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Archive for the ‘neurology’ Category

You want to know what time of year is the busiest for neurologist’s who specialize in Alzheimer’s, dementia, Lewy Body, and other memory disorder conditions?

January.

Why?

Because families tend to gather during the holidays.

Maybe it’s been a few months (or even since last Christmas) since you’ve seen mom or dad.

Or, maybe your spouse says something odd at the family get together.

Maybe he asks if Aunt Tilly is coming even though she’s been dead since 1992.

That’s how it happens: We notice the difference in our loved ones if we haven’t seen them in a while–when their normal routine is disrupted and it triggers a different response.

You fly back home, but now, you’re concerned.

Last Christmas you just attributed it to aging. Everyone forgets now and then, right?

But Alzheimer’s and other neurological/memory loss issues go beyond losing your car keys.

Visit the Alzheimer’s Association site (click here) for the ten most common warning signs of Alzheimer’s.

What’s the next step?

If you live far away from your parents, you may want to start visiting more often–or you may want to check into geriatric care managing companies who can help keep an eye on your loved one’s situation.

Does Mom (or Dad) have Alzheimer’s? What do I do?

  • First, check out the ten warning signs
  • Start calling and visiting more often–no one wants someone to butt into their life if there’s not a real relationship to back the sudden concern
  • Talk to your other parent (if they’re still alive) ask them what they think
  • Talk more than once–they may be resistant at first–ask their opinion and reassure them you’re going to be involved and will help find solutions
  • Get your parent (or other loved one) into see a neurologist that specializes in Alzheimer’s/geriatric patients
  • Get an official diagnosis
  • Create a folder/organizational system to keep all the paperwork associated with the care of your loved one–you’ll need it
  • Consider medications
  • Begin short term and long term plans
  • Much of life can continue on as it is now–make any necessary changes gradually. It’s important that your mom or dad doesn’t feel like this is a death sentence. You can still have a rich and meaningful life–encourage your parents/spouse to continue on with church, activities, vacations, and every day activities for as long as they can.
  • What insurance do they have? Do they have long term care coverage?
  • Contact your local/regional/state department of elder affiairs or council on aging–these are government organizations that have a bounty of information
  • Go online and begin to help research community care resources such as adult day care centers, respite care, caregiver’s support groups. There are great websites such as Caring.com and Health Central to help educate and support both the person facing the disease and the caregivers and other family members.
  • Encourage your loved one or spouse to attend an Alzheimer’s (or other memory disorder they may have) workshop/talk at their local hospital, or other care facility
  • Look online for your local chapter of Alzheimer’s Association, Parkinson’s Foundation, etc. They’ll have a list of resources in your area.
  • Consider home health care–many private company’s such as Comfort Keeper’s offer at home care and assistance on a daily or weekly rate
  • Talk to other family members, especially siblings and brainstorm about ways to help–calling, home care, repairs, time off for the other spouse
  • Talk to everyone about a long term plan. If your mom/dad/spouse ever needs to go into a memory disorder care home in the future, what are your options?

This is just a basic list, but it’ll get you started.

I had ignored the warning signs that my mom had Alzheimer’s/dementia for a couple of years.

She wanted to continue living independently, and I wanted her to as well–for her sake, and so I could go on my life.

I was in my late thirties, I had three teens to raise, a husband, a career–I really didn’t want to face the fact that my mother had Alzheimer’s.

I didn’t do any of this deliberately. I didn’t even know I was doing it. That’s why they call it denial.

By the time I figured it out, (my mother hid it, made excuses) she was almost past the point of medication helping. Don’t wait that long.

Emotionally, you and your family have some issues to deal with as well.

I’ll address that in another post, but know that it’s normal to feel kicked in the gut, angry, shocked, scared about the future–and concerned that if your parent has it, you could get Alzheimer’s as well.

You’re not alone. Sadly, millions face the diagnosis of Alzheimer’s every day.

The good news is, there is help.

There are more resources, medications, and support out there now than there ever was.

You’ll figure out how to do this–how to handle the changes. Life can still be good–for everyone.

Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

Family advisor at Caring.com

 

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I have a friend who fled New Orleans a few days ago.

He is father, a dad, a son, and a husband. He left town with a caravan.

He’s a caregiver extraordinaire. Not because he thought it’d be fun.

It’s because he loves his family.

In one car was his wife, his wife’s mother who is wheelchair bound and with a catheter and oxygen.

In another a car iwas his college age daughter with all their belongings.

In another car was his teenage daughter with all their pets–four cats, and a puppy.

He was driving the lead car–and in his car is his mother and father. His father has Alzheimer’s.

They’re headed to a hotel in Texas to hold up until Gustav blows over.

He learned the hard way.

They evacuated for Katrina,but only after the winds and rains started. Their house had to be demolished. They were living in a hotel and fema trailer for 15 months.

Now again…

My heart aches for him. He’s got to be exhausted and worried. How many times can he do this?

If he moves to another city or state he has to get a job, relocate kids in school, move his parents and his mother-in-law and parents, all of who depend n him and his wife.

This is the epitome of being a sandwich generation. Enough stress to make your head explode.

What catastrophe could come your way?

Nature? Could you get slammed with a blizzard? A flood? What about a terrorist attack? We can’t say that won’t happen…

What would two weeks without electricity do to you and your loved ones? What if their meds ran out? What if you yourself got sick or hurt and could no longer maintain your caregiving responsibilities?

Here’s a short list of preparing for emergency care with a ill or aged loved one:

  • Know your route out of town if you need to evacuate
  • Don’t wait until the last minute
  • Keep meds and medical information in a plastic container that won’t get wet and will be easy to grab and go
  • Don’t over talk this and get your loved one worked up
  • Don’t watch the news in front of them–make your plan and be prepared. Quietly move to go items near the door or loaded into the car
  • Consider golashes for the entire family–if there’s rain or snow or ice, this makes it easier to transport people
  • Keep med times and meal times and bedtimes as structured, on-time and normal as you can. This will keep your loved one calm and functioning as well as possible
  • If your loved one moves slowly, consider buying a used wheelchair so that you can move them around easier if you have to change locations often or at the last minute
  • Know where special needs shelters are in your area
  • If you have pets–Google pet friendly hotels along your escape route. Call early–pet friendly hotels get filled fast
  • Take important docs including living wills and DPOA
  • Prepare for stress related issues to come up. Stress is hard on a healthy body for reeks havoc on people with neurological diseases. Too much information to process can overload their delicate neurons so expect their speech, motor skills, etc. to not funciton as well
  • Stay together. You are their lifeline. Don’t get separated in a crowd. Refuse to leave them.
  • Consider a medical alert bracelet or necklace with ID information–especially for those iwth dementia or Alzhiemer’s
  • Even if your loved one isn’t in adult diapers, you might want to keep some on hand for this kind of emergency
  • Stay focused. Getting everyone to safety will take your full attention and physical endurance.
  • Keep a sense of humor. As difficult–and scary as all this is, there’s nothing more reassuring that everything will be all right than a smile, a hug, or a laugh when things get crazy.

