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I'm upset all the time....


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My heart goes out to everyone here.

My 80-yr old father is having lots of health problems and now things seem to be getting worse. He was diagnosed with lung cancer a little over 2 years ago. He had surgery to remove a lobe of his lung, and radiation. They didn't really stage it at the time, but after treatment it seemed things were going well. But 5 years before he was diagnosed with Chronic Lymphocytic Leukemia (CLL) and COPD. He was also taking blood thinners for Afib. In the past year he has developed problems with not having enough platelets. They treated that with infusions and took away his blood thinner. About 6 months ago he started having pain in his lower back and leg, constantly. So couple of months ago we found out that the cancer has spread to the spine. Now they are saying he has stage IV cancer. He had radiation for the spine which ended about 3 weeks ago, but he has still been in a lot of pain. He has become very week. He started using a cane a few months ago to now a walker. He has fallen a few times too Mom had to call someone to help get him up. About a month ago he had fluid on his lungs that had to be removed. 6 months ago he could walk and do things himself. Now he's on the walker and has developed worsening incontinence. He doesn't want to eat, but he's doing better with that now. He’s a little confused too, which scares me. He is now is the hospital with pneumonia after my mother called an ambulance because he was so weak and couldn’t breath or walk. They also found a fractured vertebrae, from the cancer, which they said they won't do anything about because they are afraid of bleeding. The same goes for the little bit of fluid on his lungs. He was just transferred to rehab. The pneumonia is getting better, but always something happens. He's been doing physical therapy for the past few days. 

I am so scared. It seems all I do is cry, even as I write this. I not sure how to do this. I feel like I'm losing my dad, little by little and something could happen at any time. I live about 1000 miles away from everyone, which makes it harder. I rely on my mother to give me daily updates. My husband says to stay positive, but I'm trying, not very well. My mother is there all the time with him and she has her own issues. She needs a hip replacement and is in constant pain, which she can't do anything about right now until my dad is stable. She’s doing the best she can. 

Plus my sister is battling breast cancer. She will be undergoing a mastectomy in 2 weeks. I'm worried about her too. She had a kidney transplant as a teenager so there are other health issues to take into account. The doctor said her prognosis is good, with a very low chance (<1%) that it could come back or move.

Last week I happened to have an appointment with my family doctor, one day after my dad went to the hospital. I was very upset and thought I could talk to him a little about how upset I am and having trouble dealing. So I was crying when he came into the room. I told him what was wrong. He listened for a couple of minutes and then said "Well, we can't talk about this anymore. I only have about 10 minutes so we need to talk about you (overall health, medication, etc). And nobody lives forever. Just pray." That just upset me even more. I went through the exam. Now I feel like he just dismissed me. Was I wrong? Should I not have brought it up? The family doctor does not help you with those kind of issues? I know that he's not a psychologist. I just thought I should tell him and how its affecting me?f

Sorry if this is rambling. I just wanted to get it all out....thanks.

 

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I am sorry you are going through so much and also that your doctor was so dismissive.  I had a doctor set a timer when she entered the room and when I told her about a torn tendon in one ankle and a pulled one in the other, she said "the ins. won't cover that.  You'll live or you won't!"  Apparently times have changed and doctors with it.  My doctor I had for 33 years would take the time to listen.  When my husband passed away, he called to check on me.  When I went in to see him, he shut the door, sat down, and spent about 1/2 hour listening and talking with me.  He told me to call him at home any time day or night and extracted a promise I wouldn't do anything rash.  (He knew what my husband meant to me).  The doctor I currently have will also take the time to listen.  I would look for another doctor and when you send for your records, enclose a note saying why,.  Start polling your friends and family for referrals of good doctors.  You can also call your health network and talk to them about it, they may have some suggestions as well.

A good doctor will consider what you are going through as part of your overall health because it's all related.

I lost my mom 1 1/2 years ago, and my dad 34 years ago, and know anticipatory loss very well, it's very hard to lose them bit by bit and feel the loss ahead of time.

This is a good place to voice yourself and know you will be heard by others that understand. My best to you in this journey.

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Theresa, my dear, I am so sorry to learn of all the serious and frightening health issues going on with your family members, and your description of the visit with your own doctor is heartbreaking. Unfortunately it is a description I am hearing more and more these days. Just yesterday I read an article by a physician describing what it's like from a good doctor's point of view (A Physician's Open Letter to Medicare Patients). So much of a doctor's practice and how s/he gets reimbursed for care provided is regulated by government nowadays ~ it's a wonder that there are any good ones still willing to stay around. One nurse friend of mine wrote that "It is happening and patient care will suffer as the system continues to be micromanaged by our government. An example of more to come---my husband and I do not have a primary care physician (we have a nurse practitioner) because in our area we could not find a physician that would take a new medicare patient and I called every office in the area." You may not be on Medicare yet, but it's a good example of what can and probably will happen to all of us now, with the Affordable Care Act in place. I share this just to illustrate that it's not always the doctor's fault that he or she has only 10 minutes to spend with a patient. I hate it just as much as you do, and I know that lots of doctors hate it, too.

What I would suggest, Theresa, is that you contact your local hospice to ask for a referral to a good grief counselor ~ someone who understands anticipatory grief and can help support you through whatever lies ahead. You need and deserve someone with whom you can share your concerns and who can give you more than ten minutes at a time to do it.

In the meantime, know that you are most welcome here, and we will listen with open arms and caring hearts to whatever you have to say.

I also invite you to read these articles, to help you understand and cope with what you may be feeling:

Anticipatory Grief and Mourning

Anticipatory Grief and Mourning: Suggested Resources

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Thank you both for your replies. I really appreciate it. Your words are greatly appreciated.

KayC, It sounds like the dr you had for 33 years was very caring and supportive. I'm glad you had him. I have thought of looking for a new doctor after that happened. But we may be moving in about 6 months, so then I have to (I think that's a good thing.) Plus the move will mean we will be closer to my family, which I really want. Hopefully it will go through.

MaryT, Thank you so much for your suggestion about a where to find a grief counselor and the links. I will read them.

Again, thanks for your kind replies and your warm welcomes. Peace to you both.

 

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