The two weeks leading up to his death were the most difficult weeks in my life. Not only was he dying, but my Mom was having significant health issues with mobility (unable to stand, falling repeatedly, extraordinarily high blood sugar levels, and being hospitalized from December 29th-January1st).
However, for this post, I'm going to focus only on my Dad because that was even more difficult to deal with than the issues concurrently happening with my Mom.
So, I re-read the CaringBridge website that I kept to let people know about my Dad's health and journey with Alzheimer's Disease. Since I was writing to let others know about him, I used the first names of my parents (Don and Dorothy) rather than how I normally call them (Dad and Mom).
Dad and Mom.
(Taken on April 24, 2010.)
Below are some of the things I wrote on the CaringBridge site at that time:
Monday, December 26
This was the quietest day of the week, with no crisis to attend to for either Dorothy or Don. Angie, Don’s primary nurse, wrote in his notebook that is in his room, “Don was very compliant with cares today. Not too hungry today. Smiled when he laid down for a nap and winked at me.”
Tuesday, December 27
Angie, Don’s nurse, wrote that it was “not too good of a day for Don. He was very pleasant but not connecting with eating or what to do. Very quiet today. He wanted to hold my hand during lunch, so there we sat holding hands. Only had a few bites for breakfast/lunch. Maybe tomorrow will be a better day.”
Wednesday, December 28
Tom H. took Dorothy to see Don. She was so grateful that Tom was able to take her, and give her that opportunity to spend time with Don. She said that Don was not having a good day, and was not very responsive. Dorothy sounded pretty discouraged and sad.
Dad with Tom before one of the walks
that they use to take.
(Tom, a Stephen Minister, started visiting my Dad
while he was still living at home.)
Angie wrote in Don’s notebook, “Don is having a tough day so far. Seems like he is in pain. When asked, he denies any. Bites at breakfast with eyes closed. Wide awake at lunch. Ate fair. Thanked me for my help. Laid down after lunch for a nap.”
Carol, a volunteer from the North Memorial Hospice wrote, “Thank you Angie and others for communicating so well! It’s so helpful! Don was sleeping during my visit. I just sat with him and held his hand. Sometimes that’s all we can do – let someone know that they’re not alone.”
Dad's hand in mine.
Later in the afternoon, Ann called North Memorial Hospice to discuss Don’s eyes being closed. She talked with Kathy, the hospice nurse who is responsible for Don. “It’s not his eyes being closed that concerns me,” she said. She went on to say that she has seen people who have had their eyes closed for months before dying.
Kathy said, “What concerns me is the significant weight loss that your father has had in the past month, particularly the last couple of weeks.” She said that the nurses have noticed a dramatic difference in this health – not only his weight – but that he essentially has stopped eating. “He’s still eating a bit, but not a lot. When he stops eating, generally it’s about three weeks. A human body can survive without food for three weeks. But, your dad doesn’t have much extra weight on him at this point, so it may not even be that long.”
Ann updated both Mary and Jim about Don’s condition and what Kathy shared with her. We did not tell Dorothy because she does not want to hear anything about the future and what will happen.
Later, Ann began finalizing the wake/vigil and funeral plans. She reviewed the information that Bonnie from St. Joseph the Worker sent her about the proper order and components of a Catholic vigil and funeral. Although Ann had already done quite a bit of work with the plans, there are still some modifications that need to be made in terms of order and elements that Ann had not included.
Thursday, December 29
In the late evening, Ann called David D. in Arizona to let him know about Don’s condition. David always calls on Christmas Eve and this year was unable to talk with Don. Dorothy didn’t know the phone number to St. Therese or how David could reach him.
So, Ann wanted to let David know that he could call the nurse’s station and they could put the phone to Don’s ear and David could talk to him. Although Don wouldn’t probably respond, he would certainly know David’s voice. (They have known each other since 1958 when David was 11 years old.)
David (on the left) with my Dad (on the right).
David shared some wonderful stories about camping trips that he and Don went on. He did remember going up the Gunflint Trail, Gunflint Lodge, and then canoeing and fishing on Lake Saganaga. David and Don also took many trips to the BWCA in upper-central Minnesota.
