Posted by Cynthia Mac on Jan 21, 2020 1:59 pm
It is very hard to see a parent begin to “look the other way” - away from life and toward the next stage. Huh. My screen just “went blurry” when I typed that! I know it must be hard for you, too. Sometimes, I think they’re doing the “dad thing” - trying to prepare us for the future, just as they did when they taught us to ride a bike, or drive a car. And sometimes, I think they’re doing this because they feel tired - tired of feeling sick, tired of visiting doctors. It’s probably a combination of both and other factors.
As for you, when I saw your words, I saw bravery and courage. The sheer strength it takes to “not let on” to him how much this is affecting you is a special kind of fortitude. However, even Superman (or Superwoman) needs a day off. You are wise to see the need for some “downtime,” too.
Yup. Others are feeling like that, too. You are not alone.
Posted by Cynthia Mac on Jan 21, 2020 2:20 pm
Dad is experiencing fatigue, too, but not nearly to the level you describe. My dad has had chronic neck pain for many years, and he “wears out” very early in the evening - usually goes to bed right after supper - and he’s up early, too, usually by 5 a.m. In the interim, he is up several times through the night, and each time he gets up, he has a glass of water. So, while it sounds like he’s “out” for 11-12 hours a night, it is broken sleep. Since he’s been on chemo, he sometimes has a short nap during the day, too.
Does your dad live alone? Mine does, and if he was having cognitive issues, I’d be concerned about his living situation.
The recent CT scans have probably given you some assurance that his incoherence isn’t related to his cancer so much as to his treatments. Something you might want to consider is asking the oncologist if a referral to a gerontologist would be appropriate. (That’s making an assumption about your dad’s age, and I’ve seen your profile picture — based on that, he might not be that old!)
I love your profile name — maybe I should change mine to singlecatlady!
Posted by Brighty on Jan 30, 2020 10:36 pm
And for you. You need support for yourself too and I'm going to give you a few suggestions. In this community we have many discussion groups where you can connect with others who are going through the same or similar situations to you. Under "Forums" We have a caregivers discussion, where caregivers give their coping tips. We also have a group called "Coping with a Parent's Diagnoses."
There is also an oncology social worker at just about every cancer center that you can talk to, who has experience in dealing with situations such a these. He or she will probably have many great suggestions for you in dealing with your situation.
We also have a number to call that may be better able to answer the questions that you have .
1888-939-3333. They are friendly and will talk to you as long as you need.
I would also like you to meet one of our members who may also be able to give you tips. she is caring for her dad who has stage 4 lung cancer. Cynthia Mac thank you.
I hope this helps ease some of the anxiety you are feeling. Just know you are not alone and you have the support of the community here. Thank you for reaching out, and let us know how you are doing when you get a chance.
Posted by Kims1961 on Jan 30, 2020 11:52 pm
I have had to have many "difficult" conversations in my life. Talking about cancer/prognosis/ wishes are among them. One thing that helped when my mother was diagnosed was to find a time that was conducive to having a caring conversation. I explained to my parents - that rather than "shielding " me from the truth - it was actually giving me the message that they don't think i can handle the truth ( sounds like a movie line - doesn't it!) When we were able to talk about very difficult decisions - like death/ terminal illness - I felt more prepared/in control/ able to handle what may soon lie ahead. Still not an easy conversation - but one that is worth having. I also explained that during these conversations - its ok - actually appropriate - if someone or all cry. Crying doesn't mean the talks should end but rather a release of emotion.
Not sure this is helpful but please let us know how you're doing. Do you have some good personal supports as well?
Posted by Harpohill on Mar 21, 2020 9:03 pm
My dad has just been diagnosed with Bile Duct cancer. He is 82 years young, very active and was very healthy his entire life up until 3 weeks ago when he though he just had the flu, but then he started turning yellow, so we knew something was going on with the liver. After a whirlwind of a week of tests, his diagnosis came back with cancer.
It't just me and my mom to help him really, and well she is not really able to process things well right now, and honestly, neither am I. Health issues are not new to my family, I was diagnosed with Lupus when I was 13, I am 38 now so we have been though hard times before. The thing that has us all, is that there is no history of cancer or really any major illness in his family tree. I am adopted so, I'm the exception!
Anyways, just looking for other people who are dealing with the diagnosis of a parent so maybe we can help each other out.
