Archive for November, 2009

“My Spouse Doesn’t Know Who I Am Anymore.” How Alzheimer’s Impacts Your Relationships

It’s a tough day when your spouse or parent forgets who you are due to dementia or Alzheimer’s. I remember the first time my mother called me “Hey, little girl.” It sounded kind of cute, kind of condescending…and then I realized it was because she wasn’t sure who I was. I would remind her and a minute later she’d look at me with a blank expression. That was a tough time in my life–that no amount of caregiving, love, and attention could bring back my mother’s memory.

I didn’t talk about it for awhile. I didn’t share it with my husband or other family members. It hurt too much to say out loud. I asked my family not to celebrate my 40th birthday. My mother was living with us and I just couldn’t see her looking across from me–her face in the glow of birthday candles–and for me to be a stranger.

I still had to care for my mom. It didn’t matter: The hurt, the disappointment, the grief–it didn’t matter. I had to keep going. I had pills to cut, food to prepare, doctor appointments to take her to, sheets to wash. I had to go on. And that’s what I did. I keep doing what I had to do.

And then something shifted. In the midst of my caregiving duties, I remembered I was her daughter. I remembered that. I could remember. And I choose to accept that role. Even if she couldn’t remember, I would. I was already making notes about our days that would later become my book, Mothering Mother. I wanted to capture “us.” I wanted to remember, even the hard parts.

It took some time, working through the grief, accepting where we were. Yes, Alzheimer’s takes something from you, many precious things from you. It affects your relationship, no doubt about that. But what it can’t take from you–is your resolve. That’s who you really are.

November 28, 2009 at 12:25 am 2 comments

Caregiver, Are You Too Tired to Enjoy Thanksgiving? Find Your Grateful Heart

Thanksgiving weekend is a time to gather our loved ones, eat a sumptuous meal, maybe shop a little or even take in a movie. Sounds like fun, but for a caregiver this time of year can also mean more work–and a disruption to your loved one’s schedule. Caregiving can feel like you’re juggling ten plates at one time. Any time anyone throws in an extra plate in the mix might mean it all comes crashing down. It’s easy to feel overwhelmed, overworked, and under appreciated. It might be time to simplify a few things.

Choose one thing to be thankful for. You don’t have to go for something big, and if you’re feeling rather curmudgeonly, it’s okay. For me, being grateful can come early in the morning. When everything else goes wonky I can always know that I get to start my day with morning coffee. I don’t want to be made to feel grateful for everything and everybody, because sometimes I’m not. For coffee, I’m always grateful. Gratitude should be simple. I have a favorite coffee, and I try my best not to ever run out. I’d rather run out of gas or toilet paper before I run out of my coffee! Sipping that first cup and taking in that deep, nutty aroma is calibrates my day.

The other component to Thanksgiving is–giving. Yes, you give a lot, but who gives to you? Do you have a neighbor who always waves? A cousin who calls every holiday–just to chat? A faithful old dog who’s been your companion for years? Look around at who gives to you. Don’t worry about being patted on the back. That will come in time. It’s more important that you recognize that many people support you–in big–and little ways.

If you’re in the midst of some major caregiving this year–if your loved one has been ill, recovering from surgery, or has entered hospice, then this might not be the year to kill yourself on a big dinner or a fancy table. Scale back. Buy a pre-made meal from a catering company or even parts of it from your local grocery store. Decide to be together this holiday. Who cares if it’s a store-made apple pie, it still tastes good, and it probably tastes better if you didn’t have to stand up for hours making it.

Grab a cup of cider, egg nog, or coffee, get a piece of pie and actually sit with your spouse, your mom, your dad. Watch a video, play cards, talk, or even take a nap. Being together, really being present is the best gift you can give.

Naps. Now that’s something to be grateful for.

November 25, 2009 at 1:18 am 1 comment

What’s Sundowning? Sundown Syndome, Symptoms and Solutions for Caregivers

Does your spouse or elder parent doze off and on all day and then come six o’ clock, they seem to all of a sudden become alert and fussy? And does it only get worse as the night goes on? That’s sundown syndrome--it’s also referred to sundowning). When the sun goes down, their energy level goes up. It’s common with elders and those with dementia and Alzheimer’s and for caregivers, it’s exhausting.

