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Exactly, sorry OP there is no such thing as a long distance caregiver. You're either there in the same location or you're not a caregiver.
This is not true, and it is unnecessarily hard on the OP. I was and considered myself to be, a long distance caregiver. But I paid bills, communicate with my mom, and visited twice a year. However it is impossible to do what the OP has been told she is to do under the circumstances she/he is operating.
I can only think of somehow insisting on a line of communications to your mom's doc. I realize that you have not been able to do this so far. You might try talking by phone to a case worker with the local (to your mom) dept. of aging. You can find the number online usually. I'd explain the problem to her or him and see if they have a suggestion for you.
If this fails, and you are not able to get the doc to communicate with you (as I said before, I imagine they don't have a procedure for doing this) then you simply have to tell your sib that you cannot do this, and why. It is terrible, I know. But it seems to me it is better for the sib to know this, even if he or she refuses to take further action, than for he or she not to know it.
If your mom has a crisis, whose number will they call? Yours or your sib's? Surely they would want to call the local number. It will be easier for the local person to handle communication.
Another thought is this: does the doc have necessary paperwork on file for you to receive communications?
I know that we have suggested things that you find impossible to do. But you seem to be in an impossible situation. I don't think there is a magic formula for this. Do call the local dept of aging though. Try everything you can, before telling your sib that you are not able to do this for your mom. You might want to have legal help in drafting a letter saying you cannot be responsible for monitoring your mom's care. (What good would it do anyway, if you are not communicating with your sib?)
I think we have given you a lot of ideas. You are just choosing to complain and not consider them. I'm sorry to hear you have suffered a lot with your health. Remember -- we are actually trying to help you.
There is no easy answer. You have to make the best of it.
Plan your next visit when she has her doctor's appointment. Skip the holiday. The doctor's appointment is more important. Shoot.... Just schedule an additional doctor's appointmen for whatever week you go, at your convenience.
Then again, your Mom is 95 and from what you said.... she doesn't need another appointment for 6 months ...... According to her doctor who knows her well and has taken care of her for decades. That means your Mom is doing FABULOUS! Maybe you just should let things ride. My father is 72 and has a doctor's appointment every week. Do you realize how well she is doing?! She is a miracle, actually!
It is hard dealing with doctor's offices. No doubt. You simply have to be persistent, and polite. Call the physicians assistant after each visit to get the results. Ask the doctor's office to ask the doctor to routinely send you a copy of his note after each visit. Ask the ALF to send you a copy of the doctor's orders/note after each visit, to be sure you get it. And call the nurse at the ALF every month to hear how she is doing.
Other alternatives?
Move into your Mom's ALF. From how you talk about your severe disability, maybe you need help?
Move close to your Mom.
Move your Mom close to you.
I still recommend an in person family meeting.
Sorry if you don't like your options, but there they are. Changing to another doctor will not solve your problem.
This is not true, and it is unnecessarily hard on the OP. I was and considered myself to be, a long distance caregiver. But I paid bills, communicate with my mom, and visited twice a year. However it is impossible to do what the OP has been told she is to do under the circumstances she/he is operating.
Sorry that is not caregiving, that is managing from a distance. I spoke with a woman once who told me she was a caregiver. She thought calling her mother who lived in another state twice a week was caregiving, no that is checking in with your mother.
To be a caregiver you have to be in the same location, you even said that in an earlier post yourself.
Quote:
Originally Posted by sfcambridge
I think we have given you a lot of ideas. You are just choosing to complain and not consider them. I'm sorry to hear you have suffered a lot with your health. Remember -- we are actually trying to help you.
There is no easy answer. You have to make the best of it.
Plan your next visit when she has her doctor's appointment. Skip the holiday. The doctor's appointment is more important. Shoot.... Just schedule an additional doctor's appointmen for whatever week you go, at your convenience.
Then again, your Mom is 95 and from what you said.... she doesn't need another appointment for 6 months ...... According to her doctor who knows her well and has taken care of her for decades. That means your Mom is doing FABULOUS! Maybe you just should let things ride. My father is 72 and has a doctor's appointment every week. Do you realize how well she is doing?! She is a miracle, actually!
It is hard dealing with doctor's offices. No doubt. You simply have to be persistent, and polite. Call the physicians assistant after each visit to get the results. Ask the doctor's office to ask the doctor to routinely send you a copy of his note after each visit. Ask the ALF to send you a copy of the doctor's orders/note after each visit, to be sure you get it. And call the nurse at the ALF every month to hear how she is doing.
Other alternatives?
Move into your Mom's ALF. From how you talk about your severe disability, maybe you need help?
Move close to your Mom.
Move your Mom close to you.
I still recommend an in person family meeting.
Sorry if you don't like your options, but there they are. Changing to another doctor will not solve your problem.
Some great suggestions. I also wonder how the OP talks on the phone to this office, you know if you're extra polite and clearly explain your limitations they may be more forthcoming. Appeal to their empathy.
If you call up demanding information and to them your just a voice on the phone they have never met in person, they're leery. Talk to anyone who works in healthcare from nurses to CNAs to office managers when they never see an adult child in person they wonder why not.
But I agree an in person visit is needed, if the OP could travel for holidays to get there, than they can get there to help make this situation smoother.
