Brown Bag Tips and Strategies

 

In keeping with the sandwich theme, here are what I call the Brown Bag of a few tips

and strategies to assist you as you navigate the caregiving journey.   Click on each tip to 

read more.

 
To read Jane's past blog posts, click here.
 

1.

It's kind of like climbing Kilimanjaro.  

Certainly, many of us take on this role out of love, dedication, or a sense of responsibility.  But often it is not something we have planned.  It can happen suddenly due to accident or illness.  It can occur at birth or later on in life.  Every caregiving situation is different and the situation can change in mere seconds. Thus, it can be challenging to be totally prepared. 

 

 A childhood friend decided to climb Mt. Kilimanjaro in Africa for a significant birthday.  A year ahead he began reading all he could find on climbing the mountain. He watched videos, talked with others, began strength training, and consulted his doctor to make sure he was physically capable of taking on such an adventure.  He felt well prepared but once he found himself on that mountain, he realized he could not have fully prepared.  There was simply no way of knowing exactly what it would be like until he was there - on the mountain.  He also recognized that this would be the physical and mental challenge of his life. 

 

I felt the same way as my personal caregiving challenge began.  I knew about caregiving, but once I found myself in that role, I was not fully prepared.  The myriad of tasks, changes, and obstacles  were challenging enough. However, the intensity and depth of emotions that I experienced were much greater than I had anticipated. In fact, I learned that the emotions we experience as caregivers may be our greatest challenge.

The climb is tough.  It is important to learn all you can -  about the illness or condition of the person for whom you care , about available resources (even ones you do not think you need at this moment), what decisions need to be made now and which ones can be made later.  Knowledge is power. The more you know, the less likely you will have to make uninformed decisions in a crisis.  And, like my friend who had a guide, having someone who understands can help. I hope I can fill that role for you with this website. 

 

2.

Make only one promise.
An old Japanese proverb says "Eggs and vows are easily broken".  How often do we promise something with good intent but discover later it is impossible to keep that promise? 
 
Many times, families make promises without understanding the full ramifications of that promise or how circumstances may change in the future.  I have then seen families agonize, punish themselves, and experience extraordinary guilt over a vow or promise they made.  However, disease symptoms can worsen, the way an illness manifests itself can change over time, finances can change, you, you could develop a health condition that you did not anticipate,  you could be in an accident.  Thus, you find yourself unable to stick to the original plan or promise.   The one thing that is constant in life is that things do not stay the same.  
The American writer and philosopher, Elbert Hubbard said, "It does not take much strength to do things, but it requires a great deal of strength to decide what to do." The strength is takes for caregivers to make "the right decision" is enormous. Who knows what may be right at any given time, in any given situation?   You can gather information, consider all the ramifications, listen to what others may be saying, certainly ask the person for whom you care if they are able to give you an opinion, consider your heart and what your instincts are telling you, and then you make a decision.  That is all you can do.  
 
So, my advice is, the only promise you should ever make is that you will try your best  If you have made a promise that you now find you cannot keep, focus on the fact that you did not have a crystal ball. Stuff happens.  You are simply doing your best with the circumstances in which you now find yourself. Yes, some days will be better than others, some days you will be better than others.  You may find that a decision you made is not working.  That happens.  Hind sight is 20/20.  But don't beat yourself up thinking you made a "wrong" decision.  There  very well may be no true wrong or right.   Think of it like eating in  a restaurant.  You chose an entree and it isn't what you expected.  Maybe it isn't cooked to your liking or the spices are too strong.  You didn't make a "wrong" decision. But next time, you will choose a different entree'.  
 
I  firmly believe that no caregiver wakes up and says, "Today, I will try to be the very worst caregiver I can possibly be."   You are doing your best and that is enough.
 
Get the paperwork but don't keep it in the car.

Before her condition diminished her ability to care for herself, I knew my mother had created a living will.   One day when visiting with her, we were chatting about such things and it occurred to me to ask where she kept that document.  I assumed she would tell me it was in the file cabinet in the room she used as an office of sorts.  I was quite surprised when she told me she kept it in the glove compartment of her car!  When I inquired about keeping it in the car, she said she thought, should she ever be in a car accident, it would be handy.  I did not scold her or criticize her logic, but I did suggest we make copies and place a copy in that file cabinet and maybe I should keep a copy as well.  As time went on, we added documents: a Durable Power of Attorney as well as a Medical Power of Attorney and we updated her will.  I kept copies of all those documents and her copies went in a safe place, but NOT in the car.