As long as you make it out of your emergency situation with those you love–and everyone is safe–that’s all that matters.

Take the time to prepare now. So many people depend on you as a caregiver–you’re their lifeline.

Do all you can to ensure the safety of those who are vulnerable–those you love.

And take it from my friend who is safe and dry in a hotel (with his whole gang, (dogs and cats and moms and dads, and mom-in-law, and wife and kids) somewhere deep in the heart of Texas–leave early!

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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Most caregivers I know are rsick of being told to take care of themselves.

It’s not that they don’t appreciate the advice, but I’m sure they feel like saying something along the lines of…

If you’d like to come over and give me a long weekend off, I’d be glad to take care of myself.

Or

And, how do you propose I do that on the energy of an anemic sloth?

Taking care of yourself takes time, energy, sometimes money, and resources.

These are commodities that most caregivers don’t have a lot of.

How do you get energy if you don’t have energy?

Ask yourself, what’s draining me? I mean other than 24/7 care and talking circles with a person who has Alzheimer’s. Mental energy drainers, crazy makers (meaning your relatives and other uninformed people) drain more energy than the physical work you do.

Make a list of crazy makers–from the irritating neighbor who fusses at you because your dog barks (at three in the afternoon) to the unhelpful, disinterested nurse who refuses to simply call in a prescription for your mom even though you know she has the same condition as the last time she went to the doctor.

Now that you have your crazy maker list you’ll hear an alarm going off in your head the next time you’re dealing with them–you’ll be able to detach before your emotions get tangled in with their chaos. Limit the amount of conversation you have with crazy makers. Get in, get out, that’s my motto.

It takes energy to get energy.

I hate this one, but it’s like exercise. You can’t wait until you feel like exercising or you’ll never do it.

You exercise in order to feel like exercising. Shut off brain. Don’t over think. Just grumble and move, grumble and move. Ten minutes in, and those lovely endorphins just might kick in. Tell yourself you can quit in ten minutes. I bet you’ll want to continue. Most days. Some days.

Are you really physically tired?

You might not be.

Caregivers suffer from monotony. Most of their days are too predictable. It’s boring. It’s not stimulating. You’re still young, healthy and your brain and body needs activity. You’re probably acting like your elder loved one–like you’re 87 with arthritis.

Mentally separate yourself from your loved one. Not in a mean way, but realize that you are 20, 30 years younger. Move like it. Talk like it. Don’t let an atmosphere of depression pull you down. 

Research has shown that if you’re tired, it may be because the other side of your brain needs stimulating.

If you’re physically tired, you might need mental stimulation–a game of computer solitaire, a crossword puzzle, learn a language, have a conversation with someone who challenges you. That way, you’re using the other side of your brain–the side that’s been lethargic.

If you’ve been working through a problem in your head, (even having an argument, figuring out care arrangements, or worrying about something), then you may need a physical activity–clean out a closet, wash the car, scrub out the frig. Your body is yearning to move.

Do you know why we yawn?

It’s not just because we’re tired. It’s that our breathing slows when we’re tired and we’re not getting enough oxygen. Our body triggers us to yawn so we’ll take in a deep breath and fill up with oxygen. Cool, huh? Even our body knows what we need. Maybe you need to “yawn,” metaphorically that is, and get some life sustaining oxygen flowing again.

So, brass tacks here’s how to take care of yourself when you don’t want to be told to take care of yourself:  

  • Tell those do-gooders “You should take care of yourself” folks to back off! Uhless they’re willing to anty up, it’s not fair to just tell you what to do and not help.
  • Name those crazy makers and decrease how much time you spend with them.
  • Do one thing you’ve been avoiding–calling the bank, deworming the dog–nothing zaps energy like dreading something
  • WALK or STRETCH for ten minutes. Not because you feel like it. Gripe all the way through, I don’t care. Just do it!
  • Do you know how much energy it takes to hold in our emotions? Go to your car, shut the door and have an imaginary tell-off session. Write a really nasty letter. Scream.
  • After you’ve said all those cruel and probably deserved terrible things, it’s time to pick your words and confront someone who’s really been bugging you. Start with, “When you ____________, I feel ___________. Then offer a solution. Next time, please ______________.  Then walk away. Refuse to get into an argument.  As scary as this is, this little script can save your life. Unresolved emotions contribute to heart disease, so unplug those arteries and stand up for yourself!
  • Create a time structure you can live with. I know people who get up at 6:00 because their loved one needs a pill. At six a.m.? I’d much rather be on a 8, 12, 4, 8 schedule. You’re the caregiver and consistency is important, but you should decide and dictate the care. Not them. Eating at the same time, taking their meds, and going to bed at the same time is important for everyone–but make it live-able for you.
  • Ask yourself each day: “What was the best part of my day?” It can something small, like having cream for your coffee. Most of the time for me, it has to do with nature–a cardinal that bathed in the birdbath outside my kitchen window. It might be a thank you or a compliment, a surprisingly helpful bank teller. Once you start this, then you’ll want something to be thankful for–you’ll be looking out for it–creating it. Gratitude is good for the soul.

That’s it. Nothing big or earth shattering:

Tell those do-gooders to back off. Decrease crazy maker time, walk and stretch, create a schedule you can live with, deal with something you’ve been dreading, tell someone how you feel and offer a solution, and be grateful. That’s the beginning of a great life.

Also know that if you’re changing gears–if your loved one has just taken another downward step–their Alzheimer’s has gotten worse, they don’t know you anymore, you think you’re entering into the end of life–or if your’e grieving–then chuck all this well meaning advice and survive. Your soul is aching. Do the best you can. I cared for my mom until the end, and I know that there are times when you can’t do anything but breathe–and do what is at hand. No guilt. Get through.

Caregiving has its challenges, but seeking answers to these challenges might just improve your life.

~Carol D. O’Dell

Author of 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 Kunati Publishing

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Caregivers,

Do you have a place to go?

A sanctuary?

If not, it may be a big part as to why you’re stressed and resentful.

Caregiving invades your space, your head, your time–you don’t always get to say when you’re needed.

I pulled many a “late night shift” with my mom.

My mother had Alzheimer’s and Parkinson’s and not only did she have Sundowning, a condition in which people with Alzheimer’s get more aggitated and have more energy as the sun goes down–and on into the night, but she simply didn’t need much sleep–or her body wouldn’t let her sleep. (Here’s a post I wrote about my experience with sundowning).

