Tips When You Suspect Your Loved One Has Dementia

carsharblogpic

Like most people, my family was unprepared for my mother’s Alzheimer’s diagnosis. We saw the signs, but we didn’t want to admit that such an awful thing could happen to our mom.

And so we didn’t talk about the hard things for too long. By the time we were ready to make a plan, we’d already hit crisis stage.

Many of my friends are now in a similar position, and you may be, too. Here are my top recommendations for how to best care for your loved one if you suspect they may have or be heading toward dementia.

1. Get them under the care of a gerontologist. 

A gerontologist is a doctor trained in illnesses in the elderly. My mother had heart problems, a seizure disorder, diabetes, was a stroke risk, and was sensitive to a number of Alzheimer’s-related medications. We needed ONE doctor who understood dementia and could best advise us regarding her medications and long-term care. Gerontologists understand with the various forms of dementia and what medications can best help your loved one, as well as drug interactions and how best care for those with dementia-related needs.

2. Have your loved one assessed by the Area Agency on Aging in the area where they live to find available services.

For a number of years, my mom and dad lived with my husband and me. We found an amazing adult day care program for my mother that offered me respite three mornings a week. A bus came to our home and picked up my mom (and dad) at our doorstep free of charge. The day care program offered programming specific to my mother’s needs, and they also bathed her. This was hugely helpful to me, since Mom was terrified of water, and bath time was a battleground. I’m convinced that this program (one of several that we accessed) extended my mother’s cognitive abilities, as well as the time we were able to care for her (and my dad) in our home.

3. Consult an elder care lawyer.

Our family has never regretted this decision, even though it meant an initial financial “investment,” which was returned over and over again. This decision saved my mother and father tens of thousands of dollars. It preserved funds that are still available for my 93-year-old father’s care. Elder care lawyers can help you and your family make the best possible decisions regarding your loved one’s, your parent, or your parents’ estate. If you live in Michigan or West Michigan, I recommend Tim Alles, who practices in the Grand Rapids area.

4. Begin talking and planning ASAP. 

I recommend Jolene Philo’s Caregiver’s Notebook (published by Discovery House Publishers) to help you begin the discussion and make appropriate preparations. It’s a great tools. Of course, my books are also helpful, especially Ambushed by Grace: Help and Hope on the Caregiving Journey. This book is packed with valuable websites and resources for caregivers who may feel caught off-guard.

5. Don’t be afraid to ask for help.

Bring your loved one’s physician, pastor, or trusted friends into the discussion. Work to put together a long-term plan with flexible options. What works today may not work tomorrow. And above all, turn to God as your ultimate resource. We can never be enough to meet the needs of our loved one. God is with us. He will supply the wisdom and strength that we need every step of the way.

What about YOU? If you’ve been a caregiver for someone with dementia, what would you recommend to others?

Prayers While You’re Waiting

grieving

Waiting is one of the hardest things we’re called to do. And yes, I believe as Christians we’re all CALLED to wait. This is because waiting accomplishes valuable goals, if we allow it to:

1. Waiting can shift our focus from the superficial to the eternal. 

Waiting usually makes us impatient. We want to see results NOW. We usually have our hearts fixed on getting things our way. And God uses those longs pauses to remind us that we’re not running the show. That there’s a bigger purpose than what we see in the day-to-day. That our view is limited.

2. Waiting can help us see our priorities.

Tough times usually reveal our hearts. And waiting for answers during those times show us what we REALLY think is important in life. If we’re wise, we’ll use this time to study our hearts, motives, and goals. But learning more about those things is only helpful if we grow in wisdom as we do it. This means learning to think more like God and to see life from his perspective.

3. Waiting can help us draw closer.

To people and to God. It opens our eyes to things that are truly important, if we allow our hearts to be sensitive to the Spirit of God. As we learn dependency on God, we learn to love people better. Waiting isn’t a passive thing. We wait with expectation and hope that God is at work, that he is working out the details of our lives for our best interests and to his glory, and we can therefore PRAY and ACT with gratitude and faith.

PRAYERS WHILE YOU’RE WAITING

1. Pray for wisdom, and ask for wise counsel. Spend time in the Word of God, but don’t be afraid to ask godly mentors for their opinions and advice.

2. Ask God to reveal what he’s saying to you, then pray, meditate on his Word, and journal. Don’t expect to hear from God if you’re not listening to him, and the best way to listen is to spend time in Scripture.

3. Cast your fears on God. That means throw them in his direction, then turn your back and walk away. Refuse to go back and pick them up again. And if you do, throw them back to God and turn away again. And again until it becomes easier to trust him to pick up those worries for you.

4. Be grateful for where God has you today. I can do this because today has a purpose–even though the circumstances may stink. Even though it hurts. I don’t think God expects us to be grateful for pain–but I CAN be grateful because I know God takes the horror of this life and creates purpose and even beauty from it.

