Alzheimer's changed RF couple's future
A River Falls couple was planning their future retirement life when they settled on their property out in the country. They had plans of having animals and growing their own organic fruits and vegetables. But now the husband said it is hard to believe those hopes and dreams they shared will not come true.
Shawn Collins started noticing something was wrong with his wife Christine in 2009, but he had no idea what.
"I'd come home from work and the chicken coop door was wide open and she'd say the lock was broken," Collins said. "[But] nothing wrong with it [lock]."
He also noticed she would leave the faucet running after she turned it on, her impeccable handwriting became like chicken scratch, and Christine stopped reading and knitting. In February 2009 they went to an organic conference where Christine went to an all-day session on organic fruit tree growing. After the entire day of sitting in the session Christine hadn't taken any notes.
"I didn't know what was going on," Collins said.
In 2010, Collins said he had to tell Christine she couldn't drive anymore because she had three minor car accidents within two months; previously she hadn't had any accidents.
"I told her she had to stop driving and get to a physician to see what was going on," Collins said.
The doctor visits started in 2010. For two years they searched for a diagnosis and explanation as to what was wrong. Collins said they ruled out a brain tumor, contaminated water, Lyme disease and depression. Finally after two years of tests and appointments, a doctor at Noran Neurological Clinic did a spinal tap which showed that Christine was in the 99 percentile for having early onset Alzheimer's. Collins said previous doctors weren't even looking at Alzheimer's.
"For us the hardest thing was getting an accurate diagnosis because no one was looking at Alzheimer's because she was so young and no family history [of Alzheimer's]," Collins said. "We went to several doctors early on who said it wasn't Alzheimer's but untreated depression."
Because of the early onset Alzheimer's, Collins said he and Christine eventually had to stop working.
"She had to quit her job at Gillette Children's as a nurse in July 2010," Collins said. "January 2014 I quit my career as a nurse anesthetist at the VA to take care of her."
For the last couple years, Christine has been unable to talk and walking has become difficult as she has visual spatial variant.
"She does not know where her body is in space," Collins said.
In addition, Collins has had to adapt how he prepares meals for Christine.
"She can no longer use a spoon or fork," Collins said. "It's all finger foods. Foods that you wouldn't think are finger foods become finger foods, like lettuce salad. [She] can't use a flat plate because if food falls off, she can't see it. Peripheral vision is gone."
Collins said the struggle to pay their bills and continue to live where they are has been hard. He is too young to qualify for Social Security and not yet at retirement age, and Christine was only able to qualify for Medicare Part A.
The couple received a $2,000 grant through Pierce County that helps pay for the once a week day program at the Salvation Army in Maplewood that Christine goes to. During this time, Collins is able to do his errands and appointments while Christine is at the day program. It also gives her some time away. However, Collins is worried that Christine won't be able to go to the day program much longer.
"It is difficult for her to get in and out of a car or sit down in a chair," Collins said. "I am afraid for her ability to go to the adult day care program is coming to a close here."
Collins said while Christine doesn't need constant nursing care she does need 24/7 supervision. He said he has been fortunate to have the help and support of his neighbors.
"Fortunately we have wonderful neighbors who have helped us stay here," Collins said. "Our next door neighbors, I can't say enough for them. They would literally give you the shirt off their back and then some."
Recently, Collins said Christine qualified for hospice, so hospice will come in and help with some basic needs, such as helping Christine with a bath. Hospice will also help as the disease progresses and provide nursing staff when needed.
To find support, Collins went to a few support groups for the typical Alzheimer's family/caregiver. But he said those groups didn't provide him with what he needed. He was about 20 years younger than anyone else in the group. While many of them were in the retirement stages of their lives, Collins said he and his wife were at their peak earning age when this happened.
He was able to find a support group at Bethesda Hospital for early onset Alzheimer's. This group has helped him. Also, the support of his church White Bear Unitarian Church in Mahtomedi has been helpful.
"They've been wonderful," Collins said. "Pastoral care person that comes out regularly. The support of church has been great."
Even with the support, Collins admits it is still difficult to see the life they planned together is no longer an option. They still watch television together, listen to music and enjoy some time outdoors. But it is not the life he had envisioned for them.
"It's just [makes you] question your idea of what retirement was going to look like and the rest of life is topsy turvey, kind of hard to reconcile that," Collins said. "It's an incredibly long drawn out grieving process. The worst thing is losing the companionship as well as losing your spouse and all your hopes and dreams."