It’s not like we could make it up during the day.

I was dragging. That made me miserable, fussy, and I tended to overeat. Why? Because studies have now shown that obesity is linked with lack of sleep. We tend to munch all day because it gives us something to do, causes our brains to perk up, and since sugar is almost always involved, we’re pumping ourselves up like we’re climbing the highest point of a rollercoaster–and then plummeting to exhaustion.

Maybe what you need isn’t to just lie down. 

It’s a renewal of your spirit you’re hungry and longing for.

You don’t have to be religious to need a sanctuary.

I love that I happen to live in a bird sanctuary area–the Timucuan Preserve. I love the thought that animals are held as sacred and that an area is designated for them.

But shouldn’t we humans create our own sanctuaries? What exactly is a sanctuary?

The word, “sanctuary” means:

Source: Webster’s Revised Unabridged Dictionary (1913) –The spelling has changed since then.

Sanctuary\Sanc"tu*a*ry\, n.; pl. Sanctuaries. [OE. seintuarie, OF. saintuaire, F. sanctuaire, fr. L. sanctuarium, from sanctus sacred, holy. See Saint.]
   A sacred place; a consecrated spot; a holy and inviolable
   site.
Two of the definitions include:
c) A house consecrated to the worship of God; a place where
       divine service is performed; a church, temple, or other
       place of worship. A place to keep sacred objects.
   (d) A sacred and inviolable asylum; a place of refuge and
       protection; shelter; refuge; protection.
Operative words: Refuge. Sacred. Shelter. Protection.

How to Create a Sanctuary:

What is sacred or holy to you?

  • Gather a few objects–a photo, seashells, stones, your mother’s broach, your dad’s pocket watch, your baby picture.
  • Grab a basket or a box and walk around your home and hard. Gather anything that interests you. Your sacred objects will change over time. Just get it rolling for now.

Find a place:

  • Where in your home or yard feels “safe?”
  • Where can you have some privacy? Where can you relax?
  • Place a table, a desk, a chair, a cover at this place. If it’s outside then create a box of your sacred items that you can carry out with you.
  • You might also want to include a journal and pen, micro-cassette recorder, a drawing pad, candles, a rosary–any object that helps you figure out life.
  • Go frivolous~ don’t think a sanctuary is all serious! Take your ipod along. Dance! Paint your toenails and read a magazine! Navel gaze. You may just need some extended down time–staring into space.
  • There are no rules. Do what you feel like doing. We’re taught not to trust our feelings. That if we got to do what we felt like, we’d all be drug addicts, cheaters who eat nothing but Oreos. Trust yourself. Do what feels right. Sleep. Stare. Rant. Cry. Sleep some more.
  • Your sanctuary is off limits to everyone else. Make your boundaries. No interruptions. No phone calls. Unless there’s blood and lots of it–you are not to be called away from your most important work–taking care of you.
  • You’ll be surprised, but your family and friends will respect your space–if you do. This is a great example for your children.
  • Don’t expect “results.”
  • This isn’t a magic box. It’s a place to rest or even to rejuvinate. Recenter. Calm down. Work things out. Place no expectations. This isn’t like Weight Watchers for the soul. You don’t have to weigh in and measure if you’ve gained or lost since last week. Just be.
  • You may need to use your sanctuary to work out your anger, hurt, and resentment. One thing I do when I’m really upset is to write it all down on scraps of paper, say it outloud, and then burn it. It helps to watch your anger turn to ash.

Pick a Sanctuary Location:

  • Some people like clearing out a closet and placing a chair, pillows, and a small table and light in their “prayer closet.” Oprah recently featured a sanctuary closet that was really decked out. 
  • Others like to go outside–they hide away in the nook of the yard and get the benefit of nature to heal them.
  • One friend keeps her “special box” she calls it in the car. She literally walks out the door and goes and sits in her car. Her family is less likely to find her there and she feels safe and cocooned. She can scream, cry or laugh in her sound-proof sanctuary.
  • For some, it’s in the bathroom. They retreat eat night to the tub–they keep candles, soaps, and a journal on hand. They know that being naked will most likely keep people away! Hey! Whatever works!
  • Be like my cat and change your sanctuary every once in a while.

Cats are great to observe. They seem to make their spots seem sacred. My cat picks a spot and goes there after breakfast each morning. He gives himself a luxurious bath, folds in his little paws and I swear, if cats could pray, I’d think he was praying. Then, he takes a nap.

This week, his spot is under my birth grandmother’s rocking chair in my bedroom. He tends to pick a spot and goes there for 3-4 weeks before picking another spot. Recently, it’s been in the back of my closet–that’s when he doesn’t want to be found. A few weeks ago, it was on a chair next to the dining room windows so he could enjoy the sun. I knew where he was, but he’s also quiet and hidden away enough to not invite attention. Smart cat.

What Do I Do in My Sanctuary?

First, let’s address what you DON’T do.

  • You don’t take care of anybody but you.
  • You don’t stay busy just to avoid what’s bothering you.
  • You don’t have your thoughts constantly interrupted with the chatter of life.
  • You don’t allow yourself to be bombarded with the demands of every day life.

This is What You DO:

Rest. Think. Imagine. Work out hurts. Cry. Zone out. Learn (maybe take a book?) Find your joy.

If it feels odd at first because you’ve never done anything like this, then let it feel odd. Your sanctuary practice will be even more necessary at the end of your loved one’s life–and especially during your time of grief. Create this space now so that you’ll have a place to run to when you really need it.

Like my cat, I change my locale every once in a while.

Right now, it’s on my back porch on my parent’s glider (they had it since I was adopted in 1965). I have a stack of books on one arm, and I recently bought a big cushion–in case I get sleepy. About 9am you’ll find me there with my 2nd cup of coffee, my journal, a few magazines, a no doubt, a couple of dogs by my feet.

I’m a Guy and This Sounds Lame:

Does it?

My daddy had a sanctuary. He called it a garage. He built it himself. He left for his garage every morning after breakfast (he was retired at this point) and after his game shows. He putzed, worked on a broken lamp, put in a small bathroom. He listened to talk radio. For the most part, he was alone–although a few friends would come and visit. Mama and I came down but never really stayed long. It felt like we were intruding.

He’d come back to the house with a smile. He’d had his time to himself. He smelled of sawdust and linseed oil–and peanuts and Coke he kept in a cooler to sustain him throughout the day. He came back relaxed because he allowed himself this break. He didn’t have to listen to Mama nag or me talk incessantly. He came back ready to be a dad and husband. Smart man.

Caregiving stress is a real issue with real ramifications to your health and realtionships. Sometimes we unknowingly contribute to our own stress by always being on call. Sometimes it’s a power thing we’re unaware of, sometimes it’s fear, sometimes it’s just a plain ole’ bad habit we can’t figure out how to break.

