On a Saturday morning in September, my 86-year-old dad reported he’d been bitten on the forehead by an insect. It swelled up, he said. Strange, I thought. My husband and I drove out to the farm to inspect. He hadn’t been bitten. He’d fallen.
We took him straight to the hospital, where they admitted him for tests. While there, he ran into some complications, but they stabilized him and helped me arrange for Dad to stay in a rehab facility. Weeks later, rehab prepared him to return home where he would attempt to take care of himself.
He tried, but it was too much. Even with frequent visits from home health care nurses and therapists, he panicked one night and phoned 911. The ER doctor called me at 2:00 a.m. and said nothing was physically wrong with Dad; the doctor said Dad kept repeating one line: “I can’t take care of myself!” My brother was out of town, so my husband and I drove to the emergency room an hour away and arranged a return to rehab while we tried to form a plan.
We thought assisted living might work, so I toured a nearby facility. The director took me on a tour, dropping her voice to a whisper as we tiptoed past the bingo players in the dining hall. She pointed to the drink station. “Available 24/7,” she whispered.
Dad would like that, I thought. I could imagine him coming down for an afternoon cup of coffee and staying to chat with another resident. I snapped photos of the coffee station, sent them to my brother along with pictures of the library, lounge and room. He agreed it all looked good. We decided to add Dad’s name to the wait list.
But within days, Dad continued his descent—not another tumble to the ground, but a fall nonetheless. He keeps falling deeper and deeper into an emotional and mental abyss—a prison of his own fears. He imagines anatomical impossibilities to explain his symptoms and clings to bizarre self-diagnoses. Reason can no longer reach him, though maybe it never did.
Assisted living is no longer an option. In November, one facility transferred him to another designed to handle complications like his. From there, he landed back in a hospital. Finally, we’ve got him situated in a place where trained medical staff can answer his call day or night and tend to his needs, whether actual or perceived.
I accompany him to doctor visits, explaining symptoms he can’t remember and taking notes on the doctor’s diagnosis and treatment plan to refer to later. He often mishears, misquotes, misconstrues, or misunderstands what they say, and even my careful notes cannot convince him otherwise.
He phones and begs me to bring him something, so I show up with his request. Soap and shampoo. A belt. Q-tips. Note pads and pens. Batteries for a hearing aid he doesn’t wear. One time I showed up with floss and spent an hour assuring him they weren’t throwing away his clothes. I helped organize the five rolls of plastic trash bags he’d demanded from one of the aides. At his orders, I straightened his newspapers and magazines into tidy stacks, fetched the TV remotes, and adjusted the front legs of his walker a notch or two.
No matter how long I’m there, I can’t show up often enough or stay long enough to suit him. The nurses and aides can’t come quick enough when he punches the call light. He wants someone constantly by his side.
I try to talk him to a quieter, calmer space, inviting stories of his grandfather, aunts and uncles. He occasionally drifts into memories, and I listen; usually, though, he fixates on something that worries him—most often it’s his catheter, but it could be a bit of flaky skin, a tiny spot on his arm, the ideal position of his hospital-style bed. When he’s in that mode, nothing can distract or relax him. Eventually I have to leave to pick up my son from school or meet a client or eat. When I begin to excuse myself after spending an afternoon with him, he says I’m too damn busy.
Today he phoned. He phones often. Today he wants more socks, special ones for his varicose veins. He demanded them, he begged for them, he made sounds like he was crying. I said I’d try to bring them over in the afternoon. He abruptly stopped the unnatural crying and said he’d be dead before I got there. Then he hung up.
I’ll sort through the tub full of clothes we brought back from his house. I’ll dig through and find what he wants. I’ll leave behind the bills, the baskets of laundry, the editing projects, the cluttered bathroom counters and the splattered kitchen floor, and this afternoon, I’ll take Dad his socks.
* * * * *
Note to readers: Thank you for your patience. I know that some of you have wondered why I’ve fallen silent for such long stretches in this online space. This is why.
