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Spouses and Caregivers The people who take care of the patient

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  #1  
Old Mon Sep 15, 2008, 07:06 PM
koahope koahope is offline
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Join Date: Sep 2008
Location: Middlebury, IN
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Spouse new to this forum

Hello everyone,
I'm Hope and I'm new here and wanted to talk with someone that is a Care Giver/Spouse to someone who is dealing with MDS. My husband was diagnosed last October (08-see signature) and lately I have been overwhelmed with everything and very concerned about his recovery.
I'm running our business (a seasonal campground) while trying to deal with his illness, my house seems to be falling apart, don't have time to go shopping or do much cleaning because I'm at work all the time (can't wait till Nov when the camp closes for the winter). Thankfully our son is here helping at the camp which realy took a load off my shoulders in April when Peter had his transplant! I certainly couldn't have done it all alone!
My question to other cargivers is, how do you do it all?! Work (for me is 12-16 hr days), housekeeping, shopping, and taking care of spouse?? My mom helped schedule guys form church to take Peter to his local weekly appointments which was HUGE for me, and I take him to Indy (3 1/2hrs away) every 3 weeks for his appointment at the BMT clinic.
Now he's dealing with a rash, low grade fevers, and grouchy moods (no cure for the moods I guess). I worry everyday about GvH, am tired of watching his HGB go down, tired of the transfusions, and feel hopeless and helpless because I just don't know what to do to help him. I am having moments where I just wish this whole thing would just 'go away' and things would go back to some sense of 'normal'!!! I'm so tired of hearing him say 'I'm sorry' everytime I yawn or say it's been a hard day on the campground, as if appologizing for something he can't control is actually going to help!
OK, I've vented some, if I write much more of a book no-one will want to read it let alone answer it.
signed 'tired in Indiana'
Hope
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Hope, wife of Peter - 35yr old that was diagnosed with MDS RAEB Oct 2007, underwent 2 rounds of Chemo in Jan 08, and 3rd round of Chemo with TBI in March 08 followed by Bone Marrow Transplant April 08.
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  #2  
Old Tue Sep 16, 2008, 09:24 AM
sandra sandra is offline
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Join Date: Mar 2007
Posts: 35
Hi Hope,

There is another guy (40 year old), who just had a transplant a year ago. His name is Mark Yates and coincidently, he lives in Indiana too. Your husband might want to read his caring bridge page, Mark has such a positive attitude about EVERYTHING!

http://www.caringbridge.org/visit/markjohnyates

If your husband was running the business with you before, maybe can can start to pitch in again, little things perhaps. I think at this point (6 mo after transplant) it is detrimental for your relationship to look at him only as a patient, or for him to consider himself only that.

Sandra
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  #3  
Old Wed Sep 17, 2008, 12:45 AM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,442
Hi, Hope.

I too tried to do "everything" until I realized that I couldn't keep it up. I had to let myself let some things go. If the house is getting messier and messier, at least it will still be there when you have time for it. Eat off paper plates and throw them out so you don't have dishes to wash.

I'm glad you have family around to help keep up. Just being there for each other helps too. Don't be shy about asking friends and neighbors for help with errands or transportation. They probably want to help but aren't sure how.

I guess we'd all be grouchy if we had to be a patient for months and months, unable to do what we usually do, undergoing a transplant and other treatments, and dealing with the latest after-effects. Neither of you likes the situation, but it should get better. In the meantime you just have to give everyone some slack, and some for yourself too.

You've been worrying about a lot of things. For some, like managing your schedule, you can do something about it. For some, like possible GvH in the future, you can't do very much, so worrying isn't helping. Peter has made it this far so I think you should be optimistic.

It seems counterintuitive, but when you can't find a spare second for weeks and weeks, it's time to force yourself to take time off. It can be short, but you need some time away from it all (with or without family members), to let your head stop spinning. A shopping trip, a movie, a long bath, a bike ride, anything to get away from it all just a bit. You deserve it, and you don't have to wait until November!

