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Archive for the ‘pallative care’ Category

“I quit!” I said it more than once when I was caregiving my mom.

And I meant it–the only problem was, I couldn’t figure out what to do with her if I didn’t care for her!

I was an only child. Her sister was older than she was–and her children were taking care of her. I tried to find a care home that wouldn’t break the bank and offer decent care. I couldn’t find one–I was at the end of my rope. (I know more now about how to find care homes and financial possibilities than I did back then).

I felt stuck. My mother was in the darkest trenches of Alzheimer’s. She was mean, didn’t know who I was. She’d try to hit me, kick me, fall, refuse to let me help her. It was rough and the truth was, there was no one but me to do the job.

 I told my husband “I quit.”

 He said, “You can’t.”

Easy for him to be honorable. He got to go to work each morning and leave me in the house with…her!

I “quit” more than once. At least saying it felt freeing, and for a few minutes I could imagine myself not caregiving.

I so wanted to walk out that door, but I knew I couldn’t leave my mother to my husband and children. They didn’t deserve that. I dreaded each day. I resented my family for getting to walk out the front door to jobs and school. It wasn’t pretty. No one wanted to be with me or engage me in conversation–not that I blamed them.

In some ways, my family kept me “honest.” They pitched in, rubbed my back, made dinner, took time to be with my mother so I could nap or stare into space. It was a time in our family that really tested us and showed me how much we needed and supported each other.

Where do you go from”I quit” when you can’t quit? 

There’s pretty much only three choices:

1. You either get help and lots of help (I had help, but keeping help that really helped, well that’s another post).

2. You find a care home–and as I said, you do have more options for free, low-cost, etc., but you need to ask for help and do your research–the care home can help guide you, but don’t just take their word. Check with elder-affairs and other state and community services to fully understand your options.

3. They die. Sounds harsh, I know. But what happened in my situation is that soon after this incredibly dark place, my mom lost her ability to swallow. I considered a feeding tube but decided that at 92 with Parkinson’s, Alzheimer’s, and heart disease, that keeping her alive through a tube wasn’t something either of us wanted or needed. This occurred over six months or more, but I knew I had to see this through. It was a grueling time for all of us, but a necessary closure.

My decision to not use a feeding tube was not easy by any means. I grappled with this, if this was right, ethical. We brought in hospice, which I was surprised actually supported my decision. I worried about what others would think. I struggled with what this would do to my mother–if it would hurt–would she know? Would she be confused?

Saying “I quit” helped lift the little stopper off the pressure cooker. I had to say it several times–like a drowning man who’s more flailing than drowning–but then it became serious and I really was gulping water.

Seeking solutions (even if they didn’t work out or only helped for a short time) felt like action.

Having others (my family and friends) support me, reach out, and offer their arms to hold me convinced me I wasn’t alone.

And yes, there is a time to find that care home, to admit you’re done for, to allow them to die–if that time has come. Good old Ephesians was right. There’s a season for everything. No wonder this beautiful prayer was offered so long ago:

To everything there is a season,
a time for every purpose under the sun.
A time to be born and a time to die;
a time to plant and a time to pluck up that which is planted;
a time to kill and a time to heal …
a time to weep and a time to laugh;
a time to mourn and a time to dance …
a time to embrace and a time to refrain from embracing;
a time to lose and a time to seek;
a time to rend and a time to sew;
a time to keep silent and a time to speak;
a time to love and a time to hate;
a time for war and a time for peace.

ecclesiastes 3:1-8
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Medications lined up on the counter, canes, wheelchairs, hospital beds, portable potty chairs…at some point during the caregiving process your house stops looking like your home. It’s disconcerting in many levels: your loved one isn’t getting better, and it not only feels like you’re losing them, and on top of that, you’re losing a part of yourself as your house morphs into something unrecognizeable.

On top of that, your schedule is just plain wacky. Maybe you’re dealing with sundowning (when your elder loses their sense of night and sleep and actually gets more agitated and awake), or maybe you have a parade of home health aides or hospice personnel traipsing in and out all hours of the day and night. You appreciate the help, but it also means you have to stay dressed and be “on,” even when you feel like falling apart.

Then there are the endless doctor appointments, or maybe your loved one is in and out of the hospital or rehab. You barely get a decent routine established and bam, a month in the hospital and you have to start all over.

I experienced all of the above and I admit, I wasn’t Miss Keep-a-Perfect-House to begin with.

