Night Blessings

IMG_2822

Are you currently the primary caregiver for a parent or other loved one? Would you like a safe place to go for prayer or just to vent? I’ve recently started a “Catholic Caregivers” site on Facebook … It’s a closed group, but you are welcome to join!

These last few days have been sad ones for Mom. Lots of tears and confusion. She keeps writing and writing, but it only increases her frustration. She doesn’t know how to explain the conflict within her, and she is fighting a battle against accusers none of us can see, let alone help her to resist.

Last night as I tucked her I could see that she was on the edge of tears, and I wanted so much to be able to ease her mind. So I laid down beside her and sang to her some of the songs she sang to me as a little girl. As she grew calm, I decided to try a little ritual that I adapted from something that I experienced for the first time as I prepared to become Catholic, when my sponsor blessed each part of my body in preparation for the journey ahead of me — into the Church.

Now, my mother is a lifelong evangelical Christian, but she is familiar with the little rituals of Catholic prayer, and I hoped that this would help to comfort her. So I made the sign of the cross on her forehead, and said, “I bless my mother’s mind. All her life her brain stored songs and stories and wisdom that she shared with her daughters. Now there are snarls and worn places that are hurting her. Please heal her mind, Lord Jesus.”

Then I blessed her eyes and said, “I bless her eyes. She looked out at the world and saw God’s beauty, and looked at me and saw God at work in my life. Please help her to see that she is a beloved daughter of God.”

Then I went on blessing the other parts of her body, ending with the feet. “I bless her feet, shod with the Gospel of peace. She traveled all over the country to take care of her family, and never complained. Please ready her feet for that final journey, that she would walk with you always.”

Mom didn’t say anything as I left, but kissed me back as I bent down to say goodnight. I think the darkness has closed in around her, and I’m not sure she can hear truth from my lips right now. But I know her angels are taking those blessings to Jesus. And I believe that he will be able to reach where I cannot.

Today the chaplain at her daycare asked us all to come in so he could give mom a “certificate of innocence.” He told mom that he knew she was worried that someone was wanting to bring her to court over something that had happened years ago. He had checked, and everyone has agreed that she has done nothing deserving of standing trial. So he was giving her the certificate to remind her that she is not guilty of any criminal wrongdoing. It’s a tangible reminder that she is where she belongs.

I don’t know if either of these things are going to have the desired effect. When you are dealing with a dementia patient, so much is happening beneath the surface that he or she may never be able to articulate, let alone resolve.

But God is merciful. And he loves his children — even the weak and confused ones. For the weakness and confusion is temporary. Shadows of the glory to come.

 

Advertisements

How a Caregiver Spells “R-E-S-P-E-C-T”

generationsThis week I’ve been thinking a lot this week about how family roles and dynamics change — and don’t change all that much — once dementia enters the picture. Navigating those changes takes a lot of energy, willpower, and … well, sensitivity. And to be honest, that last one does not come easy to me. I’m the kind of person who can organize and execute (pardon the word) complex events and projects. When it hits the fan, I can come up with a Plan B, C, and D quickly and without a lot of fuss.

But as I was reminded earlier this week, people are not projects or events. And they don’t always fit neatly into our plans — and have some pretty big feelings when you try to impose that plan upon them. When my husband and I decided to take mom out of the home she’d been living in and bring her to live with us, our entire family breathed a collective sigh of relief. Yes, it meant getting used to the cold, and not seeing her old church friends every week. And it meant going from the quiet, controlled environment of a memory care facility to the boisterous and often chaotic one here. But she seemed happy. “She is always smiling in the pictures you post on Facebook,” Dad commented.

It turns out, however, that our lawyer was right when he advised us, “Your relationship may change once you stop being the ‘rescuer’ who takes her out of the facility for the day and become her fulltime caregiver. She may turn on you … It’s not easy to grow old and lose your independence, even when decisions are being made for you by someone who loves you dearly.”

