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Archive for the ‘neurological disorders’ Category

CNN reported this week on people with Alzheimer’s who develop violent tendencies. This is the silent story that many families don’t want to talk about.  Family members (aka caregivers) don’t want to expose their loved ones. These respected family members were once doctors, lawyers or indian chiefs, as the saying goes–Alzheimer’s is the great equalizer and doesn’t care who you are, and pays no attention to your socio-economic status

We don’t talk about it. We deny and cover up, and stop inviting friends and extended family over. Spouses lie, make up excuses about the bruises. We’re afraid. We don’t know what comes next–where will they go, what care will they receive, can we even afford this care–and what if they get so bad that even the care facilities don’t want to deal with them?

How long can–or should a family, a spouse, an adult child manage the care of a person with Alzheimer’s, and particularly one who is dangerous?

As I read the article (link below) I saw correlations to my mother.

I remember the day she dug her nails into my arms and screamed for a good five minutes her nose practically mine. She knocked me out of the way to go and catch her imaginary taxi. Her eyes were wild. I knew we were in deep trouble. I knew that as a mother to teenagers who lived in the same house that I could not subject them to this. We had hit our wall.

My mother had Parkinson’s for years. The Alzheimer’s bloomed after she moved in with my family and me. Or perhaps it was there and she hid it–and I played along. I had noticed “signs” of paranoia and anger early on, but I chalked this up to her rather expressive personality.

As the disease took hold, she lost the ability to reason. I couldn’t convince her that my children weren’t stealing the crocheted doll that covered the toilet paper roll on the back of her toilet. I couldn’t convince her those were only squirrels running on her roof, not thieves breaking in night after night. I couldn’t reason with her that no, she couldn’t just wander off and catch a taxi to “go home” in our Florida suburban neighborhood. It always baffled me that long after our names and other useful information left her mind that the word, “taxi” stayed. Mother grew up in Georgia, not New York. I think she maybe rode a taxi twice in her entire life.

I stopped talking about it. People would say, “Just put her in a home.”

Like it’s just that easy. Money concerns–memory disorder units and other types of Alzheimer’s facilities that take this kind of patient cost upwards of $5,000 a month and are not fully covered by Medicare or insurance. Not to mention the emotional hurdles of all the times she begged me to never put her in a home, the worry of who would care for her, see past this, and how in the world do I even find a place and people I can trust?

So I stopped inviting people into our home. I stopped taking her places where she tended to act out. It was random enough that i wasn’t dealing with on a daily basis, but the inability to sit still, to pace, to worry, to fixate on me or on something bizarre–all that was there pretty much of the time. She trashed her room with the veracity of whole fraternity who had chugged a couple of keggers. I felt as if I were living in a lockdown facility and I was the unarmed warden.

My concern was that I’d lose it–my cool, my temper, my ability to control the situation. I could forgive her. She had a disease, that’s all. I had to rise above it. I was the one responsible for my actions. I didn’t want to do something I’d regret. I didn’t want to mis-handle my mother or this situation–or cause harm to my children, my marriage, my life. That tightrope was beyond exhausting.

My mother’s violent stage didn’t last too long. She was spiraling fast. Soon, within a few months, she went from violent to forgetting how to swallow. At that point I chose not to use a feeding tube. I had gone from one impossible decision to even a worse one. The thing about having your loved one at home and not in a care home is that you are 100% responsible for these decisions–and you have to follow them through. You witness the consequences of your decisions. You stand there every day and question yourself a million times. You don’t get to get in your car and leave. You stay.

How bad can it get?

Well, I’m here to tell you that Alzheimer’s can give them super strength and amazing endurance.

What’s the percentage of people with Alzheimer’s who are violent? The stats say 5-10% (National Health Monitor).

It’s a lot like schizophrenia in that most people who suffer with this terrible mental illness are not violent, but those that are get a lot of press, and can indeed, hurt people. It may be small percentage, but it still raises alarms.

Some Behaviors That Accompany Alzheimer’s Are:

  • Pacing,
  • Repeated mumbling words or repeated sounds
  • Ticks, cursing, “ugly” (berated, accusatory, or sexual) talk
  • Delusions (visual or auditory hallucinations)
  •  Pounding on a table or hitting their head, hand or object repeatedly
  • Fixation on some thing or someone (paranoia, anxiety)
  • Biting, pinching, hitting, kicking
  • Crying, moodiness, and other outbursts
How to Handle a Person with Alzheimer’s Who Turns Violent:  (Based on the CNN article)

1. Back down.

Most of the time, the incident escalates when the patient does not want to do tasks such as undress, brush teeth or bathe. Don’t physically force the person to do anything, she warned. This could worsen the situation and possibly injure all parties involved.

