Fatigue as a family member

[Andrea]

I am just curious if any of the family members/caregivers experienced overwhelming fatigue at the time of diagnosis or crisis?

When my mom was diagnosed I could not speak with anyone without crying (even at work). Now I don't cry as much, but I am just sooooooooooo tired. I am 99% sure it is not physical as I have had so many medical tests (unrelated) recently. All I want to do and all I can do is sleep. I feel like my body has been run over by a truck.

I went to work Wed and Thurs. I came home, worked on the cookbook and slept. Today I was off and I ran some errands with my parents (my dad forgets he had surgrery. Apparently Buddy, the mini-poodle, carried in his own 10lb. bag of dog food), did laundry and have no energy to even make the bed

Just wanted to see if others experienced the same and/or make ofthers feel better if they do

I also strongly encourage our survivors to post how they feel in LC Survivors as they are the most important ones and I am merely a whiney daughter. I know that issue had been addressed in the LC Survivors forum I remember when people posted I passed it along to my mom and it helped her.

PS--I made my mom stop with me today to get lottery tickets. I figured what are the odds of two parents getting lung cancer and two recent miscarriages :)I can now never forget, positive pregnancy test the day of his biopsy, miscarriage day of PET scan. I am sure the odds are much higher than lotto, but hey, gotta have a dream

[angelofcharlie20]

Andrea,

I can totally feel the fatigue. I've been so physically and mentally exahusted lately. Last Friday I got a scary phone call from a social worker and then the doctor that my Father had while he was in the hospital. I left work and rushed to the hospital.

That weekend was one of the most tiring. I slept for approximately 7 hours that Friday night and still was exhausted for Saturday. Ditto for Sunday.

Best,

Shirley

[Treebywater]

Andrea--It's over a year now since I lost my Mom and I am STILL battling stress and fatigue that come from the hellish 18 or so months we lived through from Mom's diagnosis through husband's deployment. You've been through SO MUCH recently... on top of battling this with your Mom, all of the heartbreaks that you have had with your fertility treatments, and this with your Dad.... You've had a doozy of a time.

Be gentle with yourself. It is normal. It is hard. It sucks.

[Ry]

You know that fatigue and wanting to sleep are signs of depression. It may be that-- you've certainly been through a lot lately. But, to answer your question...yes I remember the fatigue in the beginning. I was so dead tired and I think a lot was stress, and a lot was trying to do everything and not asking for help. Once he got through radiation and chemo and we adjusted things got better. I remember telling someone I hadn't been that tired since I had a newborn in the house.

[Don Wood]

Fatigue moved in as soon as the diagnosis was known. Caregiving = stress = fatigue. I knew I had to take care of myself as well as Lucie, so I found time to exercise, tried to eat right, talked with people supportive -- anything to relief my own stress. Sorry you have to go through so much. Don

[gail]

Of course you are totally drained. You HAVE been hit by a truck, and it is a big one.

My first thought, and my favorite:

get a facial or a massage

Seriously

I just got a massage 2 weeks ago--every cell in my body was screaming with fatigue and pain ((School had started and I had to work )[/i] I really, really really felt the stress leave my body.

And look where you can cut back in those jobs that are not fun but take time--cleaning lady? precooked meals? dry cleaning?

I have learned in my journey to cut back in my[/b]brain. does it have to be done today? If it is in the next week or next month category it gets shelved.

And you are already doing the most important thing--you are talking and sharing your feelings.

hugs

gail

[ztweb]

Andrea,

I absolutely DO remember this. I remember coming home for the first time, and sleeping for two days. My mother in law was here, taking care of the kids, and I just slept all day. It was almost as if adrenalin or something else was getting me through test after test, and appointment after appointment, and once I returned to MY normal, I was completely done.

It gets better. Blessings to you Andrea, and by the way, I will have the collage to you today!

Jen

[teresag]

Andrea, So many wise words above. You are doing more than you even realize, I'll bet. Combine the constant go,go,go with the emotional distress you have experienced recently and you have a "recipe" (pun intended) for exhaustion.

