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Archive for the ‘adult day cares’ Category

There may be 50 million caregivers in the United States, but you feel all alone. You’re stuck at home, going to and from a nursing home or care facility, you’re curled up on that oh so not-comfy orange final chair next to your loved one in a hospital for weeks–isolated, scared, cut off from the life you once lived–and you wonder how long you can keep doing it.

The loneliness and isoluation that comes with caregiving can feel like the last crippling blow. Caregiving takes otherwise outgoing, fun, professional, engaged people and can make you feel like you’ve been put in the proverbial time-out chair with your nose to the corner of life.

Even if you could get out–where would you go? You can forget how to have fun, how to interact with “normal” people, too exhausted to get dressed and meet a friend for lunch, or too concerned to make your own medical appointments–what would you do if they actually found something?

Believe it or not, there’s more caregiving support out there than you probably realize–in your own community, and online.

Where can you go to find caregiving support?

  •  Online caregiving sites, blogs and forums.
  • Check out Caring.com’s new program for those with loved one’s struggling Alzheimer’s.  “Steps and Stages.” is s a great way to plan for your loved one’s care, know what’s coming head, and tap into local community support.
  • Join a forum focused on caregiving needs. You’ll find new friends who are going through just what you are going through–you can vent, get ideas, brainstorm–and just hang out. Some great online caregiving forums can be found at the Alzheimer’s Association site. Also check out Davita, iVillage, Elder-care, and Well-Spouse–each offering

Check out your own community caregiving support.

Go online or make a few calls to the Council on Aging, your senior community center, check with your loved one’s doctor, adult day cares, local care facilities have a list, elder affairs.org and make disease-specific organizations offer local caregiving support groups and activities. Start asking, taking notes, and finding what works for you.

Create Your Own Caregiving Tribe Support

Friends, neighbors, your clergy, your hair dresser, your cousin…a complete stranger you meet on a walk. Share your story. Share where you are. Don’t try to sugar-coat it. Don’t isolate yourself by your own doing–because you feel out of step with the rest of the world. Force yourself to get out, to talk, to share, and to listen.

Keep knocking until someone answers.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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You are not alone. Being a working caregiver is what many families have to do. They worry, they hire home health care, they utilize adult day care, they take time off for doctor visits and emergencies…but they have to continue working. Today’s economy makes having a job a blessing, not to mention a downright necessity. If you have one, by all means, try to keep it!

But most working caregivers experience guilt and worry by the bucket-fulls. Every day. They call home a dozen times. They use all their vacation timea and personal days–not for themselves, not for a va-cay to Hawaii, but caring for their loved ones. They worry about losing their jobs. They worked hard to get to the top of the hill, to become the manager, the lead person on the team–and now it’s all jeopardized. Boomers and sandwich genearation-ers are feeling it on all sides.

How to Juggle Work and Caregiving:

  • Decide if you want to let your employment know about your caregiving “issues.” Eventually, you’ll have to–but if you’re concerned that it could cause problems, don’t blab too soon. Get out that old HR book or go online to your company’s site and review their family leave and family emergency policies. When the time comes, choose your words wisely and come from a place of power, not panic.
  • Organization and Preparation are your allies. It may feel like every second of every day is planned to the enth degree, but it has to be. Sorting those pills once a week can save early morning hassles. Double booking doctor appointments can mean taking less days off. Tell them up front you don’t have time for follow-ups and make sure you leave the office with those hard to get prescriptions. Also plan to get your hair done and your mammogram.
  • Put You on the List: While you’re planning your week, put yourself on the list. Go ahead and write it down: shave your legs, go to church on Sunday, meet with your girlfriends for your birthday–even if it means arranging for a sitter for mom. If you don’t, resentment will rise up like an angry pit bull and go for your jugular. You don’t have to be a martyr. Take a night off–and plan for it or it’ll never happen.
  • Learn to compartmentalize:When you’re at work, don’t call home every half hour. If you have good help, then trust they’ll call you if they need you. Put up that mental boundry and pour yourself into your work. It’s good for your brain to get engaged and work on a challenge or problem to solve. And when you’re home, put the briefcase away. Eat dinner together. Talk, go for an after dinner stroll or soak your feet in matching foot massages. The point is, be present–whereever the present is.
  • When the Time Comes, Take Time Off: You might be caregiving for a long time, so don’t panic at every turn–but do take time off when it’s time. If your loved one is dying, has late stage cancer, or is having open heart surgery, then yes, you need to take time off. Don’t hide behind your work and miss these important life events. You don’t want to regret that your loved one left this world without you slowing down, getting off the rat-race treadmill and really being present–for you–and for them.

