Posts Tagged ‘palliative care’

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

specifically, the aging parent.

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

You need to put yourself in their shoes.

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

I don’t blame you. Me neither.

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

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

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

No one wants to give up their independence.

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

I don’t want to be a burden. 

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

Ad you still have much to give.

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

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

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

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

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

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

Have you heard of the aging in place movement?

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

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

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

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

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

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

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

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

(consider one or more of the following suggestions)

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

Bottom line:

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

Adapt your house to suit your aging needs.

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

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

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

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

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

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

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

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

Carol D. O’Dell, and I hope you’ll check out my book, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon, other online stores and in bookstores. Kunati Publishing

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


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It doesn’t matter your cultural or religious background–it doesn’t matter if you’re wealthy or just barely getting by, there are three concerns at the end of life most people share.

They’re heard by chaplains, hospice workers and volunteers, and by family members who gather around those they love and try to make the last weeks, days, and hours of a person’s life as comfortable and as meaningful as possible.


Here are the three biggest concerns at the end of life:

  • I don’t want to be a burden
  • I don’t want to be in pain
  • I don’t want to lose control over what’s done to me

I don’t want to be a burden.

As a speaker/facilitator in the field of caregiving, I hear this concern all the time–and it starts long before the end of life.

In fact, I heard it from my 25 year-old daughter. She said she’d rather go into a care facility when she’s older because she doesn’t want to be a burden. It’s a sad reflection on society to think that growing older or needing help to get around is equated with being a burden. (I didn’t teach her this, by the way :))

There’s a lot not being said here:

I don’t want to be dependent. I don’t want to be vulnerable.  I don’t like others telling me what to do. I don’t want to be in the way. I don’t want people to resent caring for me. I’ve dealt with the elderly and infirmed and I don’t want someone to have to do, to sacrifice what I did. I’m scared. I

But what if you’re not a burden?

What if caring for you is viewed as a privilege?

What if you plan enough ahead of time and arrange for the added/needed help so that family members do less physical work and can simply “be” with you–enjoy your company?

What if you do all that you can do now–health wise–to be strong and mobile and live longer in good health? (there are no guarantees on that one).

What if you have something valuable to offer–even in your last years and months?

What if even your dying is considered sacred and something to treasure?  (even if it is hard)

What if, by allowing us to witness your end of life, we learn how to handle our own?

Who else will teach us?

I don’t want to be in pain.

No one does. Certain diseases cause more pain than others.

I can’t promise you that you won’t be in pain.

I can’t promise you that the end will come quick or be sweet–or even meaningful in the sense that sometimes we romanticize certain events and imagine them in a glowing, fuzzy cinematic light with all of our loved ones gathered and all getting along and tears and smiles and kisses and we can be coherent and see them all and hold this wonderful moment for all eternity…and it isn’t always like that.

I can tell you that hospice in particular will do everything they can to keep you pain free.

Palliative care is better than ever–there are all over salves that numb you, take away the aches, meds to reduce fever and chills–but many of these medicines will gork you out. You may sleep a lot. You may not be fully aware of time or of your loved ones coming and going. You might be pain free, but there might be a trade off.

All I can say is that by knowing this now, you can come to some level of acceptance. That’s all I can offer you–or me. I can’t say how I’m going to go–whether it will be many years from now or any day.

I can’t say whether the end of my life will be peaceful or tragic. I just have to trust–and do all I can to attract peace.

But I do know that whatever I believe about the hereafter, eternity, heaven…it will be that I will not be in pain. I will be in peace. I will not carry the pains, hurts, and sorrows of this world onto the next. And that brings me comfort.

I don’t want to lose control over what’s done to me.

Isn’t it amazing that one of the last questions/concerns we have before we leave this earth is about trust?

This teaches me one thing–I better get to dealing with my trust issues now.

Trust is the underlying factor that determines the success of any relationship–marriage, friendships, communities–it all boils down to, “Can I trust you?”

