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My 78-year-old mother has stage 4 kidney cancer and is currently taking Sutent. She is suffering from numerous side effects including nausea, vomiting, loss of appetite, constipation, diarrhea, insomnia, and fatigue. She refuses to allow anyone except my 79-year-old father to care for her. After four weeks of treatment, my father is exhausted, both physically and emotionally. I do not know how much longer he can continue to provide 24/7 care for her. Family and friends are willing to provide meals and respite care, but my mother insists that my father is all she needs. How do I convince her to accept help before I lose both my parents?

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Thank you for all your thoughtful comments and suggestions. I really appreciate you taking the time to share your experiences with me. I think you covered everything from practical advice about contacting hospice to personal advice about dealing with the emotional aspects of accepting help. The next few months will be challenging for me and my family. I live 6-1/2 hours away from my parents and I have one sibling who lives nearby. My parents have refused help from both of us, insisting that we should carry on with our lives as if nothing is wrong. I call them every day, listen to them tell me what a terrible day they've had, and then hear them say, "but don't worry, we're fine." My mother is in denial about her health and my father's health as well. My father will keep trying to care for her until his last dying breath. They've been married for 56 years and still live in the house they bought when they got married. I know that they will never want to leave that house, so I hope and pray that we will be able to convince them to accept some outside help before my father is no longer able to care for her and himself. Thanks for listening.
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I would sit Mom down and tell her two things, one... "Dad might die from taking care of you, do you want to lose him, a high pecentage of caregivers die before the patient" and Two... "If you dont accept help, the doctor will eventually not let you go home from the hospital or doctors visit next time and can admit her into a nursing home, do you want a nursing home, or dad sick?" WIth lots of slow talking explaining and love, I bet she will come around. After all, whats better then both being home together with help , beats separating, death, or a nursing home. Keep on it, you'll win the battle. Lots of hugs and love to them...
Luvmom
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Unfortunately, you and your father are going to have to take a hard stand with your mother and explain that your father cant keep this up without some help. I have seen this happen in my own familiy as well as with clients here in TN. My dad literally almost died from taking care of my mother for 20 years. You are just going to have to come to an agreement. This will be one of the toughest things he will do in a caregiver role. He must MUST must take care of himself before he can do her any good! Good luck!
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Many folks have provided you with information regarding hospice care, medicare and other logistical information. I would like to address the emotional aspects of your situation. While it seems to you, the adult child, a matter of logistics regarding getting the care your mother needs and your father can not provide, for your mother it has much greater meaning. As long as it is she and her husband handling the situation, in her mind things aren't hopeless. When an aging and/or ill parent has to realize they need more care than can be provided by their spouse, it may be seen as the beginning of the end. This is a significant moment in the life of any individual, especially our parent's generation who have lived productive, independent lives.
Let your mother know that your goal is for her to remian independent safely(in her own home?). And to meet that goal someone must come in and assist with some of the daily living tasks your father is unable to assist her with. Perhaps present to her that she and your father will make decisions about who comes into the home or provides assistance (so she feels she is still in control), but it seems the time is now to be assertive about ensuring she receives the level of care suitable to meet her needs and to protect you father from becoming exhausted and faltering himself. I know these are hard times for you, my parents are 88 and 86, living in their own home, and are resistant to outside help. They are doing okay now, but I anticipate the time when more care will be required. Even as a professional social worker, these challenges cause me stress and worry. Good luck and warm hugs as you address this issue with your parents. Please also keep close to your heart the fact that it is a great honor to guide our parents through this last life stage with dignity, respect and love.
Sherrie
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This all sounds like really good advice. My parents are only gradually beginning to concede to accepting help. I make as little a deal of it as I can - pick one thing that seems to be going amiss, and quietly step in with a solution that is easy to say Yes to. Perhaps it is your father that you need to convice. In a sense, if your father is the caregiver, it is his responsibility to determine what kind of additional help he needs. Is he willing to start letting someone else bring meals twice a week? or to do cleaning once a week? This would free up some of his time, allay some of his burden, and get them both used to the idea of having help in the home. It might be easier if it is coming from him as caregiver, and starting with things that offload the burden from him but are not directly related to your mother's direct care. And maybe go from there, you could add more support every week or so. Clearly it can not continue as it is now. Gentle insistence may be the right tone to strike with him. It may also help to narrow the number of people who come to help to one or two to start with.
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Great responses and support here - what a wonderful community. I'll add my 25 cents (I'm always more wordy than 2 cents) worth. :-) As paid caregiver, what I have done for the reluctant new client is to come in and meet them, free of charge, and sit and talk to them about what it's like to have a hired caregiver (or Hospice) come into their lives. Everyone fears the unknown. Knowing just a bit more, and not from you (no family member is ever an "expert" at anything, you know!) may help ease her mind. Oh, my gosh, it is SO personal to have help with these sensitive things. Imagine - a 95-year-old woman I don't even know at all allowing me to help with her toileting. That's amazing. That will always be amazing to me. If I lived near you I would do this for you. It's an outreach, and not a money-making effort, for me. Then, if I happen to be a fit, we talk about hiring. I've gotten two of my jobs this way. More importantly, though, it was a very good introduction for the family to the world of non-family caregiving. I'm happy to tell a family what to watch for, look for, and ask for in a caregiver. A couple of places I would direct you to for THIS kind of help, should you choose it, would be a local college with a CNA program, and an Internet elderly care job site. Maybe even Craigslist. I feel very strongly about having someone take your mom's hand and look her in the eye and say "Hey, it's really not so bad having someone like me take care of the tough stuff so you and your family can concentrate on being together and resting." Remember all the times your parents did something "for your own good" when you were young. Now it's your turn! You have to be stronger than you think you can be. And all great things happen outside of your comfort zone. You won't regret offering this care, but you might regret NOT offering it. Be strong!
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I totally agree with the other respondants here. When my father needed a companion, I had to talk him into having someone come in to help my mother who was recovering from a hip replacement. Mom knew that he wouldn't agree to having someone come in to help him, but to help her was a different story (even though in a couple more weeks she would be 100%). It worked beautifully and he had someone there for him until he passed away.
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I'm sure there are privacy issues with your mom. Your dad is all she's known and she doesn't want to have to 'reveal' herself to others. There is probably a ton of stubborn attitude as well.

