Hello, I am a 22 year old granddaughter in college about 2 hours away from home. My grandfather is in the later stages of Parkinson's and is currently being treated in the hospital for a high fever that simply won't go down. My grandparents are fiercely independent, even though my grandma clearly cannot be my grandfather's primary caregiver anymore. She's recently allowed a paid helper to come 3 times a week, but that is not enough. She'll throw her back out just to keep him in the house, which is outfitted with numerous lifts, handles, chairs, etc.
My grandfather will also do and pay anything to stay in his house and avoid nursing care. He knows this is a burden on my grandmother, although she accepts the caretaker role. Now that he is incoherent in the hospital he is having less a say in his caregiving. He's been in the hospital for over a week, only sometimes lucid. I think this spell has convinced him he needs more care help, one way or another.
Now that he is in the hospital and his health is declining even more, my mother and aunts think it is the time to talk about nursing care, DNR and patient's rights issues. My grandmother either won't knowledge the conversation or goes into shock. She has yelled and forced them out of the room, too. My eldest aunt stays at the hospital sometimes 12 hour days while my grandmother can't seem to get to the hospital before 1 or 2 pm. My mother expressed concern that she is drinking until late hours or doing other harmful things to cope with the stress. Nobody knows for sure what she does at home, but she is physically able to wake up before noon. It stresses my grandfather that she is never there when he wakes up.
Ultimately, my question is how do I take on an active role in this situation? My mother is on a business trip all weekend and asked me to take her place. I'm coming into a hostile situation between the elder aunt and my grandma. I am particularly close with my grandma, so she thinks I might be able to convince her to have the serious conversations with my aunts. I know my grandma feels helpless and angry with this power struggle, but it is a whole lot easier to figure these things out now instead of later when his health could be even worse.
I don't know how to speak to my grandma, to tell her that I'm here for her as well, and that we need her to be strong right now. It's a shift from being taken care of to taking care of her. I love my grandparents very much and this is a situation I need help with.
A lot of questions deal with sons and daughters caring for elderly parents or see grandchildren as young and essentially bystanders in the care process. Hopefully this situation will warrant different answers.
You know what they say about history repeating itself? About a year ago when my mother's health declined, my siblings and I couldn't agree on her care, and it has caused some strained relations with my family.
My advice concerning your grandparents is to give them your love, time and attention but don't be involved in trying to fix things or make decisions. That IMO is not your role. That is the responsibility of your aunts & uncles. Spend time with your grandparents, especially your GM, away from the medical atmosphere and the elder aunt. Enjoy their company and listen.
Observe what goes on with your grandparents and aunts & uncles. Take mental notes concerning what you don't want to happen in the future concerning your parents, their care, and your siblings.
But I would avoid getting involved with the cat fight. If the aunts & uncles and your GM can't agree, another person and another voice would just add to the caustic atmosphere IMO. If they aren't listening to your GM, I really don't think they would listen to you. I would stay out of it. Be a friend, a sounding board and a loving granddaughter...but I wouldn't attempt to be a peacemaker.
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Your grandparents are fiercely independent. Our culture has strong tendencies in that direction. We admire and praise independence and worry about people we perceive as too dependent on their spouse or on their parents, etc. Loss of the independence is felt keenly. People who have lived together as long as your grandparents have also become very interdependent. Poet e e cummings has a poem that starts out "one’s not half two. It’s two are halves of one." I think this is even more applicable to couples that have been together a long time than to honeymooning couples.
So the discussions and concerns about making decisions for Grandfather are also about making decisions for Grandmother. She is half of that unit, and whatever decisions are made will impact the rest of her life, too. It is good that you are close to her. Grandfather has doctors and nurses and daughters looking after him. You can focus on Grandmother, to make sure she knows she hasn't been forgotten in this very difficult time, and that her needs are important, too. She isn't just someone who should be there when Grandfather wakes up, who should pull herself together for his sake. She is valued and loved for herself, not just what she can do for her husband. (I say this as a caregiver to a spouse. It is surprisingly easy to feel lost in the shuffle when all the focus in on the impaired spouse.)
Maybe instead of trying to talk some sense into her, your first mission could be just to make sure she has a chance to talk and to feel heard. She has fears and anger and sadness. She needs to know that family cares about her, too. She is half of this unit that is transitioning into a new situation. And it is an equal half. She needs to know that.
As to the talks about end-of-life measures, etc., in one sense it is already too late. The ideal time would have been years ago, when both of them were lucid most of the time, and neither felt threatened by the immediate situation. You can't go back and do it then, of course. And it should be done now. A health care directive should be in place for each of them. Perhaps if there is a draft filled out in accordance with what you all THINK Grandfather would want, if he has a long lucid spell it can be discussed with him, modified as to his wishes, signed, notarized, etc. But I don't see the urgent rush to do it now. If something occurs in the next few weeks where decisions need to be made, Grandmother will have to make them then. In one sense it is too late to be doing this, and in another this may be too soon for Grandmother to come to grips with it. Maybe she can handle one major trauma at a time more successfully than being hit with everything at once.
Meanwhile, behind the scenes family members can scurry around figuring out what the viable options are. Is more in-home care sufficient? Is it financially feasible? If placement is the best or only option, does he need a skilled nursing setting or something more like assisted living? Would assisted living for the both of them together be a possible option? How would these options be paid for? Is it necessary to apply for some aid, such as Medicaid? I wouldn't expect your GM to be able to research these things, and it may take several attempts to get her to even talk about them.
I'm glad you are planning to tell GM that you are there for her. Maybe your first mission could be just listening.
Hugs and best wishes to you as you embark on this very important support role.
Being in the nursing home was extremely comforting for him and for me as I was the only caretaker and he was failing. He was able to be at peace and comfortable and I was able to oversee his care. I realize it is traumatic for your grandmother to comprehend such changes; but maybe being the caring person that you are; you would be able to mediate and help them understand what is in the best interest of your grandfather. He will want to go home as he probably doesn't realize how sick he is. And it appears to be a huge strain on your grandmother. Maybe talking with her about the pros and cons of going to a facility will help her feel more comfortable and your grandfather too. God bless you and you will find just the right words to say - go with your instincts. Love and hugs