need advice from patients and caregivers

[shelliemacs]

Ok, how can caregivers take time for themselves when the person their caring for has to deal with it 24/7/365??

Here is my particular situation and I am interested to know how others handle this both as patients and caregivers..

Since my moms diagonis 2/7/03, I have literally been at her house every day, twice a day. Sometimes I do nothing but sit and talk with her, other times I am doing laundry, making dinner, cleaning etc... My husband, whom I have pretty much deserted since this dx. wants me to go away with him for a weekend and I cant bring myself to leave her side. Even my sister tells me I have to make time for TOTC (Things Other Than Cancer). I literally cant, I become panicky when I am not there, thinking that something is gonna happen and she will need me. Now she does have her husband, my step-father there and although I dont think anyone takes care of her like I do, he is not incapable of it. I leave my house every morning before my husband gets up to go and give her breakfast and make sure she's had morning coffee and such...then after work I go over there until she is ready to go to bed. I know if this keeps up my husband may bail on me and to be honest I cant take time to think of anything else but her right now even though I know I should.

my question is HOW can I not be consumed with panic and guilt to go away for a weekend, when I know she has to live with the cancer and how she feels 24 hours a day, 7 days a week. How do I go and enjoy anything at all? I think I am being selfish if I go and do something fun because she cant right now, and how do I have fun when she is home and suffering with the horrible side effects of treatment?????

please from the PATIENTS point of view, how do you want your caretakers to really act around you. Am I smothering my mom??? Am I a constant reminder that she is sick???

fro the CARETAKERS point of view, do any of you experiance this and if so how do you deal with it.

[AdaW]

Dear Shelly,

My heart really goes out to you because you are trying to be the best daughter you know how to be. I can't speak for your Mother, but if you were my daughter, I would tell you to live your life and nurture your relationship with your husband. In fact, that's how I've approached my cancer. I don't want anyone's life disrupted more than it needs to be.

Your Mom seems to be able to manage while you are at work. Why not compromise with your husband and go away for one night instead of the weekend--baby steps.

I can tell you, from the bottom of my heart, that it really makes me the happiest when my family is out and about and living life to the fullest. That's how I want it. Have you discussed your feelings with your Mom. What does she think?

Ada

[shelliemacs]

Ada,

thank you for that. I really find comfort in your posts because like I have said before, you remind me of my mom. She Loves Hawaii and fortunately she has been able to go their twice in her life time.

No I have not talked to mom about this. She is worried about me worrying about her and really feels I am close to or already over the edge. I tell her about the troubles I am having with my husband but never ever tell her its because I am over there so much. I could not and would not stress her out anymore than she is.

I am married but don't have kids and If I did maybe I would have to focus on them. but because I dont I focus 1000% on mom. I dont want to be a reminder to her that she has CANCER but I think that is what I am doing by hovering over her.

[natalie]

Shelly-

I can relate to you whole heartedly. I've completely neglected my husband and dedicate everything to my mom 100%. She is my ultimate priority right now. I don't have kids either. Sometimes I wish I did so that I could be reminded that I need to have a life too. My parents have moved in with me temporarily so I don't feel as guilty leaving for a day, but a whole weekend would be hard for me too. I don't know if you are like me, but I am a "controller". I don't think people can do things as best as I can (which is B.S.). I'm dealing with a situation I can't control, so I try to control everything I can surrounding it and then I'm exhausted and drained which isn't healthy for my mom. I agree with Ada by compromising and going one day and night. You have to take care of yourself so that you can be an even better caregiver to your mom than you already are. Your mom knows you love her and care. Let go for one night. Give yourself one day of not controlling your surroundings. Your mom will only be a phone call away.

