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Who is an invisible caregiver?

Millions of spouses, adult children and friends who are caring for someone they love–but having to “do it on the sly.” It’s a tough transition, to admit you need care. After decades of being the strong one, the provider, the professional, the hub of the family, admitting that you need help in and out of the bed, in and out of the car, or down the stairs because of a chronic illness, disease, or after surgery can feel like a blow to the ego.  And it’s not who they are. Call is pride, but there’s a time in a person’s life when they aren’t ready to admit they need care. Their worth goes far beyond their need for help.

I met a gal last week who is caring for her husband, but it’s not a label she gives to herself. He has MS and is in a wheelchair. He’s on disability and yet he strives to see himself as he always was–a competent businessman, father, friend and spouse. He is–all those things–but he needs a little help now and then.

They married last year and their devotion and honeymoon love is obvious. They look at each other with such tenderness. She walked into this relationship eyes open. His disability isn’t what she fell in love with–it’s his charm, his wit, and his generous spirit. But his disability is something they have to work around.

She helps him dress–on difficult days. She makes sure his meds are delivered on time and she helps him sort them and reminds him occasionally (wives tend to do that–some people call it nagging but it’s all in the interpretation). She washes his hair. She works her schedule around his so she can accompany him to doctor visits so she can help manage his care. And since he’s prone to infection, she takes extra care to keep their environment germ-free–and keeps masks available for when they’re out in public during flu season.

The other night, he had a fever and decided to sleep downstairs on the couch. He just didn’t have the strength to head upstairs, change clothes and do his normal bedtime routine. She slept in the recliner next to him and checked on him several times that night–to make sure his fever didn’t spike.

Yes, technically she’s a caregiver. But her husband is a young 50 years old,  and his disease takes such a toll on his life and health that she doesn’t want to see him as needing care. He wants to be seen first as a man. That’s how she chooses to see him as well.

There are times when naming something brings a sense of relief–so that’s what it is. The definition helps define us. And then there are times, as in this gal’s case when it changes the relationship. She’d rather be an “invisible caregiver.” She’d rather consider herself his wife, his companion, his confidant.

Caring for a spouse isn’t a role. It comes with “I do.” All the invisible caregivers out there–spouses, children or friends do it out of love and loyalty. They choose to camouflage the care they give in order to keep the emphasis on the relationship–to give their loved one the dignity and respect they deserve.

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Caregiving takes all of you–your heart, your arms, your back…and like all relationships, we’re bound to make a few mistakes along the way.

I made plenty of mistakes caring for my mother. She had Parkinson’s and Alzheimer’s and her care progressed over the course of 12 or so years. At first, my caregiving consisted of calls, driving her places, overseeing her medications and doctor appointments–to eventually moving my mother into my home so I could give her full-time care. My mother passed away in our home and those last few months were some of the hardest and one of the most important times of my life.

So I understand why caregivers do it–push themselves to the edge. We have to give it our all at times–during hospital stays, as Alzheimer’s takes a dark turn, or as cancer ravages those we love.

I was watching a special on NASA’s quest to land on Mars. It’s 100 million miles away. That’s quite a dream and they’ve made lots of mistakes along the way. Costly mistakes. Some blunders can be blamed back to one person or one department, but some accidents are random, unpredictable–human error, solar flares, that most dangerous time when they enter the atmosphere that could wipe out everyone’s work in an instant and set research back years. It’s a huge risk, but the alternative is not to try at all.

They call that time the six minutes of terror. That’s when they’re not in communication and whatever happens is just going to have to happen.

That’s what it’s like to love someone, to try, make mistakes, deal with other people’s mistakes–and it all comes down to six minutes of terror when you have no idea how it’ll work out–all you can do is hope.  