Sorry that is not caregiving, that is managing from a distance. I spoke with a woman once who told me she was a caregiver. She thought calling her mother who lived in another state twice a week was caregiving, no that is checking in with your mother.
To be a caregiver you have to be in the same location, you even said that in an earlier post yourself.
Some great suggestions. I also wonder how the OP talks on the phone to this office, you know if you're extra polite and clearly explain your limitations they may be more forthcoming. Appeal to their empathy.
If you call up demanding information and to them your just a voice on the phone they have never met in person, they're leery. Talk to anyone who works in healthcare from nurses to CNAs to office managers when they never see an adult child in person they wonder why not.
But I agree an in person visit is needed, if the OP could travel for holidays to get there, than they can get there to help make this situation smoother.
I learned when I consulted information put out by the Alzheimers' Association, that I was indeed a long distance caregiver. This is not how I would have originally thought of myself.
But we agree that the OP cannot do an adequate job at a distance, and with the physical limitations. I don't get the impression that the OP was all that demanding, but that the doctor's office couldn't seem to figure out that she needed to be kept in the loop. This is a difficult situation for the OP.
Yes, I agree that there is such thing as caregiving from a distance.
In our caregiver support group we have a few folks that do this. Usually their loved one lives in a facility. They often carry a lot of guilt, I find..... but fewer time/financial sacrifices, of course. All are different in the support they give. Some do a lot of phone calls, some visit frequently (which can sometimes create a lot of problems with their work/family life) etc.. In our family one brother who is the long distance caregiver (and who I wish did more....) and calls my Dad 3 times a week for well checks, does the financial management/taxes, and brings the only grandchild for visits and fixes household problems when he
But as I said before.... you cannot manage the medical problems from a distance.
As you are learning, you cannot manage her medical care from afar. Impossible. I don't think it is realistic in this day and age to expect the doctor to personally call you with the results of every appointment. In my experience, we are lucky if a nurse even calls back when my Dad has an acute problem, and a doctor never does. The fact that the doctor at least tried to call multiple times is a miracle to me. But honestly, your sibling should be taking her to her appointments at this point. The other option is you hire someone a bit more competent to go with her to take notes and ask questions.
You also need to call the clinic and make it clear to the office and nurses that you are the primary contact for all medical information and plans. Make sure the correct phone numbers are everywhere. Also, ask if the doctor can send you a copy of the clinic note at the end of each visit. This is allowed. Honestly, I recommend that you fly out there at some point and go with her to a doctor's appointment so this is absolutely clear.
I think it is time for a family meeting. You need to go out there and meet with your Mom and siblings, while you Mom can still clearly express her opinions. Not only should you clarify her goals and preferences if she has any, you can attend a doctor's appointment with her and address all of your questions about her diagnoses and prognoses.
And my goodness.... do not take away the doctor that your 95 year old woman likes and has been seeing for years! Obviously, they have done pretty well so far.
I'm a now retired RN who may just renew my license to see IF I can make a retirement living by offering this kind of 'service' to other families going through what you are going through. I have a diverse knowledge base after 38 yrs as an ER RN. It would benefit me
and families like yours! The 'roadblock' might be HIPPA rules and sharing information between family members, etc.
I am in 100% agreement here, with sfcambridge, that this can no longer be handled long distance. It sounds like there is something else, between you and your sibling going on, but not clear as to what. I have 3 such siblings, so I know well all the dynamics that different personalities (and esp one who controls the $$$) adds to all of this. My Dad is 85 and still 'runs the show', but the one person who is constantly 'stirring the pot' with him (for his own personal gains) is the one least able to take good care of Dad and who obviously has him 'under his control'...tho' miles away.
My best suggestions: Take a trip to the city your mom is in and make pre-planned arrangements to have a 'big pow wow' with your Mom, sibling and the Main MD AND maybe his office manager or a RN who does discharge planning for his patients?, so that your calls no longer get 'misplaced'. Most offices these day have only ONE OR NO Registered Nurses working, as MOAs are more cost effective in them. Not an affront to anyone on C/D who is a MOA, I promise.
Make certain your Mom signs the HIPPA forms stating who may have access to her medical information. Make sure NOW that she gets a POA...at least a MEDICAL POA, for future HIPPA issues, ETC, and that in the big pow wow a DNR status and the paperwork regarding such is discussed. DNRs can always be 'taken back' (retracted), but when you don't have one and something bad happens, like she falls and hits her head and is brain dead, OR many other things, it has a purpose. It's just time to do all of this...esp with her short-term memory getting 'iffy'. It will be worth your time and cost to GO and DO this. IF she balks at all of it and nothing changes, then at least you tired and you can move forward with your life. PLEASE, leave her with her beloved MD of many years, that knows her!!! I find many older doctors still DO make calls after hours to their patients, but that is still not a large number in these times.
Drop me a note IF you think having a RN that co uld at least sit in on the medical appointments with your Mom or any family member far away,would be something you would be likely to use IF it was available nationwide. I'm truly curious about such being available.
IF anyone else, who reads this post has thoughts on this type of 'service' IF it was available, please DM me your thoughts. I am SO aware of how far family members get distanced these days and I would be thrilled to help and keep my own brain on track for another 10-20 yrs. I stay involved with Medscape Nurses on all types of subjects, just because I am one that will keep on learning no matter how old I get and I like to keep on top of current treatments, for me and mine, too.
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