2. When the patient is upset, apologize — even when it’s not your fault.

Using this strategy will buy you time and good will. Don’t argue with an Alzheimer’s patient, because you can’t win.

3. When the patient becomes agitated, change the topic. (Redirect)

Change the subject. Move to another location. Distract them by something fresh–the birds outside, pretend a friend has called (make the phone ring) play a song they like. “If you can stay calm, you can mirror that calmness back to them,” Kallmyer of the Alzheimer’s Association advised.

4. Keep in mind that the world is distorted for an Alzheimer’s patient.

Know your loved one. Do noises startle them? Are they more upset around a certain person or time of day? Do you know what calms them? Do you have them on a schedule that works well for both of you? Are they sensitive to sugar, caffeine, or even experiencing pain (toothaches, broken ribs, urinary tract infections, and other chronic pains oftentimes goes undiagnosed and can add to their agitation).

5. Call for help.

When in doubt, ask for help. Call the Alzheimer’s Association Helpline. 24/7 for confidential help.

1.800.272.3900         1.800.272.3900.

No one is going to blame you or take them from you–if you ask for help before something horrible happens. No one can judge what you’re going through, and no one can understand what you’re going through. Be confident and don’t be shamed by this. Get the help you need. Call 911. Don’t wait for a tragedy. Get the guns out of the house–now. Hide the knives. You can live with a butter knife until you figure this out. You’re more than just a caregiver. You’re family. As much as you want to give up–you can’t. But don’t go it alone. Don’t isolate yourself. Reach out–get help–share your story. We’ve all been shamed for far too long.

CNN article link:

http://www.cnn.com/2011/HEALTH/03/30/alzheimers.violence.caregiving/index.html?hpt=C1

Great resource: Elder Rage, by Jaquelline Marcell

Carol O’Dell’s book, Mothering Mother is now available for your e-reader! Kindle version availble here.

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Just today, I was driving home when I saw an elder-woman walking on the side of a rather busy road. Cars go at least 40 and sometimes 60 mph. on this road. She had no business walking there alone. My husband and I turned around and I got out to greet her.

“Hello, I’m Carol and I live nearby–are you lost?” I asked, trying not to appear threatening.

“Oh no, I’m not lost. I’m walking to meet my daughter.”  Her sharp blue eyes smiled back at me and I thought of my mom and suddenly missed her.

“Where’s your daughter?” I asked. (We live several miles from the nearest shopping district)

“Out shopping. I was hoping I’d see her drive by.”

I asked her where she lived and she said she was visiting from up north but that her daughter lived “back there, behind that gate.” (She must have slipped out of the neighborhood when a car drive through the gate).

I offered to take her home. She got in our car (scary, huh?) We carried on a pleasant conversation. She pointed to her daughter’s house, told me what state and city she lived in up north, and other clear-headed facts.

She was mentally sharp, but she wasn’t making good decisions–her reasoning skills weren’t quite right.

She couldn’t understand that she was at least 2 miles from her daughter’s neighborhood, walking alongside a busy road, and that she really shouldn’t be trying to find her daughter this way–nor is it wise to get in the car with strangers, even though I’m very glad she did, in this particular case.  

I didn’t think “oh bad daughter!” Not at all. I had a mom who insisted she was going to catch a taxi and go to her home. I had no idea how she could even remember the word, taxi, or what it meant but she did.  It took me and my husband and children to keep an eye on her–she was determined to escape!

I took her home. Her daughter drove up within minutes. She had been out looking for her. I left concerned. It’s so so hard to watch someone all the time and never get a break. Her mom was such a vibrant woman, it would be a challenge to keep her from not wanting to strike out on her own–not realizing the dangers she was exposing herself to.

There comes a time when our elders are still smart, together people–great conversationalists and even pretty efficient in their every day lives–but there comes a time when they might not be making the safest decisions, and that might begin to present itself when they’re out of their routine, or when they’re with someone else who isn’t filling in the gaps for them. They can even keep their act together around their kids–because they don’t want to have to move out of their home.

Is this the beginnings of demantia or Alzheimer’s–or is this simply a natural decline of our mental faculties?

That answer is different for each person, but as a caregiver, a daughter, a son, or other family member, we must be diligent in our care for our elders. They can “fool” us, not meaning to. They’re so smart and funny and together–and we need them to be so our world can continue “as is” –and it’s so easy to overlook subtle warnings signs and the beginnings of those unsaid concerns, and that’s when something can happen.

Cognitive and reasoning skills change over time–for all of us.

Yes, it’s wise to get an ID bracelet, to show their names and contact info into their clothing and write it with a sharpie on their shoe or hat, but nothing takes the place of being aware of where your elders are just as mom has to know where her children are.

