Sooner or later, we’re all likely to face the decision of how to care for an elderly family member. In my life, that took the form of my mother-in-law choosing to move into a retirement home, and later, my mom living with my family for nearly two years. My “MIL” had adamantly proclaimed for years that she “never wanted to be in a nursing home,” but she was very social. She went in for rehab after a hospitalization and decided it was too much fun to leave. My husband and our children (as well as our foster children) visited her almost daily. And I was right by her side when she died several years later, praying a Divine Mercy chaplet and whispering words of love and encouragement in her ear. She died within seconds of me telling her how very much I loved her.
For my own mother, in-home care ended just before our second daughter’s wedding. We needed housing for several out-of town guests, and our house is small. I wanted to put Mom in a local respite care facility for two weeks. My sister decided it was time to move my mom to a nursing home closer to her former “stomping grounds.” I had no say in the matter, so I sadly broke the news to Mom, packed up her belongings all by myself, then made the four-hour drive north.
Before my mom moved in with us, she and I had not been close. She was very angry when I converted to the Catholic faith and hounded me with unkind letters and accusations for years. It took me a while to forgive her. As time went by, she finally realized what a good person I was becoming and saw the beauty of my marriage and children. The kids and I often visited her, and later, siblings and I worked out a tag-team driving plan to get her to my house twice a year for a two-week visit. After she moved in with us, the first time I gave her a bath and was washing her feet, a picture of Jesus washing the feet of His disciples entered my mind, and tears came to my eyes. This was love, I knew, and the pain of the past melted away in that moment. My mom didn’t suddenly change; she still occasionally employed her “guilt trip” tactics on me. But they no longer had an effect. My love for her grew, and I know that my mom appreciated my care and attention. When I told her about moving “back home,” she was quite upset about it, so it was a painful transition for both of us.
I visited Mom once a month, so I noticed a decline in her mental faculties almost right away. Sometimes only two weeks would go by in between our visits, but she often could not recall prior visits. I would take her for rides, drive her past her old house and past the church she had attended, and take her out for ice cream, but she could not recall any of those adventures. She was also withdrawing, spending too much time in her room. Facility staff would go to get her, and she would make excuses to stay in her room. Witnessing her physical and mental downswing was stressful and aggravating. My mother passed away just eight months after leaving my care.
When that cognitive decline rears its ugly head, caregiving concerns take on greater significance. And when a loved one loses the ability to speak, leaving them in a care facility gets scarier. As a professional caregiver, I have occasionally helped with 24/7 care of folks in a facility when patients were waiting for a room with a higher level of nursing care. Many of the retirement homes are struggling with the industry-wide problem of understaffing, and the attitudes of much of the staff are not based on Catholic teaching. It’s just a paycheck to them. I found myself very aggravated with the lack of attention and true compassion that my clients and their families received. There are still good, conscientious caregivers to be found, but not enough of them to go around.
I find it interesting that a syndrome, known as “sundowners,” is a common symptom of Alzheimer’s patients. These beautiful souls are now in the “sundown” of their lives, drawing closer to death. They’re entirely dependent upon family or others chosen to care for them. The luckiest will have families who are able to keep them in their own home for as long as possible, friends who still stop by or deliver a meal, and Eucharistic ministers who come into their homes. However, not all are so blessed.
Many are lonely, which makes them crabby in their loneliness. Caregivers must not take angry outbursts personally. Men are especially bothered by their decline and dependence on others.
One of my many male clients, who has passed on, tried to frazzle me on my first visit to his house. I’ll call him “Joe.” When I walked in, he yelled, “Who the hell are you, and who told you to come here?” I actually started laughing and said, “It’s nice to meet you, too, Joe.” I told him I’d be in the kitchen, cleaning up, and he could come get me if he needed me. Within 15 minutes he was in the kitchen, complaining about his regular caregiver not being there to help him sort his massive stamp collection. I said, “I had a stamp collection when I was a kid!” so he grudgingly invited me into his office. I picked up on his system pretty quickly, and soon he was happy to see me as I filled in more often.
Several times he complained about something he needed for his collecting process that his family wouldn’t get him, and I often told him, “Joe, with your chronic crustiness, I kinda feel bad for your kids!” He would just smile. But you know what? I loved this guy, because under all that crustiness was a lonely widower and a faithful Catholic just wanting affirming attention. When Joe’s friends stopped by, I was able to get them all laughing with my fun sense of humor, and a laugh from that client was worth more to me than any paycheck could ever be. I had broken through the “ice” with my love.
I surprised this client one day with the very thing he needed for his stamp collection and gave it to him one Saturday in mid-June, saying, “Happy Father’s Day!” He was tickled pink. That sealed my fate with Joe. We were the best of friends after that small gift, given with great love.
Caring with love
Full-time caregiving for family members is an exhausting, costly endeavor, especially in a situation with advanced dementia. If a spouse or grown children are able to provide care at home, the proper equipment must be found. If the decline is slow and long term, trained and paid caregivers must be found to help out. For the family members, there are many sleepless nights, as neurological “misfires” often crop up after sundown. I’ve witnessed firsthand the stress and exhaustion of family members. Some say that the nights are the worst because, even with bed rails in place, loved ones can sometimes manage to get out of bed. Then comes the stress of an EMT squad and unknown people bustling in to assist with getting the patient back into bed. A caregiver spouse once confided in me that he would often be jolted awake from a bad dream, thinking that his loved one had fallen out of bed again.
I need to mention here what a tremendous resource hospice providers can be. Before beginning a service, research your choices to make sure the staff will respect the life of your loved one and never hasten death. HALO (halovoice.org) offers excellent guidance on selecting care for your loved one. One of my clients uses a hospice that provides, at no cost to the family, EVERYTHING that her husband needs to care for his wife at home. Nurses come weekly to check on her, wash her hair, keep her nails trimmed, deliver prescriptions to the house, and drop off incontinence products. It’s a Godsend! Family should also know that it’s okay to ask friends to help. Many of them want to but just don’t know how!
If the exhaustion and stress (along with the decline of a loved one) come to a point where a move to a facility is considered, the weight of the decision hangs over the entire family. Is this the right choice? Will my spouse/mom/dad get good care, gentleness, and love from the nursing home staff? Will they continue to eat well and be mentally stimulated with conversation, music, a change of scenery throughout the day?
If you must go that route, you’ll want to visit often, ask questions, notice changes in your loved one’s behavior, and continue to be their protector and advocate.
And, more than anything else, pray and trust the inspirations of the Holy Spirit. When God blesses you with the gift of being a caregiver, He will also give you the grace and support to see it through.