Talk about it with us, with your loved ones, but also do something for yourself, as said above. I think every caregiver should know that caring for yourself IS caring for your loved one(s) with cancer.

With care, Teresa

[Linda661]

Yes, fatigue was a huge factor throughout initial dx and crises. As a caregiver, your body is "on alert" in the stress response constantly. It's a biological survival response that tax the adrenals big-time -- those adrenals are meant to keep you pumped and a super-doer for brief periods of time (then the body gets to settle down after it is "out of danger") only, not chronically. When your body never gets to relax (it this case, because you keep worrying, fretting, and dealing with problems that are not in your control -- so the body believes it's got to "fight or flee" all the time), it just plain wears down and makes you so tired that you have to sleep so it can recover as best as it can. The amount of sleep you need depends on how worn down you are.

If you think of what happens when you sleep, especially deep, dreamless sleep, your thinking is shut off -- basically your body cuts you off from influencing it so it can heal itself (it gets YOU out of the way so it can rejuvenate for another day with you!!!!)

It is very important for caregivers to get enough rest and mental downtime from this dx. In my experience, a few hours, even a few days, away here and there isn't enough. It's highly individual -- unfortunately I didn't find a system willing to acknowledge that and it put me in a very real position of having to consider walking away from everything for my own well-being (but it never had to come to that). It is well-known that caregivers often can become very ill on their own and even predecease the patient because of this, yet there isn't any real substantive support for the caregiver and the medical system is moving more and more toward requiring (not by choice) family caregivers to take on this challenge.

This is also true for patients, by the way -- the body can't flee from itself when it's in trouble and no one wants it fighting itself. To fight itself is to depress the immune system and that was probably already a factor in the dx getting in the picture in the first place. That's a whole 'nother story there because what I'm driving at with stress goes to what was there even before dx.

The best things I ever found for this kind of stress were (and are) plenty of rest, meditation (get that head on something I want to think about, not what I have to deal with at the moment), pleasant things around me (to remind me that life really is full of lovely things no matter what it seems like otherwise), and regular massage.

Linda

[tnmynatt]

Andrea,

I understand. I still have a lot of fatigue...I'm still trying to catch up on a lot of things that I let go for over two years. My current mission is getting my income tax together from last year. What a nightmare!!

You've gotten some good advice. But, it is hard to do things for yourself when there are loved ones around you that are in need. TRY to take care of yourself. Take care.

[Maryanne]

Andrea,

I hope you were able to get rest and you are feeling better. Besides your dad you went through so much with you own body. You did not give youself time to rest and heal when all he*l broke loose with you dad.

Just going to the hosptial takes its toll there also. I remember when my mom as in the hosptial, I was so fatigued, it was frightening.

So what you are going through is normal as you did not even have time to think straight.

But like I mentioned at first I hope you were able to get some well needed rest.

Thinking of you honey and sending you meditation vibes for strength.

Maryanne

[dchurchi]

Andrea,

it is amazing what caretakers can go through, many times we are considered the

forgotten patient. Since Alan's DX some 20 months ago I have taken on pretty much everything.

However, I am the opposite, I can not sleep at all. Once my head hits the pillow every worry,

financial matter, Alan's heath, take care of the house just fills my head. If it were not

for ambien, I probably would never have a

decent nights sleep. Please do not be so hard on yourself. we are all trying to just survive

this ongoing nightmare and you're dealing with it two fold.

[lennonsgirl]

i'm exhausted, too, and my mom and i have only been dealing with this for a short time (about a month). i have a full-time job and go to school part-time and i'm trying to take care of her. and it's not just the physical tiredness; i'm mentally and emotionally tired, as well. there's only so much i can do for my mom and that's what bothers me the most. i did not wake up until 6:00 p.m. today! i just could not get up. i have started listening to meditation segments on my ipod, reading (which i already loved to do) and knit (besides me schoolwork). anything that will help me to not focus on her illness, keeping track of appts, questions, money, etc. plus, you've had your own body, emotional issues to deal with on top of all this. take time for yourself. it may sound selfish but it's the only way we can help our loved ones get through this.

