In the past
four and a half years, there have been a lot of questions. Questions we have for the doctor. Questions we ask ourselves. Questions others ask. Questions we ask God. For some we receive good answers, some
not. For others we give good answers,
but not always. And then there are those
questions we have a programmed response for which is not necessarily an
accurate one. Here are some examples of
the questions which have become familiar:
1. How are
you? (George)
The answer
to this question is variable and may depend on who asked the question. For acquaintances it is less likely to be 100
percent truthful.
George often
has programmed responses when asked this question. Typical responses have been and are: “Could
be better, could be worse, middle of the road is okay with me.”, “I’ve had
better.”, “So-so.”, “I’m doing okay.”
None of these are clear indicators of how he is really feeling.
Only in
recent months has he started to tell his closest friends something that is
closer to the truth. “I’m not having a
good day.”, “It’s been a rough week.”, “I’m tired of being tired.”
I can
generally tell how he’s doing but sometimes even I need to dig deeper. I can see he is constantly exhausted,
sometimes experiencing discomfort, mentally struggling with all that is going
on. Grappling with the progression of
the disease.
2. How are
you? (Dawn)
Again, the
answer given may vary depending on how close I am to someone or how much I’m
willing to share. I, too, have
programmed responses.
“I’m doing
okay.”, “I’m doing the best I can under the circumstances.”, “Fine.”, “I’m
keeping busy.”
For the
most part, these statements are accurate.
I am honestly doing the best I can given what is going on. I do manage to keep busy, though for the
first three months of the year it was busy just trying to keep up with and
manage all the changes going on with George.
I don’t
feel stressed out, but my body will tell me differently sometimes. I take more naps now than I used to
(actually, I give in to when I’m feeling tired instead of fighting to keep my
eyes open). I started to get shingles
(which I understand can be stress induced).
Fortunately, I caught it early and it didn’t do a full-on break out and
it was in a place that was manageable to deal with (my arm). My blood pressure is also not totally under
control even with medications, a definite indicator of stress (and lack of
exercise).
I struggle
to find the balance between my needs and George’s. For three or four months I was able to
develop a morning routine which was comfortable and allowed my “my time” to
take care of myself. All of that came to
a halt, in part due to things at home and in part due to weather (rain) and
season (too dark early in the morning).
Once the routine is broken, I find it very difficult to start back up
again.
I am trying
to do some things for myself health-wise.
In January, I had surgery on both hands for problematic trigger
fingers. Though my fingers do not
trigger any more, there is still some pain at times associated with it but
eventually it will go away. Earlier this
week I went to an ENT for a problematic sinus issue and found out I have a
deviated septum and likely seasonal allergies (which never were a problem for
me before). It is likely I will have a
minor procedure to fix this sometime in May.
Last year I
was diagnosed with mild clinical depression and am in on-going treatment for
help with it. The many years of being a
caregiver have taken their toll on me.
I’m sure this is not a surprising fact to others in the same situation.
3. Is there
something I/we can do for you?
When
someone is diagnosed with cancer, others feel the need to do something. They don’t know what and, early on, we don’t
know what they can do either.
Food? Food is probably the major thing that people
feel they can offer and is often the first thing they come up with.
After the
first surgery, meals were arranged for us.
The only problem was, George wasn’t in the mood for food as his taste
buds were off. This meant the meals
brought to us were consumed only by me.
He never got to enjoy one single meal.
Periodically
we’ve had people bring us things to eat.
Since George’s diet has changed depending on what he was experiencing at
any given time, the response to this question has also varied. I don’t want tons of food which will go to
waste if I don’t eat it (or go to my waist if I try to eat it all), so small
portions are good - and if it can be frozen for a later date, even better. I’m pretty simple when it comes to food and, in
the past two months, I have found the wonder of grocery delivery and DoorDash! I’ve been consuming some of my comfort foods
(probably way too much lately).
Help around
the house? I’ve never been a clean freak (just ask George) so my priority has
never been to have a clean and spotless house.
I drive George crazy because I have projects in the living room, things
I keep close to my chair so I can pick them up when the mood hits – even if it
may be weeks before I actually tackle them.
I can manage a vacuum now and then, a dusting now and then, spot clean
the bathrooms regularly, etc. I love to
go pull weeds when I’ve got the time as it is good to be outdoors in the
sun. So the routine things about keeping
house are okay, I don’t need help.