When my mother’s Parkinson’s and Alzheimer’s got so bad that I knew she needed full-time care (24/7), I quit my position as director of a private school in Atlanta. I had started that school, nurtured it, watched it grow, and gained many friends along the way. For years, I had juggled my mom’s care, and I’m glad I did. I gave her a few more years in her own home, in own community.

The change was hard on all of us (my mom, me, my family), and yes, it was tough to let go of my work–and then it was a tough 2 plus years caring for my mother and eventually, she passed away in our home. But I know I did the right thing. I wouldn’t be here today if I hadn’t made these choices. We never know where life may take us. 

There’s no way around it, you’re going to be stressed. You’re going to feel like there’s never enough to go around, but working can also save your life–and your head. Being a working caregiver can help put things in perspective. It can add a refreshing purpose to your life and remind you that you’re good at something and that the bustle of life is a good thing.

Let’s face it, if you have to work and care give, then give it your all and choose to be grateful–for both. Why? Because the alternative is to just be miserable, and that’s not such a hot alternative.

~Carol O’Dell

Mothering Mother

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If you haven’t seen Pixar’s UP, get in the car and head to the movies. I’m not kidding. That’s an order:) And if you are a part of or direct a care home, an adult day care or a senior community center, load them all in the van and take them to see UP. You won’t regret it.

If you’ve been reading my blog, you know I don’t use it as a way to endorse or promote anything I don’t passionately believe in–so I hope you’ll trust me on this.

And it’s absolutely perfect for Fathers Day! 
If you’re a caregiver, what a perfect outing and take your loved one. Sandwich Generation? Take everybody to the movies!

Oh, and take a box of tissues–and be ready to laugh, cry, smile, and leave feeling completely rejuvenated.

Yes, it’s a cartoon, but I’m not sure Pixar’s great films (Monster’s Inc. Toy Story, Finding Nemo, Wall E) can be placed in the category with Sponge Bob (sorry, Bob).

What’s UP about? I’m not telling. I will let you know what you could pick up from the commercials–it’s about a seemingly grumpy old man who has longed for adventure all his life–and about a young boy who so needs a friend. It’s much much more than that and old and young alike will identify with both these characters, their wants, needs and fears. It’s about dreams and adventures and how we find–and lose–and find our way through life.

Oh, and if you’re a dog lover, Doug the dog is adorable! He’s my dog, Rupert on the big screen–lovable, daffy, and most of all, loyal.

It’s about time that our elders were given their on-screen debut and delivered as the complex, meaty, powerful protagonists they are. Yes, it’s super-hero status in the best sense of the word–not because he can fly or walk through walls–but because he still has something amazing to offer the world–his time, love, and experience. It’s about time that the media portrays our elders with the respect they so deserve.

No, Pixar’s not paying (but feel free). I don’t know anyone who hasn’t been deeply touched. Take your dads. Take your moms. Take your aunts, uncles, kids, grandkids, and neighbors. UP will warm your heart, unhinge your tear ducts, and boost your heart.

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For many of us, caregiving a spouse is in our future. We like to not think about it, or at least imagine that it’s a long, long time from now. For many, it’s a daily reality.

According to the Family Caregiving Alliance, there is a much higher likelihood of receiving care from a spouse than from an adult child. 
Nearly one-quarter (22%) of caregivers who are themselves 65+ are caring for a spouse. Personally, I think it’s higher than that.
And it’s not all the women who are doing the caregiving. 
I know lots of men who are caring for their wives through cancer, MS, heart disease and dementia.
 These men have my full respect. The ones I’ve met are kind, thoughtful, and are trying to very hard to give their wives the best of care. I’m sure there are many who are not like this, but I do have to pay homage to the ones who are.

So why does caregiving my spouse scare the bejezus out of me and most everybody else?

 Because my husband is my strength, my rock, the person I can rail against, nag, complain about–but would never want to do without.

Even when he gets the flu, I’m a wreck. I’m projecting into the future, seeing him years from now, weak, and me trying to care for him.

He’s 9 inches taller than me and about 60 pounds heavier than me, and the few times he’s had minor surgery, I’ve seen how difficult it is.

But that’s not it.  We’d find a way to make it work.

It’s not that it’ll be hard, exhausting, or challenging. I cared for my mom through Parkinson’s and Alzheimer’s. I’m no wimp.

So just why is it so hard to care give a spouse?

I’ll just vent and you pick the one that best fits you:

(some of them don’t paint me in a good light, but I’m being a guinea pig here so that we can all identify with our less than admirable selves)

I don’t want to become his “”mother.” (By that, I mean I want to remain his wife, lover, and friend).

I don’t want to be stuck by his side 24/7–I’m very independent.