My mother was such a control and clean freak that it turned me off when I was a kid. Years later I figured out it was a personality difference: the structure she created made her feel safe–and it made me feel smothered. As an adult I had finally learned how to live in my own harmony–but then caregiving my mom with Alzheimer’s and Parkinson’s came into my life–along with raising three kids and a marriage–and trust me, order flew out the window.

Yeah, I used to beat myself up all the time about the sink full of dishes or the laundry not put away–oh and let’s not forget the dog hairs that clung to bottom of the toilet base (I hate that place!), or the piles and piles and piles of paperwork on my desk….

But I tapped into a different way of thinking that made me feel a whole lot better about myself.

If you brought me into a horribly messy room and told me to clean it up, I’d feel overwhelmed, avoid doing it, believe it would take me weeks to make a dent, or simply rebel.

But…if you brought me into that same horribly messy room and asked me if I could make it beautiful, my Geiger counter would go off the chart.

I would think along the lines of color, style, symmetrical and asymetrical lines.

I would think about what should go on the walls, and what should be put away. 

I would immediately recognize art pieces or family moments in the room that could and should be highlighted.

I would be excited and couldn’t wait to get started.

So I used that principle to get excited about aspects of caregiving.

After we called hospice, which of course was extremely hard and scary, and after I accepted that fact that my mother’s time on earth was limited, I began to look at her room and how I wanted it to “feel” during the last months of her life.

First, I decluttered. My mother liked more “things” than I did–knick-knacks–everything from garage sale goodies to valuable antiques and a gazillion family pictures crammed into her tiny apartment we built onto our house for her. I began to get them out of the way. I knew that we were literally fitting about 4-5 new people into our lives each week: a nurse, a home health aid for baths, a chaplin, and family and friends who would come by to visit. We needed space, and I needed to think straight.

Next, I put up a lace curtain over her bedroom window. She already had blinds, but I envisioned her lying peacefully under the morning sun and the lace curtain moving gently on a breeze. Poetic sounding and maybe even a bit sappy, but I needed this vision of beauty, especially at a time like this.

I put up one of those easy stick flower borders in her bedroom and brought in my favorite lap blanket and a few books of art and poetry (Mother’s Bible was already there, and a picture of her mother she had grown attached to) my journal, and a small vase of wildflowers so that when I was sitting with her, I had a bit of my creature comforts nearby.

Things were feeling better. I had created my own sense of order (the papers were still piled on my desk, I assure you), but I had focused on beauty, and for me, that brings joy and peace and was at a time when I desparately needed a little bit of both. 

Did my mother notice? I’m not sure, but this was for me. This was so I could sit and hum a familiar song, swab her mouth with Vaseline and wipe her face and arms with a cool cloth. This was so I could do all the things I needed to do.

My mother was pretty out of it those last few weeks (the end of Alzheimer’s had caused my mother to forget how to eat and eventually swallow). But I noticed that the more I made this a haven for me, I didn’t dread sitting next to her. I could sit with a cup of tea, my blanket, my journal, and read her a Psalm, look out the window with the lace curtain, and be present in this very important time in our lives.

What motivates you? What helps you think clearly and move easily?

Do your surroundings resemble a hospital ward or a home?

What makes you feel safe?

 What’s your idea of order–or beauty? It may be very different from mine, but I hope you find yours.

~Carol O’Dell

Author, Mothering Mother: A Daughters Humorous and Heartbreaking Memoir

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I’m a keeper. I didn’t know I would be, but I can’t imagine parting with Daddy’s jacket.

It’s brick-red suede, and has completely worn through at the edge of the sleeves. It no longer smells of him, but I keep it.

I remember when I was a child, riding with him to Sears on Saturday morning just to buy salted peanuts and look at the tools in the tool department. He wore that jacket. I was adopted and maybe that makes me more sentimental, I don’t know, but keeping my past is important to me.

I also have his Bible, his wallet, his watch, his glasses, and a yellow shirt I remember him in.

I have lots of items that was my mother’s–her mink coat, her Russian coat, purses, jewelry, a Sunday suit, and more Bibles. (My mother was a preacher, so trust me when I say she had lots of  Bibles).

I also have their photos, letters, recipes, Daddy’s old tool chest, the first gift he ever gave her when she was just 14–it’s a small cedar box that’s in the shape of a heart. If  my math is right, he gave it to her in 1925. I can tell the story of  how they met as if it were my own.

