I am the oldest daughter of my father who has multiple myeloma (IGG specific) and he is in the hospital with a breakage of his femoral ball and socket bone. My father is waking a little but he has lesions that make his bones brittle. He can barely get out of the waterbed and when he tried to do it his bone broke. He went over a week without going to the hospital. He finally did and they found out and immediately did surgery. He is recovering slowly and they want to get in home care and my step mom said she does not know if she want’s him to come home just yet because they are not equipped to handle him right now and I understand that. She really does not know what is going on because of COVID and he is isolated in the hospital and she can’t get a hold of his doctor. She called me tonight and she said they don’t know if there are any beds available for him because everything is booked and that she would have to have him sleep on the futon and would put a foam pad. I told her that he can’t do that that he needs a medical bed that can position him to be able to get out of the bed so he won’t break another bone as his bones are brittle. She became upset and got irritated with me. I asked her if she need me to come out to help get a room ready for him so he had a place to sleep (he can’t sleep in their waterbed) She said “no we have it handled” after she complained to me before that that they could not get anywhere to coordinate. I finally told her well I don’t know what to tell you I have offered to come out to get a room ready to help you and you don’t want me out there so I am not sure what I can do being 1700 miles away. My stepsisters have been trying to get a hold of the doctors but I told her that under HIPAA the doctor will not talk to them and she started to argue with me on that. Finally she said “If I really thought you needed to come out I would tell you”. It really hurt my feelings. That is my father and I would like to help but she has pretty much pushed me out of the whole thing and this has been a consistent pattern since they married she has always treated me like I don’t belong in the family and mostly her daughters and her ignore me all of the time and treat me like I am not part of the family. I am grieving because my dad is at the end of his life and I would like to be a part of it in some way to say goodbye and help him. I am pretty sad about this whole thing.
Are you able to speak to your father on the phone at all? Or to any of his medical team?
So your stepmother rang, basically, to give you an update. It's good that she is contacting you. That doesn't sound so much like pushing you out, though? On a practical level it's difficult to include you from 1700 miles away - it's not like you can drop in for an evening and bring a pie. Do you have HIPAA authorisation yourself?
If the plan is for your father to go home from his hospital stay, they will indeed need a hospital bed in the home. Is there anywhere for it to go? Just thinking about the futon plus pad idea - if there's space for a futon, there's space for a hospital bed, only they'd need to put the futon in the garage, or self-storage, or somebody else's living room. I seem to spend quite a lot of time these days wishing that families would let go of useless furniture, at least temporarily.
About your stepmother. She must be struggling and she's doing her best to work her way through this. Of course you want to be involved and of course you want to help. But reading through your post, you told her that the futon idea wouldn't work, and you told her that her daughters couldn't help her get hold of your father's doctors, and you offered to help get a room ready (how? - without needing accommodation yourself?). Try to avoid anything that sounds like back-seat driving if you can.
But do you *want* to go and visit? Can you do that without needing hospitality from them? What are the current Covid restrictions where you live and where they live?
Hugs to you, this is sad and worrying. I hope there's a positive plan very soon.
You say you want to help. I am going to tell you that from 1,700 miles away you can't do that. You say you have offered to come and help and they refused. Can you tell me why they refused? Were you going to move in with them to help? Is there room to do so?
It sounds to me that this is someone who now needs placement and that because of covid there is no way to do that. And they are up against it doing the best they can, and you are 1,700 miles away feeling helpless. So trust me, every conversation isn't going to be pretty. And that's OK. Things are messy. You have to speak with gentle honesty. There is not now time for anything else.
My advice? Call and say that you are so sorry. That you feel helpless to help. That you are so far away. Tell them that they should please call if there is ANYTHING you can do. Tell them you will come there, get your own room, arrange for delivery of hospital bed IF THEY WANT you to. Tell them you will order in anything from where you are if they tell you what they need. Tell them you will do EVERYTHING and ANYTHING in your power to help them, that you know they are up against it and frustrated, and cannot imagine how they are doing it. Because honestly, I cannot imagine how they are doing this. If you are able to help them financially then do this so they can order what they can find to help.
This is all so dreadfully hard, but one thing that doesn't need to be added into this mix is the angst of hurt feelings and criticisms. For Dad this isn't going to be good no matter what happens. There is no way to do what they are attempting to do with any perfection at all. I recognize so much frustration and pain all around. And am so sorry for it. But please do all you can not to criticize those doing hands on. In other words there is a world of difference between "That won't DO for a bed; he can't BE on a bed like that!! Don't you GET IT? His BONES will break" and "I worry for his comfort with the futon; is there anything I can order online to make it more comfortable? Is there anything at all I can do; will you call me if there is something I can do because I feel so very helpless from 1,700 miles away. You are doing heroic work. I am worried for Dad, and I just feel helpless".
Do let them know that if Dad cannot come home safely now that they do not have to ACCEPT him home; they can demand that safe discharge placement is found. They can say that they are not equipped and are not physically able to care for him. That may be the best that can happen here now. Dad does need placement. If he refuses and they refuse then they are stuck with making it as good as they are able. Who has POA here? Because that person would do well to speak with Social Services before any thought of discharge. I agree with JoAnn there.
So, your dad has made choices that have consequences. At this point it sounds like some pretty detrimental consequences. He made the choices, so he will have to deal with the fallout. He may have to have another broken bone before he decides to stop accepting her decisions for his wellbeing. But he will probably never accept your input, prepare yourself for another rejection.
I know how hard this must be for you, but I really do recommend that you step back and let them sort it out. That was his choice for all these years and just because he is now dying doesn't mean that he wants to be rescued from his choices. Come to terms with what is and say your goodbyes, if possible find a way to forgive him for letting you be pushed out of your family because he got another one. You will never have to see or speak to these people after he dies if you so choose. Do what you feel like you can without getting in the middle of their chit show and take care of your heart in this situation.
I know how hard it is to watch my dad suffer the consequences of his choices, but I have been burned one to many times to get involved again. I do what I can and let the rest go. I hope that you can find a way because it is not going to help you to argue with the people that he has chosen to be his close family.
Hugs! It will be okay.
She did nothing wrong in trying to get the right kind of bed for her dying dad. Sheesh.