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Spouses and Caregivers The people who take care of the patient

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  #1  
Old Sat Jun 1, 2013, 10:56 PM
KathyM KathyM is offline
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Join Date: Mar 2013
Location: Philadelphia, PA
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Does Anyone Read This Section

I wasnt sure where to post this - and I see that there is not much activity here - I'm having a particulary tough night - and I guess I just want to vent.

A quick background - Dennis had a MUD on April 24th - he's doing quite well - however, he was re-admitted on Friday night with some skin issues. The dr's said this is normal in the recovery process. He has been home about 10 days - and really doing remarkably well-

But thats not why I'm here on this particular subject - I'm exhausted. For 35 days, I worked full-time - kept things together at home and drove 40 minutes each way after work to visit him...and went every weekend too. There were only 3 days I didn't visit.

I took 10 days off from work when he came home - i've been managing medications, making a zillion trips to the drugstore, grocery store, doing laundry....on and on..I don't have to tell anyone here how much work it is.

..and now he is back in the hospital - I went with him to his clinic visit yesterday - stayed from 8:30am - and i got home at 9pm last night - today - I got things together at home - ran errands and went to the hospital at 2pm - stayed until 5:30. At 5;30 his brother and wife came for a visit - so, I said that I was going to leave and have dinner with my neighbor.

I had dinner (pizza with a neighbor) - came home, made a pot of spaghetti sauce, cooked chicken noodle soup so that we have food when he gets home (I have to go back to work on Monday) - filled all the pills containers - and sat down to call Dennis.

He was not happy with me at all. He was annoyed that I had left the hospital when I did. I apologized and said I didnt' think he would mind - ....

So now I sit here and ask myself - am I not doing enough - i'm torn between feeling guilty and feeling a little hurt and angry at the same time.

Please tell me someone else has felt this way and I'm not the only one. Please, I understand he's going through a lot - really, I do - and I'm trying my best.

Can someone help me.
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Kathy, wife of Dennis (58 yrs old) diagnosed October 2012 w/MDS; bone marrow biopsy confirmed significant fibrosis;blast cells of 5%-10% of total cells, high risk refractory anemia w/ excess blasts (RAEB1); 3 cytogenetic markers; +1, -7, and +21
http://www.caringbridge.org/visit/dennismolyneaux

Last edited by KathyM : Sat Jun 1, 2013 at 11:02 PM. Reason: typos and clarification
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  #2  
Old Sun Jun 2, 2013, 01:48 AM
Neil Cuadra Neil Cuadra is offline
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Location: Los Angeles, California
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Kathy,

I've been in your shoes, trying to do too much yet still thinking I wasn't doing enough. The lack of activity in this forum section is a sign of the same problem. We all concentrate on the patient and forget the caregiver who's working double-time or triple-time and simply can't keep up.

If you can't give yourself a break without feeling guilty, think of it this way: Dennis's health depends on your staying healthy, and that means getting enough food, rest, exercise, and the physical and mental breaks that every one of us needs.

You can play superwoman for a day or two, managing work, home, hospital, and everything in between, but it's not possible to be a superhero day after day, week after week, month after month. Even post-transplant, recovery can be a slow process and you need to make it all the way through.

We all do tasks that we're used to doing but that aren't really that important if we think about it clearly. Let some tasks go. For now. When there's still too much you want to get done then admit that you could use some help. Ask each friend or relative (maybe coworkers too) if they can provide a little help to you and Dennis. Having a few other people pitch in can really help you get through the day and it also does wonders for your state of mind, because you don't have the entire weight of the world on your shoulders.

Like Dennis, you can expect some days to be better and some days to be worse. You both have to keep going and you both have to lean on others. It's for your own good!