In Florida, we have the Silver Alert -a system that announces when an elder is lost or wandering and treats it much like a missing child and the Amber Alert system that alerts the authorities and posting it on the news and highways. This program has saved many lifes.

It’s our awareness that keeps our loved ones safe–and sometimes even that’s not enough.

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Sometimes we make holidays too hard. We buy cards. We buy ties, baseball caps and t-shirts for our dads. We plan elaborate parties and rack our brains for the next great Father’s Day gift when what our guys really want is just to hang out with us. 

Easy and Thoughtful Father’s Day Ideas:

  • Does your dad like breakfast? Mine does. Why not have a pancake extravaganza? Pick up 3 or 4 different kinds of syrups, maybe some bananas or walnuts and cook breakfast together–or at least pull a chair up for dad so he can sip on his coffee and read the paper nearby.
  • Is your dad a fisherman? Pick up some worms or some shrimp and find a lake or stream and hang out a bit. Even if dad is in a care home, you can usually take him on an outing for a couple of hours–or get that fishy kids game that have magnets on the end of tiny fishing poles–it’s fun.
  • Stop by the library and rent some WWII movies–you know, those classic war films with Lee Marvin. Make bowls of ice cream (don’t forget the whip cream!) and even if you’re not into shoot-em-ups, you can be for a couple of hours.
  • Make your own card by writing your favorite “dad” story. Start with, “My favorite day with dad was….” Or, how about “I’ll never forget when dad…” Write it big and clear so he can keep it and reread it.
  • Does your dad have a friend he hasn’t seen in a long time? A work buddy? A distant cousin? Why not plan a get together. Even if you have to pick the buddy up and take him to your dad’s place–or plan for them to meet at a restaurant, it will be toally worth it just to see the two of them gabbing and smiling This hanging out time with a buddy might be just the thing to lift his spirits.

No matter how you celebrate Father’s Day, remember to relax and not watch the clock. It’s so easy (espeically if you’re his caregiver) to get on such a regimine that we forget just to sit and talk, to not be in a hurry, to not think about all the things we have to do. Even if your dad has dementia, Lewy Body or Alzheimer’s, research has shown that the things we’ve enjoyed all our life (art, music, entertainment) still holds true–even after our mental decline.

In other words, your dad is still your dad, and our most precious gift to offer…is our time.

~Carol O’Dell

Author, Mothering Mother

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Caregivers are feeling the pinch just like everyone else, but there is a difference. Many caregivers are used to caregiving on a dime. They’ve been on a “controlled” budget for years, and yet they may be reeling from their shrinking savings, or a recent change in insurance coverage that leaves them short. Another worry. How can caregivers make ends meet and not compromise case for their loved ones?

I don’t know about you, but I grew up with two very saving people. My parents were married in 1929 (and we all know what happened that year, managed to find jobs through the depression, then Daddy fought in WWII. I’m one of those kids that grew up with stockpiles of canned goods in every closet.

My mother was the original recycler–bread wrappers, aluminum foil, buttons, shoe strings…you name it and it got reused. But when my mom got Alzheimer’s and I became her caregiver, let me tell you, all that worrying and hoarding turned ugly. She fixated on things (part of the disease), and sadly, fear and worry grew with age. Being a sand-gen mom meant I had to keep everybody going–meals, laundry, meds, doctor appointments, kid’s needs filled my head and my heart and my hands. As it should be.

I’m not going to insult your intelligence by telling you to clip coupons or turn lights off in unused rooms. You know to put extra water in your soup and buy day old bread. I’m more concerned you’ll take “saving” too far and not get the things you really need.

It’s not easy, but I want you to know that you can do this. You can figure out how to handle your finances even in this tough, crazy time.

Caregivers possess a very important skill: ingenuity.

We’re problem solvers par excellent. We’ve had to figure out how to budget our time, our strength, our groceries, and even our sleep. And if you’ve gained a skill in one area, you can transfer that ability to another area.

So I’m going to give you some strange advice: Don’t go crazy with cutting back.

Why?

Because you have enough on your plate.

Because you’re probably already pretty saving.

Because you already have enough to worry about.

Because it’s best to concentrate on one or two areas where you really can save or get help.

Because your loved needs you to care more about your relationship than saving six bucks at the grocery store.

Because time is precious–even more precious than money. 

It’s easy to get caught up in the frenzy you hear in the news. It’s easy to panic. But panic won’t help. Turn off the news. Put on a CD, some music, a book on tape–whistle, call a friend.

