We walk into the front lobby and we feel comforted by the giant birdcage, the pleasant arrangement of magazines that adorn the contemporary stone table between two warm and cozy chairs. We don’t notice that the magazines are old copies of Runner’s World. It’s been a very long time since any of the residents here needed to know how to prepare for the next big race.
The marketing director ushers us into her office, heels clicking. She assures us that my dad will be well cared for here. “The staff is warm and dedicated.” She doesn’t tell us they are overworked, underpaid, and for the most part, completely ignorant of the specialized needs of the aged.
Next comes the tour. There is a great big white board covered with activities. “We keep our residents stimulated. There are activities throughout the day. Some are here in the assisted living wing. Others are in longterm care.” We walk the halls. The silence in the corridors is deafening—no sign of life anywhere—certainly no sign of the activities that are plastered all over the bulletin board.
As we walk through the longterm care wing I find myself hoping my father doesn’t live long enough to enter these halls. It looks like a hospital. Curtains between beds provide the only privacy for the residents in longterm care. White spindly legs peek out from under the covers. It’s 3:00 in the afternoon but it may as well be midnight.
Back to the stuffy little office overlooking the “courtyard.” We spend almost two hours crafting my father’s care plan. How many showers would you like him to have each week? Three? No problem. We can’t guarantee the days you request, but we’ll do our best to fit him into the schedule.
What were his interests? Did he have any hobbies? Oh, he was a watercolor painter? We’ll be sure to make time each day for Sam to draw in his sketchpad. What are his favorite foods? Oh, he likes pork tenderloin? Spaghetti? Chicken? Great, we’ll make a note of that.
We leave the office feeling hopeful, clutching the care plan, a promise that dad will be nurtured in his new abode. The room is ready. It’s time to get him settled in. I imagine this is what it feels like to send your child off to his first day of school. Only this isn’t kindergarten. This isn’t a room full of frolicking children dancing around a loving teacher, cheery music playing in the background. This is a lonely little room with a tired armchair and a hospital-like bed with a mattress that is a foot too short for its frame. The heat is stifling. There is no thermostat in the room.
This is the first time my dad has spent a night alone in over sixty years. I think back to the one time my mother went away for a weekend to visit her cousin in Connecticut. My father slept with the light on the entire weekend. I plug in his nightlight, crack open a window and prepare my dad for his first night at the Peaks.
It has been seven months since we placed my dad in an assisted living facility. It has been a long and arduous process. Each visit brings new challenges and new frustrations. I am so grateful to the many people who actively participate in my father’s care, particularly the folks at the Homestead, an adult day care facility that my father attends two days per week and Family Hospice, the most competent, loving group of individuals one could hope to encounter.
Nothing could have prepared me for this process and I feel compelled to share with you, both a piece of my story, and a collection of tips to tuck away somewhere for the day you encounter a similar, heart-wrenching task.
This is a very short list of observations and suggestions. There are beautifully written, comprehensive books on this subject matter. Start with the two books I mention below, and use the comment section below to share with us any others that you have found helpful.
What You See Is NOT Necessarily What You Get
Undoubtedly, you will have some choices as you begin the process of finding the living situation that best meets the needs of your loved one. Hang out in each facility before you make your decision. Walk into the bowels of the building. Remember, lobbies are deceptive. Anyone can stage a lobby. Do the gathering rooms resemble the lobby? Are they cheery? Would you spend time in the “library”?
Find out if there is an activity director on staff—someone who is invested in keeping the residents actively engaged in meaningful, age-appropriate activities. See if the activities are, indeed, activities or just a collection of words on a chart or a schedule. Our brains need to be stimulated. Science has proven brain plasticity improves cognitive ability.
Movers & Shakers
I had the privilege of spending a day with my father in the day care facility he was attending before we moved him to the Peaks. It was a joy to see him actively engaged in in some sort of movement every single day. Find out if the facility offers a daily stretch or physical activity session. Then, show up and see if it actually takes place. If not, ask to have your loved one seen by a physical therapist.
The body needs daily movement for strength, flexibility, and mobility.
Would You Eat It?