I have
learned to ask for help when there is something I can’t do. A repair that I can’t do. George feels bad that he can’t do them
because this was his job. Nowadays,
depending on what the problem is, I either ask for help from a friend or I call
in a repair person. Recently I hired a
plumber to fix a shower leak issue. A
neighbor had offered to help and had tried but couldn’t fix it (which was so
nice of him to offer) – but he also recommended a repairman. We’ve had a bunch of issues over the past six
months and it’s cost a pretty penny to get them fixed by professionals. I’ve learned to assess the problem and handle
the repair in the best way I can.
The best
response we can give to this question is that we can always use your
prayers. Prayers are never a waste of
time in our books.
4. Is he up
for visitors?
The answer
definitely varies. It has depended on
where he was in this journey.
These days,
visitors are a nice distraction – but anything more than an hour or two in a
day is tiring for him. It’s better when the visitor is able to chat with both
of us so if George feels the need to nod off, he can. People have been good about checking in with
me first. They always worry they will
wake him up. Honestly, anyone coming
over even for a scheduled visit may wake him up as that’s what he primarily
does most days. Unless he is having a
particularly bad day, being woken up is okay.
5. How has
this impacted you? (George)
Mind you, I
am speaking third person here. I am
making commentary based on things George has said or that I have observed.
Impact #1: Shortly after diagnosis in
2014, what I observed was a man who had difficulty trying to discern what to
do. I had to take control of making
appointments (something I’ve done ever since then). He has always been the type of person who
needs to mull over, think about things or digest things (his words). Sometimes he takes his time to do this – sometimes
to his detriment. Then I have to step in
and nudge him forward as he gets “stuck” in his brain.
Impact #2: In the past five years, he has needed to relinquish his driving on
multiple occasions. After surgery in
October 2014, he didn’t drive for about three months. After he broke his neck in December 2015, he
didn’t drive again until April 2016 only to stop again after cancer surgery in
July 2016. Then he stopped again until
December. In August 2017, after he
passed out due to dehydration, he stopped again and except for a few occasions,
has not driven since then. This is
difficult for him. He was used to being
in control of the steering wheel. He was
used to running errands on his own. He’s not comfortable driving because of his
fear of passing out or having something happen, but he does not want to give up
his right to drive just in case he needs to do so sometime. Driving is one of
the major players in ones’ psyche. None
of us ever wants to give it up. This
year the DMV is requiring him to take an eye exam and come in person to the DMV
to renew his license. Yet, signing up
for an appointment is likely to fall to me.
Impact #3: Perhaps the biggest impact
this disease has had is in his ability to continue his career. Giving up his job to go on long term
disability wreaked havoc on him in the beginning. For men, their jobs are what they feel
defines them. It’s something they have
done for their entire lives. It gives
them a sense of pride and accomplishment.
To suddenly be faced with the prospect of not working breaks their
spirit. They are used to being the bread
winners, taking care of their family. If
they can’t work, then who are they?
(This could be a dilemma for women too, but maybe not to the degree it
is for men.)
Stopping
work leaves them with a lot of time on their hand. George was lost for a long time. He didn’t know what he was worth anymore (and
still has problems with that issue).
“What good am I?” he sometimes asks.
As the disease has progressed and his energy levels have gone from okay
to non-existent, he fails to see his value as a man, a husband, a helper. He feels worthless in a world where he used
to be in charge. He wonders how anyone
could love him and often asks, “Do you love me?” and “Why do you love me?” The answer is “You are still the same man on
the inside. You still are kind. You still are a man of integrity and honesty.
You are still a man of faith. Those
things have not changed despite your physical transformation.”
Impact #4: Over time his memory has
diminished, his ability to find words or names at times can be challenging, his
sense of day and time sometimes wane. I’ve
observed George go from a confident, take charge kind of person to someone who
has little confidence and no longer even tries to be in charge. I have been in charge of his medications as
well, something constantly changes. He
is not able to keep track of these, let alone remember the names of the
medications, especially newer ones.
6. How has
this impacted you? (Dawn)
I’ve always
believed that the experiences one goes through over the course of their
lifetime is for a reason. “Teachable
moments.” We may not like them or
understand them, but we still have to go through them. I think my believing this has truly helped me
with all of the twists and turns which have taken place in my life. Some people don’t understand it, can’t
believe how I stay positive through tough times. For me it is simple, I have a God and I have
faith and trust that He will help me when the going gets rough.
