Last August when I went to Upstate New York to see my mother, I believed it would be the last time she would recognize me. I hadn't seen her since February of 2010, when the man I had known as "Dad" my entire life passed. Mom's disease had noticeably progressed in the two and a half years since I had seen her.
While I had been phoning several times a week, being present to witness the progression of Alzheimer's is painful. She had her husband of almost two decades, Pete, to tend to her. They lived alone and had a very active life. I secretly questioned where he found the patience to handle the repetitiveness, coupled with what appeared to be permanent exhaustion, as she required extensive napping. That was none of my business as I respected their union and privacy.
He was a good man, highly capable and I was grateful he was such a good husband to my mother. He still found time to golf and be with his friends, dropping her for a few hours at an Adult Care Center. I hadn't planned on visiting my hometown again. I had put my dysfunctional past behind me, and had written a book, "Ellen Who? Story of a Secret Love Child," about it to help others who had experienced a similarly bizarre history. I had no desire or plans to ever return to my hometown. Those chapters of my life were behind me, or so I thought.
I had sent Pete a plant for his birthday, which was just after Thanksgiving, and found it odd I hadn't heard from him by the end of the day. When I called their home, his sister Kathy, who lived in Michigan, answered. Pete had fallen that morning and broken his hip. She had jumped in her car immediately to make the seven-hour trip to assist. Pete's daughter lived one hour east, and both my brother and sister lived right there in town. Apparently, no one was stepping up. I spoke to my mother, who sounded rattled and confused. I hung up and booked my flight.
I arrived a few days later, relieving Kathy to return home. I was stunned at what I saw in my mother.
She was confused and unable to cope with direction coming from me. I reached out to an Alzheimer's hotline that informed me it was common for the rapid progression of the disease when there was a big change, especially if the primary caregiver is no longer present. She was incapable of completing any task on her own. The following morning, eating breakfast, taking her medications, getting dressed and showered required continual direction and guidance.
Mid-course she would need to be reminded repeatedly. If I left her for five minutes in her room, she would put her pajamas back on and get into bed. It took two hours to get her up and out of the house. I had raised two children alone since they were toddlers, and that was a walk in the park compared to this. Pete was due to move from the hospital that performed his hip surgery to the rehabilitation center nearby, and I wanted to get her to see him daily. She seemed to be better after seeing him, and resisted when it was time to leave him. He instructed her to follow my directions, which helped in the moment. I took her out to dinner and that proved to be a disaster. She had lost her filter and prudence when it came to strangers. It was challenging to get her out of the restaurant afterwards. We were barely back at their place when she began the stream of questioning, "Where's Pete?"
I was not prepared for what was referred to as Sundowner's Syndrome, which brought out anger and aggression. My mother began to yell at me, accusing me of trying to separate her from her husband. She'd refuse any direction, and scream at me exactly the way she had while I was growing up. I was beside myself.
Once I got her to bed for the night, I was able to reach my friend Dorothy in Los Angeles, from my support group. Dorothy had seen and heard everything over her lifetime. She immediately got me on track and after praying that night, the morning brought what must have been a miracle. I was racing against time to get myself ready for the day, the same way I did when my children were little so that I'd be ready to be the caregiver.
Her face was all bright-eyed as she exclaimed, "I am so happy you decided to pay a visit!" Her demeanor was loving and kind. From that moment on, I saw this woman before me as a vulnerable person who needed me. The same way I needed her as a child. She needed reassurance, love and consistency during this time while her world was being turned upside down. I could do this, and I would. I would love her in the way she was incapable of loving me all those years back. I saw an innocence in her eyes that was void of the lies that our relationship was based upon. I'd love her unconditionally, and be the daughter she deserved, and I could only hope my own would become if I was ever in need.
The visit turned into a month. We visited Pete daily, and decorated their place for the holidays in preparation for his return home. Physical therapy came in, as did his friends. They spent time with Mom as I researched assisted living homes. I worked with Pete to make the right decision, and moved them seamlessly into their new place within a matter of days. I made sure to have the new living room painted the same color yellow as the one they were leaving. It reminded me of transporting the baby crib bumpers and hanging mobiles to our summer home as to not miss a beat with familiarity for my two when they were babies. It worked, and Mom adjusted instantly to their new home.
Pete was embarrassed he hadn't taken this step sooner. He was a strong, proud, independent man, and I was honored he entrusted me to manage everything for him. Both of my children flew in without hesitation for Christmas, and saw the deep love that had grown between mother and me. I smiled when I entered the new apartment where I had carefully hung every picture exactly where it had been in the prior residence, along with organizing all their belongings. I visited daily as they adjusted, just to hear my mother say, "What do you think of our new place, isn't it lovely? ", as if I was there for the first time. Every day was a rerun in Mom's world, and she was free of worry or concern.