[Candy]

I think everyone of us on this board knows exactly what your talking about. Now that my husband is sick I want to be with him every single second of the day. I don't accept invitations or do anything other than go to work. Last weekend when I got more or less forced into going out with my sister (for a pedicure) I was shocked that Hugh seemed to jump at the chance to go to work for an hour or so to help with the retrieval of a car that had been sunk years ago in one of our area lakes. That night he was a different person - he said he hadn't done much but that he had the feeling like for the first time in a long time that he had "done something". And I was also shocked to realize that while I thought about my husband the entire time I was out, I had actually enjoyed that pedicure and came home feeling a little less stressed. When my Mom was sick several years ago I, like you, put my family on hold. I hardly remember any real details of the year before she passed away. My children and my husband took a back seat the entire year. Though she lived only 1/2 hour from me she was in the hospital almost 3 hours away and I took that trip a minimum of 5 times each week sometimes with my husband and sometimes without. I made arrangements with work to have every Tuesday and Thursday off and also drove up Friday after work and every weekend. We had a camper and we put it on a seasonal sight about 1 1/2 hours from the hospital to make the trip easier on the weekends, I missed my children's concerts and sports games, they left for school and returned from school to a babysitter's house during the week and stayed with babysitters on the weekends, we seldom ate a meal together. Their grades suffered and our home was not happy. I couldn't think of anything else, it consumed me. In retrospect I wonder how my marriage survived that year. It did, my kids were relieved when things got back to normal as was my husband, but no one suffered any lasting ill effects from that year. But due to my inability to find some kind of "happy medium" with the whole situation my family suffered. Maybe not like my mother was suffering but a real suffering non-the-less and I know my mother would have been distressed to know that. I haven't changed, only the family member has changed. This time it is my husband and my children are grown. I am immersed in my husband's illness and I don't seem to have time for anything but him. I think I may have a point in all this rambling, which is, when I came home Saturday from that pedicure and Hugh was all excited about "accomplishing" something and I was ever so slightly more relaxed than I usually am and he cooked supper for my sister and I while we sipped some wine and got a little tipsy, I realized that we really need to try hard to find that "happy medium", to make sure we remember all of our loved ones need us not just the ones that are ill and that we also need to tend to ourselves as well. I think when we do that we are helping our loved one that is ill as well as our families and ourselves. Now, that said, I have to say that I just declined an invitation to attend a retirement party for a collegue of mine

[rayroy]

I know what you mean. I moved back with my parents 2 and a half months ago. Unfortunatley both parents are ill. Luckily there is 3 of us taking care of our parents almost on a 24 hour basis. I usually get up at 830 am to take my nephew to school then I come back home to give my dad coffee. Then I make his daily supplement drinks which he drinks throughout the day. I take care of his lunch and I talk to him during the day trying to cheer him up. I am also here to talk to the nurses that come here twice a week. I alsoencourage him to go outside and walk as much as he can. I want it this way, I feel I am doing all I can. I will worry about working later. I am currently taking graduate courses on-line so I can stay home and study its convenient.

It's okay to go out once in awhile. It is up to you though. For me, I would go out for a day, never more. My wife is living here with me, so I can't keep her bored all day now. Luckily she udnerstands our situation and is helping out also. I feel guilty sometimes, lets say if I go to a ballgame or something, but I know its good for me to relieve some stress and to be with my wife. If my dad gets significantly better than maybe I can go out for a few days. For now, I prefer to stay at home a lot, its my choice and I think its a good one.

[rayroy]

Shelly your mom doesnt seem to be in critical condition so I would take a few days off why not! My dad's condition is maybe worse and is in the hospice program so I wouldnt go anywhere for more than a day. There may be a time when you need to be with your mom all day long for now enjoy the fact that she is stable. good luck

[Don Wood]

I am the caregiver and the only way I can survive is to take breaks from the cancer scene from time to time. If I didn't, I would soon be a fasket case and no good to anyone. I say, take the weekend off. You deserve it and so does your husband. Don

[Carleen]

Shelly,

I am sorry you are feeling so much anxiety. It's really not healthy for you. That being said, I know exactly what you mean, because I am feeling the same way. Since my husband's dx, I've been unable to accept a dinner invitation away from Keith, for fear of missing one second together because I have an enormous fear that we won't get to spend enough time together. I also have panic/anxiety attacks when I am away from him. When I go to work, all I do is think of him and often have to sit in the bathroom crying, or with my head down until I can gain control of my fears. I cry on the ride to work because I am driving away from where my heart and soul longs to be, and I cry on the way home, because I just can't get there fast enough. When we are home together, I just want to be next to him, take care of him, and make him comfortable. When I see his water glass get near empty I jump up to fill it. I wait on him hand and foot, because even though he is still capable of doing things, I can do them easier so it makes sense. I don't get out of breath just from making dinner.

