This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
I wish I could take away your pain... praying.
My 10 yr old niece had bone cancer. They cut off her leg. The cancer had already spread to her chest/lungs. Every scheduled chemo (Radiation?), she got weaker and weaker. The last chemo was too much for her. She had completely lost her appetite, and even to sip water caused her to throw up. Her mom decided to take her to the ER when she kept throwing up (heaving nothing) and couldn't stop. Her heart stopped enroute. ER docs spent 30 minutes trying to jumpstart her heart. Imagine, that being your last thought in life - throwing up, feeling miserable. That was the one thing that stood out for me. Poor girl...
Pam, I'm so sorry that you're facing this. I'm also sorry for your daughter. 32 is still so young.
Drs especially Oncologists are famous for not facing the truth and doing what is best for the patient. That as you know, is why it is called "comfort care" make whatever time she has left peaceful and pain free. I can not imagine what it is like to loose a son or daughter especially when you have to stand by and watch helplessly as they decline. You are such a strong woman I know you will do it with comfort and grace.
I hope you can make peace with your decision and know that I will be here to support you.. HUGS MY AC FRIEND!!!
Bookluvr, that is just the scenario I want to avoid, and Veronica is right, they just don't know when to quit. They don't know when more is too much. The treatments are worse than the disease if you let them keep going. This doctor hates me, hates my questions, resents anyone who dares to suggest anything. He actually puts his nose in the air and arrogantly waves his palm across the room trying to silence me. I call it the Wetzler Wave. The nurses say he is brilliant and dedicated. I say he has tunnel vision.
Pam... I am so sorry you and your daughter are going through this right now. 32 is so young! Big hug.
Laura, I had that happen to me. I couldn't access AC from one computer, but I had access on the other one. Then one day, there was a glitch on AC, and I got kicked out. When I tried to sign back in, I couldn't. So, I sent AC an email and asked them for my password. Yep, I was off by a few numbers. That was I couldn't sign in.
Red, thinking of you and your husband. As I read your words, I was imagining it. That must be really heart wrenching to hear her pleas for help, and the lost sound of her voice.
You have us here on AC to talk with. We're all in the same boat.
This will be one of the hardest things, if not THE hardest thing, you'll ever deal with in this lifetime.
I'm really beginning to understand why people cut themselves. When you deal with pain and grief and sadness and despair that's so intense it feels like a white hot burn inside your whole body, it makes you a little crazy. When I had to watch my mom go through alz, especially that last month, I wanted to shriek and scream and pound the walls. I felt like I wanted to tear my hair out, claw my face, do something, anything, physical to stop that unholy pain.
I always knew the day of reckoning would come. I always knew the day would come when I'd be left alone with a lifetime of unresolved and unacknowledged pain. And I feared it. It's loomed over me my whole life, that pain. And now it's here after my mom is gone...
I spent 48 years of my life one pissed off bitch. Why? Because being a pissed off b***h was a whole lot better than the alternative, a sobbing, twitching wreck curled into a ball in the corner. My mom would have broken me like a toothpick had I not had defenses up.
Those defenses are now crumbling around me. No matter how I try to suppress, suppress, suppress that pain, it's getting stronger and it's claws are like razor blades. What I've spent my whole life looking away from, the pain, the fear, the anger my mom poured into my soul without mercy. The lack of affection. The lack of closeness. The lack of love. The lack of caring. The lack of respect. The lack of smiles. The lack of laughter. The lack of peace. The lack of joy. The lack of hugs. The lack of happy, shared moments. So, so much lacking in our relationship. And I bled. Every single Fing day, day after day, year after year, for 48 years I bled internally and nobody ever knew. Certainly not my mom. I would have slit my own throat before I ever allowed her to know she could hurt me. But d**n, did I rage. And I hated myself for that rage, that anger, that evil. But at the same time, it was my salvation. I don't hate my mom. I never did. It felt like it. But that was just more armor. And I had 100 feet of steel and granite, aka RAGE, around me my whole life.
So sorry everyone. So confused. So much PAIN. I feel I'm literally being consumed and eaten alive. It takes everything I've got to keep standing and keep going.
I've been avoiding AC because of all the PAIN here. I feel so raw that sometimes it feels like I can't take one single thing more that's painful or sad, not even a drop of it, or I'll crack like an egg. Sometimes I feel so filled with grief and sadness that it seems I should start seeing cracks all over my body from the intense pressure of it.
I'll heal. I'll get over it. I have to.
Peace today to you guys. *hugs you guys* Stay strong. I hope the day is a good one for all of you and your charges.
Heart that is my plan, now the awful winter has gone, to start getting out, meeting new people and doing new things. My life stopped five years ago so, apart from my beloved dogs, my world right now is totally empty. I'm not sure I remember what "normal" actually is.
My Mum has been dead now over thirty years. I never had to care for her and wasn't present when she died. I did not want to see her after she died and I am still glad that I did not. I didn't want that image in my eyes for the rest of my life. I can still see her face but feel no loss and no affection. I don't believe she was capable of it as she had never had it. The youngest of 8 she was raised by an older sister and merged into a familly of about twelve with her mothers second marriage which i suspect was one of conveniece with so many young children to care for. I only met step grand dad once and never remember him speaking. He had a limp and a big built up shoe for his club foot. I never talked to my grandma because she had had a stroke by the time I met her and could not speak. She did smile at me when i played with her paralysed arm. I was about three and fascinated with that. I would pick it up and drop it. No one ever told me to stop even though they were right there in the room sitting at the kitchen table under the air raid shelter - my mother and my aunts. I don't know if I hurt grandma or not because she just kept smiling. There was no affection in the room non to give and none received. So sad
I couldn't help it. I giggled about you picking grandma's paralyzed hand and then dropping it. That's what brought to my mind of Nana. Depending on the personalities, I think grandmothers make the grandkids get away with lots of stuff. I don't ever recall any of my aunts/uncles/parents showing Nana any affections. Only us kids seem to fight over her. Thank you for sharing your story. It also made me go down memory lane with my grandmother.