What are common sundown syndrome symptoms? 

Sundown Syndrome symptoms include: Confusion, anxiety, agitation, or disorientation (common with Alzheimer’s in general)  that seem to be heightened after dusk and into the evening hours.  The episodes may last a few hours or throughout the night.

Their level of agitation can be mild: Asking repeated questions, pacing, talking, wanting to leave, not wanting to go to bed, getting up and wandering, to name a few.

Their level of agitation can be high: Anxiety, seeing things that aren’t there, yelling, crying, destroying their room, escaping, violent behavior when trying to be controlled, and an inability to calm down.

Some of the Causes of Sundowning Are:

Medication interaction, food/glucose levels dips or spikes, macular degeneration (which would cause vision issues which in turn might scare or upset them), hallucinations (sometimes due to medication or conditions such as Lewy Body), anxiety and other mental illnesses that may be an underlying condition, inability to describe or realize they’re in pain, which comes out as agitation (UTI’s are common, headaches, arthritis, etc.).

Another factor that’s been studied is that our elders and those with chronic illnesses don’t tend to get out of the house and therefore they’re not exposed to enough sunlight, or their body isn’t absorbing vitamin D properly. They may need sunlight therapy.  Try a  full-spectrum fluorescent lamp (between 2,500 and 5,000 lux) for a couple of hours in the morning is now showing remarkable improvement. Place it near them while they’re watching tv or other sedentary activity).

Ways Caregivers Can Help Elevate Sundowning Symptoms:

  • First, observe sundowning in action. Keep a journal for a week. Note what time of day it occurs, how long it lasts. Note whether it happens before or after medication, before or after dinner. Note if the house is noisy (if you’re a sandwich generationer and you have a multi-generational household and kids are coming home from school, dinnertime is loud and noisy, this may factor in). Also note on what days it’s better or worse and what they did that morning–a walk or errands.
  • Note how your loved one is acting out. Are they anxious? Angry? Fidgety? Need to walk or pace? Talk? Go through drawers? Think the house is being robbed?
  • After you’ve taken notes, then try to connect the dots. Is it medication related? If they’re fidgety then check out pain triggers. You may want to test them for a UTI (urinary tract information)
  • Have you taken them for a walk? Paid them enough attention? Can the not wait for dinner and need  snack?
  • Consider the two of you practicing some form of meditation such as yoga, tai chi, prayer, classical music, deep breathing. Create a bedtime ritual that’s soothing.

You may have to rearrange your life because I can’t promise you that you can “cure” sundowning. My mom had it and yes, it was rough. We’d have good nights, and not so good nights. Do all you can to pay attention to the symptoms, find solutions, and make your life as manageable as possible. Sundowning is like having a colicky baby. They don’t mean to be exhausting and frustrating, but they are. It’s our job as caregivers and family member to love them anyway.

November 19, 2009 at 9:33 pm Leave a comment

3 Tips to Make Caregiving Easy at Thanksgiving

I’ve cooked 30 Thanksgiving meals thirty years in a row. That’s a lot of turkey. Even when I was caregiving my mom, the turkey made its way into the oven and onto our plates, but there were a few holiday meals I where I was so tired I didn’t even feel like chewing. Why? Because I was trying to do too much. Caring for a mom who has Parkinson’s and Alzheimer’s did teach me a thing or two–I had to choose what I was going to focus on–and what I could do without.

Maybe you’re the designated caregiver and all the family members are gathering at your house for Thanksgiving because it’s easier since your parents are already with you. It’s time to make some plans.

3 Tips to Easy Caregiving at Thanksgiving:

  • Divvy up the workload. Send out an email or make a few calls. List the menu and other “chores” that have to get done such as setting the table, washing the dishes, putting the leftovers in containers, making appetizers, coffee and dessert, cleaning the guest bathroom…don’t leave out a thing. Ask for help. Give them choices, and accept their help. Even if you prefer your pecan pie recipe over theirs, let them make theirs–this isn’t the time to quibble.
  • Lower Your Standards. What can be done easier? How about plastic cups and paper plates? If no one wants to wash the china by hand, then nix the china. If you don’t feel like washing and cooking a 25 pound turkey, then order one from a local restaurant or catering company. Yes, it’ll cost more, but not that much more when you factor in the work that goes into cooking such a mammoth bird.
  • Keep What Matters Most. Ask yourself what Thanksgiving means for you–and for your loved ones. Do you have a fondness for sweet potato souffle? Do you love the all day football? Do you like going around the table and each one saying what they’re most thankful for? Keep the traditions that are dear to you, but begin to let go of the “to-do’s” that exhaust you.

