So tired......

[Lara239]

Okay, I REALLY hate to complain but this board has become everything to me lately as i feel that you guys are my new found friends in this horrible journey. I am a caregiver to my husband (which I LOVE to take care of him) but I am so freaking tired the last few weeks. It has been exactly a month from discovery (during colonscopy) to diagnosis (surgery and stage 3) and I am wiped out. His parents came in town (they are from another country ) and have been here 2 1/2 weeks and I think that is what is causing me to be so tired. Is it normal, as a caregiver...to get this worn down? I run around all day waiting on my hubby because I want him to have the best of care. But I also thought his parents would help me a little but they do nothing. They are actually creating more work for me because they cannot seem to operate even the coffee machine without some sort of problem. I wake up in the morning and before I even reach the kitchen i am bombarded by questions about how this works and that. Why can't they just figure it out? I am even doing everyone's dishes every night and everyone's laundry. They dont even help me prepare his meals. I have tried to tell them nicely to help me more but they just do not get it obviously. I am worried I am going to have a nervous breakdown soon because I am so tired. I am on zoloft but feel like my anxiety is now getting the best of me. I dont want to start any drama because I want my husband to have a positive environment for recovery and it makes him happy that they are here so I shut my mouth about my complaints. But now I am starting to not feel so good. My back hurt so bad today (from cleaning up after everyone) that I finally just left the house...drove to my dad's house and hung out there for 2 hours because I just needed some peace and quiet.
I want to take the BEST care of my hubby but I am tempted play sick all day tomorrow and just lay in bed. That is so horrible and I feel guilty that i feel this way. Some people are good in crisis mode, and some people are not. They are not. I feel like Scarlett Ohara right now when she comes home from the war and finds her house in shambles and the servants and everyone are following her around saying "Miss Scarlet, what do we do about this and that?".
Okay, I should not complain but I had to vent. I am exhausted.

[Surroundedbylove]

Caregivers really need help and we all understand. Each family is different - although they don't get it, perhaps we all can toss out some ideas.

Here are a couple from me:

1. Come straight out and tell them bluntly - this sucks and hubby is focusing on rest and recuperation but that means I am doing double duty at home. I love having you here and so does he but we both need help. I've learned from others that caregivers don't help the patient when caregivers are exhausted. Hubby and I need help . Can the two of you be in charge of laundry and dishes?

2. Give them specific tasks for each day they are there and if they ask things like "where does this go" (if they are putting away dishes) just say - "it doesn't matter - anywhere you think works" so that they take ownership.

3. If you can give them a task like grocery shopping with a detailed list, then it gets them out of the house.

4. Yardwork - "hubby is recuperating and he normally does xyz. We need help with that - could you please do that?" Again, it gets them out of the house.

[Lara239]

Caregivers really need help and we all understand. Each family is different - although they don't get it, perhaps we all can toss out some ideas.

Here are a couple from me:

1. Come straight out and tell them bluntly - this sucks and hubby is focusing on rest and recuperation but that means I am doing double duty at home. I love having you here and so does he but we both need help. I've learned from others that caregivers don't help the patient when caregivers are exhausted. Hubby and I need help . Can the two of you be in charge of laundry and dishes?

2. Give them specific tasks for each day they are there and if they ask things like "where does this go" (if they are putting away dishes) just say - "it doesn't matter - anywhere you think works" so that they take ownership.

3. If you can give them a task like grocery shopping with a detailed list, then it gets them out of the house.

4. Yardwork - "hubby is recuperating and he normally does xyz. We need help with that - could you please do that?" Again, it gets them out of the house.

I have tried all those things. They actually argue with me about what should be feeding him even though they don't help prepare meals or clean up.I just want them to go home.

[Helen]

Hi~I think you should allow yourself to play sick for a day.Only if you can do it and really relax,what I mean is not worry your day away about how things are being handled.Let your in-laws handle the day as it unfolds,unless of course your husband needs you.Caretakers do get tired I do at times.Pam my partner of nearly 18 years was Dx last nov,and I remember just how hard it was in the beggining.Not to say that it isnt hard at times now it is.It took me a long time to allow myself to sit in our hot tub,it is something I find very relaxing.It was also something Pam and I did daily before cancer for many years,Pam can not soak as she has fistulas and an ostomy,the ostomy can get wet but the drs prefer her fistulas are not submerged in water.What I am trying to say is at some point you are going to have to find an outlet for yourself,even if its just spending a little time having coffee or reading or whatever it is you enjoy doing and that will recharge you.