Everyone has his or her own approach to coping with the demands of caring for a spouse, but these are my thoughts. I hope they help. Good luck to you and Peter.
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  #4  
Old Wed Sep 17, 2008, 06:31 PM
koahope koahope is offline
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Join Date: Sep 2008
Location: Middlebury, IN
Posts: 2
Thanks neil and sandra,
Why do I feel so guilty if I take time for me????
I feel like I let Peter down, the staff down, my son down if I just want to disappear. Are these all normal caregiver feelings are am I just run down or whatever?
Anyway, the thing is there is no support group up here in northern indiana for caregivers to BMT patients. His transplant was in Indy (3hrs south) and their support groups are nearly impossible for me to get to.
I guess I just want some to relate to.
Hope
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Hope, wife of Peter - 35yr old that was diagnosed with MDS RAEB Oct 2007, underwent 2 rounds of Chemo in Jan 08, and 3rd round of Chemo with TBI in March 08 followed by Bone Marrow Transplant April 08.
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  #5  
Old Wed Sep 17, 2008, 08:18 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
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Hope,

It's common and perfectly normal to feel guilty for doing things for yourself instead of for everyone else. When you're tired and your spirits lag, it's probably even harder to avoid feeling bad about it. But I hope you'll be able to shrug it off and do what you need to do. The #1 priority is health, and that includes your husband's heath, your son's health, and your health too. When the relentless pace makes you moody or grumpy, you'll be less good at helping everyone else. That means you'll be helping your family by taking care of yourself. Why should you feel guilty about that?

Even under normal circumstance, moms often try to be supermoms, working while managing a family and home, which amounts to 2 full-time jobs. When they become full-time caregivers for an MDS patient, they have 3 full-time jobs. No wonder it seems impossible to keep up!

There are experts who help people improve their time management skills. I don't have a particular person or book or website to recommend (maybe other forum members do), but getting some tips about how to get the most done in the least time would be another way to cope with the extra pressure.

It's too bad you don't have a local support group. You might start a thread in the Your Local Area forum just in case someone else from Indiana speaks up. Have you contacted bmt infonet? They help connect people who have had transplants, or who are going to have one, with each other. In the meantime, I'm glad you found Marrowforums, since it can help make up for the lack of people to talk to in person. If it helps to have somebody to talk to online, we're here listening.
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  #6  
Old Thu Sep 18, 2008, 10:04 AM
ESeda ESeda is offline
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Join Date: May 2008
Location: Naples FL USA
Posts: 89
Hello Hope

Your husband is a lucky guy. And you, Supergirl, that's what you are. I wish I had your strength and health to do what you can do. If you need anything it's exceptance. Not of all the things going on around you, but in realizing you can't do it all. That's nothing to feel guilty of, or apoligize for. You could give lessons to other care givers on how to.

Best wishs for you and your family, and take a break....
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Eli, husband of Nellie (64), dx 3/08 MDS RAEB-1 w/abs, 2nd BMB 9/08 after 4 cyls blast dn to .5, Vidaza reduced 50% on 11/19 after sudden drop in CBC, 8th cycle completed 12/26/08. BMB 2/09 blast 17%. Seven day Induction Therapy completed 3/23/09, Started Salvage Therapy 5/5/09. Stopped 5/8/09.
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  #7  
Old Sun Sep 28, 2008, 07:37 AM
JulieC JulieC is offline
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Join Date: Sep 2008
Location: Virginia Beach, VA
Posts: 5
I am new to this forum and MDS. My husband was dx in July. He is opted to try Vidaza for now in hopes of having a BMT in 09. As I read your post of feeling overwhelmed, that is what I am afraid of too. We have 3 children how are in every possible activity around and then to have to travel 2-3 hours to where the BMT will take place. I am wondering how I am going to be able to do it all. I know I have time since we have to get to the BMT point. That is very frustrating too, the waiting for that. But just thinking about what is ahead is enough to make anyone feel very anxious. I wish you the best of luck with your husband and I am absorbing all the advice so I can tuck it away for later.

Julie
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