Tips for Caring for Parent with Dementia

womanIf you give Mom a cookie … She’ll want another one to go with it. Some days, that’s her idea of a balanced diet: one cookie in each hand.

Not always, though. Most days she’s pretty careful to eat and drink like someone with a history of diabetes. But some days, dementia wins and the child in her comes out to play.

I’ve decided that caregiving for someone with dementia is a lot like parenting a toddler. Some differences, of course … I would always want to treat her like the adult she is, and give her as much say in the details of her life as possible (clothing and drink options, etc.) But this is a marathon, not a sprint: To some degree, it’s important to manage the chaos. Especially since I have two chaos-generating teenagers as well as a husband to think of. And the dogs. Oh, Lord, the dogs.

Some of the same lessons I learned (a bit too late, in some cases) while raising Chris and Sarah have come in handy for taking care of mom:

  • Enjoy the moment. When they were little, I would attempt to work when they were on the floor playing. In retrospect, life would have been much sweeter if I had joined the fun more often, instead of powering through. Now, with Mom, I move at a slower pace — but, thanks to the kids, I’ve learned to stop fuming and to reset my internal clock. I may not get as much done — but I’m enjoying it more.
  • Think twice, act once. Thinking through the steps of a task while changing, bathing, or transporting her saves wear and tear on the body from lifting her or getting myself on the floor (or up again). Gathering everything ahead of time – lotion, clothes, socks and shoes, wipes and bags, etc. – and putting them in arm’s reach can save a lot of wear and tear on both of us.
  • Go-Bag at the ready. When the kids were little, I’d never go anywhere without an emergency bag (diapers and wipes, sunscreen, change of clothes, snack and juice box, activities, emergency Diet Coke and clean shirt for me). Add a few tabs of Ammodium and an emergency set of morning meds, it comes in handy now, too.
  • Morning and evening routines make for a better day. When the kids were little, doing the same things in the same order in the morning and again at night was our best shot at a good night’s sleep. Now they are MOM’s best chance. Change into nighty, warm socks, tuck in with a kiss, soft music while I read to her, lights out. After about 10 minutes, gentle snores come over the monitor. All is well. The next morning, turn on a gentle light and a five-minute warning before getting her up helps her to be relatively alert and steady on her feet.
  • Soothing music and baby monitors. As a new parent, I discovered that the monitor was as much about my peace of mind as their safety – which holds true for the elderly, too. When she seems especially agitated, my piano music or a few Gospel favorites can soon get her humming along.
  • Encourage independence as much as possible. At bathtime, a sitting bench and detachable and/or adjustable showerhead allows her to do much of her own personal care and preserves her modesty. I’ve also learned to give ample time for her to attempt to dress and undress herself. Just as when they were little, it would be much simpler and faster for me to do it for her … but faster is not always better.
  • Anticipate changes. Ten years ago, Mom could whip up a double batch of cookies faster than you could say “oatmeal chip with walnuts.” Now I do the mixing and oven work, and she scoops the dough onto the trays. Once I made the mistake of leaving her with my teenage daughter to finish the last few pans … and Mom burned herself badly. I would never have left a toddler alone near the stove. This incident taught me the hard way that I can’t leave her, either.
  • Bribes can be your friend. As every experienced parent knows, the occasional bribe is a useful tool in the parental tool belt. The same is true for caregiving. Mom will do almost anything for sweet potato pie. I have four of them in the freezer, just in case I need to hack off a slice to make the pills go down.
  • Beware diaper butt syndrome. It’s hard to take advice from someone whose butt you once diapered. Even with dementia, parents sometimes need to hear the tough messages from others (doctors, pastor, hired caregiver, friends) in order to let it really sink in. When Mom refused to take her meds because of her auditory hallucinations, I made an appointment with her doctor, who wrote a letter I could post on the refrigerator that reads: “Sandy, as your doctor I’m telling you to listen to your daughter. She is in charge. Take all your meds every day. Drink lots of water. Keep eating to keep up your meds. If you do these things, you will stay as healthy as possible, as long as possible.” From that moment, she has not missed a pill.

What tips would you add to the list?

 

Advertisements

The Gift of Perspective

j0438992As weeks go, it was not exactly the stuff memories are made of — not good ones anyway. In our extended family, one was diagnosed with prostate cancer, another had a gall bladder removed, a third was hospitalized a second time for serious mental health issues. The school called, reporting an incident with one of the kids. On Valentine’s Day, my husband went to have a suspicious growth removed. Plus there was the whole matter of the relentless white stuff that God kept pelting down from heaven like some cosmic snowball fight he was determined to win. Oh, and our ceiling is leaking from our (second floor) bedroom to our (first floor) kitchen. If I’d lit a candle for every intention, I would have set the church ablaze. Yes, one of those weeks.