It goes
without saying, then, this same truth applies to this circumstance… this
journey through the “C” word.
Impact #1: I have truly had to learn how to navigate a world totally foreign to
me. I’ve never been a technical person
or one who understands the world of science, so although I’ve had to try to
understand some of the things about Pseudomyxoma Peritonei and Appendix Cancer,
I will never be an expert and I do not wish to learn about all the facets of
this disease (I marvel at those folk who understand the various kinds and can
speak with great knowledge about them and the various treatments). I should also note I should never use the
word “never’ – because sometimes God will turn those words upside down on
me.
What I have
learned is everything I need to know about George and his disease. I am an observer. When George is in the hospital, I watch the
nurses, I listen to the doctors and the nurses.
Over the past five years, he’s
been in the hospital for more than 80 days!
For many of those, I’ve stayed with him day and night. I’ve also gone with him to countless doctor
appointments – surgeons, oncologists, etc.
I take notes. I ask
questions. I am very well versed in his
care to the point some people will ask if I’m a nurse. My answer is always, “I don’t care how much
knowledge God gives me and makes me learn regarding George’s care, I DO NOT
want to be a nurse.” It doesn’t mean
that somehow God won’t use what I’ve learned somewhere else down the road. He is not done using me yet!
Impact #2: Between caregiving first for Etta (from 2006-2016) and George (from
2014 to current), the ability to plan for anything has been difficult. It’s been thirteen years of trying to make
plans, hoping that they work out.
Nothing could be done impromptu when Mom was alive as we always had to
make sure it worked out in Rosemary’s calendar.
When George was diagnosed and I had double duty for two years, my brain
was on high alert 24/7 (and coupled with that was the fact I was working 30
hours a week). I used my vacation time
to stay with George for his multiple overnighters. Since leaving my job in April 2017, we had
hoped to be able to do spur of the moment things such as a weekend away. However, this never came to fruition as
George’s health deteriorated. In the
past 10 months between chemotherapy and wound issues and now having to
administer TPN and clean a gnarly wound every day, getting away is impossible. It seems every time I make plans to be away
for more than half a day, something happens with George. He’s landed in the emergency room two of the
three times I’ve gotten away. Between
December and late March he was either in the hospital or at Dr. B’s office
every other week. Now, with TPN, I can
get out for a few hours here and there when he is not connected to his TPN
infusion.
Caring for
mom was like having a three year old in the house. It often meant that I would be awoken nearly
every night as she made at least one trip to the bathroom and I had to listen
to be sure she got there and back without falling. Every night and every
weekend I juggled between her place and ours to ensure she ate, drank, got
ready for bed, took her meds, etc. It’s
no wonder I can’t sit still as I’m so used to having to get up often to tend to
someone’s needs.
All of this
has made me learn to be patient…. I am typically a patient person, but every
once in awhile I yearn for something more.
Impact #3: Wife versus caregiver. I
wrote about this in a blog some time ago.
The lines between wife and caregiver can be very blurry. Moving between the two of them like a game of
tennis, bouncing back and forth over the net.
More often than not, I feel like a caregiver more than a wife – in the
traditional sense of a wife anyway. The
longer time goes on, the more distant it becomes. Aside from holding hands and occasional
snuggle time, I give more than I get as his needs take precedence. The love is still there – the passion long
gone. This disease has taken its’ toll,
has become all consuming of any energy we have to put into a traditional
husband/wife relationship.
Impact #4: Household duties and Bill
paying. More recently, everything
pertaining to the house has become my responsibility to not only take notice of
but to take care of. Small tasks that
George used to do have fallen to me.
Some I can fix, others I have to find someone to help with – often
meaning we are paying a fair amount of money for the repair. Bill paying, once something George dutifully
did, paying bills the moment they came in, now is my duty. George rarely will even go into the office,
let alone take the five or ten minutes to log on to his computer and pay the
bill. For the first time (well, maybe
second) since we’ve been married, I did the taxes. This is not too difficult as we use TurboTax
and that expedites everything. This
means that I am: wife, caregiver, bill
payer, household overseer, nurse. It’s
no wonder my brain rarely turns off as it is trying to plan for everything that
may need to be taken care of. I am a
proponent of keeping a pad with a list of the things “to do” because if I
don’t, I will surely forget something.