[Andrea]

Thanks so much everyone for once again making me feel better.

My dad is worried about me and my mom, I know it. He says NOT to worry about him. Ha My hair is starting to fall out even (I have had that before with stress).

What I did today will sound strange, especially since it is the Jewish high holidays. My dad wanted me OUT today for a bit and said I can stay in bed and sleep tomorrow. So Brian and I renewed our Disneyland passes and spent 4 hours there I was really fighting just walking, but I did it. Got a little tearful on It's A Small World. I started singing quietly "It's A Cancer World"

Now it is 5:30 my time, I will eat a yummy dinner, take a bath, and relax.

You all mean so much to me, I cannot even tell you.

[Don Wood]

Happy New Year, Andrea!

[ErinC1973]

Andrea,

I have to be honest; I don't have the answer. I mean, I guess we get through it because there really is no other alternative. My husband got word he was getting laid off the day before my mom died. On the six month anniversary of her death, he got his 45-day notice. His last day of work is September 29th, which is my mom's birthday. I swear, he has to leave this job just to stop these reminders.

I found out I was pregnant last year while my mom was still doing well, but I just kept thinking, "it's not the right time, she needs me." And I knew I'd have bedrest, so how could I drive my mom 80 miles to her appointments when I was in the hospital? It was a horrible time, honestly, I couldn't care for her, I had to be in bed 23 hours a day at home, two flights up from my mom. Just before Christmas, she fell and broke her knee and arm coming in the door from chemo, and all I could do was watch the ambulance take her away from my bedroom window. She never did come home.

I was physically ill, not coping well, having panic attacks, and just not dealing when she fell. My husband came flying up the stairs and said, "Your mom just fell, I called 911." And I thought to myself, "well, it's all over." I swear, I knew things were just going to get worse from then on, because she had just found out there was 30% growth, and she could not have a positive attitude in the hospital away from all of us. I blame myself for it all falling apart. When things get really tough, I tend to just sit, frozen in fear. I just don't know how anyone is expected to work through all of this. When I was doing IVF, I wound up quitting my full time job because the process just consumed me. Back then, my dad was also declining rapidly from lung cancer and I had two miscarriages back to back. I was trying so hard to get pregnant, I really thought it would give him a reason to FIGHT and to LIVE. And I wouldn't have guessed (but confidentially, yes, I feared) that my mom would be diagnosed with lung cancer, same stage, five years later.

I had the support of a LC group on the web (now long gone, but it's how I met Fay A.) back when my dad was diagnosed. This time around, I posted a few times on here, and so did my mom, but I didn't really become active until she passed away. I'm having a really hard time dealing with my grief/guilt/sorrow/confusion and I swear I have never met a more understanding and empathetic bunch as the people here. This place has done me more good than any therapy session ever did back when my dad was sick. What I have realized since my mom's been gone, is that there are people who have had some really profound things to say to me regarding grief, and if I take all of these little bits and pieces of what each of them says and put it all together, it becomes part of a bigger picture which helps me understand things a little bit better. I know I always felt really good when I took my mom up to her appointments. She was admitted for three days for her chemo and she and I would crank up the radio in her car (a little red sports car!) or just talk on the way there and back. Thinking about it now, it hits me yet again that I can't believe she's gone, she was so young and vibrant.

Whew. Anyway, I guess what I'm saying is that even though I know you need to take time for yourself and your own family, and I knew this going through LC with both my parents, I still was nervous when I wasn't around them, and felt much better, much more like I was doing something, when I was with THEM. I suppose I probably kind of smothered them. But now I never regret one moment I spent with them; rather, I wish I had spent MORE time with them. When you really think about it, does anyone ever say in the end they spent TOO MUCH time with their loved one?

I know it's hard. It's probably one of the hardest things you'll have to face in your life. Just do what makes you feel good. We have all been there, or are doing it right now. I do believe I am in a bit of a depression, because I am SO tired all the time. I swear I keep saying out loud, "I had a baby???" It was all a fog. Here I begged my perinatologist to let me go one more week after my mom died before doing my c-secion. Now I realize, silly me, it didn't make one bit of difference. What matters is that my mom never got to see her grandbaby. My wish for you is that both your parents will get to enjoy many healthy years with your babies. Because this alternative sure is almost unbearable.

