Speaking of Care

Henry and Alzheimer's

Alzheimer's is a progressive and fatal brain disease caused by nerve cell death and tissue loss.  While scientists still aren't sure why this happens, they think it has to do with plaque buildup and tangles between the brain cells.  Over time it affects all of the body's physiological functioning, but it is most damaging to areas involved in thinking, planning, and remembering.  It is the most common form of dementia, but is markedly different from regular forgetfullness- a good distinction is that memory loss is when you can't find your keys; Alzheimer's is when you don't know what your keys are or what to do with them. 

Henry was diagnosed in 2006, but I had seen the signs for at least 10 years building up to that-  symptoms of the disease are often present up to 20 years before diagnosis.  He made some questionable real estate decisions while living in Texas that would have been out of character, had his brain been functioning normally.  He moved back to Evanston while I was still at DePaul, and we spent a lot of time finally getting to know each other. The red light came when he tried to visit my sister in Austria for Thanksgiving.  I helped him pack, left detailed instructions on what to do in advance and did everything I could to ensure a successful trip.  The call came late that night that he was stranded in Washington DC- he had missed his connecting flight because he swore his passport had been stolen and they wouldn't let him on.  It was found two days later in the jacket he left in the overhead bin.  The man who traveled for a living as the president of an international insurance agency was unable to remember how to board a plane anymore.

The next year I moved back to Evanston and it was obvious that things were getting worse.  At my urging, he reluctantly got an evaluation from Dr. Aaron Malina, a neruopsychiatrist at NorthShore University Health System.  At the time, the diagnosis was just vascular dementia and depression.  He finally agreed to take an antidepressant, and shortly thereafter he humbly asked me to manage his checkbook.  I was in shock when I saw it- he hadn't paid rent for two months, other things were paid twice, nothing was recorded correctly, and whole months were missing.  At this point I knew things were worse than I thought- he had obviously been hiding his decline for a long time and for him to ask for help was huge.

What started with a financial takeover quickly escalated.  Before long I was taking him grocery shopping, arranging all of his medical appointments, making casseroles that he could heat up, and doing everything else involved in daily care.  It became obvious something was critically wrong.  The Alzheimer's diagnosis a few months later saddened and scared me, but it wasn't a surprise.  In some ways, it actually was a blessing- I could now insist that he get some help.  He had always resisted caregivers or day programs, and I finally told him that I couldn't manage by myself anymore.  After much cajoling and threatening on my part, he agreed to a caregiver three days a week, for four hours.  I quickly upped it to six days a week.  Even with Gerry over in the mornings, I was still going over twice a day to make dinner and check on him.  Although he was under the watchful eye of his wonderful neighbors, it was too much for me.
Feb 2009, at Three Crowns
In November of 2008 I packed up what remained of his possessions and moved him, kicking and screaming, to Three Crowns Park in Evanston.  He made it three months before being kicked out.  He then spent a month on the psychiatric unit at Lutheran General Hospital, and a month at the Wealshire in Lincolnshire for "medication management".  He had been blacklisted from the other assisted living facilities in Evanston and I was at my wit's end before finding Belmont Village, in Glenview.  They welcomed him with open arms and he was able to stay there more than a year.
March 2010, at Belmont
On New Year's Day, 2010, I found him unresponsive in bed and they called 911- he had a severe undiagnosed infection and had had a series of small strokes.  He was in the hospital for six days, and on the fifth day I called Midwest Palliative and Hospice Center.  Since then, I have turned to my team of doctors, nurses, social workers, and CNA's for support and guidance.  I cannot say enough good things about Hospice.  They are there for everything, from supplying diapers to helping pick out urns.

Dad pulled though, and ended up back at Belmont with a private caregiver.  However, the cost of such intense care quickly ate up his assets- he was going through over $10,000 a month.  I had no choice but to find a nursing home that takes Medicaid, and in May 2010 I moved him to Maryhaven Nursing and Rehabilitation in Glenview.  It's the last move for him- Medicaid will cover room and board forever, and since he's DNR and on Hospice he'll probably never go to a hospital again.  He spends most of his day sitting in his wheelchair, staring at the television and swearing at it when he gets frustrated.  On a good day the staff can take him out to activities for short periods of time before his agitation takes over.  I try to make it out twice a week to visit and break up the monotony.  He usually doesn't know my name, but he knows I am his daughter, the person who has been caring for him, and who loves him.  And I know he loves me back. 


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