When Caregiving Takes Its Own Sweet Time, Pace Yourself for the Long Haul

I have the privilege of meeting many, many caregivers–and some of them have been at this for a long, long time. Some caregivers are caring for both parents, some a spouse with a chronic disease, others, an adult child who is disabled or challenged. These are the silent heroes. These are the quiet ones who have cared for others for years, even decades. How do they do it?

I’ve had many people say, “I couldn’t do what you did–care for your mom with Alzheimer’s.”

I didn’t know I could do it either. Most f the time, caregiving felt like I was the tin can tied to the back of a fast-moving car. But when I realized I might be doing this awhile, I knew I had to stop being drug behind and began to stand up and formulate a big of a plan.

As caregivers, we can’t always look ahead. We’re too overwhelmed with the here and now.

We can’t know what’s ahead either. Who would sign up for this? You do it because you love someone. You do it because you have a deep conviction that this is right and good. Many times you do it because no one else will.

But if you can take a moment from all the day-to-day responsibilities and take a look at the bigger picture (aka, your life!) Pacing yourself for the long haul is important. Caregiving is much like a marathon–it’s not that impressive to out in the lead at the beginning of the race. That’s easy. You have the energy and the enthusiasm to leap out of the gate. There’s that early exhilaration factor.

A marathon is a test of endurance. So is long-term caregiving. You get “over” trying to impress anybody. There are days you feel on your game–and many days you’d rather not talk about. You go through times of disillusionment, times of resentment, and then the good times roll back around again. You are reaffirmed. You’re needed, and you’re good at what you do. Confidence returns. You circle this mountain many times over.

Pacing Yourself Through Caregiving:

• Get off the drama bus. At first, everything’s a big deal–every ER visit, every “near-death” event. But after awhile you learn that you can’t exert that kind of emotional energy over and over. Learn to reserve yourself a bit–because it’s that reserve tank you’re going to need.
• Be something other than a caregiver. It’s so easy to lose your identity in a role–any role–mother, teacher, but you are so much more than what you do. Keep up something you started long ago–gardening, your membership in the DAR, renew your teacher’s certificate. Have a well-rounded opinion of yourself and realize that you bring all the aspects “you” to your caregiving role.
• Change is the name of the game. It’s easy to get comfortable with our routine, but as monotonous as caregiving looks, it’s not. Change is inevitable, and sadly, when we’re talking about disease and the aging process, our loved one’s health is most likely going to continue to deteriorate. By realizing this, you avoid becoming so rigid that you have a hard time adapting.

Pacing yourself isn’t always easy. It’s not like you can pick your times to take it easy. Sometimes you have to dig deep and exert all you have. And yes, much of your life may feel dictated to you, but the kind of pacing I’m talking about is more about your attitude, your flexibility, your overall perspective of life–you have to decide how you handle the challenges of caregiving–and of life.  

In the words of Abraham Lincoln, “Most people are about as happy as they makes up their minds to be.”

Dad Won’t Quit Pacing! What You Need to Know About Agitation and Alzheimer’s

Alzheimer’s usually strikes when someone is older–a time in their life when people typically slow down.

Many Alzheimer’s live on the edge–always anxious, overly alert, agitated, and sometimes mean.

A common sight in a memory disorder unit, facility, or center (they can be called different names) is to see a person walking and walking. Pacing like a caged cougar.

They never sit. They have a wild look in their eye.

Only when you see several Alzheimer’s/dementia/Lewy Body (a Parkinson’s form of dementia) all together do you realize that your loved one isn’t the only one who does this–that it must be the effect of Alzheimer’s on the brain and nervous system.

It’s exhausting to watch and even more exhausting to keep up with.

It can cause them to wander–try to slip out–and if they do, get lost.

That’s a caregiver’s worst nightmare–their loved one out side of safety, vulnerable to everything and everyone from being hit by a car, lost in the woods, or god forbid–hurt by someone cruel.

Why can’t people with dementia or Alzheimer’s seem to settle down and relax?

Agitation is one of the challeges of Alzheimer’s behavour.

Agitation and other behavoiral changes are caused by the changes in the brain–the brain is in many ways, shrinking. The delicate pistons that fire the synapse is not always firing or hitting the intended area or “target.” This can cause all kind of sensations–a person can become sensitive to sound or light or texure–they can crave it or recoil from it. There can sometimes be hallucinations, delusions, (especially with Lewy Body–which usually includes more of a shuffled walk)

A person with advanced Alzheimer’s can forget how to talk and only babble.

Many things can happen in our brains, which means Alzheimer’s will effect people differently.

What do you do if your spouse/parent/loved one paces/walks incessantly?