[gail p-m]

Andrea,

I left my home to care for my father on June 22. Then my Dad passsed 6 weeks later on Aug. 1st. I also had to put down my dog (whom I very dearly loved) just 2 weeks ago. I have been totally exhausted and I mean that, more tired than I've been in my whole life. I often have difficulty sleeping and on the few occasions where I do get a good night's sleep, I'm still very tired. I keep thinking I should go back to my fitness center to try to get into shape again and have more energy but I'm simply too tired to do so.

Take care of yourself Andrea. You have a lot on your plate right now and need any and all "treats' you can give yourself.

gail p-m

[angelofcharlie20]

Hi All,

I just debated on whether or not I should post a secondary response to this thread so here goes nothing.....

I know that we are all tired, both the caregivers and the caregetters and I have heard a few people mention depression. This may not apply to all, but from what I've seen and learned as a therapist a touch of depression is considered "ok" when it is situational.

At work, when I see a client that is upset after receiving some bad news I reassure them that it is ok not to feel that great and that I'd be more concerned if they simply did not feel. I've also had a client that told me that he wanted his medications increased so that he could not feel and that he does not like feelings and the affects of it. Feelings are hard - they were when your feelings were hurt when you were the last to be picked for kickball - and they will remain a challenge for most of us even in adulthood.

The aftermath of receiving such horrific news warrants a strong reaction. Bereavement within itself is a very personal process and people work through it at different rates. Doctors should be informed when there is a change in affect, but be wary of those that are quick to push an antidepressant before discussing going to talk to someone.

Please remember that we are all human and that feelings are very normal and expected.

Sorry for the psychobabble,

Shirley

[BeckyCW]

Andrea, Happy New Year! Just chiming in to say I'm STILL exhausted and starting to wonder if it's a permanent condition. Just kidding... sort-of. Really, I do remember being completely, utterly, amazingly TIRED after David's diagnosis sunk in. Now my mom is fighting colon cancer (stage 2) and that same kind of "tired" is back -- only since her prognosis is a lot more hopeful, I'm "less tired" than I was at this point with David. I wonder if the "fight or flight" thing is what makes us tired?

Hang in there,

BeckyCW

[melindasue37]

Hi Andrea,

I have been feeling this extreme fatigue lately too. In fact, after my sons football game yesterday I came home and slept for hours. I have never been one to take a nap, but I just wanted to sleep. At work, I find myself falling asleep at my computer. I have been going to sleep so early lately, sometimes as early as 8 pm. I'm pretty confident that this is just from the stress of losing my Mom. The roller coaster continues. I don't think things will ever be "normal" again.

You aren't whining, Andrea. I know exactly how you feel.

Hang in there!!!

Warm Hugs,

Melinda

[Andrea]

Suck a duck, I actually hate to say that I don't feel as alone b/c I hate that you all are feeling the same things!!

I really appreciate all of your posts. I am trying my best for my parents. I still just want to sleep all the time but managed to do 20 minutes on the exercise bike for my dad each day.

I have a tendency towards chronic fatigue syndrome/fibromyalgia so I am trying to ward it off. There is debate as to whether it is real and as to whether I had it or if I just got a bit burnt out b/c I was too competitive in school.

Thanks again!

[adela]

Caregiving was hard. 7 months later,I am very tired, I don't sleep well. I cry every night, the list could go on and on. It was and is a very stressful time.

Trying to take time for yourself is hard and you just want to be with them. Because you know what the future has in store for you.

Adela

[nikkala]

PLEASE Andrea just remember you MUST put yourself first and take good care of yourself and your needs. It may sound selfish but remember you need to be well to be of any use to anyone else. You have been thru sooo much lately and have barely even had time to process any of it. Please just take good care Andrea, We care. Keeping you and your family firmly in prayer.