Saturday, December 17, 2011


I have been thinking about this topic a lot lately, as I have so many friends going through different situations right now.  Many of us, for one reason or another, find ourselves in a place we didn't anticipate.  We are now caring for a loved one in a way we weren't quite prepared for.

There are times when you enter a caregiver role intentionally, parenthood being the primary one.  You know that by having a baby, you are voluntarily subjecting yourself to being wholly responsible for the health, safety, feeding, sheltering and caring of another human being.

I don't think most of us go into it with a clear picture of all that entails, though.  We think we are prepared, but in reality we only prepare ourselves to care for healthy, term infants with no unexpected issues.  We aren't thinking we'll have to deal with prematurity, with developmental delays, with life threatening allergies, with injuries, with cancer.

Caring for a child is an expected part of parenthood, but one that can instantly become more demanding and complicated.  There are other situations which you don't anticipate, and they present their own set of challenges.  For most of us, the most likely care giving situation you will find yourself in is caring for a parent.

In my own life, I was the primary caregiver for my dying father once he was placed on home hospice.  I left my children and husband to care for him in another state in his final weeks.  I find myself now caring for my mother as she recovers from major surgery.  I've been down this road more than once, and have caught myself giving advice to others walking a similar path.

Obviously, every situation is different, so there isn't a one size fits all solution for anyone.  Some people will be hospitalized, some in long term care facilities, some at home.  Some will have temporary illnesses, some will have chronic illnesses, some will have terminal illnesses.  Some will be in active treatment, some will be moved onto hospice care.  The only thing they all have in common is that they will need help.

One of the most difficult obstacles to deal with is often the fact that the person doesn't want to ask for help, or has trouble accepting it.  This is common, and can happen for a variety of reasons.  For some, it's just their personality, while others may be in denial of their reality.  Asking for help, acknowledging that you can't do everything alone anymore, is a hard thing for many people to overcome.  If it becomes an area of contention, sometimes enlisting the help of professionals can make a difference.  Social workers, therapists, even doctors can assist in this area.

Which brings me to my primary advice to caregivers: ask for help.  Trying to do everything alone to help another person is exhausting and draining, particularly if they are resistant to the help in any way.   There are resources in your area, use them.  There are support groups for many illnesses, both for the patient and caregiver.  There are respite care groups as well, to allow the caregiver a break away from it all.

Friends and family members can be a great resource, and I've found myself relying on them many times for help with my children, particularly at the times when I need to be in two places at once.  If you can't get your laundry done, if you can't get your bathrooms cleaned, if you are struggling with getting meals prepared, chances are that your friends and family would love the opportunity to help you.  They won't know what you need help with unless you ask.

My mom is currently receiving home health care, and her team includes a registered nurse, a certified nursing assistant, a physical therapist, an occupational therapist and a social worker.  We also will be enlisting the help of senior support services, disabled transportation, Meals on Wheels and the Center for People with Disabilities as we transition her back to her own independent living arrangement.

There is help out there, and it is often covered by insurance or available at reduced costs for those on limited incomes.  You do have to ask for it though.  If you are having difficulty locating services, call your local senior center, hospital or social services office.

If you lose the ability to care for yourself properly, you will be no good to the person you are trying to help.   Eat.  Sleep.  Take breaks.  Let other people help you.

This is obviously easier said than done, and I've run myself into the ground more than once.  The day after my father died, I found myself in the doctor's office on the verge of an asthma attack and with double ear infections.  I'd ignored my own health for too long.

When medications change frequently, I found that keeping a journal helped tremendously with my father.  His dosages changed daily, as did the intervals at which he needed the meds.  Write stuff down.  Do not try to remember it all.  This goes for doctor's appointments as well. If you have questions or concerns, write them down as you think about them, then take the list with you to the appointments.  Discuss the appointment with the patient before going, then afterwards to ensure they understand what went on.

If you aren't clear on something, call the office.  The nurses and doctors will gladly repeat the information.  With a complicated diagnosis or treatment plan, there is often too much information to absorb at once.  Ask for printouts of test reports and blood work, for your reference as well as other health care workers who may need that information.

One lesson I learned as a doula is that decisions rarely need to be made right now.  There is almost always time to ask more questions, to seek another opinion, to ask about treatment options.  If there isn't time, chances are there aren't really any options anyway.