I returned to California filled with what I wasn't aware was missing. A deeper healing had taken place within me through this opportunity to be of service to my mother and Pete that gave me great relief and comfort. After feeling as though my favorite holiday had passed me by, forgiveness was the gift that ultimately came to me this past Christmas.
Talking with other people who face the same daily challenges can help caregivers manage stress. Specific types of support groups can vary on a community-by-community basis; check out this Caregiver.com <a href="http://www.caregiver.com/regionalresources/index.htm">guide</a> to find the right program for you.
Caregivers have their hands full and may not have the time to meet with an in-person support group. In that case, <a href="http://www.aarp.org/online-community/groups/index.action?slGroupKey=Group92">an online support group</a> can be a great alternative. <a href="https://www.manystrong.com/?utm_source=aarp&utm_medium=link&utm_campaign=caregiving">
Support groups not your thing? You can see what other people are saying about caregiving by just checking out a <a href="http://www.aarp.org/online-community/forums.action/relationships_caregiving_anyone-talk-their-parents">simple message board, such as this one sponsored by AARP.</a>.
You may need to attend an event or simply seek a few hours for some much-needed rest. Eldercare.net offers a <a href="http://archrespite.org/search-for-respite">Search For Respite Tool</a> or <a href="http://www.eldercare.gov/Eldercare.NET/Public/Index.aspx">Eldercare Locator</a> where you can find professional help. Also check out this <a href="http://www.caring.com/articles/more-ways-to-arrange-breaks-from-caregiving">guide</a> from caring.com for more respite-care ideas.
Does your loved one need transportation to go buy food or go shopping? There are numerous van and shuttle services specifically for seniors. Contact your local <a href="http://www.services4aging.org/index.asp">Area Agency On Aging</a> for one near you.
Don't have time to shop and cook? Consider a <a href="http://www.beetnikfoods.com/?gclid=CNm7hsXX27MCFQ-e4Aod3G8Axw">service</a> that will deliver gourmet meals to your home, no matter where you live. For low-income seniors in need, AssistGuide Information Services offers a <a href="http://www.agis.com/Eldercare-Basics/Support-Services/Food-and-Meal-Services/default.aspx#3">directory of food services available.
During the 2009 economic downturn, 1 in 5 family caregivers said their finances were so strained that they were forced to move into the same home with their aging loved ones to reduce expenses, <a href="http://www.caregiving.org/data/EVC_Caregivers_Economy_Report%20FINAL_4-28-09.pdf">according to a survey by caregiving.org</a>. Some 47 percent of working caregivers indicate that an increase in caregiving expenses caused them to use up all or most of their savings. The <a href="https://www.manystrong.com/">Many Strong Support Network</a> has a fundraising tool which allows other people to anonymously donate funds to people who are under financial strain.
If ever you have a question about resources, or need support at a moment's notice, AARP's caregiving support line is available at 1-877-333-5885, Monday through Friday, 9 a.m. to 5 p.m. Senior care advisors for <a href="http://www.care.com/senior-care-planning">Care.com</a>, also provide free counseling for caregivers, and help them map out the best course of care for their loved ones.
Organized caregiver co-ops can provide an affordable way to coordinate care for your loved ones. Check with local community centers or this <a href="http://www.caring.com/local/adult-day-care">Adult Day Care Directory</a> to see if someone in your area has already started one.
Care.com's <a href="http://www.care.com/senior-care-directory-find-p1071.html">Senior Care Directory</a> can set you up with a housekeeper, errand runner, pet sitter, or whatever you need to make the caregiving experience a little more manageable.
According to author of <a href="http://www.amazon.com/Medical-Day-Planner-Guide-Navigate/dp/1936608774">"The Medical Day Planner"</a>, Tory Zellick, hospital social workers are a great resource for all caregivers. "[Hospital social workers] are always armed with information for your community," said Zellick.
Websites like <a href="http://www.lotsahelpinghands.com/">Lotsahelpinghands</a> have caregiving communities that connect volunteers with caregivers in need of support or help.
Family gatherings offer a great opportunity to discuss the future of loved one you care for, says Dr. Bruce Chernof, president and CEO of The SCAN Foundation. The group offers a guide -- "<a href="http://www.thescanfoundation.org/sites/thescanfoundation.org/files/TSF_Ten_Conversations_English.pdf">10 Conversations To Plan For Aging With Dignity And Independence</a>" -- to lay the groundwork for these critical discussions.
Follow E. O'Neill on Twitter: www.twitter.com/A_Love_Child