Long Distance Caregiving with my Siblings.

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I have to say - I was so relieved to find this site. I am the oldest of 4 children (I am 54). I am currently iving in England with my English husband (I am American), and we do plan on moving back to New York. I have lived here for just about 5 years now. When I moved over in February of 2008, my mother was in fairly good health - she suffers with atrial fibrillation, an issue with her heart rate. She takes medication for this and seems to be doing well on it. She is also on Coumadin as a blood-thinner to prevent blood clots. Last July (2011), my mother was diagnosed with breast cancer that had spread to the hip bone and to the breast bone. She is currently taking Femara (as her breast cance is estrogen-receptive) which does appear to be keeping the cancer from spreading any further. I spent most of last summer in New York, having taken a leave of absence from work. I researched everything I could and found a top-notch oncologist for her - we went together, she and I - for all those awful, terrifying preliminary PET scans and advanced mammographies. Needless to say, the news was not as good as we had hoped. Flying back to England was the most difficult thing I have ever done. While I was in NY, I set up a binder of all her doctors, medications she was on, and upcoming dates for appointments. I entrusted this to my sister who lives about 2 blocks from her in NY. My brother lives in New York, but seems to be unavailable or disinterested for much of the time. My other sister lives in Florida, and is currently up in New York, visiting and assisting with doctors' appointments, etc. The concern I have is that I am trying (as the oldest) to keep the peace amongst all of them as best I can. There was a tremendous argument last night at my Mom's house between my two sisters because of my brother possibly cancelling an upcoming appointment for my Mom, again. This, understandably, set off my sister who lives in NY and the end result was that all were upset, particularly my Mom, which is what angered me.

Being so far away currently, I feel tremendous stress and sadness and have tried to call all 3 of my siblings to "take a pulse reading" of where they each were, and to encourage them to work together with my sister in New York, as she has been complaining more and more about all the responsibility falling on her and is quite angry and resentful with my brother, who is right there and yet does not seem to be too helpful, and I think she is angry with both my sister in Florida and myself. We were on the telephone arguing (well, I was listening to them argue) until about 1:00 a.m. UK time. As a result, I am both physically and emotionally exhausted and was not able to go in to work today. One of the biggest issues is that my sister in New York and my brother (in NY) don't seem to speak directly to each other - and, amazingly, I see a lot of childish behavior appearing in that my sister wants people to "take her side" on things. God forbid if you are not angry with my brother, because she feels that you don't understand the stress she is under. I ask her to try to let it go about our brother, because this fighiting is only upsetting our mother. I also tried to make her see how difficult and painful it is for both my sister in Florida and myself to be so far away. We are very involved and try to do whatever we can from the areas where we live - calling doctors, calling our Mom every day to offer support and encouragement, calling pharmacies, etc. I just can't help feeling that it's becoming a kind of competition amongst us, which upsets me, as I think we all do help as best we can. As far as my brother is concerned, my sister in NY wants me to call him and lecture him on how he needs to step up to the plate and do more to help. I have tried this, but nothing works. I don't know what else to do until I can get back over there. I am absolutely heartsick and worried about my own health now, as I do suffer with IBS and anxiety. Any thoughts or suggestions would be really appreciated. xx

8 Comments

What I'm hearing is more common than you think and the expression "one mother can take care of 10 children, but 10 children can't take care of 1 mother" comes to mind. As an occupational therapist in Florida I see it all the time with a mother or father living here and the kids living up north. This is part of the reason my brother and I started our company Bubbie's Health for the children of seniors to take care of their parents incontinence supplies and durable medical equipment needs from a distance. You and your siblings may consider using a Geriatric Care Manager (GCM) to keep the peace and provide the necessary guidance and advocacy for your mother. A GCM is typically a nurse or social worker by profession and is more objective in one's care than most family members are able to be. They can help arrange for the mechanisms needed to provide the best care. Likewise, a GCM can serve as a conduit of communication between family members and anyone else involved in a person's care. Finally, a GCM can help you keep the peace between you and your siblings, which will make your mother happier and be better in the long run, because once your mother is gone, your brother and sisters will still be there.
I agree with BubbiesHealth. If your mom has the funds (or you do), a GCM may be just the peacekeeper your family needs. This must be so painful for your mom; to be suffering through her illness AND watching her children bicker.
Your NY sister's anger is probably less about feeling your brother won't help and more about their lifetime relationship. If your brother did step in to help, it would likely anger her more (as it did when he meddled in the appointment - it may have been his bungled attempt at help). They probably couldn't ACTUALLY work together in caring for mom. It sounds like your sister just wants her siblings' complete and constant acknowledgement and gratitude that she is the one making the greatest sacrifices for mom. And, even if you all convey that, I have a hunch it wouldn't be enough.
A good GCM could be the boss and the mediator in the situation. Obviously, they won't be able to solve all the sibling issues (those took a lifetime to develop), but can certainly improve the situation with regard to mom's care.
Protect yourself. You've done and continue to do plenty to help your mom. Don't let your siblings reach across the ocean to make you their whipping boy.
Welcome Mm. I too am a distance caregiver, though the distance is not as great and my mother is relatively healthy, other than sufering from Borderline Personality Disorder and narcissism. She is 100, and I am 75 and i struggle with my own health issues too, so cannot give "hands on" care, She lives 5 hrs drive away in assisted living, I am in Canada and my only sibling (sister) is in Scotland.