Last month though, he went away on a trip for his job. It was the worst 4 days of my life, but when he came home, and I saw the first smile on his face since dx, I realized that what I was doing was for my benefit more than his. He's been afraid to tell me that I was smothering him, because he saw that I was hurting and knew that doing what I was doing was making me feel useful. When I finally had the nerve to ask him, he told me that yes, he could use some room, and he would feel better if his life could have some air of normalcy. HE wants to feel useful too, he doesn't want to feel like he's ruining my life.

Keith threw me a party last weekend for my graduation, and at the time I posted that I couldn't imagine going threw with it, or enjoying it. But I did, and I knew it's what he wanted for me. He really wants me to be able to enjoy life.

I think your mom would want the same things. She loves you, and wouldn't want you to give up your own life for hers. You need to think about needs. What you need verses what your mom really needs. I would suggest talking to her about what she thinks about you going for a weekend. Also, if you do decide to go, I am sure you will be worried and thinking about her every second, but you'll be surprised you may still be able to find moments of happiness. Maybe you can arrange a couple of times each day to talk on the phone with mom. Make a standing date to hear her voice, and maybe that will alleviate some of the pain of seperation. I know that Keith calls me while I'm at work, and it really helps me get through each day.

Best Wishes,

Carleen

[JudyB]

Shelly,

You pose some very interesting questions. As a patient, I had my husband & daughter as my support team. Daughter Cris took me to my once weekly chemos because I got so loopy from the Benadryl that I couldn't drive. (Also, the nurses wouldn't let you leave alone.) She also came and held my hand during early tests. Once we realized they were pieces of cake she no longer came. I had my husband & daughter (and sometimes her husband) come with me for doctors' appointments, so everyone could ask their own questions. I did not have anyone w/me for radiation since it was every weekday and took only a few minutes and didn't impede my ability to drive..

We both knew if she hovered over me constantly, one of us would have to sock the other. I also think it would have made me feel like the cancer was fatal and that my days were numbered. I wanted to be treated the same way I was before cancer with the minor adjustments, as noted.

You should talk to your mom. Maybe she feels like you are doing too much. And maybe you are. But you may have conditioned your mom to needing you so much. It is a noble task you are doing, but that doen't mean it's right.

I always tell people, "Don't buy into guilt. It is totally valueless." If you don't like what you are doing, stop doing it. If you need to change, then change. Just don't buy that guilt!

Finally, your husband needs you, too. Your mother would not want to be responsible for breaking up your marriage. I'm sure you have also read accounts where divorces are the result of deeply felt family stress.

As Shakespeare so eloquently put it in Hamlet:

This above all: to thine own self be true,

And it must follow, as the night the day,

Thou canst not then be false to any man.

In other words, you have to take care of yourself, Shelly, so you can be there when your mom needs you. JudyB

[LindaMRG]

I think you can see we all know what you mean. All I think and pray about is my father's lung cancer. But, the weekend of the 30th I did go away with my hubby and daughters. It had been planned from way before the diagnosis. I felt GUILTY about going, but I couldnt let my daughters down. Also, I know my father would feel bad about me cancelling plans. He doesnt want this to monopolize everyone's life. So, it did ease the guilt a lot knowing that. Having said that, I do put a lot of other things on the back burner (hubby included), because sometimes I just dont know what to do or feel that my father needs me the most right now.

But you asked for advice. Go with hubby. Dad will be fine. It sounds like you are a wonderful daughter.

[kimblanchard]

Shelly

I understand your feelings, I was the sole caregiver for both of my parents many years ago and felt totally responsible for their care. In retrospect I am glad I did what I did, when they passed on I had not one regret, I did everything I possibly could for them. I had no guilt and was able to say goodbye without a lot of anxiety. However now that I am the patient I do feel differently. I am still able to do most everything for myself so I don't need a lot of help, I have a very devoted daughter who calls me every day and has us over to dinner every weekend and comes to doctors appointments with me when I need her. She would do more but I will not let her, she has two young children and a husband and a home and has a life of her own. I actually try and hide things from her because I don't want her to worry. When I am not feeling well I do not tell her because I don't want her worrying which she does incessantly. When I had a bad spell a couple of weeks ago with vomiting and nausea she got so upset that I promised myself I would never tell her again when this happened to me. I firmly believe that you should take that weekend with your husband, at least go overnight and call you mom while you are gone to check in. You do have your own life and maybe mom could use a breather too and I am sure she will do just fine.