There are a few caregiving mistakes you can avoid:

  • Caregiving too soon. Those first few calls from the emergency room scare you do death and it’s so easy to buy into the drama, to freak out, worry, and jump in. But the problem is, you’ve got to pace yourself. Caregiving can be one long journey and it’s wise not to react emotionally to every blip, to ask for help, and to look at the big picture and make short and long-range plans.
  • Caregiving too late: I was so busy being a mother to my children that I believed my mother when she insisted she could live on her own. I had little checks, little moments of concern–but I denied and ignored them. I wanted–and needed–her to be okay. I knew she was happy living at home–but I wasn’t paying attention. She wasn’t eating right, she was falling all the time (lots of bruises, lots of excuses), and although I was driving her or arranging for her transportation needs, she was desperately holding onto a life that was slipping away.
  • Leaving Yourself Out of the Equation: Worry, lack of sleep, long periods of recuperating from a bad fall or an extended hospital stay…you start to forget. You throw on your clothes, forget to comb your hair, don’t bother with check-ups, don’t fill your prescriptions. You’re always on alert. You don’t mean to, it just happens and months or years down the road and you forget a piece of you. You forget how to have fun, how to let go, how to relax. 
  • Taking Every Piece of Advice or None at All: Either extreme is exhausting–and scary. When I first realized my mother had Alzheimer’s I read everything i could get my hands on–it freaked me out.  I could see our future–her completely mad, me attempting to reach her. In truth, it wasn’t like that–not for a long time. We still had each other. We laughed, We ate together. We held hands. Yes, it got bad at the end but I’m still glad I went down this path. Too much information can drive you crazy. No information is foolish–there’s good out there. Treatments, medications, resources that help–but it has to stay in balance. You have to decide what you listen to.
  • Giving into Guilt and Depression: Both are bricks on your soul. They’ll drown you. I can’t say it’s not going to happen, that you’re not going to have bouts of guilt. You will. I can’t even tell you that depression won’t sneak up on you. But be careful. Depression is tricky. It’s like an alligator–it’ll take you under and won’t let you back up.
  • Not Trusting the Journey: You’ll get off center. You’ll lose your way. You’ll go to the bitter edge–but don’t believe that can’t find your way back.  Humans are amazingly resilient–we can nearly freeze to death or drown, fall down a mountain, recover from life-threatening illnesses–and survive. Don’t think for a minute that you can’t recoup from caregiving. You can. You gave of yourself and the good that you gave will return to you.
  • Not Letting Go: There comes a time when you have to let go. Whether it’s creating a healthy emotional distance or grieving an impending death, we have to learn to let go. I remember one very difficult night when my mother was having a bad episode. She was frantic, not knowing where she was, and I had to pry her hand loose from the rail just to get her back in the bed. I couldn’t do it by force and I didn’t want to hurt her.  I had to undo each finger, gently, calmly, and I knew right then that I was meant to help her figure out how to let go of this world. Letting go isn’t about giving up. Letting go is really about trusting.

All we can do is self-correct. We get off. We yell. We beat ourselves up for saying or doing the wrong thing. We fall into a funk. We lose our way–and all we can do is recognize it and alter our course. Every day, every hour offers a new choice.

Life’s a lot like that bouncing Land Rover on Mars. Will we survive the impact? Will we survive our own mistakes? Will we experience our own six minutes of terror?

Sure we will, but we have to try. 

~Carol O’Dell

Author, Mothering Mother

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Getting bad health news is like a kick in the gut. It’s hard for you, and your family and  the caregivers. in your life.

Oprah had a great show today featuring Montel Williams. He has MS (Multiple Sclorosis, and he was candid about how tough this disease really is. His courage was astounding. He lives in horrible pain every day all day, and he said that the only time he isn’t in pain is when he’s focused on helping others.

Oprah and Dr. Oz featured several people who have had more than their fair share of adversity, and each one of them had been humbled by their experience–and even made better for it.

Fran Dresher, famous for her TV series, “The Nanny,” is a cancer survivor, and she put it best when she described her journey and all it has taught her, “Sometimes the best gifts come in the ugliest packages.”

Dr. Oz spoke of what people can do when it comes to getting bad news. Folks who are dealing with Alzheimer’s, Parkinson’s, cancer, ALS, MS, and other really hard diseases know  just how hard it was the first time the doctor sat them down. And the difficult part is, they weren’t prepared–and, it might not be the last of the bad news.