Friday, December 30
While Dorothy was being treated at North Memorial, Don also was having an equally difficult day. In the early morning, Ann first received a call from David who said he tried to get ahold of Don, but that the nurses said he was resting and had a fever. They said that he should try to call again around noon.
As David and Ann were talking, Ann received a call from St. Therese saying that they needed to update her because Don had a fever (99.8). At this point, they weren’t sure if it was because of a bug that was going around the nursing home or if it was indicative of the terminal process. They said they would keep Ann informed.
While Ann was talking with Lana (the nurse), she told her that David D. tried to get ahold of Don. She was the one who had talked with him and encouraged him to call back. Ann explained who David was and the significance of the call. Lana said she would make a point of answering the phone at the nurses’ station and letting the other nurses there know that David would be trying to call Don.
Later that afternoon, David was able to reach Don and talk with him. David said, “Don’s still around! He recognized my voice right away. When I said, ‘Goodbye,’ Don said, ‘Thanks for calling.’ So…he’s there!” Despite being upbeat, it was clear that the phone call was a very difficult one for David to make. That being said, being able to connect with Don – even through the phone – clearly made a difference to both David and Don.
Lana and Ann talked later when Lana gave Ann an update about Don. She said that she was so happy to be able to be there for the call. She said that the minute Don heard David’s voice, he began mumbling and trying to talk with David. She said it was an emotional call, and that she got goosebumps just being able to be a part of that call by holding the phone to Don’s ear.
When David said “Goodbye” she said, “Your dad clearly said, ‘Thank you for calling.’” So, that phone call and hearing from David was very important to Don…and Don wanted David to know that. Lana said that she was so moved by the legacy that Don is leaving, and is honored to be a part of caring for him.
Ann sent copies of Don’s wake/vigil and funeral plans to Gearty-Delmore Funeral Chapels (which Don requested be used), St. Joseph the Worker Catholic Church, the Archdiocese of St. Paul and Minneapolis, and Wayne (the social worker) at North Memorial Hospice.
Saturday, December 31
After visiting Dorothy in the hospital, Ann went to Don and Dorothy’s home; and did things in preparation for Don’s funeral. Simple things that can be done now, but will be mentally overwhelming later, were done (e.g., putting Dorothy’s dresses together in one side of the closet for her, putting together an outfit for Don).
After looking in every single closet in the house, she finally found Don’s albs and stoles that he wore when he was a Deacon. In another closet, she found Don’s Boy Scout shirts that he wore as a Scoutmaster; and the vests he wore when he and Mary and Ann participated in the YMCA’s Indian Princesses program (it was an excellent program that was designed to build stronger relationships between fathers and daughters).
Dad with Jim (on the right) and
David (a neighbor and one of Jim's friends).
Both boys became Eagle Scouts
under Dad's leadership as a Scoutmaster.
Ann also went through each room of the home and found photographs, slides, and negatives that she will scan and convert to jpeg images. Ann found a scrapbook that was given to Don on his 65th birthday that included 65 memories from family members. It was nice to be able to read and remember some of these happy times.
She also found some wonderful pictures of Don being ordained as a Deacon; of he and Dorothy on trips they took together; of his work with the senior group at church (the Gadabouts) and the trips and activities they did together; and even pictures of him playing Santa for family and friends.
Dad playing Santa, and
Sophia not sure what to make of the situation.
(Taken in December 2001 when
Sophia was almost 1 year old.)
Don was sitting at the table with two other gentlemen and a woman. “Hi, Dad, it’s Ann.” There was no response. Ann got a chair and sat down next to him. His face seemed flushed and there were tiny beads of sweat on his nose. He breathing was labored. He looked like he was struggling and uncomfortable.
Ann bent down and looked at his face since his head was down a bit. His left eye was open a bit. “Oh, Dad! Your eye is open! It’s me…Ann! I’m here to have dinner with you tonight.” She took his hand and he grasped it and didn’t let it go.
Knowing he hasn’t been eating much lately and Kathy (the hospice nurse) had told her that food can be uncomfortable for someone who hasn’t been eating, Ann didn’t want to try to get him to eat anything that might be difficult.
