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I feel like I'm at zero (long vent)


babyspicy

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Hi everyone,

I would like to introduce myself, I am Julia (babyspicy) Aaron's (spicysashimi) wife. I've long been a lurker on this site, and feel like I know most of you already. I would like to thank all of you for the tremendous amount of love, support, and encouragement that we have both received from you for the past year and a half. I am here now to contribute to that love and support, and hope that I can get some much needed advice and perspective from all of you.

Aaron just finished two weeks of WBR, and he will continue to get Taxol on a weekly basis after a week break. Things have been really difficult lately. Aaron has been slowing down quite a bit, has fatigue, memory loss, et. I recently took a leave of absence from work so that I could be with him for all the appointments, and at home. In the last three weeks it has really become a full time job - I'm sure all of you know this very well. I feel totally drained emotionally and physically - like I'm at a zero. Yes I'm depressed, hurt, frustrated, lonely, and exhausted. I am alone here in the city with Aaron with the exception of a couple good friends that have really been there for us. Aaron's family is in New Jersey, and his Mom comes in every week to help out a bit - but I never feel like it's enough. Really I feel like I'm not getting the help I need at all. My family is all in Colorado, so my support system is 1600 miles away, and helping me every way that they can. I actually feel like my family has been more supportive that Aaron's even though they are so far away. Today, I brought up the possibility of getting some outside help, whether it be hospice, a nurse, whatever. Aaron got really upset about even mentioning the word hospice. I know that hospice does other things for families - it's not JUST an end of life support. Anyhow, it doesn't have to be hospice, I just feel like I need a break. When Aaron's mother heard about the hospice, she got me on the phone and yelled at me!?!! Saying that he wasn't ready for it, etc. etc. I tried to explain that I need help, and she responded with "How can I possibly help you more than I already am." and then went on to say that I never thank her or appreciate her for what she does for us. To make a long story short, Aaron's sister also called and implied that I was "manipulating" Aaron to think that they don't help enough. This is hurtful enough on it's own, but couple it with how I'm feeling emotionally and physically, I just didn't feel like I could deal with having these people over for Thanksgiving. I want to do what's best for Aaron of course, so I'm leaving it up to him.

I feel very hurt and betrayed. I feel like his family has no idea what I'm going through on a day to day basis. I'm not even sure how to approach this, but I feel like a punching bag for his family, and I don't think I deserve to be treated this way. I'm feeling so low, and I need to be strong for Aaron right now, but I'm finding it so hard. Any words of advice would be greatly appreciated.

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ok this is me and I tend to say it like it is and I come off kinda harsh sometimes so keep it that in mind as I say this because the written word is so blunt and without nuances of facial expression or body language.

Now use that fact to your advantage.

Be BLUNT! write mom and sis a nice BLUNT letter. tell them what you do everyday to help Aaron from the minute you get up to the minute you lay your head down on your pillow. Tell them what its like day to day because them coming in to "help" once a week for a couple of hours when Aaron is trying his best to put his best face forward isnt enough "support". They dont see how it really is because he is trying to be brave an strong and funny and whatever...

Tell them your feelings of being overwhelmed and scared. Explain that Aaron needs everyone to help him and his family now. that is what you are his family too!

If before you were married Aarons mom and sis were more involved with his care they need to be TOLD that just because he has a wife now that does not end their family obligations. If they will not fullfill their end of being part of the family then you will do everything necessary to care for Aaron YOUR way even if that means bringing in Hospice or in home care nurse. Because in the end YOU babyspicy will be making the real hard decisions NOT them... and if that needs to start NOW so YOU can feel better about things then you need to do it.

Like I said Blunt... kinda harsh...but it works one way or another. they are not seeing a problem you need to open their eyes. and if they start yelling at you, dont defend yourself ...HANGUP...soon they will get the message

Aaron has such a great spirit... strong, funny, positive.

I hope his fatigue and memory loss end soon!

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Julia,

Very pleased to "meet" you -- sorry it is under this amount of stress and in these circumstances. Bravo to kaneohegirl's statement. She's right, it all does come down to you making tough decisions.

Anyone who doesn't live 24/7 with a person fighting this disease really has no clue what is going on. I don't give a crap how "close" that person perceives the familial relationship to be or how often they "drop in" to visit, it doesn't mean squat if you are not in the trenches day after day. They don't "get it" even when they think they do. The minute by minute, hour by hour scares and fears of each day are grinding beyond belief. I have no advice on how to approach your in-laws, as I didn't have that problem. (Maybe you could send them my post!) I'm sorry, but I do understand how overwhelming this can be. It's a shame that you have this additional burden added to your load.

