5 Responses to “How to Handle the Guilt of Caregiving — Part 2”

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  1. Teddy

    I’m from India. My dad died at age 94, on his 94th birthday, on Feb 12th 2011. I feel guilty because he died at home. It was his wish that if he got very sick he should not be taken to the hospital but be allowed to die at home with family around him. But since he was a thome, and his regular MD physician did not come home to examine his condition (which I thought was terrible – he had swollen feet – and edema that lasted more than a month, pale skin, low blood pressure, falling hemoglobin count, was unable to pass urine without diuretics ..and was frequently wheezing) I called another physician, who gave him an injection that he said would relieve his breathing…but he also said that my dad may not survive…and that night 4 hours after the injection he got palpitations, struggled to breath…and while my mother and myself were holding his hands and praying the rosary…he took his last breath…sitting on the edge of the bed. I always wonder…would he have survived if I had disobeyed his instructions and taken him to the hospital? Would he have survived if he had not been given that injection? Could his regular MD have made a better diagnosis that could have saved him…I feel guilt that I could not give him the medial care he needed at home and could not stop him from dying. I myself, seeing his condition, had kind of given up…because he kept saying…my time has come. I did manage (actually God helped me ) to help him come back from the brink several times these last 6 years of his life, when he survived cancer of the prostrate, a fall at 91 where he broke his hip, got well and walked again – at 91, he fell in the bathroom several times in his last months of his life… but survived all that. But that night…I donno…things happened so fast…I am dying of guilt thinking… I shouldn’t have allowed the doctor to give him that injection, if he had not been given that injection, he may have lived longer.

  2. Hi Teddy,

    Thank you for writing. I totally understand your feelings, as I wrote in the post above. Is there a clergy person, social worker, counselor or trusted sage in your family that you can talk about your feelings with? They might not have “an answer” for you, but just getting it off your chest verbally can help. You wrote that your father wanted to die at home surrounded by his family, and he felt like “his time had come.” I think you and your mother honored his wishes completely! Please try to speak with someone to relieve yourself of your guilt. It sounds to me like you were a loving and caring son! Your parents are lucky to have you. Best of luck!

  3. Dawn V

    My mom has early-onset Alzheimer’s (she is only 60 and is in the late stages already). My dad cares for her 24 hours a day while my sister and I (each with our own families of young children) visit once a week to help out. The guilt hits me all the time when I think that I could take the 90 minute drive to my parent’s house more often. But my father will say to me: “you have your own kids to take care of right now, don’t worry about me.” I get angry at my aunt and uncle who live in the same town as my parents: they don’t offer to help out my dad unless he pays them (from the very scant grant money that he receives from the state to hire someone to care for my mom a couple of hours a week so he can get away). I don’t feel guilty about this anger toward my relatives because they should help free of charge–out of obligation to family. The good thing out of all of this is that my sister and I know how we’ll behave with each other should either of us develop Alzheimer’s Disease.

  4. Dear Dawn,

    Welcome to TLeC! Your heart-felt words cause many thoughts to flood my brain and share with you. First, my sympathy to your whole family! Alzheimer’s disease is hard on the patient as well as the whole family, as you’re finding out. Early-onset of the disease is even more difficult to face. I’m so sorry your family is going through this!

    To a degree, your dad is correct. Your own young children and husbands need you, too. As long as he is physically and mentally strong enough to care for your mom (even if he has some paid caregiver relief), then it is his responsibility as her husband to be her primary caregiver. As you’re doing now, when you can, you and your sister can continue making the drive to give him a break and visit your mom.

    Keep an eye on him to be sure he doesn’t reach caregiver burnout. Be sure he is taking care of himself along with your mom. Help him get educated about the disease and caregiving challenges he needs help with. I hope you are all in contact with your local Alzheimer’s Association chapters, a wealth of free resources for families. http://www.alz.org

    As a family team, chart your mom’s progress and as the disease progresses ask your dad if he wants to bring in more paid caregiving help for your mom’s care. It may be too difficult at some point for him to do it all himself. Keep a dialogue going and let him know you are there to support him, even if you can’t physically be there as much as you’d like. That kind of support is equally wonderful, so don’t beat yourself up about having your own family to care for, because you do! Even a phone call every day will help — maybe your sister and you can alternate days to call. Keep giving him emotional support even if you can’t be there in person!

    As for your aunt and uncle’s lack of caring. . . Try to let go of the anger and resentment you’re feeling toward them because hanging on to these negative feelings doesn’t help you, your parents or your immediate family. It’s just using energy you could be putting towards more important things in your life. Let your dad deal with them on his own terms. Hopefully he’ll also not put much energy into dealing with people who aren’t sympathetic to his situation, but you cannot control what he does, only how you handle the situation between yourself and them.

    As you say, one positive is that your sister and you now have a great awareness of this disease, and will be there to help each other if either of you show signs of memory loss. Your caregiving actions are also a model for your children and extended families as they see you care for your mom, and support your dad, with respect and love. Your parents are very lucky to have you and your sister! Hang in there! Sounds to me like you’re doing a wonderful job!

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