Archive for June, 2009

“I Worry All the Time:” Long Distance Caregiving Concerns

If you’re a long distance caregiver, I don’t have to tell you about the worry and guilt. It just comes with the territory. Caregiving is difficult enough, but it you live 2, 4, 8 hours away, you fret over the million things that could go wrong.

Not long ago, I met Nancy, a daughter and long distance caregiver to her dad who was 93 and as stubborn and unbendable as a hardwood tree. He lived in Tampa. She lived in Seattle. On top of that, her husband had Parkinson’s and they were seniors caring for her elder dad. She told me she had flown down (emergency trips which also cost a lot), three times in a little over six months.

We talked about options: more community involvement (church, area resources, dad moving in with them, an assisted living home, and a geriatric care manager. The problem was, dad was quite coherent and could not be convinced to leave his home even though he fired home health aides every few weeks.

Sometimes there are no easy answers. You can’t bend someone’s will to your way of thinking. The worry and guilt won’t go away and all you can do is to try different options and hope that one clicks in place.

Should you respect your loved one’s wish to live the way they want if their choice greatly impacts your life? How will they do if you move them across the country? Will they adjust? Should you uproot and move closer to them?

If you’re wondering how to manage all this, one great online resources is the National Institute’s on Aging list of twenty questions for long distance caregivers. 

Each family must face that question and decide what’s right for them. Sometimes reasoning works. Sometimes inviting them for a visit can turn into an extended stay. The old honey draws more flies. Sometimes you have to “pull rank” and put your foot down because you are in many ways, responsible for your loved one’s care.

Sometimes they have to go without assistance for a short period of time to realize they can’t make it alone, without your help. Sometimes it’s one big power trip. Sometimes it’s fear. Most of the time it’s a lot of things and we grapple to do what’ right–but what’s right has to balanced with what’s right at for the time and situation and for all involved.  

One thing I do know, worry needs boundaries. If not, it’s like kudzu. It’ll grow in rampant leaps and leave you choking with fear and anxiety.

Do what you can. Help how you can. Keep seeking solutions. Be at peace with the rest.

June 26, 2009 at 2:45 am 3 comments

Caregiving Both Parents: A Double Whammy

Many people are finding that they’re not only caregiving one parent–but two.

I call that a double whammy. Caregiving at its best is both rewarding and challenging, and caring for two just doubles your rewards and your challenges.

I met Sarah, a retired school teacher at a recent caregiver’s conference. She moved back in with her parents last year (she has 2 siblings but they’re still employed full-time), and she thought having them both in their own home would make things easier. She tries to keep her mom and dad on the same schedule (food, medications, sleeping patterns), but her dad has Alzheimer’s and her mom’s a diabetic who can no longer walk.

Dad has sundowner’s so he’s just getting riled as mom’s settling down.

They have different doctors and it’s difficult to try to coordinate the appointments. Even their med times don’t match up. Dad keeps slipping out the back door (she just got a house alarm to hopefully help alert her when he’s on the lamb), and mom’s showing signs of depression.

“Help!” she said after I finished my presentation. “I feel like my head’s going to explode!”

Here are some suggestions for those who are caring for two:

  • Get help. Don’t try to fly solo on this one. You need two sets of hands for your mom and your dad. Check with your  elder-affairs office to get a list of local resources. (Each state has one)
  • Enlist those siblings and extended relatives! I don’t care if they live 500 miles away. Put your foot down and insist on help. They can pay for an over-night sitter so you can get some sleep. It’s the least they can do to help out if they’re not physically able to pitch in. Ask for help–from your church, your community, and from your neighborhood. People need to feel needed and if you’re caring for two, you certainly have needs!
  • Forget about the inheritance. Get that durable power of attorney signed while your parents are “with it” enough to sign it and use your parent’s money to help them. It’s the best use of their savings–and it’ll leave less for the siblings to fight over. Trust me, your health (and mental health) bills will cost far more than you’ll ever inherit.
  • Check into care homes in your area. It’s a misnomer that you have to sell your parent’s house in order to quality for MediCare. Find out your state’s guidelines by asking various homes for a break down in cost and coverage. It’s very likely you won’t be able to keep both of them at home long-term. Begin to make plans and know what’s available to you.
  • Don’t try to do it all. Covering the basics of food, meds, and doctor appointments will keep you hopping. So what if the house is a wreck and dad’s wearing the same shirt three days in a row. Do the best you can and prioritize. Let the rest go.
  • Find out about respite care. I know the concerns: they won’t like the person, they’ll get off schedule, you’ll worry the whole time. That’s all true, but you still need a break–and you may find that much to your surprise, your parents will like having a new person around and might even be on their best behavior.