How to prepare for/handle less than great news:

  1. Feeling stunned, in shock, in denial, or angry is absolutely normal. Don’t do anything at first except feel or not feel–let this initial wallop subside before making any crucial decisions.
  2. Get educated. So, you now you know. Hit the books, hit the net, talk to people, weigh all the information and get to know this disease, its symptoms, the medications and therapies used to help this disease, if there is any research/clinical trials/studies, what operations/procedures there are, what support groups there are, and begin to form a short range and long range plan.
  3. Take responsibility. You may, in the course of several years have many doctors, therapists, home health aids, nurses…and the only constant is you–so you be the captain of your ship. Keep your information together, chronicle your doctors, meds, and care–because five years from now, you may be the only constant left in this picture.
  4. If you know you may be getting difficult news on a particular day–bring support–and Dr. Oz mentioned that you need someone who can support you–not necessarily your spouse or someone who’s going to fall apart–bring someone who will listen, take notes, be able to let you vent, and even drive you home.
  5. Get a second opinion. And don’t tell them about the first opinion. Dr. Oz said that, and I agree.
  6. Breathe! For now, for today, you are alive. Live while you’re on this earth. Don’t give up too soon. Even if your diagnosis is life limiting, do all you can to care for yourself, and be present for your loved ones.
  7. Decide who you will tell and when. This is up to you, but realize that you will have to face this. As scary as it is, it’s better to stay in control and keep it on your terms. Don’t get caught up with other’s emotions. Bad news effects people differently, and one thing we all do is internalize it–what we would do if we got this news. Let others go through their own journey, but stay on yours. You’ve got enough to deal with, so love them, but stay with “you.”
  8. Find a health advocate. You need one person who will create that one continuous line for you. You may be dealing with pain, confusion, drug therapies, and surgeries. You won’t be able to write down specialist’s names to follow up with, or remember what time you took your last dose–so let someone be there for you. I know how scary it is to not have control, but acknowledge that you need help. Be appreciative–and ask them to be your health advocate. Tell them what you need–be clear and choose someone who can be objective and committed.

In the beginning, it’s going to be rough. Some moments, you’ll be in full out panic. Other moments, you’ll be comatose–and these moments will overwhelm you. But know that these initial days of despair will subside. The sooner you can get the support and plan of action you need, the better you’ll feel. It won’t easy, but as Fran Drescher said, there will be unexpected gifts and insights along the way.

~Carol D. O’Dell

 

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

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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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Every day, a child’s mother, father, grandmother, grandfather or sibling dies.

Experiencing death while still a child is common, but that in no way makes it less difficult.

There are ways to help a child deal with grief.

When a child loses a loved one to death, that loss can have a profound effect that can even last a lifetime.

Emotional, psychological and physical trauma can occur and effect how a child views the world.

If grief is talked about and a child is given the proper coping tools, is surrounded by love and support, then the negative impact can be lessened.

But too often, adults are at a loss. They’re grieving themselves, and they don’t know what to say or do to comfort a child.

They don’t know how to tell a child that someone they love has died.

They don’t know how much to share with them–they either tell too much or too little.

Adults can simply “freeze” and stop communicating, and the child is left to grapple with their sorrow alone.

They can also insist that the child be happy and move on–because it makes them feel less guilty. They try to live life through their child–but children also have their ups and downs when it comes to grief. They can’t be puppets that we demand to be “okay,” because we need them to be.

Many people expect and demand that children are expected to go on with their lives.

They want them to hurry and go back to school. They don’t want them to get behind. How sad. Something as profound as a parent, sibling, or grandparent dying is so much more significant than an A in algebra.

Just days or even hours after a grandparent dies, many children are expected to return to school, sports and activities. Adults someone need the child to be busy so that they can deal with “adult” matters of business and details, but the child has his own grieving process to go through.

Children have so many issues to deal with–growing up, adolescence, fitting in, weight issues, pressure to smoke or smoke pot, divorce, family issues, academic and social issues–and it starts at a very young age.

When are they supposed to feel safe and free to open up and talk?

When can they express how much their miss their grandad?

How Do You Tell a Child That a Loved One Has Died?

Keep it simple. Use “died”, not “He is sleeping.”

Allow your child to express raw feelings freely or ask questions.