 

No one enjoys talking about end of life plans.  Parents may not want to talk about their finances with their children.    It is unpleasant to think there may be a time when we are not able to make our own decisions.  But these conversations are important and securing the appropriate documents and  advanced directives can save much heart ache when a crisis occurs.   I hear all too often from families, that Mom did not name a power of attorney and now she has advanced dementia.  No one added their name on to Dad's accounts and didn't realize he had given large sums of money to an unsavory neighbor who befriended him.  Now he is facing a financial crisis.   One family I spoke with did not know that Dad had prepaid for his funeral.  Dad did not inform them, and they had never asked about such things.   Upon his sudden death, they chose a funeral home (not the one Dad had contracted with) and paid for a funeral unnecessarily.  I am sure you have heard stories of families who  argue and agonize at the end because no one asked Grandma what she wanted.

Have the conversations, even if it feels uncomfortable. Inquire about financial documents, and things such as a will, insurance policies, any prepaid plans, and where those documents are kept.   Ask about  documents like a power of attorney, both durable and medical,  as well as a living will and have those drawn up if they do not currently exist. Seek out an elder law attorney to assist you if need be.  Some documents, such as a living will do not need an attorney. Powers of attorney, however, should be drawn up by an attorney  If theses documents do exist make sure to have copies and keep them in a logical and safe, yet easy to access location.  This might be a safety deposit box at the bank, a lock box at home, a file cabinet.   Do this for your aging parents, for the person for whom you are or may be providing care someday.  Secure these documents for yourself as well.   Don't wait.  However, I would suggest you don't keep them in your car. 

3.

 
Bother someone.

 

I was out to dinner with my husband. Sitting at an adjacent table, I saw an acquaintance I knew through my work.  We saw each other several times a year at conferences or meetings. We had worked together on a few projects.  She was aware of my work with caregivers.   I could tell she seemed stressed and as I ate my salad, I couldn't help overhearing the conversation she was having with her husband.  She was relaying the challenges she experienced that day with her father.  Apparently, he was no longer doing well living alone.  She expressed frustration with his attitude, lamented the fact that he lived two hours away, and frequently said, " I don't know what to do, I just don't know.

Eventually, she caught my eye.  She smiled and said "  Hi Jane. Could you hear me venting over here?"  

I smiled back and said " Well, yes. I could.  I am so sorry you are feeling so frustrated.  I would happy to talk with you more about your situation.  Please just reach out. You have my contact information, don't you?

She sheepishly answered, "I thought about calling you, but I didn't want to bother you."

You can not do this alone.  It is too great a task, and no one should navigate this journey without some help. Whether it is to unleash your pent up emotions or to ask questions because you have no idea what to do next, what resources are available, or how to access them, BOTHER SOMEONE!

Referring back to my sandwich theme, you don't want to be a hot dog - trying to do it all alone without any help or advice.  You also don't want to end up a panini - squashed under the weight of your burden.  I realize some may not have friends or family members to physically assist you with the tasks, but there may be other sorts of help available. 

You might start with contacting the local Agency on Aging. Call the disease related organization such as the Alzheimer's Association, the Parkinson's Foundation, Cancer Society, Autism Speaks.   There are many good websites  with information on all aspects of caregiving.  I recommend both AARP at www.aarp.org/caregiving and the Family Caregiving Alliance at www.caregiver.org.   

 

Maybe all you need is a listening ear.  I think that was what my friend needed that evening. She is quite smart, and I feltsure she would figure out how to get the tasks done.  But what she needed was a sounding board - someone to listen to her fears and doubts and frustrations.  She needed someone to say "I know" and to tell her she was doing the right things and was going to get through this.   