QUESTIONS FOR GOD
1. Why
me? And Why this cancer? (George) George often thinks about these
questions. We will never know the reason
why or why this cancer. Yet it is
something he ponders.
2. Why would
God do this to my mom twice? This is a
question I know both of my daughters ask themselves.
This is what I believe… God put me into the
lives of two men who needed me. One who came from a broken family and needed a
woman whose easygoing temperament could balance out his various and assorted
behaviors. From this relationship I had to learn how to keep us afloat as he loved
to spend, I witnessed a person who could play like a child but who was a quick
learner for all things mechanical and a dedicated worker. This man gave me two
of the greatest gifts on earth, my daughters.
He taught me the power of resilience, of overcoming ones past by
learning to do better, be better. He
showed no prejudice towards other races (only stupid people, LOL). And I, in return, showed him compassion,
helped return him to faith in God, stood by his side even when things were
difficult for us. He was taken from this
earth far too soon for our liking. It
was like the carpet got pulled out from underneath us and it took us a long
time to find our balance again. He would
not like us to give up on life, to give up on love, to give up on each other. He would want us to go on.
After Mike’s journey was done, He put another man in my path.
This man needed different things. He, too, was broken but in different ways. He
needed someone he could learn to trust to be there for him. He had a daughter
that needed a mother figure.
He ended up having a mother that needed help. Help I could
offer willingly because I had the time. Also, if it weren’t for her, I wouldn’t
have this home I live in. In a weird, twisted sort of way, Mike also helped me
live in a home with something I had told him about when we were dating… I
wanted a house with a white picket fence.
Due to the circumstances of his death, he did help me find and purchase
that home – just without him here with me.
Ultimately, God knew George would need a partner to take care
of him when diagnosed with cancer. Without me, he would not be able to live.
He taught me how to better manage money. He had a salary which
allowed us to maintain a beautiful home and provided health insurance to cover
sooo many things.
God has given me the strength to be what these men
needed. I believe I was brought into their lives and them into mine for
reasons that are bigger than me. He was
using my talents to be the partner they needed – and they were the partners I
needed as well.
Between both men, I will be able to live debt free and not
have to work for the rest of my life. I will be able to do things I never
imagined.
That is the gift I have been given... to be loved by two men,
to be financially independent, to have three wonderful daughters, to know I am
now more than capable of living my life when they are gone in a way I never
imagined.
My faith has kept me strong to handle everything that’s been
tossed my way. In my lifetime I’ve had to learn unimaginable patience, to learn
to set aside prejudices, to rise up and do whatever it takes to allow loved
ones to be at home despite their illness. I’ve learned these not only from
these two men, but from my family, my children, my friends...
I know there’s a higher being watching over me. For me it us
God. I pray my children find a what works for them. Maybe it will be God, maybe
from another spiritual guide. One thing I’ve learned, is that with God in
your life, you will always be able to find a way to keep going, to muster
through the bad times and to recognize the good times and appreciate them. Our children have (or are) struggling with
those because all they can see is this bad thing is happening to their mom (and
to them). We don’t always know the “why” of things. Sometimes we find out later, sometimes the
question is never answered in our lifetime.
But with God, with Faith, with Love and with Hope, I know for a fact we
can not only make it through tragedies, we can come out stronger on the other
side of them.
I can
understand my children’s anger at God.
Yet I know God still loves them and one day will show them what it feels
like to be at peace, to give them back their faith and their hope.
QUESTIONS BETWEEN US
1. What’s
going on in your head? Or Where is your head at?
I often
look over at George and he is staring off into space. Or he is lying in his chair, eyes covered,
yet not asleep. I can sometimes tell he
is struggling with something by his demeanor.
So I’ll ask him these questions because I’ve learned if I ask, he will keep things bottle up inside and
that’s not good.
2. How are
you doing? (George to Dawn)
He asks
this of me fairly regularly. He wants to check in to see if I’m particularly
stressed or feeling burdened.
