My name is Maryann; my husband was Tom (died from a brain tumor that destroyed his frontal lobes and had started into his temporal lobes); his sister is Susan (suffered a massive, rare stroke about 6 years ago and is now trapped in a body that doesn’t work); her husband is Richard. Tom’s parents were Alfred and Julia; both died of natural causes. My father, Stephen, died of natural causes; my mother, Helen (96), is still living.
- I was very involved in Tom’s care (some hospital and facility staff may have thought I was too involved)
- I was not at all involved in Alfred’s or Stephen’s end-of-life care (lived too far away).
- I am not at all involved in Susan’s care (living in another state and my advice is not well-received by my brother-in-law, Richard). I’m just a sounding board and source of advice and experience for Amanda (Susan and Richard’s younger daughter).
- I share being very involved in Helen’s care with my brother and sister now that I live close by.
In about 1980, when signs of age and declining health caused them to face their mortality, both sets of our parents had living wills (now called advanced health care directives) and revocable trusts prepared. (Experience has proven revocable trusts to be absolutely no help in protecting assets from Medicaid and I think they’re pretty much a scam for attorneys to reap lots of $$ from us non-legal types, but I digress and that’s a whole other discussion topic….) At that time, Tom, I, Richard, and Susan thought about living wills and trusts but didn’t act on either. We joked with each other about when we got to “that point,” the other should take us out back and shoot us. (That’s not realistic.)
Alfred: In about 1992, Alfred had a heart attack and bad fall, then Parkinson’s and dementia set in. Even though he had a living will, because 911 was called, Alfred was revived and taken to the local hospital, where he had another heart attack and was revived again. His wife Julia was too upset and confused to argue with the staff; both Tom and Susan lived too far away to intervene. (Note: In last 10‑15 years of her life, Julia wasn’t able to reason or think clearly; I now wonder if she had the same type of brain tumor as Tom developed. I saw similar characteristics and thought processes in him, but will never know.)
Over the next couple of years, Alfred spent much time in hospitals, nursing homes, and a little at home. Julia wasn’t able to care for him properly (physical and mental decline of both of them), so he was moved to a nursing home. Alfred did NOT want to live like that, and continually pulled out the IVs; Julia had them re-inserted. When Tom and Susan finally were able to get there and intervene, they enforced the DNR order. Julia was unable to comprehend or accept Alfred was in the final phases of his life. Because Susan was there to enforce the DNR, Alfred passed peacefully in July 1994, at age 85.
Julia: Was able to remain in their home until 2000. She could not be left alone, and because she flatly refused to move, her children Tom and Susan went to her home, packed up her clothing and some belongings, and transported her to an assisted living facility (ALF) near us (Tom and Maryann). (A very unpleasant few days.) Julia continued to decline both physically and mentally, and in 2003, we moved her to a skilled nursing home (SNF). She continued to decline; the SNF honored her DNR, and she passed in 2004 at age 95.
Stephen: My father was also declining rapidly in 2004; in late November, he developed pneumonia and was hospitalized. Blood tests and scans revealed cancer that had metastasized throughout his body. His doctor had only been looking in his bladder (previously had bladder cancer), and wasn’t looking anywhere else. However, it wouldn’t have mattered, because Stephen at 89, couldn’t have endured any more surgeries, chemo, or radiation. He passed peacefully within about a week. The hospital and SNF honored his POA, living will, and DNR without argument, but my brother and sister were there to support my mother in this decision (not sure she could have done it alone). (The morning he was moved to the SNF for his final days, Stephen “checked himself out” before Helen and my brother could finalize the papers checking him in.)
Our POA, AHCD, and DNR: About 2002, Tom and I and Susan and Richard prepared revocable trusts (see cynical remark regarding those above), POAs, and AHCDs (no longer called living wills). We’ve since learned that even with living wills, advanced health care directives, and DNRs in place, medical people are obligated to revive a person no matter what—unless the authorized relative or friend enforces it by placing the DNR paperwork (or our bodies) in their face(s).
