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?
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.
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.
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.
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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