Mr. and Mrs. J have been married for 57 years! She is so sweet and is always dressed nice. They have two children who live outside of the state. She fell a year ago after she got home from church. She broke her leg and had surgery. Nobody bothered to figure out that it was due to Pulmonary Fibrosis and she had had very low oxygen levels that contributed to the fall. She got diagnosed with it a few months late after she had been in and out of the hospital multiple times for respiratory problems. The senior’s pastor got a heads up while she was in the hospital for the third time and she met the husband and wife at the hospital two days before she was discharged. She engaged Mr. and Mrs. J in a deep conversation of how things were going, their concerns and what the church could do to help.  Communion was set up to be done at her home on a bi-monthly basis for which Mrs. J was very appreciative. 

A problem became apparent 60 days in. The diagnosis is terminal. The husband is stating that she is getting better and thinks that she will be off of the oxygen soon and things can get back to more how they were a year ago before she fell and broke her hip.  Mrs. J, is in complete agreement. No one has discussed the fact with Mrs. J or her husband that the diagnosis is terminal. Not her Primary Care doctor or her pulmonologist. For this particular diagnosis the 5 year prognosis for survival is POOR. The disease typically takes a persons life in the first 1-3 years. She is one and a half years into the diagnosis at a minimum and probably closer to two.  Mrs. J’s  physician’s, both primary and specialist, have neglected to have the conversation with their patient or her husband 4x during face to face appointments. They have not even recommended any reading materials. This despite multiple hospital admissions where oxygen levels were dangerously low and a serious bout of pneumonia that could have resulted in death. So the husband and wife have no idea, and are not planning to take advantage of their last 1-18 months together in a focused, purposeful way. 

Upon a visit by the senior’s minister, the wife said about attending church… “I am really waiting until my hair is doing better. It got so thin, I just can’t be seen like this.” The husband on the visit expressed no less than 6x that the burden of care was catching up to him. He has been caring for her now for a year by himself. She has periods where she requires some level of assistance for most tasks to needing only supervision. He had an amusing, but serious statement during the visit. She called to him “John” from the other room and he looked at the minister and said humorously, “I have got to change my name.” When asked on that visit about the things they have been doing the previous week, he responded they had only left the home for a hair appointment and had lunch on the way back. Asked about the previous month, the response was similar. This despite the fact that there were very few bouts of low oxygen saturations and Mrs. J was doing and feeling very well with getting around and participating with things.

This email came two weeks after that  visit:

From: CL <S@…org>
Date: Sept ——— at 5:14:59 PM CST
To: Sd …@…org>
Subject: FW: J
FYI.
On 11/15/18, 5:08 PM, “m-@aol.com> wrote:
Hi Lisa,
Sat with J and J at Methodist this afternoon. He is gathering family around tomorrow morning and they will be removing her from all life support.
J asked that I contact Pam and Doug, which I did. Pam will talk to John about what happens next.
J asked me who he would contact re service, reception, inurnment, etc.   Told him I would give you a heads up.  I guess LPam will start the process and then you will get involved??  
No idea about timing. In God’s hands.
Hard to watch. John is having a hard time.
Sent from my iPhone

A few things of note for consideration.

After the visit from the seniors minister the LEM (communion) team was asked how the J’s appeared to be doing. They reported enthusiastically that they were doing great. Completely unaware of the burden of care, quality of life, or terminal diagnosis. 

During their last 6 months together at home, the J’s had made no preparations on any level for her passing. Mr. J had not modified a single thing they did in the last 6 months of their life together that would indicate he was aware of the prognosis or the limited time he had left with his bride of 60 years. When asked about it by the minister who was very specific in her questioning of Mr. J’s and Mrs. J’s understanding two weeks before, she found nothing in their responses that indicated their understanding.  In fact, Mr. J’s response was that he was expecting her to get better and get off of the oxygen in the next few months.

For thought. The last year of their life together could have been dramatically different. Knowing you or your spouse is dying allows for a different mind set of understanding, motivations, and actions. Even laymen understand basic things that can happen if one knows their is a limited time like: 1) seeking guidance form healthcare professionals about end-of-life care so they do not feel overwhelmed in caring for your spouse and options and solutions, 2) being available to provide reassurance during the finals months or weeks. Allowing each other to make amends, to let them feel like it is “o.k. to go.” To provide a loving hand, soothing voice and give a sense of comfort, reading poems, book, spiritual passages, reviewing pictures and stories from their life together, prayer together, 3) find ways to say goodbye, including letting the children have an opportunity to be a part of this, 4) engage in family discussion about end of life wishes 5) discuss funeral preferences and ways to memorialize so that you can give a sense of peace and comfort to your loved one and honor their choices, 6) practical things like keeping and organizing your spouses personal contacts and financial information, 7) honoring you our spouses memory and legacy depending on what your spouse loved, things like planting a tree, dedicating something in your spouse’s name, giving or donating possessions or time to the community, creating a scrapbook of happy memories as examples, 8) reducing caregiver burnout! Like the typical overwhelming burnout Mr. J was feeling during the last year, and another he clearly didn’t have the opportunity to get which is 9) permission to feel his emotions. He gave no less than four references to feeling overwhelmed to the minister on their visit. All done in a humorous, “old school” man kind of way. He didn’t even know she was dying the whole last year. Can you imagine the ups and downs going into and out of the hospital? The anxiety? The fear? The hope? The sadness? The loneliness? This is one of the most difficult transitions you may ever experience and to do it not knowing you are going through it and without permission to go through it or have anyone to talk to? No chaplain or religious support system? To only have something “AFTER” it has happened?

These are just a FEW of the things they didn’t get to do the way they could have, to help make sure they had the best possible ending to their story together of 60 years. They never got that chance. Not at all!

The church offered grief counseling and support for making funeral arrangements quickly after her death.