And he was right. This week I also discovered that other family relationships can be affected by the new arrangement as well. Hurts and regrets from the past, feelings from the present, and fears about the future can make for some uncomfortable and even painful interactions, no matter how much two people love each other. And when that happens, preserving the relationship means showing a little R-E-S-P-E-C-T.

  • Recognize that there may be underlying feelings, issues, and concerns that must be acknowledged on both sides.
  • Encourage the other person to tell you, privately and confidentially, what they are seeing, feeling, and observing. Hear them out, even if you don’t agree with everything being said.
  • Seek outside assistance and perspective from those who are familiar with your particular situation. Sometimes having additional information can help.
  • Positivity can be a gift when a relationship is struggling. Remind the other person of what she does well, and how she contributes to your life.
  • Email is generally not the best way to resolve conflicts. It reduces the ability to offer empathy, eye contact, and elicit human contact.
  • Compassion is as much about what you don’t say as what you DO say. Sometimes the most compassionate response is … silence.
  • Touch. I once heard it said there are three parts to every good apology … the words (“I’m sorry”), the acknowledgment (“I should have… shouldn’t have … please forgive me.”), and the touch (hand on shoulder, handshake, or even simple eye contact with a smile). That personal connection can be so important when someone is feeling sad, lonely, or upset.

What are some other ways you’ve found effective in showing those you love (particularly those with dementia) respect?

Traveling with Dementia

mom going to seattleThis week my mother and I flew to Seattle to visit my sister Chris. It was the first time in the Pacific Northwest for the both of us, and we both had bucket list items to check off: My mother wanted to see a whale, or the coast of Alaska; I dreamed of having tea at the Empress Hotel in Victoria.

Sunday Mom gets her wish. I got mine LAST Sunday, when I took the Clipper Ship Cruise to Victoria for the day. It was every bit as wonderful as I’d hoped it would be … and I hope Mom has a whale of a tale after our excursion, too.

The thing is, we almost didn’t make the trip. The day before we were to leave, Mom’s delicate internal workings kicked up a fuss, requiring several doses of Imodium to get it under control. I remember what her psychiatrist had said on the last visit. “Your mom may be getting to the stage where travel is too difficult for her. People may need to start coming to her, because travel can be disorienting for dementia patients.”

Mom insisted that she wanted to go see Chris. I think that, like many times in life, the prospect was infinitely more intriguing than the reality. However, we started early, left plenty of time for rests, and contacted the airport ahead of time so they would have a wheelchair and attendant ready for every leg of the trip. We got there safe and sound … and though she is sleeping more than usual, she seems to be having a good time. I know Chris and I are enjoying this quality time with her, too.

Here are some things we did that I think makes the difference between a “not bad” trip and a great trip.

  • Don’t over-plan the itinerary … and build in some down time for both of you. The first two days mom stayed with my sister in her apartment, while I took a trip to Victoria on my own. Bliss.
  • Don’t cheap out. Pay for convenience. We got super-cheap airfares on Delta (who is now my airline of choice for traveling with my mother). It cost extra to check bags, but I went ahead and ponied up so I didn’t have to drag everything we both needed through two airports. I also sent a package via Amazon with toiletry products directly to my sister about a week ahead of time. Worth every penny.
  • Keep routines as familiar as possible. Bring a favorite pillow, her favorite bedtime reader, her favorite tea. Let the host know what kinds of supports would be most helpful (commode, shower bench or handles, mattress pads, etc.). Remember to pack a “travel bag” similar to the one you keep in your own car with over the counter and everyday meds, extra pants and sweater, plastic bags, disinfecting wipes, a change of clothes, list of doctors and emergency contacts (including your own cell phone number), copies of medical card and ID, and snacks and water. Put it in the rental when you get to your destination.
  • As best you can, anticipate the unexpected. Tape a small card with your name, phone number, and medical condition information inside your loved one’s shoe, in case you are separated. When you arrange for the wheelchair, you should also alert the airline that you will be traveling with an adult with cognitive impairments, in case he or she has a breakdown at the airport.
  • Be prepared to pay a price for the adventure. Either during the trip or afterwards, you may experience some temporary setbacks (tears, blank-face, belligerence, or a flare up of other symptoms). Your loved one may be happy to see your host, but be uncooperative or demanding with you, her regular caregiver. I’ve learned not to take it personally, but to chalk it up to the loved one feeling tired or overwhelmed. Tomorrow is another day. Make the most of it.
  • Remember to have fun yourself. Have your favorite treat or drink on hand, and let (or even ask) the host family members or pay a sitter to take over some of the everyday chores or just sit with your loved one so you can take a break as well. Put Netflix on your cell phone to keep your loved one (and yourself) entertained during down times.
  • Slow down, breathe deep, and notice the little pleasures of life. It all passes so fast … and the best memories are often found in the things you didn’t plan.

