How do we combat guilt?
My brother was admitted to the hospital in September because of some difficult symptoms. He had begun to lose the use of his left side and was falling more than we realized. He wasn't able to get himself into the bathroom in time and had some accidents. At that point he had been living in an in-law apartment at my parents house. My Mom, a retired nurse, had been caring for him for two years. We both had reached the point of needing anti-depressents to function. Once admitted to the hospital his doctors informed us that his brain cancer had progressed and he about 6 to 8 weeks to live. It was horrible. That night. while my brother was in the hospital my Mom slept for 13 hours. She was compeltely exhausted. Not only was she caring for my brother but also my father who is handicapped. My brother was not ready to throw in the towl so we pursued another cancer treatment to help alleviate some of his symptoms and improve the quality of his life. After the hospital he was admitted to a nursing home. A home where my Mom had worked for 30 years. She still knows a lot of the staff, etc so we were able to get him a gorgeous private room. He went through PT to improve his strength and mobility and is doing much better except for some cognitive issues. He wants to come home but we feel he is doing much better at the facility. If he came home he would turn back into a couch potato. At least atthe nursing home he is wheeling all around in his wheelchair and his friends are visiting him and there is a bistro with two male employees who are hilraious and love to talk football with him. All of these things have done wonders for his depression and our sanity. My brother can be very difficult. He makes hurtful comments while trying to be "funny" and I can't tell anymore if those are his true personality or the chemo brain I've read about. Last weekend he had a mental episode of aggitated paranoia, confusion and aggression. He wouldn't let anyone touch him. He recognized us but didn't believe we were who we said we were. I kept thinking that if this was happening at home it would be terrifying. He's a very strong man. At the nursing home they were able to give him something to calm him down until he was able to work through his confusion. It was devestating to me and my Mom to see him like that. He said later he was having flash backs to when he was in the army. He thought someone was coming after him with a gun. He was afraid he would hurt someone.
These are the things I try to remember to convince myself we are doing the right thing by not bringing him back home. My Mom deep down feels the same but she is struggling with a lot of guilt. None of us want him to be in the nursing home but I live an hour away with a fulltime job and house of my own. If my brother came home I would have to move home to help because my 75 year old Mom couldn't take care of him and my Dad. Even with my brother in the nursing home I still go down every weekend and cook, clean, drive and whatever else I can do to help. The guilt is REAL. This past weekend my Mom got emotional again about my brother being in the nursing home. We had taken him out to a restaurant for a steak dinner. It had been a great visit with lots of giggles. However, his cognitive defficiencies were evident. I had to discuss the menu with him because he was having trouble focusing on the words. Then I helped him choose his favorites. When the waitress came he looked at me because he couldn't remember what he was going to order. I had to cut up all his food and gently help him find things that were sitting right in front of him. I had to move the rolls away from him because he kept thinking they were his mashed potatoes, even though he didn't order mashed potatoes. It was a great visit but we were all exhausted afterwards because it was 4 hours of constant vigilence to make sure he was 'okay' and had what he needed. I can't imagine going back to 24/7 care. I feel like a terrible selfish person for saying this but I am relieved he is in the nursing home. I can see that my Mom is too. She's so tired. I constantly worry about my parents. I know my brother is safe and will be well taken care of at the Nursing home. Now I have to figure out how to alleviate some of my Mom's guilt. It's such a hard thing to combat. It doesn't make it easier knowing that you are doing the right thing for everyone involved in your situation, not just the person with cancer. It doesn't make it easier when my brother jokes that we are taking him back to the "Temple of Doom".
Comments
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Guilt
I was the only caregiver for my husband as he was dying of cancer. Our sons lived too far away to be of any help plus they have families they had to support. It is hard and during the last few months of his life, I would find myself loosing my temper with him and saying things I shouldn't have. And then I would apologize and tell him how much I loved him and yes I was mad but not at him but at the situation he was in. He was on in-home hospice. I still feel guilty about things I said to him. And wonder if I could have done more for him, don't know what, for there is the guilt.
Caregiving is very hard and as caregivers we do feel guilty of even the simplest of things we do and say. Your brother is where he needs to be. They can give him medicine that you and your mother can't to calm him. It is hard and brain cancer causes a lot of different situations in patients. I worked with a woman whose husband had brain cancer and they ended up having to restraint him because he would get up and wander out nake in the night and become aggressive. One of my granddaughters just lost her husband at 28 to brain cancer. It is hard to watch our loved ones go thru this horrible beast. Your mother has enough on her plate with your father being handicapped and she really shouldn't feel guilty about her son. I know that is easy for someone else to say. I lost my husband 4 months ago to this horrible beast and at the end it was hard for me to do everything once he was bedridden and I would be exhausted and not sleeping.
Wishing you and your family peace and comfort --
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Robillina,
You and your MomYou and your Mom are Angels. I wish I could say something to help you feel less guilty. Every word in your post should help you feel less guilty. He is exactly where he needs to be right now. I'm sorry you and your Mom don't see that. I guess that is a benefit of being on the outside looking in. I pray you will both find rest that you both deserve from all your hard earned efforts thus far. Hugs to you and your Mom!
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