Answer questions honestly and simply. Do not go into detail, unless asked.

If the death was due to a violent crime, explain that they are safe now, nd you will do all you can to make sure they stay safe. 

Offer a comfort object–blanket, doll, teddy bear. Even if they’re “older,” something cuddly can reduce anxiety.

If the body is suitable for viewing, allow the child to see your deceased loved one, if requested. Prepare the child for what he or she will see.

Tell your child what will be happening in the next few days.

Give your child choices in what to do. Some children want to go to school the day of the death–it’s comforting and feels “normal.” Give them a choice. Whenever they return, inform the school of the death before your child returns.This makes their teachers and classmates more sensitive. Most schools have a school counselor that can also assist and be made aware of the situation.

Reassure your child that he or she will be cared for and explain the plan.

Children sometimes open up easier if they’re doing something with their hands–playing cars or helping bake cookies–it can take awhile for them to feel safe–and they feel less on the spot if they don’t have to look at you but can pretend to be “busy” with their hands.

 Don’t Know How to Talk To Your Child: Here’s some Easy Conversation Starters: 

 I’m sorry your grandmother/papa/mom/dad/sister died.

 What was your dad/mom/brother like?

Tell me about your__________. 

What was his favorite food/book/thing you did together?

 What do you miss the most? What is the hardest time of day for you?

I cannot know how you feel, but I remember how I felt when my __________ died.

 Whenever you want to talk about it, I’m here.

I’m thinking about you especially today because I’m aware that today is your mother’s birthday (anniversary of the death, your birthday, etc). 

If you don’t want to talk, we can still spend time together.

 

WORDS THAT CAN HURT:

I know just how you feel. I know just how you feel…my dog died last year. Lick your wounds and move on. You’ll get over it. It will be okay. Don’t think about it. You are better off without him. Don’t cry. It’s your fault. God took him so he wouldn’t be in pain. Tears won’t bring her back. Be strong. Forget about it. You are the man/woman of the house now. You should feel ….(proud, relieved, happy, sad, etc.)

Children May Express Grief Differently Tnan Adults:

Their emotions may experience highs and lows. They may laugh inappropriately–even at the memorial service. Don’t think this is because they don’t care. It’s difficult for a child to figure out how to handle their emotions. They may avoid sleep–or a teen may sleep all the time. They may zone out and not seem to hear anyone talking to them.

Become clingy and panic if you’re not home on time or don’t pick them up on time. Act rough or violent toward a sibling or friend. Defiantly disobey.

Teens may become daredevils–drive fast, extreme sports, breaking and entering–anything to feel “alive”

They may even try to “test” your love.

When Do You Seek Professional Help?

When the symptoms (lack of sleep, depression, agression) continue for weeks or months and grow in intensity.

When they can no longer function in school or around other people

When they isolate themselves for too long

When they become dangerous to themselves or others

They fixate on death, experiment on animals, or are exhibiting cruel behavoir

What do you do if you suspect your child or teen is not handling grief well?

Talk to the school counselor, your pediatrician, or clergy

Get a recommendation for a therapist who has helped children through grief.

Don’t settle for just a prescription. Talking and expressing their emotions is crucial to the healing process.

Don’t go just one or two times and think your child is “better.” Follow through and be consistent.

The Best Advice?

Be patient. Expect some some highs and lows. Share your own grief journey. Listen. Reassure. Be there. Provide help if or when it’s needed. Let them know it’s okay not to be able to handle this all by yourself–we all need each other. 

 

In the United States, approximately 4.8 million children under 18

are grieving the death loss of a parent.

~Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

Helpful sites:

www.opentohopefoundation.com

www.beyondindigo.com/children

www.griefnet.org

www.childrensgriefnet.org

www.kidsaid.com

I’m Carol O’Dell, author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon. I hope you’ll visit my blog again.

www.mothering-mother.com

 

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Today, I switch roles from the caregiver blogging perspective to that of the care receiver–

specifically, the aging parent.

If you’re a caregiver/son, daughter, please read this post.

You need to put yourself in their shoes.

But I don’t want to live with my adult children!

I don’t blame you. Me neither.