I don’t want him to be weak–for me, or him. He’ll hate that.

If you’re sick, then I have to be well? What if I get sick?

Who am I now? How do I define myself?

I don’t want him to order me around all the time–and he will. I don’t want to fight all the time.

I don’t want to cry all the time either.

I don’t want him saying “thank you” a gazillion times a day and feeling guilty.

I don’t want it to be over.

I don’t want to watch him /her  slowly die.

I don’t think I can manage our life and home without him.

I don’t want the fun times to be over–the trips, the banter, the ordinary days.

I don’t want our world to grow small, isolated, and lonely.

I don’t want our world to revolve around doctors and medicine.

I don’t want that time to come when I can’t make him smile.

****

This just starts the list. No one wants any of these things. But until we can admit them, I’m not sure we can move on.

I know that the next step is to take this list and turn it into a WANT list, find the good in whatever life throws me.

I was at a talk for Community Hospice on Saturday at the Mary Singleton Senior Center in Jacksonville, Florida and I told this crazy story about a time when my husband passed out at an amusement park. He said he was dizzy, grabbed his neck and fell stiff as a board onto the gravel road.

I was freaked. I thought he died. And you want to know that first fleeting thought?
“You…(I’ll leave out the colorful phrase), you have died–died and left me to raise three kids? Alone?

I then began to pound on his chest (not CPR, even though I was trained) and yell in his face “Help!” What? As if HE could help us? I did it over and over.

Thank goodness, he started to come to, and then I had another thought…”He’s a narcoleptic! He’s going to be conking out all the time!”

I swear, I followed him, walking three feet behind him like some antiquated Japanese woman (did they ever really do that???) for the next two years.

As if I could catch him.

***

That true, but embarrassing example is a light hearted version of what wives and husbands feel everywhere.

Deep inside we’re all screaming, “Don’t leave me here without you!”

Spousal caregiving kicks up a lot of emotions. Some sweet and sentimental, some down right  self-serving. 

The only thing I can offer is:

  • Talk, talk often. Get used to this conversation so that if something awful happens, you’ll have practiced. Kid around, make jokes, talk about the “what ifs.” Nothing is as scary as an unsaid fear.
  • Tell your loved ones how you want to be cared for. Please, for your family and spouse, sign a living will. They are so, so easy. Go to The Five Wishes and request one or print one out. Don’t make your family guess and then fight or feel guilty because they didn’t know what you wanted–or they all heard something different.
  • Have health insurance, life insurance and long term disability or care insurance. I know the economy is tough, but try to keep these, or seek a governmental equivalent (for health insurance if you qualify). Murphy (as in Murphy’s Law) likes to strike the second you’re unprotected, and caregiving is tough enough without adding the stress of finances.  

If You’re Already Caregiving:

  • Be present. Each day is precious. Even if it’s hard, chaotic, or near the end, it’s a privilege.
  • Keep your blinders on when you need to. There’s a time to think about the future, and a time when this moment, this hour, is all you can deal with. When times get rough, make your life simple, quiet, and don’t go to all those scary places. It’s not the time.
  • Never stop being a spouse. I know that caregiving is a lot of “doing.” Meds, baths, physical therapy, doctor appointments, home health aids…after a while you can forget you’re a married couple. Never ever forget that this is the person you said ” I do” with. At times we have to force ourselves to step out of “Nurse Nightingale (or Nurse Ratchett’s) position and step back into that role that no one, no one but you can fulfill. You’re his sweetheart. You’re her sweetheart.
  • Give  up being perfect. It’s exhausting and impossible. It’s the quirks, the foibles, and the fights that define us. Do the best you can. Forgive yourself when you lose your temper, forget something important, or just can’t do it all. Look yourself in the mirror each night and say out loud, “You did well today. I’m proud of you.”
  • Trust that as grueling and dark as it is, you will find the strength, you will find your way through spousal caregiving. Somehow.

***

At the end of my talk, the very sweet woman had me sign her book. She could hardly talk, she was crying so. Her husband of 54 years has Alzheimer’s. I held her and cried too. I try to give tips and I try to encourage, but I can never convey how deeply I care. Your stories touch my heart, and sometimes, all the advice in the world won’t be enough. 

Caregiving a spouse is so hard. Why? Simple. Because we love them.

~Carol O’Dell, author of Mothering Mother

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New Year’s is a time of hope. Wipe the slate clean. Begin again.

I was on a walk the other day, thinking about resolutions. Thinking about the word, resolve.

To re-solve. To solve something again–that it was once solved. So a resolution is a re-solution.

That means that once upon a time it wasn’t a problem.

That’s true.