You need a sanctuary–caregiving or not.

You need to know that the world won’t fall apart because you take a half an hour and pull inward.

Like Daddy, you’ll come back refreshed.

~Carol D. O’Dell

Author of 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

Kunati Publishers, www.kunati.com/mothering

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I spoke at Haven Hospice in Gainesville, Florida yesterday–and the speaker before me was Dr. Slayton who is also a caregiver to his 87 year old father. He spoke of the “Out of Town Hero Syndrome.”

Everyone knew what that was–it’s when out of town relatives swoop in town and begin to tell YOU how to care give.

They come once or twice a year (thank goodness, not more) and rearrange everything from your medicine cabinet to your car’s glove compartment while proceeding to tell you (in subtle and not so subtle back stabs) how you could, should give better care–to mom or dad.

You’re there 365 days a year. They’re there for 10.

You’re nice at first. Keep peace, you tell yourself…but by day three you’re about to blow a gasket.

If your loved one has to go to the doctor or is in the hospital or in hospice and it’s near the end–then it’s ten times worse. They run the show. The doctors and nurses speak to them. Especially if they’re an older sibling–then you’re really in for it.

By the time they leave you can barely find your own socks.

You’re angry, frustrated–and worse–your confidence has been undermined.

You start to doubt yourself.

You just want to quit. Fine then–take mom–take dad.

“Do it all yourself and I’ll come back this time next year and boss YOU around for ten days.”

That’s what you’d like to say.

On top of that–your mom or dad like them MORE.

They get the smiles, holding hands, pleasantries you haven’t seen in months–they sit at the table and gab like you do this every night and you feel like such a hypocrite. They’re all in the livingroom talking after dinner–and where are you?

Loading the dishwasher.

I didn’t have siblings, but I experienced this with several relatives who came into see mom–twice–once each in more than two years.

I went off for the day to give them time alone and when I had come home this person (no names) had reorganized my pantry and all my kitchen cabinets. She took me in there by the hand and showed me everything she had done and explained why her system should work better. I had to stand there like a ten year old in trouble and agree, yes, her system was better and I was a piece of …well, you know.

I was so stressed, angry and nervous by the time she left I thought I’d collapse in a heap on the floor when she pulled out of the driveway. On top of that, I knew my mother had complained her head off about me–not taking her to church, drinking wine (my mother was a fundamentalist minister), watching movies with curse words, letting my daughters wear those short shorts…you name it.

The next time this happened was with a good friend of mine. My mother ate her up like she was homemade vanilla ice cream. They chatted and laughed–my friend washed my mother’s hair and did her nails.

Made me sick.

I had asked my friend to come down to help me and this felt like betrayal. I know she didn’t mean to but that’s how it felt.

I felt judged–and poorly lacking.

Mother hadn’t said a kind word to me in weeks and now she was a geyser of compliments.

Then I heard them whispering. Mother was crying (fake crying) and saying she wished I were sweeter, kinder, more patient, that she didn’t know what she had done to make me act so cold to her.

My friend came out and a very concerned voice told me I needed to make up with my mother and forgive her.

I thought my head would split open. I felt betrayed by everyone.

Mother was up to her old manipulation tricks–and I knew this full well having experienced it countless time in forty years.

I told my friend she really had no idea what was really going on here and that I needed her to respect and trust me.

Later, she apologized. Her father got Alzheimer’s and she dealt with her own family issues. She really didn’t have anything to apologize for. I knew how mother had played her, but I understood.

I share all this with you to say this about relatives in town or out who make you question yourself:

Know deep inside you are a good person–a good daughter, son, spouse–and let no one shake you on this

Stop worrying about what other people think about you and your caregiving.

It’s none of your business what others think of you. (How freeing is that?!?)

You’re care giving because you believe it’s the right thing to do. You have to give care the way you can–the way you can be consistent, they way that’s right for you and your loved one.

Stand firm on this and don’t listen to other’s opinions. 

Unless they have done this for as long as you have, they can’t possibly comprehend the level of sacrifice, committment, love, tenacity, and exhaustion you’ve endured. Caregiving is a marathon not a sprint.

You may feel yourself pulling away from people.

That’s part of caregiving.

You’ll naturally pull in–for good and not so good reasons.

You’ll get tired of explaining yourself.

You’ll get tired of trying to be nice to people.

You’ll get tired of feeling that everything you do is up for scrutiny.

You’ll get strong and stop needing others to validate you or what you’re doing.

That’s the bottom line.

Your relatives, friends and neighbors will intimidate you just so far and then you’ll find your backbone and stand your ground.

This is one of the best lessons of caregiving that can change you and how you deal with others for the rest of your life.

You will become strong, independent, and do what you need to do and you won’t give a rip what others think. They have no idea.

The anger and hurt will dissapte. In time.

These situations and people that threaten you will give you a gift–you’ll find your own confidence.

You’ll be in your own quiet center.

~Carol D. O’Dell

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

www.mothering-mother.com

Kunati Publishing, www.kunati.com/caroldodell

Family Advisor on www.Caring.com

Syndicated blog on www.OpentoHope.com

 

 

 

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Do you need to be needed?

Carl Jung called it, “The Wounded Healer.”

Caregivers, whether they come by it willingly or are drug into their caregivingroles, become accustomed to being needed. It’s comforting  and satisfying to know that you have a purpose.

But what do you mean when you say, “wounded healer?”  Is that a bad thing?

Wounded healer is an archetypal personality type that psychologist Carl Jung used to describe the relationship between analyst and patient–why a person might go into the psychology/counseling field.

No, it’s not a bad thing. I’m not sure there would be firemen, doctors, nurses, pastors, or teachers if there life experiences hadn’t given them a reason to step into these professions–to give back or make a difference.

I know good and well I wrote Mothering Mother out of a sense of need. I needed insight and direction. I needed to know how to step into this new role as a daughter who cares for her mother. I needed to examine aspects of the soul, my beliefs, and the ramifications on my relationships.

What would caregiving do to me?

I couldn’t find the answer, so I had to write my way through.

Jung had some theories as to why people choose “needing” professions:

  • The wounded healing is consciously aware of his own personal wounds and can be empathetic toward the person in need. 
  • The care receiver/patient also possesses an “inner healer” he is unaware of, but it’s there to help guide him and lead him to wholeness. 
  • The care giver–and care receiver (wounded healer and patient) are a good fit for each other. They need each other, in many ways.
  • They intersect at that point of need and each derives something from their relationship or experience. 

Jung also noted that you have to be careful and make sure that this type of agreement or relationship remains a healthy exchange for both people. He referred tho this as depth psychology and cautioned that the caregiver could potentially have his old wounds reopened, or get caught in a vicious cycle. He also cautioned against the ego taking over and the caregiver getting hooked on the power or the needing and falling into an an inflated ego.