Your role as a caregiver, (which also means you’re a spouse, a daughter, a son) means that you don’t get to freak out. You have many hats to wear. Your job is to keep the big picture in perspective–managing everything from your home to your health, from your loved one’s health (including mental health), and even dealing with issues of the dying process–grief, hospice, and death. You have to know when to forget the world and just hold hands.

If you’re considering doing without something–lights, heat, filling up your car with gas, renewing your license, foregoing that doctor’s appointment, or eating red meat–ask yourself this question: Can I live with the consequences of doing without this? If the answer is no, or it’s really taking a chance, then it’s not worth the risk. You can actually wind up spending more money by doing without something necessary–and then trying to play catch up.

 Caregive on a Dime:

  • Is your car older and paid off? You might want to consider changing your coverage and drop your comprehensive coverage. Your insurance will go down, but realize that if your car is stolen, vandalized or weather damaged, it won’t be covered. You’ll only be covered if you “collide” with another car. 
  • Ask your doctor before changing your prescriptions to the generic version. Why? Not all geriatric meds work the same. I know someone who had a reaction when switching to generic–it caused major problems. 
  • Ask. Ask your bank if you should refinance (assuming your home isn’t paid off). Ask for a discount. Ask for assistance. You’re entitled to services you probably don’t even know about. Call up your senior center or your elder affairs office and start asking for help.
  • Consolidate houses, cars, and incomes. More and more families are doing the multi-generational living thing. It makes sense–brothers, sisters, ex’s, and parents are all figuring out ways to live together.
  • Ask if you qualify for any prescription programs or trials. Ask your doctor, your pharmacist, or your elder affairs office for more details.
  • While coupon cutting and sales can help, a caregiver is stressed for time. Don’t kill yourself driving to three stores to get your basic groceries.
  • You can get free or reduced price supplies for adult diapers, food supplements, and other home health aid products. Check at www.qualityeldercare.com, or www.elderdepot.com, or  www.agingpro.com. Keep asking and keep looking for what you need.
  • Choose to be happy right where you are. Live small, but find ways to give yourself a few creature comforts.
  • Watch out for depresssion. If you’re on a tight budget, it’s easy just to hunker down and try not to move–but that’s not healthy. Be sure to do the simple things–take your vitamins, stretch, call a friend, and get outside at least ten minutes a day for that very necessary vitamin D.
  • If things get mad, make some noise. I call it having a “Shirley MacLaine Moment.” Remember Shirley in Postcards from the Edge when she lets loose on the nurse in order to get pain medication for her daughter? Sometimes you have to let loose. Yell, demand, make noise. Don’t suffer in silence. Don’t cave in and give up. Don’t go hungry or do without needed medication. Call up a local church, shelter, senior center and tell them how bad your situation is–oh, and don’t forget those relatives you rarely ever hear from–call them too. But don’t cry wolf–a lot of people are in dire circumstances–and you may only get one shot at help, so use it wisely.

Keep life simple, appreciate life, and keep it all in perspective. You’ve lived long enough to see good times and challenging times. The only constnat is change. Please know that there are people out there who care, so don’t sit behind your front door and give up.  Hope is your greatest weapon. Hope is food for your soul.

~Carol D. O’Dell

Author of Mothering Mother

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Ever found yourself (or as a caregiver for your spouse, mom or dad) sitting across from a doctor and feeling like they’re not hearing you? At all?

Most of us pine for the days when we had home town doc who delivered us, knows everything about us–and cared that we stay alive.

Not that most ever had that–but it sure sounds good, doesn’t it?

As a caregiver to my mom who had Parkinson’s, heart disease, and Alzheimer’s, trust me, I’ve spent a whole lott of time in doctor’s offices.

I did a little research on-line to find out various ways to find a good doctor, and here’s what I uncovered.

What to look for in a good doctor:

  • You can’t beat a recommendation from someone you know–a friend or co-worker.
  • Make sure they’re board certified in their field. This is crucial because it can be deceptive.
  • Visit the doctor’s office before making your appointment. Look around–is the staff fussy? Do they look miserable? Time how long it takes for a person to be seen. Ask the staff how long they’ve worked for the doctor, if they can tell you a little about him or her, or how long the doctor spends with each patient and see how you’re treated. If you hear alarm bells go off in your head, then keep looking.
  • Get a doctor you like to recommend a doctor they like (if you’re looking for a specialist or in another field) because good doctors tend to hang out (aka play golf) with other good doctors.
  • Check out some online sites that review credentials, awards and distinctions, as well as a rating system for his office and staff. Ckeck out RateMDS.com, Healthgrades.com,  ChoiceTrust.com or Vitals.com.
  • Remember you’re the client. You’re paying, and you should be treated with respect. Sorry to say, but no doctor is going to spend as much time with you as you probably would like, but they should listen to you, be competent in their assessments, and know their field of medicine well.
  • If you do feel that you need to stay with this doctor (perhaps because of location, specialty, or insurance), then here are a few helpful tactics.