We weren’t always overweight. We didn’t always drink too much, smoke, spend to much, or see our loved one’s too little. 

So, a resolution is just getting back to that former state.

Think back, when was it that you weren’t overweight?

Perhaps your teens? Before kids? For some of us, we have to think back even younger.

But there was probably a time. You didn’t think about food all the time. You rode your bike. Played little league.

Your body remembers this. In sports, they call this muscle memory. If your body (or mind) has ever done it once, it remembers–and can do it again.

This works for more than just weight.

So I thought about it–I used to spend copious hours on my bike as a kid. I can bike now. I used  to sing for the heck of it. I can sing in my car. I used to draw. I think I’ll go outside and draw that live oak tree in my back yard.

Sometimes we make things so big and so hard. Simple pleasures are deeply satisfying.

We buy too much, eat too much, smoke and gossip because we’re trying to fill a hole.

 We have to (at least I know I have to, I have no right to speak for anyone else) learn how to be with ourselves–and be content. 

To be content is to have content. (Sorry, I’m a word-nerd)

To have content is to have substance–something meaningful that fills up space.
I love the word contentment. To be deep in joy–to belong–to not want to be anywhere else or with anyone else.

 

According to GoalGuy.com, here are the top ten resolutions: (every site I researched had a similar list, so it’s pretty much a given)

 

Top Ten New Year Resolutions

 

                1. Lose Weight and Get in Better Physical Shape

2. Stick to a Budget

3. Debt Reduction

4. Enjoy More Quality Time with Family & Friends

5. Find My Soul Mate

6. Quit Smoking

7. Find a Better Job

8. Learn Something New

9. Volunteer and Help Others

10. Get Organized

This list tells me we’re all pretty much alike. There’s things we need to stop doing–other things we need to start. Push and Pull.

 

So, just for fun, I propose a Top Ten Caregiver’s Resolution List:

1. Sleep. Sleep more. Sleep any where, any time, any how. Dream of uninterrupted sleep.

2. Not totally blow my top at any one–a nurse, my loved one, the pharmacist…this could be tough (especially when you’re dealing with Alzheimer’s)  

3. Not eat my way into oblivion–food is not my best friend (repeat 10 times a day)

4. Remember where I’m driving–zoning out is dangerous–I may need a loud buzzer horn or taser. Stess causes zoning out, I’m sure.

5. Walk every day. Even if it’s just to the mailbox. Walking is good. Sun is good. I need this.

6. Get out and meet people. Normal people not in the health care/elder care profession. There’s a great big world out there and I need to see it once in a while.

7. To actually want sex and intimacy and do something about it. Sex drive? Is that like, four wheel drive? Yes, i remember….vaguely.

8. To get dressed in something other than a jogging suit–something NOT with an elastic waistband. This relates to not eating a whole frozen pizza and walking to the mailbox, doesn’t it?

9. Do something for me, just me. People do that? Lunch with a friend, getting my nails done, putzing through an antique shop–caring for me is actually part of caregiving…who knew?

10. Ask for help. Pray, cry, meditate, journal, scream, go to a support group, go to church, ask for respite care, pay for care for an afternoon off, try adult day care for my loved one. Ask, ask, ask–caregiving is not a lone sport. It takes a village.

Bonus–

11. Not be afraid–of caregiving, cancer, Alzheimer’s, ALS, or death.

Fear is a big woolly monster trying to gobble up your precious days. Turn around and face  it–yell big and loud–”I’m not afriad. I can do this.”

12. Attitude of gratitude. Each night before I go to sleep, I ask myself, “what was the  best part of  the day? Usually, it’s a dragonfly who stopped right in front of me–or a neighbor who gives me a big smile when she sees me. It’s the small moments that stick. Being grateful in a time in your life when so much is beyond your control is a way of turning the tables in your favor. The more you’re grateful, the more you have to be grateful for–it’s like a fan that keeps expanding.

Just like the other list–things to stop doing, other things to start. Push. Pull.

New Years is a magical time. Resolutions represent hope. Hope for change. You already know how to do this. After all, it’s just a re-solution.

 

~Carol O’Dell

Author, Mothering Mother–available on Amazon

 

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Do you feel this is the last Christmas with your spouse or parent?

Perhaps you’re looking at a  cancer diagnosis, or you’re at the end stages of Alzheimer’s or heart disease.

This can put a cloud over the festivities. Everything drips with meaning. You’re standing in Wal Mart and feel weepy.

Or…you can’t seem to wedge your butt off the couch. Flipping channels has somehow become  your life.

 

You don’t know it, but this is the face of grief.

We start grieving long before death enters the picture.

The word grief means Deep mental anguish, as that arising from bereavement.