Being that it was New Year’s Eve, St. Therese tried to make Don’s meal a bit more festive. They gave Don shrimp cocktail, barbecued meatballs, corn, champagne cake, a glass of milk, and a glass of water.
“Would you like some water?”
“Yes,” he said. She placed the cup to his lips and he drank a couple of sips. She watched him, and it seemed like he was holding it in his mouth and not swallowing the water.
His face looked like it was in pain and he still wasn’t swallowing the water, so Ann told Don that she was going to get his nurse. The nurse who was there said she would get Lana who was feeding someone else in the other section.
While we waited, the nurse (not Lana) came over and gave Don some milk by holding back his forehead gently. Although he did drink a couple sips, he held it in his mouth. The nurse walked away and Ann sat watching Don to see what he was going to do.
Eventually, he ended up spitting it out, so Ann cleaned him up. He was quietly moaning and his face seemed constricted. His hands and shoulders would jerk or spasm periodically (Lana later explained that it can be due to the electrolytes being off because she’s not really eating or drinking much). It was incredibly difficult (and sad) to watch. In observing Don, Ann felt like he was in pain.
So, at that point, since Lana had not finished feeding the other resident, she asked the nurse if Don could go back to his room and lay down. “We’re not done with meal time, but we can adjust his chair so he can lay down.”
Almost immediately, Don’s face color changed to a more normal color and he didn’t wasn’t perspiring any more on his face. He looked so much more comfortable laying down in his Broda chair.
We sat there a few minutes, but we were sitting under a light (which felt like we were spotlighted) and everything seemed so loud – the people talking, the music – it was just too much.
“Dad, I’m going to take you back to your room so we sit where it’s a more quiet,” Ann said.
She brought him to his room, and sat down next to him. The t.v. was already on and turned to St. Therese’s in-house station where there was relaxing music playing. She turned the volume down just a bit, and then re-adjusted Don’s blanket.
Throughout this time, Don’s hand was on the beads on a cat toy that one of the nurses had given him. As he was fingering each of the beads he was mumbling. It was almost as if he was praying the rosary.
The cat toy with beads on it.
Ann pointed to Don’s hands which were still moving the beads and his mouth that was moving. “It looks like’s he’s praying the rosary,” she said.
“We were noticing that earlier too, and that’s what we thought as well,” Lana said.
Lana started to say that Don’s health would not be improving. At that point, Ann put her fingers to her lips to indicate to not discuss Don’s health in front of him, and then motioned to the door. “I’ll be right back, Dad,” Ann said.
Outside Don’s room, Lana said that she felt that even though Don’s fever went down because of the Tylenol to 99.1 late last night, it had now increased to 100.8. Combined with the labored breathing, sweating, and other signs they felt that this is indicative of the terminal process and not sickness.
She recommended that each time, from this point forward, that when any of us visits that we leave feeling like we’re okay – like we’ve said everything that we wanted to and needed to, and that we won’t regret don’t saying what we wanted to say.
Lana also asked about Dorothy, so Ann updated her. We talked about how both Don and Dorothy wanted to stay in their homes and not be in a nursing home or assisted living. “When they are in Heaven and their bodies are once again healed, they will understand and know you did what was best for them.” Lana said she believed that once whole and healed again, each of them will understand the choices that had to be made for them and that they were made with love and concern for them.
At 9:38 p.m., Lana called Ann at home and said that the narcotic pain reliever had arrived (Ann’s not sure what its name is…only that it is very strong medicine that will relieve Don of any pain he is in) and she already gave it to him. She wanted to call to let Ann know that it is prescribed for three times a day (8 a.m., 1 p.m., and 8 p.m.) and hourly as needed.
She said that Don looked very comfortable and that Ann should go to bed now and rest…knowing that he isn’t in any pain and is being well cared for by the nurses there.
And that was New Year’s Eve 2011.
Sunday, January 1, 2012
Ann just received a call from Lana at St. Therese. As they were moving Don today, he was experiencing apnea. The longest time period was 45 seconds between breaths. She recommended heading over, if possible.
We had anticipated that Don’s health was nearing the end, so we didn't bring much in terms of staying overnight for an extended period of time.