The answer isn’t “Yes, I can,” or “No, I can’t.”

Trust isn’t about finding people who won’t ever let you down.

Trust is knowing they will–in some way or another–and being okay with that.

Loving them any way. Trusting any way.

Choosing and then living in trust. Not trust in others. Perhaps it’s trust in yourself.

Trust that you’ll be okay. Trust that you don’t always have to be in control.

It’s also about trust in something bigger than you–in God, faith, the universe, the good–whatever you choose to call it. Trusting that goodness will come your way. Trusting that the universe is out to help you.

In the end, we all know that death will come. Perhaps there will be pain. Perhaps I won’t be able to say when it will happen, where I’ll be, who will be around me, what care I will or won’t get. And that somehow I can still believe that it will be all be okay.


But there is one more lesson here…

There is a lot you can say about the end of your life–but you better say it now. Talk to your loved ones. Write your ethical will. Fill out that living will. Say what it is you want. Appoint that guardian or family member to speak for you when or if you can’t.

Say all the I love you’s now. Go on those dream trips. Make memories. Laugh, cry, make love, sing, dance.

You want to not be a burden?

Start now. Invest in your relationships. Call your loved ones and listen to their day to day problems. Spoil them with your time. Go for walks and hold hands. Tell them how very proud you are of them, of the kind, good people they’ve become–then they won’t think you’re a burden.

You want not to be in pain?

Don’t dwell on pain now–physical or emotional. Live “pain-free” by practicing forgiveness, letting go and laying old issues down. Pain thrives off tenseness, tightness, and focus. Pain therapists use many techniques to help their clients manage pain–laughter therapy, engaging the mind on something bigger, more interesting, acupuncture, yoga…by letting go of pain today, we don’t attract it tomorrow.

You want to not be hung up on control?

Start trusting today. Take a risk. Fail. Laugh it off and try again. When you feel like a knotted fist inside your gut, recognize it and choose to trust. Give someone a chance. Give them a second chance. Give yourself a chance. The person we least trust is ourselves. We mistrust our own goodness. We are our own worst critiques, our own biggest doubters. Start with small affirmations–say them out loud in the car or in front of the mirror:

“I trust my own good heart.”

The biggest concerns of life are no surprise–they’re our biggest concerns every day–when you come to think about it. Every day, we’re given a chance to face our fears–to see our own good–and the goodness around us.

If you’re a caregiver, and you’re with a loved one who is coming toward the end, reassure them–let them know repeatedly that they are loved, that you will do all they can to make sure they’re not in pain, that you will honor their wishes, you will be there–steadfast. They will not be alone. Each time you say this to someone else, you say it to yourself.

I know as a caregiver this time is scary.

You don’t know how. Perhaps this is the first time you’ve faced death in an intimate way–with a family member this close. I was just like you–my dad died in hospital–and I was facing the death of my mother in my own home. I worried if I’d be okay–if I could handle it–emotionally.

IYou will find your strength and resolve.

You will keep your loved one safe–and honor their life and their death.

You will give them the dignity they deserve.

Even though you may feel like running, you will be brave. You will be there for your loved one–and it will change how you perceive life–and death.

~Carol D. O’Dell

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

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Boston Legal has a new storyline. Denny, played by William Shatner, has Alzheimer’s.

What’s great is that Denny is and always has been a bigger-than-life character who says and does outrageous things, is and was a shameless but rather harmless womanizer, and while he’s irritating and embarrassing, he’s brillant as a lawyer, and endearing.

Sounds like many people I know who also have Alzheimer’s.

Alzheimer’s is the great equalizer. I was recently talking to a support group, and one woman’s husband had been a construction worker all his life, and another woman’s husband was a lawyer and taught at Yale. Both had Alzheimer’s, and the women sat next to each other sharing comfort and support. It didn’t matter “who” they were or what they did. On that day, what mattered was a strength, love, and committment their family members gave that kept them going.