 

Daycare Dilemma

woman  Sneaky Pete is on the warpath again. At least, I think that’s the source of my mother’s tears this afternoon when she came home from daycare.  “They took a vote,” she said plaintively. “They told me I drool too much to stay there, and they voted 100% that I had to go.”

Now, I suppose it’s possible that one of the other clients had said something nasty. Eldercare, I’ve found, can be a lot like going back to middle school: there are rich kids and drones, physically fit and couch potatoes. Above all, there are mean girls whose sense of social propriety has gone the way of nighttime continence.

“Who was it that said these things to you?” her afternoon aide inquired gently. “If we know who it is, we can do something about it.” Mom shook her head stubbornly. She did not want us to fight her battles. She just wanted a safe place to cry.

After a hearty dinner and a soothing bath, it was time for our nightly tuck in. Tonight’s psalm in Jesus Calling was especially sweet: “In peace will I lie down and fall asleep. For you, O Lord, make me secure” (Psalm 4:8).

Growing old is not for the faint of heart. It must be tough, losing control of functions that you once took for granted … even the ability to eat a bit of food or sing without drooling. Or have a clear sense of self, without being tormented by the never-ending accusations of Sneaky Pete. Lord, help me to remember this when I am tempted to lose patience. Help me to show love, to give her reassurance, so that she might find the strength to endure.

Help! Snail Crossing Ahead

snail-3393204_1920
If you’ve ever been an adult caregiver, you know that finding and keeping reliable, personable at-home workers (especially CNAs) is one of the most challenging parts of coordinating care. While I know many caregivers go without home health care aides, I simply cannot manage the all the lifting and bending my mother needs, and even though I work from home I need to have someone keep an eye on her when I’m working in my office downstairs, to keep her alert and active as possible.

Care.com has been helpful — we found our best worker there. But the payroll service that is affiliated with them was tough for my elderly father to figure out, and so when our second home healthcare worker emailed me today to let me know that she was not going to be able to continue to work with us (she recently passed her boards and was making more money at the other job), I panicked. Mom’s Medicaid is supposed to go through in the next couple of weeks, and she’ll start a new program that handles morning routines and pick up/delivery. But how am I going to hire someone for just a couple of weeks?

The truth is, I can’t. We’re just going to have to hunker down and get through it. This will mean getting up earlier, starting the day sooner, and managing one more person’s daily routine at a snail’s pace. Then again, maybe it’s not such a bad thing.

Tonight’s reading, from Jesus Calling, seemed particularly apt. “Don’t rush about, or think too far ahead of what your next task will be,” I read. “Just focus on the task in front of you, and allow your will to conform with mine.”

Indeed. Isn’t that just the antidote to all worry and stress? To slow down, and stay in the present moment. Lord, thank you for the chance to practice this spiritual discipline again.

 

 

Life Juggles: Multigenerational Family Edition

When you’re living in a multigenerational household, sometimes it helps to know where those teenage “aces” are kept … especially on business trips. (Please pray they’ll hold on till Wednesday!)

Extraordinary Moms Network

3gen.jpgWhat do you do when your husband calls in the middle of a work-related event, in Chicago, and says that your mother needs help getting on her jammies, in South Bend?

