Grand Rivers, Kentucky
Today was a day to almost celebrate; there was information on Alzheimer's disease on the national news, my local news, USA TODAY and my Newsweek in the mailbox. And the need to get information out to the public is crucial to everyone.
My personal descent into this tragic disease began with my mother. She and dad had retired to southern Arizona to enjoy retirement and each other. This was 1996; they were both in their late 70s, in good health and had planned to be able to live comfortably.
The first few years were just that. Then when visiting, I started noticing little things (the things that no one else would notice because it wasn't their mom), mostly off the wall comments, forgetting to pay a bill on time. My dad just took it to being just how mom was. She was never very tidy or organized.
Then at my daughter's wedding, I noticed more. A different look in her beautiful eyes, how she would laugh at something in a different way. But what made the alarm go off was she couldn't finish reading her book. You see my mom was a retired librarian, and all my life she was always reading something.
She loved books, any book. She had cookbooks from all over the world from her travels. She now would pick up the book, but never got past the 1st chapter. My husband found her walking down our road; thankfully we live in the country. With much hounding with dad, she went to her doctor. On returning to Arizona, I sent her doctor a letter letting her know what I was seeing. At this time, my dad could not believe that we might be facing Alzheimer's.
After the round of tests, our downward spiral for our family began. Dad still felt he could keep a handle on things. When she was unable to locate her car in the parking lot at the local Safeway, he would follow her and make sure she found it.
Things took a turn for the worse in 2001. Mom had abdominal aneurysm surgery (big mistake); she was never the same after that. Her stay in the ICU was longer, as well as her overall stay. At times, she didn't know me or Dad. I understand now that surgery can have a devastating effect on the brain when Alzheimer's is involved.
Her car never left the driveway after that. She also let Dad's life insurance lapse as well as their health insurance. I flew out to Arizona, and after much talking on the phone, luckily with some very understanding people, we were able to get things back on track.
By this time, Dad knew how things would have to be. We tried day care services, which sent Mom up the wall ("I'm not like all these people"). We started Aricept, and I came back home to Kentucky. You see, I am an only child. It was during this time that they had started having a cleaning woman come in (another big mistake). On one hand, Mom thought she had an ally, but at times resented this woman. After bits and pieces of conversation from Mom, I told Dad to get rid of her and he did.
We were now at the time of Mom going through the Rolodex from A –Z, talking to who ever would answer. "Free for 14 days" books started to arrive, with charges to their credit card. The hardest thing was finding that Mom was buying boxes of condoms and hiding them. What grown child would think they would see the gradual role reversal in such a way?
Christmas 2003 would be the last our small family would spend together. Dad got his nerve up and he and mom flew to Kentucky. In the three months since my last visit, the change was sobering. She would not leave Dad's side for more then a few minutes. She would look to him for any instruction. At first, she wasn't sure if she knew her two granddaughters. As the visit wore on, she did.
When they flew home, they had a layover in Dallas. My dad turned his back and she was gone. I mean gone. They found her almost to the next terminal. Traveling days were over for good.
One month later, all the dominos started their slow continual fall, the dreaded call. Dad had fallen on the patio and broken his hip. I was there the next day. Before Dad's surgery, we both knew I would need to take mom home with me. No problem. I had an empty nest house with three empty bedrooms, a big bathroom and a husband who said for as long as it takes.
One thing Mom did before she started to get lost in the fog was set up power of attorney, living wills, wills and updated their burial insurance when they moved to Arizona. But before I brought her back with me, Dad turned over his power of attorney to me, and her doctor gave me documentation as to her condition. You see, I also started to "learn as you go".
I got Dad settled into the rehab and knew that we had about 21 days to make some serious decisions. Dad fell and he had to crawl back into the house. He didn't get help until the next morning when their stockbroker called and Mom casually mentioned what happened.
I knew I couldn't take Mom back to Arizona. I knew she would not know me when I went back out there. Dad could not take of her. He healed well and was mentally 100 percent. After much begging and crying, he agreed to sell the house, stay in Kentucky with us until we could figure out a game plan, one that wasn't going to financially suck them dry.
Back in Arizona, we put the for sale sign up and flew him home. We hired a sitting service to stay with Mom during the day, and my husband would look after her at night.
Thankfully, the house sold within a month at full asking price (the only bright spot). Ten days after bringing Dad home to Kentucky, Mom fell at my house and broke her hip. The dominos started to fall little faster.
Her doctor who did her surgery worked with the issue of her Alzheimer's and gave her less anesthesia and a saddleback as well. She recovered well, and we started checking out the nursing homes that offered rehab and would be able to deal with her Alzheimer's. All this while taking care of my Dad, who was getting around with a walker and just had his whole life redirected for him.