Oh, Annie. I am so, so sorry! This is the ugly part, and yet . . . it is also the early part, I hate to tell you. Gladly, my mom evened out to a loveliness that makes me gasp in awe at times. My MIL, on the other hand, got more and more taciturn and even combative. This from a mild-mannered, gentle soul! There is no predicting. NONE. It’s a road without any possibility of a map, although i’m finding a couple of novels immensely helpful. One is called, “Elizabeth Is Missing,” by a Brit about a mother/daughter. And the other is “Still Alice,” about an early onset 50 year old Harvard prof. Also, this website can be helpful: http://www.alzheimersreadingroom.com I have yet to explore the options mentioned in the acknowledgements for that second novel, but will begin to do so soon. Man, this is hard.
It must be terrifying to feel the memory slipping away and have no control. I wish he weren’t expressing his fears with such anger–though this is consistent with how he has always responded to stress. I know there’s no predicting, but it’s a continuation of the same.
Thank you for the book recommendations! I’m copying the titles now, even though a part of me doesn’t really want to read them (and heaven knows I don’t have much extra time!).
Bless you,
Ann
I haven’t read it, but you might also want to check out “The Geography of Memory: A Pilgrimage Through Alzheimer’s” by Jeanne Murray Walker. And if any of these are audiobooks, maybe you could “read” while driving.
Thanks for the recommendation, Laura. I remember when The High Calling highlighted Jeanne’s book. That was before I knew what we were heading into. Though my dad doesn’t have Alzheimer’s, some of the issues are similar.
Oh Ann. You’ve been on my heart and in my prayers. Such difficult days. I understand. My Dad is beginning to slip away into the same mental abyss, but he does have my Mom there with him which lessens some of the burden on us (but makes it very difficult for her). We’re seeing early signs in her too. I’m so sad that their last days are so very hard.
Please know I’m praying – for strength and grace and wisdom. Praying, too, that He will protect your heart and spirit. It isn’t easy hearing those words no matter the reason.
I love you dear friend. Wish I could reach through this screen and give you a huge hug.
Linda, thank you for reading and responding–and praying, most of all. Yes, you know what it’s like. I’ll take all of that: the strength, the grace, the wisdom, the protection. Thank you. It’s been intense.
You’ve been on my mind a lot recently, but I’ve been going through a dark tunnel of sorts (medically and otherwise) so I have been quiet. Nevertheless, I wanted to let you know that you are loved, appreciated and prayed for.
Holding you up in prayer from the sunny isle… May the Creator God continue to uphold and strengthen you and yours as you traverse this stage of the journey. God is faithful.
Ruth, I’m so sorry to hear of your own deep, dark places of struggle that have led you to a quiet place, whether by lack of time or feeling the need to stay silent on the matter(s). Thank you for reading this and in the midst of your own struggle expressing such warm support and affection. You are loved, too, and May our Father uphold and strengthen you and yours, as well. I would love to sit across the table from you someday, Ruth, and hear more of your heart.
I can’t imagine how all-consuming this must be, Ann. I think of you often and keep you in prayer. I pray things will even out, as Diana says. Love you.
Laura, thank you for being here and loving me well. And praying.
Ann, thank you for sharing. Not sugar-coating or explaining, but just giving us, your readers, a glimpse. I’ll be praying for you and your family. <3
Thank you, Michelle. Yes, that’s it. A glimpse. The details are disturbing and grim. Thank you for your prayers and for noting my decision to just get the main thing out there. As Diana observed in an earlier comment, this is only the beginning. If this is going to be my life for the next X years, I probably would benefit from sharing the basics of this reality.
This is so familiar… sounds dementia like, and fear of aging. My dad used to call my sister for everything and any thing. Drop her daily plans to take care of dad. We finally decided he feared being alone, if he had a need he knew she would be there, he didn’t want to be alone and in perhaps medical need. It is hard for the care taker. I will pray for you. Just know this is not just an isolated incident many who travel the road of caring for elderly see this kind of strange behavior. Be his advocate. Be positive as much as possible and always let him know you are here for him. It is exhausting but if he was age 3 you would have more compassion. So think of him as a scared little ‘child’ who doesn’t know what is happening to him. We do our best to reassure and calm. when we know the fears. are deep within. I am sorry you have to deal with this.