Take a look at the food being served. Would you eat it? Are there fresh fruits and vegetables on the menu? Don’t fall for lines like, “Fresh fruit is hard to come by in the winter months.” If a grocery store can obtain fresh fruit, so can a facility for the aged.
If your loved one has dietary restrictions, be sure the kitchen staff is informed. I discovered the “care plan” doesn’t always make it to the kitchen.
When we communicated to the kitchen staff that some of the meat (?) was too difficult for my dad to chew, hence a ten pound weight loss over the course of seven months, the response we got was, “We offered to grind it.” Would you eat a ground pork chop? Be sure to check the menu daily and request an alternate meal when you know your loved one can’t eat it and cannot speak up for himself.
The Most Essential Element
If your loved one does not know enough to stay hydrated, get a doctor’s order to “push fluids” and then check to be sure the water isn’t just sitting in a cup on a nightstand. How long does it take to watch someone drink a four ounce cup of water?
Water is especially important for people who are constipated and don’t eat sufficient fresh fruits and vegetables.
And speaking of water, ask to see the shower schedule. Pop in at the designated shower time to see if it actually takes place. In just four days I could see a noticeable decline in my father’s appearance. We all deserve the dignity of a shower or a shave.
Aging Services
Get the name of the aging services Ombudsman and have a conversation with him/her. Stay in touch. If you do not live in the area, find an advocate to help you navigate the system.
It Takes a Village
Put together a care team. Gail Sheehy in her book, Passages in Caregiving writes: “Don’t be shy about asking for assistance from neighbors, coworkers, your church, your community college, or social organizations. Find students from your local high school or college who need to do public service. Surrounding your loved one with a circle of love is the best medicine of all. There is now scientific proof of this obvious human instinct.”
Recharge YOUR Batteries
Don’t forget to take care of yourself. We read a lot about self-care but we seldom take the time to craft our own nourishment menu. Make a list of things that nourish you. Make a commitment to partake of at least one thing on your list each week, preferably each day.
Explore Longterm Care Insurance
We have options today to plan for our own needs when we reach this point in our lives. I have learned so much from this process. Don’t assume the government has your best interest in mind. There is a huge discrepancy in institutions that are publicly funded and those that are private. Start planning now.
Do you have stories or suggestions to share? Leave a comment or share this post with a loved one.
30 thoughts on “Elder Care or Care(less)”
Heartrending experience, Sue Ann! I weep at the lack of care and consciousness for our parents, grandparents, our elders in one of the wealthiest countries in the world. My visits to my mother over her last years were to the home I grew up in Canada. My brother and his wife were caring for her. They were awesome. Yet had to work during the day, so she was left alone a lot. Thankfully, as challenged as the Canadian health care system is, she was able to have 3 nurses aids come morning, noon and night for approximately 30 minutes. They would have her use her walker and take her to the bathroom, clean her, shower, feed, leave her in front of the television, or in bed for nap. My brother would come home for lunch. They had a woman come in once a week to clean and keep her company and then another who would either read to her or take her for walks. When she did have to go into a facility when they went out of town, she always came home with bed sores. Ugh. She hated it. At the end of her life, her care became too much and she was put into the best of the facilities there are. Really energized people, beautiful environment. But she had to share a room a wretched hateful who said abusive things and complained about my mom. It was awful. My mother died 2 weeks later.
I soooo appreciate your guidance and wisdom here. It DOES take a village and looking for that support in many different ways and places as you suggest is one of the answers to an imperfect situation as you discovered your father is in. I know your love and care and tending to him is so exquisite. I know it weighs on your heart. And I know, that he knows, he is absolutely loved and cherished by you. And that is the most important thing there is for us as human beings.
Yes, these are turbulent waters, indeed. All I can do is take it one day at a time and do the next best thing with each new phase of his predicament. It’s tough to be so far away from him with only a phone to connect us. I have to trust that those phone calls warm his heart at a molecular level. Molecules of emotion, yes? Thank you, Kathleen for being a constant source of support and encouragement even in the midst of all you are unleashing into the world.
… “But she had to share a room with a wretched hateful woman….”
Ouch. . .
Sue Ann, thanks for sharing such a heartfelt and informative piece about your dad’s care. Our grandparents were all in assisted living before they passed away and my husband’s stepmother entered assisted living a few months ago. It is hard to watch and I have no words for it.