Alzheimer’s may alter a person’s personality, but the true sorrow comes when it obliterates it.

This usually happens toward the end stage of this disease, in stage six or seven, in years three to eight, depending on the person’s age and other complications.

As frustrating, scary, and utterly exhausting Alzheimer’s is, the real sorrow comes when your loved one is truly lost–lost to movement, thought, and emotion. Then, you long for the cantankerous days, the fights, the chaos because that’s when they were ironically, alive.

Denny Crane is played flawlessly by William Shatner, and his Alzheimer’s was not addressed at first. You simply knew what he said or did was…off. I have to admit, I thought of it, but I have experience. He’s young, in his sixties. Less than 10% of the people who get Alzheimer’s get it that young, and the numbers increase with age. Those above 85 years old have a 50% chance.

Denny’s quirkiness covered his dementia.

Are you blaming quirkiness, fussiness, meanness instead of looking at an underlying problem/issue?

Then, Denny was diagnosed, and they had several episodes of dealing with this as a law office, as co-workers, as lovers, and as friends. Last week’s episode dealt with Shirley Schmidt’s  father (she’s played by Candice Bergen) who was hospitalized and sufferiing with the last stages of this horrendous disease.

Shirley asked for a morphine drip. That’s usually considered palliative care and is used by regularly by hospitals and hospice and is reserved for diseases such as cancer that usually have a lot of pain. Alzheimer’s isn’t known for its physical pain. The nurses and doctors knew her reasoning.

Morphine drips are also used to allow a person to die. The dosage is increased, and the person simply drifts out. It’s considered humane for someone who is suffering.

The doctor’s refused. I’m not surprised. Candice got a court order. She had to tell Denny he couldn’t argue the case. His best friend, Alan Shore, played by James Spader argued the case.

Is physical pain the only kind of pain there is? Is it any less ethical to give morpheme to a person with Alzheimer’s who can no longer eat, communicate, or swallow on their own?

 Alan became quite empassioned. He couldn’t help it. He related it to Denny, to his best friend, and in many ways, you could see he was grieving what will come. What would he do if it was Denny? At the end of the closing, he told the court that his best friend had early stage Alzheimer’s, and that he had already vowed that no matter how hard it would be, he would find a way for his friend to leave this world with dignity.

They won the case. Shirley’s father was allowed to pass quietly and peacefully with his daughter by his side.

The last scene of Boston Legal always takes place on a penthouse patio overlooking the city. Denny and      are smoking cigars and drinking scotch and pondering life. Two best friends who may eventually become caregiver and care receiver.

Denny tells Alan that he heard his closing arguement, and then, like a couple of ten year-olds, he asks if his best friend would like to spend the night.


I’m not trying to get into the ethical debate of euthanasia, mercy killing, or anything else you want to call it.

What I wish to say is that Alzheimer’s is no longer a disease that’s mentioned in whispers.

It’s rippling ( or ripping) into our homes, our communities, our movies with such recent hits as Oscar nominated Away From Her, and now it’s making television.

What Boston Legal is doing right is that they’re not in a hurry with the storyline and so far, they haven’t written off this complex and entertainig character. 

They had 9.29 million viewers last week.

They’re showing the progression of Alzheimer’s to 9.29 million viewers.

This may not be their only agenda, but they’re a messanger. all the same. 

They’re portraying a character you already love, and love to hate, and now, after years of this crazy, quirky, shock-talking guy you care about whether you want to or not, and he hapens to have Alzheimer’s.

He’s your Uncle Joe, and this hits you in the gut. If he can get it…

As Alzheimer’s increases, I hope the media follows producer’s David E. Kelley’s lead and creates intelligent, vibrant discussions iand storylines in which Alzheimer’s is a part of–something we can learn, talk about, laugh about..and even cry.

~Carol D. O’Dell

Family Advisor at www.caring.com

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

available on Amazon and in most bookstores



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Statistics show that people spend about 4.5 years caregiving.