My employer is Wal-Mart, and I had support from my managers from day one. I will always be thankful to them for letting me take longer lunch hours to take care of Mom and leaving early to find a nursing home.
During my appointment with the facility that I thought would be the best, I kept asking them, "Are you prepared to deal with her Alzheimer's?" First, because she doesn't remember she broke her hip. Bed alarms were my biggest issue. Yes, yes to all. They wanted to know who was covering the bill.
With residency still in transition, that was a nightmare. But after giving them a rather large deposit, until all the red tape was untangled, I felt I had found the right place. So everyday, I went with a loving heart and fresh flowers. On my lunch hour and Saturday, I watched my mom slowly give up.
She was bathed, cleaned (so I thought) and having her rehab. Then back to work, then back to see mom, then home. I would fill Dad in, watch the news with him and cook dinner. I also tried to get in some laundry, and then it was to bed.
On my days off, I would load Dad, the walker and wheelchair into my car and off we would go to the nursing home. To see my mom light up when "her Jackie baby" came into that room, I will never be able to put into words. During the week, he and my husband would go to visit.
Easter weekend, I flew back to Arizona for the last time. I had a huge moving sale. Sold the cars and put into storage the important things and furniture. I would find a mover later, which I luckily did.
On April 22, 2003, I received a call from the nursing home that Mom had been found on the bathroom floor. "How long?" I asked. No one seemed to know. She was headed back to the hospital. This news shattered what had just been fixed. But the worst was the discovery of the three, round solid black sores on her heal. The guilt was overwhelming. Having to call home and tell my Dad was one of the hardest calls I ever had to make. Her doctor said he would do what he could, but she would not walk.
I didn't care; my heart was saying that I just wanted to get her well enough to be with "her Jackie baby". This surgery pretty much sucked her will to live out of her. The one bright spot was she and Dad celebrated their 59th wedding anniversary while she was still in the hospital. At this time, I had to hire a sitter 24/7 when I could not be there.
I found another rehab nursing home. Our expectations were different now, our goals had changed. She seemed to be slipping. Mothers Day, her granddaughters, Ryan and Megan, and I went and spent the day with her. By then we had a hard time getting her to eat. We brought ice cream, yogurt, anything soft and sweet. She was so childlike. The nurse took lots of pictures with all us.
Little did I know on the following Wednesday when I walked into that room, we had lost the battle. My husband had brought Dad down, not knowing what they were walking into. A friend of mine from work was also there.
Mom had suffered a stroke. Her body was shutting down. She was semi-conscious. My Dad went back home, not willing to accept what was happening. In a way, I wasn't either. I didn't go back to work.
I put on her favorite of old Broadway songs, lay down beside her and held her. I told her it was ok and that I would take care of Daddy for her. Those last few minutes, I took her face into my hands and made her look at me with those beautiful blue eyes and told her how much I loved her. And I think at that very moment, she did hear me.
Her last breath was long, slow and one of relief. I made a promise at that moment that I would pick up her fight with this disease. The lack of resources is shameful for a country with all that we have. Just getting my state legislature to follow through with accessing this state's future needs for dealing with Alzheimer's and the families was ridiculous.
Nursing homes don't want to ante up the money for better training (I did file a complaint against the nursing home where Mom fell and developed the bed sore).
My Dad continued to live with us after Mom's passing. He improved and walked without help. Every evening, he and I would watch Wheel of Fortune; he loved Vanna. He got the Sunday New York Times on Tuesday (that was ok). He didn't drive after he moved here. On Thursday evenings, we would go to Kiwanis. I wouldn't change a thing. How often do we get that chance to reconnect with our parents after we leave home?
In January of 2006, Dad started losing weight. I noticed he wasn't eating as much. So when his doctor became alarmed, he agreed to enter the hospital for some tests on Easter weekend. It turned into a week, and our news was devastating. He had advanced stomach cancer. With that, we came home and had hospice once a week. I promised him home is where he would be until the end. The doctor gave us six months; we got six weeks.
Losing them both within two years has been hard. My Mom's passing was May 13, 2004, but she was already gone. My story I know is not any different from any other child who is dealing with a parents Alzheimer's. Mom is gone, but I am still in this fight.
Dad's passing was on June 20, 2006, and I have now picked up this fight for him as well.
Thank you Alzheimer's Association for all that you have done and for continuing the push for a cure and help for those who won't have the financial means, as I had.
In memory of Geraldine Parker Brown (05/13/04) and "her Jackie baby", Jack R. Brown (06/20/06)
Always in my heart , never far from my mind.