 

Approach your pastor who is trained to listen or someone you know in your church or neighborhood who has been a caregiver.  Find a caregiver support group.  Such a group can be helpful not only emotionally, but often the participants have dealt with some  of the same  issues with which you are struggling and can offer advice..  What you may find in such a group, is that your situation is not unique. Others have traveled that same road, have sat on the same sandwich counter stool.  Just knowing that can make you feel a lot better.

It is also ok to seek out a counselor or therapist to find that listening ear and regain some balance.  My friend,  climbing Kilimanjaro, valued the encouragement he received from the guides he employed, on that trek up the mountain.  A couple of times, they even  carried his pack, to ease his effort.   Do you get it now?

Bother someone.  

4.

 

5.

It might get messy.

Being a caregiver exposes you to all kinds of "messy" - both figuratively and literally.

 

 Individuals of all ages and numerous conditions may lose control of their bowels.  Urinary tract infections are common in older adults. particularly women.  Those with a dementia may develop them even more frequently.  You may discover your dad is constipated or your wife has become incontinent.   Your grandfather stubbornly refuses to wear those "diaper things".  Dental hygiene can become a fight. Teeth need to be cleaned but jaws can clench, and tempers can flare.   These are common challenges caregivers face.  You can find information on websites, consult a doctor or nurse, ask those folks in the support group you decide to attend. You may find a solution or strategy that will work for you.  Often, there is no perfect solution or strategy.  It's part of the challenge.  Constipation and UTI's were my constant enemy as a caregiver.  Sometimes it seemed that the issues of pee and poop ruled my world.  Then there are the other kinds of messy.

Families and family dynamics can be messy. Siblings don't always agree on what's best for Mom or Dad.  Your brother might resent that you have suggested long term care, because he promised Mom that would never happen. The sister-in-law might jump in with  an opinion too.  Your father insists he knows whats best for your Mom even though you can see the stress of caring for her is harming his health.  There are a myriad of disagreements, situations, and dynamics. So yes, it might get messy.  

First, remember  what I said about getting the proper paperwork and having tough

conversations?  If those have happened, it might be less messy.  If you haven't and can do it now, do it now.  

 

Next, recall I  said you are doing your best. Keep that in top of mind.  And if you are the primary caregiver, in my  opinion, that gives you some authority.  If you are doing the majority of the work,  then your opinion should bear more weight.  But, sometimes, others may have an idea, or even a piece of an idea that could be helpful. So at least take the time to actually listen to what the person is saying without commenting back for the moment.  Just listen and try to "hear" the intent behind the suggestions or comments.  You can then use the technique of repeating back to them what you just heard.  Literally use those words, "What I heard you say was......"   Clear communication can often lessen the messiness.    Maybe you will discover that your Dad is worried about giving up control.  Maybe your sister-in-law sees how tired you are and truly does want to help you.   It is often enough for someone to know you actually listened, even if you choose not to go with the suggestion or plan they are sharing with you.  It may lessen some of the tension.  And sometimes, there is some piece of what they suggest that could be useful.

It's also important to remember (and forgive me if this sounds sexist) that men and women think differently.  Yes, that phrase " Men are from Mars, Women are from Venus" is true.   I met with a brother and sister duo.  Soon after sitting down with me, the brother pulled out his notepad and said " OK, let's figure this out."  

When I turned to the sister, her first words were " I just feel like..."  And there, my friends, is often the crux of the matter.  Some of us need to talk about our feelings, address our feelings and explore our feelings before we can get down to basics or make a plan. Others, often men, don't want to think about, let alone talk about feelings.  It may be helpful when having family discussions if you simply keep this in mind.  I urge you to try to listen to the feelings behind the words, and also to be patient if you are that person who doesn't want to feel or talk about  or hear about anyone's feelings.  Remember, Mars and Venus, and try to work your way to some planet in the middle!

 

it may be wise to bring in someone who is perceived as a neutral third party.  I fill this role when I participate in what I call Care Consultations.  I sit  down with all parties. First, we agree on a goal.  That is usually the easy part as  most often it is simply to do  what is best for the person who needs care.  Then I ask each person to share their greatest concern as we work to achieve the goal.  Then I may ask what each person is willing to invest, or do to help achieve that goal.  And then we go over all the information,  I offer some of my own insight  and work with them to develop a plan.   Everyone may not love the plan, but everyone usually feels heard. Everyone has had input, sharing ideas and opinions.   They leave the meeting with a written plan.  The family may stray from the plan, but it is a place to start.   You might request  this with the social worker at the hospital or someone at the Area Agency on Aging, or again, a minister or trusted friend.  You may be able to find a Geriatric Care Manager who could act as a facilitator.  It's rare, but in some areas there are individuals called Caregiver Coaches. Look around and see who in your life might fill this role to help manage the conversation.  