I really hope this helps, Kathy, since I know just how you feel.
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  #3  
Old Sun Jun 2, 2013, 08:14 AM
Sally C Sally C is offline
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Location: Chesterfield, Va.
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Dear Kathy,
I remember when my husband was not doing well. Our world centered around him and his illness which I totally understood. I remember the day that someone asked how I was doing and it made me cry. It was the first time I had even acknowledged that I should be given concern and consideration as well.
You are doing the work of several women - all the while worried about him. Maybe if you showed him your post he would understand what you're going through a little better. I remember telling people that I didn't know which was worse - being the patient or being the caregiver. I still can't answer that.
Just know you are doing the best you can and that's all anyone can expect. Also, I imagine your husband has a little self pity as well as just the fact that he misses you when you aren't there with him.
Give yourself a break - you're doing a great! job and your husband is very blessed to have such a caring wife.
Keep up the great work.
God Bless,
Sally
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  #4  
Old Sun Jun 2, 2013, 07:00 PM
Darice Darice is offline
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Join Date: Jun 2011
Location: Colorado Springs, CO
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Dear Kathy

This is so tough, isn't it? My husband had his SCT 5 years ago and we just went out of state to do it . . . worked easiest for us. We were gone just over 2 months and got someone to watch the house and take care of the cats. I had already pretty much quit working due to his health issues, so that wasn't an issue. It all pretty much wiped us out financially, but the rest of it was easier to manage, not having to be 10 places and do 50 things . . . we just concentrated on his health. I didn't have anything else demanding my time/attention.

Since then, we're home and I have all the regular demands . . . and more. He has lots of health problems and my job just keeps getting bigger and harder and more time-consuming. He had the SCT to fix the NHL . . . and three years later here came the tMDS. I can't keep up with everything and I do get to feeling overwhelmed with everything. I have recently really made an effort to start doing things for myself. He supports that and knows it's important for me . . . but he still wants me at his side 24/7. Impossible. I try to be as supportive as I can, but there is a limit. He doesn't want anyone else helping him, and is more comfortable when I am with him or at least in the next room, but that just can't always be so. And I'm NOT a bad wife or caregiver when I'm not at his side 24/7.

You are doing all you can . . . don't beat yourself up. This is a good place to vent; there are lots of caregivers here as well as the actual patients, and we understand. Hang in there . . . and take care of yourself.

Darice
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hubby 73, dx NHL 2001, CNS involvement. SCT (auto) 5/08 [dx UTUC renal pelvis, 2010/surgeries/MMC], MANY recurrences, chemos, surgeries, rad. dx t-MDS 3/11: IPSS 1.5 (Int-2); MDA 11, RCMD trilineage, inc. Fe, ring sideroblasts, 7q del/mono 7 (51.5%), 46,XY,t(6,17)(p22;q25)[4]/45,XY,-7[4]/46,XY[12].
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  #5  
Old Sun Jun 2, 2013, 07:41 PM
sbk007 sbk007 is offline
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Its good to vent

Please tell me someone else has felt this way and I'm not the only one. Please, I understand he's going through a lot - really, I do - and I'm trying my best.