For most caregivers, I fear that you’ll wind up creating more and more “needing” scenarios and begin to only feel like yourself when someone is in need or crisis mode.

It’s a big let down after your loved ones passes or goes into a care facility. You feel useless. You thought you longed for freedom but you feel lost. Your days were defined for you and now…what do you do with yourself? Who are you if not someone who cares for others?

You like that you’re good at something. You’re proud of the fact that you’re a good organizer, that you can spout off medical jargon, that you’re the one everyone comes to for a diagnosis. You actually own your own copy of Grey’s Anatomy, and I don’t mean the DVD collection of McDreamy and McSteamy.

Jung derives the term “wounded healer” from the ancient Greek legend of Asclepius, a physician who in built a sanctuary at Epidaurus in order to treat others. Spiritual writer Henri Nouwen also wrote a book with the same title. The Greek Myth of Chiron is also used to illustrate the archetype of the Wounded Healer so this whole deal about being needed and what it does to you isn’t new.

Realize that you might have codependency tendencies.

What is codependency?

NIMH, the National Institute of Mental Health defines it as: “Co-dependency is a learned behavior that can be passed down from one generation to another. It is an emotional and behavioral condition that affects an individual’s ability to have a healthy, mutually satisfying relationship. It is also known as “relationship addiction” because people with codependency often form or maintain relationships that are one-sided, emotionally destructive and/or abusive.”

Oh, that’s not me. I’m not that bad. I’m not aiding an alcoholic or hiding an abuser.

Neither was I, but I did see aspects of control issues and “only I can make her happy” in my caregiving and even parenting years. A little of this stuff is toxic.

One book that changed millions of lives was Melodie Beattie’s Codependent No More. It brought this subject out of the counselor’s office and allowed lay people to analyze their behavior and seek help.

So how do you care give without taking it too far?

  • Be aware. Realize when you’ve tied your super-caregiver cape on, when you’re deriving more power or satisfaction out of your role than you probably should have–when you push others away or start to feel oddly territorial. Awareness is key.
  • Stop being so nice! Niceness is an illness. Do what’s right, not necessarily what’s nice.
  • Trust that what is right for you is right for those you love.
  • There is a time to extend yourself for others, but make sure there’s a cut off date.
  • If you are going to have to care giver for a long time, then make a plan so that your whole life and health and relationships aren’t derailed indefinitely.
  • Give up perfectionism. Allow others to help. Ask, demand help–and then accept it. If it’s difficult, then let one thing go at a time. Let one job be done by someone else for awhile–and go from there.
  • Ask a friend to be honest and let you know when you’re in “need to be needed mode.”
  • Laugh at yourself when you “do it again.” Don’t use this as another thing to feel guilty about. Break it down into manageable chunks.

It comes with the territory, but it’s not all bad news.

Recent studies on happiness says that people derive more joy out of being needed and having purpose than they do out of having money. Happiness seems to be based on treasured experiences, spirituality, a sense of family, and meaningful work. It’s also lowest during mid-life when you thought if you worked hard enough, made enough money, and raised decent kids, you’d be happy–suddenly you realize that while maybe you got some of that, much of life is beyond your control. You have to dig deeper, look beyond life’s trappings to find a deeper sense of joy.

So see? If you just don’t go crazy with this needing thing, it could actually be good for you. Caregiving certainly has aspects of experiences, purpose, family, and spirituality.

Balance, grasshopper. Balance.

~Carol D. O’Dell

Check out my book on Amazon: Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

www.mothering-mother.com

Syndicated blog at www.hopethrives.org

Family advisor at www.Caring.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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You can’t watch someone you love struggle with a disease and not be affected.

But what can you do?

As a caregiver, family member or friend, you can’t make it go away.

Alzheimer’s and Parkinson’s are two debilitating diseases that are slow and grueling and take a toll on people’s spirits, and affects everyone around them. For some, they turn into fighters, but even fighters get tired. 

You can’t offer your bone marrow or donate a kidney–you feel helpless to help.

And yet, there’s a group of family and friends who are doing something phenomenal to raise funds and awareness to fight these two monster diseases.

It’s called:

“10 Mountains – 10 Years” – A Quest for the Cure.

 

 

One decade long, 44 ½ vertical miles high, 7 countries, 6 continents and 2 diseases.

The Regulars” an international team of climbers has begun to mount what may very well become the grandest, most physically demanding, and exciting campaign to raise awareness and funds needed to help find cures for Alzheimer’s and Parkinson’s disease.

“This years team has the most dynamic line up to date”, said team captain Vincent Roland Simone. “The team will range from inexperienced to experienced, and from 11 years old to 50 years old. In the end I honestly believe regular people will play a big part in conquering these diseases”.

In 2006 “the Regulars” began their epic on Mont Blanc (France) the highest peak in continental Europe. Collectively their route around the globe from Mont Blanc to Everest 2015 will be named a “A Trail called Hope”. Each year the expeditions will be attempted in honor of the collective 30 million family’s world wide who have been directly impacted by these diseases, the care givers who ease the struggle of those affected, and the scientists who diligently battle to find a cure. A victory in reaching these summits is symbolic of overcoming the many challenging milestones in medical research and funding needed to find the cause and a cure for Alzheimer’s disease & Parkinson’s disease.

According to the Alzheimer’s Association, “an estimated 5 million Americans have Alzheimer’s disease.” Unless a cure is found, “by 2050 the number of individuals with Alzheimer’s could range from 11.3 million to 16 million.”

None of these figures account for people affected in other countries. There is no cure.

Today more than six million people worldwide are living with Parkinson’s disease, and 40% of those people are under the age of sixty. Currently one of the youngest people diagnosed was 8 years old at the time of diagnosis. Over the course of this year 60,000 new cases will be diagnosed. There is also no cure for Parkinson’s.

The “10 Mountains – 10 Years” (a quest for the cure) project is unique in a number of other ways:

• Supporting two major high profile organizations: the

 

 

 

Alzheimer’s Association & the Michael J. Fox Foundation

• The first climbing / awareness / fund raising event to span a decade, climb more than 44-1/2 miles into the sky, endeavor to reach 10 mountain summits in 7 countries, on 6 continents, in an effort to help conquer 2 diseases.

• A yearly opportunity for people, media, corporations, scientists, and governments to revisit the topic of each disease. The 10/10 project is a look back into the past year to assess the strides made by all of the above, it is also a look ahead to goals being set in research for the coming year.

• Ultimately, it is a story of how a small group of

 

 

regular people can decide that they can make a difference – great or small – then follow through with their personal promise to make it happen.