But as I sat down to lunch with a friend yesterday, she looked at me and said, “I can tell life is good for you right now. You are glowing with happiness.”

The funny thing is … I feel happy. My life is infinitely better than it was this time last year. Sure, we have to move (again) in two months … but it’s to a job I love, to work with people who give me freedom to do my best work, and trust me to do it well. Yes, my child had a problem at school … but both my kids are HOME, and I get to tuck them into bed at night. Yes, our heating bills have been more than $800/month for the past two months … but we have been able to put food on the table, even so.

The sick relatives are a bit tougher. It’s always hard when a family member is hurting at a distance. It’s natural to want to lift their burden, or at least carry part of it for them. More than anything, you want to do more than pray.

But sometimes … sometimes trusting God is the only thing to do. When we open our hands and offer our burden back to God, we become conduits of grace to bring about God’s will in this world. And that is no small thing.

So, go ahead. Light that candle. Pick up that rosary. Breathe deeply, and speak aloud your intention not to let worry and fear prevent you from trusting the Creator of all things good. Ask God for the gift of perspective, that knows our heavenly Father does not leave his children burdened by life to their own devices. Rather, in the words of C.S. Lewis, “He shouts to us in our pain,” making us stronger and more compassionate, better able to recognize and respond to the hurting world around us.

At some moment of our lives, each of us is called to live in the Pascal Mystery. Is God calling you to carry your own cross, in the footsteps of Christ? Or is he asking you to follow at a distance, like the Blessed Mother? Both are needed, but you will only have grace enough for one.

31 Days of De-Stressed Living, Day 27: Wear Something Pretty

beautiful womanIt’s a chicken-and-egg kind of thing: Do we feel good when we look good, or do we make more effort to look good when we feel good? Maybe it’s a symbiotic kind of relationship.

I will tell you this: For the past several weeks when I’ve woken up, I’ve been so sore I could barely roll out of bed and into a pair of sweats. One of the perks of working from home, I guess. But after a night on a new-to-me featherbed, I jumped out of bed, showered and slathered on my favorite face cream, and put on a GOOD work outfit. Yes, just to stay home.

And I feel … great!

I’ve been thinking about my mother, who has been in a hospital for the past two weeks. She doesn’t want to be there, but she can’t go home yet. This morning I’ve been thinking about how to help, eight hundred miles removed, and I remembered a time when I was in the hospital after my car accident (I was 18), and someone unexpectedly lifted my spirits.

Crabtree & EvelynThree weeks in bed will leave anyone a bit grumpy. One day my friend’s mother surprised me with a visit. She had a basin and several large plastic bags. “Let’s get you cleaned up,” she smiled. Arranging the bags underneath my shoulders and torso, and the basin under my head, she washed my hair and shaved my legs, then slathered on Crabtree and Evelyn body lotion. (The scent of gardenias still makes me smile.) Finally, she did my nails and makeup.

Thirty years later, I still remember her kindness.

And now, remembering that day, I know just how much it will help my own mother, to feel like her beautiful self.(For those who need a little bedside beauty, try this portable wash basin!) bed wash basin

If you’re feeling stressed out and grumpy, maybe it’s time for you to primp and pamper yourself a bit. Wear something beautiful — a pretty scarf, a soft sweater, a new pair of shoes. It won’t change the journey … but it might just put a spring in your step!

Photo Credit: “Always” by Stella Im Hultberg, from “Smashing” magazine’s “50 Beautiful Feminine Illustrations”.

How to Get Rid of Impatience

catholic crossThis week I found myself over at “Whispers in the Loggia” and came across Rocco Palmo’s post dated May 21, 2013 containing the homily of Pope Francis, who spoke of his personal encounter of faith.

In his own warm and personable way, Pope Francis recalled receiving the personal challenge of his “Nona” (grandmother) to follow Jesus — and later encountering a priest at his local parish, who was waiting to receive his confession. “He had been waiting for me for quite some time,” said the Holy Father. He would never forget it — and it had a profound effect upon his decision to become a priest.

I smiled as I thought of this confessional encounter, remembering my own encounter with Jesus last weekend, an unexpected gift that I found in a poor old parish in downtown Reading. To be honest, I had gone in not expecting anything remarkable, going through my laundry list of faults and sins. Again and again I found myself saying the same word: impatience. Impatient at home. Impatient at work. Impatient with my family.

“You know the best way to get rid of impatience, don’t you?” came the voice from the far side of the screen.

“Tell me, Father.”

“Not by praying for patience … That only brings more challenges. You can ask for perseverance, and that will help. But the most IMPORTANT thing you can do is fast.”