My dad was the primary caregiver for my mom until he was diagnosed with a glioblastoma last October. Poor guy with a brain tumor was waiting on her every demand. Together they wanted to tough it out. Hello!!!!

It's hard to be the adult to your parents, but put on your big girl/boy pants and call hospice ASAP. Sure, they'll be angry with you for awhile, but the situation you describe is similar with what I had to deal with last October. If you are unsure about how to proceed regarding hospice care, call your mother's doctor. The clinic that was treating my dad referred us to the hospice where he passed.

After the first visit from the hospice people you will feel such a sense of relief. I know it doesn't seem possible, fearing your parents' anger, but I promise you that you will be glad you called them. You deserve the support and kindness they can provide. If your mom really is in end-stage, in most cases her drugs will even be paid for by Medicare.

((Hugs)) to you in this difficult time. I know it is definitely not easy.
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I've found that my mom is most likely to go along with something that's for the sake of her and/or my dad's health and safety when I'm able to find something positive that's "in it for her" (meaning something she would enjoy or appreciate).

It's not easy having to be the bad guy, the child pointing out what an elderly parent does not want to hear. I think that as caregiving children of elderly parents, we need to force ourselves to continue to do the things that make us happiest--and regularly, whether it's an occasional massage, a day shopping with friends, or a walk on the beach. Earlier this year I had stopped taking a day off now and then, and oh boy did it eventually catch up with me, emotionally.

Also, are there any private respite care homes in your area? If hospice turns out not to be an option, she could still go to respite care on weekends (or longer) and be cared by home health aides and certified nursing aides, in order to give your dad a break. We have one in our area that I'm planning to tour tomorrow. A lady at my dad's adult day care told me about it. It's in a private home, and they provide personal care, laundry, meals, activities as well as medication delivery. A family member can even stay there overnight with their loved one, if desired.
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Let me clarify... Hospice would be for your Mother. She needs more help than your Dad can keep doing. I'm sure it's really hard for him emotionally, even more than he lets on because he loves her so. Nothing will change unless you get help. Get some for yourself here to by venting if you need it.
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I agree with Lilliput. Contact Hospice. Make it about your Dad's health instead of hers. If your Dad is doing all that for her now it won't be long before he ends up in a serious way himself. If he has any of his own Health issues get his Doctor involved as well. Talk to her alone when you tell her this because if your Dad is in the room he might just go along with her denial. I'm sorry you are going through this and it will get better just get some help. Keep asking and asking until you get it.
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I am afraid that it is time for some "tough love." Your Dad gave it his best and it just did not work.
Every parent on this site has resisted outside help at first. But if you introduce caretakers slowly she will get used to it.
Have you contacted hospice? I am sure that she would qualify. They provide an aide and nurse as well as any equipment she may need. The nice part is that hospice can take place anywhere. (I would highly recommend getting a referral for the hopice company - they are not all alike. Then talk to the director and ask about what type of care they provide. You will be able to tell by this conversation, how responsive they will be.) Hospice is for end-of-life care, so she will be switched from reg. Medicare to hospice (or "comfort" care.)
Tell your Mom what you wrote here and that your Dad may be in danger of becoming ill too. Tell her that if she has caregivers come in to do the work, she can have more quality time with your father. Maybe if you make it about him, she will not feel as "helpless." I forget, too, how hard it is to lose both mobility and independence.
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