Posted by Lianne_adminCCS on Mar 25, 2020 5:48 pm
Thank you for sharing. You definitely posted in a great spot to find other members like you. If you scroll through the thread for earlier posts you will find plenty of people dealing with a parent's diagnosis. Both of my parents have had a cancer diagnosis. I lost my dad to it but my mom is going strong. I am also a cancer survivor so I understand this from both sides somewhat.
If you see a post that resonates with you and you want to respond to their post directly, you can type the @ sign then immediately start type their user name. A list of matching usernames will come up.Select the one you want from the list. If it worked, it will turn blue - like your name does in this post.
Let us know how we can help
Posted by jorola on Mar 26, 2020 6:58 pm
How have things been going these last few days for your dad and your family?
My dad has prostrate cancer. Luckily it is very slow growing and likely will not cause my dad many problems/complications. He is 70. My father is quite stubborn and will not let my mom or me in with him on any of his appointments with his doctor. He also treats me like i am still 7 years old and still in pig tails too (insert major eye roll). Love the man, but Lord love a duck! How's your dad about this kind of stuff? Is he open to your help?
If he is willing for you to attend appointments with him that is great! Two sets of ears are always better than one. Also if you go, take a note book. One, to have all your questions you want to ask the doctor written down so you don't forget them when it is time to ask them. Two, to take notes from the appointment so you can refer back to them any time you need to. I like the coil scribblers myself because you can't lose pages and you can fold them over easy. I learned this when my husband was undergoing treatment for lung cancer.
How's your mom? All this is so overwhelming for the brain to process and hard on the heart to process all the emotions. Does she have any friends she can talk to to distract her once and a while? Same for you? I know your love for your dad makes you want to be there every moment for him but in reality you need down time. I am sure your family has learned this while caring for you with any tough periods with your lupus.
Know you can turn to us to ask questions, vent, cry or look for that well needed distraction whenever you need to. This site is full of amazing information that you will find educational and helpful. Let me know if you need any help locating anything.
Looking forward to hearing from you,
Posted by Kittycuddled1112 on Jun 3, 2020 1:33 am
Posted by Brighty on Jun 3, 2020 8:53 am
Posted by Whitelilies on Jun 3, 2020 9:50 am
Welcome to our site....sorry for the reason.
Brighty Thank you for the tag.
Kudos to you, for simply reaching out.....to support you.....in order to best support your dad. This is a caring and wonderful place, where we ALL help one another.
I hope, that when I (briefly) share my journey, it brings you/your dad hope!
I TOO WAS 56, when diagnosed with Colon Cancer; stage 2/3. Complete shock.
I did not have chemo.....I did have radiation, a bag, and 2 surgeries. (Plus 2 Autistic sons!......)
Am Here! Made It Through! I TOO had dark days.....tears.....who wouldn't?
I ALSO have a dad, diagnosed with Colon Cancer....he is 88. He was diagnosed ALONG my "journey"......my oncologist PROMPTLY accepted him, as a patient; heart of gold.
I am in your shoes....I am in your dad's shoes.....
Please let me/us support you.....all emotions are good to get out....a tear....or ten.....a chuckle or two.....anger....WHY ME question...we all face it....
I hope your dad gets through chemo soon....and regains strength....take things one day at a time.
We are here......If you have any questions, or need a virtual hug; HERE WE ARE.
Posted by Kittycuddled1112 on Jun 3, 2020 12:46 pm
Thank you for the warm welcome. I am happy to be a part of this now. I have this constant feeling of being alone and sad, and now I have a place to express those feelings.
Thank you for sharing your story. It gives me hope to hear that other people have gone through this and are still okay. I am so glad that you and your dad are okay. I think this was such a shock to me because I have never had anyone close to or around me have cancer. It was something I never thought I would have to deal with, especially with the people closest to me. Maybe that is naive, but up until now I have lived a life of blissful ignorance. Now my life has been flipped upside down. I have always been an emotional person. More emotional than my mom and sister. When we learned about my dads cancer diagnosis, my mom and sister stayed positive and seemed okay (with a few cracks here and there). Me on the other hand broke down and cried daily for 3 weeks. Felt sad and unmotivated. Didn't want to leave my bed. After his surgery to remove the tumor, things were looking up and I was beginning to be more positive. Two weeks later he had an appt. with his oncologist and was told that the cancer was in his nodes and that he would need chemo. Since March, I have been on a rollercoaster of emotions that is different every day. I never really know what to expect.
