Hello everyone. I am new here. I have been a spousal caregiver now for just over 4 years with little to no help.
My wife has stage 4 breast cancer that had metz'd to her bones and brain. She had been thourgh multiple surgeries, endless chemo, and 2 rounds of radiation. She finally went into remission a couple of months ago, but it was short-lived. It is back and has caused more lymph node tumors and a huge tumor in her lower back. She just finished round 3 of radiation for her back and we are starting a new battery of chemo. The chemo has never stopped, just changed as her cancer adapts.
She has regained a good deal of strength, but her short-term memory is shot, her mental acuity has diminshed greatly, and she has severe neuropathy from the chemo and bad bone pain most days. She gets around pretty darn well all considered, but the neuropathy and her weakened state means she has balance problems and walks slowly, often with help from a cane.
So now I finally, after these 4 tumultuous years, come to the place I see so many have been before me. And to think I thought it was just me.
My mourning is pretty much done. We know she is going to die from this. It is just a matter of time. We already have all of the funeral arrangements done and most of the legal work is in place.
Sometimes I wish it would just happen and bring the relief for both of us. Then the guilt sets in for feeling that way. Then I look around me and see what I will do when she finally passes and the guilt hits again. Other times I will feel so bad about my situation and then here comes the guilt again for feeling that.
Beyond the waves of guilt for thoughts I cannot control, there is so much more.
There is the isolation. I no longer see my friends, seldom go to work, or enjoy any of my old hobbies.
There is feeling taken for granted. There is always more to do and seldom a thank you form anyone, even her.
There is the loneliness. There has been no level of intimacy for years. Not physical, emotional, or any other kind.
There is the feeling like I am just a servant. Like I am only there to provide an income and take care of her.
There is the feelings of total inadequacy. Partly because, ultimately, I can not do anything to stop this vile disease. Partly because she has become so very demanding. Even with all I do, it is never enough and I can't seem to do anything right.
I know depression is setting in and my own health is falling off. I have my own issues I am not dealing with. I simply do not have the time to deal with that and her issues too.
I have been doing this for 4 years now almost completely single-handedly. We have no family nearby so they are very little help. And when they do come for a visit, they really only make things more difficult by disrupting my routine. The only thing they really help with is taking care of a few minor things that lets me spend some time catching up on other stuff I have had to neglect. And it has been a real shock to me how little support there is for spousal caregivers! I may have to see if I can help do something about that when all this is over and I have some free time.
I would like to brinbg in a housekeeper and other services to help reduce some of my workload so I can turn my attention to other things or even just get a little rest now and then, but she "doesn't want strangers in her house" and I simply don't have the energy to argue the point. So it goes on...and on.
OK. So I know I am not the first cowboy in this rodeo. Many, MANY people have been through all this too. It just feels awfully good to put it out there to others who understand. I have so much more I could go on about, but I think this is enough. Thanks for being here and reading this. This is the first time I have opened up on any of this to anyone!
Just getting all this out there to someone has helped immensely.
Bless you all,