I sure do appreciate all your insight, Sharon. Your comparison to a toddler is thoughtful and accurate–one that I’d made myself several times and it does help to think that way.
Thank you. Thank you for your prayers.
You remain in my thoughts and prayers. God is giving you uncommon grace to AGAPE your father. Christ in you? Shining so brightly!
Sending love your way tonight.
Thank you, Cheryl!
Oh, Ann. I wish I could give you a real hug today. It’s hard. So hard. I know. I love you.
I can feel that hug across the miles, through the screen. Thank you.
This is an incredibly tough situation, Ann, for you and for your family. I will be praying for you daily – for strength, peace and comfort. Sending you love, friend.
Thank you, Michelle. Thank you for such a hug commitment. Wow. I feel like I need those daily prayers as something seems to come up every single day–some new wrinkle or surprise or event.
Ann,
My heart is breaking for you. Though many of your friends have been on similar journeys, it cannot lesson the intensity of your own. We too have walked those halls, received the pain of accusations, spent all the energy we had and more. I won’t go into our details, but just want you to know I am praying for you. No, it will never feel like enough even though you give more than you even think possible. May you have moments that surprise you, peace that prevails beyond reason, and strength that is other worldly. These are exhausting days and weeks. May God carry you. I’m sure you have sweet friends around you, but if you just need to unload I am here.
Dana, wow. Thanks for your understanding, your words of wisdom.
Oh Ann! I’m so sorry. We just moved my mom and dad into a facility the week before Christmas. I totally see their fear and anger as well. Fortunately, their anger hasn’t been directed at me (so far). But it has been all-consuming. Grocery shopping, trips to pharmacies and docs…you no sooner drop something off and they ask you to go back to store again…all with a 3-year-old underfoot. It has been very overwhelming and daunting. I’ll think of you and pray for you every time I go over to my mom and dad’s…which is often!
I saw your photos, Susan, and was thinking of you in the midst of our chaos. I appreciate knowing your situation and hope that they find a way to settle into their space.
Ann, I have been there. Both my parents went through this at the same time and finally passed away 7 weeks apart. It is the hardest thing you will ever have to do. You may have to suspend some parts of your life while this goes on. I was an only child with 5 little kids still at home. It’s all about priorities. I will hold you in the light and send loving prayers to you as you go through this journey that no one prepares you for. Blessings, dear, look for the blessings
Daina, thanks for taking a moment to read this and share your own story. I sure appreciate your perspective, your insight. I’ll keep my eyes open for the blessings. Thank you!
We walk this walk with Rich’s mom right now, though his dad is there and showing signs of saintliness far beyond anything we expected. Grab the snippets of joy whenever you spot them (that was the focus of my novel, centered on a family dealing with dementia) and know that many, many of us are praying for you and your dad.
Every.day.
Thank you so very much. It helps to know I’m not alone. Bless you.
It’s difficult to sort out reality from manufactured maladies isn’t it? And the manipulation. I’ve seen it. Do you give into so you don’t feel guilty or do you stand above it all. So many questions and none of them have easy answers. So friend, I offer a prayer for wisdom — and patience.
David, yes, it is so very complicated, just as you say. Thanks for the prayers. Those sound good. I’ll take any and all wisdom and patience!
Ann, I had every intention to vox you today, as you were so heavy on my heart.but the afternoon slipped through my hands and I didn’t. 🙁 I am praying for you this evening, and for your Dad. May you know God’s mercy and grace in the fullest of ways this season. You are not alone–God is present. Love you, my friend.
Thank you, sweet Kris.