 

So what do you do if you feel like this is your last Christmas together?
Do exactly what you feel like doing. Trust your gut, your heart, your intuition, your spirit…whatever you want to call it.
If you need to flip channels, then give in and flip. Are you missing something significant?
Could you really grasp “significant” right now? Even if it hit you on the side of the head?
I really do believe that after about 3 days, either you’d get sick of the same old “As Seen on TV” merchandise–or, you’d get carpel tunnel and you’d have to quit anyway. Be willing to give in and see where it takes you. I’ve learned that the best way to get over something  is sometimes to give in.
Even scientists have observed  this–they find that if a child is exposed to copious amounts of pizza, chips, cookies, and apples–they’ll eventually get the junk food crave out of their system and willingly choose the apple.
Grief isn’t something you can fight. Nor should you.
It’s natural, and for the most part, healthy.
But if you can, try not to jump time–don’t go to the future–to the time your loved one dies. Be present. That season isn’t here yet.
Also realize  that if you’ve been caregiving for several years, you may have hit the caregiver’swall–you may feel numb, exhausted, and zombie-llike.
Trust the process. If you go too far, you’ll know it–everyone else will know it.
If you do have the ability to rationalize and feel, then cherish this season. Don’t dread it or push it away.
Don’t make everything drip with meaning. That can get exhausting and annoying.
Your loved one won’t appreciate being inthe spotlight every second. Follow the moment.
When something touching, seweet, or poignant happens, you have a better  chance of recognizing it if you are ‘gently” alert.
If you get a few photographs or can jot down a few thoughts, then you’ll have something you can treasure for years.
If you can’t–or don’t–then let it go. I promise you, all you need is one moment–one glance, one gentle touch of the hand, one brush of the hair–somethig will rise to the top. You will have your moment. You will find the sweetness in the season. Just let it happen.
Our relationships–and the holidays–aren’t to be forced. 
Trust that this holiday will give you a gift–at the most unexpected turn.
~Carol O’Dell, and hope you’ll check out my book, Mothering Mother

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Most people, in fact 85% don’t want to go into a nursing home–that’s what they used to call them.

Many of our seniors cringe at the word and imagine long, dark halls, people screaming, sitting in soiled diapers, horrible food, and being abused. Thank goodness, this is not the norm–and there’s more vigilance to report elder abuse and substandard care today.

According to surveys done by AARP, most of us would prefer to Age in Place–meaning, stay in our homes  and augment care as needed–a mix of family caregiving, professional caregiving services, adult day cares, and other elder-care community based resources.

I highly recommend staying at home, including various elements of family caregiving, paid care, and community care–but I do know that there are times and circumstances when this just isn’t enough.

What Are the Different Kinds of Care Facilities–and Which One Is Right For my Loved One?

Contining Care or Graduated Care is when you buy into a community in which you can choose your living condition (small home or condo at first), and then “trade” it in when/if your care needs increase. Within one “complex” you might see homes or duplexes, condos or apartments, a building (care facility) that houses many units of care, and all these may be near a hospital or hospice facility. These are usually a large development and can offer meals, hired care workers, transportation, activities, and other amenities.

Assisted Living is similar and can be a part of graduated care. Assisted living can be houses/duplex, condos/care facility where the person has their own apartment but has access to additional help. There may be a place for meals, a van for transportation, and non-skilled care workers can be hired to do various needs and levels of care. Some assited living and care facilities are individually owned while others are a part of a larger corporation.

Care Facility or Skilled Nursing Care is considered a full-care facility and is what people think of when they say, “nursing home.” They can be a part of other facilities, such as the continuing care, or assisted living home, but they have the added component of a skilled nursing staff (RN’s–registered nurses) as well as non-skilled care, usually called CNA’s (Clinical Nurse’s Assistant). Care facilities are for people who have medical needs, have severe mobility issues (can’t walk, falls), and need supervision as well as medical care. They often have a staff of doctors and other care workers who will come to visit them, prescribe medications, and offer in-house treatments such as physical therapy.

Memory Disorder Facility or Center can be a part of an assisted living or care facility and focuses on the needs and care of people with neurological disorders such as brain injuries, advanced Parkinson’s or Lewy Body, Alzheimer’s and dementia.This facility has the feature of secured doors and exits so that people who tend to wander can’t leave. They specialize in dealing with the behavoiral, psychological and physical issues that come with neurological disorders. Since this is an area that overlaps, many of their clients need medical care/skilled nursing care/visiting doctors, etc.

