Dad's last 3 weeks
April 16 - May 8, 2015
I'm Arvin Hagen's daughter, Cindy Hagen Lukas. I had the good fortune to spend much of Dad's final three weeks with him, and will forever be grateful for that precious time. I'm sharing this for others who didn't have that gift.
Week 1
I drive from my home in St. Paul, MN to visit Dad in Maple View Memory Care (Fargo, ND) on April 16, 2015. He hasn't seen my teal blue hair before and looks at me quite strangely at first. Dad recognizes me, though! One of the residents tells me that Dad is a very gentle, kind man who enjoyed greeting people at Easter. That doesn't surprise me.
Much of the time, he's been in his own John Deere work world. This principled, conscientious man LOVES to work, but seems concerned about getting his responsibilities done. We assure Dad that his business needs are being managed by competent staff. That seems to help, but we can't always understand him.
My mother, Bev Hagen, was told earlier that Dad needs to move to a skilled care facility. She hasn't been able to find a suitable new home, and is at her wit's end when she learns of a vacancy in the memory care unit in Rosewood on Broadway in Fargo. She is so relieved!
We move him the very next day. As Mom is packing his things, I place new headphones over his ears so he can listen to the barbershop quartet music I've downloaded on a used iPod shuffle. Although there have been claims of Dad being hard-of-hearing over the years, he has NO trouble hearing the conversation in his room while listening to music. I say, "Mom's the most organized person I know," to which Dad smiles and replies, "Yes. If there's a way to get things organized, she'll find it!" (I'm inclined to believe that he hears just fine :). He hums some of the bass lines to familiar barbershop quartet songs, which I love hearing. I have always enjoyed listening to Dad's deep, rich bass voice.
We leave his room to find a bevy of beauties waiting outside the door - female staff and residents alike wish him well, give him kisses and hugs, and say they'll miss him. Dad smiles all the way down the hall, with three staff members walking in front and alongside him. He slowly walks to the car under his own steam, although getting into Mom's car is a bit challenging.
Dad sits in the front seat and I'm in the back of Mom's car as we travel to the new facility. He's very alert, looking side to side and accurately reading signs out loud clearly as we pass them. I'm surprised and think, maybe he just needs more stimulation? If only it were that simple...
We arrive at Rosewood on Broadway and Dad gets a wheelchair ride to the 2nd floor. There's a lot of activity, but it seems like a cozy small community with a common dining room and nice sunroom with comfortable recliners and a TV that often plays Lawrence Welk specials on DVD. Dad particularly likes the sunroom's lower windows and watches outside activity through them.
All goes smoothly until it's time for us to leave and two staff begin to help him walk towards his new room. He doesn't like the blue belt used by the staff to help support him on each side, but is making progress when he turns back toward us and loudly and clearly says, "BEVERLY, WHAT'S GOING ON???" I quickly go to Dad, hug and remind him that he's going to his new room, reassure him that he's safe and will be fine here, that it's time for us to leave, and we'll return the next day. Dad calms down and continues down the hall. Although we both feel comfortable with the new facility and know he needs to be here, it is so hard to leave him!
The next day, Dad actively resists staff efforts to help him stand up from the comfortable recliner with the blue belt wrapped around him. It's almost as if he's saying, "Fine! If you're going to make me wear this uncomfortable belt, I'll make it REALLY hard for you!" He remains as stiff as a board, with straight locked knees, heels dug in and toes pointed upward, as they eventually pull him out of the chair.
Over the next few days, Dad continues to be chatty and greets others warmly. There are concerns about his back because he grimaces in pain and says it hurts. He absolutely hates the support belt, which is new to him. Because of the pain, staff find a padded support belt, which seems more comfortable. At first, Dad is independently eating regular food and clearing his plate. He's always had a good appetite. He's a little punchy because of the pain and disorientation, though, and is given calming medication and pain relievers.
There are visits to doctors to investigate the cause of his fairly dramatic weight loss and assess his current neurological status. He's down to 127 pounds, which isn't much on his large frame. Although his appetite is good, he's become so thin. Multiple tests rule out major complications like cancer and a compression fracture in his back is discovered. It could be due to brittle bones and an additional test is discussed, but not immediately scheduled. He's determined to be in the late stages of Alzheimer's or other dementia, which doesn't surprise us. Dad, Mom, my older brother, Allan, and I attend the appointment with the neurologist. It's particularly telling when Dad creates a new phrase that we've never heard before to name a pen and can repeat one or two simple words in a row, but not three. He's alert and smiles, but doesn't always make sense. I hold his hand during most of the appointment.
Mom continues to stop by for daily visits. It HAS to be difficult for her, but she doesn't complain. During this time, it's not clear whether Dad always knows I'm his daughter, but he typically smiles when I arrive and seems to enjoy my company.
I talk with him about his situation - mostly monologues. I assure Dad that his family loves him and will miss him after he's gone, and emphasize the importance of his making choices about what's best for him and not worrying about us. We'll be fine and it's our turn to care for him. A few times, mild tears seem to appear in his eyes. I try to remain positive, but sometimes I cry. After a brief explanation, I typically leave Dad's side to continue crying alone, because I don't want to upset him.
One day, Dad, Mom and I attend church in Rosewood's chapel. He's sitting in a wheelchair between us. Dad takes Mom's hand and holds it, while I hold his other hand. Attentive, he turns back and forth to look at us and smiles. It's been awhile since he's attended church.
