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how do i get back to me

anmahrie
Posts: 2
Joined: Oct 2004

at 23 I was put in the caregivers role. My partner was very ill. Today after three years of treatment and terrible side effects he is doing great. However I am not doing so well. I have no idea who I am. i feel lost and it is eating me alive. the focus of my life was on him for the entire time. I tried to express my feelings to him but I don't think he quite understands. Can someone please help me. I just do not feel like I can take care of myself the way I used to.

dickl
Posts: 39
Joined: Jan 2002

We have been caring for our son for 8 yrs. out of a bmt for leukemia. He has many late effects that require continual help everyday.We are thankful he's alive but it has taken a tremendous
psycholgical toll on all 3 of us. We are also the primary care people for our very old moms that still live in their homes. We have sought psychological and medical help from professionals that have some experience in post-traumatic stress,depression,and anxiety problems and it has been helpful. Take care of yourself now! Life will never be quite the same but it can be good. Fell free to reply.
dickl

anmahrie
Posts: 2
Joined: Oct 2004

Thank you for responding. I am so sorry to hear about your son. What you wrote about living life now really hit me hard. Because in a sense I have stopped. At least I have for myself. I think that I am mourning the life we used to have. I finally realize that we are two different people now. He too had effects from the chemo that came late and I think that it's because of this that I find it hard to breath. Almost like I am waiting for the next thing to happen. I think I should have used this community before now and maybe I would not feel like this. You have really helped me.I Thank You!

dickl
Posts: 39
Joined: Jan 2002

anmahrie,
We too wait for the next issue to hit but life goes on.People who have never had these experiences don't understand very well so it's important to use forums like this to talk to those that do . Almost al of the kids in the hem.-onc.ward when we were there did not make it, so whle my son has had a tough life as a child he's still luckier than many. It has also in stange ways left him a stronger person.He remembers very little of his treatment period and that it just as well. Never give in to hopeless and despair, there is help out there and you have to be your father and your stongest advocate.
You can e-mail me at this site under my user name dickl.

dickl

ChrisE
Posts: 8
Joined: Jul 2004

Hello anmahrie,

I am now twice a caregiver. I assisted my ex-husband for years and intensely for the year that he died. I came down with Chronic Fatigue Syndrome afterwards and, like you, lost the focus of my life.

I have not got it back yet and now I am caregiver for my present husband who has an aggressive stage iv cancer.

But...unlike you I am 56 years old and cannot visualize very well a new full life quite yet and I believe that the ability to visualize something for yourself is crucial to 'getting back to me'.

If you feel a continual sense of loss and futility, I think it might be good to do some serious contemplation about who you are now...what your interests and passions are and how you can find ways to express them (for me I already know this but I am still a caregiver now).

Talking to someone who understands you and who you trust would help. No, the person you have been caregiving for is probably used to the role and can't yet be a receiver for you (not at this point anyway). If no one like that is available, a therapist would be helpful I think. I have used them and it did help defuse some of the feelings.

DoubleKnot
Posts: 41
Joined: Dec 2004

Hello ChrisE,

I was so glad to read your post and to hear how you felt inside. I have been a fulltime caregiver for my husband for almost 10 years now. He had a massive stroke almost 10 years ago and then approx. one and a half years ago, he was diagnosed with bladder/prostrate cancer. Now they think it has spread to other organs. When you mentioned Chronic Fatigue Syndrome, it sounded like me. I wake up tired, no matter how many hours I have slept, do you feel like that also? It seems like constant worry and tension around here, without a break. I have to get in my vehicle and just drive around, in order to have a few minutes to myself. If I am in the house, he is like my shadow and watches me all of the time. I feel totally suffocated. I am trying not to feel like that, but I do. I don't know how long he has to live, but sometimes I wonder how long I have to live with me being in the situation.
I know that this being a fulltime caregiver is one heck of load to carry. As far as talking to him about anything, I can't do it. He either doesn't understand, or gets very mad. I am going to start going to a local Caregiver's Support Group, and hopefully that will help me to deal with the situation and him. Some day, I hope to be back to me again, if I can find that person again. To be able to laugh and enjoy life, is a dream that I am trying to hold onto dearly. Take care.

DoubleKnot

ExecDad
Posts: 6
Joined: Oct 2004

I am only 39 and have a 36yr old wife who is terminal and 3 kids (9,7,5)

I wish I had some time to smil ejust for rme

BionicKitty's picture
BionicKitty
Posts: 15
Joined: Mar 2004

I am caring for my mom who is basically dying. She is living in my home with me, my boyfreind, daughter and various pets... It's very tight, and I feel like I cannot give her adequate care right now.There is a chance she will improve, but the nursing duties are really taking Me away from Me too.I feel extremely guilty for considering the nursing home that I just rescued her from....I am a parent, a professional,a girlfriend, a bookeeper, a nurse, a psychiatrist,a maid ,an advocate. I don't have time to brush my teeth or get a haircut... I don't have time to be myself, and when I do find 10 minutes to be me again, I feel guilty that something might fall through the cracks if I dare let down my guard.. It is hard to take over another person's entire life, and watch them realize that they will never be what they once were. In my case it's hard to watch my mother become my child.I understand how you feel anmahrie, and all I can say is try to find little pleasures in your day.... even if only 15 minutes in a HOT SHOWER.Find something you enjoy and make yourself do it at least once a month... a class or yoga or whatever.Just remember who you were before, and hold on to that memory, like a photo of a far away friend... knowing you will see that friend again eventually....
Hugs,
BionicKitty

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