How to Communicate Effectively With Your Doctor and His/Her Staff:

  • Repeat over and over: I am 100% responsible for my life. (And if you’re a caregiver, then you’re also responsible for someone else’s). Don’t leave your medical issues completely in someone else’s hands, even if those hands are attached to a physician. You should know what medications you’re on, what course of treatments you’ve agreed to–at all times.
  • Chat with the staff and get to know them. Bribe them with a tin of chocolate popcorn or stop by near a holiday with a gift card to a local restaurant or coffee p. Hey, it’s hard to resist someone who takes an interest in you, and that’s exactly what you’re doing–remember the old Golden Rule? Still applies. Ask about the picture of their kids, and use their name when you’re talking with them. This is just being considerate, but it comes in handy when you’ve got an earache and you call begging to be seen that day.
  • Start out your relationship with your doctor by shaking hands (dressed), and looking him/her in the eye. Let them know that you expect to be treated as an equal. You are–you hold a needed job in your community (or you did if you were retired), and  you are intelligent and articulate. Without being bossy or demanding, let him/her know that you’d like this to be a warm and professional relationship.
  • Go to the doctor’s office in a good mood! Be a  ray of sunshine to others around you. Be on time, don’t gripe about the little things, joke around with the staff–and watch how differently you’re treated. Take your knitting or your favorite magazine and get to know the person you’re sitting next to. Life is happening everywhere–even in doctor’s offices.
  • Write your questions down and keep them brief–but make sure you go home with answers. Also write down their answers or directions. Don’t expect their directions to make sense–put it in your own words and have a clear plan of action you can follow when you leave the doctor”s office. Don’t be intimidated with medical jargon, but also let them know that they’re not talking to a pre-schooler.
  • Do your homework–go on the Internet, check out your condition and possible drugs, treatments, symptoms, and side effects. You don’t even have to mention it since some doctors find this annoying or intimidating and a few others mght applaud you for being pro-active. Either way, it’s your health at stake so you have every right to educate yourself, but know that not all Internet medicine is accurate.
  • If you don’t feel you’re being heard, then be clear. Ask a pointed question and make sure you get an answer. You have a right to know what’s going on. Start out asking in a firm and clear manner, but don’t give up. Restate the question and ask again.
  • Don’t settle for being shoved a pill if you don’t want one. Medicine has sadly become entwined with the pharmaceutical industry and we forget that there are other alternatives and compliments to drug therapy. Let them know what kind of patient you are, and state what types of treatments you’ll consider–or won’t consider.
  • Consider holistic medicine as a complement to your main physician. Have you tried accupuncture for aiding in quitting smoking? Or for arthritis? Eastern based practices are now more mainstream than ever, and many of their benefits have been documented.
  • Write down your doctor’s names, your prescriptions and dosage and keep it in your wallet at all times. If you fall or lose conciousness, it’s imperative the the EMS workers and ER staff know this information. Don’t rely on the doctor or his chart–and realize that if you see more than one doctor and they’re not aware of the other’s medications, you could potentially have some serious drug interactions.
  • Speak up if there’s error. It happens all the time. Dosages get written down incorrectly. The doctor orders another round of chemo and you don’t want it–or you can’t take that amount–or your insurance won’t pay for a particular treatment. Don’t get upset, but do speak up–remember that 100% responsible for your own life mantra I mentioned earlier.
  • Say thank you when you leave. Shake the doctor’s hands, and even if he or his staff act rushed or inconsiderate, then make it a point to show them how to be considerate. The amazing Maya Angelou said, “We teach people how to treat us.”

My last bit of advice might sound strange, but try to not have your entire life evolve around your medical conditions.

I know that there are times when it may seem like it does–and if you have cancer or Parkinson’s, or you’re the caregiver to a loved one that has Alzheimer’s, then you probably spend a lot of time at the doctor’s office, rehabilitation, physical therapy, and in the hospital. It can be exhausting and  overwhelming, but when you can take a mental or physical break–take it. It’s not healthy to live at the doctor’s office and dwell on being sick. Honestly, it won’t make you well. Follow your regimen, take your meds, do your treatments, but keep your mind on living and learning–on your family, on leaving a legacy, on your garden, your Tai Chi, and of course,  your grandchildren.

The medical community is there to care for you. As an individual or a caregiver, you have to take the initiative and draw the best out of those around you. Be responsible for yourself, have a goal, cultivate positive attitude and a spirit of gratitude   and state clearly what you want and need. You just might get it.