The average person with Alzheimer’s lives 5-8 years. That means there’s some time they might not be receiivng care–the early years before they’ve been diagnosed when they’re able to cover it up, make excuses, or their family members are just too inundated with work and children to even notice.

But once you start caregiving, there are four major cycles. Think of a pie cut in fourths.

Something has happened. Mom or Dad (or your spouse, sibling, or even child) has had a debilitating accident, a heart attack or the onset of another illness. Perhaps a bout with cancer. They need you and perhaps for the first time, you realize you may not always have them in your life.

The first slice of the caregiving pieis when you’re just the watchful eye in your loved one’s life. They may still  be living at home, or they may plan to return home after things get a little easier. After the hospital or rehabilitation stay, or initial diagnosis, you find yourself calling them more often, spending your nights or weekends with your loved one. They might even choose to downgrade at this point–move in with you or into an apartment, or into a gradated living situation (they can trade in their home or apartment for assisted living when the time comes). You might do some chores for them or accompany them to the doctor so you can see what’s going on. On the whole, your life continues on (after the big bump in the road) with just a few more calls or visits added to the norm.

This stage can last for months or even years depending on your loved one’s age and the progression of the disease.

Emotionally, it’s the first timeyou’ve realized your relationship and responsibilities have changed. You feel a twinge at the thought that your loved one won’t always be in your life. You begin to value the time you have together, and although you worry a bit about the future, you don’t do a whole lot about it–in part, because of denial–it’s just not that bad yet and without saying it, you need things to go on status quo. Soon, I’ll check into care facilities, soon, I’ll sit down with their doctor and have a serious talk about the progression of this illness, soon, I’ll gather community resource information…

Complications. Perhaps another heart attack, more than the occasional forgetfulness, or another diagnosis–now your mom or dad (or spouse or sibling) has two major issues.

You’ve entered the second and third quadrant of your caregiving cycle. One melds into the other as your role as a caregiver increases. You go from spending half your time to most of your time caring for your loved one. They maybe wheelchair or walker bound. If they have Alzheimer’s or other neurological disorders, they may not remember you anymore. You’re questioning if you can still work or if your loved one needs full-time care. Maybe you’ve hire home health care during the day and you cover the nights. You might spend weekends at their house or you may need to go ahead and move them into an assisted living facility.

Emotionally, you now consider yourself a caregiver and no longer just a son or daughter or spouse. You’re doing things regularly that a normal, healthy person would do themselves and that makes you a caregiver . This might include financial or medical management, clothes and body care, wound care or injections for diabetes. You’ve learned a lot, and whether you wanted to or not, you’ve had a crash course in caregiving. You might not know all the community resources, but you’ve pieced together a few. You’d like to know more–more about Medicare, more about what their insurance will and won’t cover, more about the disease–but who’s got time? You’re juggling your own marriage, kids, and life. You’ve felt a real strain on sleep and relaxation, and it’s even hard to relax any more. You may have already cut your hours back at work, or quit–and if not, you know the day is coming. You think about the future–too much.

This stage can last weeks or years–and it is insidious and draining, but you know your loved one needs you, so you just have to limp by. 

It might be like a slow drip or another traumatic event, but caregiving has taken over your life. You’re now a full-time caregiver. This doesn’t mean that you don’t still work–maybe you have to, but all your time, energy and thoughts are consumed with the needs of your loved one.

The fourth quadrant of caregiving is the most difficult. Your life as you once knew it over, and it’s been over. You’re consumed and numb and most days, you just wish it were over. You ache for your loved one who is now incapacitated. You do pretty much everything for them. They are either bed bound, wheelchair bound, or bound in their mind no longer connected to reality. Your days and nights are spent either giving or managing care. Your health and relationships are suffering, and you know that there’s no turning back–their illness or debiitation has increased to the point of no return. Still, you love them, find moments here and there that are sweet, but the exhaustion and frustration is bone-deep.