The hardest part of the holidays for caregivers? Not overdoing. It’s easy to fall into host mode. We try to please our family by creating the perfect atmosphere, but there’s a price to pay. Notching Thanksgiving down a bit can still allow you to incorporate the things you love–and make it manageable.

 

November 17, 2009 at 7:45 pm 2 comments

Should Mom Move in With You? Questions for Family Caregivers and Multi-Generational Households

It’s a big decision–whether your mom (or dad) should move in with you. You’ve probably been thinking about it for months, if not years. You’re probably already caregiving in many ways. You’re a card-carrying member of the sandwich generation–you can juggle as many balls as a circus clown. But you have concerns about living together. Once she’s moved in, there’s no turning back.

What if we fight all the time?

What if she tries to mother my children?

What if they like my mom better than me?

What if she monopolizes all of my time?

What if my dad starts barking out orders?

What if dad doesn’t adjust and gets depressed?

What if it affects my marriage negatively?

What if I can’t do it all?

Those are just some of the questions that might be swarming around your head.

How do you decide?

For the most part, your mom or dad becoming a part of your household is just the next natural step. Maybe your dad spends the weekends and the holidays already. Maybe your mom has been making excuses to stay over more and more. It may be  time because of financial reasons, the beginnings of dementia, or maybe this last bout of cancer has left your dad weak–and you want more time together. 

In some ways, living together is easier than trying to maintain two households. In other ways, there is an adjustment period.

Five Ways to Create a Smooth Transition to Becoming a Multi-Generational Household:

  • Sit together and have an honest talk about living together–expectations, assumptions, concerns. Keep it light, laugh about it, but be brave and bring up those uncomfortable topics so you can work through them early.
  • Commit to each other that no matter what situation comes up, you’ll work through it together. There’s a reason why we make those vows when we get married–because we might need to be reminded of that promise to stick together n0-matter-what when the ca-ca hits the fan!
  • Give each other permission to get mad, have a fight, make up, state you need some privacy, take time off, and on some days, be a royal B (you know what I mean). All of us have off days and when we do, we just need to announce it and everyone else needs to back far away and give us some room.
  • Decide important subjects like if you’re going to take over finances, who’s going to pack, how much you stuff you can bring with you, and other new territories up front. Most people have issues because they’ve made assumptions and haven’t cleared the air.
  • Admit going in (both of you) that you may need outside assistance. As time goes on, as your mom or dad continue to age, as diseases progress, you can’t do it all. You just can’t–not and be a daughter, a wife, a mother, and keep your health and your sanity. It’s easy to assume that because you’re living under one roof that you should take care of all of a person’s needs. That’s not humanly possible. Find community resources, hire part-time elder-care help, and be sure to get some respite care. You need a break–from each other!

Most people go through a romantic phase at the beginning of the transition–a time when everyone’s excited and happy–and then you have your first big fight or a problem arises you hadn’t planned for. Don’t let this throw you or make you think you made the wrong decision. It’s just the first of many changes–but it’s worth it. There’s something comforting about having everyone close to you under one roof–when the time is right.

November 10, 2009 at 7:30 pm 2 comments

Is Your Parent’s Clutter a Hazard?

The holidays are a time we visit home. Are you dreading the fights about the clutter? Do you walk into the front door–and as far as you can see–there’s not one clear surface? Do you feel claustrophobic and worry about elder mom (or dad’s) safety? As caregivers and family members, we grapple with what to say or do to help our loved ones. When is it just personal preference–and when is it dangerous?

There’s a great new book out titled, “The Boomer Burden.” It delves into the subject of what it’s like to inherit all our parent’s stuff. How do we know what to keep and what to pitch? Should we really hold onto that ball of aluminum foil–and why do they balk when we suggest that they don’t need to keep every birthday or Christmas card they’ve ever received? Knowing what to keep and what to toss is a big caregiver bone of contention.

