Palliative Care

My husband has not died: yet. Just finishing chemo. Diagnosed less than year ago. Before cancer diagnosed, Stage 3 heart failure. and amlyodosis.!All through covid we’ve been at home or hospitals or labs or doctors or pharmacy. Family far away. Some not interested. Local friends have died or moved away. Cardiology referred us to palliative care last month. Prognosis 2-18 months.
My heart is broken. It feels
like breaking up for an eternity,
I’m tired. Sad. Alone emotionally.
I am also done with being told to buck-up.
Not at all supportive as they seem to ignore where we are emotionally, our current experience emotionally.
Would really appreciate hearing from someone to whom my story rings a bell.

 

LMG, HUGS to you, I hear you and want you to know the people on the site are here for you.

 

Hugs are good Thank you Ceee

 

Dear LMG, my name is Patti, my heart knows all that you
are feeling. I’m deeply sorry, I understand totally. My dear
Husband Jack had Parkinson’s Disease , for 24 years, he was only
57 when diagnosed, struggling with the Disease,
I had him to retire from working,
It continued to be very progressive thereafter. God called him
home to Heaven 11-7-2016 . We were married 61 years.
I totally took care of him at home 24-7 due to him
falling and TBI, his last nine years.
I contact hospice couple weeks before his passing.
I had no family in the state nor friends to help, they
none knew how difficult those years were for Jack,
nor how painful it was for me. I have thanked God
daily for giving me strength thru those years to do
the very best I could for him. I felt Jesus
caring me daily through those years, I feel HIM
doing so these last 5 and 1/2, and know HE
always will. I would like to ask your first name,
and that of you’re husband. Please, I
know what your going through, reach
out to me anytime, you can private
message me if you want, no one should be
alone in taking care of a husband , wife or
partner, nor ever be alone.
God sustains us but HE wants us to be here
for one another thru all times and circumstances.
Blessing for each of us, many here have been
caregiver for their beloved husband, wife,partner,
Please stay with GIC, praying for you and all your
needs today and always,I know many others will be
with love and caring hearts are going to reply to tou.
Hugs, love, prayers,
Blessings, Patti

 

LMG,

I had to reach for a tissue while reading your very moving message. I'm so very sorry you're husband is suffering with multiple incurable diseases. I hope you know how truly sorry I really am, because words, especially when "talking" to people on GIC, seem so shallow at times, now being one of them. I can relate to just about everything you wrote. My husband, Bob, suffered from many incurable diseases too, all treated as chronic illnesses, controlled by medications. By the time he passed away, April 11, 2021, at 3:45 a.m., he had a specialist for just about every body part. Up until we moved out of state, in the very beginning of 2018, although Bob was so sick, the side effects from medications were controllable, and we managed to enjoy a relatively good life, going out for dinner, traveling with friends, etc., etc., etc.

In the beginning of 2018, almost at the same exact time we moved, Bob's health began a rapid downhill spiral. I became his full time caregiver. I had to find a new team of specialists and found that the only hospital with the equipment and knowledge to treat him, was depending upon traffic, anywhere from an hour to a two and a half hour drive from our house. We had no choice. Not one doctor in the local hospitals had the expertise, and there are very limited specialists where we moved. (The reason why we moved where I'm now living is a very long story, I won't go into it now.)

Backing up quite a bit, Bob was first diagnosed with type two diabetes in 2005, had high blood pressure, high cholesterol, suffered a major heart attack on February 3, 2009, and was (correctly) diagnosed with kidney cancer, that by the time we got this diagnosis, had spread to his lungs. He had a major surgical procedure on December 27, 2016, to remove one of his kidneys, scrape his vena cava (it was filled with cancer), and almost died on the operating table. It was a 7.5 hour procedure. Very long story short, once he recovered enough from the surgery, he began at home PT & OT, and started taking Votrient, an oral immunotherapy drug to treat the remaining cancer. (Kidney cancer doesn't respond well to traditional chemotherapy.)