Tom: We had been living in New Mexico for 22 years when “my” Tom started disappearing in 2011, but it was attributed to “getting older” (he was then 72 and had finally retired from all commercial flying). In 2015, it became apparent to me something was very wrong with him, but because he remained pleasant and kind, doctors and friends didn’t believe me. In December 2015, doctors decided he was depressed; tried antidepressants, which only made him shake (like Parkinson’s); I stopped that. Next, they decided Tom had Alzheimer’s; Namenda gave him horrific diarrhea, so I stopped that too.
Many things had changed in both our families and names and authorities need to be updated in our legal documents. In early February, we updated our 2002 revocable trust, POAs, and AHCDs. Tom was (barely) still cognizant enough to understand what he was doing.
In late February 2016, when Tom suddenly lost continence of both urine and bowel and one leg was dragging, they finally believed me. In March 2016, an MRI revealed a humongous brain tumor (oligodendroglioma, grade 3) had destroyed Tom’s frontal lobes and was starting into the temporal lobes. Three weeks later (March 23), surgeons removed 85‑90% of the tumor; it had so many tentacles that they couldn’t get all of it. Tom spent 4 days in neuroscience ICU, then 3 weeks in the university hospital’s neurosciences wing. During this horrific time, he had strokes and all sorts of complications, but Tom was a strong person and still had the will to live (when he was awake), and I was (or friends were) there every day to watch over him. I had to give the hospital staff copies of his POA, AHCD, and the DNR paperwork three times. The radiation oncologist and chemotherapy oncologist visited him in the hospital; their prognoses varied.
Prior to surgery, the radiation oncologist said that:
- With treatment, the survival rate is 2-3 years; without treatment, survival rate is 1 year.
- However, a couple of weeks after surgery, he changed his prognosis and said with treatment, survival rate was 6 months to 1 year; without treatment, 2‑3 months.
- The side effects of radiation were predicted to be as bad or worse than what Tom experienced after the surgery.
Prior to surgery, the chemotherapy oncologist said that:
- No problem if patient was 40 years old and the tumor was smaller
- Tom’s situation was very unfavorable because of his age (77) and it’s a huge tumor
- Survival rate could be 10‑14 years with radiation and chemo
- However, a couple of weeks after surgery, he changed his prognosis and said there’s a 2‑year survival rate for this tumor
During Tom’s recovery in the hospital, I had two extremely strenuous arguments with the nurses, who wanted to intubate and insert a feeding tube. This was agonizing for me; I knew Tom didn’t want to be kept alive with machines, yet the nurses acted like I was killing him. They said they couldn’t treat Tom at all if I refused those extreme measures. I think a less determined person would have caved at this point; but, they didn’t know me….)
At the second argument, I was creating such a fuss the department head was called in to mediate. He agreed with my wishes regarding Tom’s AHCD and DNR. My family was in Idaho, but we had close friends and neighbors nearby. I called both family and friends in tears and near hysterics on those occasions. They all reassured me that I was following Tom’s wishes and to tell the nurses to stuff it.
After hospital discharge, Tom spent the usual 21 days of Medicare rehab in a SNF; that staff had no problems with the POA, AHCD, or DNR. Tom was to start oral chemotherapy and radiation treatments on May 12, 2016. The evening of May 11 (the night before his discharge from the SNF to home), I administered the first dose of anti-nausea medication, followed by his first dose of chemo. Six hours later, Tom was violently sick, aspirated vomit (which caused pneumonia) and he was taken to the ER, admitted to the hospital, where he spent a week recovering and contracted a staph infection. (Hospitals are full of germs, sick people, and all sorts of nastiness.)
Again, another agonizing decision for me. Tom and I discussed this, and he agreed he would prefer to take his chances on the tumor growing back, rather than be so sick all the time. I wanted Tom to recover as best he could and live the best life possible for the time he had left. I’m not sure just how much Tom understood about this situation, but he was cognizant enough to not want to be sick all the time! So, while sitting in the ER waiting for Tom to be admitted to the hospital, I called both the radiation and chemotherapy departments and cancelled all his radiation and chemotherapy. While they might have extended Tom’s life some, the side effects were NOT worth it.