For the
most part, I am doing pretty well. I go
through periods of time where I can’t seem to get my focus back – especially if
there’s been a marked change in the schedule for caring for him or if we’ve
spent time at the hospital, etc. I’ve
learned to set my self-expectations fairly low for the time being. I do what I can when I feel like it. I don’t
feel guilty that the house isn’t always clean – it’s not important right
now. If I’m tired, I’ll take a nap. If I’m ambitious, I use the momentum to get
things done. I use my constant “to do”
list as a guide and pick things based on what I feel like getting done.
The hardest
thing for me to do is to not only make the time to get some good exercise in,
but to feel like doing it. Once I get
off track, it is very difficult to re-insert it into my life. I’ve had to reconcile to be okay with not
exercising for the time being, because I have to preserve my strength to just
get through the day. My brain muscles
can only do so much.
3. What are
you afraid of? (George)
I know the
answer to this because we’ve talked about it amidst ourselves and with
others.
George is
afraid of dying. He is afraid of what is
coming down the road. Pain. Fear of leaving me.
Of leaving his family. Fear of
losing control of bodily functions. The
process of dying. All of this is an
unknown – so fear is normal. That
doesn’t make it any less scary.
4. What are
you afraid of? (Dawn)
I’m afraid
of having to watch him suffer. I pray
when it’s time for him to go it is swift and without pain. He’s suffered so much these past five
years. He is a shell of the man I used
to know.
5. Will you
be okay? (G to D)
I am not
afraid of being alone because I have felt somewhat alone for awhile now. He is physically in the room, but he is
mentally not here. God has been
preparing me for what is coming. As
mentioned above, I will have all that I need to live life in the way he wanted
me to – “top cabin”. I’m sorry that it
won’t be with him. He always wanted to
take me places, but his body failed him much earlier than expected.
6. How
do you think things will change/be for you when I’m gone? (G to D)
For the
first time in over thirteen years, I will have only me to answer to. I won’t have any restrictions for when I do
things. I can travel to places I’ve
yearned to go to for a long time. I will
be able to spend more time with our children and grandchildren, more time with
my sister or other friends. My time will
truly be mine.
7. Will you
miss me? (G to D)
Of course,
I will miss you. Probably more than I
think I will. In some ways, I’ve missed
you, missed us for the past few years as you’ve slowly melted away before my
own eyes. I’ve missed: you tinkering in the garage on some sort of project, you
building some amazing things in the backyard, your taking care of the things
the ‘man of the house’ generally does. I
miss the intimacy we once shared. I will
miss holding your hand, snuggling up to you while we watch TV in bed. I will miss fighting over control of the TV
programs.
Yet, I will
always hear your words in my head, your sage advice: “Be safe, Dawn.” “Drive safe, Dawn.” “Don’t give out your personal information.” “Always set some money aside for a rainy
day.” “If you save your nickels and
dimes, the dollars will take care of themselves.” (hmm, that doesn’t sound
quite right, but it is along those lines.), “lock the door even when you are
home”…
8. I know I
don’t have the right to ask, but I don’t want you to marry again
After Mike
died, there was no doubt in my mind that I wouldn’t marry at some point. I was still young, only 43. I still had a lot of good years in my
life. I still had a lot to offer to
someone else. I wasn’t fully looking for
a life partner when I met George (it was just a few months after Mike
died). I was looking for companionship
beyond my circle of friends and acquaintances.
Someone who might be able to listen to me without the sad look that my
friends were giving me. God sent George.
Now, at 62,
I am at a different place in my life. These past few years have been tough for me as
a wife. I need time to recover from the losses in my life. I need time to chill out and just “be” for
some time. Tongue in cheek I tell George
– “When you are gone I will have buried two husbands. I do not want to do this again.” I am done.
I am burned out. I have no desire
to have a close relationship with anyone else.
Not right now. I can’t say never because I don’t know what God’s plan
is. It will be time for me to be
selfish. To think of myself and my
needs. To do whatever my heart
desires. To let my hair down and have
some fun.
I pray that
God will allow me that time. Time with
my family to heal from the past thirteen years – years where I’ve been a caregiver,
years where I lost my parents. Years
where I’ve watched people I love deteriorate before my very eyes. That He will provide me with good health for
a long time to come. That He will put
new people in my life to have fun with, to do things with, to go places with. That He will allow me to just “be” for as
long as I need it. That’s what I pray
for.
My last
question to God is: Will You give me a long and
healthy life to continue to serve You, to continue to live my life to the
fullest extent possible? I wonder what
the answer will be.
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