This list of tips is both important and horrifying. It’s incredulous that drinking water and bathing need to be called out. Given the nature of health care in this country, your advice at the end about long term care insurance is vital. There is a profound difference between publicly and privately funded LTC.
Thanks for sharing these tips and sharing some of your own experience. This was painful to read. I can only imagine how painful it was to experience, to write and to attend to daily from afar. Maybe you will bring the voice of Conscious Bites Nutrition to these spaces?
At a meta level, this is a complicated issue. The employees have little training, are barely earning a living wage, and are dealing with a wide rage of people with physical and emotional pain. On top of that, running these facilities as a business conflicts with the role of healing and attending to quality of life. It’s a mess.
I hope your dad gets the best possible care. I know he is lucky to have your attention and love and your exquisite ability to write with clarity. xoxo
Yes, Laurie, it’s a complex dance I find myself in. I have a lot to contribute, with all that I know about nutrition and nourishment. Unfortunately, my words fall on unresponsive ears for the most part. We are dealing with layers and layers of bureaucracy, steeped in misinformation and meager funding. One day at a time. . .
Sue Ann, Thank you for sharing your story. We went through a similar process with my grandfather a few years ago and it certainly isn’t an easy process. Your father is fortunate to have a daughter who cares so much about his happiness.
Yes, Shay, these are challenging times. But I was the lucky one. My dad was a remarkable father. He gave new meaning to the phrase unconditional love.
Dearest Sue Ann: I am grateful for the solutions you offer because that is what we need. When I absorbed the sentence “The staff is warm and dedicated.” She doesn’t tell us they are overworked, underpaid, and for the most part, completely ignorant of the specialized needs of the aged.” It echoed in my soul, because that is what its about at the core level. It saddens me that the biggest assets to our communities are the elders, the wisest, they’re the ultimate human capital. As their bodies fail them the system does too. I hope I can care for my mother, I am watching her age, and as she does, I am broken hearted. I feel such a tremendous amount of sadness. However, I do find a key to unlocking her immune system, the power lies at my daughters finger tips. I see how they interact and both of them just exist in such a joyful place. Maybe schools and elderly care homes should share a building or common ground? I too, love the idea of the “village” because this sense of community simply allows all other aspects to flourish. Thank you so much for this generous post.
Having taught young children for so many years, watching their light and their love, I smiled when I pictured your daughter interacting with your mom. Some facilities cultivate beautiful collaborations with schools, churches and community associations. The key is “activities director.” If the facility does not have an activities director, there will probably NOT be activities in place. “Appropriate” activities are also questionable . That’s where training comes in. Current events in one facility may be a newspaper thrown on the breakfast table (see photo, ugh) while a more trained staff would be holding a discussion and engaging the residents in a conversation to stimulate thought and elicit memories. Thank you for your heartfelt response to this post.
Beautiful post Sue Ann, thank you for sharing!
Hugs, Sabine
Thank you, Sabine, for stopping by and reading both my post and my heart.
your writing is so descriptive sue ann, thank you for sharing. it is so ironic, i am down visiting my dad and his wife in florida- and her mother just fell yesterday and needs to be put into a facility.. kicking and screaming unfortunately. I am definitely going to share this post with my stepmother.. thank you.
Good luck, Danielle—eyes wide open. . .
Sue Ann thank you for writing this. I can’t imagine having to putting my mother in a care facility. I think this is one of the hardest decisions to make. Both grandmothers were in nursing homes. My grandmother who lived to a 101 1/4 had her wedding ring stolen off her finger by a staff person! Thank you for writing a out your father.
It’s so difficult to see what goes on behind closed doors, Sherold. We have been blessed with the love and support of Family Hospice who have elevated the quality of my dad’s life considerably. It’s amazing how much our elderly thrive in competent loving hands, in spite of their physical/mental condition. . .