 

This year on Independence Day

 

 

 (July 4, 2008) four of “the Regulars” returning team mates will join Eileen Colon /Bencivengo on

“A Trail Called Hope – III – Mount Hood”

Collectively she will join additional team mates from Texas, Colorado, New York, California and England on the mountain in hopes of reaching the summit and helping to raise awareness for the cures. One team mate (a retired fire fighter turned photographer) residing in Colorado suffers from Young Onset Parkinson’s and will join the Regulars on the Mount Hood summit climb in hopes of inspiring others with Parkinson’s and or Alzheimer’s to never give up on themselves.

The team for “A Trail Called Hope III – Mount Hood”, which is third in a set of ten mountain climbing expedition will be the following:

 

 

 

Team Captain:

 

 

 

Vincent Roland Simone (41) – New York.

Team:

Eileen Colon / Bencivengo (50) – New Jersey

Eric Buzzetto (27) – New York

Daniel Simone (40) – New York

Tyler Simone (11) – New York

Brett Curtis (32) – United Kingdom

Jennifer Yee (24) – California

Matthew Jimenez (21) – Texas

Troy Parker (46) – Colorado

Cy Maramangalam (28) – New Jersey

In 2007 Jennifer Yee an independent film producer and owner of Back Light Productions joined “the Regulars” team. Backlight Productions began to film a multi part film documentary in September 2007. The documentary will not only follow the efforts of “the Regulars” over the course of their decade-long mountain adventures in raising awareness and funds, but also document the progress and setbacks made in Alzheimer’s and Parkinson’s during the coming decade. The first release will focus on the events surrounding the Mount Hood Climb.

***

I recently talked with Eileen Colon, one of the newest members who’s putting on a fundraiser this Saturday, May 17th to raise funds for their upcoming climb. I wanted to know what (or who) inspired her, and why, at 50 years old is she climbing her first (of many) mountains?

Here’s our discussion:

What was your first encounter with Parkinson’s?

My first encounter with Parkinson’s Disease came when my sister-in-laws father was diagnosed with it late in his life and passed from it.
There are two wonderful friends of mine that I met through Myspace that have Young Onset Parkinson’s Disease.
I have formed a team “Jim’s Gems” for two years now and have taken them to NY for the Unity Walk. I did this in honor of my good friend Jim who has the disease. My other good friend, Ken Glowienke, from Focus on A Cure for Parkinson’s, also has YOPD. I met him for the first time last year at the Unity Walk. He flew in from Chicago to be part of my team. Our friendship is one I cherish with all of my heart. He has the most beautiful and loving wife and I share a special friendship with her also. Jim and I train in the martial arts under the same association so we are always thrown together at tournaments and special events. I cherish my friendship with him also. He was my inspiration in becoming involved in the Parkinson’s community on Myspace and for bringing Enzo to me from the Regulars.
Who all has been affected by Parkinson’s in your life and how has their struggle made you look at your own life?  My mother had Parkinson’s for close to 15 years, and so I’m quite familiar with the issues that arise. My mother always had a tenacious spirit, but I found that Parkinson’s made her even more determined to be independent for as long as possible. Is this true among those you know who struggle with PD?
I look at life very differently now. I make myself walk in there shoes. I fight for every one I know with this disease plus the ones I don’t know. I take my role as an advocate very seriously. I want to ensure my own children will not be faced with this. I posted a blog about the heart of an advocate on my Myspace page. It says it all for me.
I walk and now climb, fundraise and draw awareness for those that can’t. As long as God gives me the strength to do this, I will. And when the strength to physically do this runs out I will still advocate in other ways. I look at life as a gift. Each day that I wake up I thank God for giving me this day to continue being a good mother to my children and for still being able to advocate.
The two men I speak of have the most tenacious spirit and determination to beat this disease that I have ever seen. There are so many others that I don’t know quite as personal who also fight this fight with there heads held high. As we hope for a cure, and it seems so close, there fight becomes stronger and stronger. They are true inspirations in my life. They push me to help get them closer to a cure. They are my heroes.
Tell me about your fundraise on May 17th and what are your goals?
My fundraiser this Saturday is part of my efforts to raise funds and awareness for Alzheimer’s and Parkinson’s disease in conjunction with my team The Regulars. It’s hard to say how much I will raise. It is an Open House for my karate studio also and it will be advertised in the paper. So it depends on how many people show up over the course of the day. I have been in karate all week selling Raffle Tickets for a Chinese Auction I have going on.
How did the “Ten Mountains in Ten Years Project” get started?
Enzo Simone from Amawalk, NY divised the 10 mountains 10years project. His mother has Alzheimer’s and his father-in-law has Parkinson’s. I had the pleasure of meeting them both at the Unity Walk in April as Enzo came in to join me with my team.
The mountains:
Mount Blanc – France
Cotopaxi/Chimborazo – Ecuador
Mount Hood/Mount Shasta – USA
Aconcagua – Argentina
Kilimanjaro – Tanzania, Africa
Mount McKinley – Alaska
Mount Elbrus – Russia
Cho Oyo – Khumbu Himalaya Nepal/Tibet
Vinson Massif – Antartica
Mount Everest – Himalaya, Nepal/Tibet
How’s your training going?