Bess B

[Tiny]

From a mom's point of view: There is life DURING cancer, and I certainly want there to be life AFTER cancer...that would be the greatest gift you could possibly give me--your CONTINUED happiness. So my hope for you would be that you achieve a balance for yourself, and thereby perhaps for mom. Talk to her; talk to your husband; continue to talk to us. Take some time for you and your husband to renew yourselves in order to have reserves to nurture mom in the future. This journey is tough and may be long.

[Andrea B.]

Shellie, I am so sorry for the anxiety you are feeling. It can be so very overwhelming. I remember a few years ago when a friend's mom was diagnosed with ovarian cancer (her mom is on the east coast and we are on the west coast). I remember saying to my friend that I was so impressed with how she was handling the situation, because if my mom was diagnosed with cancer I would drop everything, move home and do nothing but take care of her. Well, unfortunately...here I am. I am lucky because my mom lives so close to me. In the beginning, I felt the paralyzing fear, I need to be there for her, I can't do anything else...because what if something happens and I don't get this moment again. Well after some needed (continuous) counseling, a wonderful support group and loving parents, I realized that life does go on and that our loved ones, including my mom, want me to live it. I see my mom almost everyday, but I do take the moments to go away for the weekend, go out to dinner with my friends, take my daughter to the zoo. I now spend my time helping my mom with errands or other tasks she needs help with, I go to her appointments with her and we also enjoy time away from the disease...we will talk about her childhood, what my daughter is up too, etc. I find that by my life going on, it gives my mom an outlet too. I talk to her about how I feel guilty and there are times I have thought about moving home. My mom tells me she would never want that. She knows that I am there for her and love her unconditionally. It is hard, but you MUST nurture yourself and your husband. My friends and my mom continually remind me of this. I am one that always used to feel guilty, but now I am realizing that it is such a useless emotion. If I feel bad about something in particular, I tell my mom and we talk about it. I am able to be there for her, but nurturing myself too. It is not always easy.

Talk to your mom. I am sure she would share her feelings with you. You sound like an amazing daughter and I am sure she knows how very much you love her.

You are in my prayers and I do wish you some release from the anxiety.

[norme]

Goodmorning Shelly,

Having been there like so many of us have, I know that one must also take time for one's self, spouse and children too. You have a father who I am sure would be only to happy to take charge of his wife while you are gone. Who knows, he may wish that he could do more for her without you being there all the time. I know when my mom was going thru lc, my father was in charge. I was second. When he couldn't do for her then I would. When he was sick with lc, I took charge after him. He mostly ran his lc the way he wanted it. He did not want in anyway to upset my family routine even though he knew we were there for him. When he was feeling good, we would move back home, 4 miles away. When he was feeling bad, we moved back in. We did this off and on thing and it made him feel like he was not imposing on our lives all the time.

When my husband came down with nsclc, our son wanted to be with us at all the drs appointments. He probably felt we were not capable to ask questions....... All children who love they family have a hard time dealing with their parents being sick but they must remember that we are capable of doing most things for ourselves and we love being alone with each other.. We can manage very well. We will let our son know if and when we may need help and he will be there like you with your parents. Give them both breathing room.. Have a nice weekend. You and your spouse deserve some time alone....plus your mom and dad deserve time alone.....they didn't come this far without doing for each other all those years.....

God Bless

Norme

---------------------

husband Stage IV nsclc

Dx'd 7/31/02

Left lung removed and 5 to 7 lymth nodes 9/11/02

Radiation and chemo 10/02 - 11/02

Radiation 12/02 - 2/03

2/03 meds to brain - 10 whole head radiation treatments

4/03 med to bone - 10 radiation treatments.

Ask yourself how you would want things to be if you were in your mother/father's situation and go from there. God Bless.

[RAY A]

Shellie,

I agree with everyone. As a person dealing with cancer all I can tell you is what I told my wife. The biggest thing that I worry about is Cancer affecting all the ones I love. If I was your mother I would demand you to go away for a break. Your mom might feel like she is being such a bother to you. And maybe if you take a weekend off I may make your mom feel like things are getting better!