Help for Healing

Bitter & Sweet, living daily with grief


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When end-of-life care magnifies the pain

I’m cheating this week. I am going to post an article in the Buffalo News that I wrote and was published yesterday. I love the title the paper came up with. Care is supposed to diminish the pain, such irony. The response to the article has been amazing. I have gotten emails from people telling their own stories, asking for assistance in guiding their journeys with their loved ones. I am especially excited about one from a geriatric doctor who I will be meeting with to discuss how to attempt to make positive changes in the system. I think it’s worth posting it here for those who aren’t local or don’t read the paper. Please feel free to share your own stories and experiences!

“After losing Mom and my husband, writing books about it, and becoming credentialed as an Aging Life Care Manager, I assumed approaching Dad’s death was going to be the best death I had the privilege to be part of. I know that sounds strange, but I had become educated and knew when Dad switched to palliative care, when his time came, he would not suffer. I promised him that.

I had absolutely no idea what I was talking about.

Over the last decade, I became increasingly involved in his care. He had Parkinson’s and we began the journey of educating ourselves the hard way. After treating swallowing issues and bladder disorders for years, we were finally informed they were symptoms of Parkinson’s. Itchy skin. Blood pressure. Is there anything this thing doesn’t touch? It’s a slow progressing disease that makes life miserable but doesn’t have the courtesy of actually killing you. At least not for years and years.

My family and I helped him “get his affairs in order” over time. He slowly made changes financially and legally to put him in a good position. He sold his house and eventually landed in Assisted Living, just down the street. While it seemed crazy expensive, finding out about a VA benefit made it almost affordable. He would have three meals a day, have his apartment cleaned, and his laundry washed.

We made sure his medical papers were ready. We had lots of discussions about his wishes so I could be a good Health Care Proxy if need be. By the time he turned 85, he had lived a good life and was ready for the next and a reunion with his wife.

In July, Dad starting experiencing pain. Spoiler alert: Two of the last three weeks of his life he lived with increasing pain. I knew our medical system was broken, I just didn’t realize how badly. Medicine has become a for-profit business, which usually means money is more important than patient care. No matter how much I advocated, I couldn’t beat the facility or the medical persons they contracted with. It became crystal clear they didn’t understand palliative care or that palliative and hospice were no longer interchangeable. More importantly, they didn’t want to. Professionals should inform patients of treatment options and expected outcomes. The decision to treat (or not) should be the patient’s, not the doctor’s.

I could not get the administrators to see what was happening. The staff would often shudder at what they witnessed but were powerless. His primary would not prescribe enough pain medication and refused to order a catheter in spite of his fall risks. There was blatant refusal to accept his MOLST (Medical Orders for Life Sustaining Treatment). It finally culminated in them blocking Hospice from treating him. Yes, you read that right. Eventually they were cited by the Department of Health for failure to comply or I can’t imagine how bad Dad’s suffering would have gotten.

I later discovered that about four years ago, regulations were drastically changed. Dying is not enough to gain Hospice care. You have to have a terminal illness to qualify. How do I keep heralding the advantages of palliative care if there is no one to help folks when they get to that point? Hospice can’t be happy about this either.

I will never, ever forget the look in Dad’s eyes when he was hurting and I could do nothing for him. The several individuals who refused to do proper research and care for him appropriately should not be practicing. You only get to die once. Why should a decorated Korean War veteran, after working his entire life in an American factory, and was a volunteer firefighter for 60 years, have to suffer at the end of his life? If you can answer that, please tell me. I would do anything to make sense of it.”


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Janet

My sister Janet is eight years older than me. I have some memories of her as a kid, but mostly there was a big enough age difference that we didn’t steal each other’s clothes or boyfriends so there wasn’t a lot of conflict.

She is the middle child, but for years we also called her the Perfect Child. As adults, I found out that she always hated that so I stopped saying it. I also call her Dad’s favorite daughter and I haven’t stopped saying that. I joke around about it, but it doesn’t seriously bother me because she is truly one of the kindest women I’ve ever known in my life.

I was just talking with a client yesterday who has a family member with cancer news. I remembered when we starting testing Tim and suspected it might be cancer. Janet lived near Rochester so she was an hour-and-twenty-minute drive away. I was on the phone with her when she said, “No matter what happens Darcy, you won’t be alone. We will be there every step of the way.” And she was.

