My Caregiver

My sister-in-law, Lindsay set up this blog for our benefit once it was discovered that I had cancer.  The idea was to aggregate all our thoughts and updates in one place as to remove the burden from Natalie and myself of telling the same stories repeatedly.  A couple of days ago she transferred the Admin rights over to us.  Yesterday, I opened up the blog dashboard and looked at the viewing stats. I was amazed to see that this little blog has had over 25,000 page views in just over a few months.  Views were coming in all over the place.    When I told this to Nat she said, "You have a lot of friends...".   But I have seen the comments and heard the feedback, all enough to know that more than half are clearly Natalie's friends, interested in her welfare and such.   This got me thinking in depth last night in bed, about something I have been pondering about for some time, regarding Natalie as my "caregiver".

"Caregiver" is a formal term and one that I really learned in Massachusetts while living in the Hope Lodge.  Every cancer patient there must have a formal "Caregiver", usually a spouse, but sometimes an adult child of the patient or a parent or sibling, or even a friend.  A caregiver is someone that:

• Takes care of someone who has a chronic illness or disease, in my case Cancer.

• Manages medications or talk to doctors and nurses on someone’s behalf, because of my mental emotional state, I was unable.

• Help bathe or dress someone who is frail or disabled.  I couldn't put on my socks and shoes and such.  

• Takes care of household duties.  Nat has done a lot of heavy lifting the last several months.

Natalie was and is my full-time caregiver.  Our friend Tami from Layton who was in Massachusetts the same time as us, has had a number of caregivers working weekly shifts; her husband, her sisters, her daughters and friends.   I learned what a caregiver is by first-hand experience and by close observation of others in our similar circumstance.  Unless you have actually been cared for, or have been a caregiver yourself, it is highly unlikely, in my humble opinion, that you have any idea what they do or go through.  As I thought about this last night in bed, as Nat slept, I cried just thinking of all she has done for me and sacrificed personally.

As a patient, and myself as a cancer patient, I believe, we in many ways have it easier than the caregiver.  In my case, my diagnosis came as a shock, so much that I really didn't believe it.  I felt healthy and quite frankly, invincible.  To this day, despite my arduous journey, I have seldom had a thought that I was going to die or that my mortality was in jeopardy.  Clearly my life has changed and I am not foolish enough to think that my life may not come to an end sooner than later, but I have adapted my thinking and perspective on life.  For example, I am little less concerned about retirement planning, and more concerned about the relationships I have with my wife and children and others today.   At the the end of the day, my life is mathematically, "x".  On the other hand, for Natalie, her life is (x + y), where "y" is her life after I am gone.  "y" is such an uncertain, scary thing for Natalie to think about.  Does "y" begin next year, in 5 years, or 25 years.  We don't know.  I don't think about it like she would.  Is "y" a time when she cares for the kids alone, or see our daughters get married by herself.  In fact, as I recover and become able to carry out normal activities, like going to work and even leaving town on business, Natalie can sometimes see an "empty" house  and what it would be like if I was gone for good.  I may cry about possibly missing out on many experiences and life events, but it is a much scarier proposition to consider doing all of that alone.  So much for the dreams of growing old together....    I still have no doubt that we will grow old together, but cancer sucks and is a harsh reality that has a tendency to alter our outlook on life, whether realistic or not.  This fact alone is basis enough to know that caregivers have a difficult road, maybe not to the physical extent as the patient, but clearly the mental and emotional anguish is more difficult, at least in our case.  The thing that sucks about cancer is that it is always with you, whether you are "cured", it is in "remission" or if you have told there is "no evidence of disease",  it remains in the back of your mind and it is always a possibility that it will rear its ugly head at some uncertain time down the road.  No matter how positive one can be, once you have cancer, you always have cancer, and this is especially true to the mind of the caregiver.

Caregivers are special sort of people.  Unless you are a nurse or in the hospice industry, most caregivers are in the positions by no choice of there own, but by circumstance.  Generally, it is by these circumstances that the "cream rises to the top" and best in these people come out.  I think once in a while there is the cream of the cream.  In my case, I am only so lucky to have such a person in my life, in Natalie.  No words can express passionately enough what a truly wonderful caregiver I have in Natalie.

First off, let me back up and say that I thought I knew what love was all about.  I thought I loved Natalie.  You would think in 16 years of marriage and 4 children later, that we have been down about every road and challenge and knew the person with whom we are wedded..  She thought she loved me much in the same vein   But it is amazing what cancer can do to a relationship.  Cancer sucks, but if there is anything positive about cancer, it has to be how it has truly brought us together like nothing else we thought possible.  We look back at some of our arguments and disagreements and laugh at how petty and silly those differences were at the time.  It is amazing how cancer can put other trivial marital problems into perspective.  Nat and I love each other more today than we ever have in the past and it is sweet.   I really have a difficult time myself still, trying to comprehend how someone can love me like Natalie loves me.  I am sick and frail. I can't put on my own socks.  I can't keep my meds straight.  I sleep all the time.  I don't help out around the house like I used to be able to do.   Yet through it all, Natalie is singularly focused on caring for me, and I know it is because she loves me.  Wow.  I cant even type this without shedding tears.

I have been told and I have read that being a caregiver can be rewarding.  But it is undeniably stressful as well.  There is no doubt significant anxiety, stress, irritability and even levels of depression that accommodate this "un-chosen" job.  While we have had no shortage of good friends, neighbors, family, the kids teachers, and strangers providing immeasurable help and the continuing offerings of help, there is still "pride in ownership" and getting things done independently.  So you may hear "no, we are quite alright".  To a large extent, as I get better that is true especially concerning the physical matters.  But I think as it pertains to the emotional and mental matters, help and support is always needed, maybe more so now than ever.

If you know a caregiver and you think that a caregiver is probably getting all the help they need, or they are always on the phone getting a call of support or a quick visit, and you think, " I am probably just 'piling on'" if I want to help.  That is probably the time when that caregiver has no one calling, and no one visiting, and no one just saying "Hi, I am thinking about you".  If you are a person that has a friend that is a caregiver when things seem to be getting better and their patient is on the mend, I can guarantee that care-giving friend needs you now more than ever.  Not a meal.  Not a fancy card. Not a gift basket.   They need that true friend and friendship.   They need a listening ear and that shoulder to cry on, whenever that might be.  They need the friends that are willing to talk about the tough things, the deep things, the things that make people cry. The things that only true friends will talk about. It is easy to be a friend when times are good and easy.  To be there when things are hard and times are tough, is the best measure of  truly good friends.   Caregivers need the friends that are there regardless of the circumstance, especially  when all seems well, when it is the least obvious and the need is recognized.  Those are often times, the hardest times for the caregiver...when by all appearances things look hunky-dory.

So while the bulk of the blog has been about me and my journey with cancer, I want everyone to know it is as much about Natalie and her journey as well.   I am so thankful that her friends and family have recognized this and rallied behind her to support her this journey with me.   There is no way I would be here today without her.  There is no way I would want to be here without her.  She is a rock and I thank God every day she is the mother of my children.

If you ever think, "Is there anything I can do for Nate".  The answer is yes.   Continue to support and be the amazing friends, family and neighbors that you are to my wife, Natalie and my children.