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My brother is a research scientist and he sets up medical appointments whenever he wants to see his mother. This means that I drive her down - take a day out - so he can visit and Mum and Mum gets more exhausting tests - which confuse her for days. Tests that never until last week relate to her memory loss or dementia, he is in denial of this. Two weeks ago I get a call from my brother saying Mum has blood loss somewhere because her iron is low - so I go through all her pads. The week before she might have a bladder infection - so I put her on antibiotics (every six hours first day) then two every night. Four days later he phones up saying he's very worried it looks like her creatinine levels are high or low - I can't remember. Its never ending - he just makes appointments - and he does not even need to leave the hospital - as all the appointments are at his own hospital. I was breathing so heavily - as two days ago we went downtown (2 hour drive there and four hours to get back) for an MRI and he talked to the Neurologist when I was caring for Mum - did not invite me into here the results with the Neurologist - and no word on Vascular Dementia - just something about having some recent neuropathy. Nothing else. He does not help out with Mother's care in any other way. Mum is very clear she does not want to go or be with her other children that she loves - but does not want to live with. Somehow this has created sibling rivalry - when my Brother mentioned that there was sibling rivalry - now after all these years of my caring for Mum - when my partner left partly because of the full time demands of caregiving for someone who wasn't her Mum, for giving up work opportunities so I could work from home to care for my Mother through dementia (stage 4 or 5 - by my assessment), with no recognition of the demands, and no financial support - that he can well afford - to find out he feels sibling rivalry - I just wept and wept over the phone - in the fetal position on the floor - like I never had in my life before - because two weeks before I'd taken Mum to his place for 4 days for his birthday and so Mum could be with her grandchildren and so I could keep mum in as familiar routine with her principle caregiver. This was not even something Mum cared to do - but just to be of service to the whole family. I have done this for years - and now I'm in need of support - my sister and brother are not there - in fact they are more demanding than ever. I have never felt so angry and disappointed. I would find it easier to have them out of my mind and life - and just get on with my life - and new endeavors, relationships and find solutions for a more balanced life while going on the journey with Mum to do everything I can to keep her the SWEET person she is - and happy. She is now singing most of what she says - and trying to rhyme - I asked her why - she say because I make her so happy that she wants to sing all the time. This is so precious - and in this I'm lucky - and grateful - and I guess this makes my brother and sister jealous. But it has taken real sacrifice for me to bring my Mum to , and for a while I've been sacrificing even my stay at home work to provide full time care, cleaning cooking, entertainment and everything else - and I'm getting angry very easily.
Ok, I guess I mentioned my sister, to get a fuller picture. My father was a alcoholic throughout our childhood, my brother was 19 years older and was in Oxford getting one degree after another, while Dad got kicked out of Australia - yes - but that's another story - then from one province to another until we ended in Edmonton on Welfare. My sister Caro has not recovered from this and of course the shadow of it runs through our family - and I've spent much of my life exploring how to straighten this out and live without co-dependence etc, etc. And here I am now - how amusing at some levels. ;-) However my sister has not self-examined her life. I used to help us escape from Dad and she was simply afraid more often - and had abuse earlier in her life - so I understand that it makes her emotionally driven. Its a two hour drive as she is well out in the country - I'm at the edge of Toronto in the country - between my Brother and Sister. I made one condition for my sister, that she would let me know in advance of her coming to visit Mum - so I could schedule shopping or visits to friends etc. In three months of say 20 visits she has called me say 5 times - only on one of those five time did she actually come down on the day she stated. Today she was waiting at Starbucks at 8am - and asking me to pick her up - she came spontaneously as her dog just died - which he did - and so I brought her here and will again need to drive her back. However she has a crisis each and every time - a headache and a very good reason - as her life is chaos. How can I have a heart with all of this? Live my life and provide the best care and love for my Mum? Not sure I know the way through.

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I also had every meeting or question for Dad funneled through me. it was stressful, and wasted my time. Taking care of dad wasn't stressing me out Handling matters for siblings who dumped all the work on me was. So i stopped. my one sister is cut off completely. If she wants something from Dad, then she has to come visit. I blocked her calls and emails. Same for Mary, those that help I bend over backwards to assist. When Dad's time is up, I won't inform them. They are on their own.
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Set boundaries. Tell both that with the care she needs, best time to call is between x hours and on x days. You have your hands full with her care and aren't obligated to accomodate them at their whim. If you are feeling generous, you can schedule a once a week on-line chat with them or you can start a blog and give them updates on mom's week.

Step one (as suggested earlier): Make sure all the legal paperwork is in order. You may also want to have discussion (unpleasant as it is) for some sort of compensation if her caregiving becomes more demanding to where you are her full time caregiver and give up employment benefits that others (including your sibs have access to) such as insurance, retirement, wages, etc. An attorney can help you with this.

Step Two: Stop driving her down to see all these people. If they want to see her, they should take time to do so unless it is a very special momentous event that your mom is willing and able to go without getting worn out or disrupted. Surely, anyone can understand that these can be very tiring events for the loved one and the caregiver.