At this point, your loved one either enters hospice or if you have not done so already, they enter a care facility that may also include a memory disorder unit.

Emotionally, you admit defeat. You’ve done all that you can. Guilt and regret are plenty, but you now surrender. You can’t or won’t do it any more. You have a difficult time talking to anyone about this. You feel like a horrible person, but you want your life back. You want and need it to be over.

Surprisngly, your loved one may live weeks, months, or years.


I would love to give you a different outcome. If your loved one is young or suffered from an accident, they may be able to rebound. For the extreme aged, or for “life limiting diseases,” your loved one will not come back to you–not like they were. This sounds bleak. After the months or years you’ve spent caregiving, and this is the end?

Yes. But not all is in vain. Good has come from this, and while yes, you’d do some things differently, you’ve learned a lot. I know you can’t feel it now. You can’t feel anything. Quit. Stop. Either get hospice or get them into a facility. You need to stop. You’re a good, loving daughter, son, wife, husband. I know you don’t feel like it and if anyone knew what you’ve been thinking…

I know, and I’m telling you, you’re still good.

It’ll take a long time to recover, but you will. Your loved one will pass away, eventually. Make peace with that–with who they are, who you are, and with your journey. Rest. Let go. Yes, keep a vigilent watch as others take your stead, but it’s time to sleep better, eat better, and rebuild your life.

For those whose loved one’s live on, the caregiving cycle repeats in a way. You’re more of an observer as your loved one continues on in a care facility or on through hospice. You simply can’t do it again. Not in the same way.

My mother took that last turn and I called (and insisted on hospice). I chose against a feeding tube as she forgot to eat and swallow. Hospice came in March and she passed in June. You will have to find your own way, your own peace. Go deep in your own heart. Talk to a chaplain or someone you consider wise. I know that each person must follow their own heart, but I do implore you–at some point, you will have to let go.

It took several years after my mom’s passing to come to a place of deep peace. Some days, I felt as if i had killed my own mom, and if it weren’t for hospice reassuring me that I was continuing to show my mother love, I would have crumbled. For those in pain, there’s palliative care, which is such a blessing when needed.

I don’t write all this to depress you. I wish I had seen the bigger picture. I wrote Mothering Mother so that others wouldnt’ have to go it alone.

~Carol D. O’Dell

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

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After all the caregiving, all the hospital stays, doctor visits, baths, pills, and exhaustion, you have one more hurdle–the dying process itself. One of the toughest decisions you’ll have to make is whether or not to insert a feeding tube.

This occurs when you’re at your lowest. Beyond exhausted. Numb.

You call hospice and more decisions need to be made.

Do you have or need to make a Do Not Resuscitate order?

Do you keep your loved one at home? Do you place them in hospice “hospital”?

Do you choose to put in a feeding tube if they can no longer eat/swallow…or do you not?

I chose not to.

My mother had Alzheimer’s. She had lapsed into a coma. A coma isn’t exactly what most people think it is. It’s not that I couldn’t rouse her for a few moments with a lot of effort, but then, for what? For her to be aware of her surroundings? Aware of me?

I began to say my good-byes. I didn’t need her “awake” or alert for this. I could trust our spirits to do the job. I whispered my prayers, my good-byes. Forgiveness was no longer an issue. I felt at peace–with our lives, our journeys, our mistakes. I read her a Psalm, and kissed her forehead. I urged my family to say their good-byes.

Hospice came to our home and did their assessment. I chose not to do a feeding tube.

Why? She was 92 years old, and had had Parkinson’sfor close to 15 years, and active Alzheimer’s for the last three, if not longer. I couldn’t see sustaining this life when she could no longer remember to eat, to swallow, to know anything or anyone.

Still, wasn’t it wrong not to feed someone?