Rehabilitation Facility is usually a short term facility that focuses on people recovering from surgeries, accidents, and for those who need various care treatments such as physical or occupational rehabilitation therapies. They are a “half way” facility people go to when they’re not quite ready to go home, or need more care than a graduated or assisted living facility offers. Most rehabilitation facilities are corporate owned and work closely with hospitals and doctors. 

How Do I Assess If My Loved One Should Go Into a Care Facility?

  1. They choose a graduated/continual care or assisted living on their own.
  2. They have no family nearby and no one can or will coordinate their care (don’t forget how helpful geriatric care managers can be in figuring out various stage of care and evaluating care facilities)
  3. They need full-time care, perhaps with needs of skilled nursing care as well–and this has become too much to manage for a loved one to deal with.
  4. Their dementia/Alzheimer’s has increased to a level to where they’re not manageable at home–violent, escapes, can’t be managed by one care helper–needs more supervision, medication, and physical control than the family/and caregivers can provide.
  5. Are at the late stages of various diseases/aren’t mobile/and the family can’t manage their care–perhaps hospice is involved and there are end of life and palliative care needs (pain management).
  6. You, the family caregiver simply can’t do it anymore–your own health or finances are falling apart and you’ve done all you can.

There are valid reasons for your loved one to enter a care facility.

You have not failed as a caregiver–nor are you “done” when your loved one enters a care center/facility.

Your loved one needs you more than ever to oversee their care and make sure they are safe, respected, and receiving all the care they need and deserve.

Also know that the first care facility may not be your last one–it may not be a good fit, you may have to change and try a different one. Also, as time goes on and their care increases, you may have to move them again.

Don’t forget that hospice and palliative care is still needed (and must be asked for) to supplement their care at the end of life.

You may also consider letting them come “home” to die.

You  have many options.

Helpful Links:

Great article:

newoldage.blogs.nytimes.com/2008/07/14/faced-with-caregiving-even-experts-struggle/  

~Carol O’Dell, Author of Mothering Mother–an Amazon Bestseller in Alzeimer’s and Aging Parents.

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Today, the Today Show had a six-year old little girl on their show who is a singing sensation. She can belt out the national anthem with a voice to rival Ethyl Merman. Natalie Morales introduced her and said that the little girl also lives with autism.

Words are important. Autism cannot be viewed as a death sentence–especially not for a child who has their whole life ahead.

Living with or suffering with makes a big difference.

If you have Parkinson’s, Alzheimer’s, MS, or cancer, you have to eventually come to choice–do you choose to live or suffer?

Personally, I hope to never say the word, “suffer” again. I don’t want to suffer with anything!

Suffering implies pain, sorrow, heavy burden…agony. And yes, there are moments, days, even months where pain and sorrow overwhelms life–but as my very religious, very southern mother used to say when asked how she was, she’d reply…

“Well…I don’t want the devil to hear me!”

She didn’t want to entomb herself in negativity.

Caregivers, how do you talk about your role? Begin to observe your words.

How do you introduce yourself?

“I’m just a caregiver?”

“I’m just caring for my mom?”

Really? Just a caregiver? That’s like saying you’re just the president of the United Stats, just a mom, just a CIA assasin!

Even if you are at home with your loved one, or even living with them. You can introduce yourself any way you like–”I’m an artist, I’m a teacher (even if you’re not in a classroom now, do you ever stop teaching? I’m in school (are you taking an online class? That counts.”

If you introduce yourself as a caregiver, then do it with pride.

But also introduce the fact that you’re a daughter, a wife, a friend. Your role as a caregiver is admirable, but your loved one needs to hear you say that you’ll always be their daughter/sister/spouse first.

How will anyone respect you and perceive what you do as important if you don’t?

Choose. Choose your words. Choose to care for your loved one.

No one is making you be a caregiver. You may think they are. You may believe that you have to, that your loved one has no one else, that it’s your responsibility…but realize that it is a choice. Other people in your same situation have said no. The world will not end. Is it the right thing to do? To say no? Every family is differentt, and my point is that you choose.

If you choose caregiving–part-time, full-time, in your home, their home, as a working caregiver, or an advocate for your loved one who is in a care facility–whatever the living/working arrangment is–choose. Caregiving is a part of who you are, it’s a role, what you do with your time and energy.

Take the helplessness, choice-lesness out of your vocalbulary.

~I’m Carol D. O’Dell, and I hope you’ll check out my book, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

It’s available on Amazon, other online stores and in bookstores. Kunati Publishing

I’m a family advisor on Caring.com, and my syndicated blog appears on www.opentohope.com.

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Face it, times are tough.

Can you afford to stay in your own home? Are you well enough to manage everything on your own?

Are you recently widowed and wonder if living by yourself is such a good idea?

Are you a boomer or sandwich generationer wondering how to care for/pay for your kids, your parents and save for your own retirement?

