Question for Caregivers?

[pritchie]

Don't sweat the small stuff and enjoy

every day. Also, to tell my husband

and son that I love them as often as

I can.

Pamela

[NancyT]

I feel like so many who wrote here, but the life changing sadness I feel stands out

NancyT

[cindi o'h]

Being a caregiver gave me purpose. I also learned that the good in me was not me, but God working through me. I listened. His hands. His thoughts. His good deeds, not mine. It was incredible.

Cindi o'h

[mrhodes]

I have truly considered what I could be, should be and will be doing with the time I have. It has become quite apparent that only 10 percent of what I was doing prior to my husband's diagnosis (work, family activity, etc.) was truly important and meaningful. I am trying hard to change that.

Melinda

[shirleyb]

I always believed in God but when Randy was dx'd, it became so much stronger. I realized that I had no control over what was going on, I could only pray for help.

I also realized that I needed to keep my relationships right with those I love. I make sure they know I love them because we do not ever leave the house or go to bed without telling each other we love them.

[myagle2]

wow, thats a really loaded question.

I feel lost

I feel I am doing a really great thing!.

I feel i dont have my own life

I feel lucky he is still here

I feel good when the tests are good

I have a hard timr going to work when they are bad

I feel bad when I know its not long to go

And worst, Iknow its not long enough~

Mary

[MalouDP]

Don't know where and how to start.

Lost, Stunned, Shocked, Scared by the minute but grateful by the second I am with my husband. There's no other place I'd rather be except next to him, hoping, believing, praising God. Too much emotion. Did not realized that I can still managed to go work with this beast in his chest, don't want to leave home for 8 hours but know can't afford not to. I praise God every single breath of my being. I am still lost yet have put a smile infront of him. I can't share to him all the worldly aches and pains I go through, used to complain about traffic, people BSing at the store, any annoying stuff, I can't help but to laugh at them now. WOW what a big U-turn in mind set this disease can do to our ones psyche.

God bless us all and thanks for bring up the subject.

[Bob-ellen]

There is a certain tolerance of things I would never have imagined, more patience, more acceptance, as well - much more aware of the moment in which we are, and ready to take time to "smell the roses" whereever they are.

Each day has become a gift.

Barbara

[Carleen]

There have been so many changes, it's hard to pick just one as the most significant.

When Keith was first diagnosed, a friend gave me a CD of a song called "Live like you are dying". But for me it is the opposite. Since Keith being ill I've learned to live like everyone else is dying. That sounds morbid, but what it does is make me more tolerant to everybody because I can never know what struggles they are going through that is causing them to be difficult so I give them the benefit of the doubt. It makes me be nicer, because I don't want any regrets about things I didn't say, or did say or actions done or undone. Instead of selfishly pursuing my fantasies and things that make me happy, I actively try and do things for others to make their dreams come true and make them smile. In turn though I've discovered true joy in the giving. I think I've found greater happiness in granting others' desires than I would in fulfilling my own. I am grateful for whatever time people can share with me, and when that time comes to a close I make sure they know how much the time, and they mean to me.

[Linda661]

I'm new here and if you read my newcomer post, you'll know I just lost my dad to aggressive brain cancer in Apr 05....now this.....

You know, all of this is deepening something really great in me, I think....yeah I am going through all sorts of things: incredible frustration, stress so bad that I am now on blood pressure meds since finding that my BP was running 190+/129 during my mom's initial hospitalization, generally really, really, mad at the medical system and it's apparent non-caring (like, why do I have to pick up all the pieces and get nothing but a giant run-around from them? I don't come close to having enough time to do everything that I need to do, like NOW), uncontrollable crying at times, etc. etc. I might be losing parent #2 way too soon.......plus I think alot about all our family squabbles and big personality differences and just sometimes feel like a big baby about this all being dumped on me when I don't necessarily like everything about my parents or some of the times we've had together either.

But......all I really care about is that I am somehow participating in the journey of a soul that needs help and doesn't know what to do any better than I do. All that drives me is to move beyond my personal "problems" and squirming to see to it that my parent gets the respect and attention they need to go through what they are going through as best they can.

Make no bones about it, my health comes first as the overwhelm is so much that I have to do that -- once the day starts, everyone wants my attention now....that just doesn't work for me anymore and I have had to set really strict boundaries on that for my own survival (like, you schedule time with me....I am not gonna sit and wait for you to grace me with your attention, I don't have time for that anymore!)

At least, in the end, I will know I have done something remarkable for someone who just needs someone to care when this world acts like they don't care.....I'd like to think that I'd do that for anyone and not just 'cause it's family too.

Linda

[lilyjohn]

This one really made me stop and think.

during Johnny's illness there were so many feelings and sense his death there are many more that have taken the place of some of those or just added to them.

Feeling totally helpless, I lost my trust in so many things and people. I have become much more cynical in some ways. I have a deeper faith. I have learned what being truly alone with no one but God feels like. I have learned that I am a lot stronger than I thought. I have learned that my biggest regrets are not what I have done but what I didn't do. I became determined to make a difference in some way even if it is only a small one. I have learned that a person doesn't loose their value just because they become old or sick but feel that there are too many who would just ignore them.

Most of all I think that I have learned to live in the minute. I spent most of my life thinking about the next day or the next week or year. Always thinking that tomorrow would be better but in the process I missed a lot of the value of the minute I was living. Once you feel there are really no dreams left you don't want to look to tomorrow so you learn to live today and get as much pleasure from it as you can.

One thing that I learned that we have all learned and that is just how quickly our world can be turned upside down. That the little things are what I remember most and those memories are more precous than anything.

[Inkerdoodler]

This disease impacts everyone in so many ways. Mostly I feel "helpless" -- like most women I want to do something to make him feel better... I am a "fixer" of wounds, physical and emotional, and when nothing I do helps, I get so frustrated! Sometimes I "hover" TOO MUCH and when I keep asking questions about how he feels, and making suggestions to help him feel better or improve his situation, I know that he just wants to get away from it.

While dealing with all the ramifications of Jim's lung cancer I've learned that my beautiful 36 year old daughter has breast cancer and will soon have to undergo a double mastectomy. Because she had radiation at the age of 16 for Hodgkins disease, she can never have any more radiation and will also face chemo after her surgery. She is also dealing with going through a second divorce so she has no tight support system other than parents/siblings and now believes she will never have a chance at a loving relationship. It's so hard to convince her that the BEST partners will love you not because of external things. She knows it in her head, but in her heart she's so afraid she will never find it.

I try to keep believing that everything in life has a purpose and that even the negative things come along to teach us something and make us better and stronger people... but the hard part is trying to understand why good, innocent people might have to suffer in the process.

The other part is just being so "bone tired" from having to take over virtually all of the family responsibilities and all the physical day to day tasks when you once had a partner to do at least half of them. I try not to get angry or resentful but sometimes it's hard!

On the plus side, we have discovered what our marriage vows really mean... when we recited "for better or worse; in sickness and in health" we really had no idea what that would mean. We have each had to support the other through serious health issues and it's proven our commitment. That part is very good and very reassuring. He is truly my life partner for no matter how long that might be.

Sandy