Posted in Caregiving

C-A-R-E-G-I-V-E-R Part 2

Welcome to Caregiver Friday!!

I’m continuing my 9 part series on attributes and experiences of caregivers based on the letters that spell caregiver.  Last week we discussed the idea that “C is for Courage”.  I hope you found it useful and could accept and wear your courage proudly.  It’s not about being self-sacrificing; it’s about having the consciousness to stand strong in times of adversity.

A is for Ally

Following the diagnosis of a chronic or life-altering illness, it’s common for the patient to feel alone.  They often adopt a “me against the world” mentality as they face new experiences, doctors, and treatments.  You, the caregiver, are the patient’s ally.  As someone who loves or has deep affection for the patient, you’re the natural choice to be the patient’s ally.  No one, aside from the patient, has their best interest at heart than you, the caregiver.

In the patient’s life, as an ally, you hold a place of esteem.  I know it may not seem that way, especially when the patient is giving you a difficult time.  However, the counter-intuitive response to that is they push back at you because they know you won’t leave them.  It’s not about being imprisoned by the patient, but as an ally you have a connection that keeps the two of you on the same team.

As an ally you may be the voice that interfaces with the medical community; especially if the patient is a bit timid, or too ill to voice their own wishes.  Your ally status, along with a Durable Power of Attorney for Healthcare, gives you the right and the license to speak in a manner that protects the patients dignity and their wishes for their treatment.

Often when people hear the word ally they think of global issues where countries take sides and put up a united front.  I know some may equate their illness to warfare, but that’s often a stance out of fear.  It’s better to create a united front by empowering yourself and the patient with information and a good social support network.  The medical community will be attuned to your energy as an ally and will give you the respect and sense of inclusion in the process because at that time everyone is working to improve the life of the patient.

I know that being an ally comes with a lot of responsibility.  I’d like to honor that responsibility by saying “THANK YOU”.  I say it because I hope I’m your ally as you walk the path of the caregiver.  I hope I can provide you with an outlet for your frustrations in a manner that is validating and safe.  I want to be your ally so that no matter the occasion you have the sense that someone’s got your back.  I want to be your ally because it goes with the “pay it forward” concept.  I’ve got your back, you’ve got the patient’s back, etc…..Allies are imperative to surviving the caregiver journey.

If you need any more information or support please don’t be afraid to lean on me when you need back-up. 

I look forward to continuing this 9-part series with you.  Until next Friday…be well!

Posted in Caregiving

The Will To Live

Welcome to Caregiver Friday!!

Today I hope to accomplish two things: offer a tribute to my mother-in-law who died last Wednesday 9-8-10, and provide some thoughts about the long-term impact of caregiving and the domino effect of caregiving.

First my tribute:

We all hope for a parent who will provide love and nurturance throughout our days.  Even though we understand mortality cognitively, understanding it emotionally and spiritually is an entirely different ball of wax.  My mother-in-law was a wonderful wife and mother to three (now grown) children, and seven grandchildren.  She was adored in her community as the prominent director of an early childhood education center, and a kind sister to her three siblings. 

Unfortunately my mother-in-law suffered the long-term effects of caregiving.  My father-in-law had a massive stroke after open heart surgery and for the first ten years she took care of him.  The last ten years he was in a nursing home, but she continued to care for him, bring him what he needed, got frustrated when he wasn’t getting the care he deserved and as a result suffered from the biggest fallout from caregiving…depression.

I’ve met way to many caregivers that don’t recognize the signs of depression and therefore don’t get treated.  Depression is a downward spiral and unfortunately she paid the ultimate price…her health.  Knowing the impact caregiving has on the psyche she tried her hardest not to pin that responsibility on her children and unfortunately that decision led to a rapid decline in her health and ultimately her death.  She shouldered the pain of caregiving for her children for as long as possible.  Her three children were by her bed when she died…a true testament to the bond between mother and child.

It’s as if she held on to the pain of caregiving so her children wouldn’t have to live with that overwhelming burden.  As I mentioned in a previous post, not recognizing the impact of caregiving, much to our regret, can have long-term impact on one’s physical, emotional and spiritual health.  There isn’t enough attention paid on the price of caregiving, not matter one’s age it has an impact.  There needs to be more education, more intervention, and more recognition of what is sure to become one of the greatest epidemics of our century.

She will be greatly missed for her love, caring, and compassionate soul. 

