What Do You Do When You Want to Give Up Caregiving, But You Can’t

“I quit!” That’s what you’d like to say some caregiving days.

You feel like crap. You’ve gained a ton of weight. Your life consists of round the clock care–oftentimes for someone who doesn’t seem to appreciate it, and the only way out of this is…death. Yours or your loved ones–not great choices. You don’t know whether you feel like screaming or crying, but running away is definitely topping the list.

You’ve checked into other forms of caregiving–hiring more home health care, nursing home care–both expensive options.  The economy isn’t exactly helping these days.

It’s not as if you can just stand up and say, “I don’t want to do this anymore.”

Or can you?

Isn’t everything in you is screaming that very sentiment?

Not that you don’t love them. Not that you don’t want them to be treated with the utmost care and dignity, it’ just that it’s never ending. There’s never enough of you.

How to Caregive When You Want to Give Up:

• Embrace your inner Eyore. Sometimes it helps to be grumpy–to get it out of your system. To just let all that negativity out–give yourself permisssion to be a real curmudgeon–especially if you’re always  the “nice,” the “up” one. Sometimes we make caregiving look too easy. It’s time to tell it like it is!
• Change one thing. Most caregivers do more than they need to. They don’t say no, not even to the trivial things. It’s time to change that. What’s one thing that drives you nuts? Stop doing it. I got so tired of rechecks. Every doctor wanted to see mother–who had Parkinson’s and could barely walk–and Alzheimer’s back in six weeks. Forget it. I stopped the rechecks. We went only when she needed new medication or had a new problem. Having power in this one area felt so good!
• So quit–for five minutes, or five hours. If you’re being treated ugly or you’ve just had it, say it–“I QUIT!” Then walk out of the room. Walk out the front door. Get your keys and purse and sit in your car. You may not have to or need to go any further than that but I guarantee you, you’ll feel amazing!
• Pretend you’re free. Take it one step further, what would you do if you weren’t caregiving today? Go to the zoo? Zip over to get your hair done? Take a nap? Can you imagine–down to the smell of ammonia and nail polish? Stay in that zone–where you truly believe you’re free–for the next five minutes or five hours–or whatever time you can afford yourself. You quit, remember? So act like it. Give your brain cells a rest.

Why go to all this trouble of pretending? Isn’t that for kids?

Neurologists are finding that we can trick our bodies–by visualization–and if you’re a great little actor/actress your body actually thinks you did that amazing thing–skiied, won an Emmy, or…quit~! It gives your muscles and your mind the break it’s longong for. Don’t be surprised if you kind of miss caregiving–it’s addictive. But you may feel this huge sense of relief, even if it’s only temporary.

Why be so bold? Because you should be caregiving because you want to. Yes, because you’re needed, but also because you love someone and you genuinely want to make their life better.

When you quit it’s like recalibrating something inside you.

When you walk back through that door–do it as a choice–with your heart leading the way.

This won’t solve all your issues. It won’t miraculously give you 20 hours sleep or magically make Alzheimer’s disappear, but it will relieve a little bit of angst.

It  will remind you that each day you must choose to love, to give, to be there for yourself and those you love.

When we feel stuck we fall into resentment –or worse, apathy.

So when you need to, quit, give up, and start anew.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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Hospice, Death and Dying: How Do You Know When the End is Near?

There came a time when I knew my mother was dying. It wasn’t necessarily a physical symptom, it was a gut feeling. I was scared–even frantic. How do I do this? If you’re a caregiver it’s likely that you will eventually face the last turn in road. Your loved one will entering the dying process and as death draws near you may call or be recommended for hospice.

I felt sad, cornered, overwhelmed, grieving, angry, panicked, even numb, and if I’m really honest–almost relieved. I was not only losing my mother, I was losing a part of me.

How do you know when the end is near?

Do you wait for a doctor or nurse to tell you?

Do you check into the hospital?

Who do you call–what do you next?

All I know is that I had been caring for my mother for a number of years. I was the one who fixed her meals, bathed, her, listened to each breath, monitored everything from her moods to her medicine.

When no one else knew–I knew.

I asked the doctor if we were ready for hospice. He hedged. A few weeks later, I insisted.

Hospice came in and although my mother qualified they didn’t think that death was imminent. Still, something in me knew it wouldn’t be too much longer.

Mother rallied–I felt duped–then she plunged again. In less than six weeks from the time I made that call my mother took that last turn. For three weeks or so, she lingered. She forgot how to eat–and I let her. By that I mean that I chose not to insert a feeding tube. That’s a highly personal family decision, but it was the right one for us. It wasn’t an easy decision by no means–and I knew I’d be the one to witness every breath, every moment. And I took on that role willingly.

I received one of the greatest gifts of my life in those quiet, grueling weeks. My mother taught me how to die. She gave me front row seat–something not many of us in our modern society gets the privilege of witnessing. But I ask, how else will we learn?

How do you know when the end is near?

It’s instinctual, guttural, spiritual, biological–but you’re also subconsciously weighing every piece of information you’ve gathered–as spouse, daughter, son, or friend. You’ve been there all along and even if you’re not medical, you know when a shift has occurred. You’re picking up on cues you’re not even aware of.

Trust that you may know before anyone else knows–and you might not be able to explain why.

In the end I was fully present. Scary–yes. But the frantic fear was gone. It was tough beyond words, but it was also good–necessary–and for me, holy.

Few of us have another way out of caregiving, especially for our elders. We all must die.

Knowing the end is near is a rare gift–one I’m profoundly grateful for.

Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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UTIs (Urinary Tract Infections) Don’t Let Your Elder Suffer in Silence

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

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

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

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

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

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

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

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

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

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

This is a bladder infection.

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

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

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

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

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

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

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

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

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

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

And they often go untreated.

Why?

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

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

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

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

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

 

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

 

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

 

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

 

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

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

·       Nocturia: Need to urinate during the night.

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

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

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

·       Hematuria: Blood in urine.

·       Pyrexia: Mild fever

·       Cloudy and foul-smelling urine

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

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

·       Protein found in the urine.

·        

Kidney Infection Indications:

                All of the above symptoms plus:  

·       Emesis: Vomiting.

·        Back, side (flank) or groin pain.

·       Abdominal pain or pressure.

·       Shaking chills and high spiking fever.

·       Night sweats.

·       Extreme fatigue.

 

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

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

 

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

 

 

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

 

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

 

Don’t let your elder suffer in silence.

 

~Carol D. O’Dell is the author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated blog at www.OpentoHope.com

www.kunati.com Publisher

 

 

Helpful Websites:

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

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

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

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The Four Cycles of Caregiving: Where Are You?

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

available on Amazon

www..mothering-mother.com

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