Why do we keep our loved one’s clothes?

Like a child’s ratty blanket, we hold on. Safety, security, identity.

Our momentos are in boxes, on shelves, in cabinets, and I know I keep way too much, but how do you let go of such things?

It’s all I have now, and I believe that by pulling out Daddy’s coat or by pinning on one of my mother’s broaches, I can see them clearer, remember better. 

I remember Daddy’s bushy eyebrows, the thickness of his fingers and how I could barely squeeze my child fingers through his. I remember that jacket and how he’d wear it when we went to see his family–his sister and brother every Sunday afternoon. His faithfulness amazed me then. His loyalty and tenderness is something I value in a man.

There are issues with keeping things. Psychologists might tell you that you’re not moving on, not making room for the new. I understand the logic. A friend recently visited my home. I hadn’t seen her since my mom was alive and she commented on how much my house had changed. My mom’s antiques are no longer on display. Some have been give to other family members, others sold.  This is a slow process–for me.

It no longer looks like my mother’s house. After moving my mother and her 40 years of not moving, her collections oozed out of every crevice.  I barely had room for “me.” My mother was one powerful woman. She had a way of taking over.  I let her reign, so to speak. As her daughter and in those last few years, caregiver, I learned how to hold my ground and still allow her to feel as if she had some independence. 

But now, I have a new couch, a new dining room table.  Her furniture has been divvied up among my daughters. I’ve reclaimed my throne, so to speak.

Ironically, I consider myself more of a futurist than a person who lives in the past. I lean toward modern/eclectic design and  and music and I’ve made a slew of six month, one year, five year, and then year plans, always writing my future. I’m a list maker–a list for the day, the week, the month, sometimes two a day. I like noting the little things I’ve accomplished. I’ll write something down I just thought of just to get the thrill of crossing it out.

But when it comes to my parents, I’m a keeper, but it no longer keeps me  in the past. I’ don’t think I fall iinto thecategory of  “not moving on.”

I like to think of their clothes and personal items as a cushion to my life. As if they somehow support me and connect me. Just one look at that jacket and I’m four again. No other Bible comforts me like Daddy’s. I don’t need to even open it to feel a sense of guidance.

It takes time to get to a place to let go of at least a few things.

After your loved one dies, part of grief is when you still try to live in your old life with old clothes and the way things used surrounding you. 

You weren’t ready for him to die. You don’t want to date, get a new job, or have to figure out what to do with yourself next Christmas. You don’t want to move on.

 Some people get rid of things too soon. Others, too late–it’s different for each person. Finally, you begin to make your own way. Reinvent yourself. Find who you are–now. They are in you, a part of you, but you are changed. You have to go on.

What’s the time frame? Varies. I know people who were clearing out closets before the funeral. I know others who open a closet ten years later–and there’s everything just as it was.  Of course, there’s always a chance of getting stuck and not being able to let go. You run that risk.

For many, somewhere around or after that first year mark, things shift–a little. You don’t have to make yourself do everything. Some things come a little easier. A little. For others, it’s two, three years before they can feel anything but blinding loss.

But somewhere along the line, you let go of a few things. You call up a family member and offer them a book or a knick-knack. You sell something, drop items off at Goodwill or another charity.

You live with the empty space for awhile before you figure out how to fill your life again. And  the items you keep become more intended, more precious. They go in top drawers and the chest that sits in the guest bedroom. You leave out a few photos, a book–a silver comb that sits on your dresser.

Your loved one is now incorporated. Their clothes, their memories are a part of you, in your house so to speak–but they have a place and not like a box you trip over whenever you walk into a room. Anytime you need to, you can slide open a draw and remember. Find comfort.  

And now, there’s also room for something new. 

~Carol D. O’Dell

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

Carol is a Family Advisor at Caring.com

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Are you afraid you won’t be there when your loved one passes away?
Take a moment and be with them now. Close your eyes and talk to them.

A friend called me tonight. She was upset.

Her grandmother had a heart attack–and it doesn’t look good.

She’s afraid she won’t get there in time.

The holidays are a tough time to add grief and worry to the mix.

Not that there’s a good time for a loved  one to die, but it just doesn’t seem right when it’s the holidays.

This is supposed to be a happy time, right? A time for family.

If only disease and death were that courteous–to give us a few days a year of peace.

But unfortunately, it may come at a time when everything in you says, “no, no, no.”