I have to agree that the problems between your sibs are more to do with their ongoing relationships than the actual situation at hand, and I can see that it is very distressing for you to know your mother is being hurt by the bickering. You cannot control their behaviour, nor can you "make" your brother step up to the plate and be more helpful. I have POA as my sister, though older, does not help. This is the pattern of years.You will find other cases of dysfunctional siblings, and families on this site. I have accepted that is how she is, and do not expect anything of her, but I do set boundaries to protect myself from abuse, and I think it would be wise for you to do so too. I refuse to get into arguments, and hang up the phone if she gets crtitical.
Mother has several people she hires to help her. She still very much is in control of her own life, is capable and wants it that way. That is where our situations may differ. The main people who help her are 1) an ex nurse who runs a senior care agency who does shopping and other chores for her. When mother had a hip replacement last year this lady looked after her until home care kicked in. 2) the director of the ALF she is in is a good resource in terms of seeing that she gets good care there, and resolves any problems with the staff. 3) her doctor has given her home care for life - she gets an aide in 4 x per day to make meals, clean up, help her dress etc. 4) she has found an excellent cabbie who looks after her when she goes to the doctor, he waits for her if necessary, makes sure she gets to where she is supposed to , and doesn't overcharge her - he is a godsend 5) I keep an eye on her from a distance, and come down, as the past few days to intervene if I feel it is necessary. If she is admitted to hospital, the ALF and the hospital call me.

My point is that others can fill in for you/your siblings. It is not good for your mother to be in the center of sibling fights. This kind of stress will affect her health, and your sibs need to know that. It sounds like, in the present situation, you are doing all you can.

Do any of you have POA? Considering your mum's state of health it would be wise to get POA, and other paperwork in order. Others here, or a social worker at a hospital can advise you what is needed. If one of you has the authority to act on behalf of your mum it may help a little, Though I think a geriatric manager, is a good idea, I suspect that even broaching the idea will bring on the strife, as your sister in NY seems to be very controlling, However, your sis in Florida and you are on the same page, and since your brother doesn't want to become involved, you may have the majority. Your NY sister is close at hand so the dynamics are difficult. I think you have to accept that she is going to complain no matter what. I think also it is part of how she is coping with your mum's illness, and probably there is not much you can do about it. Do you think your mum would go along with the idea of a GCM, if it was explained to her that it should ease family relations. My belief is that the person being cared for should have a say in what happens, as long as they want it, and are mentally competent.
My heart goes out to you - i agree - do not let your sibs make you their whipping boy. Set some boundaries, don't take sides, look after your own health. Caregiving close up, or at a distance is stressful. You already suffer from IBS and anxiety, and stress exacerbates both of those. Figure out a plan of action - what you can reasonably do - don't let guilt, or your controlling sister, drive you (so many caregivers suffer from guilt), and be sure in all of this to look after your own health. I am so sorry that your mum has cancer. That in itself is stressful.
((((((((((((((((((hugs))))))))))))))))))) Joan
sorry - I see i have been repetitive is telling you to look after your own health. However, it does reflect what I feel. If you get sicker you will be less able to help your mother. J
Family dynamcs! I too shared long distance caregiving for my Dad and his wife - who has dementia. Not only with my older sister, but with th 4 children of his wife. Dad was married at age 76. All of the children live in different states.
The first step is to accept that all people are not cut out to be caregivers - your brother. He may be better suited to hwelp by doing home repairs, financial planning, insurance issues, legal support or just be the one who takes mom out to dinner now and then simply for fun. Asking for something he is unable to give only causes stress for you and guilt for him.
Sort out amongst yourselves which things each of you can do - then delegate and support each other. Your sister in NY needs a pat on the back now and then - but not second guessing what she is doing. Ask her specifcally what she needs from you - phone calls, purchasing items that you can have shipped to your mom, phone conferences with doctors. Time your visits with your mom, so that NY sister can get time to herself.
Get POA - more than one or all of you can be on this. se an Elder Attorney.
Also get everyone on her HIPPA form at every doctor she uses = that way you can speak with the doctors - you do not need POA for this.
Her doctor may be able to order physical therapy or occupational therapy or home assistance for her.
CONTACT THE SENIOR SOCIAL SERVICES IN HER TOWN - THESE FOLKS HAVE RESOURCES AND ANSWERS FOR THINGS YOU DON'T EVEN KNOW YOU NEED. That can be done from anywhere in the world, and help you all focus on your mom, and not your own differences.
Lastly - know that each of you are doing your best and love your mom. Sometimes you have to accept that one will appear to do more, but all of you share the same concerns.
So sorry, what a lot of stress. I like the others suggestions. A GCM?-realize this may upset sister as she seems to feel she is performing this role & will view this as stepping on her toes. Sib's?: develop a mantra- "let's focus on reducing stress for mom" or something that addresses ur concerns and redirects the focus off the rivalry & back to helping mom cope. Have a discussion w each about your concerns ahead of time, before beginning use of the mantra. When things get off track, use the mantra to help you maintain a healthy boundary and help lead family back to mom's needs. Surely each of you are struggling with fear about the loss of mom and what the future will look like. My personal experience is that banding together against the common enemy (in this case cancer) may help you come together better and form a base from which your family can begin to redefine itself. Sadly, U R working together better than many families do-try to celebrate the small positives as much as possible and give next door sister as much positive reinforcement as you all can. Do find the things that brother can do to help, whatever that may be. I hope you can all pull together for mom and each other as you face this tough time. Also, SUPPORT GROUP for everybody. My sister's husband has cancer, she found a great wellness center w cancer support services that has been a lifeline for her. This site has helped me preserve my sanity as I care for mom w dementia 8 hrs away from other family members. Encourage them to get individual support and work together for mom.
Thank you all so much for you informative and kind words. Because of all of you, I don't feel so alone. Big hugs.
do come back and let us know how things work out ((((((((((((((((hugs))))))))))

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