I don't believe hospice will come in while the patient is actively being treated. I was told that our hospital had a palliative care team that would work with us on an aggressive level while my husband continued treatment. This sounded like a dream to me at that point because I had promised my husband that we would keep hospice out of our home for as long as possible and I would handle things on my own. (Not too hard, he refused to ever stop taking treatment, so no hospice.) Suddenly, I was floundering, in way over my head, and having to get him to the hospital. This team was willing to start working with us while he was in the hospital and then continue when he went home. You might want to check with some local hospitals and see if they have this type of team.

Many warm hugs to you during this very difficult time. Sometimes it is very hard to balance their wishes with what you know to be best for their overall health.

Keep writing and reading. Wise people are here who may have more information for you. My best to Aaron.

Warm regards,

Welthy

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Julia I know how overwhelming this is and have been there before. How much help are your close friends willing to contribute and Aarons Friends willing to contribute? Sometimes the distance works against you but the closeness can work for you. You sound like you need a break, at least for a little bit during the day each day. Can you enlist friends to help in the home so as not too upset Aaron? and it would give him a chance to socialize daily wiht friends as well. This is a link I have that can help organize the Caregiving role and responsibilites, among several people and you might want to check it out and see if it can benefit you and Aaron as well. Click on the link to be redirected;

http://www.lotsahelpinghands.com/

I hope this helps somewhat. Just a thought for Ya to try and get some friendly help and not a complete stranger or Hospice and Aaron may be more open if friends can help out.

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Hi Julia,

It's nice to meet you. I'm glad you joined in here, because I think it will really help you not feel so "alone". (It's been a Godsend for me).

I think writing the letters is a good idea . You can write anything ~~ say anything you want, and then when you re-read them, you may decide to tear them up and never send them, but you'll feel better, regardless.

People don't understand. If they aren't watching their loved one struggle to fight this disease, 24 hours a day, they CAN'T understand. ( I didn't, until it happened to us).

There are Home Health agency's that can send in a CNA to help around the house, go grocery shopping, do some of the little things Aaron may need help with, and they don't have anything to do with Hospice. ( I used to be one, so I know they're available).

You may need a note from the doctor to get it at a discounted price, or if Aaron is on Disability, it might be free. The one I worked for, (and will be going BACK to work for when I finish school), is run thru the United Way.

It would be worth checking into. They will come and sit with Aaron if you need to go out for a few hours too, just to get a little break. They have male and female CNA's, so Aaron could choose who he would be more comfortable with.

I understand the Hospice issue.... I would NEVER mention that to Harry... Not at this point anyway.

Good luck to you, and welcome here.

Nova

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Julia,

Glad to see a post from you.

(already answered but lost my post

my fault)

So will make it short and to the point

this time.

People here and there helped and THINK

they did a lot more than what they really

did (Aaron's mother and sister..)

Take a good look at the post of Randy

the link to ''lotsahelpinghands'' it is

very good.

Now make a list of all the help you both

would need (don't let Aaron cross out to

many things) get his family and friends

and you side of helpers all together for

a little 'DO' and present tham with the

list for...meals...lift service for

treatments...shopping...cleaning up...

fun outings...(if they can't come have them

get the tickets for shows+++)...time to

spend with Aaron (good moral needed) while

you do what you need for yourself, don't be

shy you will need a lot and present it to

them all at the same time (little party)

and take down their promises, every one of

them........

There will be broken promises, and offers

that were not on the list made.

Keep note of them.

No grapevine while all are there, let them

comit themselves in front of witnesses.

If a person tries to get out of a promise

made ask right away'' What will you do instead?,

never let people get away without offering

something else.

It could work like a progress report,

no commuinication behind your back and

no family fighting for who did what,

when they did nothing.

Sound harsh, but sickness is harsh on both

of you........make them realize that Aaron

comes first and you need all they can offer

to give him the best care possible so he can

get better.

Lots of love

Jackie

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Julia I'm so sorry you are going through all of this. I am too and recently had Home Health services start helping. At first they were just coming to change her PICC dressing but just this week we have added more and I imagine we will be adding even more. They even helped my Mom with my Dad with things like bathing. I have learned first hand the patient (our loved one) will respond better to a stranger or "hired help" so to speak--when it's something she doesn't really want to do.

Best wishes to you...I know where you are. Stay strong!

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There's nothing like serious illness to turn people against each other..and I say that in the nicest way. :roll:

You've lots of great advice here already- but I agree 100% with Welthy

those who don't live with a person dealing with the day-to-day of this illness have NO CLUE.

Write the letter, talk it out, do whatever you need to do to feel heard. Ask specifically for certain things and tell those around you how exactly they can help more.

Good luck, I'm so sorry all this is happening to you.

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Julia - I don't have any other advise besides what has already been said. But I do want to say that while you may feel like you are at zero, I think you are a BIG HERO!!! The love and support you have given Aaron has been more beneficial than any medicine or other therapy he has received.