Caregiving both parents isn’t easy, but it is a privilege.

It means you still have your mom and dad with you–and you’re allowing them to be together as long as possible. That’s a gift.

June 22, 2009 at 11:14 pm 4 comments

I Just Found Out My Mom (or Dad) Has Alzheimer’s: What Do I Do First?

Those first few days or weeks after you find out your parent or your spouse has Alzheimer’s is like living in a dense fog. You can’t think straight. You don’t know who to tell. You can barely say the “A” word out loud. Maybe you shifted from just being a daughter to a caregiver, too.

Maybe you ignore it, go back to work, and try everything you can to deny it. You even argue that the diagnosis may be wrong. Can’t a person just be forgetful? But you know deep down, something’s not right.

Maybe you’re the type to go straight into freak-out mode and tell everyone and anyone. You go on line, buy books, ask people for advice. You feel anxious and can’t sleep. You can’t help but to go to every awful place in your head.

At first, you have to feel whatever you need to feel. Give yourself permission to fall apart (however you define it) for at least a few days or weeks. You’ll get over it and move on faster if you don’t try to fight it. Be sure to find a good friend, a dear confidant to pour your heart out to.

The doctors didn’t  diagnose my mother’s Alzheimer’s. I did. I’m the one who began seeing the signs, who began asking the doctor questions. That may be true for your family as well. It’s not uncommon. Family members and close friends are the ones that notice the day-t0-day discrepancies–and many times, we’re the ones that make the doctor’s appointment and ask the questions. 

I didn’t rush out and yell it from the rooftop. I felt stunned and I wanted to preserve my mother’s dignity and I knew she wouldn’t want me to “talk behind her back.” But eventually, people needed to know. I was hesitant for her to go off with someone from church without them knowing, and I knew that her other doctors needed to know.

It was so hard to say it in front of my mother. She didn’t quite understand what “that word” meant and I soon realized I didn’t need to push that on her. She still felt like herself and it was important that I treat her the same. 

As a Caregiver, What Do I Do Next?

  • Ask your doctor about Alzheimer’s medications. It can make all the difference in the world. Your loved one can enjoy many more months if not years with far less symptoms with the proper medications. Check your insurance or Medicare policy and see what protocol you need to follow–and what they’ll cover and what they won’t.
  • Think short range and long range: What needs to change around the house? (Are they still living alone ? With you? Are they still driving? Do you need to start thinking about living arrangements?) Simplify their daily routine–declutter their living environment so they won’t feel overwhelmed. Be sure to monitor their medications and see if they can handle it on their own or will need daily supervision. Think about daily safety: showering, fall hazards, and cooking issues.
  • Give you and your loved one some time to adjust. No doubt, you’ll hit the web, buy books, join a support group and get lots of advice (including some horror stories) from anyone and everyone who has ever known anyone with Alzheimer’s or dementia. Give yourself time to digest all this, to figure out your own situation and not to over-react or under-react.
  • Don’t give into long-term fear or depression. Alzheimer’s is a tough disease, I won’t sugar-coat it–but it’s not all doom and gloom either. Your life will look much the same as it has the past few months and years. Hopefully, you’re already involved in your parent’s lives. You have a routine–you go to the library on Tuesday, the grocery store on Friday, and you enjoy brunch at a local restaurant on Sundays. Continue to do all those wonderful family activities. In fact, they’ll be even sweeter.

Sure, more changes will come, but slow down and take a breath. These changes come in increments and with each adjustment, you adapt. As scary as the “A” word is (Alzheimer’s), know that life can still be good, and there are lots of resources to help you on your journey.