I had a talk with my dad in the middle of the night. I had dreamed about him. I don’t even remember now what the dream was about.

He was having yet another heart surgery–and I woke up–the dream had been so vivid. So, I got up, and he and I had a talk.

Daddy didn’t die for another eight months, but this experience was so real, and ever since, I’ve been so grateful for that quiet time with just the two of us.

 

I listened and suggested that my friend take a few minutes alone and talk to her grandmother.

You can’t always control timing. You can’t always travel–so don’t wait to have that heart-to-heart talk.

Time, distance, disease, loss of memory, and even pain…our prayers, thoughts, and love can transcend all these barriers.

Don’t wait until you get there–planes and cars take time–the power of love is instantaneous.

 

If you’re in this situation, I hope you’ll take a few moments.

Tell them you love them.

Tell them it’s okay to let go now..

Tell them you’ll be okay.

If you need to, ask forgiveness–and accept forgiveness.

Thank them for who they are to you, what they mean to you.

Accept this experience into your heart. This is just as real as if you were to physically be in their presence.

Be at peace.

If your loved one passes away before you arrive, then you’ll have already said what you needed to say.

~Carol O’Dell

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

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People are about as happy as they make up their minds to be. ~Abraham Lincoln

I find it pretty amazing that this quote is attributed to Abraham Lincoln.

He didn’t exactly have a cushy life.

His mother died when he was nine, and although his family could barely survive, young Lincoln gave up hunting after watching a turkey suffer after he shot the bird(the bird thing is a side note, but I found it interesting).

He didn’t just become president over night–he was a lawyer, then tried for congress (twice) but was defeated by Stephen Douglas–over the issue of abolition.

He married Mary Todd, and three of their four children would die before adulthood. This left Mary, who already suffered with depression, even more mentally unstable. As Abraham Lincoln’s life began to evolve more and more around politics, his marriage suffered.

President Lincoln was under great stress to try to hold our country together in perhaps its most challenging time. He did so, but with great personal sacrifice. He was assasinated when he as only 56 years old.

According to today’s standards of what qualifies as a “good life,” Abraham Lincoln’s journey would not be considered an easy one–then or now.

(Other great quotes by Lincoln )

And yet, we all owe him a great debt. He held America together and changed the course of  history. His words and example still inspire us today.

He doesn’t exactly seem like a person who would focus much on the meaning of happiness–but who better than someone who knew, but did not give into sadness/

Happiness is a lot about choice. It’s a state of mind and way of looking at things. It doesn’t change the facts. If your mom has Alzheimer’s, if your dad fell and broke his hip, that’s a fact–but how you deal with it–that’s up to you.

There were many times in Mr. Lincoln’s  life when I’m sure he had to choose to simply go on, breathe in and out, and keep on doing the task at hand.  Sometimes happy isn’t about being happy, but choosing not to be unhappy (aka miserable).  Caregivers know this well.

According to the Princeton online dictionary, happiness  means:

  • state of well-being characterized by emotions ranging from contentment to intense joy
  • emotions experienced when in a state of well-being

Where did the word  “happy” come from?

It dates back to 1340, from the waord, “hap,” which was connected to chance or fortune.

(From  Etymology.com)
1340, “lucky,” from hap “chance, fortune” (see haphazard), sense of “very glad” first recorded c.1390. Ousted O.E. eadig (from ead “wealth, riches”) and gesælig, which has become silly. O.E. bliðe “happy” survives as blithe. From Gk. to Ir., a great majority of the European words for “happy” at first meant “lucky.” An exception is Welsh, where the word used first meant “wise.” Used in World War II and after as a suffix (e.g. bomb-happy, flak-happy) expressing “dazed or frazzled from stress.” Happiness is first recorded 1530. Happy hour“early evening period of discount drinks and free hors-d’oeuvres at a bar” is first recorded 1961. Happy-go-lucky is from 1672. Happy as a clam (1636) was originally happy as a clam in the mud at high tide, when it can’t be dug up and eaten.

How does it relate to caregiving?

Much of caregiving doesn’t fall under the category of “happy.” While parts might be necessary, needed, serve a purpose, and at times, appreciated–as a caregiver  I found that I had to fight or choose to be happy. Let me tell you, I know how it feels to push that rock up hill. There were some days when a Volkswagen Bug full of 50 clowns wouldn’t have gotten my mother to crack a smile! Caregiving taught me how little I could control, and writing Mothering Mother helped me to reflect on my journey.