The other thing I wanted to address is the notion of one’s will to live.  This is important for caregivers to understand because no matter how you hard you try, sometimes the person you’re caring for still dies.  My mother-in-law had been admitted to the hospital with pneumonia and a fever.  After a couple of days she seemed to improve, and the once again a few days later the fever returned.  The doctor explained to the family that he didn’t believe she would recover from this infection.

At that point, the family decided to shift from treatment to comfort care.  They moved her to a larger room so her son, my partner, could spend 24/7 with her.  Once she had moved to the bigger room I believe she understood the path in front her.  I believe that without treatment, without any hope of recovery she let go and died in a matter of hours.  She’d held on for so many years that I hope letting go was a choice and a relatively easy decision.  I believe that even in an altered state-of-consciousness she had enough soul awareness to understand the path in front of her.  I’m hoping her conscious decision to let go was one more way she could take care of herself.

As caregivers it’s important to understand that we can only control so much.  We can’t live for the other person or want to fight for life for the other person.  We have to give each person we’re caring for the opportunity to make those final decisions for themselves either by letting go and dying or by making sure they have Durable Powers of Attorney for Healthcare so we’re clear about their wishes and decisions.  I wish you strength and peace on your caregiving journey.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Give It A Lot of Thought

People are living longer today than they did 100 years ago.  In 1900 the average age at death was 47 years old.  Obviously technology and scientific advances have given us many more years of life (if we don’t develop an illness).  So what about this so-called life, how are you spending your time? 

Last night I went to a talk at the synagogue titled, “Making end-of-life decisions”.  When I walked in the majority of the folks in the room were much older than me.  Upon entering one woman told me to go home because I was too young to be at this talk.  Isn’t that an interesting assumption?  She was telling me because I wasn’t “old” I didn’t have anything to worry about for some time.  Who guaranteed me a life expectancy of 90?  There are no guarantees and that’s why the end-of-life discussions have to take place in every one of our homes.

We’ve seen many people die on television and the movies.  Let me tell you as someone who has been at more hospital beds and funerals than I can count; it’s not that glamorous.  What will make you the most comfortable?  Remember, don’t worry about what your family wants because these decisions may affect them on the emotional level, but it impacts you on the physical, emotional, and spiritual levels so your opinion counts.  In fact, only your opinion counts.

There are tools out there that will guide you through the process of making these end-of-life decisions, but it all starts with a conversation.  Both the doctor and the rabbi encouraged us to put our wishes in writing.  In this day and age of technology I would encourage you to get a small video recorder like a Flip video camera and record your wishes.  This eliminates and discussion about is the document authentic and were you of sound body and mind to make these decisions.

Western culture doesn’t talk about death, except when we are telling a story about a tragedy or recounting a story line in a movie.  Death is kept at arm’s length and yet it’s inevitable.  I guess the question I have for you is the one I ponder for myself quite often, “Is it the idea of pain and suffering that stops you from thinking about death, or is it the idea of not being?” 

Irvin Yalom wrote a book called, “Staring At the Sun”.  It discusses the fact that we all have death anxiety.  I told my father about this book and he told me he was the exception, he didn’t have death anxiety.  The next words out of his mouth were, “You know I have fewer years to live than I have already lived”…sounds like death anxiety to me. 

I feel fortunate that I can have these discussions with my family and friends.  In fact, I’m the Durable Power of Attorney for healthcare for both my parents and many of my friends.  They asked me to serve in this capacity because they know we’ve had lengthy discussions about their wishes and more importantly they know I’ll abide by their wishes.  Who do you have that you’re confident could fill that role?

This is the first of many posts that will address end-of-life issues.  I’m approaching the 500 post mark and there are only a handful of posts on end-of-life care…does that tell you something?  Let’s turn the tide and take better care of ourselves in all areas of our lives and that includes making sure we have the best death possible.

Posted in Caregiving

As If You Didn’t Have Enough to Worry About

Welcome to Caregiver Friday!!

Just when you think being a decision maker in the role of caregiver/wellness partner a new study lays an extra burden of responsibility on your shoulders.  The findings are in reference to a study done on patients who had been labeled in a permanent vegetative state.  In many cases the family is asked if they want to continue the person on life support or have other extreme measures performed.  That decision can be easier if you know that the person is truly in a permanent vegetative state.  But what if you’re not sure.

The Wall Street Journal (WSJ) reported on the study that was published in the New England Journal of Medicine.  The study examined 23 patients who had been diagnosed as being in a permanent vegetative state.  Four of the patients showed signs of consciousness…can you believe it 4 of 23.