(And I wrote the book, Mothering Mother–and my mom lived with me the last (almost) three years of her life!) But that’s my point–my mother lived on her own–with Parkinson’s and early dementia until she was 89 years old!

We’ll all be in this predicament one day–if we live that long–so we need to be empathetic.

My kids are grown, responsible, and we all love each other–and I still don’t relish the thought of permanently living with them! I am a big proponent of family caregiving–but do it when the time is right.

No one wants to give up their independence.

We like things our way, our household “rules,” TV shows, and favorite laundry detergent. Things seemingly insignificant choices give us a sense of autonomy and joy to every day life.

I don’t want to be a burden. 

I hear this a lot. I feel it on a personal level, but know that when it’s necessary–cancer, end of life, when it’s really needed, then it’s not a burden. It’s a privilege–

Ad you still have much to give.

Encourgement, humor, appreciation, family togetherness is a rare and precious gift and should not be under-appreciated.

I feel privileged to have children. And I know if/when I have to, we would all do our best to make it work. I’m grateful I have the option if I needed it.

There are many people who do not have children. Or their children are not able or willing to help.

No time for a pity party. Get busy! Use this as a catalyst to get busy doing just that–planning your life–for quality and purpose.

If you don’t want to live in a care facility (prematurely, and hopefully never) or with someone else–family member or not, then I (and you) better have a plan.

Note: Decide today to be okay how your life turns out–either way. Who knows what wil happen? 

Have you heard of the aging in place movement?

This July AARP released a new report citing that 87% of people with disabilities age 50 and older want to receive long-term care (LTC) services in their own homes.

The National Aging in Place Organization is about collaboration and education to live at home as long as possible.

Aging in Place includes building/altering your home so that you can stay there safely as long as possible.

It might also include a ramp, ample doorways and bathrooms for wheelchair accommodation, safe flooring, and even a space for live-in care. It’s up to each individual to make these arrangements to suit (by anticipating) their needs. This term is also loosely used to help individuals begin to plan for their future in terms of how and where they want to live as life progresses.

Aging in place might even include moving so that you are living in an area where retirement and aging is not only enjoyable, but that you also have ample resources within your community for the care you might need.

Or…it might include living close enough to your adult children so that they can easily check on you and manage your care without having to live with you. ( I know of three families in our neighborhood whose mothers/parents also live in another house in the neighborhood).

Recently, after Tropical Storm Faye, I saw one of the son-in-laws picking up debris out of his mother-in-law’s yard. At least he didn’t have to drive an hour or two to do this little chore–or worry about someone charging her an exorbitant price for a job that took less than an hour.

How to Arrange Your Life So That You Can Live at Home Longer:

(consider one or more of the following suggestions)