My training is going well. I threw on my backpack for the first time on Mother’s Day and went for a hike. It was a challenge but I eventually got a feel for it. I train almost every day. Six days a week but now I am training everyday.
Can anyone join in at any time?
Anyone can jump on board at any time to be part of the Regulars Street Team. However, the climbs are planned and you either receive an invitation from Enzo or you send him a message saying you would like to join one of his climbs.
I received “The Call” on Myspace because we were friends and he was impressed by my advocacy work on my other causes. I accepted and my journey began.
How has this changed your life already?
I challenge my body on a daily basis. I was an athlete from the time I was in third grade. When I married at 22 and had my first son, my atheticism slowed down. Occassionally exercising. Life dictated other things and I had three more children and never had time. When myone son joined karate it sparked my interest. I eventually signed on and have been training in the martial arts for over eight years. I am a second degree black belt. Testing is grueling so a lot of preparation goes into getting to that point. I have walked 60 miles in three days for Breast Cancer, two years in a row. When Enzo asked to join his team I doubted myself for a second or two and then went in head first to get ready.
It is very challenging to train everyday and still be mom and run a household. I feel my boys are inspired by me. They see there mom going out there and proving at my age, 50, anything is possible. And it is. So I look at my boys and I step up to the plate and do this for them.
***
I have to say, I am impressed and humbled by this small band of “regular people” and their devotion to those they love and their fight against the diseases that have so deeply effected their lives and the lives of those they love. This is love in action.
Anyone out there who feels stuck in their own life, who is also affected by this disease–either as a caregiver, friend, or person struggling with this disease, I hope you’ll consider contributing to this cause–and cure.
We all long to be a part of something that makes a difference, and Alzheimer’s and Parkinson’s take so much control from our lives and our bodies. By finding a way to give–or help spread this message (please feel free to cut and paste and send this blog to anyone and everyone), you’ll get a little bit of control back. You’ll feel that you contributed your grain of sand–and each grain helps tip that scale.
As a small added incentive, if you do happen to purchase my book, Mothering Mother: either on Amazon, Barnes & Noble.com, Target.com, or order it from your local bookstores, between now and July 4th, email me at writecarol@comcast.net to say you’ve done so, and I’ll donate two dollars per book to this cause.
Mothering Mother was written in “real time” during the last three years of my mother’s life. It tells the truth about caregiving and family life. It doesn’t just focus on the bleakness of the situation, but also incorprates the hilarious moments, the mother-daughter fights, the contempletive thoughts of life, and the nitty-gritty details that often get glossed over. I wrote it because I felt so alone and isolated. I needed something for my soul, my intellect, my creativity–something that incorporated what Parkinson’s and Alzheimer’s does to relationships and how you see yourself. I hope it touches it lives of many who find themselves on a similar journey.
My mother suffered with Parkinson’s for 15 years–and I became her companion, I stood in the doorway as she trembled, as she tried so very hard to will her body to move.
During the last three years of her life, she moved in with my family and me, and then she developed Alzheimer’s (I suspect it was there before and I was too much in denial and exhaustion to recognize it). I know too well what these disease does to your life, your head, your heart, your faith, and your spirit.
None of us could make it without our support.
I hope you’ll find a way to spread the word, give, and cheer on this courageous team.
available on Amazon or request it at your favorite bookstore
Family Advisor at www.Caring.com

Syndicated Blog at www.OpentoHope.com

 

For further information please visit the Regulars website:

 

 

or http://www.myspace.com/10mountains10years or

http://10mountains10years.blogspot.com/

For the Michael J. Fox Foundations for Parkinson’s Research.

P.O. Box 4777 New York, NY 10163

(212) 509-0995 ext. 204

 

http://www.michaeljfox.org

 

 

and for Team Fox visit www.TeamFox.org

Donations to the Alzheimer’s Association & the Michael J. Fox Foundation in honor of the

Regulars “10 Mountains – 10 Years (A Quest for the Cure)” project:

http://www.theRegulars.org

Once on the Regulars Website please click the page entitled “Donate Toward Research”

# # #
 

 

 

 

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There’s a new kind of caregiver out there.

She (or he) is a savvy caregiver, isn’t a martyr, and doesn’t look defeated (all the time).

She (I use the feminine pronoun to apply to everyone) has her act together (in some respects) and isn’t going to let her life and her plans be completely derailed–and yet she loves her family, her elders, her children, and embraces the fact that she’s an integral part of their life.

How does she do it all?

It’s not about being perfect.

In part, it’s about being prepared, looking at the big picture, and then breaking down the day-to-day components into manageable bites.

It’s also about choosing to care-give.

This isn’t a passive thing–and yes, it may have come to you sideways, unexpected or by default, but you didn’t have to say yes. Everyday people place their family members in care facilities, sometimes out of necessity and sometimes by refusing to give them any level of care.

Realize that you are choosing to care-give. That sense of choice also provides you with purpose and direction. It means you’re not a victim.

Preparedness (Boy Scouts, move over) and How to Care-give Not to Kill Yourself

  • She’s (the healthy caregiver) gathered the necessary info and has it at her fingertips–Living Wills (The Five Wishes is the one I highly suggest) DNR orders, if necessary, insurance info and numbers, notes made about recent doctor appts. or hospitalizations, and medicine info.
  • She uses her calendar and to-do lists efficiently, but she’s not a robot. Some days you chuck it all and love on the person who needs it the most (that may be yourself).
  • She has her down days, her pajama days, and she knows that balance isn’t about doing a little every day–sometimes there are seasons–seasons of quiet, seasons of chaos, and seasons of grief.
  • She’s learned not to let every little thing rial her. She’s experienced enough in life to know what’s worth freaking out about (which is very little) and what isn’t (which is most everything else).
  • She listens, repeats back what is said (to a loved one or to a doctor) so that she understands clearly. She takes notes if it’s important or could be necessary later.
  • She can shut it all off and be a woman, get a mani-pedi, be silly and play Prince in the car and sing to the top of her lungs. She doesn’t get sucked into being an elder or being a teen just because she happens to spend a lot of time with either (or both).
  • She prioritizes. Sometimes a home-cooked meal is soothing and rattles her nerves. Sometimes it’s pizza night. She laid down the “shoulda’s, woulda’s, and coulda’s.”
  • She has a great support team–friends to call and gripe to, a gynecologist or family doctor who’s looking out for her, knows the stress she’s under and can monitor her well-being. She relies on her faith, her heart, her circle of support and doesn’t try to go it alone. She considers herself a part of a team and shows a heart of gratitude.
  • She asks for and accepts help. She isn’t interested in being super woman or perfectionist woman. She’s willing to get help and seeks out competent care.
  • She knows she’s vulnerable to stress, so she’s devised a meditation time and exercise time she can manage–it may be only a few minutes a day, but it keeps her sane.  She’s found her own spirituality.
  • She continues to improve her own life–she takes an on line class, a yoga class, is learning how to knit–something that keeps her mind active and learning.
  • She utilizes the internet, finds help, information, and forums that help support her and her caregiving experience.
  • She can see past tomorrow–she knows that caregiving isn’t forever–and she has her own personal plan to move on with her life.
  • She gives herself permission to “lose it” every once in a while–sometimes things just go in the crapper and that isn’t a reflection of her, it’s just life. If she bites someone’s head off, forgets an appointment, bounces a check, she admits her faux pas and lets it go.
  • She values her marriage/intimate relationship and allows sex and intimacy to heal her. Even when she’s exhausted, she finds and asks for ways to connect.
  • She enjoys caregiving–even with all its craziness, caring for a loved one is a privilege. She finds ways to incorporate everyday pleasures to share with her care partner–bird watching from a bedroom window, stopping for ice cream on the way back from the doctor.
  • She takes the time to hold hands.
  • She’s strong enough to make the touch choices, to not be popular, to figure out how to get a doctor, care staff to understand where she’s coming from–and she’s brave enough to know that when death comes, she may be asked to make critical end-of-life decisions, decisions others may disagree with.
  • She’s not afraid of Alzheimer’s or Parkinsons and doesn’t give up in the cruel face of whatever disease her loved ones face. If they forget who she is, she’ll remember for them. If they become uncontrollable, she gets help and doesn’t take it personal.
  • She knows that she may not always be able to do this–and she’s explored other options. She isn’t going to wreck her health or her marriage. She’s planning for those changes now.
  • She knows that caregiving will take her to the bitter edge, and she’s got to figure out how regain the parts of her that get lost in the mix. She knows how hard this is, or will become, but there’s a thread that’s pulling her along, a thread will lead her out and will allow her to continue her journey once caregiving is over.

