences to. 

When I visited their grave yesterday to bring them some flowers, I told them that I no longer struggle with any doubts about whether or not I ever failed them; I know I didn't fail them. But I do still struggle with my feelings over they ways that they failed me.
 
I wish I could have talked to them about this when they were alive...

Relationship History and Caregiving

Looking for a senior residential community for a loved one?

I recently heard about a web service, called A Place For Mom, that claims to help families locate senior care communities for loved ones with Alzheimer's or other types of dementia. I logged on and asked for a list of facilities near my zip code, and they provided the names of most of the private-pay, independent living facilities, assisted living facilities (ALFs), and memory care facilities in my area.

I would say one drawback is that I had to give them my email address AND a phone number to get the list.  So when they call me tomorrow, I will have to explain that I don't need any further assistance.  But, if I was seriously looking or a place for one or both of my parents, I would certainly want them to call me and talk to me about it.

Depending on state regulations, if your loved one is on Medicaid and qualifies for supplemental security income (SSI), they may qualify for placement in a licensed Assisted Living Program (ALP). Generally, only officially licensed ALPs or combined ALF/ALP facilities accept payment via a combination of Medicaid and SSI. This may differ by state; for example, it is true in New York State.

This web service provides license numbers for the assisted living communities in the list, but does not mention payment options or if the license is an ALF or an ALP. The web service is funded by the "participating communities" which means they are only recommending participating communities.  I would caution against making placement decisions based only on the information from this site.  However, if you are not familiar with the facilities in the area, this may be a good place to start.

You should be able to search for the license number on the state department of health website, which can tell you if there are any ALP beds in the facility of interest.

Caregiver Matters

Hello, I am Dr. Maria T. Brown, a trained geriatric social worker and a
researcher in the field of aging.

Normally, I use this blog to express my opinions about things going on in the world.  Today, however, I want to tell you about the new YouTube channel I am launching, called Caregiver Matters.  All too often, families find themselves in the position of providing care to older members of their family, who may or may not want their assistance even if they need it. And many families end up figuring their situation out as they go along, without assistance, because they are unaware of the resources available or the situations they will encounter.

I have personal experience caring for my aging parents, have worked with family caregivers in a dementia clinic, and have facilitated caregiver support groups. In fact, it was my experiences as caregiver to my parents that pushed me into getting my social work degree and my desire to understand the elder care system, and perhaps influence change in that system, that pushed me to get my PhD.

Even as I pursue my academic work on aging, I know that many of us who are caring for older adults really need simple, practical information on how to provide care, how to manage the responsibilities of care, and where to turn for help in providing that care. So I am launching this new YouTube channel, Caregiver Matters, to provide information and encouragement for people who are caring for the older adults in their lives. I hope that if you have need for this kind of information, you will visit my channel and let me know what issues or challenges you are facing as a caregiver.

Wishing you the best of luck in your caregiving journey!

Social Support and Sexual Minority Women with Breast Cancer

I am conducting a research study on social support and sexual minority women (lesbian, bisexual, queer, women who have sex with women, trans men and women, etc.) who have had breast cancer. A full description of the study is available below.

If this survey applies to you, I hope you will consider participating. 

As this is a very small population and difficult to find, I am also hoping you can help me reach other women by sharing this link with your networks or with any individuals you know for whom this survey would be appropriate, or who may know someone themselves who might be appropriate. Your experiences are important to me, and your help would be greatly appreciated. 

Please let me know (mbrown08@syr.edu) if you have any questions, and thank you for your help! 

Maria T. Brown, LMSW, PhD
Syracuse University 

STUDY DESCRIPTION:
My name is Maria Brown, and I am a professor at Syracuse University. I am inviting you to participate in a research study. Involvement in the study is voluntary, so you may choose to participate or not, and you may change your mind and leave the study at any time. This page will explain the study to you and please feel free to contact me by email (mbrown08@syr.edu) with questions about the research. I am happy to explain anything in detail if you wish.

I am interested in learning more about the sources of stress and social support affecting sexual minority women (lesbians, bisexual women, women who have sex with women, transgender women) who have had breast cancer. I am asking adult women of all ages and from all walks of life, who identify as a member of a sexual minority (lesbian, bisexual, transgender, queer, or women who have sex with women) to share their breast cancer experiences, and how their life has been affected by having breast cancer. You are being asked to participate in a survey. This will take approximately 30-45 minutes of your time. Once you begin the survey, you can take a break at any time, and you will be able to return in the next 6 days to complete the survey. All responses entered in an incomplete survey will be saved for six (6) days. All information will be kept confidential. This means that your name will not appear anywhere and your specific answers will not be linked to your name in any way.

If you decide to take part in the survey, and at least partially complete the survey, you will be given the choice of entering in a raffle for a $10 Amazon e-gift card. The odds of winning the gift card will be 1 in 20. You do not have to answer any questions you are not comfortable answering. Entering the raffle will require you to share your email address at the end of the survey. This email address will not be used to link your survey responses to your email address, and we will make every effort to protect your confidentiality. Your survey responses and your email address will be stored in separate electronic files on my password-protected computer, and your email address will never again be connected to the survey data.