~Carol D. O’Dell

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

www.mothering-mother.com

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Trust me, I wasn’t always a patient caregiver, but I had “on the job” training.

And like most of you, some of my previous life experiences had unknowingly prepared me for my caregiving role.

My mom had Parkinson’s for about 12  years. Parkinson’s is a neurological disorder that effects the nervous system. Some of the symptoms of this disease include a shaking or trembling (usually in the hands or legs, sometimes head), and an inability to walk well (shuffling, difficulty with changes such as flooring changes (going through doors, carpet to tiles, etc). My mother would come to a door and just freeze. For minutes.

Sometimes, I’d feel impatient, think about my kids, conflicts, my marriage, what I needed to pick up for dinner–how much weight I’d gained over the holidays–I was all over the place. But over time, I learned to just be present.

How did I ever learn to be a patient caregiver? 

I think the bottom line is that I had to learn to accept that caregiving was what I was supposed to be doing at the time. (I was only able to achieve this zen state on rare occasions).

I decided I never wanted my mother to feel bad for having Parkinson’s. I never wanted to shame her, or embarrass her. It’s such a hard disease. Michael J. Fox said that “Parkinson’s is the disease that keeps on giving.” She’d sweat, get clammy, start to cry because she just couldn’t move. And I’d talk calm, make a joke, pat her hand and tell her to take all the time she needed. I thought of her “pauses” as sort of a body stuttering, and the best thing I could do was to relax so that she wouldn’t feel my tenseness, and to reassure her that I was there for her.

Patience also comes with being a mom. Pregnancy take patience. Labor is going to happen in its own sweet time. Nursing can’t be rushed. You can take that sacred experience and make yourself miserable by not relaxing and enjoying the moment. You have to just be–you, your baby, all warm, a cuddly chair, a lullybye…life doesn’t get any better. And you can’t rush a toddler. They have no concept of time–nothing more important up ahead. What a life lesson there. A roly poly on the sidewalk of the most fascinating thing in the whole wide world. Getting dressed by “me self” as my middle daughter would say was such a source of pride for her that all I could do was to step back and watch her struggle and triumph. 

My lessons in patience continued–doctor appointments, ballet lessons, horseback lessons, homework help, waiting in line at a carpool, teaching a kid fractions, teaching your teen to drive a car–I learned to enjoy the journey, to sit, to wait, to let those I love relish in the life events. I’ve sat through hundreds (not kidding) of ballet practices and recitals. I’ve clapped, bought flowers, a ton of hairspray, bobby pins and tights, and then I’ve driven home way past midnight with a car full of sleepy kids. It’s what moms do. We’re there. We witness lives. I nicknamed myself “Princess Drive and Pay.” I drove kids places (like soccar, karate, acting classes), and then I paid.

So by the time my mom needed my full-time care, I had exercised my patience muscles–but patience with an elder is a tad bit different.

What I Learned on a Slow Day:

  • I get to decide what I consider to be of value, and investing in those I love is a good use of my time.
  • I learned to entertain myself where ever I am–in the car, in a doctor’s office, in the hospital, standing in a bathroom stall with my mother because she can’t get up and down off the toilet without help. I learned to think, to imagine, to let go of “what’s next.”
  • I learned that a sense of humor really helps. When you’re dealing with fussy nurses, a grumpy mom, and hungry kids, you better figure out that getting everybody to sing a car song is better than fighting–or complimenting a nurse might actually win you a few brownie points and get you seen before closing time.
  • I learned not to belittle someone I love because they can’t hurry along. I learned that being encouraging, and even being firm (so that we eventually did get moving) is part of caregiving.
  • I learned that I wanted her to maintain her sense of dignity. While in many ways I did have to mother my mother, I didn’t have to strip her of honor.
  • I learned to smile as others whizzed past us. Now that my mom’s gone, I so miss having my buddy at my side.

I wrote this after my mom had passed, it’s in my book, Mothering  Mother, I hope it explains best

When I Miss Her

I miss Mother when I go to the grocery store. Since I’m no longer eligible to park in the parking spaces for the handicapped, I must walk by the light blue and white lines as I head across the parking lot that no longer takes me ten minutes to cross. I see Mother grip the handle of the grocery cart and remember the freedom this rolling walker gave her. I still see her curved spine dipping, her stockings slowly sagging from above her knees and eventually bunching around her ankles.

I see her silhouette, complete with a bright blue nylon cap and its hundreds of petal-shaped pieces that made her head look like a massive flower. Some people loved her hat, others made fun of it, snickered about it behind our backs, but there were a few who found her and her blue hat endearing.