The unit has life-size soft baby dolls. One is dressed in what appears to be one-piece boy's pajamas. I give this baby doll to Dad and he beams with pleasure. He's always loved children. He talks and sings softly to the baby, cradles it gently, and briefly seems happy, although he's concerned about dropping it. I assure him that we'll take care of the baby together and that he's doing great!
Week 2
Dad begins resisting opportunities to eat. He's much shakier and starts refusing solid food. At first, he's willing to drink Ensure and eat soft foods like cold pudding and ice cream that others help him drink and eat. He's become stiffer, stopped walking and uses a wheelchair all the time. One day, he's very agitated, disoriented and too shaky to drink out of a glass. Dad seems increasingly withdrawn and sleeps more of the time. He's slipping away, and there's nothing we can do about it. We feel helpless, but keep his favorite music playing in the hope that it will comfort him.
I try to spend as much awake time with Dad as possible, but I'm just as happy to sit next to his bed while he's sleeping and hold his hand. Several days, I take him outside in a wheelchair because the weather is so warm and beautiful. Spring has finally arrived - at least temporarily.
I'm not sure what name to use, so ask if I can call him "Dad." He shakes his head and clearly says "no." When I ask if I can call him "Arvin," he nods and says "yes." Later, he tells me that he has a wife. The next day he's more alert and says he's been talking with "Mom." He only says that when talking with my brothers or me about our mother - his wife, Bev.
For the most part, he talks very quietly and it's not usually possible to understand what he's saying. He's often frustrated at his inability to make himself understood. The staff begin using a hoist lift to move Dad between his bed and a wheelchair. This makes movement smooth and doesn't seem to cause any pain.
One day, Dad feels hot so I check with the nurse. He has a temperature of 103, so is given Tylenol to get the fever down. Staff puts cool compresses on his forehead and dresses him in a t-shirt and light pants, with only a bedsheet for cover. His fever comes down.
On Wednesday, Mom and I visit for several hours in Dad's room while he's sleeping. Mom leaves and Dad is moved to the common area, where he can be around people and listen to Lawrence Welk and old movies on the TV.
Staff later return Dad in his wheelchair. As he's sitting next to his bed, I tell Dad I'll be going home the next day. In response, he turns and very clearly says, "I love you!" I tell him I love him, too, and hug him. He turns his cheek so I can kiss him, then he motions for me to do the same so he can kiss me back. His lips barely move, but I leave feeling very blessed.
The next day, I briefly stop by to say good-bye and explain that I'm taking his cloth handkerchiefs because I'll need them on the drive home. He doesn't say anything, but watches me and refuses to release my hand. He still has a strong grip. I drive home and rest for a few days.
Week 3
I receive a call on Sunday from my older brother, Allan Hagen, who says that Dad has quit eating and drinking altogether, begun spitting out all medications, and has continued to lose weight and become weaker. Based on Allan's assessment and his discussion with the nurse, who verifies that Dad is unlikely to be alive much longer, I return to Fargo the following Tuesday.
Dad has become increasingly non-communicative and remains in his bed. Sometimes, he appears to watch with narrowed eyes, but we're not sure what he sees or understands. Most of the time, his eyes are closed and he no longer tries to talk. He's flushed with a lower fever and his lips and tongue are dry due to the lack of fluids. He's in hospice now, and given morphine and anti-anxiety medication for comfort.
His breathing is very raspy; it sounds painful. We would do ANYTHING to keep him comfortable and the staff are being very attentive. This process is so hard to watch. We're grateful that the two pastors from Dad's church stop by. Two of Dad's nieces - Paris and Rio Baca - also stop by to tell their beloved uncle how much they love him.
I stay through Wednesday night because there's some concern that Dad might not make it through the night. I talk with the night nurse about whether to call my mother. We agree that I will watch his condition and call her if his condition begins to change. She has been so busy making arrangements and needs to get some sleep. There aren't any changes, so I leave at 5:30am, knowing that Mom will be back later this morning.
Allan and his wife, Marla, drive down from Grand Forks ND on Thursday because it's clear that Dad's time is limited. My niece, Audra, and her husband, Corey, also stop by. Dad now has a noisy oxygen tube in his mouth, which makes his breathing less raspy. My mother joins us for awhile, we surround Dad while sharing stories, and Marla gently holds his hand while quietly singing to him. It's comforting for us, but there's no sign that Dad can hear us. His arms are so cold and clammy. We've never felt anything like this before.
I remain in Dad's room while Allan drives Mom and Marla back to Mom's house; then Allan returns to sit vigil through the night. I'm glad that Allan has this time to talk with Dad and hold his hand. The nurse checks Dad for "mottled skin," which is purple and splotchy. When found, it signifies that one's body is shutting down. Dad has splotchy knees and the soles of his feet are light purple. Allan and I talk for awhile, and I leave to get some sleep.
Several hours later, Allan calls to say Dad's fingers are gray, so we return quickly. At about 5:45 a.m., Dad takes his last breath. It's smooth and Dad just gently quits breathing.
Personally, I believe that moving to the new facility and having the blue support belt put on him were turning points for Dad, when he decided it was time to go. After that decision was made, the end came fairly quickly. This would match the way he lived, with courage and on his own terms. We already miss him, but are very grateful that Dad's frustration and pain have ended. This wonderful man is finally at peace.
