Why is it every time I go to my parents doctors thier grand advice to me is "wow you have your hands full" or "are you ready to give up yet. My wife and I care for both my parents full time. My mother has vascular dementia and is wheelchair bound and my father has ALZ and a bipolar disorder. For the past year and a half we have taken them to a little over 200 doctors appointments and the advice we always get is the same. "Give up". My parents have been married for 61 years and don't want to go to a nursing home. They are both enrolled in the geriatric assesment program and every time they ask me "Are you ready to throw your hands up yet" I have no help or support from other siblings. So when we go to the doctors do we look for support and advice.
My sister and I are dealing with the care of our mother, who has Alzheimer's, and we are arranging 24-hour care for her in her home. We will keep her away from a nursing home for as long as possible, but there may come a time when it is the only option. That is the last thing we want, and if that time comes, we'll feel terribly guilty, but we realize we cannot do everything for her at the expense of our own mental and physical wellbeing.
Our mother's doctor gave me a "care for the caregiver" talk, and was tactful about it, and I believe she was just trying to say that you should not ignore the strain that caregiving can cause in your life.
You are to be commended for taking on the full-time role that you have, and I know your parents must appreciate you so much for your love and dedication. But don't forget to care for yourself and the rest of your family. I hope you are able to take advantage of a respite care program or some kind of outside help to give yourself a break. You deserve it!
During her recent hospitalization, I filed a formal complaint against one doctor who said, in front of her, " She's too old and too sick. We wouldn't treat her anyway."
My message to every health care worker out there is "I hope you are treated just as you treated my mother, when you are sick and elderly." To the good ones it's a compliment. To the rest - I hope it will continously run through their minds, when they do become ill or require treatment for anything.
I also want to remind them:
If old age is a fatal illness remember that you already have been diagnosed with it, even though it may be in it's earliest stages.
Hey docs! We get it - certain illnesses are more likely to acompany old age. That doesn't mean the person is untreatable. It just means that you are unrealistic about the prognosis and are projecting your feelings of inadequacy on those of us who want the best possible outcome for our loved ones.
I am angry that so many people are more helpful if you want to make all the problems of caring for the patient to go away. There is far too little help and support for those who truly are caregivers.
I hope you will use this forum to gain support, adivice and encouragement. The world needs more people who care the way you do.
Right now, Mom goes to a geriatric doc who is a little better, but his mantra is "we have to do tests" even for minor things. So now, I have learned to determine when my Mom needs to see a doc and when she just wants the attention. I say no to invasive testing if it will yield very little info. I take her to a Naturopathic doctor who has done far more for her comfort than a tradtional MD. And I READ a lot...I am usually well equiped with info. before I set foot in their offices (especially regarding side-effects of drugs and interactions with her existing meds.)
Like you I will care for my Mom in her home environment for as long as I can - because that is the way she wants it. It is a lot of work, but she is happier, healthier, and more independent this way. She gets one-on-one attention from us and I have a paid caregiver come in once a week.
I, too, have doctors say, "why on earth is she living alone." I say, "she isn't alone, she is living independently."
Western medicine, IMHO, is limited. They are taught to look at patients as a bundle of "symptoms" that need to be cured. Naturopathy is holistic and looks at all aspects of the person: physical, mental, spiritual.
My advice to you is to limit your doctor's visits, if at all possible. They have no answers. The next time they say, "give up," tell them that is not their decision to make and that you would appreciate their support and guidance during this journey. If they continue to be negative, cut them loose. (I actually changed Mom's primary doc after calling her office and the nurse telling me to take Mom to the emergency room for a minor ailment. When Mom would visit thier office, the assitants acted like they didn't want to touch her. I finally told one sweeite pie that aging was not "catching" but definitely and equal opportunity event.)
I am not a fan of our current medical system. I find it tiring to try and find empathy amid traditional docs. So I ADVOCATE for my Mom and do what's best for her. I have one sib who is not at all interested in Mom's care...so I sympathize there too.
Good luck on this journey....I admire you both maybe because keeping my Mom out of "warehouses" is my goal too.
Take care...let us know how you cope with these situations, it is helpful to us here in the forum.
Lilli