You (or your elder loved one) might be the type of person who would rather live in your own home or with someone you know rather than move into a care facility. Besides, care costs are astronomical. Even with medicare and medicaid, there are still a lot of hidden and unexpected costs, not to mention how challenging it is to find a care facility where you enjoy the people and the staff and get the care you need and deserve.

There are many reasons why family caregiving is a great option–it’s easier to take care of your loved ones if they’re living with you, most people prefer being with or near family, you tend to get better care from relatives and close friends, and it’s cheaper.

No wonder 80% of the elderly population rely on family caregiving.

In today’s precarious economy, it might just be a necessity.

I know of several friends and neighbors who had lost their jobs due to downsizing, budget cuts, and forced (or high encouraged) early retirement. Gas is four dollars a gallon and I almost paid ten bucks for a two pound bag of cherries at the grocery store today. I told the cashier I wouldn’t be buying those, thank you very much.

The strapped economy is hitting everyone, particularly the elderly who have to have their meds, pay for rising electricity costs still get to their doctor appointments. These aren’t luxuries. Nursing home costs are staggering, and not all are covered my medicare and medicaid. On average, the daily cost ifor a care facility s $350.00 a day–and memory impaired units range from about $450.-700.00 a day. A day.

But moving in with your adult children might not be ideal either.

Most people want to remain independent for as long as possible.

How do you stay in your own home? 

Plan early. Look into www.aginginplace.org

Consider long term care, but make sure you go with a reputable company who will be in business and honor their contracts for years to come.

  • When you buy what you think will be your last home, consider city, driving distance, doctor’s, care facilities, and senior resources. Can you live there after you can no longer drive? Can you use a community van or are there taxis? Is your home/bedroom on the first floor? Can you manage the maintance of your house and yard? Plan, plan, plan.
  • Buy property and build a smaller house or a garage that could be converted for a caregiver or family member. It’s an investment you’ll get to keep–and when or if you need to sell, it’s only improved your property value.
  • Consder renting a room–to another senior and split certain home or home health care charges
  • Convert a garage or attic and rent to a relative or younger person. You might even consider rent in  in exchange for services–college age, divorcees, and many people would benefit from this arrangement as well as nieces or nephews just starting out in life
  • Build an apartment onto your home–or if you do move into your children’s home, build one onto theirs so you still have privacy and can come and go as you please
  • As time goes on, consider a small group home run by a licensed care worker who only takes in 4-8 persons–ususally, the charges are less although they can do less for you medically, so consider your health and medical needs in making this decision

How to Live with Family Members Without Hating Each Other

  • Establish rules up front–realistically know you’ll have differences and times when you need to talk honestly about what’s bothering you. Make sure you can sit down and do this knowing you’ll be heard and respected–and that you offer the same in return
  • Know that there will be a honeymoon time, aand a time of disillusionment when you wonder if you made the right decision–but also know that this too will pass
  • Accept that change is inevitable. Don’t pine away for what once was–embrace the now and choose to find the good in each day
  • Give each other privacy–still knock and be considerate of quiet, rest, and alone time
  • Be sensitive–if your loved one is acting odd, they might be going through something they can’t share or verbalize–there’s a time to be tender and patient with each other
  • Plan certain meals or times together–but don’t overdo it
  • Hire caregiving or chore help–don’t expect your family to do it all
  • Find ways to be needed and give. Help out–offer to do a consistent job
  • Try not to complain about your health or living conditions–everything may not be perfect, but it still might be better than your other choices
  • Refrain from commenting on their life choices–how they dress, where they go to church (or not), the state of their marriage–do more listening than advising
  • Make friends and connections, don’t rely on your family to be your everything
  • Smile, be easy to get along with, and show gratitude–it’s contagious, so maybe you’ll get some in return
  • If you do have an issue, don’t let it fester. Sit down, say your peace, have a possible solution in mind, and then deal with it and let it go
  • Eventually–about six months to a year after moving in together, you’ll begin to settle in but it may take up to two years for it to feel like home. You might feel lonely at times, lost and undefined.
  • Be sure to reach out to your new community–join a club, a senior citizen center or a church–make new friends–even if it’s hard or scary, it’ll be worth it. We all need friends.
  • Accept your place of honor and dignity–you hold a special place in the family, but you have to know that and own it first before anyone else does. Embody a sense of wisdom, confidence, and respect within yourself–others will begin to sense it when they’re around you.
  • Expect that at some point you’ll have a big fight or misunderstanding. Families do those kinds of things. It’s okay. Forgive each other. Be quick to say, “I’m sorry.” Laugh about it.  Even if there were yelling and pouting involved, so what? People act crazy at times. Who else can you act up with other than your family?