Helen

[Lara239]

Hey. I am thinking of just playing sick tomorrow. I thought I would just wake up and pretend my back is so sore that I cannot move. That is not far from the truth but I do not like lying . They are staying one more week and if I could just have a day to rest I think I will be okay. Unfortunately theY r the typesnofnpeople who come in my room in the morning and try to wake me up. I think I can just act like I am in super pain tomorrow and just cannot get up. I know that is so horrible though!

[Y2012]

If they can not provide help, send them home. You have enough to deal with at this early stage, no need to add two more people to your already heavy load. Talk to your hubby and maybe have them come back when things are more stablished.

You as a caretaker is as critical as the patient. If you are stressed out or if you get sick, nobody wins.

[hannahw]

If you can't complain here, where can you complain? Better to let it out here than to blow up at home. Here, you don't need to take it back. There, you probably can't take it back.

Over the course of being a caregiver, you have to make sure to take care of yourself. You can't take care of your husband if you're a mess. It's not selfish to need some sleep, peace and quiet, laughs, etc. It's just part of maintaining a healthy body. We all need it. We all deserve it. But, to be honest, in your case with your in-laws leaving soon, I'd suggest just sucking it up until they leave. It's not optimal, but it may be the best option you've got right now.

If you're on the verge of a breakdown and sucking it up won't cut it, don't lie, that won't make you feel any better. Be honest (but diplomatic). You're not hurting anyone by telling them "I need a break" (unless you add "from you" ) And if it means you have to leave the house for the whole day to do something to take care of yourself, so be it. Don't short change yourself. One thing I've learned, people will, without realizing it, take as much as you give. If you stop giving, they'll figure out a way to manage. If your in-laws need you to do the coffee when you're there, they'll probably figure it out when you're not there. Or they don't need the coffee that badly. Or there's a coffee shop somewhere nearby. Take yourself out of the equation and let them solve the problem.

Long term, it's going to take some time to find your new normal. Everyone has an adjustment period where everything feels extreme and terrible. It's scary, it's unfamiliar, you don't have a system worked out. It makes responding to even the simplest things more stressful. The best advise I can offer is just keep going. You'll get there. You'll find the new normal and things will get easier. Go easy on yourself. It's normal to feel anxious and stressed and tired and sad and angry and everything else. Cancer sucks! One thing that I found encouraging was the learning process. I realized that every day I would get more knowledgeable and that knowledge would make it easier to deal with whatever came up. In terms of the skills you have to be a caregiver, you're always going to be moving forward, getting better, both at taking care of your husband and yourself.

[jgall]

Being a caregiver is probably one of the most demanding things you will face. I've learned this rule...patient needs come first, caregivers' second! You are no good to him if you don't listen to your body. Yes, one of his needs is to have his parents around, but that's not helping you.

Can you talk to him and tell him what you need? Maybe he can ask them to help. If not, I vote for playing sick. You have to do what you have to do to get through this, even if that means making up a story. You must take care of yourself and this is a complex situation. You've tried the truth and it has fallen on deaf ears. Now go lie your butt off and get some rest. They will be gone soon and you can find your new normal then. This is NOT it.

Be well,
Julia

[Bev G]

Being a caregiver is probably one of the most demanding things you will face. I've learned this rule...patient needs come first, caregivers' second! You are no good to him if you don't listen to your body. Yes, one of his needs is to have his parents around, but that's not helping you.

Can you talk to him and tell him what you need? Maybe he can ask them to help. If not, I vote for playing sick. You have to do what you have to do to get through this, even if that means making up a story. You must take care of yourself and this is a complex situation. You've tried the truth and it has fallen on deaf ears. Now go lie your butt off and get some rest. They will be gone soon and you can find your new normal then. This is NOT it.

Be well,
Julia

Ditto, Julia! Well, said. Lara, it is so, so hard to really incorporate the concept, "It's a marathon, not a sprint!". It really was for me, too, even though I already knew it very well. I have stage IV colon cancer, then my husband was diagnosed with stage IV lymphoma in January of this year, one month after he had minor surgery where his "recovery" had been an unmitigated nightmare (frankly because he acted like a two year old---of course we had no idea at the time he was very sick from the undiagnosed lymphoma, so yes, I felt sufficiently guilty )

My point is, you really can only do what you can do. I tried to do to much during my husband's chemo, pretending I am the energizer bunny, and I'm simply not. It simply doesn't matter what we want to do sometimes, it only matters what we can do. Be kind to yourself. You have more than ample evidence that your in-laws are being selfish and unkind, even if that is not their intent. Advocate for yourself: take a day off and get some rest!