After a week, Tom was discharged to home, where I cared for him (wheelchair-bound and with a catheter) with Medicare-provided home health care. Three weeks later, he had contracted a bladder infection and I was physically and emotionally exhausted to the point of being sick myself. Tom spent another week in the hospital. I had Tom discharged to an assisted living facility (ALF) with memory care. No problems with the POA, AHCD, or DNR.
Four months later, I was rested enough and caught up on paperwork and home duties and Tom had gained strength (could use a walker), catheter had been removed, and he had increased in cognizance. He received about three months of Medicare-provided home health care during this time also; the ALF was his home, so it was Medicare-approved. November 2, 2016, I brought Tom home with private pay caregivers 3 hours per day. In addition, our good friends and neighbors came to visit Tom and help me.
Knowing Tom would need lots of care for the remainder of his life, I decided it was time to return to my hometown in Idaho. I put our property up for sale, and seven weeks later, we were in Idaho. Accomplishing this was a miracle; only the Lord could have arranged that. We had a contract on our home in three days; friends helped us sell vehicles and equipment, and pack. December 14, 2016, we arrived in Idaho (during the worst blizzard in 35 years). Looking back, Tom’s mental and physical condition was at the “top” during November through February. We spent 4 1/2 weeks in a suite-type motel while our new house was finished. During that time, I had private pay caregivers three hours per day.
In mid-January 2017, Tom had a sudden, violent outburst (totally unlike him) and we took him to the ER. Blood tests were “normal” considering his condition, but the MRI revealed the tumor had re-grown and was larger than before the surgery in March 2016. We moved into our new home the next day. Long-term care was approved in February, and I had a total of 8 hours per day of paid care. Tom was referred to a family physician, who recommended Tom be placed in hospice immediately. He (physician) said Tom would qualify on the basis of the brain tumor alone.
The end of January 2017, Tom was admitted into a hospice program; they were wonderful. Another agonizing decision I’d been procrastinating on, as I thought “hospice” would indicate to Tom I’d given up on him. Thankfully, more knowledgeable and objective people convinced me otherwise; I needed to be realistic. I included Tom in all discussions, and to the best of his ability, he seemed to understand. Looking back, I’m not so sure. He read and re-read the hospice brochure and became quite confused and concerned about certain parts, but not the parts I expected him to be upset about…. Tom worried about who would pay for the hospice and what about the bereavement counseling for me? I called the hospice chaplain to talk to him, but it didn’t help; Tom’s brain just couldn’t understand it. After about two weeks, I explained to Tom we would file that brochure away and “refer to it later” (one of his favorite phrases). He was OK with that and promptly forgot about it and “hospice.” He thought the people who came to help him were just friends and visitors…there were many friends and family who came, also.
I’m not sure this was right, but I did not discuss Tom’s impending death with him. I was afraid with his limited mental state and no ability to reason, he would obsess about this or totally misunderstand. Everyone and I used phrases such as “when you get your strength back.”
In late February, Tom was noticeably declining. In Mid-March, Tom declined more, both mentally and physically. Hospice recommended we stop all medications except those for pain and agitation. Another agonizing decision for me, but the reality was Tom could no longer chew properly even soft foods, use utensils easily, swallow pills or crushed-up ones in applesauce or pudding. And he wasn’t going to get better….
Although the last couple of weeks, Tom said he didn’t have pain, I think he did; his brain just wasn’t able to recognize it. Tom would rub his forehead (where the tumor was inside) and become agitated in addition to the usual sundowning of dementia patients. Hospice recommended I start administering the low dose of liquid morphine, so I did. The last week of Tom’s life, his appetite had diminished, and he became lethargic and unresponsive, and he was rubbing his forehead more. His brain was no longer communicating with his body parts; he could barely walk, hold a spoon or cup, forgot how to pushout a bowel movement, etc.
Six days before Tom passed, he lost all ability to support himself sitting or “help” us stand him up to move/swivel from bed to wheelchair. It was difficult for me and the caregiver to move him around; impossible for me alone. The hospital bed was too narrow for me alone to roll him over to clean him properly. After many tears (not where Tom could see), I admitted defeat and realized I’d have to place him in a LTC facility.