In fact, I think that my training as a doula did more to prepare me for care giving than anything else.  Ultimately, both responsibilities are about helping someone down an uncertain and scary path, holding their hand and reassuring them.  It's helping, plain and simple.

If you are in charge of their medications, I highly recommend that you run all prescriptions through one pharmacy.  This is for several reasons.  The patient may be getting medications from several doctors, and there may be drug interactions.   Each pharmacy will run an interaction check, but if you have prescriptions at different pharmacies, they won't pick everything up.  It also helps simplify things for your own sanity.

You need to have the hard conversations.  You need to know the wishes of the patient, you need to know what the parameters are for their care.  You need to know how much intervention they will want, if any, when the time comes.  If there is paperwork that must be filled out for legal purposes, help them get it done.  You do not want to find yourself in a situation where someone calls 911 for a patient who wishes not to be resuscitated, trust me on this one.

The other family members and friends who are a presence in the life of the patient should be updated and informed of the situation, particularly including end of life decisions and any changes to plans made before.  We set up a Caring Bridge website for my father, which is something I highly recommend to those out there facing illnesses.  It helped us disseminate information without needing to call everyone all the time.  It also cut down tremendously on the number of repetitive phone calls from those who wanted updates.  You will tire of repeating the same details, this website and others like it are great for helping avoid that as much as possible.

Engage the patient as much as possible, and as much as they desire, at the times when they are alert and able. Certain illnesses and medications create extreme fatigue, but there are ways to schedule medications to allow for periods of alertness.  Talk to the patient about figuring out what works best for their desires.  Try and schedule visits from others at those times.

Honor the wishes of the patient.  If they want to talk, talk.  If they want to be left alone, let them.  If they express a desire to see family or friends, try to make that possible, with the understanding that visits should be limited according to the wishes of the patient.  People can quickly overstay their welcome with an ailing patient.

If the patient is terminal, whether in a hospital or on home hospice, understand that the dying process isn't always a linear one.  Most patients experience a surge of energy before their final decline, and many well-meaning family members have misinterpreted this, thinking it was some miraculous recovery.  It's not, and it is normal.

Also realize that at some point, the dying patient will have to finish this journey alone.  Their spouse, their children, their other family and friends cannot complete the trip with them.  It is very common for a person to turn inward in the last days or weeks.

It is common for the dying patient to wait for permission from those close to them to let go.  It is also common for the patient to worry about tying up loose ends and seeing long lost family members.  Again, these can be interpreted as the patient recovering, but often are just a normal part of the dying process.

Once the patient comes to a place of acceptance, they generally will find peace as well.  In my father's case, I found it fascinating that he was often the one reassuring everyone else that things were going to be okay.

Sit.  Listen.  Absorb what they are saying, there are many profound conversations to be heard in those final weeks.

The best advice I ever received when my father was sick was to trust my instincts.  If my heart told me I had to go, I should go.  If I needed to stay, I should.  Somehow I just knew that it wouldn't be long once he was put on hospice.  Though it seemed like everyone else around him thought he'd have far longer, I just had a feeling.  And I was right.  I'm glad I trusted that.

The other key piece of advice is to let go of the idea of planning to some degree, which is especially hard for type-A people like myself.  I had to learn to live only in today, forget about yesterday, and not worry too much about tomorrow until it got here.  This is not to say that you shouldn't make plans, but you need to learn to become flexible in a way that you never have before.   Do what you need to do to get through today, deal with tomorrow only after you've survived today.

I'm sure that I am leaving out so much that I should be writing, please feel free to comment with other suggestions or tips that you would like to pass on from your experiences.  Even writing about this subject is daunting and overwhelming...being in it is so far beyond that.

For those of you in this place where I am, I wish you peace.  I wish you hope.  I wish you relief and breaks.  For those of you who've been there before, you will know exactly what I mean.  For those of you who've not yet been there, chances are that your time will come.  Trust me when I say that there are many more people who've been there before.  Lean on them, ask them for help, use the resources available.  And breathe.

Just breathe.

1 comment:

  1. Beautifully written! I watched my parents care for my mom's mom for five years after she had several severe strokes that left her bedridden and unable to communicate except sometimes by blinking. It was a long journey for everyone, but thankfully we had the means to give her good nursing care so the majority of the care didn't fall on my mom and her brother's shoulders. It's so true that people around you are eager to help if you only tell them how! I'll be praying for your mom that she has an easy recovery.


Some of My Most Popular Posts