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| Dianne, Jimmy, my father, and Peggy, in our trailer home, 1972 |
I haven't written sooner because too much has been happening, and it is also for this reason that I haven't visited anyone's blog. Just know that I offer you my sincere thanks for your support, the moreso because I have become so nearly reclusive in the past decade or two that I know only person who lives nearby, and with whom I can share the full extent of my misery, and I haven't seen him for three years. It's not that I don't want friends; it's that I've become vaguely disappointed with what other people have to offer, and with how little other people seem to value what I have to offer. Now...
Peggy and I are on the verge of collapse. Some examples of what I mean... We are so consumed by fear that we can't think straight and we keep losing things. Our home phone went missing for three days. Books, shoes, wallets, stereo controls, car keys, shopping lists, and garage door openers, have all disappeared, some of them multiple times. Twice, I've taken a half dozen or so things from the big freezer in the garage in order to reach something in the back, and both times, I failed to put them back. For my entire adult life, my blood pressure was around 125/70. Today at the endodondist (I just had a five hour root canal over a period of two days) it was 195/128. As was getting out of the shower yesterday, I spent a long moment trying to remember how to turn the water off. I'm functioning so poorly that I'm terrified by the knowledge that Peggy's very existence could depend upon my ability to function well. Even so, our 54-years together have made us as one, and I am determined to be the lion at her gate, so I must be strong and vigilant no matter what, but it's so very hard. I'll use yesterday as an example of how both of us are doing.
It was a day on which we were dealing with one overworked druggist and three doctors, and because I'm legally authorized to speak for Peggy, I spent nearly as much time on the phone as she did, and that was a lot. Yet it was one of those days when it seemed like everything that could go wrong did go wrong. Peggy's pain was worse. Two packages were stolen off our porch. Doctor visits that we were trying to schedule ASAP were delayed because insurance hadn't approved them; or because one person had failed to call another person; or because a doctor hadn't filled out a particular form. We walked to the pharmacy to get our Covid boosters and to pick-up Peggy's Tylenol 3 and my Buprenorphine, only to learn that the pharmacy was out of vaccine; and that our regular doctor was out of the office, and his replacement had denied our refill requests (we finally got them approved). I now stop breathing twenty times an hour while sleeping, so each time, I partially awaken to gasp for air. I'm told that I need a new sleep study, but I don't want to take time away from Peggy to get it done. I could go on, but I will stop here because there's something else I want to share. I question the appropriateness of what I'm about to tell you, but I'm going to do it anyway. Because it's a story that could take pages, I must of necessity condense it somewhat.
After Peggy learned that she had pancreatic cancer, I pondered the fact that we have little support to help us survive the coming ordeal. I soon hit upon the idea of forming a sister-based support group that would primarily focus upon Peggy, but would also support me and everyone else, by which I mean Peggy's sisters Pam and Dianne, and Dianne's husband, Jimmy. I will now tell you about the result, but the story is so strange (in my view at least) that I will preface it as follows. While I have never argued with any of these people, I have also never felt close to any of these people, and I've only seen them twice during the 39-years since Peggy and I left Mississippi.
Even so, I was confident that everyone would embrace my idea. Jimmy said that he was interested; Pam said, "You need to get over yourself"(?); and Dianne didn't respond at all, although she later told Peggy that I was only wanting to form "a pity party"). I was so shocked by this hostility that I seriously wondered what I had done to make these women hate me. On the upside, they had told me where I stood, and knowing this would spare me disappointment later on.
Before I leave the subject, I'll share my final email exchange with Dianne, which occurred on Saturday. It's obviously a continuation of an earlier exchange, but you can still make sense of it. In the following, when I used the word yesterday, I was referring to a procedure that Peggy had a day earlier in which a endoscope was run into her stomach; a hole was cut through the stomach wall; and tissue was taken from her pancreas. It was the first of perhaps two biopsies, and it conclusively verified that she has pancreatic cancer:
ME: "I acknowledge that you too need support. I tried to give you support yesterday by texting frequent updates and by having Peggy say hello to you on my behalf. It is such gifts of affection as these that I want to give to you on a regular basis, but to do so, I need your affection in return."