Why, you ask to speak to your daughter, of course. “But she’s already gone to bed,” he hedges nervously. I can’t see his face, but I can read the subtext clear as day: “PLEASE don’t make me go in there!” (*sigh*)

“Put her on the phone, honey.” Noises and loud protestations ensue in the background. True to form, said teenager comes to the phone snarling. “WHAT?!”

“Sweetie,” I say through clenched teeth. “Do you remember the talk we had before I left that you needed to help get Mammie ready for bed while I’m gone?”

“I’m sleeping.”

Time for the big guns. “So… You want DAD to go down there and help her get dressed? How do you think Mammie…

View original post 162 more words

60 Minutes on Dementia: The Slow Goodbye

60 minutes dementia

Last night I watched the 60 Minutes special about Mike and Carol Daly and their twelve-year battle with Carol’s Alzheimer’s disease that has eaten up the last years of their 53 year marriage. Dr. Jon LaPook has been journeying with them for the past ten years of that journey, beginning to interview the couple in 2008. You can watch it here.

While the physical and mental toll of the disease on Carol is evident in each segment, her husband’s physical and emotional deterioration was equally heartbreaking. As Carol struggles to recall her age and recounts the loss of her ability to make even a simple meatloaf, Mike’s undiminished love for this woman shines in his eyes. This is the woman he married, who has cooked and cleaned and taken care of him for over half a century. He won’t give up on her after all she has done for him. It would be unthinkable. “When we took our oath, it was for better or for worse. This is what I signed up for in the beginning.”

Years later, he admits that when he said those words to the journalist, she had only recently been diagnosed. The woman he loved was still there; now, ten years later, that woman is gone. And yet he stays, supported by home health workers and watching their life’s savings dwindle away to nothing. “I’m dying,” he says. And so it seems.

Watching this couple face such devastation so bravely, it occurs to me that there are worse things than death. Surely watching the love of your life diminish, leaving you the caretaker of a lifetime of memories as you face years of tending to the shell of the person he or she once was, falls in that category. And when the person who has the disease is the one who, like Carol, did most of the caretaking up to that point, the future looks especially bleak. Mike was once a New York City police officer … but this, this is infinitely harder. Ten days after their 53rd anniversary, he puts Carol in a nursing home — for her own safety, and because after twelve years, he realizes he has reached the end of what he can do. No doubt if Carol were aware of what her beloved husband was facing, she would have tried to ease his burden. But now it is too late.

Watching the program, I am grateful that Mom and I can still have conversations about things that matter. Moving her here from Georgia meant that the social and spiritual ties she enjoyed have been greatly diminished — she stays in touch with family and friends through a private Facebook page, where I post pictures and stories and they share their comings and going. She and her friends regularly exchange cards and notes and the occasional phone call. I tried taking her to a Baptist church here in town, but she insists she likes going with us to our church. We are trying, as best we can, to care for each other.

But Carol Daly is a grim reminder of what is ahead. The day will likely arrive when Mom will not remember who I am, or who she is. Now she can still dress herself and shower herself with minimal assistance; that won’t always be true, either. And she and my father have already seen the worst of it: the implosion of a marriage that lasted half a century. All that remains is duty and deeply cutting shards of memory. In some ways, it will be a severe mercy when those are gone.

My mother watched her father decline in a veteran’s hospital from Alzheimer’s; he was murdered in his bed by a roommate who smothered him in an effort to stop the snoring. Now it’s Mom’s turn, though I am praying that she will die here, with us. And one day … I have already let Craig know that I don’t expect him to be a superhero. “If this happens to me…” I tell Craig. Find a safe place for me. Then get on with your life. I don’t know if he’ll listen — Craig reminds me a lot of Mike Daly, to be perfectly honest. But at least we’ve had the conversation. At least he knows.

Thanks, Mike and Carol, for sharing your story — and for giving other couples a chance to benefit from your story. And for showing what love looks like when in its hardest, purest form.