Bob did really well on Votrient, but was forced to retire at the end of 2017 because even though the side effects were manageable, he got tired very easily, and couldn't work an eight hour day. (He created and managed a quality control department in an oil and gas company.) While he loved his job, it became too much for him to handle, given his numerous health conditions. However, he was still able to enjoy a decent quality of life. We adjusted our lives so Bob could enjoy the things we loved doing best, but didn't stop "living." We made the decision prior to Bob's health beginning that rapid downhill spiral at the end of 2017, when Bob stopped working, to move to a much warmer climate, not thinking that the beginning of the end, would happen so soon after our move. (One thing I forgot to mention, Bob was diagnosed with Parkinson's about one year prior to his death, although he had many classic symptoms way before this. During the very end of his life, he began losing his memory, that spark in his eyes, that zest for life seemed to grow dimmer and dimmer, until that horrible moment... when it was gone forever.)

I wanted to give you enough information so you "know" enough about me to understand that I was in a similar situation to yours. I refuse to sugar coat anything, especially not on GIC, so all I can say, is it SUCKS!!!, TUTTAM!!! (Total Understatement to the Absolute Max!!!). Please!!! be very gentle with yourself. You are going through, what I believe to be, is the very hardest, most difficult time in your life. A very good friend, who became a widow before I did, told me one of the very first times we got together, (about two years after we moved here, when Bob was so very sick), that I was "going through the very worst time." She said life got easier, after having suffered the absolute worst heartbreak imaginable, her husband's death. I didn't understand this. How could life get better after Bob died, the one true love of my life..., my knight in shining armor??? Lots more to this, but about ten months after Bob died, I finally began to understand, and agree with what my very dear friend said to me, even though I'll always miss Bob with all my heart..., right up until the moment I'm reunited with him again.

While I was Bob's full time caregiver, (I would do it all over again!!!, TUTTAM!!! There is absolutely NOTHING!!!, I wouldn't do for Bob.), I didn't have time to take care of myself, emotionally or physically. My days/nights revolved around frequent visits to specialists, lab tests, MRI's, CAT scans, ambulances to the local hospital, fighting with staff at the local hospital to transport Bob to the only hospital in this state that could handle Bob's very complex health issues, finally..., admissions to that hospital, OT, PT appointments, and near the very end of his life, two stays in acute rehab facilities, all during COVID. It SUCKED!!!, TUTTAM!!! I was tired..., tired beyond anything I could have ever imagined..., unable to get much sleep, always worried about Bob, checking on him, making sure he was breathing (he had sleep apnea). So much more I want to tell you, but stopping here (for now.)

What I want to tell you is that while I miss Bob with all my heart, and always will, now that he isn't here physically, less than 24 hours short of a year later, life HAS!!! gotten better. I've slowly gotten used to living alone, and all this loneliness (a story for another time). I slowly began taking care of myself both emotionally and physically. I found GIC about two months after Bob's death. The advice, and friendships I've made on GIC are one of the BIGGEST!!! reasons why I'm doing so much better.

GIC has become my safe place to visit... Everyone here "gets" it. We offer each other advice, but you can take it or leave it, GIC is a judgement free place, we will be here for you, no matter what, we "listen" to each others' stories, cry together..., laugh together... (Yes!!! there are lighter moments), etc, etc., etc. I'm so very glad you found us, but so very sorry you had to. I hope you'll stick around, have the opportunity to get to "know" us, give us the opportunity to get to "know" you... I hope you will become part of our GIC "family...

For now, please be very gentle with yourself. Do whatever you have to do to make it through each and every day. Know that you are NOT!!! alone. We are here for you, and will continue to be here for you... Try, although I know how difficult this can be, to rest when your husband is sleeping, to eat as healthy as you possibly can, take advantage of everything that palliative care offers you. (I wish with all my heart my husband wanted palliative care, but this is another story, for another day.) Take advantage of those moments when your husband is feeling up to it, to talk, I mean really talk..., say all the things you want to say to him now. This is so very important...

Got to go... but first, sending you lots of hugs and love, wishing you peace, all of us peace. DEB

 

LMG, words can't fully express how sad I
am to hear about your husband, and what
you're going through---- alone----- with
any support. Anybody who tells you to
"buck up", is an ass. I'm glad you reached
out to us at Grief in Common. My wife,
Linda, died suddenly , after fighting
cancer. She was 68. We were married 25
years, no children. That was 3 & a half
years ago, & I had to see a grief counselor,
bc I had no friends or family. Linda was
my best friend & family. My grief therapist
suggested GIC, but I didn't join until July
of 2021. May I ask your name, and that of
your husband? It helped me to say
Linda's name to my good friends, who
"get it" , here.