June 18, 2009 at 11:56 pm 2 comments

How to Talk With Someone Who Has Alzheimer’s

Your spouse, your dad, your mom gets that dreaded diagnosis: Alzheimer’s.

You worry about your future, about your relationship, about all those conversations you meant to have. You don’t mean for it to, but things change. Maybe you, the primary caregiver adjusts–after all, you’re with them all the time–but you notice that neighbors and other family members act awkward. 

How Do You Talk with Someone Who Has Alzheimer’s?

Operative words: talk with, not talk to.

So many times we talk to each other. We don’t listen. There isn’t an exchange of ideas. No give and take. We want them to do something, to follow our directions, to agree with us. So we talk to people…and we all know how ineffective that is.   

Alzheimer’s makes life precious. As we notice that our loved one’s words are slipping–the forgetting of every day events, the inability to call that what-cha-ma-thingy a telephone–we begin to grieve our losses. We dread the day they will no longer recognize us, the day they slip into silence. But don’t get hung up on words.

Talking with someone is more than the banter of witty conversation. It’s chemistry. It’s memory. It’s play and thought and body language and all those wonderful ways we communicate–with our eyes, the way we comb our fingers through their hair, the nudge of the elbow as we sit together and people watch at the mall, and there’s nothing more beautiful than the way a couple “talks” with their eyes.

Yes, words will eventually diminish. Try to focus on all that you have. One moment of truly connecting with another human being is a rare and precious gift.

I can remember one very rough patch with my mother. She had been in the hospital for over a week and when she returned home she curled into a fetal position and no matter what I said or did I couldn’t get her to respond to me. Then one day, I got really close to her face, stroked her hair and just started sharing my heart in barely a whisper. She opened her eyes and looked right at me. And then she winked.

That is one of my most precious memories.

Tips for Talking With Someone Who Has Alzheimers:

  • Become aware of their body language and what it means. What do they do when they’re in pain? Wince? Squirm? Many UTI’s (urinary tract infections) go undetected in the elderly because they don’t know how to express what they’re feeling.  
  • Go ahead and make a family video. Get them sharing about their grandparents, about the war, about where they grew up–and do it now. Ask gentle questions and don’t focus on nailing down times and dates–they could feel stressed. Ask them how it made them feel when they came home from the war front. Isn’t that more important? You can Google a date, not a feeling.
  • Continue to talk and share even if they don’t respond back verbally. The brain can create a disconnect and be unable to form words, but that doesn’t mean that your voice isn’t soothing and grounding. It can be a constant that makes them feel safe. Again, watch carefully and see if you notice signs of muscles relaxing or tensing. What subjects are interesting and what subjects are irritating?
  • Include your elder at the dinner table. Nothing is better for the brain than to engage in a good convesation. The laughter, questions, and arguing about politics or the latest celebrity gossip is a great way to fire those neurons.
  • For some, the television becomes a non-entity. I’ve seen many care homes in which the television was on 24/7 but no one responded to it. Is the television for you–or them? Try to pay attention to how they react to the television. Do they enjoy the animal planet or old re-runs? Most people with Alzheimer’s can’t relate to the news, and it may even upset them.
  • On the other hand, music usually does get a response, especially when you first turn it on. Try the music of their youth–40s Big Band, 50s Rosemary Clooney and Frank Sinatra. Others find Bach’s melody a stress reliever. What causes their face to light up? Try a little light dancing–even wheel chairs turn–so see if that’s something they find enjoyable.
  • Don’t get into the question circle. Our loved ones with dementia and Alzheimer’s can cause us to lose our cool by asking a million and one questions. If they don’t remember where they live five minutes ago, they probably won’t remember it five minutes from now. Get them an ID bracelet (in case they get lost) and don’t fight that never-ending battle. Smile and change the subject.
  • Be okay with where you are–right now. I know how scary it all is. I know what you’re losing, but life can still be good. There’s nothing better than eating ice cream together. Just be present. Let this time, this experience be a part of the bigger story. If it’s a good day, then soak it in. Enjoy the afternoon sun. Enjoy the way their eyes light up when a cardinal flies by. If it’s a bad day, let it go. I used to imagine a giant strainer (like a spaghetti strainer)  and water washing all the hurt and frustration away.