• If the person with Alzheimer’s becomes anxious or If it’s safe, let them walk. I know you think they’re old, their knees are in bad shape, and how can they keep doing this? It’s a need, a drive–and at this stage of the game, their knees can’t be your primary concern. Let them walk.
• Listen to the person’s frustration. Does it make sense? Can you help in some way? Does the cat bother them–or the red planter in the window? If there’s something that’s irratating them–no matter how odd–and you can move it, then move it.
• Reassure the person. Use calming phrases and let the person know you’re there for them but also realize this may not comfort them at all. Do the best you can. Know when to be firm. Say it in a kind way, but if they’re trying to get out the door, then you will have to distract and be firm–for their own safety.
• Many people (men and women) respond better to a male voice. They perceive it as the voice of authority, so consider using a lower, clearer tone–or finding a male to impersonate Barry White for you!
• Don’t use so many words when giving direction. Be clear. 2-3 words are enough. “Sit in this chair.” “Time to eat.” Don’t yell or startle them even when it seems like it is needed. It usually doesn’t work and will only make things work. You can firmly state, “NO.” Use your strong voice, not a yelling panic voice.
• Even those with brain disorders can pick up on fear or anger–it’s contagious!
• Involve the person in activities. Use art, music or touch to help the person relax. This isn’t patronizing even though it feels like pre-school. Music therapy really does work and has been documented to sooth those who are agitated. 
• Modify the environment. Decrease noise and distractions or move to another place.  Just as with a young child, you baby proof your cabins and put up baby gates to keep them from falling down the stairs. This isn’t treating your elder with disrespect. This is to make them safe.
• Keep a look out for new possible hazards. It’s amazing the trouble one person with Alzheimer’s can get into!
• Find outlets for the person’s energy. Have you been outsidein the last few days? Gone for a car ride? If this is no longer possible, then have you opened the windows? Aired out the place? Can you play ball or fold towels? Some people really need that tactile sensation. Some women like dolls. Some people respond to a small dog–for others it would be a danger (for the dog, I mean ). Can you keep a Tupperware drawer and create “jobs” for them of loading and unloading?
• Keep a sense of humor. It’s just the brain gone kaflooey. Your loved one isn’t trying to mean (most of the time) or drive you crazy (most of the time).
• If you find your patience is gone for the day, then maybe you need to go as well. Just because your loved one can’t take a walk doesn’t mean you can’t.

If you’re dealing with the later stages of Alzheimer’s, dementia and memory loss, then know that you are dealing with a massive amount of stress.

Most professionals burn out at this point, and in many memory loss units, some are advised to only work three days a week so that the stress doesn’t hurt them or ripple out to the patients and their families.

You have got to de-stress! Even if you just visit your loved one, you have to let it go after the visit.

You know how you have to go through decontamination if you are exposed to radioactive material? Visualize that.  Walk, cry, scream, eat–don’t forget to eat–but if you’re food cramming (stress eating in other words) then forbid anyone to bring Oreos or Doritios or whatever triggers you.

You’re in a more stressful job than air traffic control. Treat your body and your heart with tenderness during this very difficult time. Don’t expect to be on an even keel. Expect to cry, feel numb, zone out, not be able to talk about your experience–this is profound, and while that sounds terrible, it’s not. You can do this and do it with love and compassion. Your loved one needs you to watch over them.

Also know that this is the stage where many of our loved ones have to placed in a facility–for their safety and yours–because their needs are more than you and your team/community can manage.
It’s okay if this happens. You’ve done all you can. Say thank you for the help, for the option. Let them take some of the load. Find the best place you can. Visit often. Be vigilant and watch over your loved one–but know that it’s time to begin to let go. It’s time to allow others to help.

• Stay calm and be understanding. • Be patient and flexible
• Look for reasons for each particular
• Respond to the emotion, not the behavior
• Don’t argue or try to convince
• Acknowledge requests and respond to them
• Accept the behavior as a reality of the disease and try to work through it

It’s also important to prepare other family members before they visit.
Alzheimer’s can be very disturbing if you’re not familiar with the “quirks” that come with it. By talking about it ahead of time, letting the person know what they’ll see or how they’ll be talked to or treated–and how to react–will help immensely.

CNA’s and other elder-health professionals get training in dealing with Alzheimer’s behaviour, but sadly most family caregivers don’t. They have to figure it out for themselves. Many loved ones are placed in a care facility prematurely (or too late) because we simply don’t know what to say or do.

Alzheimer’s is kind of like the wizard in the Wizard of Oz. Once you go behind the curtain–begin to analyze what’s happening, why, and have tools and coping mechanisms–it’s not so intimidating.

These are still our loved ones.

Trapped inside every feeble or rigid body, behind every frozen face or babbling talk, is someone’s mom, dad, husband or wife.

Please visit this blog again!

Carol is the author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir. It’s available on Amazon and in bookstores.

I Feel Like I’m Going Crazy! Mom/Dad Acted Fine at the Doctor’s Office

How can a person who doesn’t remember their own son or daughter, keeps their purse in the freezer and thinks that trees are talking to them act completely normal in front of a stranger? 

