Lonely and Sad

coping in CA

I haven't slept well in the past few nights. 'T' is still at rehab and she is lonely and depressed. She is very deceiving. I think that we are really connecting but then she is totally convinced that there is a secret door in her room that goes to a non-existent basement. It's hard to step into her reality. Until today, she seemed to be getting stronger. At her chemo appt she was walking very slow with the walker due to severe back pain. PET scans are ordered for this week.

I know that she wants to come home. I told her I am afraid to leave her alone - I often take our son places, school, etc. She said that I will have to trust her that she would not do anything that she did not think she can do. I am more worried about other things happening physically that are most unpleasant. There are just some things I do not think I can go through again.

Our son and I are going away to family functions for 12 days and I am worried that they will want to release her before we go. Our parents and siblings do not live here. I have worked hard on myself not to feel guilty, but this one I am having a hard time with. I know she wants to come home (geez - her roommate is 92 and she is 49), but she might have to wait until we come back.

Over Memorial Day weekend we went to visit her every day (it's a half hour highway drive one way). Not easy with a typical 3 year-old who is testing me every moment of the day. I am glad the weather was good so that we could run around the court yard at the home/rehab. My patience is running very thin and I do not want to take my frustration out on him. This really scares me.

How do I grieve the current losses and manage the difficult road ahead with a 3 year-old counting on me? I am so scared. I can't sleep now because I am stuffed up from crying. I have felt so much stronger, but I feel it slipping away. All my friends have their own lives and families that sometimes I just do not hear from them. It just makes me feel so lonely now because I need to be around people. Since I don't work (quit to take care of son) I don't really have steady interaction with adults. Even when we do get together, we are always interrupted by our kids. Worst of all, I can't even share these feelings with my wife.

Thanks for letting me vent. Tomorrow I have to kick start myself and find a way through. And I thought puberty and college was hard.

Peace to you all,
Shari

KateNTx

Shari, I can feel your pain
Shari, I can feel your pain to a certain extent, although w/o the added stressor of a 3 year old. I can't leave my spouse alone either, and it's exhausting. Is there a half-day daycare, or even one you could use a couple days a week to give you a small break? Have you looked into hospice, or home health aids to help you take care of her? It's too much to do alone, and you shouldn't have to. If you have a few close friends, tell them you'd like to have a spouse/sitter/friend watch the kids for a few hours to get some adult time. (I have my best friend's husband "hang out" w/mine to buy myself a few hours a week of mental health).
You have to make decisions that are best for your whole family, not just the ones your wife wants right now. Trust me I've heard the "I won't do anything I don't think I can do" line too, and it makes me want to scream...they really *believe* they can still "control" things to the extent they did when they were well, and it's heartbreaking to tell the one you love that they can't. Some of my biggest fights with my spouse have been over this, although slowly he is coming to realize I'm not worried for nothing. (His falling 10 days ago helped make him see he does in fact have limits.)
As far as how to grieve, once more my suggestion is hospice, or a private therapist (most communities have some income based therapy/mental health support if money is an issue), but you need someone to be there to support YOU, and since your wife can't right now, maybe a therapist/clergy person can meet that need in your life.
There's more I would like to tell you, but not in public, if you want to PM me, you are most welcome to. Everyone needs support, and those of us facing Cancer pretty much alone need it more than most.
Sending Positive energy to you,
Kate

karenbeth

shari
You cannot do this alone. I don't have children (and frankly can't imagine doing what I did with a 3 year old as well), but I was the only caregiver for my husband, and without home hospice I couldn't have done it. Hospice will make sure she is safe, and that you have the support you need, both physical and emotional.
Also, I realized while going through it that if there is ever a time to reach out to friends and family, this was it. In the beginning everyone offered generic "help" and later on I decided to take people up on it. Being specific helps--ask someone to stop at the store for you, or come by and have a cup of tea with you, or whatever you need.

You have tough choices and a long road ahead...but you are not alone, there are many here who understand. My thoughts are with you.

Karen