Four Ways Chronic Illness Tempts Me to Lie

 

Photo Credit: PlayBuzz.com

Photo Credit: PlayBuzz.com

My 93-year-old dad calls me every day around six at night. Dad has Asberger’s, and to him the world is black and white.

To Dad, everything should have an answer that fits inside a box–especially my illness.

Except that it doesn’t. After three months, doctors don’t have a diagnosis for The Thing in My Brain Stem. Even docs at Mayo Clinic are puzzled.

Dad calls every night with the same questions:

“Are you better?” (Real answer: No.)

“Have they figured out what’s wrong with you?” (Real answer: No.)

“Why not?” (Real answer: I wish I knew. Cuz it’s something weird.)

I HATE upsetting my dad. I don’t want to tell him how sick I really am. He doesn’t have the emotional wiring to understand what’s going on. And so I tell him as little as possible.

The same is true with some of many people. I divide them into two categories: Friends Who Want to Know About YOU and Friends Who See You in a Box.

Friends Who Want to Know About You

  • want to know how you really feel and know that how you look can be irrelevant and misleading.
  • will make time for you no matter how busy they are.
  • will accommodate your needs, your pain, your limitations.
  • will want to know what support looks like to you.

Friends Who See You in a Box

  • ask as few questions as possible.
  • make time for you at their convenience.
  • feel uncomfortable talking about illness, pain, and limitations.
  • define “support” according to their own limited view of need and illness.

Four Ways Chronic Illness Temps Me to Lie

1. I answer superficial questions with superficial answers. It’s easy to tell when someone is asking a question to be polite or socially correct, and it’s easy to emotionally withdraw and answer with less than the truth.

2I can tell when people are growing frustrated hearing the same answers. It’s been three months since doctors first discovered my brain wasn’t quite right–or something like that. By now friends and family are well beyond wanting to hear the same answers for my pain and symptoms. But the truth is the truth.

3. People really don’t care that much. They say they do, but they don’t. Hey folks, call, text, post a comment, send a card, make a call, Skype, IM, or do something. Don’t say you care–your actions say it all. So after months of silence or superficialities, I step back, but I can’t bring myself to say the words out loud.

4. I smile when I don’t mean it. Because it makes other people feel feel more comfortable.

 

What about YOU? Has chronic illness tempted you to lie to others? Why? How do you cope?

The Blessings in Chronic Illness

Second Day of Infusion Therapy

Second Day of Infusion Therapy

A lot of people seem to regard illness as something like curse–something that we need to move past as quickly as possible so we can get to Victory. Overcoming.

And as someone who’s suffered through brain surgery with a diagnosis of glioma, then demylenating lesion and an Inoperable Walnut-Sized Thing in my brain stem, I can tell you that I don’t much like being sick. I’ve felt downright rotten for three months now, and I still don’t have a diagnosis.

So don’t get me wrong. I’m a fan of healing, and I believe God heals.

I just don’t believe God’s plan is to heal everyone all the time.

  • God uses people with “street creds” in hospitals, clinics, and other medical settings to talk about hope when life hurts. Really, really hurts. I mean, like when you get a craniotomy for Christmas. And all your IV sites explode. And even Mayo Clinic docs can’t figure our what’s going on inside your head.

We live in a messed up world where sickness and disease are part of life. And yeah, I know the verse that tells me that by Jesus stripes I’m healed. I believe that verse is true..

Every good thing I experience in life comes because of Jesus’ redemption for me. I just don’t think that as long as I’m living in the muck and mire of this earth, I get a free pass on suffering. I believe I’m actually called to SHARE in Jesus’ sufferings.

  • As I work through my pain and frustration, I AM showing people what victory looks like. I’m showing them what “overcoming” means on a day-to-day basis. 

That doesn’t mean I’m always singing songs. Pain hurts. Jesus shed real blood for us. He cried in real agony for us. He suffered. I’m called to take my my cross and follow him. If he chooses to heal me, I’ll take it–gladly. If I live for the next thirty years with chronic illness like millions of believers and nonbelievers in this nation every day, I will do it with as much gratitude and grace as I can muster, with the Spirit’s help.

  • Victory doesn’t depend on healing in the here and now. It means embracing God’s goodness in the here and now, no matter the pain.

  • Embracing God’s goodness in pain means learning more about God–snuggling into his character, knowing him more, trusting him more, wherever he takes us. 

What about YOU? How have you embraced God’s goodness in your pain?

How to Help a Friend with a Brain Illness

migraineIt’s been nearly two months since I was diagnosed with a nickel-sized lesion in my brain stem.