Hugs to you!

Karen

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Hi Julia and welcome. I am so sorry that you are dealing with such difficult people and attitudes at this time. You need help and support, not the load of crap they are dumping on you. You've had some great advice. I really like the idea of writing the letters. It's much easier to get your thoughts across on paper when you are dealing with people that think they are right and you are wrong. Please don't let them make you feel bad about yourself. You are doing a great job and they have no idea what is involved in yours and Aaron's daily life. Shelley

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Hi Julia,

I really liked Jackie's suggestion. Write down a schedule and put them on it!!! And please don't forget your needs. Be very up-front about the fact that you need to get away for an hour or two every week and ask who will cover you during that time. I think the more open you are with his family, the better you will all feel about the situation. Maybe start the conversation telling them that you appreciate their efforts and don't know what you would do without them & their time. And - they can't read your mind so probably don't know what you need. And Welthy is so right!!! One can't EVER imagine what it's like to be a caregiver 24/7.....and how it proves to be taxing on your mind, body & spirit. My Dad broke down and cried when I told him that I was staying to care for Mom. My Dad had been caring for Mom since her dx in May and although my siblings and I flew there as often as we could, it just wasn't the same as having 24/7 help. I was able to spend Mom's final 3 weeks with her and never left her side.....which allowed my Dad to get some much needed sleep & time for himself. And, since I have a medical background he was no longer stressed about her medical needs. Respite is so very important for the primary caregiver!!! I am praying for you and your family.

Hugs,

Donna

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Julia-

I am so glad you joined here. I can really relate to your problem because I also had in-laws that were in major denial about how sick my husband was. I didn't want their help I had excellent friends and my mother for that, but I would have liked their concern and understanding of the pressure and stress we were both under.

This is what I learned in the beginning of this journey-- we needed to be around positive people to fight this-- if someone was negative or causing undue stress, we stayed away or did not invite them over. One summer it meant telling his parents they could not come to our house for the summer from Florida like they usually did. I could not deal with them there and so I said no. It's ok not to spend Thanksgiving with the in-laws if it is going to be stressful in anyway. So-- you and Spicy come first and that is it.

This is hard-- it is real hard and the last thing you need is family problems. Get some help- have his doctor order home health care or home help and take a break.

I told my mother in law in person my feelings and it helped. You might be misunderstood in a letter-- but do what your heart tells you. I feel for you- I really do. Please let us know how it goes.

Rochelle

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((((((((((((((JULIA))))))))))))

Not only does Lung Cancer Suck, sometimes so do family! :roll:

You got a LOT of very good suggestions here. My suggestion is: You and Aaron sit down and make a list of things for people to help with, ASK family/friends if they would like to help out with any items on YOUR's and Aaron's list. ASK family/friends if you & Aaron will be able to count on them if they sign up for something on the list. Here's the hard part, if they DON'T want any part of the list ideas, then you have to let it go! Try not to assume people or family will help. It's very disappointing when family/friends don't and very hard on your emotions. It's really a good idea to NOT have many expectations at this time. Right about the time you "expect" someone to do something, they DON'T, and then you get knocked down again! :( Find someone who WILL help out on your's and Aaron's TERMS! You can't make people do what they won't do, all you can do is ask and move on.

It just sucks to get caught up in the tangled web of the "should-a, would-a, could-a's. Everyone's emotions are running very high right now.

You NEED to take time for yourself. Even if it means sitting in the bathtub for 2 hours with the door locked. Do something that brings you COMFORT at least ONCE A DAY for AT LEAST ONE HOUR a day! (more if you can do it)!

We're here 24/7. Take care my Dear. We're here for you.

Ry is right about being around POSITIVE PEOPLE!

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Julia,

First off welcome.

Second, if I've noticed anything about this disease (and maybe others) when you are the primary care giver and other people second guess you...forget them! You are clearly acting in the best interest of Aaron...and as long as your decisions are out of love (which no question they are) then you are doing the right thing.

Third, when the one you are caring for "battles back" you sometimes need to keep digging in...particularly if it is really a good thing for them. My first post here incidently was mom not wanting to give up her keys, so I know kinda what that is like...I know hospice can be viewed as a dirty word, and I am not saying move without him being on board, but making some calls and introducing yourself, taking a meeting with someone is something you could do...so when everyone agrees it is a good thing to include others in the support system, that stuff can happen faster.

Fourth, you shouldn't have to take abuse for trying to do the right thing, but one of the things that kept me grounded in the middle of fighting for mom was looking at things from the other party. I battled with my grandmother (mom's mom) over certain things...so I know dealing with that emotional party can be difficult.

Good luck Julia, post whenever you need, a lot of support will be found here.