 

You may have that person I call "The Seagull".  This could be your brother out in Idaho, or the aunt who lives in another town.    When they come to visit  or call you on the phone, they have an opinion and give it freely.  "I read an article that said...",  or "I  saw on the internet...", or " This lady in my church....", or the very worst ..." If it was my mother...".    In other words, they fly in from somewhere else, flap their wings, squawk a lot,  and crap all over the place, and  then they fly away again.   As I said, you may want to listen with half an ear, just in case something they say could be useful.  But often it is just noise.  It was actually helpful to me to picture the seagull in life as just that.  It made it easier to endure the suggestions, the criticisms and the comments.  It reminded me that he would fly away again and leave us alone.  

Sometimes there are the family members who are simply not involved. They refuse to help. They always have an excuse why they cannot take on any tasks.  I have no easy answers.  I know it hurts and I know it is not fair.  However, to err on the side of caution, be sure to be very clear.  Make sure you are not giving the impression that "You got this" and don't really need their help.  Make sure you really do ask, and then ask again.  The answer may still be no.  That really stinks.  I read a quote once that said " Some people are just sh*ts.  It is no one's fault but the sh*ts.  You can't change the sh*ts".   No, you may not be able to change that person, their attitude, or lack of assistance.   And for that, I am so sorry.  

 

Seek help elsewhere.  There may be a local respite program. Some areas have excellent adult  day programs. Maybe you can ask friends to fill in for you from time to time.  When I had to go out of town, one of my good friends agreed to stop in to check on my mom.  Are there individuals in your church or neighborhood who say "Let me know if I can help." ? Let them know!  One caregiver took this to a terrific next level.  She created little cards and on each card she wrote a task.   The tasks included: come and mow my yard; rake my leaves; take my husband for a walk;  bring us lunch.  She kept them in her purse. When someone did say , How can I help?" or "Let me know if you need anything, " she pulled out a card!  I think she is brilliant and brave.  As caregivers, we often need to be brave. 

 

If finances allow, hire some help even if it is only for a few hours.  In truth, some caregivers feel guilty about hiring outside help. They feel they should do it all themselves.  Not true.  Your role as caregiver is seeing that the person gets care, it does NOT mean you have to give all of it.    Your loved one may balk at the idea of someone from outside coming in.  That can be messy too.   A couple of years before she broke her hip, my mother had fallen in the bathtub a few times.  I installed grab bars.    On one of my twice monthly visits to help pay her bills, I discovered her refrigerator was nearly empty.   We hopped in the car and went grocery shopping, buying lots of easily prepared items.   But I was becoming  more and more concerned.

 

 I lived an hour away and my sister, four hours.   We both offered to have Mother come stay with us. But as is so often the case, she did not want to leave her home or her friends.  So we decided the time had come to hire someone to come in a few hours a day.   Mother, of course, insisted she did not need the help.  My sister and I used the benevolent tactic on her.  We said,  "We will feel so much better, Mom.  We will worry less. Please do this for us."  She reluctantly agreed.  The person did light housekeeping, took my mother out to run errands and to church,  and did some cooking.  In the beginning Mother refused to let her help with bathing, but did agree to only bathe when the person was there in the house.  That way someone was at least there, should she fall.  The first person we hired was not a good fit.  Their personalities just didn't mesh and then she made an innocent remark that insulted my mother and that was it for her!  The agency we used was very understanding.  The next person was a jewel.  However, Mother still reminded us often, "I don't need her.  You can stop having her come now."  It took 18 months of this back and forth and then, suddenly, Mother began saying, "She's wonderful!  I don't know what I would do without her."   Whew!  