“Fast? From food?”

“From food, from radio, from television. Like at Lent. When we fast, it reminds us that we are not in charge of our lives. It puts our own will in the back seat, and allows Jesus to take the driver’s seat. Fast, and you will find your impatience disappear.”

In that moment, a light went on. It was a timely gift. In that moment, I knew Jesus had been waiting to give it to me.

Healing Childhood Trauma

This week on CatholicMom.com, my column deals with the signs parents should watch for in their children that may indicate they are experiencing trauma and need professional help. The source of the trauma varies from child to child and from family to family: divorce, death, separation, neglect, abuse, financial stress, the list goes on. For children touched by adoption or foster care, unresolved trauma from the circumstances that caused them to be separated from their birth families can affect them into adulthood, even if they are loved and supported by their new families. Love, in and of itself, does not always “conquer all.”

What I wish someone had thought to mention to us when we first got our children, is that unresolved trauma can lie dormant for a time — only to bite you in the glutes as the child approaches adolescence. So parents need to keep a watchful eye, especially in children who have been diagnosed with “invisible disabilities” such as autistic spectrum disorders, ADHD, ODD, attachment issues, and so on. And parents of children with a history of abuse and neglect must never let their guard down entirely. Sneakiness and deceit — even with children who are otherwise good and truthful — is part of the disorder.

Another thing I wish had been pointed out to me is that trauma affects parents, too. After years of dealing with acting-out behaviors, your parent brain may not catch the more subtle signs of “something is not right here.” Not only do your kids need help in healing . . . You may also need help in dealing with the stress.

This week’s Gospel, in which Jesus gives dire warnings to those who cause one of his “little ones” to stumble, predicting millstones and a watery destruction, also provide a faint hint of hope to those who hear with the ears of faith. For the Christian, “death by water” has an entirely different connotation than it does for those who have not experienced the “dying with Christ” and “rising to new life” that baptism represents. Through our baptism, we do have all the graces we need to complete the journey. The path is not without suffering, for we follow in the steps of the Savior who suffered and died for us. But as we travel the road together with our children, we can persevere in faith, trusting in the perfect healing that is to come.

On Mercy: Thoughts from the life of Catherine of Siena

As the dust of last night’s elections settles, it seems like a good time to mention a charming biography I’m reading right now, Catherine of Siena: A Passionate Life by Don Brophy (BlueRidge Press).

Catherine found herself constantly contending with politics, both temporal and ecclesial. She herself had many detractors — those who despised her for being an uneducated female; those within her own order who protested the fact that she wore the habit of the Dominican tertiary (Mantellata) yet had a public outreach that included the spiritual guidance of men; and those who regularly accused her of all kinds of faults, especially pride and wilfullness.

Her response to her detractors is worth noting. “The sword of divine charity,” she wrote, “must be hidden in the house of our soul of true knowledge of ourselves. For when we know what we are not, and that we are constantly producing nothingness, we at once become humble before God and before everyone else for God’s sake” (p.85).

It is by continually seeking true self-knowledge — of our relative littleness in the eyes of God — that we are able to progress in true charity.  When those we love stumble or fail us personally, it is easier to forebear when we recall our own shortcomings.  When those we find difficult to love cause added pain, or simply win the battle of the day, we can detach from anger and bitterness more readily when we recognize how little it will matter in the end, and that God loves our enemies just as he loves us and continually longs for our reconciliation.

Therefore, we may never be more Christ-like in this life than when we extend mercy, measuring a person not by the humiliation of his (or her) worst moments, nor out of the expectation of their periodic triumphs, but with the understanding of what it is to be human — with all the frailties and graces of our common nature.

Heavenly Father, you are God and we are not. You hold time and space in the palms of your hands. You sent your Son to identify with the human race; from his side flows rivers of mercy, stemming the tide of terrible justice, the natural consequence of our continued rebellion. Help us now, by your Spirit, to carry your divine image out into the world fearlessly, consistently, and with great faith. In your Holy Name, Amen.

Help Your Neighbors, Get Rid of Clutter … Win a Trip To Disneyland!

garageAll you have to do is participate in “America’s Garage Sale,” sponsored by Focus on the Family!

In these trying economic times, many families are struggling to provide basic necessities for their families — while others are sitting on a mountain of treasure we never use! (I include myself on that one.) Let’s share the wealth!

When you’re done, you have another opportunity to share!  Donate a portion of your proceeds to a local soup kitchen, domestic violence shelter, or other non-profit organization. Give some of it to help a family who is trying to raise the money they need to adopt a child, or to provide back-to-school backpacks for foster kids.

God loves a generous giver … won’t you be a blessing to someone this weekend?