Sue Ann thank you as always for your beautifully written and eloquent posts. My husband and I have been struggling with care for his parents, 84 and 90, for several years. The home they are in they say is for “old people” who are “dying all the time” and it depresses them. We moved then out once, and now they want us to take them out again. It is challenging. But I do feel for them, the place is not very inspiring and apparently the food is declining in quality and my mother-in-law is losing weight. The options in this country for those who do not have huge amounts of money are rather dismal. Makes us all think about how we want to live our “golden years.”
Oh Laura, my heart aches for your inlaws. My dad’s case is very sad indeed, but he no longer feels joy or despair, a blessing really. I can’t imagine what it would be like to have to place one’s parents in a facility and have them ask to to be moved—twice. Sending you light and love and strength. We need options. . .
I’m really proud of my mum – she works at three different aged care facilities and I know she adds a spark to their days, esp the old guys – they love her!
It’s ironic, Denise. My very first job was in a retirement home, Beechwood in Buffalo, New York. I cared for those residents as though they were family. I knew their dietary needs and preferences. I knew their families. I knew their stories. In my innocence, I presumed ALL nursing homes were like Beechwood. Now, almost forty years later, I’m discovering the reality of public vs. private care and I am heartbroken at the disregard we show our elderly in these facilities. I am so glad to hear that your mom is adding a spark to the lives of so many. I see where you get your light. 😉
Sue Ann:
I commend your grace during what must be a difficult time. And while others wouldn’t do the detective work you’ve done, you’ve gone ahead to ensure your father is in the best care possible. How sad the way so many of these homes aren’t the best places to spend one’s last years…but you’ve made sure your father will live with the dignity he deservers, all while taking care of yourself. You are grace personified!
I wish I could take credit for seeing that my father lives with dignity and grace in these trying times but I feel woefully inadequate in this new set of circumstances. One day at a time, yes? Thank you for your vote of confidence, Tracy.
Hi Sue Ann,
Thanks for writing this. I have recently gone through a time supporting my mom through some mental health hospitalizations. Tough stuff. It’s been challenging to deal with the doctors and the insanity of the healthcare system as it is. I have had to surrender and allow my own feelings of helplessness to be there so I could find my way through.
The one thing I know for sure is that I am capable of loving and accepting my mom and seeing who she really is… and this is so important for her at this time. May we all have people who can do this for us as we age.
Wishing you and your Dad the grace of treasured moments.
Thank you, Suzanne. I am so sorry to hear about your mom and I wish you light and love and strength as you navigate the system. It is not easy. The biggest gift for me, in all of this craziness, has been acceptance. I have fallen in love with the dear sweet little man that is now my father, just a wispy little shadow of the man he was, but no less endearing. Thank you for sharing a piece of your story.
Sue Ann,
Rarely am I at a loss for words, but with an aging mother, who until two months ago lived next door, and I, her single eldest daughter, well this really strikes a chord in me. I am concerned about the day when this may be our reality, and there is no long term care plan.
Your list of things to consider is mindful and reasoned; your compassion vibrates off the page (or computer screen, as it is). I thank you for this, I will share this, print this out, and start to make plans *just in case*
xo
Yes, Shanna. It is never too early to begin this process. I wish I had known then, what I know now. . . Best of luck to you and may your mother stay young at heart and vibrant in health for a very long time.
Sue Ann, as a daughter who lives far away, too, I can empathize with you — while holding my breath. (My parents are 83 and 76 and still living at home.) It’s difficult “watching” (or finding out after the fact) what’s really going on. My Dad had a brief stay in a care facility recently that still leaves me shuddering… I applaud you for not being deceived by appearances and for taking a proactive stance!
Kimby, it is so important for us to keep our eyes wide open, yes? Thank you for your empathy and your support.
Sue Ann,
Thanks for sharing your story. I can’t even imagine the pain and anguish you’re going through. I had a great-grandmother in elder care and always dreaded going to visit her because of the energy and smells. You brought home to me what my grandmother, her primary caretaker, must have been going through even though it was never communicated.
Again, thank you for allowing us in on your own journey.
Marion
It’s a complex situation, indeed. Watching this process and engaging with my dad’s caretakers (the good, the bad, and the ugly) has been a very eye-opening experience. At the very least, it has opened my eyes to the many holes in our system and the need to have our own “care plan” in place and in writing. Sometimes we need to be our own advocate, yes?