Billy Graham addresses these exact situations in his book, ‘Nearing Home.’ The human reaction to aging varies, but common themes include what he calls “hidden perils.” These include fear, anxiety, loneliness, anger, and feelings of abandonment. These all have the paradoxically paralyzing effect of turning the elder inward into an intensely selfish absorption that s/he then acts out on in terrifying ways. The aging brain and body are no longer resilient enough to fight the battle on all these fronts, and sometimes the lack of oxygen, the buildup of toxins from less-than-fully-functioning kidneys make people act in ways that are hurtful. So, our bodies crumble and we lose our once-robust hold on life. We are no longer strong. But Christ is. May you and your loved one continue to find a renewed hope in God, a peace that the loss of control need not be mourned, and the ability to yield it all to Jesus by placing tomorrow in his hands.
Your information–or, should I say, Billy’s–is helpful. I’ll say quietly here in this comment that the behavior we’re seeing from my dad seems like an exaggeration of how he’s always been. But he does seem to be crumbling and miserable and it is hard to see anyone feel like that each day, even someone who has been a difficult person.
Nothing but sighs and groans, dear Ann. Trusting the Holy Spirit to translate them into prayer.
Grace and peace to you–and to your dear father.
Thanks, Nancy, for sighing with me.
Ann,
Your heart expressed for the care for your dad is beautiful.
I just wanted to tell you something that I think you already know, not one service of love, act of gentleness, or display of compassion is wasted. I believe it reflects the heartbeat of our Father’s love for us.
You are a good daughter.
Your kind words mean so much. Thank you.
Have you read Rebecca Solnit’s The Faraway Nearby? It’s a gorgeous, poetic rumination on the gradual loss of a parent.
I will pray for you– this sounds so hard.
Denise, I have not. Thanks for the tip.
And…it’s harder than I can say.
Ann – I’ll be praying for your entire family. I’m so sorry.
Blessings.
Thank you. I know you’ve had a lot to bear, as well.
Ann, thank you for sharing your struggle. I will be praying for you and your dad, can’t imagine how hard it must be! I wanted to say I would imagine you have friends up there telling you, but just in case not, essential oils might help calm his behavior and even mood at this juncture. Feel free to contact me or call me if you want to discuss further. Silence is never wasted – God is working all kinds of good through your trials.
Sure appreciate your note, Kathleen. Bless you!
No great words of wisdom, only knowing prayers. I understand the unrelenting fear. My dad had a health bout followed by a stroke 2 years ago which landed him in a rehab facility for two extended stays. I understand the phone calls, the panic, the child-like responses. He truly was trapped in a prison until the day Jesus ushered him home. May God shower your father and you with his tender mercies in these times.
Julie, thanks for taking time to write and share a glimpse of your own story. I’m touched by how many people have had to face this.
Oh Ann, my heart weeps for you. Sigh… I don’t know what to say, but I will pray. I pray that you would know how to “lean on the everlasting arms.” His arm is not too short. He can reach here, even here.
Thank you for writing the way you do, and for not sugar-coating it; not waiting till it’s resolved and tied up with a bow. This road is hard. This is suffering. But it’s not The End.
Love you friend.
Julie, it means so much that you’re here in this space, reading, seeing, understanding. I don’t think this will end with a happy resolution tied with a bow, so I might as well share a window into it. I hope it helps others.
Hi Ann,
I’m sending a hug of knowing for this hard road. My heart and prayers go out for you and your Dad. This disease has a mind of it’s own as it steals your Dad’s … we do not understand its actions or its voice. And oh, that disease has a voice… remember it is the disease talking. Cherish the moments you may find to be normal, they are few and far between… but they come. I remember the last root beer float I had with my “clear” Dad and it is one of the sweetest memories I hold on to. I will pray for those clear moments… that they come often enough to relieve the stress and give you the time to say what you need to say… but that God would strengthen you continually along this journey. The very hardest part for me was having to grieve the loss of my Dad and any hope I had for “what could have been” or “what would never be” before his physical body was actually gone. It is hard work. Be kind to yourself…no one gets this right. It may help your family to adopt the “grace and space” idea that you may need grace and space to re-fuel while in this battle. Lord have mercy… and be near to your dear Ann.