Twice during Tim’s five months of illness, she took an unpaid leave of absence to come and help. I never forgot that because there were other relatives/friends that lived closer and were more close to Tim than she was, but she was the one that didn’t bat an eye. She just took the financial hit and came.

One memory that particularly stands out was when the decision was made for Tim to go to Hospice to try to get his sleep regulated. I called her to tell her and she made all that distance and got here before the transport car came. She and I took Tim around the property in a wheelchair to give him a chance to look at everything, reminisce, and ultimately say goodbye.

She has been here again, this time for Dad. She arrived the day before New Year’s Eve from Tennessee. And she is still here. She leaves Saturday which means she was here a full three weeks. Dad required 24 hour supervision until this week so she literally spent the whole time with him in his assisted living apartment.  I can’t even begin to express what a massive relief that was to me.  I know Dad is going to miss her terribly, as will I.

I enjoy her company immensely, but I was in a catch-22. She was here to take care of Dad, which was my chance to get a break. I wanted to visit with her, but I needed some distance from the situation at the same time. Thank goodness she completely understood that.

Even though she lives in Tennessee now, she still had a job where she had to take an unpaid leave of absence to be here. To take a three-week cut in pay when you live paycheck to paycheck is an incredible sacrifice. She makes it without blinking an eye, without a question. If I asked her to stay even longer she would.

Her husband supports her being here, even though I’m sure he misses her. Her daughter supports her being here, even though Janet misses her little grandson so much I’m sure her heart aches. So thank you to all of her family who let us borrow her capable hands and her ever-giving heart.

And how do I thank Janet? I couldn’t possibly. But deep down, I know she knows. She loves me too, and came to support to me. Mostly though, she did it for the deep love she has for our dad. He’s not an expressive man, but I know he appreciates her as much as I do.

IMG_20180109_101722452_HDRThank you dear Janet. You truly are perfect!


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There’s No Place Like Home

After what seemed like forever, Dad returned to his apartment last Saturday. Of course all the preparation was for naught because the promises made to me on Friday were only empty words. When I arrived to get him, the staff had no idea he was being discharged and the paperwork wasn’t even printed out. After several hiccups, he was finally in his own apartment.

It’s been a bit of a roller coaster since then. Three hours after going home, I came back to visit him and he was shaking like a leaf with a fever. After consulting with a nurse, he took some Tylenol and seemed back to himself. The next day, the visiting nurse came to see him. His blood pressure dropped from 120 down to 80 (top number) when he went from sitting to standing. I almost had a heart attack myself when she said she had called in to see if he should be sent to the hospital. Thank God the answer was no. We both would have freaked out.

The next morning we were able to meet his new doctor. I asked if we should increase his low blood pressure med. She suggested we keep an eye on it this week before adjusting anything. Later that day my boyfriend and I were going to walk the dog when I got a call from Dad. He wasn’t feeling good. We went right over and he said he was feeling dizzy. He tried to get up from his chair and almost fell. Thank goodness I caught him.  I had my boys come over right away to stay with him while I worked. Then we went back later. He was already sleeping by 8 pm but he seemed stable.

Tuesday came and the visiting nurse called and said his BP was low. She said she would let me know how it was on Thursday. That brings me to today. I went to see Dad in the morning and his PT person happened to come at the same time. I told him it was good timing because Dad was struggling to stand up from the chair. The visiting nurse and her assistant showed up too. This time Dad’s BP was 80. When he stood up, it dropped to 60/40.  Seven different medical people later managed to convince Dad to go to the emergency room. He did not want to go and I didn’t blame him. We both had a good cry. They suspect he is dehydrated.

As I write, I am in the emergency room with him. His blood pressure is up to 119 with no intervention, not even fluids. There has been no doctor to see him yet so I have no idea what is happening. The best case would be some IV fluids and back to his apartment.  My heart breaks for him. He’s a good man who has lived a good life. He has been ready for what is next for well over a year. Instead, this is his sixth hospital visit in the last 14 months.

The folks where he lives have been great. It is obvious that in the short time Dad has lived there, he has made an impression. He is so well liked and everyone is so concerned for him. They are responsive. I told them all that there is nothing to increase your appreciation more than to be forced to be somewhere else for a while. Here, people do their jobs well and still have common sense and compassion.

Say your prayers for us. Exhausted doesn’t cover it. And whatever I feel, I am quite sure Dad’s suffering is much worse. It’s physical, but it is also just so very emotional.