2012

 A detailed food chart hangs on the door of the kitchen pantry in a typical Carol Stream home. Phone alarms ring at scheduled times for various activities like exercising, eating and going to the bathroom. These are ways Tish Crawford used to organized her three kids’ lives and busy schedules while they were growing; now this is used to take care of her husband Tim. 

Tim Crawford is a 54-year-old man living with Frontotemporal Dementia, or FTD. This is a rare form of dementia that involves the frontal lobe of the brain slowly deteriorating. The frontal region is responsible for reasoning, planning, parts of speech, movement, emotions and problem solving, and is said to be where your personality lives. Diagnosis of this disease has been made in people as young as 30, but usually occurs and is diagnosed in one’s 50s or 60s. 

 Tim was diagnosed with FTD in 2012 after numerous doctor’s visits and tests when he could no longer perform his job as an Apple technician. He started to have outbursts of anger and then fell into almost compete silence as his symptoms progressed. 

“I prayed to God and said I just wanted my husband back and if you cant give him back to me I just want him to interact with me. Let him talk again because I can’t stand this person who just stares at me and doesn't know what to say,” his wife Tish said. 

   “The change in him has been extremely drastic since his diagnosis,” Tish said. “Mentally Tim is now a child. We raised three kids together and now its like he’s my fourth kid.”

 "Not only is it painful for him, its painful for those taking care of him. It’s a total loss of control” Tish said. “Coming from such a high IQ that he had, its just hard, I think his mind just couldn't take much more. He always excelled at everything, I don't know, I don't know.”

2014

Over a year ago I was lucky enough to be invited into the Crawford home to document their lives. The little time that I was able to spend with them before heading back to southern Illinois was eye opening. Tish and Tim are the centers of the household, but the dynamic has changed drastically over the last couple years. Tim was diagnosed with Frontotemporal Dementia, or FTD, and now needs around the clock care. 

    Now that I live in the area again I have spent some long overdue time with the family. Since my last visit Tim has changed drastically. He no longer speaks and his favorite toys are made for toddlers. He communicates through repetitive mumbling, an occasional sentence and flashcards. Many people at this stage of the disease have moved to care facilities, but Tish is determined to keep him home.

    “I can take the best care of him, I know what he wants and needs even if he can’t tell me,” Tish said. “This is where he belongs and he will be here until the end.”   

The only sign of Christmas at the Crawford home this year was a lone santa hat. Tish decided to cancel Christmas. 

    “It is just too hard,” Tish said. “I know the kids are still going to get me things, but I just couldn’t do it this year.”

    Even with the help of an in home nurse Tish still spends all of her time outside of work taking care of Tim. Besides the basics of feeding him and helping him get to the bathroom she is dedicated to keeping his mind stimulated. They play games and put together puzzles, even if she can not convince Tim to participate. 

    For Tish this holiday season was just a series of days, days that were filled with caring for her husband.

2015

Spring

 As Tim’s disease progresses he is quickly losing more and more functions. A recent CT scan shows extensive degradation of the frontal lobe. Often Tish is asked why she doesn’t just put Tim in a care home. Family, friends, nurses and even strangers all seem to have an opinion on what she should do and how they should live their lives.

    “This can be the most frustrating thing,” Tish said. “Everyone thinks they know better than me and tries to tell me what to do, but none of them are living this life.”

    Tish insists that Tim will live the rest of his life in the comfort of his own home, surrounded by the life he worked so hard to build and the people he loves. 

Summer

This weekend Tish and Tim celebrated their 29th wedding anniversary. In those 29 years they bought and rebuilt a house, raised three children, argued, laughed and took every step in life together. Now their children have grown up and are out in the world, but Tish still has caring and nurturing to give. She devoted her life to Tim all those years ago and that devotion has not diminished in the slightest. Tim may be sick and they may not have as long left together as they deserve, but this is after all forever love. 

Fall

2016

Spring

  In the last few weeks Tish has determined that Tim is too weak to move around the house as much as he was. This included walking to the bathroom for showers and the bedroom for diaper changes and to sleep. The living room has been converted into a space to fully care for Tim. He now sleeps on a specialized bed each night while Tish spends the night on the couch. He is bathed in this bed and fed from his favorite chair. He spends the day watching TV and cuddling up to his interactive toys. His response to music and talking toys is now much more elevated than his responses to activities he used to engage in. But his personality still shines through in his interactions with Tish. When he needs to be washed or moved he will usually throw a small fit by making faces and loud sounds. But even these fits are endearing to Tish sometimes. She will smile and laugh if he fights his way through a bath because it reminds her “what a stubborn ass” he can be. Tim has since been placed on hospice and is spending most of his time in bed. 

   As Tim’s health continues to decline the next step in his care was to place him on home hospice care. Tim has been suffering from dysphagia, or difficulty swallowing, so Tish has taken steps to keep him from choking and to keep him comfortable. Currently his home hospice team is just extra help during the week with bathing and monitoring his health. But eventually Tish hopes to find a company that offers in-depth end of life care and support for the family. 

    The last few weeks Tish has been working from home five days a week in order to care for Tim. She works from the living room right by Tim’s bed so she can provide him with anything he needs. His difficulty swallowing requires great care to keep him from choking. Tish uses a home care suction unit to keep his mouth and airway clear of any fluid. She also takes precautions when providing Tim with food and water. A thickener is added to his water to aid in the swallowing process and is given from a turkey baster to control the amount and flow of the liquid. He is fed homemade pureed food and high calorie smoothies to keep him nourished. 

    Through all of the difficulties Tim is enduring his affection for Tish still shines through in his actions. She will climb into bed with him to cuddle for a while and if she tries to leave he will hold on to her side or shoulder to keep her close to him. He still strokes her hair and face when she leans in for a kiss or to talk to him softly. The love is still there in every move they make. 

This week Tish’s priority was keeping Tim hydrated and comfortable. At this point Tim is having great difficulty swallowing anything so with every bit of water Tish gives him she massages his throat to help with the process. She also decided that it was time to add pain medication to the routine, Tim is given morphine every few hours. Tish continued to monitor his vitals and keep a close eye on him. His discomfort is is written on his face, but a touch from Tish seems to sooth him and allows him to rest. 

Even with Tim entering Hospice stage Tish is still working 40 hours a week from home. She works from early morning to late afternoon while still caring for Tim’s every need. Twice a week her mother comes to sit with Tim while Tish is working. She will read to him and hold his hand and let Tish know if he seems to need anything. Tim seems to be able to rest a bit more this week and is content holding onto his favorite toy and watching the TV flash through different cartoons. 

April 4th

Tim can no longer take in fluids, his brain has deteriorated to the point that he does not know how to swallow. Dehydration has set in, but medications are keeping Tim comfortable and allowing him to rest. Tish laughs with her friends and family as they tell stories about how hilariously stubborn Tim could be. Timmy, the Crawford’s middle child, rests with his dad after a Pastor read Tim his last prayers. People are flowing throughout the house the whole day and into the nights to spend time with Tim and say their goodbyes. Tim passed away that night, surrounded by the people he loved.

April 7th

Tish now plans to create a support system for families caring for a loved one with FTD, and publish a book about her experience. Tim could not have been more loved by his family.