Pat, you sure know this personally and also professionally, right? Thanks for this thoughtful reply. So many people dealing with similar issues. I appreciate your insight.
Very dear Ann, you are in my thoughts and prayers as you traverse this difficult path. Do not forget to take good care of yourself, even as you do your utmost for your dad. Hugs, Alison
Alison, how kind of you to remind me of a little self-care. Some of those early weeks, I didn’t know how to do it all. Things have settled down a little bit and I’ve grown wiser. Hugs back!
Thank you, Ann, for posting this. I will pray for you and your dad.
My dad too has been going downhill mentally. He has a brain tumor and there’s some dementia going on there with that. But, in contrast to your dad, mine thinks he is perfectly fine, perfectly capable as when he was 50, and needs so assistance at all. He refuses assisted living. And there is no family/caregiver but me and my husband.
A couple weeks ago, dad caught his condo on fire while cooking something around 11 PM. He survived fine, thankfully. And the walls and roof are still standing but the entire contents – the cabinets, the counters, the appliances, every lamp, sofa, TV, etc. is so smoke damaged it’s all toast. I have 5 weeks to work with the insurance company to gut the place and completely remodel it and repurchase all new stuff for inside. Like you, things in my life and work are falling through the cracks all the time and I juggle it all.
Like your dad, mine seems to want lots more attention and lots more of my time – even before the fire – than he ever did. It’s hard to juggle it all, while also processing the changes and the loss of “your dad” as he was before. It must hurt your heart, Ann, to have him hang up on you or complain when you can’t answer his every whim instantly.
Last Friday I was suppose to take my dad to lunch, but I got very sick. So I sent my kids (17 and 14) to go take him out to eat. He got mad and refused to go with them. While we all understand the situation with his brain, it still can hurt your feelings at times.
But your story here reminded me to go hug my dad and be thankful for the connection and memory and life that is still there. So thank you for sharing this.
I will pray for you and your dad as I pray for me and mine. Blessings and PEACE to you, Ann.
Oh, Rachel! The fire! What did you do about housing your dad? And all the other details you shared. Thank you for telling your story, and I’m sorry you’ve got similar things going on.
Oh, Ann, thanks for sharing. I figured something was behind the different rhythm of your writing, but had no idea. It is hard to try to juggle major things and often feel like none are being taken care of the way you want. i am dealing with a variation of this with my mom. Never easy, and thankful for God’s grace and new days.
It’s so good to hear from you! Thank you for commiserating!
This is really powerful. I’m proud of you for writing it, Ann.
You’ve been there for me throughout. Thank you.
Ann, I just met you this weekend at Jumping Tandem, and you were so compassionate & caring in listening to me talk about the loss of my son and even reading one of the poems I’d wrote about losing him. I had no idea you were dealing with the kind of pain that only comes from caring for those who are slipping away from us. Whether they are 24 as my son was, or 86, like your father, the pain of seeing their decline is universal. Praying for you & so grateful for your support in my efforts to express myself with words, as you do so well.
— Debbie
Debbie, your loss is great and it was an honor to hear your story. We all carry different burdens, and listening, writing, and reading each other is one way to help share the weight of it.
Ann, Just reading this tonight. Praying right no for you and all you must carry during these days.
Carol, I was so busy in the spring, I failed to see this comment and respond until now. Thank you for reading and taking time to comment.
Emotional and physical distance have been essential for almost a decade now and I’m starting to see that I’ll have to enter in again soon. I didn’t see it coming but with this, know I’m not alone. “Reason can no longer reach him but maybe it never did.”
Marcy, you are gifted at reading between the lines.
Also, I’m sorry you may have to enter again into some level of chaos.
Ann, sending hugs and prayers your way. We’ve been in the caregiving trenches for some time now, and your words here captured the emotion of it perfectly.
Thank you, Lyli, for taking time to read and comment and offer some hugs and prayer! Sounds like you know more than most some of the challenges of caregiving. I hope you find many moments to write in the midst of your chaos, too. 🙂