 

P.S. I chose Van Gogh as my user name, bc
he was a tortured soul, as I was, when my
soulmate, Linda, died. Welcome to this
site. My name is Lou. I see by your
info that you live across the country from
me. I live on the northern coast of
Massachusetts. Hope you stay on GIC.
Lou

 

Deb, this was one of your best "books" as
you have said. Every time you write
about Bob's many illnesses & your 24/7
loving care for him, I am so moved by
your strength & your love for him. You
have come so far , in your new life, since
I "met" you , when I joined GIC in July of
2021. I guess I have, too, despite my
"intermittent grief". Hope you can get
through the sad one year anniversary of
Bob's death. We GW are always here for
you. Lou

 

I feel for you. I just experienced the death of my husband after he received a heart transplant. He was in the hospital for 4 months and was never able to come home after the transplant. We were refered to palliative care in the last 2 weeks. I am so sorry, I too have felt tired, sad and alone. I would love to talk with you some more

 

CathyLynne,

Once again, words seem so shallow at times, especially when "talking" to our GIC "family," so I hope you know how very sorry I am to learn that your husband recently passed away. Joining GIC after Bob's death, was one of the very best things I did to help myself. The support you'll find here is the absolute best!!!, TUTTAM!!! (Total Understatement To The Absolute Max) There is a group of us who usually hang out in The Loss Of Spouse section of this site. Although I'm sure we will find you wherever you post, you might get responses faster if you visit us in our GIC "home."

Lou, one of my GIC friends, who you've already met, came up with a name for us, TGW (The Grief Warriors). Each and every one of us is truly a GW!!!, TUTTAM, fighting daily battles with Mr. Grief (another one of my GIC friends, Karen, screen name, CJPines) began referring to grief, as Mr. Grief), determined to find a way to move forward, in spite of this total heartbreak. No matter how challenging life has become, TGW are always here for each other, to "listen," to share experiences, to offer advice. This is a judgement free place. You can take our advice, or leave it, we'll be here for you no matter what.

Right now, with your husband's death being so recent, the most important thing you can do is to try to take the very best care of yourself you possibly can. (I know this is easier said than done!!!) Try to sleep when you can, or at least rest often, and as much as you need to, eat as healthy as possible, and step outside, get some fresh air and sunshine. Unfortunately, soon after our spouses, or the one true love of our lives dies, we're swamped with paperwork that has to be taken care of, plus decisions have to be made about funeral arrangements, etc, etc, etc.... It might help to make a daily to do list of the things that have to be taken care of right away, everything else can wait.

A common problem many of us experience is known as "foggy widow/widower's brain." During this over the top stressful time, it can be very difficult to remember things. Even after 15 months, I still experience "widow foggy brain," one of the reasons a daily to do list is important for me. Also, in the beginning, having been Bob's full time caregiver since the beginning of 2018, I found making a daily to do list gave me a purpose. (I had no idea who I was anymore.) There were days when all I had on my list was to get out of bed, get dressed, wash up. Other days, when I was feeling slightly stronger, I might add a couple of errands to my list. Checking things off the list made me feel like I accomplished something, at a time when I felt like I had no control over anything.

Your world has been shattered and it's going to take a long time to rebuild your life. It's so important that you allow yourself to fully grieve, cry as long and as hard as you need to. I don't want to overwhelm you with information right now, but Lou recommended an excellent book to TGW. It's called "Permission To Mourn,' By Tom Zuba. Tom Zuba has lots of experience when it comes to death. His 18 month old daughter died, followed by his wife's death, and then the death of one of his sons. He not only survived all of this total heartbreak, but eventually found a new purpose in life, contentment, peace, and happiness again. Yes!!!, it IS!!! possible to find happiness again, although it'll be a different kind of happiness, a new kind of happiness where life becomes a combination of sad and happy, a very bittersweet sort of existence. However, I'll take bittersweet over the alternative any day!!!, TUTTAM!!! (Backing up just for a second, I found "Permission To Mourn" so helpful that I bought Tom Zuba's second book, "Becoming Radiant." He also has some You Tube videos which I found helpful.)

