Grief and Resilience Live Together
I am posting this today because I need some support. I am an emotional wreck for the first time in decades, and while I am usually very good at figuring everything out, I realize that sometimes I do have to allow myself to be vulnerable and reach out to people who might have a similar situation and be able to offer me some guidance. I really do have too much humility, and see that it is my pride about living gracefully with a chronic, incurable illness that has caused me to reach the point where I am beginning to question my own existence and future. No, I am not going to do anything stupid, I just need some support.
I don't know if it is the tapering off of the Effexor or the other things going on in my present situation that have caused me to have crying jags nearly everyday this week.
I thought that giving up my caregiver role would help me to focus on my own health, which it has. It was only until I stepped back, that I realized that providing help to anyone was just another way to avoid my fear about my own health situation, and as a result I am frightened beyond belief. My denial system has been so strong, that once I stopped focusing on the needs of others, I began noticing how awful I felt both physically and emotionally. Yes, I have a positive outlook, or as positive as one could be in my situation, which has been described previously. However, this pain I feel now almost feels visceral. My brother in law, age 73 and who has always been a "rock" has dementia and while my sister has kept saying she would place him in a facility, she has not been able to make this very difficult and personal choice. She learned on Monday that her husband will soon need a wheelchair, a result of a back injury of which could be corrected surgically, but cannot because of the dementia. He would be unable to participate in his recovery. In the meantime, my sister, the only one of two who speaks to me, is suffering from her own health issues, which she has put aside because of her husband's condition. I have tried every way to support her, suggesting modalities to treat her neuropathy, a result of chemo drugs when she had breast cancer years ago, yoga to help her with her stress etc. I have encouraged her to "get some help" which goes against the "family code" of not "telling" and which I no longer abide by, obviously.
Certainly I have it pretty good, friends, a "good" support system, but recently have found that those I have known a lifetime do not want to hear me discuss anything with respect to my condition(s). Yes, they provide me with great support when they want to, give me some financial help when they want to, but what I really need is a true friend who will be my "witness" for lack of a better word. I just texted a friend and asked if he had time for a 15 minute conversation and instead of responding he sent me a video of the beach he took this morning. You can imagine what I wanted to fire back, but did not.
Being chronically ill and living alone is a constant struggle, and I do the best I can to NOT ask for help in any situation. However, I see now that perhaps it is okay to reach out and ask for someone, anyone, to tell me that I am doing a good job, and while my future is grim, I can still live as healthy and productive life as possible.
I am facing so many difficult decisions, alone. Everything is building up and I don't know how to separate all of these conflicting feelings. I still see my friend Carolyn nearly everyday, somehow thinking that she could provide me with the guidance I need and which she used to give to me predementia. What was I thinking!?
I have tried in vain to avoid posting anything as personal as this, but I am confident that someone will read this post and hopefully respond in some fashion that will allow me to continue to stay focused, positive and not do something stupid.
Thank you
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Dear Frances, Many of us have found ourselves overwhelmed at times by health issues and issues in our lives. I know that you are a very private person, but it doesn't sound like you have found anyone in your personal circle to share your feelings.
Perhaps now is the time to find a support group here on Connect where people will understand your particular health issues, and can share your journey? It helped me tremendously with my journey through Bronchiectasis and serious lung infections, and again when I was dealing with chronic pain and needed to find my way to help.
Would you consider that option?
I really wish to see your suffering diminish so you can enjoy life a bit.
Sue
I’m sorry to read about your situation. We all need a soft place to fall so to speak. Unfortunately, those around us my not have the skills or ability to provide that kind of care or supportive embrace. Caretaker fatigue is real. It affects you in ways you can’t even imagine. I found out the hard way. Trying to hang in there to help others can take a toll big time.
I found that focusing on my own health, wellness and nutrition was vital. And, a professional therapist to talk to was a top priority. My therapist listens to me, provides me support and helps me figure out what I’m feeling and how I can better meet my goals. I can’t say enough good things about it. Plus, it’s confidential.
Support groups are great too. This site is especially kind and supportive. You can get support and give support. It feels good to help someone feel a little better. We never know what another person is going through. I have a dear friend who recently discovered their spouse has a very serious illness. I hope she will let me support and help, but it’s difficult to know how.
I hope you find lots of responses and resources. Sending positive vibes and warm wishes your way!
Thank you. For what it is worth, the psychologist I was working with for months went AWOL just before Christmas, and it was not until I contacted her office that I was paired with a new one after the first of the year. Sadly, she had more problems than her patients, and I assumed the role of therapist to her. I was so astonished when she "left" because I had made it so clear that I had been "abandoned" in the past and did not want to experience this again.