It’s been a long wait for few answers. While I’ve been told my lesion (not the same as a tumor) is a demylenating lesion (like the insulation coming off a wire and causing inflammation and irritation in the surrounding area), doctors have been unable to provide me with a specific diagnosis, and thus a clear treatment plan.

I’ve undergone brain surgery to obtain a biopsy sample, and I’m doing fairly well, considering the fact that a grape-sized something is stirring up trouble inside my brain stem–pressing on nerves and control centers the monitor everything from my vision and speech to my breathing and walking.

So what should you expect if a loved one or friend is experiencing a brain tumor or lesion similar to mine?

Here are a few of my symptoms. They may not represent everyone’s, but they’ll help you get an idea what life is like.

1. Exhaustion. I tire very quickly. I’m usually asleep by 8:00 at night, and simple tasks like getting up to get a drink of water can feel overwhelming.

2. Emotional outbreaks. I cry very easily, which I’ve learned is very common for those who’ve experienced brain tumors or lesions. I also irritate more easily, partly because simple tasks can seem overwhelming (buttoning buttons, keeping track of my glasses because I take them off 100 times a day because they sit on my incision site).

3. Reduced focus. It’s hard for me to find my clothes in my closet or find a pen on my cluttered desk. I often feel stupid because simple tasks are so much harder for me to do.

4. Pain management. Yes, I can feel the lesion in my head. It’s a weird sense of pressure, but it also causes pain in my face and influences my walking, vision, and other functions. I also struggle with migraines.

5. Mind management. Imagine knowing that you have a sizable “something” (a life-threatening “something,” at that) cuddling up against your brain stem. And it’s taking doctors MONTHS to figure out what it is and what to do with it. It’s a challenge not to micro-analyze every pain and sensation in your body and to focus on details and scenarios that could drive you crazy. My choice is to remain positive and keep moving forward–but it’s a daily choice and battle. And the center of my focus is always the goodness of God–my hope.

So how can you help your friend or loved one?

1. Listen. Don’t feel like you have to provide easy answers or Bible verses. Let emotions roll when they come, and provide comfort and support.

2. Provide safety. Let your loved one know that you’re there for the long haul. You’re not bailing because they’re facing a battle. You’re in it with them. Then show them consistency, compassion, and advocacy when they need your help.

3, Learn. Learn about their illness, it’s treatments, and how you can best provide support along the way. Look for local or online support groups that can help you better understand both your loved one’s illness and your support role.

Have you supported a loved one who fought a battle with brain tumor or brain illness? How were you able to provide support for them? Share your wisdom and experience with us.

Personal Medical Update

Second Day of Infusion Therapy

Second Day of Infusion Therapy

THAT WAS THEN

In 1999, after visiting three hospital ERs for nausea, vomiting, dizziness, and tinging in my face, I was diagnosed with a nickel-sized demylenating lesion near and actually in my brain stem. (Nerves are covered with a protective myelin coating, and when that coating comes off, inflammation is produced in the surrounding tissue, causing a “lesion” or spot, which is NOT a tumor.)

My condition was considered inoperable. A number of doctors at various hospitals and finally at Harper Hospital and Detroit Medical Center finally determined that it was a demylenating lesion and treated it with a burst and taper of steroids that shrunk it immensely, giving me back my life (for a time I was unable to walk or care for myself in any way, and my vision was double. I could do nothing but lie still in an effort to avoid unrelenting vomiting.)

The steroid treatment was dangerous but highly successful. For fifteen years, I’ve lived with MS-like symptoms but have managed life quite well, traveling, speaking, consulting, and writing.

THIS IS NOW

Many of you already know that just before Christmas I went to my family doctor because I was experiencing pain and tinging on the left side of my face. It felt to me as if a virus was traveling up my trigeminal nerve in my face. The pain was quite annoying. Actually, it was severe.

My doctor gave me an anti-viral medication but cautioned me that I would probably need to visit the ER for further testing. Within 48 hours, I acted on that advice. I felt truly unwell, and I’d been experiencing extreme fatigue for months, as well as other symptoms that were reminiscent of my episode in 1999 that had landed me in the hospital.

Doctors did, in fact, find another nickel-sized lesion in the identical location in my brain. They diagnosed it as a glioma–a very insidious diagnosis, and scheduled me for a craniotomy and resection in order to remove as much of the lesion as possible for biopsy.

They were able to remove 20% of it–the other 80% was too deeply in the pons of my brain and too dangerous to get to.

Nearly a month later, I’m still without a solid diagnosis. Docs have determined the lesion is demyelinating and NOT a glioma, which is hugely positive. But my biopsy, which was sent to Mayo Clinic, was inclusive for a specific diagnosis–for instance, MS, which is a specific demylelinating disease.

So where does this leave me?