Talking with those we love is so much more than bunch of words batting back and forth. It’s the privilege of sitting side-by-side. It’s the touch of a hand.

It’s an unexpected wink.

June 16, 2009 at 11:39 pm 1 comment

Hang Out With Dad: For Father’s Day and Every Day

It’s almost Father’s Day and children (and adult children) all around the world are asking, “What does Dad need?” Sometimees caregiving can wear us out and we forget to celebrate, but celebrations are good for everyone–and most celebrations involve cake–and that’s always good! Nothing is better than simply hanging out.

He probably doesn’t “need” a thing. He needs you, your time, your undivided attention for just a few minutes. He needs to know you still respect him and that you still need him, his wisdom, his experience.

So what do you get dad for Father’s Day?

Think outside the box. What would make his life easier? What would he never allow himself, think is too wasteful, or just hasn’t thought of?

Mentally walk yourself through his day.

Is there something broken that needs fixing? Will the window on his car not roll down? Is the weather stripping worn off the doors and windows? Did a favorite power tool finally bite the dust? Does he drool over an info-mercial gadget? Why not spoil him with a non-essential just-for-fun item.

What about entertainment? Here Are Some Great Dad Ideas:

  • What about an iPod shuffle or a Kindle? Download some great historical books–military books, the one about John Adams, they’re all on iTunes and can be downloaded electronically.
  • What about a brain fitness or other ways to engage thought and response. Why not make learning easy and fun? Studies have proven the best way to keep Alzheimer’s and dementia at bay is to learn and stay active.
  • What about a class at the local rec or senior center? Many communities offer everything from Tai Chi and minor car repair to learn how to play Bridge or selling your antiques on E-bay. A class is an ongoing gift and it’s even something you can do together.
  • How about an outing? When is the last time you went to a natural history museum or an aviation museum? No matter where you live, there’s something in driving distance that gives the two of you a day together.

Being thoughtful isn’t about spending money–it’s about giving it some thought, really knowing your dad–and taking the time to find something that will engage him. For someone to care about you enough to think about your needs, your wants, and even a surprise you’d never thought of–well now, that’s a gift.

June 11, 2009 at 7:37 pm Leave a comment

Caregiver, Are You Lonely? 3 Keys to Making New Friends

As adults, it’s embarrassing to admit we get lonely. We think that it makes us sound like a 14 year old, but loneliness strikes at any age and at any time of life–and we’re especially vulnerable when we’re caregiving.

Here’s an excerpt I wrote about feeling lonely (from Mothering Mother)

Losing Me and the One Year Mark

I dash out the door, for a quick run to the pharmacy, hit with a crisp November day. It’s clear and bright and there’s a chill in the air. I go back in and grab my blue-jean jacket. I drive through my neighborhood and notice a guy out for a stroll with two dogs, each pulling its leash in different directions. A group of women in polar fleece sleeveless vests push strollers and are walking as fast as they’re talking. I don’t even know them. A group of friends to walk with in my own neighborhood, how nice.

The leaves are cascading down on a stiff breeze, a gust of golden leaves twirls to the ground. It looks as if it’s snowing gold. I clip past house after house, my eyes taking in every change. How long have I been in that house? Suddenly, I wish I could meet a friend for lunch but the last two years have left me little time for chicken salad and chit-chat.

I’ve lost something this last year. I’ve shrunk; I get out less and less and I’ve forgotten how bustling the world is. When I see workmen in vans, telephone installers on the side of the road, or children with their moms in SUVs, I realize that as my mother’s Alzheimer’s increases, I’m fighting a slow sadness. This is a season, I tell myself. It won’t last forever.

***

Friendships are vital. The Today Show featured a segment on best friends today, and they stated that people who enjoy close friendships are healthier and enjoy a greater sense of self-worth. It’s such a source of strength to know you can call up a good friend to vent, to ask make yourself accountable, or for a good belly laugh about something no one else would get.