I miss her as I pass by the bananas. She said they gave her potassium and ate one a day. I had to buy seven a week—not six, not eight—though I often cheated, hoping to tide her over a day or two. Sometimes I get the urge to eat one in case I, too, am low on potassium. Any fruit she ate had to be peeled, cored and washed until it practically no longer resembled anything that ever lived. Apples were pale and tinged brown, grapes looked naked and embarrassed without their skins.

I miss her when I pass the Little Debbie display. Her face would light up at the sound of me opening the cellophane wrapper of an oatmeal pie.

I miss not picking up her half gallon of milk, her apple juice and her frozen dinners. I knew which ones she liked—the meatloaf, beef tips and flounder, nothing with pasta, very little chicken. Ice-cream bars remind me of her dying, not living. I can’t bring myself to eat one, or even buy them anymore.

I miss her small talk with the cashier, the slightly condescending way she treated the help, and the times she surprised me with genuine kindness and humor. As time went on, she took forever to get out her wallet, and two forevers to pull out her credit cards. She could no longer differentiate a Visa card from a debit card, from a license. She’d just let them pick, holding the plastic squares out innocently like a hand of playing cards. I always tried to catch her before she let strangers rifle through her entire wallet and checkbook.

By then, some of her prejudices had diminished and she chitchatted with anyone who caught her eye, regardless of race, which was a pleasant change, though unreliable. She insisted the baggers carry our groceries to the car, no matter how few we had, and she saw no need to tip them. I’d slip them a dollar or two after buckling her in. Tipping never was her thing.

Now I just go to the store like anyone else. No one to slow me down, no one to check on, no bananas to count, no Little Debbies to hide so she won’t eat them all in two days. It’s just ordinary, and what once seemed a bother, is now missed.

What To Do If You’re Having a Difficult Time Being Patient:

  • Accept that you’re supposed to be caregiving right now.
  • Accept that ironically, there’s something that this time in your life has to teach you.
  • Accept that while it’s stressful at times, that you choose not to add to your stress by being miserable.
  • Find ways to occupy your time or your mind while you wait. A vibrant “inner” life is a cultivated skill. Practice memorizing a poem, always have a paperback book in your purse, update your blackberry, or take up drawing whatever is in front of you–the point is to not feel that your time is wasted.
  • Enjoy your loved one’s company–as exhausting and challenging as it is, you’ll miss them. Trust me on this one.
  • See this as a season. Caregiving isn’t forever.
  • Imagine that your children or someone you respect is watching you on a tv monitor–do you have a pleasant look on your face? Are you proud of your role? Are you passing a spirit of joy on to those around you? If you saw yourself on that tv monitor, how would you feel?
  • Let go of what you’re not doing at the time. Forget what’s for dinner or that bank deposit you didn’t make.
  • Put on music or hum a tune. Music is an amazing mood changer. Do it even if you don’t feel like it.
  • The great secret is that while you’re caregiving, you’re learning, changing and growing. Something you’re doing today is a skill you’ll need for tomorrow. There really is something in it–for you.

I remember this incredible line from the movie, Evan Almighty. God, played by Morgan Freeman says, (and I’m paraphrasing),

“You know, people pray all the time to be more kind, more forgiving more patient..as if it’s an object, a box I can just hand them.

What they don’t understand is that when they pray for more patience, I have to give them a situation in which they will learn to be more patient.”

That knocked me back. Somewhere and at some time (I surely don’t remember), I must have prayed for patience because boy, did I get a lesson in that fruit of the spirit. 

I botched at the whole patience virtue concept most of the time. While outwardly I might have held it together, most of the time I felt like running.

Looking back, I wouldn’t want to see myself up on that tv screen, but I also think I got it right a few times. And that’s what matters. A few times, every once in a while, I found myself enjoying that slower pace. Crossing the parking lot, walking quietly and languidly beside my mother is now some of my most precious memories.

For the most part, becoming a patient caregiver isn’t something you have to aspire to–it’ll just happen.

Most days, you have to just get by. I really don’t think we’re supposed to over-analyze everything we do. When you get your heart–and your head right, when you choose to be present, choose to encourage, all the rest will just fall in place. What you learn on a slow day of caregiving are gems you’ll carry with you for life.

~Carol O’Dell, author of Mothering Mother

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Alzheimer’s is one insideous octopus of a disease. It does one thing to one person and something totally different to another.

Some individuals become docile, too docile. They stop talking, and pretty much stop moving. For others, Alzheimer’s turns them into a fidget machine. They pace incessantly, talk, babble, rant, need next to no sleep, and when forced to sit, their knee jiggles non-stop. Others are paranoid and will lash out at anyone who tries to touch them–it’s as if their brain–and body–is on fire.