I had to look for the good, the funny, the crazy and ironic. I had to let go, give up, give in, and simply trust. So much was so way beyond anything I could have prepared for that it was in away, left up to luck, to chance–to hope. And maybe that’s where the happy part comes in. When you can’t control it, you might as well choose to see the good, any good that comes your way.

The smallest of good/happy moments could make my day–a cardinal dipping past my window–I love how they fly–dip, dip, dip–their bright wings in defiance of a winter morning.

Bottom line, if Abe Lincoln can choose to be happy, then so can I.

Happy for no reason. Let luck and chance blow in like a surprising summer rain. Trust that it’s all meant for the good.

Right now, with all the economic challenges we face individually and collectively, I feel like I don’t have a choice–either crawl in the bed and pull up the covers (indefinitely), or keep an eye out for bright red birds and all the amazing small wonders that surround us.

Carol D. O’Dell

Author of Mothering Mother, available on Kindle

Family Advisor at Caring.com

www.caroldodell.com

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You  have many options.

Helpful Links:

Great article:

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

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

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Alzheimer’s is a tough diagnosis.

Many people hear the word and instantly get an image of their loved one completely uncontrollable–who no longer knows who they are.

It’s worse than any horror movie.

Recently, at a caregiver’s conference I started my talk about my caregiving journey–and that my mom had Alzheimer’s. A woman jumped up out of her seat, let out a cry, and ran out of the room. The director followed her out the door.

Later, the director shared that the woman’s mom had been diagnosed with Alzheimer’s, and this was the first event she had attended. This was the first time she was admitting to herself that her mother had Alzheimer’s.

Why is it so scary?

Because Alzheimer’s, like cancer has a ripple effect.

We’re afraid of what the end will be like.

We’re afraid our loved ones will suffer. We’re afraid of how bad it’ll get.

We’re afraid it might be in our genes, too.

Afraid, afraid, afraid.

People are afraid they’ll get Alzheimer’s, and then if they do get it, they’re afraid of what the end will be like. That’s a lot of fear. I don’t know about you, but if I’m going to be mauled to death by a bear, then bring it on–cause worrying about it for two decades will kill me with an ulcer before I ever see a bear!

Getting that dreaded diagnosis means your life as you know it is over.

Really?

Is it all or nothing?

Does your brain, your personality, your purpose and dreams all fall out of your head the second the doctor utters this terrible word?

NO.

You (or your loved one) have probably been living with Alzheimer’s/dementia for awhile.

Life’s been pretty good, right? Sure–some slippage–some “what’s that called, what’s his name”  moments–but hasn’t there also been some quality of life?  

Does it mean as a caregiver that you will never see your friends, go on vacation, or make love–ever again?

No, it doesn’t!

Yes, it’s scary to say the word.

It’s scary to know that “it’s” in there. Lurking.

But you do have time.

You do still have a life and people you love. Nothing has really changed since yesterday.

I’m not saying it’s a picnic, my mother had Alzheimer’s and lived with us the last almost three years of her life, so I’ve seen this disease up close. But now that there’s such an awareness of Alzheimer’s, there’s earlier diagnosis–which means people are getting treated earlier.

Drugs such as Aricept, Exelon, Cognex, and Razadyne work well on many people who are in the early stages of Alzheimer’s. You can take your meds, and still enjoy so much of life.

What can you do if you or your loved has Alzheimer’s?

(It depends on age, stage, and other existing illnesses)

Get up tomorrow morning and have the same breakfast you had today.

Watch The Price is Right or go to the store. Keep on living your life.

Yes, you can take a trip. Go to Greece. Go to Rome. Do those things you’ve always dreamed of–but also know that your ordinary every day life has value.

Don’t feel lke you can’t go with a friend, your spouse and take a tour. You can. Take your meds, don’t over do it, but go!  So what if you forget the busboy’s name on the cruise ship. So what if you and your wife walk everywhere together hand in hand.

Just remember that having coffee on your back porch while reading the morning paper is pretty darn great too.

Get together with friends. Talk about your diasnosis. Get it on out there. Let them ask questions.

Let’s educate our loved ones. Let’s get over the stigma. Let’s show them that life indeed does go on. Enjoy dinner, enjoy eating out–crack a joke and watch everybody bristle as to whether to laugh or not.