The nurses put Don on morphine at 8:00 a.m., 1:00 p.m., and 8:00 p.m., and then as Ann requested it on behalf of him.
Michelle (the nurse) from North Memorial Hospice came and helped get things established and settled for the first day/night. Sr. Ruth Ann from St. Therese came by and read some verses from the Bible and sang a pretty song.
Fr. Mike came and performed Last Rites on Don, and said nice blessings. Fr. Mike and Ann privately discussed the wake/vigil and funeral mass.
Both Dorothy and Ann stayed overnight in Don’s room. The staff brought in a fold-out bed so that Dorothy could rest comfortable next to Don. Ann slept in the chair next to Don’s bed.
Throughout the night Ann would remind the night nurse to give Don his medicine every hour. That seemed to help relax him and reduce the troubled breathing.
Monday, January 2, 2012
Don’s apnea remained about the same. However, the level of congestion in his lungs and throat sounded worse today, and what is known as the “death rattle” began. It’s a very disturbing sound to listen to. However, we were told by the nurses that Don is unaware of the sound and that it doesn't bother him. That’s comforting to know.
Several people from North Hospice came during the day: Wayne (social worker), Kathy (nurse), Suzanne (music therapist who played the dulcimer harp and “On Eagle’s Wings” on her guitar).
The nurses were very attentive to Don with adjusting him in bed so he was more comfortable, and giving him medicine when he needed.
Don had many visitors today who provided encouragement and wonderful stories that are helping to sustain us through this difficult time.
Sr. Ruth Ann came in to visit Don and Dorothy, but didn’t want to wake them. Don was resting in his bed, and Dorothy was sleeping on the pull-out couch next to him. They were holding hands as they slept. Sr. Ruth Ann had tears in her eyes and said it was the right and appropriate thing to have Dorothy leave the hospital early. This is where she need to be…with Don.
Mom and Dad's hands.
Jim stayed until midnight with Don and Dorothy. This gave Ann a chance to sleep for four hours in the family lounge, and then come back to the room to be with Don and Dorothy and attend to any needs they had during the night.
Tuesday, January 3, 2012
Don made it through the night, and is experiencing the same apnea as he was the day before. The congestion and rattling noise has subsided slightly. He seems more at peace and restful today.
[There were 12 visitors throughout the day. One was a long-time family friend, Maureen.]
This was taken in the early 1980s.
It's of Maureen and Larry with their 4 children; and
Mom and Dad with us 3 kids.
Maureen is in the back row on the far left.
My Dad is second to right in the back row.
Maureen helped facilitate conversations between Olivia and Papa, and Sophia and Papa. They did this over the phone. Each of the girls spent a good amount of time sharing memories and talking with Papa, even though he didn't respond to them.
Sophia and Olivia with Papa
on Olivia's 5 1/2 year old birthday.
(This was taken in July 2008.)
It was a valuable and meaningful way to have closure on the relationship. Ann is deeply indebted to Maureen for encouraging her to do this, and giving the girls an opportunity to say “goodbye” to their Papa.
Teresa is Don’s primary nurse today, and Angie (who was Don’s aide) is back today. We are so happy that Angie had another opportunity to see Don after coming back from a break.
Angie checking on Dad while Mom rested by his side.
Although Don has been being shifted throughout the day, the last one that Angie and Teresa did was a bit more high risk. Potentially, a move like that could facilitate the dying process along a bit. Ann can’t remember why (she’s tired at this point and can’t remember the name of what could happen to Don). So, from this point on, moving him will not be done quite as often.
Ann noticed a butterfly that was placed outside of Don’s door. Ann asked Angie what the butterfly meant. “It means that someone is in the process of dying.” When the person dies, a little white dove is placed by the door.
Wednesday, January 4, 2012
Around 5 a.m., we had a scare. One of the nurses who came in to give Don morphine also brought a few teaspoons of water. Her intention was very good – she wanted to relieve the dryness in Don’s mouth. However, he had not swallowed liquids well (or at all) since New Year’s Eve when Ann joined him for dinner.
Within a minute after the nurse left, Don began choking on the water. Ann ran out of the room and called for the nurse who returned and repositioned Don. She also took a swab and cleaned out his mouth.