Using MRI scans the patients were asked questions and their brains were monitored.  Certain responses would light-up certain parts of the brain.  The WSJ article stated “Four of the 23 vegetative patients responded to the commands and exhibited brain activity in the same areas as healthy control subjects”.

When trying to make potentially life and death decisions as a caregiver (hopefully you were mindful to have a Durable Power of Attorney for Healthcare) you are now burdened with the quandary, “Is the person I’m caring for really in a permanent vegetative state or is he/she one like in the studies that can still responds to questions?’ 

I believe the medical ethicists are all gathering to take up this matter on a big-picture discussion.  How would you handle this situation as a caregiver?  If the decision is your, how will you know whether the person you’re caring for has some level of consciousness?  

Dr. Allan H. Ropper said, “the line between consciousness and unconsciousness will be blurred” as scientific understanding of the vegetative state depends.  This is not the most comforting statement for those of you caring for someone who is facing end of life issues or has been in an accident, but for now it’s the reality.

Who do you have that you can discuss these issues with such as a medical ethicist or spiritual director?  Did you have thorough conversations with the person you’re caring for about end-of-life issues?  There are those who even though they may have brain activity, on whatever level, wouldn’t want to live the rest of the days unable to speak, move, or communicate.  Even if the brain might register some activity is this a life?  You know this will wind up in the courts at some point, but for now the onus of responsibility is on you.

I know there is more to come; this is truly the tip of the iceberg.  Please have conversations with your loved ones about end-of-life care.  Decision-making for caregivers is tough enough without the burden of deciding one’s level of consciousness.

Posted in after the diagnosis, Caregiving, coping with chronic illness, coping with life threatening illness, Living with Illness

Reach Out and Touch Someone

Welcome to Caregiver Friday!

Years ago the phone company had a campaign that said “Reach out and touch someone”.  The goal was to get people to connect with one another.  That idea takes on new meaning when we speak about caregiving, in particular, Long Distance Caregiving.  Let’s face it, the phone only goes so far and it’s not like being there.

While at the COPD conference last week I had the chance to speak with a woman who was sitting in the foyer waiting for her mother.  She was from Texas and had planned the trip when her parents told her they were going to the conference during her stay.  She decided to come along and although she popped in and out throughout the day (the family sat at my table), she did stay for the portions of the program specifically relevant to her as a caregiver.

I asked her what it was like living so far since her mother’s diagnosis 2 years ago.  She took a deep sigh and simply said, “It’s okay”.  I felt a sense of resignation in her voice.  She explained that her mother is very independent, even while being on oxygen 24/7.  She is one of four daughters and all the children live far from their parents.  They all take turns coming to visit so there are frequent opportunities for a more objective assessment from one of the siblings.

She has a couple of fears.  She’s afraid something bad will happen to her mother and she won’t be here to help.  She feel a certain amount of guilt for not being closer.  She feels helpless because the distance only allows her to support her mother by phone, e-mail, snail mail and the occassional visit.  She’s raising her own children and is caught in the “sandwich generation” phenomenon.

I know that many of you reading this face the same challenges.  I feel it’s important that these frustrations, worries, and concerns get put out on the table.  What plans are in place as a family if there is an emergency?  Who is the durable power of attorney for healthcare?  Who would be able to get to the family member first?  What support does the father (the primary caretaker) require?  The family meeting is important because it takes the “what if” out of the equation.  When I consult with long distance families by conference call, or in person if there has already been an emergency and everyone has come to the side of the patient, ironing out these issues alleviates a lot of stress.  It releases each person from the “what if” stage which usually keeps your mind running on the proverbial hamster wheel.  Clarity is reassuring, calming and empowering.

Long distance caregiving is difficult.  As technology increases the way we communicate with our loved ones will get better.  As we move to video phones and webcams you’ll begin to see how actually seeing the person alleviates a lot of fears.  You don’t have to rely on their voice when you can see them on your computer in real time.  Services like SKYPE also help keep families together and everyone in the loop.  Use everything and anything that will enhance your feelings of connectedness while also taking care of what you feel are your responsibilities as a long distance caregiver.

I’ll speak more about this over the next couple of months, especially as we move into the holiday season.  How do you handle long distance caregiving?   What have you found to be helpful in keeping connected while far apart?  Is there one thing you want to pass along to other long distance caregivers?