Go for a walk. Your legs aren’t broke, you know. You don’t have to become a couch potato. If your finger can flip channels, it can surf the ‘net. Raise money for Alzheimer’s research or blog and share your journey with others. That’s what Terry Prachett is doing. He’s a well-known writer who has Alzheimer’s and he’s donating monies and bring awareness to this disease. You might as well use it to do some good in the world.

There are no guarantees for anyone–so why not have the best Christmas ever? Get that toy train you’ve always wanted. Take that family portrait with the kids, grand kids and great grand kids. Wear a Santa suit and pass out presents.

This is the time to video or audio record your life, your memories, your songs and stories.

Life is precious. Memories are to be passed on and held dear. So find the time when you are rested and clear headed to go ahead and yack and yack and tell all the stories you can think of–about you, your career, your adventures, your sorrows and your victories.

What if you’re forgetting more than you’re remembering these days?

Then spend this tender time with those you love. Tell them you love them–now.

Ask them to remember for you. Create a system of post-it notes, alarm clocks, and every memory helper gadget you can find. But more importantly, sit with your sweety, play with your dog–and just be present.

What if the diagnosis of Alzheimer’s comes after there’s much memory loss?

Then know as a caregiver that while your loved one may at times feel agitated and scared–Alzheimer’s is not physically painful. There is some pain at the end of life (but that’s related to the shutting down or bodily systems). The hardest part regarding pain is that late stage Alzheimer’s patients can suffer pain from another ailment and not be able to communicate it (such as a bladder infection, toothache, heart condition, etc).

Yes, Alzheimer’s is confusing (and that falls under emotional pain), I”m not belittling the ramifications of this disease and its impact on families in any way.

What can I do as a caregiver/loved one to help?

  • Be patient
  • Don’t get overly emotional–that’s scares them
  • Stay in charge–that makes them feel safe
  • Keep them safe
  • Take care of yourself, pace yourself–this could be along haul
  • Let them talk about deceased loved ones/careers/the war–and enjoy listening
  • Don’t get caught up in the million question game
  • Don’t take their outbursts seriously
  • Do what’s right and don’t let them manipulate you
  • Provide what they like as much as possible (likes will eventually fade)-food, music, art, sports
  • Introduce yourself and who you are–daughter, nurse, etc. every time you see them (If they’re forgetting who people are)
  • Don’t be offended when they forget who you are to them–even if you’re their wife of 50 years
  • Don’t take it personal if another person, animal, or inanimate object seems to make them happier than you do–it’s just this wacky disease
  • Know that they love you even when they can’t verbalize it
  • Remember for them. Write their stories, sing their songs, play the music they loved when they were dating
  • Keep a watchful eye on them in the hospital and care facilities–no one will pay attention and catch mistakes more than a loved one
  • When the end comes, give them your verbal permission to let go
  • Stay up beat. They need you more than ever

Don’t get me wrong–I’m all for falling apart, so you’ll need to fall apart every now and then.

But fall apart in the closet, in the shower, in the car. Scream, cry, beat the steering wheel. This is a mean son of…, and you have every right to be angry at this disease. That’s important.

Then go on. Occupy your thoughts with a song, a new recipe, the color you’ll paint your bedroom next month. Don’t abandon your marriage or your kids or all your hobbies. You need a life (however small it may seem to shrink).

Don’t dwell on this disease–that’s giving it way too much power.

It is what it is.

Eventually, you’ll reconcile yourself to Alzheimer’s. You will if it hangs around enough to absolutely wear you out. Reconciliation isn’t the same as giving up. It’s about allowing.

You can fight it–beat your chest and beg–but it won’t let go.

So laugh at the crazies, hug and hold hands as much as you can. Scream and cry when you need to.

Create your own village of support, and be “okay.”

I don’t know where you are–if your loved one just got the news and you’re still reeling.

Or maybe you’re in your tenth year and your mom’s in a care facility and she has absolutely no connection to reality.

No matter which case, you can’t get to any level of peace without going through the fire.

You will find your way. You will have a good moment, an allowing moment here and there–when life and your loved one–and all that you’re going through is ironically, “okay.”

Oh, and about the gal who ran out of the conference crying?

I met her–and her mom walking through the mall last Christmas. She introduced me to her mom–with tenderness and pride.

I’m Carol O’Dell, and I wrote Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir. It’s available on Amazon and in bookstores.

I hope you’ve enjoyed this blog and will visit again.

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