My meltdown last night

[michellep]

It's been 8 months now and I think I've kept it "together" for the most part until last night. I try so hard to be patient with my husband knowing what he's dealing with, I really do. But it seems that the more time that passes the harder it is to please him with "anything". He's better since they stopped the prior chemo and doesn't have the nausea or fatigue anymore...that's good, right? He's on Tarceva now and the famous rash has started, but it doesn't seem to bother him. So, why am I getting so stressed out you ask? I haven't had more than 3-4 hours of sleep per day since this journey began. I'm TIRED...I need some sleep. I'm beginning to think that just the "idea" of me sleeping and not being on watch is what scares him. I don't know! I'm not the kind of person who can sleep during the day (he does) I never have been able to do that. So.....last night he was resting nicely and I started to get ready for bed. He sits up and says to me " I think it's going to be another one of those long nights because I won't be able to sleep". Suddenly I just started to cry and cry and cry. I was so tired! I asked him why couldn't he sleep and he just said because I'm worried about my heart rate (it's been a bit high....not dangerous at all). So, I explained to him that the constant worry is what's keeping it high and that if he would just relax he'd be fine and able to sleep. He actually wanted me to stay awake "again" just to watch. Now mind you, his hospital bed is flush with mine and I always wake up to check him but for some reason he just doesn't want me to sleep! I don't know what will happen if I just drop from sheer exhaustion. Who will take care of him? I can't seem to get him to understand that I also need rest. Maybe 5 hrs a day would be a treat? Sorry for going on and on...but as we all know sometimes just putting feelings on here helps a lot. Thanks.

[jstdzy]

I'm sorry Michelle! I think he is totally taking advantage of you. Did your ONC give you guys any Xanax or Ativan? Well slip him a couple before bedtime and YOU can get some sleep.

(((hugs)))

Dana

[Patti B]

(((Michlle))))

I agree with Dana. Or ask your doc if hes allowed any sleeping pills and get some for yourself, too. You have to do something to take care of yourself, too, because hubby probably won't change. I just read a thing today that said " You can't change a man unless hes in diapers" LOL!!!

Lack of sleep is terrible - I know this because I am having problems myself. Tried Ambien but that gave me some bad side effects. So I am back to Tylenol PM until I see doc tomorrow and ask for something stronger.

We should all start a middle of the night chat session, huh???

Hugs - Patti B.

[recce101]

Michelle, I think maybe you're being too "nice," too accommodating. My wife is a sweetheart, but anytime she gets the idea that I'm not pulling my share of the load with whatever capabilities I have at the moment, I hear about it, and fast. Those flashing eyes can bore right through my skull in no time flat, and that's not a pretty sight!

You might need to be a little creative to get the point over to him that you're not a tireless machine. Know what I mean?

Ned

[michellep]

Well, I'll try to reply through my tears here:

Dana: Yes, I called the doc today and requested xanex....for BOTH of us!

Patti: If the only way I can change my man is if he's in diapers...then I think I'll get some for him. I'm imaging this! And yes, a middle of the night chat works for me...if I can see straight!

Ned: Have your wife call me?

[Treebywater]

You have to take care of yourself in all of this too... I can just hear the exhaustion through the screen. I know he is scared. I know it's 'his disease' but YOU are going to end up with health issues if you don't get the rest you need, and then he WILL be up a creek.

I'm praying for you. I'm praying for rest for both of you. It's ok to have a talk and let him know what you need to.

[barbvh]

Michelle,

Glad that you called the doc for xanax. You need your sleep and your husband sounds pretty anxious by requesting you watch him. I have had a anxiety disorder for years and only once kept my husband up at night. When it got that bad, I called and got meds and therapy.

((Hugs))

BarbVH

[fillise]

Michelle,

Oh hon, at some point it doesn't matter what hubby wants because if you don't get some sleep then you won't be any good for him at all. Did your tears make any impression on him at all?

I hope the Xanax works--for one of you at least!

Susan

[Larry's Wife]

Oh, Michelle, my heart aches for you. I have been where you are -- and I had help!

I read somewhere (perhaps on this site?) that 40% of caregivers predecease the patient. At the time I read it (early on in our journey), I dismissed this statistic as totally ludicrous...and then I walked the walk.

Caregiving is the most rewarding, stress-filled, honorable, exhausting, loving job. And it can kill you if you let it.

Please, do what you have to do to take care of you. You will be no good to your husband if you fall ill because of exhaustion.

[Caren]

As much as I loved my dad and I wanted the absolute best for him there were always boundaries with his care. I realised early on in with him that if I gave him an inch he would run with a mile. This would be with anything from the simplest of tasks to the hardest and because of this I just let him know that I loved him and would do pretty much anything for him but it had to be within reason.

Michelle you can not sit awake every night and watch your husband and then carry on with your normal daily tasks, plus the additional care that you now give. It just is not possible and at some point (very soon from the sounds of it) you will run out of steam.

You need to let him know that you love him dearly but be firm with him, sweetie. Yes you might hurt his feelings a little but you know if you didn't do that now and then during this journey then it just wouldn't be 'normal' living.

You are only human, as is your husband and you, like everyone else in this world need a certain amount of down time. Take that down time, Michelle!!!

Big (((HUGS))) to you sweetie.

[jaminkw]

Michelle, my heart aches for you. I know that no one can be at their best or even moderately efficient without sleep. And your sleep deprivation has already gone on way too long. I agree that the first thing to be addressed could be his daytime naps (that you don't get). Hopefully the meds will help you both but I'd withhold his til bedtime. I also like the idea of just telling him you desparately need a good night's sleep and go somewhere else to sleep.