It’s called social convention abilities, or social response abilities, which means your loved one who you know has dementia/Alzheimer’s, can get their act ”together” in front of the doctor or some other person and talk or act fine.

 

It can seem as if you’ve been tricked.

 

Social convention means that all those years we’ve walked past someone and said, “Hello, how are you? I’m fine” are now hard-wired in our brains.

 

We answer without thinking.

We sit up straighter when someone we don’t know enters the room, we  act polite when we’re talking to a stranger, or wave when waved to, smile, even laugh at the appropriate pause in the story.

 

Professional care providers and those who work in the mental health field know about this, but I haven’t heard it discussed among caregivers–and this is important to know.

 

A person can access this ability when they’re in a new setting or with new people (stimulation) and they can act perfectly fine when just a few minutes ago they were having a conversation with a Dwight D. Eisenhower!

 

This can be so frustrating.

You were worried, got them dressed, killed yourself to get to the appointment on time–and now they’re chatting it up with the nurse. 

 

The behavior you’ve observed at home is the “real deal.”

 

This doesn’t mean your loved one doesn’t have dementia/Alzheimer’s.It doesn’t mean they don’t need meds or assistance.

 

 

You’re not crazy, but it can feel like you are.

 

I hated when my mom did this–I felt like such an idiot for traipsing to the doctor yet again for my mother to say no, her knee didn’t hurt, no, she wasn’t having headaches. Then, they’d all look at me as if I were making the whole thing up!

 

Memory and recognition will vacillate.

Your loved one will remember who you are, and then forget. They will remember their spouse has passed, and then insist you take them to see them.

 

 

Caregivers are the bridge between their loved one and the medical world. Sometimes they’re ignored. Other times, they take over too much. It seems like you can’t get it right. No matter what you do, it’s too much or not enough.

 

Some physicians know about social convention abilities and understand it’s a normal human response to stimulus. But many doctors don’t know about this. Don’t think your doctor is well-informed about the nuances of Alzheimer’s. Unless they’re a specialist in this field, they probably don’t.

 

 

People can cover up how bad a situation is—and we’re all too willing to believe it because we need things to stay the same. We need our loved ones to be okay—but sometimes, they’re not.

 

 

Caregiver Burnout

Caregiver Burnout
By Jeanne Slayton

Do you have “caregiver burnout”?

Some signs, causes, and solutions for caregiver burnout in the Triad of North Carolina

Are you:

- Withdrawing from friends, family, and other loved ones?

- Feeling blue?

- Experiencing changes in sleeping patterns?

- Feeling like you want to hurt yourself or the person you’re caring for?

- Irritable?

- Losing interest in activities you used to enjoy?

- Seeing changes in your appetite, weight or both?

- Getting sick more often?

- Emotionally or physically exhausted?

Caregiver burnout is a state of physical, emotional, and mental exhaustion. Burnout can occur when caregivers don’t get the help they need or if they try to do more than they are able to do.

Causes of Caregiver Burnout
Caregivers are often so busy caring for others that they tend to neglect their own emotional, physical and spiritual health. The demands on a caregiver’s body, mind, and emotions can easily seem overwhelming, leading to fatigue and hopelessness - and ultimately, burnout. Other factors that can lead to caregiver burnout include:

Role confusion - It can be difficult for a person to separate his or her role as a caregiver from their role as a spouse, lover, child, friend, etc.

Lack of control - many caregivers become frustrated by a lack of resources and skills to effectively plan, manage, and organize their loved one’s care.

Unreasonable demands - some caregivers place unreasonable burdens upon themselves because they often think that providing care is their exclusive responsibility when it shouldn’t be.

Preventing Caregiver Burn-out
Find someone you trust, such as a friend, co-worker or neighbor, to talk about your feelings and frustrations. Use community resources to your advantage. Get in touch with your church, the local senior center, or such organizations as the Alzheimer’s Association.

Be willing to accept that you may need help with caregiving, or routine tasks and turn to others for help with some tasks. When family and friends ask what they can do to help, give them a task, even if it is doing the dishes while you sit down for a moment.

Don’t forget about yourself! Set aside time for yourself, even if it’s just an hour or two. Remember, taking care of yourself is NOT a luxury - it is an absolute necessity!

Take advantage of outside help. Find a company that provides good in-home care and use them, even if only for a couple of hours once a week. Use that time to go to the grocery store, or go to the park, knowing that your loved one is well taken care of.

Jeanne Slayton is the Case Manager/Community Relations Coordinator for Senior Helpers of the Triad. She is dedicated to helping provide the best care and resources for the seniors in her area. For more information please contact her at  [mailto:jslayton@seniorhelpers.com]jslayton@seniorhelpers.com or visit Senior Helpers on the web at http://www.seniorhelpers.com

Article Source: http://EzineArticles.com/?expert=Jeanne_Slayton http://EzineArticles.com/?Caregiver-Burnout&id=1261442