The morning shift arrived, and we were so happy to see Angie and Nichelle as part of Don’s care team today. Both have such wonderful senses of humor and are very compassionate nurses. Having them help us through the day made it all that much easier.
Dad and Nichelle,
one of the nurses who cared for him.
(Taken November 12, 2011.)
Angie shared a funny memory she had of Don when they went down to the jukebox. She was encouraging Don to press the buttons. He had his head down and she came up with a funny rhyme and Don being a leprechaun and going to school with nothing on. She said that Don’s head immediately shot up as he looked at her and what she said. “Did you ever go to school with nothing on, Don?”
“No, I did not,” he said with a smile.
It was so funny – and we all laughed. Knowing that Don had someone at St. Therese who felt comfortable joking around with him…and him being able to connect and enjoy the jokes of those who cared for him completely made our day.
Of course, now we will probably always be thinking of Don the Leprechaun…but in a happy way…especially around St. Patricks’ Day.
One of Don’s little brothers through the Big Brother/Little Brother program was able to spend some time with him this morning. Thankfully, Greg’s mother had his cell phone number and was able to contact him to let him know what was happening.
Greg, one of my Dad's little brothers.
Later, Tom H. came by to visit with Don. We talked about how Don was always an “Epiphany Baby” since he was born on January 6 (Don will be 80 years old on Friday, January 6.)
Jim brought the picture that Tom took of Don dressed up as Santa Claus on December 21. We put that next to him in the alb and stole as he baptized a baby.
Dad in the Santa suit he wore for so many years.
(Taken on December 21, 2011.)
We had another scare around 10 a.m. when Don was being cleaned up, washed up a bit so he would feel better, have the pillowcase changed, and his gown changed. In repositioning Don, all of a sudden he had a seizure.
Angie immediately motioned Ann and Jim to the room, and explained that a seizure had happened. Don’s eyes were partially open still and he was coming out of the seizure, so that was difficult to see.
Ann and Jim went to hallway to get Dorothy to tell her it was time to come back to the room. Apparently from our faces she could see something was wrong. “Is it over?”
“No, Mom, Dad is still waiting for us,” Ann said.
Dorothy, Ann, and Jim sat around Don’s bed and held his hands. It was very sad and we were sure that time literally was moments away.
Gradually, Don’s breathing stabilized and he seemed to be resting peacefully.
[Throughout the day, we had 8 visitors.]
Ann reviewed some of the wake/vigil and funeral plans with Dorothy. She was able to listen to, approve, and offer suggestions for the vigil and half of the funeral plans. She needed a break after a while which Ann said was fine. They would discuss the details at another time.
The night shift came on and Bruce will be working again. He asked how we were all doing, and acknowledged that it has been a long process. I think the staff here is as equally surprised as we are how long that Don has held on despite not having food or water.
At 3:42 p.m., Don is still resting comfortably. However, his hands and feet are now cool to the touch, his face and chest are warm and feel as if he has a fever again.
[That evening] Ann’s cell phone rang. It was Butch – one of Don’s Little Brothers through the Big Brother/Little Brother program. Ann talked with Butch for a while to update him about what had happened since he and Don enjoyed a meal together in late-September. She asked if Butch wanted to say anything to Don, and that she would hold up the phone to Don’s ear so he could hear what Butch was saying.
It was an emotional call for Butch (and for Ann who was thankful to have been able to hold the phone so Butch could connect with Don one last time). Hearing how Don has impacted the lives of Butch and so many others has given her an even greater sense of how truly special Don is and the way he chose to live his life to help and serve others – through friendship and ministry.
Photo board that shows some aspects of
my Dad's religious life as a deacon.
The larger black and white pictures on the right side
are of his ordination at the Cathedral of St. Paul.
Thursday, January 5, 2012
Around 5-6 a.m., Don’s respiration rate increased to 36. Ann thought perhaps she had counted it incorrectly, but Charlotte came in and said she did it correctly.
Ann read aloud messages to Don and Dorothy from the CaringBridge guestbook. Shortly after, Angie came in and checked in with how we were all doing.