Very best wishes,

Bev

[michelle c]

I think that you should play sick tomorrow with a sore back....although I think that you really do need a rest so it is justified I'm sorry that your in-laws are not being hekpful when you need them to be. You have enough to worry about without the stress of more work to do. You should definitely ask them to help you with the dishes or folding or ironing the laundry. I think that they should be doing at least this without being asked but some people don't get it, unfortunately. Good luck with it all, hang in there, they will be gone soon!

Love and hugs,

Michelle xox

[lepperl]

Agree with everyone! You need to be healthy so you can help your husband. Play sick for a day that is a good idea! Don't feel one bit guilty! Look at it this way. You are playing sick so you can regroup and be a better care taker to your husband.

[MaryluvsMickey]

Some things just need to put on the back burner for awhile. Dishes and laundry are on the bottom on my to-do list when things are stressful. Get take out! Buy paper plates and plastic forks!! No dishes to wash. As for the laundry, post the directions for the machines in your laundry room and they will either do their own washing and folding, or turn their undies inside out. Shoot, my teenagers do their own laundry. Unless they are from some country where they are still pounding their clothes on a rock in a stream the theory behind a washing machine is pretty universal.

My new mantra has become: "will this matter in 6 months? or even in 6 weeks?" If the answer is no, I let it go. Nobody is going to come by to visit my husband and notice if there where dishes in the sink.

And I don't think you need to play sick. It's perfectly ok to say: "I'm taking a mental health day. Figure it out." You have to stay healthy both physically and mentally.

[Lara239]

Thanks everyone! Well, I am officially playing sick today but I am actually not lying! I was up all night with a painful back and stomach issues (my stomach gets upset easily when I am stressed) so I had little sleep. I woke up this morning, walked into the kitchen....got asked the usual 101 questions about how this and that works (this morning it was because they could not figure out how to turn the dishwasher back on after they opened it while it was running, and then some other questions about where the teapot was and stuff....I mean they have been here over 2 weeks now...WHY CANT THEY FIGURE THIS STUFF OUT?). I turned around, told them I was going back to bed and now i am in bed with a heating pad. I am hungry but will wait until they have their VERY long breakfast (they always sit at the breakfast table eating/drink tea each morning for over an hour) and then I will go in there and eat something. I am getting so resentful I just dont even want to see their faces! I feel so guilty about my feelings too!
I told my husband that they should all take a trip to the grocery today to get some things because I would like an hour or two to myself with quiet in the house. He is so sweet and understood (he thanks me daily for being so patient but he is not the type that will speak up to his parents and tell them to help more unfortunately). He is doing SO much better the last few days. He is already eating full meals (low residue but he is eating a lot) and taking walks and acting like his old self again.
I just hope they pay for their groceries this time. They have been here for two weeks and not helped me pay any food and they know my husband is on an upaid leave (he is the breadwinner) and we are getting ready to get a lot of huge medical bills soon. I told my husband that when they go to the grocery he has to make them pay for their own food. I just find it all so strange because they have always been so sweet and helpful in the past (we have been married for 8 years) but it is like they have totally frozen up in this crisis situation....like fainting goats or something, lol.
To make matters even worse, last week his father was lecturing me about what i needed to feed him(but of course not helping me prepare anything) and getting mad at me for making him smoothies...they thought he should just eat bread all day long. I called his surgeon's nurse and they said that bread has no nutritional value and that smoothies would be better...so I was right, ha! His mother just does nothing but stand around looking like a deer in the headlights all the time. She is a sweet woman but cannot seem to stand up to her own husband. His father even told me that I needed to see a therapist to manage my stress....I mean seriously? THEY ARE CAUSING ME STRESS!
Anyway, thanks for listening to my venting, it really helps a lot!

[sadysue]

Lara, please take some needed time out to relax, especially while the parents are here and can take the pressure off you a little. Let them do their thing in your house - they can be a big help if you let them - keep them busy with "stuff" that needs doing. Get out everyday and do something that relaxes you - go to a park, lay in the grass and read. Go shopping if you like that. Have lunch with a friend who makes you laugh. You need your strength for what you and hubby have ahead of you. Good luck!

[Lara239]

Lara, please take some needed time out to relax, especially while the parents are here and can take the pressure off you a little. Let them do their thing in your house - they can be a big help if you let them - keep them busy with "stuff" that needs doing. Get out everyday and do something that relaxes you - go to a park, lay in the grass and read. Go shopping if you like that. Have lunch with a friend who makes you laugh. You need your strength for what you and hubby have ahead of you. Good luck!

I completely agree with you everything you just said except the part about them being a big help if i let them. They have had plenty of chances to do this over the past two weeks...i have asked them repeatedly to help with things and they just stand around doing nothing. They will be here for just one more week....one day maybe I will laugh about this (not the cancer part but the inlaws being so unhelpful part)....I just have to hold out until then!