This is the third time this has happened to me, which has caused me to lose faith in the "system." As you know, I have a lot of humility, and many tell me I am handling things with dignity and grace, but after stepping away from most of my "distractions" I realized that those "distractions" were a defense mechanism which allowed me to avoid how "I really felt inside." I thought I had evolved from those "family rules" reinforced over and over again. "Don't you ever tell anyone what goes on inside this house or this family." However, I did tell, and I am still admonished by my sister for doing so. "You have spent thousands of dollars to get your head straight, yet look at all the mistakes you have made in your life!" I know I have evolved, but giving up all of my distractions has caused me to take a much closer look at where I am in terms of my medical issues, and while my doctors keep telling me I have a great attitude and to remain positive, there are times more recently when I feel a profound sense of loss of myself, my abilities to do things I once loved doing, and how I feel physically. I actually called my friend Carolyn last night and said, "You know, if I committed suicide, no one would know for days because no one has a key to my apartment, and no one checks on me or visits anymore." It was just a thought, a warning if you will, that I need to "reframe" my thinking, which I am doing presently. Painting a huge mural on my living room wall. Breakin clay pots outside because I am so angry at the world, at my sister for not even considering doing something for herself as opposed to lamenting about her husband, who will more than likely outlive her at this point.
Thank you for your kindness. Perhaps I am also upset because 3/2 marked the second year of my dog's death and I wrote another article on Medium about her and my experience of losing her. I will post it, if you are interested.
https://medium.com/@frncsshelley/dogs-best-friend-5a277bb47bcc
Thank you. You know, I used to live with a psychotherapist who often told me, "we are all just a speck." This is how I feel today. Just a dot in this huge world full of millions of people. I think it is some kind of Jungian thing or Nietzsche, but it sure rings true sometimes.
@frances007 - Oh!!! Oh!!! Oh!!!
I am sorry to hear of this downturn for you, as you describe it, an accumulation of things that are overwhelming, even if only one of them occurred.
I may have missed earlier posts where you describe how you decided to cut back on your caregiver role/s (and/or outside activities?), but when I first began reading your posts and challenges (with a crazy neighbor of all things?!, etc), all of which you handled with grace, wit, more patience than I could muster under those circumstances, and more inspiration to create than I have been able to muster 'lo these many, many years' - I have been fond of your approach to it all, and truly inspired by your grit (not to put too lofty a spin on it at all), but truly.
I don't know if it helps to ask what made you decide to not pursue these (outside?) activities, nor am I suggesting it was a bad idea - not at all! - but I am asking because I want you to be well, to know that you do have it in you to persist and endure and then thrive eventually through all of this.
How can I convey a warm hug, especially as you mention the 2-year mark of the loss of your dog, ... is it a consideration to love another animal you deserve the companionship of? Sort of as you described it, but knowingly, I just comforted my therapist who I could tell at the beginning of our meeting just a few hours ago was not up to par - she just had to put her dog of 14 years to rest, and hasn't slept for the last 4 nights because of it.
I've had to do that too, to 2 of my dogs - in the distant past - but the pain, while it may be dulled, if revisited is no less heartwrenching. But the unconditional love, the companionship, the nurturing they provide so readily, and their innocent loving ways are so cherished that it may be worth (re-)consideration? I don't know. I have 2 cats now, and while I had & grew up with dogs, I'm realistic enough - at least at this time, and with where I live - to know I wouldn't be good with the regular walks they require - though "lord knows" I need the exercise!
So, I sure hope you find something in my words here that may ring true for you, and continue to let me/us know what may be your next heartwarming step for you, OK?
Hugs,
Brandy
Oh dear!! I'm so sorry to hear that you are having such a rough time of it. I know life transitions can really be challenging, especially with health conditions, and it sounds like you're in the middle of a major one. I want you to know that you are NOT just a speck and God loves you! Maybe there are art classes in the area where you could explore new mediums, make new friends and hang out with people? I've heard that Hobby Lobby might offer stuff like that. I think it's so cool that you have a gift for art! I've tried painting before and I find it really challenging.
Hello Frances,
Your post is very relatable and experiences seem close and familiar to me. We are on similar paths.
I have chronic pain and illnesses that have been disabling, a hardship. In so many ways it is a challenge to chronicle.
Pulling back from caregiver roll or from the ‘helper’ roll in general, from a person that does not like to ask for help or to ‘burden’ - it is a challenge to change to accept - my role is evolving.
The roles have changed (reversed). I mentally tried to stay in a familiar roll but had to bend to disabilities that have been winning over, to; ask for help and not find it in the people I have given the most too hurts deeply. Now I have reluctantly moved to a revised role and accepted my limitations (I am a work in progress, it is taking time to get there).