Having outside help may have other advantages as well.   My mother and I were a bit like oil and water.  She did not always take my direction well!  She could be quite stubborn and I was determined to see to her well-being whether she liked it or not!  (I was my mother's daughter, you see.)  Occasionally, when she felt I was being too bossy,  she would look at me and say, "I raised you, you know!"  She was often much more agreeable and compliant with the helpers I hired (we called them "her girls") than she would be with me.  

 

 If family members are not helpful, I urge you not to let the anger and resentment eat at you and make you less effective as a caregiver.   Don't let it diminish the hero that you are. You are doing one of the toughest jobs ever.  I salute you.  And as the song goes, you may just have to " Let it go"...because... remember... and I will remind you often, you are doing your best.

 

6.

Honey, who is taking care of you?

If you have been a caregiver for more than five minutes, you have heard the analogy of the oxygen on the airplane.  Should the cabin lose pressure, you are to put on the oxygen mask first before you help the child or other person who may be with you.   I had not only heard it, I had said it a thousand times. And then I became a caregiver.

The autumn that my mother fell and broke her hip and five days out of the hospital fell and broke it again, I cancelled my regular annual appointment with my primary care physician, a dental appointment, an eye appointment and then my annual "female" appointment. There was no time for those.  I was dealing with my mother's recovery, the task of bringing her to live near me, which assisted living would be best, whether to sell her house now or later, what to do with her car, her anger and frustration at the situation, her stubbornness in cooperating with her rehab, and then there were those other details such as my full time job, and my husband, and the other facets of my life.  So, I understand the eye rolls when you hear the airplane oxygen story - doesn't mean it isn't good advice, but I do understand the eye rolls.  

I will not quote the vast array of statistics, but they exist.  Trust me.  Caregivers experience extreme stress and often their health suffers.   It does not matter if you are providing all the hands on care, or if you are overseeing the care, it is stressful.  You want to be able to do those tasks and provide or oversee the care, for as long as that person needs you.  If you do not care for yourself, you will not be available to do so.  

When I spent time in the United Kingdom, I trainied with a brilliant woman there who did care consulting with Alzheimer's families.  She required the caregivers with whom she worked to sign a contract.  Of course that contract listed all the services she, as a care consultant would provide, the fees, etc. What was unusual was the contract also included a section for the family caregiver. In that section, the person had to agree to either keep or add something just for themselves for the duration of time that my friend worked with them.   So, if the person sang in the church choir, he would put in the contract that he would continue to sing in the choir.  If the person took a weekly yoga class that person had to contract to continue the class.  And if the caregiver currently did not have something that she did just for herself, she was to contract to begin some activity just for her.   Clearly, my friend, who had years of experience, felt this was important. 

I know you are going to be busy and I know you are going to be tired.  You can no longer do things exactly as you did before you took on the role of caregiver.  But  please, do someting just for you to relieve that stress.  If you cannot read a novel, read a chapter.  If you cannot read a chapter, read a few pages. If you cannot go on a long hike, walk around the block. Even a brief respite can bring some balance to your life. Can you look at the sky, marvel at the clouds?   Put on your favorite music and do a little dance.  Yes, it may seem silly and insignificant, but it is not.  A few minutes of silly can be good for your soul! If you can manage to keep a hobby or outlet do so.  YOUR well-being depends on it.     

 

I am a horse lover.  The barn has always been my place of escape.   Once my mother was settled into an assisted living ten minutes from my home, my daily rountine included a phone call to her each morning.  Then I would stop by to see her after I left the office in the late afternoon.  This usually coincided with her dinner, so I was able to at least see that she was eating. Sometimes it took a bit of cajoling and coersion!   If need be, I would speak to the staff about any problems or changes in her condition.    I would check to see if she needed any supplies.  Her cookie stash always became depleted pretty quickly.    Then I would rush home to change my clothes, wave to my husband, then I was off to the barn.  Many evenings I was exhausted when I arrived.  Often,  I was upset - maybe about some work issue, or some issue with my mother, or maybe both!  Many evenings, I  did not ride my horse at all.   Some evenings I would clean his stall, shoveling horse poop and  while fuming and fussing about my frustrations of that day.   He always listened and the physical exertion helped ease my stress. Or sometimes, I would simply brush him and talk to him.  Some nights, I was too tired to do even that, so I would just sit with him and talk. The sounds and smells of the barn, his kind eyes and his calm breathing, just being with him and sharing my thoughts and feelings with him, soothed my soul.  I stopped many activities during my time caring for my mother. But I kept going to the barn.  It also helped with my relationship with my husband. Sharing that time with my horse, being able to alleviate some tension and stress by spending a half hour or so at the barn, allowed me to be less stressed and a better wife, when I finally did get home.  Luckily for me, he is a good cook! Otherwise, we may have lived on cold cereal and take-out pizza for dinner!  And you know what? That would have been ok too!