The new kind of caregiver isn’t a super-mom or super-daughter (or super-son).

They’re real people loving their families. It’s realistic. It’s not martyristic.

The world may not understand the “sacrifices” as some might call them that caregivers (plain ole’ family) makes, but those who have been there understand the love and loyalty that comes in tow.

You don’t do all these things at once, so don’t try to measure up.

You don’t do them to impress anybody.

This is survival. This is how to care-give and not kill yourself in the process.

~Carol D. O’Dell

Author of 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

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If you’ve ever had a bladder infection (the common name for UTIs), then you know how very painful they can be.

If you haven’t, let me describe one for you:

Many times, you don’t realize right off what’s wrong.

You’re edgier than normal. You feel “different down there,” but you’re not sure. Then, you get the frequent urinating thing. Every two minutes.

It begins to be painful, sometimes there’s nothing to urinate but you feel ike you have to. I mean you have to like someone’s holding your foot and you’ve got to jump off a cliff.

You start drinking water like crazy thinking you can dilute it. You hear cranberry juice or pills help, so you run out and buy some and chug down a quart.

No matter what else you think you have to accomplish, you can’t.

You can’t think straight. There are no other thoughts but those of pain. Your lower abdomen aches. You wet your pants, you can’t help it, and you cry as you’re doing it.

You’re in absolute agony, and if you had a gun and could drive yourself to the pharmacy, you would hold it up—for meds. For relief. I’m not kidding.

Even after you get the meds, it takes hours, if not days. You can run a fever. You snap at everybody, if you can even answer them. You find yourself running your fingers through your hair over and over. You avoid everyone.

This is a bladder infection.

The medical world acts like it isn’t a big deal, but I swear, if you had to live this way, and live with this undiagnosed, you might kill someone. They act like the second you get antibiotics it instantaneously goes away. But the overuse of antibiotics carry a consequence, according to the AMA.

Doctors and nurses pooh-pooh you if you’re young.

They think you’re amorous, having too much sex. Wink, wink. While that can be one cause, it’s not the only cause.

Women suffer greatly from UTIs (more than men, in general) in part due to their anatomy—a short urethra. Yeah, blame us.

But I know there are other reasons. Nerves, for one. I always get a bladder infection when something big is about to happen—buying a house, passing a big test. And yes, I’m amorous (and monogamous). That’s a good thing.

UTIs are also serious and can be life threatening if left untreated.

But what would a UTI be like if you couldn’t communicate?

If you had ALS or Alzheimer’s, or some other impairment that kept you from realizing exactly what was going on? What if you didn’t want to tell your daughter, or your nurse that you wet yourself again and again? Would you be shamed? Who wants to change multiple sheets or panties?

Urinary tract infections in the elderly are very, very common.

Particularly in women, and even more so for those who live in a care facility.

And they often go untreated.

Why?

Too many to care for, perhaps. The elder’s inability to describe what’s happening.

UTIs in the elderly or in people with Alzheimer’s can affect not only their health, but can also lead to significant behavioral changes. In fact, if your loved one’s behavior has changed recently, even if they’re male, you should consider the possibility that they could have a UTI.

Just as with me, agitation or nervousness is a big indicator.

The person is concentrating to deal with the pain—there’s nothing left for niceties. Check to see if they’re running a low grade fever, if they’ve soiled their underwear, if they’re more disoriented than usual.  

Elders with Alzheimer’s or Parkinson’s, or other neurological disorders may not remember to urinate—even their bodies and muscles begin to forget, to give off the proper signals, and this leads to a tract infection.

 

Those who have diabetes are also having a higher risk of a UTI because of changes in the immune system. Any disorder that suppresses the immune system raises the risk of a urinary infection.

 

If your male elder has an enlarged prostrate, that can impede urinary flow and cause an infection. So can a kidney stone.

 

People who are catheterized or have tubes placed into the bladder are more prone to urinary tract infection. (This is the highest group of all)

 

Caregivers, You Need to Know the Most Common Urinary Tract Infection Indications:

·       Frequent urination along with the feeling of having to urinate even though there may be very little urine to pass.

·       Nocturia: Need to urinate during the night.

·       Urethritis: Discomfort or pain at the urethral meatus or a burning sensation throughout the urethra with urination (dysuria).

·       Pain in the midline suprapubic region also known as flank pain and is also associated with kidney infections.

·       Pyuria: Pus in the urine or discharge from the urethra.

·       Hematuria: Blood in urine.

·       Pyrexia: Mild fever

·       Cloudy and foul-smelling urine

·       Increased confusion and associated falls are common for elderly patients with UTI.

·       Some urinary tract infections are asymptomatic and difficult to detect.

·       Protein found in the urine.

·        

Kidney Infection Indications:

*                All of the above symptoms plus:  

·       Emesis: Vomiting.

·        Back, side (flank) or groin pain.

·       Abdominal pain or pressure.

·       Shaking chills and high spiking fever.

·       Night sweats.

·       Extreme fatigue.

 

Testing for UTIs is usually a mid-flow urine test, and trust me, that can difficult in and of itself when dealing with an elder loved one.

The treatment for UTIs is antibiotics, but antibiotics have become overused and may not always be effective. Be sure to retest. Elderly individuals, both men and women, are more likely to harbor bacteria in their genitourinary system at any time, which means it just comes with old(er) age.

 

Care facilities are a medical necessity in many families lives for many reasons, but there is a higher incidence in care homes for UTIs. If you can care for your loved one at home for as long as possible and utilize the many community resources available to you—and keep your elder on a consistent routine, your elder is better off.

 

 

But I know how hard this is. I cared for my mother at home for the last three years of her life, and I do know there comes a time when you can’t do any more than you’ve already done.

 

By at least being aware of UTIs and how they present themselves, you can keep your loved one from suffering from this very painful and frustrating ailment.

 

Don’t let your elder suffer in silence.

 

~Carol D. O’Dell is the author of 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 Publisher

 

 

Helpful Websites:

Alzheimer’s TreatmentsLatest news on drugs and treatment- from the Alzheimer’s Association.www.alz.org/treat

Alzheimer’s StagesUnderstand The Stages Of Alzheimers See Our Alzheimer’s Stages Site.Understanding-AlzheimersDisease.com

Alzheimers Nutrition TipsStrategies for Managing Mealtime Family Caregiving Advice & CDswww.LightBridgeHealthcare.com

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