3 Keys to Making New Friends While Caregiving:

  • Be friendly to your neighbors. I know that most of us barely wave at our neighbors, but why not break the norm and actually knock on their door? You need them, so you need to make the effort. Sure, the first time you  do it you may get a strange look, but people warm up quickly–especially if there are warm cookies involved. (I”m not saying make them from scratch, just pick up some pre-made batter in your dairy case).
  • Join a caregiver’s support group. Who better to understand what you’re going through than a fellow caregiver! Exchange emails or phone numbers, sit next to someone and start up a conversation. Who knows? You might even be able to start your own caregiving co-op and get together with your care buddies. (Kind of like a play-date that kids have)
  • Who needs new friends? Call up an old one. Reconnect. Join Classmates.com or Facebookand look up some old high school or college buddies. It can actually be fun to reconnect, compare then and now pics, catch up and who married who—and since it’s online. It doesn’t take the effort to get dressed and leave the house but you still get the benefits of connection.

Yes, at times caregiving can get a bit lonely, but I found that my friends–old and new–really do care about me and their love and support brightens even the toughest days.

June 10, 2009 at 12:27 am 1 comment

How to Get Through a Bad Caregiving Day

When I mean a bad caregiving day, I mean a  baaaad caregiving day.

For everyone, that’s different.

It might be having a fight with your loved one–over treatment, prognosis, or just plain old stubbornness.

It might include a fall, the paramedics, or is it that your mom or dad getting physically and verbally abusive with you due to Alzheimer’s or dementia?

It may be what I faced–that my mom had utterly trashed her room in the middle of the night. She had defecated on herself, on the carpet, broken something valuable and then screamed at me when I tried to help her.

It might be that the rest of your life is falling apart–a valued relationship, the loss of a job due to the responsibilities that come with caregiving, or that you got bad news at the doctor’s.

How do you get through?

First of all, it takes a deep, deep resolve that you must care for your loved one.

You know that you have to figure out how to do this–that nothing, not even the worst of times will dissuade you. Now, this doesn’t mean that you don’;t get help or that you don’t have to consider a care place for your loved one–you’re still a good caregiver/daughter/son/spouse and good caregivers know when they need to “share the care.”

The other “weapons” that keep us going are varied and may include:

  • Stepping outside for some fresh air–especially when the moment is heated.
  • The use of cold water splashed on your face–popping a diet coke or a hunk of dark chocolate.
  • Going to the car for a great big screaming session. Nothing is more cleansing that getting the hurt and venom out.
  • Caring from an emotional distance. It’s sometimes necessary to step back–emotionally. Clean up the mess. Apologize. Make the calls and deal with the medical issues at hand, but do so by creating a safe distance. You are still a loving, committed person–but you don’t have to be all lovey-dovey all the time. And you don’t have to let them continue to push your buttons. Care in a calm, purposeful manner–but save your heart for you.
  • Fall into the “arms” of others who love you. Got a husband or a wife? Take a shower together. Cry in the shower. Hand them some lotion and ask for a rub down. Got a best friend? Go get a big long hug. Have a glass of wine or two. Vent. Laugh, and appreciate the fact that others care about you.
  • Get out. After a particularly hard day, it’s time to get out and see that there’s a great big wonderful world out there. Run to store nearby and get some supplies. Make a pot garden. Buy one pot, some dirt and a few flowers. It’s amazing how therapeutic dirt really is. Or get some yarn and a how-to-knit book. Yes, you have to go back home, but go back with a renewed sense of self-nurturing.
  • Complain! Hey, you have the right to! But do so with style–can you crack a joke? Even a rather scandalous, sarcastic, slightly irreverent joke about the whole thing? Go for it! It helps so much to turn this “mess” into something less scary and laughing hysterically at something that at the time didn’t seem that funny is turning the light on in the closet of our lives and seeing that big hairy monster is really about the size of a mouse.

You’re going to have them. Horrible, horrendous days.

The question is, do you have a plan?

June 4, 2009 at 9:49 pm 4 comments

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Hi, I'm Carol O'Dell. This blog will include stories and lessons I've learned while caring for my mom, and now as I speak to caregivers around the country. I hope to offer suggestions, ideas and insights that will help others.

While this blog is supported by Dakim Brain Fitness, I’m not blogging to promote the Dakim company or products. Instead, I’m writing about how caring and being cared for affects your life and your family. My hope is that this blog gives you a place to learn, reflect, gain new perspective to make it another day.

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