I'm starting to get off track. There is so much more I want to say to you, but everything else can wait. Please feel free to ask us anything at all, anything that you think will be most helpful to you, and we'll be happy to share our experiences with you, what worked for us, as well as what didn't work. It's important to keep in mind that the timeline for healing (for lack of a better word, I'm no longer certain there really is such a thing as healing, or if we just get used to the new "normal" we've been thrown into) is different for each one of us. The one thing to keep in mind is that if you do all the hard work grieving forces you to do, you WILL!!! begin to feel better in time. I realized that I was going to be okay the very first time I was able to laugh again, one of those real laughs, not one of those forced, fake laughs, that so many of us have done when in public situations.

The path to feeling better, healing (???) is filled with lots of twists and turns, but TGW will be here to help you brush yourself off, pick yourself up, as you stumble and fall along the way, engaging in those multiple daily battles with Mr. Grief. I refuse to sugarcoat anything, so I will tell you it SUCKS BIG!!! TIME!!!, but it is so much easier, so comforting, being able to share everything with TGW, our GIC "family," the people who truly "get" it.

I'm so very sorry you had to find us, but so glad you did. I hope you'll stick around, give us the chance to get to know you, and you the chance to get to know us. Welcome to our GIC "family."

Sending you lots of hugs and love, wishing you peace, all of us peace. DEB

 

Lou,

I saw this message for the first time today when responding to CathyLynn. Your message made me teary eyed, but mostly only in the very best of ways... I doubt I would be as far along as I am, if it wasn't for you, and all of TGW, our GIC "family."

You and I both have come such a long way since we first met!!!, TUTTAM!!! Sadly, I think "intermittent grief" is here to stay. Bittersweet is part of the new "normal" we've been thrown into, but, and this is another one of those really BIG!!! BUTS!!!, I'll take bittersweet any day over the alternative. It SUCKS!!!, but as Bob would probably say, any day is a good day as long as we're on the right side of the dirt. The best way we can honor Linda and Bob's memories, keep their spirits alive inside of us (as you would say), is to do our best to find at least one reason to LMSO, but hopefully many more, every day we're still on the right side of the dirt.

As always, sending you lots of hugs and love, wishing you peace, all of us peace. DEB

 

CathyLynn, 2 of my favorite widow friends from South Carolina, came through for you, as I knew they would. I am sure you will hear from Patti, from that state, as well as Karen ( cjpines) from
California, & other GW. Patti &
Karen were the first to welcome & comfort
me a year ago. You will know you are
starting to heal when you can smile again,
and enjoy the simple pleasures , like
feeling the sunshine on your face,
as Tom Zuba says. I remember that
moment , when I blocked everything out
and just breathed. You will find our group
to be kind and understanding, but may I
say, bright and funny, too. Deb and Karen,for example, always make me laugh.
Deb has unique phrases, like TUTTAM!!!,
which spice up our conversations. Karen
gave us Mr. Grief, who can attack us when we least expect it. Mr. G paid me a visit
when I was enjoying a bus ride on a
beautiful , sunny,80 degree day. A memory
of riding on the bus with Linda , and
looking at her face, brought tears to my
eyes. I swore softly, looked out the
window, and continued on my journey.
As Helena said, my wife wanted me to be
healthy and to try to be happy. Lou

 

Thank you all for your words and support. School has begun and has been keeping me so busy. I am able to compartmentalize my grief (as my therapist says) so that I am able to work and teach. The hard part is that school is consuming most of me time. There are some many outside requirements that I find myself having to do 2 more hours of work after I get home. This is leaving little time to deal with my feelings. I am seeing a therapist every 2 weeks. She is terrific and has help me so much. I think you guys are a great bunch, I just find myself so tired of being on the computer for work that I don't check in here as often as I really should, but I thank all of your for being here.

 

CathyLynn, so happy to see you on here
again. The last time I wrote to you was
July 8, and I'm not sure you saw my
post. Lou