Like Ned's wife, my husband let's me know when he thinks I could be doing more. With him it's not a look, he just withholds some help and I get the message. Of course, he also is not as good as Ned's wife probably is at intuiting when I can do more LOL. It's tough figuring out what another can and cannot do so you need to turn the mirror back on yourself and start doing what you can and drawing the line at what you cannot.

Best to you dear. Hope this works out soon. Meltdowns take so much energy. I know. I occasionally have them.

Judy in Key West

[michellep]

Last night I gave him a xanex and waited. When it appeared that he was beginning to sleep I went into the room next to his instead of the same and laid down. I knew that if he saw me trying to sleep it would trigger something in his mind and he would keep me awake. I don't know why, but he does. I have a baby monitor and we also use two-way radios so he can always reach me. I actually slept for 5 hours straight! Probably doesn't sound like much to many but it was indeed a lot for me.

I don't know if I've ever told anyone here but I also have a disabled son who lives with us. He isn't "totally disabled" though he can do many things himself, but yes sometimes he needs my assistance.

I feel like all I'm doing is complaining....I don't mean to honestly. I'm just so darn scared and emotional plus the lack of sleep I have had is adding to everything.

This morning when hubby woke up he said he couldn't stand up that everything hurt. I have no clue why that would be. But in trying to help him stand to use the plastic urinal thing I hurt myself I think....oh dear. Hopefully it will work itself out.

Thanks to all of you for your kind words and advice. I appreciate all of you more than you will ever know my dear friends.

[jstdzy]

COMPLAINING? COMPLAINING? ARE YOU KIDDING ME?!! You are so sweet and thoughtful and caring and you ARE DOING THE WORK OF 2 ROUND THE CLOCK NURSES!!!!! I would hardly call what you ask or say "complaining". Hubby is probably stiff because he got a good nights sleep too! And no nap for him today either!!!! Run the vacume or something! Hang in there kiddo! Complaining indeed!

(((hugs)))

Dana

[Patti B]

I don't hear any complaining!!!! You need rest, too and I am so glad you got some. 5 hours of straight sleep sounds good to me (I am not sleeping well, either). I agree that he may be hurting because maybe hes a little groggy still from the Xanaz.

PLEASE, never feel like you are complaining here. We all get it.

Hugs - Patti B.

[Barb73]

Michele,

Maybe you think you are complaining, but all I hear is the frustration and long-bearing endurance that you are experiencing. Never feel hesitant about discussing these things. That is why we are here - always. It can be a normal part of caring for someone.

As to the 5 hours sleep - that's cool . I cannot get too much more than that at night, and for me, it helps a lot. When I do get more, I can feel the difference.

Every hour we get puts some energy back into play, Michele. It's money in the bank. I even cat-nap during the day inbetween chores. These old bones appreciate even 10 minutes here and there.

There's a woman who called me last evening. Her father has bone cancer. She shared her experiences with me, and I felt so much better about things.

Her extended family has always cared for their elder relatives when they had health issues. Her advantage, as she called it, was that there were always other people around to help.

You have two people for which you have concern (albeit, differently). That makes it so important that you get sleep.

Getting the words out onto type-written form can also be cathartic for us, Michele. We are all here and each of us is "going through something or other" at any given time. To say that we understand is putting it mildly.

As for being stiff in the morning, I will go along with all those who said it was the meds. I am sure, though, that the sleep he had was a blessing to him physically. It might be that he slept so soundly that he is not used to it.

Barbara

[Suzie Q]

My guess as to why he tries to keep you up at night is because he is scared, and if you are there monitoring him (awake), then nothing bad will happen. At least, this might be his line of thinking.

Ask him about it. Reassure him of the monitors and two-way radios again, and stress the need for you to sleep. Lack of sleep can cause psychosis, you know! I'm sure he does not want a psychotic wife taking care of him!

Get your rest, dear. And do not cave in to any guilt trip he may try to send you on.

Karen

[michellep]

"Suzie Q"] Lack of sleep can cause psychosis, you know! I'm sure he does not want a psychotic wife taking care of him!

Karen

I can't wait to run in there and say this to him! LOL Let's see how much sleep I get tonight! I'll keep ya posted

[Caren]

I'm so glad that you managed to get a few hours of completely uninterrupted sleep, that is great!!!

Lets hope that with the meds to help hubby sleep you will get at least 5 hours, possibly more, every night!!

[jaminkw]

Michelle, I agree with the others. Your sharings are not considered complaining. And you can be grateful for five hours sleep! My hope for you is that one day you get to experience 8 or 9 LOL. Hang in there girl. Turn some of that determination you showed with the insurance company and doctors to getting the rest you need to keep doing what you do.

Judy in Key West

[jean44]

Michelle,

Getting no sleep is not good however, I just wanted to let you know a couple of things I experienced while Thom was ill.

A few weeks before he passed away he woke me up a few times in the middle of the night just "to talk". I never minded because I was always afraid there may come a day when he wasn't around to talk to and it didn't happen everynight so I was getting sleep. (total different situation but still not how life used to be)

It also become a habit for him to come into whatever room I was in and interrupt whatever I was doing (cooking, laundry, cleaning) and ask me to come sit with him "to talk". So, it seemed like I always had unfinished things to do but, since losing him I treasure those times and wish he was still here to interrupt me.

Take care and sweet dreams.

Jean

[michellep]

Thank you for telling me about you and your husband Jean. It's odd in a way because just this morning when took my hubby his breakfast and started to walk out of the room....he asked me to stay. He said he felt lonely with me running around the house doing things and he was all by himself. I understand and am very glad that you told me your story....thanks dear!

(((HUGS))))