Hospice arranged for my 5‑day respite to start on March 29. By then, Tom wasn’t even interested in sucking on the sponge-on-a-stick for moisture. Per hospice, I was giving him small doses of morphine throughout the day and night for pain and agitation. March 28, I was praying that Tom would pass here at home so I wouldn’t have to put him into a LTC facility. Although that prayer went unanswered, by now Tom was pretty much sleeping all the time and was (I hope) unaware of what I was about to do. During this time, he would respond to me and our relatives, but without opening his eyes.
On March 29, Tom (sleeping the whole time) was transported to the facility; we checked him in at 10:45am; I stayed until 1:15pm, when my brother, my son, and the facility staff insisted I go home and start my respite. I held his face in my hands, kissed his lips, told him to rest, I’d be back in the morning, and that I loved him; he kissed me back and mumbled something that sounded like, “I love you.” Then I left, in tears and close to a nervous breakdown.
I paid a caregiver to be with Tom several hours that evening, but he remained unresponsive. At 2:50am the next morning (March 30), the hospice RN called me to say Tom had quietly passed (age 78). He was only in the facility for about 14 hours.
I now know what “wracked with grief and sorrow” means. The guilt and sorrow were unbearable for about a month, but now I only have it sometimes. Should I have put Tom through the surgery and rehab? Should I have just put him on hospice and just let the da#n tumor go its course? Probably not; at least I know we did everything we could to save him. To see such an intelligent, caring, kind person decline into such nothingness is unspeakably horrible, but no worse than watching someone decline with Alzheimer’s. When I think about my husband’s ordeal, my emotions are still strong. There was the uncertainty of what to do, feeling very angry with God for allowing this to happen to such a good and kind man; very angry with the nursing staff who wouldn’t listen to me regarding his DNR, and gut-wrenching grief at having to make life-and-death decisions for someone else. However I felt extreme thankfulness for the support of our many friends and family members through this ordeal.
Susan: In 2010, Susan had a severe, rare stroke in her doctor’s office. Disregarding Susan’s DNR, the doctor’s staff revived her. She went through many lengthy attempts at rehab, but none worked; during lucid moments and while still able to speak, Susan expressed her unhappiness and frustration for them reviving her. (The doctors told her family that had the stroke happened at home, she would have been dead by the time the emergency responders arrived.)
Susan has been totally bedridden for about three years; her mind trapped in an almost nonfunctioning body. Richard (her husband) is unable to release her; even now, he still believes that with physical and occupational therapy, Susan will recover. About two years ago, also contrary to Susan’s original wishes and her AHCD, Richard had a feeding tube installed. Susan is now unable to speak, except for very weak, strained mumblings; I believe the feeding tube has lessened even more her ability to speak.
To Richard, “hospice” is a 4‑letter word, indicating that all hope is gone and the patient will be tortured and killed. No amount of counseling or reading of hospice material has changed his mind. Richard’s opinion is that everyone on hospice, including Tom, declines and dies because hospice does nothing to help the patient. Thankfully, they both have LTC insurance policies, so at least for now, Richard can afford Susan’s 24/7 home care.
Susan’s daughters are unable to change Richard’s mind. They help with their mother on weekends (they both work full-time), but tell me that Richard becomes quite uneasy and agitated when they want to get more involved. At the end of one visit, Amanda hugged and kissed her mother, told her she loved her, and asked if there was anything else she could do. Susan whispered, “Yes, but he won’t let you.”
I’ve tried talking to Richard about hospice and letting Susan go, but he insists their situation is different than mine and Tom’s and that I just don’t understand. I think because it’s so difficult for Susan to communicate, it’s very easy for Richard not to (not want to) hear Susan’s wishes. And, at this point, I’m sure Susan is very frightened, as Richard has allowed no hospice- or counseling-type person to talk to her. Their daughters and I can only stand by and watch this heartbreaking situation. I’m very angry with the doctor’s staff who didn’t follow her DNR and revived her initially; and extreme frustration with but feeling sorry for Richard. I will always wonder if living closer to Susan and Richard would have enabled me to change his mind? Probably not.
Overall, my experiences have taught me one thing for sure: Urge all adults, especially if they have children, to prepare POAs, AHCDs, and a will or a non-revocable trust as soon as possible. And then, to honor/respect their loved one’s wishes written in those documents.