His chemo goes as follows: 1 IV chemo, 2 weeks of chemo pills, 1 week break, repeat x4. From what I have read on here, things could be a lot worse. He has it good. But seeing him so sick even for this period of time feels impossible for me. I can't imagine what I would do if things were worse. He has a 30% chance of it coming back after this. Of course, the way my mind works is I go to the absolute worst case scenario. I saw him yesterday a couple hours after his IV chemo session and he looked so sick. He looked sad and couldn't talk properly. He said his whole body was crampy and tingly. It is so hard for me to see the person who has been my rock for my entire life so in pain.
Thank you for listening.
(P.S. how do you tag someone in here?)
Posted by Whitelilies on Jun 3, 2020 2:20 pm
how to tag??
hit the @ sign.......then type a few letters of person you wish to reach.....it will DROP DOWN with a few options....then you "hit" the one you wish......it turns blue.
We are ALL here to listen, guide, support, and help.....our journies are different.....our journies are the same......we learn and share with each other, and loved ones too.
Please.....keep sharing.....we are listening.
Posted by Brighty on Jun 3, 2020 2:24 pm
Posted by Cynthia Mac on Jun 4, 2020 8:47 am
From the sound of it, you aren’t your Dad’s primary caregiver, but it’s very clear that he’s a high priority in your life, nonetheless.
I became my Dad’s primary caregiver because my mom had passed away just 2-3 months before his diagnosis of lung cancer. Like you, I have a sister who is more stoic than me (and I’m pretty freakin’ stoic under normal circumstances). I remember her shooting me “a look” one day after one of Dad’s surgeon’s appointments when I started to well up. SHE didn’t know why I was welling up, and I hope the look I shot back at her was a warning not to start with me.
The day of Dad’s first chemo, I had to excuse myself from the room and “have a moment” somewhere else - I’m not good with needles, and there I was in a room full of people being connected to IVs. But I never had to do that again.
This cancer journey IS an emotional roller coaster. I’ve been on mine for 2 1/2 years now. I hit another dip yesterday, when dad was having a bad day and the doctors started to talk about releasing him from hospital (there’s more back story here - I’ll go there in a minute). I’ve found that my emotions tend to run concurrent with Dad’s success - when he’s doing well, I’m able to function well, when he’s doing badly, I crash and burn, or almost do. You might watch for that pattern in yourself.
I’ve found it helpful to take my “negative energy” and try and turn it into constructive endeavours. For example, yesterday after a 15 minute conversation with Dad where he was really confused and “distant,” I finally hemmed and hung the curtains I bought just before lockdown. Now, that stack of fabric on my dining room chair is up where it belongs, and I got lots of exercise getting up and down off the step ladder hanging a curtain rod and the panels. Today, I’ll be back in the gardens getting the last of my plants in the ground. Still, I’m finding mornings difficult: the desire to lay in bed and wallow when I first wake up is kind of attractive. But, that won’t solve anything. So, I give myself a few moments to adjust to yesterday’s outcomes, then try to focus on the day ahead and “prepare for the attack.” For you, I would try to think of ways you can spend time with your dad - Doing a jigsaw puzzle together, or playing cards over a video app, if you can’t see him. Look up a guided journal for grandparents (I think you’ll find them on a google search) and ask him the questions from it.
This brings me back to my backstory: A week ago, Dad had an “attack” of some sort, and he’s been in a fairly non-communicative state. We know now that it isn’t any further metastasis of his cancer, and that he hasn’t had a stroke, and part of my distress yesterday is from the knowledge that there is a problem with his heart (with his family history, that’s not surprising, the surprising thing is that it didn’t happen before age 80). But, my Dad is “fading in and out,” and after just a week, I really miss him.
I often say that the one gift cancer gives us is the opportunity to make memories, so I encourage you to go do exactly that.
As others have said, and as you’ve already discovered, you’ve found a place of support. Drop by any time.
Posted by JenG on Jun 4, 2020 10:56 am
And Kittycuddled1112 It's definitely a roller coaster! Just when you get used to the way things are going, something happens or changes and you have to start all over again.
It's important to remember that as individuals, we all will react in our own way to these roller coaster ups and downs. That's perfectly okay. It's not fun, it's not easy, but it is a part
of you and how you just are, and that's the okay part.
Take care of each other.
Search all discussions