  • Move your bedroom on the first/main floor
  • Do a computer search or call your council on aging and get a list of all your community’s resources now. Don’t wait until you need help to start this process.
  • Consider redoing your main bath to accommodate a wheelchair/walker–and make your shower easy to get in and out of
  • If your spouse has passed away, consider a roommate. Finish a garage or basement if you’d like it to be more private and separate. This $10-20,000 investment (if it’s done well) could give you added years at home–you could even trade rent for care.
  • Be sure that if you choose to do this that you both sign a contract for renting, you get driver’s license info, run a background check and never ever give them access or personal/financial information.
  • Even though there are risks involved, having someone live with you or on your property can provide a certain sense of security, companionship, and allow you to stay home much longer than living alone.
  • Consider an alarm system if you feel you live in an area where you’re vulnerable to break-ins. Check with your local police to see if this is a common occurrence. Elders can be targets for easy crimes.
  • Don’t blab to every cable and lawn guy that you live alone. Always act like your son/nephew is in the house, coming home, on the phone. Even if you don’t have one–never let others think you’re always alone. Don’t be an easy target!
  • Consider “the button,” a monitoring device you wear in case you fall. There are systems that will call and check on you morning and night (of course, you pay extra for this), but it might give you and those who love you a peace of mind to know that you can call for help at any time.
  • Wear the thing! My mom was terrible about leaving it on a piece of clothing she wasn’t wearing, forgetting where it was–and caregivers, family members–if your loved one has memory loss, this may not help them. They won’t necessarily remember they have “the button” on, or even what it’s for!
  • Get rid of clutter now! Clutter can cause you to fall and gets to be a real hassle for those caring for you. Don’t leave this to your family to do later–give those sentimental items to your family members now so that you can see the joy on their face when they use their grandmother’s dishes or wear a family heirloom piece of jewelry
  • Gather all your important documents–insurance info, cards, prescriptions, life insurance, house insurance and living will. Place these items in a portable box and let your loved ones know where it is–for easy access. 
  • Do that living will now–don’t make your loved ones have to guess or fight over whether you’d want to be put on a ventilator or not. Be clear. Make several copies and give them to all the important peopel–one for you, your main doctor, the hospital you’re likely to go to, and one or two loved ones/guardians who would get to you quickly in times of emergency.
  • Get a recliner chair that can lift you out easily (consider this your next purchase when the current chair needs to be replaced)
  • Eventually consider a bed that is motorized–this added expense really helps if you have back problems and can sometimes be covered on insurance
  • Place tread on any slick floors inside or outside your house to avoid slipping
  • Remove any throw rugs that might trip you–(you may need to do this later or if you tend to shuffle)
  • Begin to think about your options if/when you can no longer drive–is there a senior van in your area? Friends/neighbors who you can ride with or will pick up a few items for you? Even consider a taxi–most areas have taxis (even if you’ve never used one in your area before, they’re probably there). Don’t sit at home and waste away–even if your eyes or your coordination begin to wane, you can still get out and enjoy life.
  • Continue to be a part of your local church/temple. Make friends–you need them, and they need you! Churches and community organizations are there to help. Let them. Helping others make us feel good–don’t be so stubborn and independent that you don’t allow someone else to give and feel good. If someone is willing to pick you up to take you to Sunday School or choir practice–let them~ You still get to go to an activity (which is good for you), and they feel like they’ve helped someone. Win-win.
  • Get to know your neighbors. You can all keep an eye on each other. Be nice to the kids in your neighborhood–they can rake your leaves or bring you the mail. Most children and even teens long for a grandparent and don’t get to see theirs enough. Wave! Smile, get to know their moms and dads so they trust you. Bake a cake and take it to them. Cultivate relationships. Old-fashioned neighborliness and friendship never grows old and is never out of style.
  • Choose where you want to pass away. Hospice offers you the choice to spend your last few months/weeks/days at home and can offer palliative care (pain management). Most people choose to be in their own home and to surrounded by those they love. Let people know now–most areas of the country have access to hospice. The diagnosis is that you have a life-limiting condition with a diagnosis or a year or less to live.
  • Don’t wait until the last minute–ask for hospice. Anyone can refer you to hospice (including yourself or your physician). Also know that many cities have more than one hospice with varying levels of care and options. Check them out to see what’s available to you.

Bottom line:

Plan now. If you’re over 50, then you better start planning. Having a 401K isn’t enough. It doesn’t take care of the details and quality of life–and money won’t fix everything.

Adapt your house to suit your aging needs.

If it’s not too late, and you need to, move closer to family so that it’s not hard for them to drop by and check on you.

And…or…live in a community that is “elder friendly,” with lots of resources.

Stay involved with people. Accept their help. Give back any way you can. A smile, a hug, homemade cookies will get you lots of friends. Neighbors are important. Do more than wave. You might need them one day.

Stay/get involved in church and other community activities. The more plugged in you are, the more people you have in your life, the more your mind/body stays active. Staying active will keep you at home.

No longer driving is not the end of the world. Figure out how to make it work–taxi, community van, church members/neighbors.

Consider a roommate or a family member living arrangement. Just be safe, sign a contract, and do a background check. ( I know of several nieces/nephews who are young and starting out in life by sharing a house with an aunt or grandmother).

Get help when you need it–hiring day-time care is cheaper than a care facility. There are many great companies such as Comfort Keepers who are licensed, bonded, flexible and reasonable–usually less than $20.00 an hour.

Wherever you are and whatever life throws at you–continue to smile, see the good, and find ways to give and receive love.

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