Whenever one works with email or the internet, there is always the risk of compromising privacy, confidentiality, and/or anonymity. Your confidentiality will be maintained to the degree permitted by the technology being used. It is important for you to understand that no guarantees can be made regarding the interception of data sent via the internet by third parties.

The benefit of this research is that you will be helping us to better understand the sources of stress and social support of sexual minority women with breast cancer, and identify ways in which sexual orientation or gender identity are relevant to breast cancer treatment and life as a breast cancer survivor. This information should help us to better understand what sexual minority women go through in these situations, in order to develop programs that better serve this population. In addition, I will be publishing the results of this survey, to serve as a resource for other sexual minority women facing breast cancer. There are no personal benefits to you from taking part in this study.

The risk to you of participating in this study is that it may be upsetting to think about things you went through during your breast cancer experience or as a result of having breast cancer. If participating in this project brings up difficult feelings about your breast cancer experience, or if you would like the support of other sexual minority women who have been through cancer, you can join the Facebook group for Lesbian Cancer Survivors and Caregivers (https://www.facebook.com/groups/LesCanSurvive/). This is a members-only group of lesbians who have had cancer, or who have cared for someone with cancer – they come from all over the world, have different types of cancer, and are at different stages of diagnosis, treatment, recovery, survivorship, or bereavement. You can also find additional information for LGBT people with cancer at The National LGBT Cancer Network (http://www.cancer-network.org/).

If you do not want to take part in this survey, you have the right to refuse to take part, without penalty. If you decide to take part and later no longer wish to continue, you have the right to withdraw from the study at any time, without penalty.

To protect your privacy, information about your participation in this study will not be shared with anyone else, including any acquaintances, agency staff members, or service providers who may have forwarded you the email invitation to participate in the survey.

Contact Information:
If you have any questions, concerns, complaints about the research, please contact the researcher Maria T. Brown at 315-443-4685. If you have any questions about your rights as a research participant, you have questions, concerns, or complaints that you wish to address to someone other than the investigator, or if you cannot reach the investigators, contact the Syracuse University Institutional Review Board at 315-443-3013.

314 Lyman Hall, Syracuse, NY 13244   (315) 443 3685
mbrown08@syr.edu
asi.syr.edu

https://syracuseuniversity.qualtrics.com/SE/?SID=SV_0rlucU4S6ThIejz

How often do you feel your own heart beating?

I would guess, not very often.

As long as things are working like they're supposed to, most of us can't even feel our heartbeat - unless we are intentionally taking our pulse or something. But most of us won't even do that unless we are monitoring our heart rate during cardiovascular exercise.

I think it's true for most people, and it is definitely true for me, that we become much more aware of our heartbeat when it starts going awry.  Heart palpitations is probably the most common way people become aware of this. Palpitations are common enough.  They can happen as the result of too many stimulants - caffeine, nicotine, speed or cocaine, etc. - or as the result of stress.  So most of us will experience then at one time or another during our adult lives.  Perhaps you have had them already.

I started having palpitations in my 30s - stress and caffeine.  Which is why I have been drinking mostly decaf coffee only for the last 15 years. And also one of the reasons I gave up Pepsi, which I used to drink once or twice a day.  God, I can't even imagine feeling that hyped up on caffeine now. One regular coffee or can of caffeinated soda, and I'm jittery all over for an hour. 

A few years ago, my palpitations were back, but even more alarming to me was that I was unable to do more than 20 minutes of intense cardio exercise in a class setting before I started feeling dizzy or coughing or being completely out of breath.  After a full work-up from my cardiologist, it was determined that there was nothing wrong with my heart.  No damage from chemo in 2008 or radiation in 2002 - and yes, damage from radiation therapy for breast cancer can show up decades later, so that really was something the cardiologist looked for.  Basically, then, there was no identifiable reason why my heart couldn't tolerate an elevated heart rate for more than 20 minutes; it just couldn't.  So... I either had to figure out how to take cardio classes and allow myself to let my heart rate drop more often during class, or I could just manage my cardio - and my heart rate - by exercising as an individual. 

Being an inherently lazy person, I chose the latter.  Which worked fine.  On my own, I never achieve the elevated heart rate that I can hit in an exercise class like kick boxing or Zumba, or even Group Power.  God, Zumba was a killer for me.  I could still do classes like spinning or group power, because it's so much easier to moderate my heart rate in those classes - you can choose your own level of exertion, set your own pace, nobody needs you to keep up with them, and noone is distracted by you if you slow down or hit pause.

So, all of that was manageable.  Did I still have the occasional episode of palpitations? Sure, but who cares. I already knew my heart was fine.

Why am I blogging about this, then?  I'll tell you why. A few months ago, I started noticing a change in the pattern of these palpitation episodes, and that pattern has only become more consistent and persistent. So this Wednesday I am heading back to the cardiologist for a stress echo evaluation.