As a caregiver, you and the person for whom you care are now a duo. For better or for worse, you are now two halves of a whole.  And if one half is not doing well, the other half does not do well either.  As I have said before, we cannot change the course of a disease. or how a medical condition might change, all we can change is how we respond, how we react to those changes.  

 

 Another analogy I love is that of the umbrella. When you hold the umbrella over the person for whom you care, you are not stopping  the rain.  You are, however, providing them comfort and care and are keeping them dry.  But if you can no longer hold that umbrella because you have not taken some care of yourself, then what will happen? Who will hold that umbrella?  It is not being selfish to do some self-care.  It is not being selfish to put yourself first sometimes.  

Here is the last thought I want to leave with you about taking care of you. What would the person for whom you care want for you?  Would  your mom or dad or spouse or child, want you to ignore your own health , your own well-being?  I doubt it.   My mother's dementia did not advance to the level of her not knowing her family. She might forget I had been there the day before, but she always knew me. She forget some happenings in the recent past.  Occasionally, she would inquire about people or events.   Overtime, these inquiries became fewer and fewer.  However, just a few weeks before she passed away, I walked in to her room. She looked me square in the eye, used my first and middle name, so I knew how serious this was and  said, "I need to ask you some questions!"

I said of course, sat down, and gave her my full attention.  She said, "I can't remember why I am in this place and cannot go back to my house. Why am I here?  What has happened to me?"

I took a deep breath and began.  "Well, Mom, in 2010 you fell and broke your hip.  A few years before that you were diagnosed with Parkinson's disease."  I then listed the events of the last several years.  I told her about the second hip break, the selling of her house, how we took her there and went through all her things. How she helped us make decisions. I relayed which family members had which items.  " Sarah has the pink chairs.  Elizabeth has your dining room furniture, I have the....".  I explained that she lived in the assisted living for six years.  I mentioned some of the friends she had there, and she smiled, and I saw recognition in her eyes. Then I explained that her condition had changed and she needed more specialized care, so a few months before we came here, to this skilled nursing facility. 

She commented periodically as I chronicled the past seven years. Once she said, " Well, for heaven's sake!"  Several times she laughed or shook her head in disbelief.    Then she looked at me and asked,

"And you have been taking care of all of this, and taking care of me?"

I answered, " Yes, Mom.'

Then from her wheelchair she leaned toward me,  patted my knee, and asked, " Well, Honey, then who is taking care of you?"

So, now I am asking, "Honey, who is taking care of you?"   

 

7.

The biggest burden may not be what you think. 
 
Both my friend on Kilimanjaro and then me, in our respective challenges realized the emotional challenge was greater than we had anticipated.   Most of the time, tasks can be managed.  Lists can be made and checked off.  Arrangements can be completed.  Help can be hired.  But what do we do with all the emotions? Do we take time to feel them and acknowledge them? Or do we brush them aside or stuff them deep down inside. 
Several years ago I read a book in which they talked about caregiving as being the new normal.  The book also referred to the "Caregiving Crucible".   Merriam Webster defines crucible as "a place or occasion of severe test or trial”.   What makes it such a trial?  I suggest it is the emotional burden as much or more than the physical burden.  

 

Emotions was a constant topic when I facilitated a caregiver support group.  Remember, the brother and sister  with whom I consulted? The sister was struggling with her feelings.  The brother was ignoring his.  I  am fairly new to Twitter.  In the short time I have been tweeting, I have connected with two young women, both of whom have mothers with Alzheimer's.  One of the women's mother resides in an assisted living. The other has her mother living in her home with her.    Both young women are articulate.  Both comment about caregiving almost daily.  Both seem to be struggling with the emotions of being a caregiver, more so than they struggle with the tasks and other challenges.  They both indicate appreciation when I make a comment  or offer understanding of the emotions with which  they struggle.  