About 6:15 a.m. Don’s breathing was gradually getting down to a more normal rate – 24. Angie checked in again and spent time with Dorothy and Ann. After checking his feet and looking at him, she recommended calling Mary and Jim. Ann called Mary and Jim and told them to come right away. At this point, we thought there would be a couple of hours.
About 6:45 a.m., Don’s breathing became more spaced apart. Ann and Jim noticed that something was different with his breathing. He took a couple breaths, and then he was quiet.
Angie came in and took a look at Don and shook her head. Dorothy did not see this. Angie notified Lana to come in and Lana knew just looking at Don. She did a check for his heart rate.
Jim and Ann knew what had happened, and were in tears. It happened at 6:57 a.m.
Dorothy still, at this point, had not realized that Don had died. Lana had to tell her. It was so peaceful.
Angie and Lana encouraged Dorothy to lay down next to him on the bed, so we did some re-arranging of the furniture. Ann covered Dorothy with the prayer shawl and quilt from the Angel Quilters.
“To me a happy death is not a prolonged death. It is not painful. I think he had a happy death,” Dorothy said. “And he held my hand until the very end.”
We got Dorothy settled next to Don on the little couch. She has been holding his hand now for over an hour and ten minutes. She wanted to make sure he was covered with a blanket. We used the photo quilt to place over him.
Dad looking at the sensory/memory quilt I made for him.
He picked out many of the photographs for the quilt,
but did not know what I was making until he opened the box.
He had been diagnosed with
mid-stage Alzheimer's Disease in May 2009.
(Taken on December 27, 2009.)
“Please cover his hand, Ann. Keep him warm,” Dorothy said.
“I will, Mom,” Ann said.
Dorothy shared some thoughts about how Don will continue to encourage people – whether it’s to be an Eagle Scout…to be a priest…or simply to help and serve others.
Jim met Mary on her way down to Don’s room. She was prepared then when she came into the room.
Dorothy had stepped away to use the restroom, but was worried about not holding Don’s hand anymore. Ann assured her that she would be there with Don and would watch over him. She felt okay to leave then for a moment.
Mary, Jordan, and Colton came in. Ann filled in Mary with what happened.
Don now is on his bed with the little corgi dog puppet sitting at his feet. His dog that he loved and missed was a faithful companion and always would sit at someone’s feet if they were sick.
Two stuffed animals that Dad had
to provide comfort to him.
At 8:15 a.m., Dorothy, Ann, Mary, Jim, Jordan and Colton are gathered in the room with Don. Pastoral Care will come down to spend time with our family
notifying people that my Dad had died.
When the staff saw the symbol, many came in that morning
to visit, share a memory, and say "goodbye."
“Our dear one went to heaven,” Sr. Ruth Ann said as she entered the room. She gathering some staff to do a prayer service for Don. We shared some memories and thanks to the staff.
It’s been a long journey this week – from Sunday afternoon to Thursday morning. However, we were blessed to have had this much time to spend with Don together, and be with him as took his last breath on earth.
This is part of my Dad's obituary:
Survived and dearly missed by his wife, Dorothy. Throughout their 47-year marriage, they raised 3 children – Ann, Mary, and James.
Mom and Dad with Mary, Jim, and me.
(Taken May 8, 2011.)
Dad and Mom with their grandchildren.
(Taken October 9, 2012.)
He will be dearly missed by his family; brother and sister, Richard and Marilyn, and their families; nieces, nephews, and other relatives; and friends.
Above: Dad with his sister, Marilyn.
Below: Dad (on the right) with his brother, Richard.
A dedicated and hard worker, he was the Minnesota School Social Workers Association’s first president; a social worker at Patrick Henry High School for many years; and an ordained Catholic Deacon through the Archdiocese of St. Paul and Minneapolis. He was a deacon at St. Joseph the Worker.
Dad in one of his albs
that he wore as a deacon.
Don was a true gentleman with a great sense of humor. He was considerate, kind, and always willing to help others. He befriended and served others – even with Alzheimer’s Disease. Don was a strong believer in service and volunteering, and made a positive impact on many lives through Big Brothers/Little Brothers, Boy Scouts, and church.