Step Three: Might be a good opportunity to make some suggestions on how they can really help:
1. Come for a visit with mom
2. Contribute financially, so you can hire some outside help a few hours a week.
3. Contribute financially by paying for some of her needs such as meds, diapers, clothes, etc.
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Nope, I don't answer the phone when I don't want to, that's what e-mail and answering machines are for. Do what you can; don't stress yourself over the rest. I agree with the responses about getting more help from the rest of the family.
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I like Rebeccas plan of getting brother to do some of the leg work and not just the easy part for him that he probably just does on-line in two minutes while eating lunch. If I have any idea what he's feeling and thinking, I imagine he thinks he is being a Helpful, Loving Son. I'm a physician and can also plead guilty to over-medicalizing my Mom's decline and wanting to change meds, try meds, try more rehab, etc. etc. and it was often good and sometimes bad for her. It did get her on Sinemet instead of just fussed at by people who thought her retropulsion and tremor were just put-on, it kept her out of a gero-psych when she was actually having a heart attack. And it got me the two letters I needed for her incapacity when I needed that. But yeah, it was also part of my denial. But it also got her some side effects and delayed my coming to realize that there was nothing we could do to really make it better.

Its hard. Somehow you got blessed with being the strong, competent one. Which means, unfairly, that it is up to you to orchestrate things; that might need to include a family meeting where people get informed and shown what it is really like day to day and told what they may and may not do. You can most likely call and cancel/reschedule appointments that are not going to help you or Mom, and insist brother expalin in plain English why he thinks this is really important and can't be done any closer to home if you are going to keep them, and absolutely HE needs to take some time and transport her and/or AT THE VERY LEAST keep you in on the conversations with the doctors, because you are the one seeing her day to day, and seeing her as a person with real needs and not an interesting case. You don't need to end up curled up on the floor feeling emotionaly shredded and stressed out because you can care for mom as well as possible OR do everything they think you should do, but not both. Look where its coming from - the sister who can't manage to organize her life and floats from crisis to crisis, and the brother who escaped to the ivory tower. YOU are the one with an anchor in reality.
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MarkJohn, I do not know how old your Mother is or how old you are, but first I would tell the brother: look, Mother is x years old. Yes she is going to have more problems, if you don't know that as a doctor, well, maybe you need to go back to school. She and I don't want the testing, plus it tires her out. But if you want to really insist on a certain test, well, then you come and pick Mother up, take her to the appointment and bring her back. I don't have the time. Maybe he'll start to get the picture. VW9729's advice on your sister was right on the mark. She's an adult. She has made her choices in life and she can deal with them. I'm sorry she had problem with an alcoholic father as a child but you did too and you seem to have more than turned out great. There's all kinds of help out there now days for people who had troubled childhoods, if she doesn't know that, then I take it she doesn't watch TV or read. You are doing a great job for your mother and that is your primary concern. As to your siblings, well, we can't control how anyone else acts or what they think. My one brother is great and supports and helps me when I ask. The other brother, well that's another story. He accuses me of doing all kinds of stuff I haven't done. I used to cry a lot about it because it hurt me, his charges against me, the loss of his closeness and what he thought of me. But then I said, no I cannot control what he thinks or believes. As long as I know what I've done is right and good, so be it. He can think what he wants. My other brother knows the truth. I have enough on my plate with taking care of Mother, without worrying what my brother things. I personally think he might be bi-polar. Maybe I'm like this because I'm 66, tired of putting up with crap and worrying what people think of me. You don't like how I'm handling things? Then you replace me; otherwise, I don't give a damn what you think. Five years ago, I would have felt so guilty saying that, but no longer. All that will matter in the end is what my Maker thinks about how I handled things. You're doing a great job for your Mother and she and you are the only ones that really count right now!
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I'm so sorry you're having to deal with this chaos. It is sad that siblings can be so selfish, and unfortunately the worse comes out when our parents get older - and especially if they aren't the actual caregiver because they have absolutely no clue how frustrating and thankless it is to be one. We cared for my mother-in-law while 4 of her other children did nothing. They were either too busy or didn't care what was going on with her. We tried for years to keep everybody happy and harmoneous, but had to finally give up and do what is right for our mother-in-law and especially us - since we were the ones doing EVERYTHING every day instead of once a month or whatever. We decided they were adults - if they wanted to know something or wanted to visit her - they could call us and see if it fits in our current schedule - not the other way around. So in my opinion, you need to start setting boundaries and stick to it. It is not your responsibility to ensure your sister sees your mom. If she wants to see her, she can figure out a way to do it - she's an adult. You shouldn't have to go get her or drive your mom to wherever she is so they can visit. She can come to the house like she should if she really wants to visit her mom. And I definitely would not run your mom to every appointment your brother sets up - especially if he isn't including you in on the results. But what I definitely would do as soon as possible if you haven't already done so is ensure your mother delegates you on paper as her Durable Power of Attorney for Healthcare and Financial. That way when your brother calls for yet another appointment for your mom, you can politely tell him that it tires your mom out too much to run from place to place, that she just wants to go to her primary care physician for when you or she knows she needs to see a doctor for a problem - not just be tested for whatever whenever. And hopefully he will quit scheduling her for these unwanted testings just because he can. You are being a wonderful caretaker of your mom, and being way too nice to siblings that are taking advantage of you. Please take care of yourself first - so that you can continue taking such great care of your mom. Good luck!!!
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