And for some, Alzheimer’s makes them anxious, mean, and violent. There’s no other way to  put it.

They curse when before the disease they were  practically saints. They use vile language that would shock and embarrass a sailor, and their eyes look as if they could kill you in your sleep. For many, their violence is more of a protective mechanism.  They may thrash, hit, try to bite if they feel cornered, yell, cry. It’s more exhausting and embarrassing than harmful. They act like really big two year old.

In all of these cases, Alzeimer’s effects each brain differently. You  have to think of it as a chemical reaction, not a persoanl decision.

And then,there are the truly violent . Their rage is unpredictable and unprovoked. They slap, bite, kick, pinch, and for a few, and surprisingly, they possess the power to break bones, knock someone down, and are truly dangerous.Many are placed in care facilities because their families can’t handle it. Their families don’t visit as often because they’re scared. They feel as if their loved one is dead to them, and yet they struggle with guilt every single day. It’s an awful existance for everyone involved.

It’s that interum time that I’m addressing–when you’re starting to notice some anger–gritting teeth, cursing, grabbing your wrist really hard, knowing you against the wall–and you don’t know how far this will go. You make excuses. You provoked it. You shouldn’t have confronted them. They’re not taking their meds. It only happened once…these are just a few excuses we create to “protect” our loved one.

I urge you to speak to your doctor now.

For some, an added medication that stabalizes their mood (and yes, it may make them lethargic) can curtail their violence. It doesn’t work with everyone, but if you catch it early, it just might work.

For many, particularly spouses, you hide these changes in behavior  from your children, your neighbors, your friends.

You stop having people over. You wear long sleeves to cover bruises.

You’re afraid all the time. More afraid they’ll take your husband or wife away than that you’ll be hurt.

You can handle that–but the guilt, the shame, the thought of being separated is what keeps you silent.

You grieve the death of your marriage, of the life you had–and yet, you can tell no one what you’re going through.

You don’t want anyone to “see” your husband, your wife this way. You want to preserve their dignity.

I understand. I did this with (or for)  my mom. I shielded her from the world. I didn’t let people know how chaotic, out of control, scary and heartbreaking it really was. I let her dig her fingernails into my arm and scream at me, her eyes so wild I didn’t even recognize my mother any more. If I would do this for my mother, I can truly understand how a husband or wife would be wiling to do even more.

But here’s what I came to realize:

This is a disease. No one will judge you or your spouse–and if they do it’s because they don’t understand what’s happening. 

Your loved one can not  help this. This isn’t their “inner self” or what they’ve been thinking all along. You didn’t contribute to this either. It just is.

It really is nobody’s business and you don’t have to share it with everyone, but having at least one confidence, one dear friend or your clergy can help lighten your heart.

You know those statistics about caregiver stress and how many caregivers die before their loved one? They’re talking about you!

You’ fall into that category big time. All this stress could lead to depression, heart disease, obesity, and strokes–and you know your loved one wouldn’t want this for you.

You are not alone.

According to a recent study conducted by the Journal of the American Medical Association s of resident-to-resident violence in Massachusetts nursing homes and dementia special-care units, researchers found that about 25 percent of the dementia population in a care facility had violent tendencies. More and more law suits are cropping up because staff and patients are being attacked, and resulting in physical injuries such as fractures, dislocations, and lacerations.

Sometimes, you just can’t do it anymore. You feel that you’re in a living hell.

This is a truly dangerous state and you have to ask for help.

With guidance, you can find a good care facility that has a low patient to care staff ratio and administers the proper medications needed to lessen the violent outbursts. I know you don’t want to “dope” your loved one. But you can’t continue to be hurt, or risk that for others.

This disease can get really ugly, and if you’re in this situation, I am so, so sorry–but please, don’t suffer alone.

That’s not love, and your loved one wouldn’t want this for you.

Screw what your family would think, what they neighbors will think. Protect yourself and know that asking for help is the right thing to do.

I can’t promise you that you and your spouse can stay together–in the house. I can’t promise you that this is going to all magically get better.

Sometimes we really do have to grieve and let go–knowing that you’ll never get back what you had.

But I promise that while it’s going to be hard–and lonely—and you’ll probably feel guilty–after a time, things will get better.

Your loved one’s care might be better managed with help. And although your life won’t be the same, it can be good. A new good. A different good.

If you’re experiencing Alzheimer’s, Lewy Body or dementia related behavioral changes (violence or otherwise), please consider calling the Alzheimer’s Association National Hot line. It’s confidential and you can speak to someone who really cares. The number is: tel: 1.800.272.3900

~Carol O’Dell, author of Mothering Mother

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