The pattern goes something like this - first of all, you should know I have an average resting heart rate, somewhere around 72-75 beats per minute. Really, I just checked sitting here at my desk, but it's also all over my medical records. Anyway, here's the pattern: if my heart rate becomes elevated, say, over 88 beats per minute (which is the low end of the target zone for cardio fitness for a woman my age, by the way), it feels like it's racing, and then I start to have palpitations.  These palpitations will persist as long as my heart rate stays up, and then for several minutes afterward, until it settles back down to a resting rate.

The palpitations feel constant, but there is actually a pattern to them.  I had several episodes like this on Saturday, so I took out this stethoscope we have at the house, and I listened in on one of these episodes. I had just been down in the basement dealing with the laundry, and walked upstairs, when I felt the first palpitations. My heart rate was about 85 beats per minute - ba dum ba dum, ba dum ba dum, ba dum ba dum - after about 30 seconds, I had 3 irregular heartbeats - ba dum ba skip, ba dum ba skip, ba dum ba skip. The beat after each skip felt like my heart was flipping over or getting squeezed or something. Then my heart rate slowed down a little to around 80 - another 30 seconds, another 3 irregular heartbeats. Then my heart rate slowed to around 75 - another 30 seconds, another 3 irregular heartbeats. By then, I was back to my resting rate, and I had a full minute without any palpitations.  Then I put the stethoscope away, because noone wants me to obsess about this; that's just too much like my Dad.

So, which kinds of activities bring on these palpitations? Let's see - I walk about 1/2 mile from my car to my office, and then back again, every day; that brings them on.  When I walk up the 3 flights of stairs in my building at work, that brings them on. Or when I walk up a hill. Saturday, when I was rearranging the sunroom to put up the Christmas tree, that brought them on.  Vacuuming, that does it.  It's starting to feel like almost any activity does it. Many of these activities are also starting to cause some shortness of breath. Thus the doctor's appointment.

Turns out there IS hope for the bereaved...

I'm watching a film, where the lead character's father has died. The film follows Oliver after his father's death. During the early months, Oliver has all of these moments in his interactions with other people, with the world, that remind him of his father's last few years, their times together. His memories dominate his waking life, his working life, his emotional life. He lives in this half-here/half-there, half-now/half-then state. I remember this state. Such a lonely place, and you wonder if you will EVER get to the other side of it. Or if there even IS another side of it. Or what you and the world are supposed to look like now. 

The important part of this rumination, my friends, is that I REMEMBER that period of my grief after losing my father (9/14/2010), and then my mother (9/14/2012).  That particular phase of my grief for them is finally in the past.  And I don't think it will ever feel quite like that again. That phase of grief reminds me of the emergency phase of post traumatic stress disorder - when the trauma dominates the survivor's consciousness, when they unwillingly have flashbacks to what has traumatized them, when they feel like it will never end.

And then, gradually, almost so slowly that you miss it, things start to change. Those moments become further and further apart. The waves of grief that smash into you, taking you completely be surprise, only come up to your neck instead of covering your face, then they only come up to your shoulders, and then your chest, and then your waist. And one day you realized that you are wading where you once feared you would drown.

Not that I don't still sometimes feel very keenly how much I miss my parents but, especially in the last few weeks, something has shifted. Those parts of my brain and my heart that used to hurt because of how they treated me, and then because they were suffering, and then because I regretted how I felt I failed them, and then because I lost them, and then because I miss them... those parts of me feel strangely vacant, waiting for me to figure out what I am going to do with them.

Last weekend we were in the Adirondacks sitting on a pier, watching twilight deepen over Fourth Lake, waiting for the starts to brighten so we could practice some astrophotography. 

In the stillness and the silence, which we rarely have in our lives, I realized that I was not sad. I didn't know what I was, but the sadness that I was so used to feeling, that sadness that had become my "go-to" emotional state, just wasn't where I had left it. There was space instead. And I remembered that before the first breast cancer (August-November 2002), and losing Cookie (5/25/2005), and the second breast cancer (November 2007-May 2008), and losing Dad, and losing Mom, I used to enjoy that space, and it gave me room to do things like needlework, beading, crochet, reading, other hobbies and activities, time with friends, or (gasp) fun. Since Dad died, and then Mom, that space was just hurting all the time, and I have gotten in the habit of covering that hurt with mind-numbing things, emotion-numbing things, Bejeweled Blitz, solitaire, Facebook...

But in that stillness on the lake, I felt content, peaceful, relaxed, and happy. And I thought that maybe, if I'm done suffering from the grief, if I can feel this okay on a weekend away from home, maybe I can feel this okay in the living room, or at work, or on a walk in a park, or at the grocery store. Maybe my status quo can be "okay" or "content" or even, God forbid, "happy" instead of "bereaved" or "orphaned" or "stuck" or "cancer survivor."  Maybe I can start to feel like myself again.

Last month, a few days before the anniversary of my parents' deaths, I attended my first session of the Hope for Bereaved support group. The group is free and meets once a month. I hated most of it, cried for at least half of it, was exhausted when it was finally over. And doubted that I would ever return. Within a week, I knew that attending that group is what made it possible to get through the anniversary feeling as sane as I did, so I would have to go back. 

It is coincidental, or ironic, or inevitable, that I am finally feeling hope after starting to attend the Hope for Bereaved support group?