When a person is in an accident, or when a serious diagnosis occurs,  that person may not only be experience a physical trauma but also an emotional one.  Yet, we as the caregiver for that person also experience the trauma.  A trauma is defined as a deeply distressing or disturbing experience.   Any situation that leaves you feeling overwhelmed can be traumatic, even if it doesn’t involve physical harm.   As the caregiver, we move quickly to soothe the emotions of that person for whom we now must care. We begin the list of tasks to be done. We focus on the doing.  But we don't take the time focus on our own feelings. 
You will be frustrated and confused -  by  the terminology the doctors use, by the  health care system, by  the lack of resources, by  trying to figure out the right decision to make.  
You may  be struggling with grief.  Grief does not  just happen at the end. For many caregivers  grief walks with us all along the journey.  You may be grieving the loss of the plans you made.  You may be grieving the loss of your freedom.  You may be grieving the loss of the person you once knew, as the illness or condition changes that person.

I felt grief when I had to take over her checkbook.  The woman who had been a whiz at bookkeeping, balanced her checkbook to the last penny, and shamed me for not doing so, now put the stamps on  the envelopes after I wrote the checks for her bills.

I felt grief when the woman who was known for her fashion sense put on earrings that didn’t match her outfit.

I felt grief when she longed for her house and asked me to  please take her back there.

I felt grief when the tall woman with the rim rod straight posture became stooped and twisted.

I felt grief that last Sunday when I looked in to her clear blue eyes and said, “Mama, you are pretty sick and we are not going to be able to make you better.”

And I still feel grief today.