Sometimes, you have to make an executive decision. You have to step in and deal with the mess. Be sure to pick this battle with care. Hurt feelings can cause them to stick out a defiant chin and refuse to get rid of anything. Before you get all bossy, consider the following:

When is Clutter a Hazard?

  • When there are items on or near the stove or other cooking/heating appliances that could catch fire. They can say all day they don’t cook, but stoves get turned on. Nothing should be that close. This isn’t an option. Deal with it fast.
  • When there’s no clear path to the exits. No exit should be blocked. You never know which door you might need. No boxes or furniture should block a door. I know many elders are so afraid of break-ins they block or cover doors, but the fact is, the house is much more likely to catch fire and exits are crucial for firefighters. Create 3-foot paths.
  • When important and needed items can’t be found. Phones, medications, important numbers and papers, canes and other assistance items. If their eyesight isn’t keen and they tend to live in a dark home, it would be easy to mistake the wrong medication, or simply give up trying to find them. Make these items clearly seen. Use baskets, hooks, anything that makes them obvious.
  • When you start hearing excuse after excuse. They forgot their appointment. They don’t like their new medication. They didn’t hear the doorbell for the physical therapist. The neighbor hit their mailbox. Excuses are ways to avoid that something’s not right. Dementia, clutter, other factors may play into why important dates or items are falling through the cracks. Don’t fall for it. Start keeping track. Pay attention–it could give you the clues you need to figure out what’s really going on.

This is going to take your time and energy. It isn’t going to be easy and yes, it’s likely your mom or dad is going to fight you on much of this. Do it anyway. Get plastic bins and save anything you believe is really important, but get your parent’s house safe as soon as you can. Try to get them on board. Make it fun. Put on some music. Bribe them with lunch out, a new paint color, something, anything they can look forward to. Don’t discuss every item. It’s not up for debate. Move quickly and don’t let a pouty look stop you.

Also realize it’s only a matter of time until you’re going to have to look at other living arrangements. This may buy you a bit of time. Use it wisely–begin to research and ask yourself what will work–for everyone.

 

 

November 6, 2009 at 1:17 am 2 comments

The Power of Language: Poetry, Prayer, Songs and Alzheimer’s

When my mom was having a rough day, I’d go to her bedside table and pull out her tattered Bible, turn to the Psalms and would recite the words of David. Soon, my mom would stop fidgeting, grow calm, fold her hands and listen. Her lips would begin to move, “He makes me lie down in green pastures. He restores my soul.” Even after my mother had forgotten my name and her name, she remembered these words of comfort. As she changed, I changed. I was no longer her caregiver, I was her daughter–and friend.

Why? Language has power.  Words we learned long ago become a part of us. They settle deep in our brains and become a part of us on a cellular level. Long after my mother forgot my name and her own name, she could recite passages of scripture, lines of songs, and snippets of nursery rhyme. The connection with words, their lyricism, their syntax, their meaning comforted her in ways I couldn’t. Those with Alzheimer’s and other forms of dementia respond amazingly to the power of language. It’s good for the brain and even better for the heart.

Nursery rhymes. Childhood songs. Pop hits of our teens. Our wedding dance. Songs of our faith. The Torah. The Bible. Hindi Texts. Shakespeare. Rumi. Dr. Seuss. What would reach your loved one? Look back over their lives. Try something from each decade. Ask friends and relatives–what poem did Mom (or Dad) always love? What song did she like to dance to? What song did your dad sing you to sleep by?

The power is in the flow. Alliteration of vowels and consonants. Connections that stir our memories, our past. Even if it’s just a feeling, something they can no longer put into words, the power is still there. Who can resist a good Jitterbug? Who can not swoon at Perry Como’s Moon River?

One beautiful movie that focuses on this theme is “In Her Shoes.” A wayward granddaughter comes to live at her grandmother’s retirement community. She meets a dying professor who introduces this young woman to the beautiful and moving poetry of e.e.Cummings. It changes her. It gives her hope and direction. The words coil around her heart–and changes her.

Caregiving is so much more than cutting pills and changing soiled sheets. Take the time to pull out a book, download a song, and share a moment.

 

November 3, 2009 at 8:36 pm Leave a comment


This Blog

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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