Its hard stuff. Make sure you take care of yourself. You could be direct and explain the timeline. When Ill we become self centered sometimes, sometimes we lose timelines. I say don't feel guilty and if you do use the right words to describe what your day was like. Good to hear he's doing well, that's most important. But, don't forget to take care of yourself.
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  #6  
Old Sun Jun 2, 2013, 07:43 PM
Al's Wife Al's Wife is offline
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Oh, Kathy, I so hear your pain. I'm sure all of us caregivers do. It is so difficult to watch our loved ones suffer this awful disease and become less and less able to have quality of life or a "normal" life. And then the guilt that maybe we aren't doing enough or, God forbid, we've taken time out for ourselves.
We are managing this new "norm" but it is definitely a rollercoaster ride. We have gone through so many ups and downs and each morning we just get up and thank God for another day.
My husband and I have been almost "glued" together since he got the awful news last August that he had progressed to AML and had "weeks not months." But he is just finishing cycle 10 of Dacogen and is having transfusions about once a month, for which we feel blessed. And I have finally started to leave his side for a quick trip to the store and to watch my grandchildren play ball. Sometimes he feels like going and sometimes he doesn't.
I certainly have a new respect for all caregivers. This is not a road any of us would have ever chosen for ourselves or our loved ones.
Just hang in there and remember you are just one person and you can't do it all. It's hard for me to ask for help, but I've had to learn to do it, and thakfully, I do have great family and friends that I can call on in a pinch.
God bless you, Kathy, and hang in there. That's all any of us can do.
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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  #7  
Old Tue Jun 4, 2013, 01:57 AM
kwaidz kwaidz is offline
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Join Date: Oct 2012
Location: Texas
Posts: 17
Hi Kathy,
Just wanted to let you know I'm another caregiver that understands where you are coming from. My mom is 74 day post transplant. A lot of the advice given here is great, but I know it can be hard to find time for yourself. I work full-time at night because I take care of my mom and baby during the day. My husband and I are not lucky enough to have a lot of help from family. Those who are nearby always have excuses why they can't help and other family is too far away. My husband and I do the best we can, cope as well as possible and try to take time to breathe and vent when it gets to be too much. Hope you have better days soon.
K
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K, daughter and caregiver of Em - age 64 dx Oct 2012 with RAEB MDS Intermediate risk. BMT on 3/22/13.
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  #8  
Old Mon Sep 9, 2013, 10:52 PM
DebS DebS is offline
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Join Date: Mar 2013
Location: IL, WI
Posts: 154
Questions That Caregivers Ask Themselves

1. Am I doing enough? Too much?
2. Why did I just start crying?
3. Could I just spend a few more minutes researching this horrid disease?
4. Why is my loved one yelling at me when I am just trying to help?
5. Why do I feel guilty when I am not doing something for him?
6. Did he take all of his pills today?
7. Why did the nurse have to stick him three times tonight?
8. Where are all of my lists?
9. Could I take care of myself later?
10.What would I do without these forums?


Thanks. I needed to get those off of my chest tonight. I KNOW many of you are feeling the same thing. We are not alone.

Deb
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  #9  
Old Mon Sep 9, 2013, 11:44 PM
LizR LizR is offline
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Location: Las Vegas, NV
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Quote:
Originally Posted by DebS View Post
1. Am I doing enough? Too much?
2. Why did I just start crying?
3. Could I just spend a few more minutes researching this horrid disease?
4. Why is my loved one yelling at me when I am just trying to help?
5. Why do I feel guilty when I am not doing something for him?
6. Did he take all of his pills today?
7. Why did the nurse have to stick him three times tonight?
8. Where are all of my lists?
9. Could I take care of myself later?
10.What would I do without these forums?


Thanks. I needed to get those off of my chest tonight. I KNOW many of you are feeling the same thing. We are not alone.

Deb
Deb - I think of most of those things daily. I could start a whole list myself but can I just add on to yours?

11. Why can't I just get the doctor/nurse/insurance to listen and/or understand?
12. Since he hates me to ask, do I ask him if he took his Zofran anyway or wait to find out?
13. Why can't his family understand his decisions and just accept them?

I confess. I actually keep a list of my lists. Years ago everyone thought it was odd but now it seems life-saving!
Keep on doing what you're doing but keep yourself healthy too. That's one thing I forget to pay attention to.

You are both fortunate to have each other and all together we just stay strong.
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Liz, wife of Bob (64) dx 11/2012 RAEB II now 15% blasts rare t(1;3)(p36.3q21) Vidaza, Aranesp, Exjade
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  #10  
Old Tue Sep 10, 2013, 09:13 AM
DebS DebS is offline
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Join Date: Mar 2013
Location: IL, WI
Posts: 154
Liz,

I thought I was the only one who kept lists of lists

I know I have to take care of myself, really. I actually have a doctor's appointment for myself today! That is huge for me.

God bless you and all of the caregivers who ask themselves: Can I get up and do this all over again tomorrow?

The answer is always a resounding YES!!!!

Deb
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