Two books that helped me were How We Die by Dr. Sherwin Nuland–this book was my Bible, and A Handbook for Mortals Handbook by J. Lynn and Harold

Hospice assured me this was natural. The body would shut down itself systematically. It would finish up, just as if it were the last day at work, and it would close shop. They assured me that “starvation” is different. We were not keeping food from her that she wanted or needed. She was not hungry or hurting.

I needed their reassurance. I wanted to bolt. To call 911, to have them bring in paddles and electrical equipment and scream, “STAT.” I needed them to jolt her back to life.

Could they? Had I been watching too many ER re-runs? Life ends. It does. At some point, it ends.

Hospice had set up a bather, but after a couple of sessions, I told them to stop. It was too invasive. I did a little warm sponge bathing as I changed her diaper, but I chose to keep things quiet, in the flow, and peaceful. The weeks waned on.

As much as I grappled with this decision, I couldn’t bring myself to change my mind–and I was the one sitting by her bed 24/7. I watched for signs of pain or discomfort, for her to rouse, to ask for something, even with her eyes. We remained steadfast, me in my vigil, her in her dying. ING. The act of doing something. Present tense. She was dying, not dead.

It took three weeks. I swabbed her mouth with Vaseline, I moistened a cloth and drizzled water into her throat. She’d gag. I stopped. Still, I feared that someone would find out about the horrible thing I’d done. How could I not feed my mother? I wanted to go confess. For someone to tell me I was bad and then to rectify this horrid situation.

The hospice chaplin came. More reassurance I was doing the right thing. I needed it.

She prayed, told mother it was okay to let go now, that I’d be fine. She’d be fine. Go on to heaven, go to your beloved Willie (my dad). That seemed to help us both. Funny, how we have to ask and receive permission to do anything in this world, especially die.

I sat. I prayed. A little. You think you’ll be super spiritual. Quote scriptures. All I could do was just survive. My prayers were not words. Maybe they were there in my molecules, but I couldn’t even form thoughts.

I thought about that tube. What it might be like if she lived a year or two like this, with a tube in her stomach, with me dumping liquid sustenance in three times a day. Even in my thoughts it seemed futile. More futile than sitting still and witnessing death. I had to allow this to happen. Allow my mother’s passing. Allow.

I wrote my way through it. My pen and journal had been my guide and I needed it more than ever. No one could tell me what it was like to sit beside someone dying. I couldn’t find it. I had scoured literature, medical books, self-help, and they all seemed to skirt around it. I needed a step one, step two. I needed insight, foresight, hindsight.

HOW DO I DO THIS? I asked God, myself and the page.

My mother passed away quietly. A few gulps. Three very long weeks. It took all my resolve. It took fighting guilt, regret, fear, sorrow. It took all I had.

In the end, it was just my mother and me on a warm June day. I held her hand. Kissed her.

Allowed her to die.


The first year was hard at times. The questions. Did I do the right thing? I did. I know I did. Still, I felt like the police might break down my door in the middle of the night and haul me away. I had let my mother die. This may be a natural part of grieving, to question yourself, to mull over guilt, but you have to move past it eventually. I had to trust and believe that I was not in charge of my mother’s fate.

How arrogant we are to think we have that much power.

Slowly, I began to be okay–with us, with our time together, with allowing, with not inserting a feeding tube. Slowly, I came to a deeper place of peace, acceptance, and resolve.


Each family is different. Each situation unique. If it had been my husband, if my mother wasn’t 92 and at the end of Alzheimer’s, if it had been my child, I might (pretty sure I would ) have made a different choice.

It came down to this:

I chose against a feeding tube because I couldn’t justify what I would be bringing my mother back to–I couldn’t change the facts–she had end-stage Alzheimer’s and Parkinson’s. I couldn’t make that go away, and prolonging it seemed even more cruel than the decision of not putting in a feeding tube.

Dying is part of living. We just don’t have much experience at it.

Once you have grappled with your choice and know that it’s the right choice, just a hard one–then trust.

Trust your gut. Trust your good heart. Realize that your peace about this will come and go, and eventually, it will stay.

~Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle


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You think your doctor will tell you when your loved one needs hospice?

They should know, right?

Not always the case.


 Three signs That Indicate Your Loved One is Ready for Hospice:

1.  The disease has progressed to the point that there’s no cure, and you’ve (and your loved one) has decided to manage the pain and be comfortable and not actively seek to treat the disease.

2.  You and your loved one chooses to forego any further testing of hospitalizations–by this choice, you allow the dying process to happen naturally. Body functions/organs may begin to diminish.

3.  You’re ready to begin to let go, say good-bye and follow the oath of hospice, which is to “neither hinder, not hasten death.”

Visit www.nhpco.org, website for National Hospice and Palliative Care Organization for more information.

I knew my mother was ready for hospice before any of her medical team suggested it.

I had asked my mother’s doctor about hospice (Alzheimer’s and Parkinson’s) months beforehand and was “poo-pooed” away. Mother had a great way of rallying herself together for doctor visits, but I lived with her, cared for her 24/7, and I was beginning to see a shift.

I knew my mother had taken a turn. I knew that both of us were over the tests, treatments, and hospital rigmarole. I knew, in essence, that she had given up the will to live.


Whether your loved one has cancer, Parkinson’s, heart disease or dementia, whether they’re young–or old–it’s hard to let go. Even when you know they’re suffering and you want them at peace, it’s hard to let go.

What’s the difference in hospice and palliative care?  

First, the working definition of hospice or palliative care is: your loved one has a “life limiting condition.” Their words, not mine. While it’s technically correct, and I can’t think of a better way to say it, it still sounds odd.

In layman’s terms, most people think it means your loved one has a diagnosis of less than six months to live, and with some hospice situations, a year. While that’s technically true, some people receive hospice or palliative services for much longer.

The difference in hospice and palliative care is that palliative care specializes in the relief of the pain, symptoms and stress of serious illness.

Hospice care can provide palliative care if your loved one needs it.


Hospice focuses on terminally ill people who no longer seek treatments to cure them and who are expected to live for a year or less.


“Anyone can inquire about hospice services. You or your loved one may call a local hospice and request services. The hospice staff will then contact your physician to determine if a referral to hospice is appropriate. Another way to inquire about hospice is to talk with your physician, and he or she can make a referral to hospice.Hospice can begin as soon as a ‘referral’ is made by the person’s doctor.” (from the National Hospice Foundation)

 The hospice staff will then contact the person referred to set up an initial meeting to review the services the hospice will offer and sign the necessary consent forms for care to begin. Usually, care is ready to begin within a day or two of a referral. However, in urgent situations, service may begin sooner. 

  When is the right time to ask about hospice?

Now is the best time to learn more about hospice care and ask questions about what to expect. Although end-of-life care may be difficult to discuss, it is best for loved ones and family members to share their wishes long before it becomes a concern. This can greatly reduce stress when the time for hospice becomes apparent.

When is the right time to ask about hospice?
Now is the best time to learn more about hospice care and ask questions about what to expect. Although end-of-life care may be difficult to discuss, it is best for loved ones and family members to share their wishes long before it becomes a concern. This can greatly reduce stress when the time for hospice becomes apparent.


Even the medical community denies and avoids death. Accepting that the end is near, that you will begin to have to let go, to sit quietly by a loved one’s bedside, to not go into “heroics” and throw on the paddles or rush to the ER is very, very difficult.

 The last month of my own mother’s life was in many ways one of the most peaceful times of my life. It was also excruciating. As a society, we’re no longer taught to sit with death.

 We’re no longer taught to let nature take its course, to relinquish our control. Learning to do this, to hear the clock tick, to let my family come and go as I sat by my mother’s bed and wiped her brow–

It was a finishing of something I had begun.

It was bone deep and cathartic, and gave me time to think and process.

 I began to see the whole of my mother’s life. I understood that both of us need to let go.


Hospice isn’t about giving up. It’s about giving in.

~Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle





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