Dianne: "No"
After sending this one word response, she texted Peggy as follows:
"I have blocked Lowell from my phone. I don’t ever want to hear from him again. He feeds on this kind of stuff and I refuse to take it anymore. I’m sorry you are hurting. I am too."
By "kind of stuff," I suppose she meant that my sharing of emotion is excessive, perhaps unmanly. As for blocking my calls, the number she blocked is the number of our landline from which Peggy often calls her, but I never do, In fact, I don't think I have ever called Dianne from any phone, but if I did, it was only to leave a message. Peggy is so hurt by her sisters' behavior that she has ended contact with Dianne, and has said that if one of them should propose a visit, she would say no. As for my reaction, I feel terrible that my attempt to form a supportive group led to a Titanic-size disaster. Peggy saw it coming (possibly from things her sisters had said about me) and even warned me that my attempts might lead to ruin, but I saw no reason for her concern, so I didn't listen.
Famlies are not really ever very supportive, at least in my experience, sounds like also in yours and Peggy's. So I guess I'm not surprised. I think you said once Peggy used to mountain climb with nurse friends? Are those mountain climbing friends still friends with her and other nurses she worked with? Maybe look there.
ReplyDelete"Families are not really ever very supportive, at least in my experience, sounds like also in yours and Peggy's."
DeleteIt was as if they waited until I was at my most vulnerable to deluge me with contempt that had surely been there all along without me recognizing it.
"I think you said once Peggy used to mountain climb with nurse friends? Are those mountain climbing friends still friends with her and other nurses she worked with?"
DeleteThe nurses are gone from her life, but Peggy just returned from a trip with three long-time friends to the Idaho State Clothing Button Convention. Only one of those friends knew of her cancer, and she and Peggy decided not to tell the others until the trip home. So it was that a scenic rest area was chosen. There were tears, and one woman vowed to be there for Peggy in any way necessary. Tom has repeatedly said the same to me, and I believe him.
Words fail me.
ReplyDeleteMy father and I were at war with each other when we found out he was dying. We put our hostilities on hold - though if he had miraculously recovered I suspect hostility would have returned.
I am so sorry that your attempts to reach out to Peggy's family failed.
And continue to wish you both well at this dreadful time.
"My father and I were at war with each other when we found out he was dying. We put our hostilities on hold..."
DeletePeggy and I were hardly "at war," yet we feel closer, and are getting along better, than we have in years.
"I am so sorry that your attempts to reach out to Peggy's family failed."
I have read our exchanges many times to determine if I bear partial responsibility for their behavior, but barring the things I apologized for, I don't see that I did. For one sister-in-law to have accused a man who just learned that his wife has pancreatic cancer of reveling in pity parties, and another to say that he needs to "get over himself," suggests calculated cruelty at a time when I was the least able to rise above it. When Peggy said that she won't allow her sisters to visit her, I was glad because I don't know how I would have coped with having them here.
You need help, and if there are appropriate services out there, take them on.
ReplyDeleteAre there any social services or community support groups for people who have cancer in your area? If so definitely access them, they'll expect you to be at the end of your tether and can be of great help. Psychologically this is enormous, it's major trauma; when I was going through a huge level of trauma diazepam helped me function, it helped me think, it took me from the place where losing things, and the rollercoaster you describe that I recognise well became a road again. A difficult road but one I could manage. I don't know if you can take that or anything like it, but some kind of anti anxiety meds at the moment would be helpful I think if possible. Ideally therapy too, but the support groups would supply an element of this if they exist. There are online groups set up for people going through what you both are as well, forums, I have turned to such forums for different reasons in my life and though I didn't tend to join in I found reading through how people would cope with the same nightmares very useful. People are crap, they do let us down, it's such a shame with the family what's happened. Some people just aren't comfortable with affection too, they can support as best they can but it tends to be practical for them I find. I hope Peggy doesn't burn any bridges with her siblings, and that in time, such that there is, things will be mended between you all. Much love Xxx
ReplyDelete"Are there any social services or community support groups for people who have cancer in your area?"