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Hi Julia,

I wish I saw your post sooner -- not that I have any great words of wisdom, but just to offer my support before the Thanksgiving holiday.

First off, I just want to say that I KNOW you are an amazing woman already (before "meeting" you here). I know that because of what Aaron has written about you and your relationship. There are always those people who touch your heart, and Aaron is one of those people to me (and was to my husband, Bill). Aaron and Bill were different ages, but in many ways of the same mind.

I can understand being on your own too. I dealt with most everything on my own as well, up until Bill's last few weeks when his family came. Mostly because his family lives out of the country, and because Bill didn't really want anyone helping in any intimate way, to be honest. I was the one he trusted and felt comfortable with. He was happy having other people play supporting roles (so long as they let him help back in whatever way he could).

There were times I felt completely overwhelmed with it all, emotionally, physically, spiritually, and every other way. Based on some of Aaron's posts, I have a feeling you are the one he puts his trust in above anyone else. That's a huge privilege, and frightening as well. If you're anything like me, you might feel inadequate to handle it all. Please realize that most of us feel that way.

As far as advice, I think you've gotten some great practical advice. If his family is close and you need more from them, definitely ask for what you need in no uncertain terms.

Also, I think that Aaron is being treated at a major hospital. I think they would have some type of palliative care options that you could discuss. Perhaps there is a nurse in his doctor's office that would take some time to talk to you about what options you might have.

If you ever need to "talk," please PM me anytime.

Thinking of you and keeping you and Aaron in my prayers,

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Julia,

I've not go t anything to add to the advice you've gotten here except to offer a ((((hug)))) and a welcome. I've been very inspired by Aaron's determination (and I can understand that he fought you on the hospice). Have you checked into home health care that is not hospice? Even if it were someone to come by a couple of times a week to give you some help and some respite.

Stay in touch and let us know how you both are doing,

Susan

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Thank you so much for all of your incredible advice. I appreciate each and every one of you more than you will know. I apologize for not responding sooner, my parents bought me a plane ticket home to Colorado at the last minute, for some much needed family time. It was really hard for me to leave Aaron for a few days, but I think it was good for both of us. I feel refreshed and ready to jump back in to caregiver mode.

We ended up having Thanksgiving at our house with some good friends. It was really low key, fun, and relaxing. It was a very positive environment for both of us to be in. The following Sunday was Aaron's 29th birthday, and we had a surprise party for him. I got all of our friends together with balloons and 29 cupcakes. He was SO surprised and so happy.

As far as his family goes, I had a long talk with his sister about all of our issues, and agreed to resolve everything for Aaron's sake. His mother has been another issue, we haven't actually talked to each other about the argument we had, but we have been very nice to each other at all of the treatments. I think we can just move past it so that Aaron doesn't have to be around any negative energy. I think his Mom got a really good taste of hat it's like to be a 27/7 caregiver when he stayed with her while I was away. I hope now that she can understand my position a bit more. I have been better about asking for help, and many of Aaron friends have offered to use their vacation time to spend the day with him if I need a break. I think writing out a schedule is a great idea, so far it's helped quite a bit.

The little break I had in Colorado really did wonders for my psyche. As caregivers we really need a few days or even a few hours to ourselves to refuel. I keep thinking of this journey as a marathon, we can't burn out too early or we won't have the energy to be strong in the end.

Aaron had treatment yesterday. He's still on Taxol, but his neuropathy is so bad they are giving him next week off. He is scheduled for a PET and MRI next week so we can determine if the Taxol is working, and what the next step might be. Please keep us in your thoughts and prayers next Wednesday.

Thank you again to all of you. I don't know what I would do with out you.

Love,

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Sounds like things have gotten a little better on the in-law front, and I'm glad to hear that. Everyone realizes things in their own time, unfortunately, it usually takes a blow-up to get it to work. Hope things continue to go well for you and Aaron.

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"babyspicy" ...His mother has been another issue, we haven't actually talked to each other about the argument we had, but we have been very nice to each other at all of the treatments. I think we can just move past it so that Aaron doesn't have to be around any negative energy. I think his Mom got a really good taste of what it's like to be a 27/7 caregiver when he stayed with her while I was away. I hope now that she can understand my position a bit more.

I hope your relationship with Aaron's mom continues to strengthen. What you both do and say from this point forward is the key, and there may be no benefit in discussing the argument. If she brings it up on her own, fine, but if not, you might want to just let it go. Some people, some very fine people, have great difficulty actually apologizing and saying "I'm sorry, I was wrong" about something they've come to realize was wrong and hurtful. Instead, they simply treat the disagreement and the events that led up to it as if they hadn't happened, and move ahead with a better understanding and respect for the other person's point of view. Maybe that describes Aaron's mom.

Best wishes and Aloha,

Ned

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