Family caregiving is part of who we are. No amount of money can buy love. If you’re blessed enough to have a brave enough family who are willing to be togehter, love and care for one another in one way or the other, be grateful.

I was a family caregiver. I brought my mother, who had Parkinson’s and Alzheimer’s, into our home. We built her an apartment onto our home. She lived with us for close to three years. So I know what caregivers face. I know how hard at times, it could be–the physical work, the emotional undertow that gets kicked up, the strain of living together after years of running your own house. All this takes some getting used to.

It’s okay to be mad, hurt, or frustrated with a family member. Families are resilient. They know how to love fierce and forgive easily (or in some cases, eventually). As my friend and fellow author Cheryl Kaye Tardif says, “It’s not about how to live with your family without hating them–it’s about living with your family without killing them! You can hate all you want!”

Emotions come and go. Family committment runs deep.

Life changes and people aren’t perfect, but a family is a great thing to have.

~Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

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Last night, the television show Boston Legal had one profound moment relating to Alzheimer’s.  

The premise is that one of their leading characters, Denny Crane (played by William Shatner) has early Alzheimer’s. He’s a brilliant attorney who has never lost a case–and he’s part owner in firm. The other law partners are hesitant for Denny to continue to litigate. Not only is he forgetful, he sometimes does or says bizarre things. Things Alzheimer’s patients might say or do.

Great scenario because I happen to know a great law professor from Yale who lives in my community who now has Alzheimer’s. You can be homeless and live under a bridge–and have Alzheimer’s, AIDS, or cancer–or you can be the president of the United States.

At one point, Alan, Denny’s best friend is having a conversation with Jerry, another lawyer in the firm, (who suffers from Asperger’s syndrome) about what a phenomenal job Denny did in court. Jerry blurts out, “Too bad Denny’s dying from Alzheimer’s.”

Alan is shocked. Insulted. He retorts:

“Denny’s not dying from Alzheimer’s. He’s living with it.”

There’s a great distinction here.

One of the drawbacks to early diagnosis is giving up too soon.

Early detection should mean that you receive proper medication, spend time with your loved ones, and make plans to live–not die.

In the case of Alzheimer’s, the average patient lives 8-10 years, and even longer depending on the age you contract this disease. Parkinson’s, ALS, MS, and other diseases can even offer a longer lifespan. Coincidentally, the average caregiver spend 4.3 years caregiving–leaving a bit of a discrepancy here.

The message is: don’t give up too soon.

Don’t hear a diagnosis and go home, draw the curtains, curl up in a fetal position and wither away.

As a family member or caregiver, it’s a blow to hear that your loved one has a terminal illness, but you still have to get up and face each day.

Michael J. Fox says that Parkinson’s is “the disease that keeps on taking.” He’s chosen to live with his disease. He’s chosen to do this for the millions who look to him and rely on him to raise money for research, for the difference he’s already made, but I’m sure he does this even more for his wife and his children.

A recent example is Ted Kennedy’s diagnosis of a malignant brain tumor. He had a seizure and went into the hospital just last weekend. Yet today, he and his wife, Vicki went sailing. He loves sailing and the Boston Globe said he “finds renewal on the water.”

Ted Kennedy is actually teaching his family and others how to treat him. The Chicago Tribune wrote, “Kennedy’s cancer is dire, not hopeless.”

It’s proven that prayers and good thoughts can impact people’s lives clear across the country–and we can create the atmosphere and attitude around us by how we handle our own bad news.

Maya Angelou says, “We teach people how to treat us.”

Yes, it’s natural to feel kicked in the gut.

It’s natural to take to the bed, cry, get angry, lash out or pull in. Don’t beat yourself up for going through this very natural stage.

But after that, it’s time to move on.

You (or your loved one) most likely won’t die tomorrow. Or the next day.

So you take your meds, maybe get physical or occupational therapy. Change things around in your home, hire a home health aide, buy a walker or scooter or whatever else you need. Life is different. I don’t doubt that. But life can still be good.

You can still find joy–and purpose.

Sometimes our purpose is nestled in our situation. Sometimes something–or someone arises in our midst and a window opens where a door shut.

Yet, there will come a time–hopefully in the distant future when the tide turns again.

You, or your loved one may die from this disease, I can’t promise you won’t. 

If not, from something else.

We have to eventually accept that as well. Another transition. Another acceptance. Another change.

But until then, live, live, live, live, live.

~Carol D. O’Dell

Check out her book, a day-to-day, intimate and honest look at caregiving…

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated blog at www.OpentoHope.com

www.kunati.com/mothering

 

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