DeleteAfter writing this, you sent a list of such services, and we'll hang onto those links. Right now, we're running from appointment to appointment and procedure to procedure with hardly room to prepare meals.
It is obvious that Peggy needs support. People often forget the pain of someone so close to her also needs support. Have you checked into some sort of hospice care? My son said it was invaluable when his father was dying. They came to the house. Not only did they help with his physical needs they also tslked to him which gave him some companionship. When he died they helped my son deall with the death too. It's a shame Peggy doesn't have her family to show her love now when she needs it. Shane on trhem.
ReplyDelete"Have you checked into some sort of hospice care?" Hospice care means that the patient is receiving treatments for such symptoms as pain and nausea, but not not treatment for the disease itself. If and when Peggy is ready for that, it would be at home hospice care.
DeleteI am so sorry your dealing with all that by yourself.
ReplyDeleteOn top of all that. Trying to deal with a healthcare that really doesn’t.
It seems they’re only interested in money.
Compassion is lacking and makes a difficult situation even harder.
Don’t waste anymore time or effort on those that choose to not get involved
They will have to carry the burden of their actions for the rest of their lives.
"I am so sorry your dealing with all that by yourself.
DeleteOn top of all that. Trying to deal with a healthcare that really doesn’t.
It seems they’re only interested in money."
While it's true that modern medicine is big business, so far we've been treated very well by all but of one the many doctors she has seen and by all but one of the many other medical personnel.
Oh gosh, thats a painful thing to happen. What kind of people abandon their sister because her husband annoyed them?
ReplyDeleteI may be insensitive in saying this but over these last weeks with my dad dying I became so stressed I had reflux, a rash all over me, and I was clenching my jaw so hard i made my mouth bleed. I discovered that breathing exercises and chewing gum obnoxiously helped me to calm down.
I'd recommend and end of life doula, Peggy doesn't have to be at the end of life for you both to benefit from the support they offer
"What kind of people abandon their sister because her husband annoyed them?"
DeleteHer sisters want to support her, but they (especially the oldest one) insist upon doing so in a way that completely excludes any possibility of interacting with me. You might suppose that, for her to so hate me to impose such a burden upon her terminally ill sister, I MUST have done something horrible, whether to her or to someone she loves. I can but tell you that the only thing I did was to ask that Peggy's family band together with her and with me for the mutual support of everyone involved. I don't know what Peggy's sister read into this request (I can but point you to the quotations that I shared in this post), but that's where things stand, and all I can add to it is to speculate that Pam and Dianne interpreted my request as evidence of intolerable weakness on the part of a man who should be giving no thought to his own welfare and every thought to his wife's welfare. Her sisters' hatred puts Peggy in a no-win situation because were she to look for support from people who have openly heaped contempt upon me--and stood firm behind that contempt--I would feel betrayed. Throughout this ordeal, I have found it easy to think of the two of us as one, and I have no worry that pain, fear, grief, depression, bankruptcy, or the physical signs of disease, will ever threaten that oneness. However, if Peggy were to turn to her sisters for support, my belief in our oneness would be seriously challenged because it would be as though we were treading water beside a sinking ship and she said to me, "Our situation has become so dire that I am going to cling for support to that something that is too small for you, although it means leaving you to drown." That's what I would hear in her behavior, and a part of me feels that I should be okay with that. Yet I am not okay with it. My love for her can take me to many places, but it can't take me to that one.
So so sorry this happened. Lots of love to Peggy and you. I meditated on you folks. Sending healing your way. Please email me if you would like. i am at kijaana@gmail.com
ReplyDelete