1. My neurologist has referred me to Mayo Clinic for a second opinion.

2. In the meantime, I am undergoing steroid infusion therapy for five days, in an effort to reduct the inflammation and painful trigeminal neuralgia being caused in my face.

3. I am undergoing further tests–a Visually Evoked Potential, a thoracic MRI, and possibly a spinal tap. I am also being referred to a hematologist because of elevated protein in my blood.

4. Waiting on God, as we make preparations for a trip to Mayo Clinic in the dead of winter.

5. We are also juggling my medical trips with Dan’s and Wanda’s which is quite a challenge, given our combined medical challenges.

6. Leaning into the faithfulness of God and his unchanging goodness.

7. Learning new things about grace, pain, stillness, suffering, silence, change, and God’s love in the places we often fear most. He mercies are new every morning. This is not easy, but why would it be? I do not discount the challenge, but I embrace my only HOPE in this place.

What about you? In what ways have you found new mercy and grace in the hard places and suffering?

 

 

 

 

Three Things to Never Say to a Chronically Ill Friend

Photo Credit: granitegrok.com

Photo Credit: granitegrok.com

1. “I’m too busy.”

Every choice you make shows your life priorities. With these three little word, you’ve told your friend that they’re last.

After grocery shopping. Scrubbing your toilet. Talking to other friends. Stepping away from that customer, heading out of that meeting a few minutes early, or writing that last paragraph.

Or maybe even skipping a church service to worship with them.

Chronic illness strips life to the bare bones. People who suffer with pain or daily defy death are busy about the task of survival. More than most people, they know the meaning of “too busy.” And most are still finding ways to give to others on the journey.

Saying you’re too busy invalidates the day-to-day significance and sanctity of their courage and resilience.

Busy is not activity.

Busy is meaningful engagement with the work God has given us.

3. “Including you could make other people feel awkward.”

Yep. Christians really say this. And when they don’t say it out loud, they live it by avoiding, excluding, or consciously or subconsciously condescending. They feel awkward with wheelchairs, catheters, other strange medical equipment and procedures, and friends who just never get better year after year. They want to offer solution and feel inadequate. So they drift away.

They use their discomfort with other people’s needs as a measuring stick for inclusion. Clearly this is not what Jesus taught. Jesus was never concerned about offending others when He extended compassion to the suffering. He always met people at their point of need. His ministry was public, so people could see his heart and learn.

As believers, our role is to become compassionate advocates on behalf of the sick and broken. We need to educate ourselves about their needs and join them in those places. This will mean sacrifice, discomfort, and speaking up on their behalf. It will be learning to see through their eyes and teaching others to see them with dignity. And perhaps above all, offering the simple gift of presence for the long haul.

3. “Why aren’t you over this yet?”

Judgment.

In many circles, Christians grow impatient if healing doesn’t come quickly. People with chronic illness and especially invisible illnesses feel judged, isolated, and labeled as somehow less than spiritual.

Failures.

Lacking in faith.

Or simply navigating the medical field in ways that others disapprove of.

Jesus was intolerant of spiritual judgment. He offered compassion to the suffering. And he told us to expect that WE would suffer, and that the path to being conformed to his image would require learning tough lessons.

Disease and decay is part of a sinful world–whether we experience aging eyes, rheumatoid arthritis, or saggy skin. Some people experience miraculous healing. Some do not. It’s God’s business why, and his plan to use us for his glory through miraculous healing or chronic illness. Either way, his glory and blessings in our lives are not diminished, and we don’t feel like we need to apologize for him. Ever.

So if you feel impatient or judgmental of the chronically ill or prideful in yourself, your seeming faith or theology or medical approach over someone else’s, stop it. God hates pride.

Ask what you can learn from those who are suffering. Walk beside them. Listen. And offer a learning, compassionate spirit.

  • Perhaps you’re a middle-aged Sunday School teacher. What can you learn from a fourteen-year old girl who has to go to school and cath herself to get through the day? How has she learned to cope?
  • What about the single mother of three who lives two hours from the nearest children’s hospital, where here toddler daughter receives ongoing inpatient medical care for her cerebral palsy? How does Mom care for the other two kids at home while caring for her daughter in the hospital and her own diabetes while maintaining a job and income?
  • Or what about the twenty-three year-old in the church pew beside you who wheels into church through the snow to navigate life and lives with her parents? She’s undergone forty surgeries for her cerebral palsy and lives with a shunt in her brain. She has no hope of dating or marriage. She began steroid therapy before the age of ten, which stimulated early breast development and devastated her endocrine system. Her health has devastated her dreams for a husband, children, and she suffers from PTSD from a live of medical procedures. What can she teach you?
  • Or more importantly, what rich gifts can these individuals and other bring to the church–to us? What are we missing when we are too blind to enter into their stories with passion, grace, and humility?

What do YOU think? I’d love to hear from you.