 
Then there is the anger.  Why did this happen to him? Why did this happen to us?  Why won't my family members help?   Why can't the doctors do more?   Anger can become all consuming. I knew a caregiver once who stopped interacting with friends and ignored their offers of help. She was  so consumed with her anger that this was happening to her and not them as well, that she cut them off.  We have already mentioned you may be  angry at family members who are not supportive or do not provide any help.   And often, you are angry with that person for whom you care. 
No matter how hard I tried to be understanding, I was often angry at my mother.  The day before she fell and broke her hip, I was with her.  She was ready to begin switching out her summer clothes for fall.  I  reminded her that her fall sweaters were no longer in a box under her bed.  I walked with her to the guest room closet and showed her again that we had moved them there, so she could reach them more easily.  But the next day, after I had returned home, she looked one more time, just to make sure no sweaters were under that bed. And she fell.    She was NOT wearing her "I have fallen and cannot get up emergency button."  It was laying on her dresser, as she thought it was too tacky to wear.  So she lay there, in pain, for hours, until a neighbor stopped by.  I would  be angry at her many more times over the next seven years.   But  I worked hard not to become consumed by that anger.   I was a continual work in progress, but often, I could put that anger down and remember the good times, relish the good days that still occurred, and be thankful that I was able to see to my mother's care as disease and age took its toll. 
 And then there is guilt.   Why didn't we notice symptoms sooner?  What if I had taken him to the doctor earlier?  Did I do all I could to keep her at home?  We feel guilty that we aren't making the right decisions, we feel guilty if we  made a "wrong" decision ( although, I said there are no wrong decisions.)   We feel guilty because we are angry at that person for whom we care. We feel guilty  because  some days we hate being a caregiver.  Author Maureen Johnson has said " Guilt is a weight that will crush you whether you deserve it or not."  Amen, sister.   Guilt is the big one that can bring us to our knees.  
Guilt could be my middle name. I am one of those people who feel guilty about everything.  But as I watched so many caregivers struggle with guilt and I urged them to let go of that guilt, I tried to dig deeper, think a little harder about why we struggle so much with guilt.  Here is my theory.
I believe that underneath the feelings of grief, anger, frustration, confusion, and the all the other feelings we may feel as caregivers, we feel sad.   We feel so incredibly sad.  it is sad to watch  loved ones struggle.  It is sad to watch them lose ability.   It is sad to watch their pain.  From there we usually move on to hopelessness. We want to make things better.  We want to change the situation and we can't.   So we begin to feel hopeless.   No one wants to feel incredible sadness and hopelessness.  We get busy,  keep trying, and performing tasks as we try to avoid those feelings.  I  believe, in our subconscious we look for ways to move away from that sadness and hopelessness.  Enter guilt.
 With sadness and hopelessness, we feel there is nothing we can do.  Ah, but guilt, as I have come to understand it,  is actually  an action word.  Instead of sitting with the feelings of hopelessness and sadness, our mind gets busy. What if I had...?  Should I have...?  If I had done this better then...  If only I could..." And we are off - on the marathon of guilt.  It's almost like an addiction.  It is what we have the tendency to go back to when things get too much.  Our emotional self is tempted to run away from sitting with the extreme sadness, or the feeling of helplessness. We feel we may drown in it.  Our frustration may seem like a wall - that we cannot move beyond. Ah, but the guilt, we can MOVE with guilt. Yet,  guilt  can flatten our  confidence,  kill our motivation,  and weigh us down more than any other emotion.​
So, how do we deal with all these emotions?  First, we recognize we have them.  That's half the battle.  We sit with them and we feel them.  Grief specialists tell us if we don't feel our grief, recognize and acknowledge it, we will never truly move beyond it.  We will stay stuck in our grief.  I believe it is the same with all the feelings we tell ourselves we are too busy to feel.  If we ignore them we think they will go away and not hurt us.  But being a caregiver means emotionally hurting often. 
I have a friend who has a sorrow chair.  It is an actual chair in her home, that she will go to from time to time.  She will sit there and deeply feel whatever is eating at her - sorrow, grief, sadness, guilt.  She may cry in that chair. She may journal about her feelings in that chair.   But she gives herself a time limit. She does not sit there for hours and hours, but for 30 minutes.  That's it.  Then she moves up out of the chair and on about her tasks.  I have tried this method, although my spot changes from time to time, and I have found it to be truly  helpful for me.  I may sit and cry.  I may pound on the arms of the chair.  I often write my thoughts and feelings down.   I find I can them move forward with a clearer mind and less emotional weight after I have had what I call my "feeling session."  
This can also be what you share with a therapist, or counselor, or even a minister.  Just as I advised above,  please do bother someone when your emotions become too heavy.  There is no need to bear them alone.  
I also believe words have power.  While I wish I could use my  magic wand to provide easy answers to all of the care giving challenges, what I can offer is wisdom from experience, and some words.  The following are some words, quotes really, that I have found helpful.  They may be helpful to you as well.  

Guilt is a useless thing.  It’s never enough to make you change direction, only enough to make you useless.        Daniel Nayeri, Author

 

Worry does not empty tomorrow of its sorrow, it empties today of its strength.                                                  Corrie Ten Boom, Author, Nazi Prison Camp Survivor

 

You can do anything…but not everything.

David Allen,  Productivity Consultant

 

Caregivers are not superheroes. Superheroes don’t get weary beyond their breaking point. Superheroes don’t hurt, cry, shake and struggle to hold it all together. Superheroes don’t cry themselves to sleep at night with a mixture of worry and exhaustion.

Jeff Davidson, author

 

"Sacrifice – it’s difficult to handle any level of sacrifice if you don’t receive acknowledgement of what you are doing, compassion for your plight  and endorsements of your reason for doing what you are doing.

The platonic ideal that a family caregiver should be patient, generous, and strong. Sometimes we get this from images we see of others…like Nancy Reagan caring for the President…or from  past actions of others - “ my mother took care of her mother without ever complaining, so now I must do the same.”

Or religious convictions, “God has placed this challenge before me to test me or teach me.”

Barry Jacobs in The Emotional Survival Guide for Caregivers.

I actually disagree  just a little with Jeff.  No, caregivers are not superheroes, but you are heroes. You are doing heroic things every single day.   You are not perfect.  You don't do everything perfectly every day.  But you you are making tremendous sacrifices and you are doing the very best you can.    So I acknowledge you.  I salute you.  I appreciate you.  And you are not alone.

Jane

 

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