It is disheartening, but I have come to the conclusion that when people are accustomed to someone having the answers, or offer an empathetic ear or help - they are not used to reciprocating. Not used to having the roles change or reverse. So they do not give (time) what I, with hopeful anticipation, would not receive.
Perhaps their particular vantage point does not permit appropriate reply or to be there for me. I can only hope a person has the ability, desire...But when it hits close to home, and someone doesn’t, they are the very people closest…it is jarring, surprising and a shock to the system.
It has forced me to talk about ‘fluff’ while in a painful-flair and hard diagnosis(s) to have to accept basically alone (I have to live in this body). Lacking the emotional aptitude to give back. I have to accept it. Also, to give in a bit. To not stay focused, feel hurt or rejected but work on redirecting my energy so I don’t become angry. For me, anger turned inward causes depression, it ends up an unrecognized repressed, corrosive thought. So, I fight it.
You have your mind. That is key. You have and will continue to make the right decisions. You have to up to this point.
When I was depressed, I did more sleeping than functioning - maladaptive. It was bad at one time before I received appropriate ‘help’. It took a team to get well and time, trying to find the medication that would work and then it took time to be on the medication to see if it would alleviate symptoms.
It can and will get better for you. You are reaching out. Keep reaching…
Titration off of the medication could be causing a relapse. Consult the prescriber and relay symptoms. Symptoms could be a combination of suffering you are experiencing and withdrawal. I’m no doctor but have experienced extreme sadness.
Keep pushing forward and bounce things off people who share and care.
Acceptance. It is not easy. Change. Hard to do. All, possible.
Not speaking out had been corrosive to the soul. When I shared, I began to heal.
When things, issues become or are overwhelming, if I write about it, I have better clarity. I am doing that for current medical situation. It puts clarity where there were clouds. Such as writing out medical goal, symptoms, diagnosis, remedies…so I am able to learn to ask the doctor for help.
I hope something in this helps you if even a tiny bit Frances.
If ‘a’ condition - is that is very hard near impossible for me to deal with - how can I expect or hope that they can be there for me and deal with it? It would be hard for anyone. Outreach here is the first step, difficult and necessary.
I am fortunate and do talk to someone. My therapist is my ‘sound’ sounding board and the person I know who will make sure I am thinking about things in a healthy way and help me mentally and emotionally. I know she works with me. Thank God I have her. She helps me keep things in perspective. It is easy to sink into a hole and not want to come out.
I have pulled back. One thing I am trying to do for my well being is take one day, one moment at a time. It has become my mantra. I’m not saying this as a dismissal to dealing with what ails, it is more a way of handling todays challenges. As they come. Plan what I must then return to taking life moment by moment.
I told her just today that I have finally (as a caregiver) ‘accepted my limitations’. Thereby curtailing my overall involvement in that caregiving.
I never thought I’d arrive here, but the disability and/of pain has me almost at a standstill. Still, it hurts and the short-sidedness is off-putting and frustrating to accept. I can’t hold it against them. It had been self-defeating.
I have come to the realization that I never really will know another’s struggles unless they discuss them and I walk in their shoes. They perhaps can’t see my pain. They cannot see or feel what I feel or struggle with.
Everyone has a cross to bear. So, I see it that way rather than be disappointed or saddened about it or so I try. So, when someone isn’t there for me, I try to see it this way. It is compassionate to give them this understanding - one way. This makes me feel more connected.
I don’t want to shut out anyone, but know my mental health would suffer if I did. Suffering in silence.
Wishing you well. Feel better soon ❤️
It took a long time to recover from losing my beloved pet. They are pure unconditional love. Their licks are the best medicine.
💛
@nemo1 - So well put, so well expressed.
My only hope is that it can resonate for Frances, you, and those others of us in similar straits.
I am not in a disabling condition right now, but have been dealing with pain from a necessary outpatient procedure / surgery for a month now. What I have helping me is the idea that it will get better. No one exactly has told me this, but I will be asking for more specifics at my next doctor exam this coming Monday. The oncologist and her team have been compassionate, reachable, and helpful in their suggestions, though for whatever reason nothing has resolved the pain - let alone removed it - but the application of Vaseline at the time of the pain, just to keep it brief.
I am concerned, and wanting to know how I can better share Frances' pain - I'm hoping that, much as you wrote, to speak it is somehow to reduce its impact. Here we are 'speaking' it through writing, and the Mayo Clinic Compassionate forum has been so very very helpful.
I hope it helps enough here Frances, and for others (myself included) as we endure through our various struggles, to be able to communicate them in this empathetic forum and with the benefit of others who can share their pain and struggle and efforts to combat, lessen and even remove it, if only enough to reset and remain consoled in who we are and our own essential worth.