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KittyJo Asked February 2014

How do I continue to feel like I am of any value in the care of my Mom when I find obstacles in front of me?

I joined AgingCare 4 years ago and only posted one concern. I told my only sibling about this website and he said to stay off of it, that it is no one's business but ours.

Now 4 years later, my mother has been showing signs of increased dementia. She was in an Assisted Living wing of a rest home, but because of knee surgery and complications following the surgery she was transferred to the Total Health wing and remains there today. The goal was to provide physical therapy to get her back to the room and friends that she loves in Assisted Living.

Lately, however, my brother and I have noticed an increase in imaginary events that she is reporting. My brother was immediately ready to close her Assisted Living room down and keep her in Total Health. At the beginning I fought for my mother to return to Assisted Living, siting that many of her friends also displayed signs of confusion. However, lately these imaginary events have increased to the point that I think it might be time to close off her other room and keep her in Total Health.

But here is my accounting of obstacles that make me feel like I have no place in any part of my mother's care. She recently went into a deep dementia-like state. I discussed it with several friends who had experienced this with their elderly parents and they told me about UTI and the elderly. I googled it and found an article on the AgingCare website. I told my brother about it after I found out that my mother was being treated for a bladder infection. My brother was totally disgusted with me for even looking into it until a wife of a friend of his told him it was true. My brother also badgers me about not trying to convince my mother that her imaginations are just that. But, the thing is, I don't! I spoke to the rest home psychologist on November 20, 2014 and he told me how to handle discussions with my Mom and I have done just as he says, side-step, agree, tell her I will report concerns to the administrators. He also badgers me about the fact that I should not discuss financing of her rest home charges with my Mom, but I never have.

Just recently I sent two emails to the rest home asking them if I should be reporting unusual conversations with my Mom to them. I have received no reply.

My brother visits my Mom every two months and talks to her by phone maybe once a week. I visit my Mom once a week at least, have lunch or take her out to lunch often, talk to her on the phone two times a day.

I have been the primary family member to be in contact with my Mom, while my brother has been in charge of her finances. But now all of a sudden, I feel worthless and disregarded as a valuable participant in the care of my Mom. While I feel like throwing in the towel so much of the time, I know that I can't. But this feeling of worthlessness is driving me to the edge!

When I try to talk to my brother, he just ends up doing all of the talking, raising his voice until I feel like a child that has done something wrong. I need help! I have tried to find a local Caregivers Support Group to attend but have had no luck. I do not know just where to turn. Meanwhile my Mom is on my mind constantly! I have been her main contact person for the past 10 years at least and now I feel like I am not wanted - not by her because she has no idea of what is happening - but by my brother and even the rest home.

gladimhere Feb 2014
Kitty, how long ago was the surgery? Anesthesia can cause increased confusion in the elderly, especially those with dementia. My dad had a hip revised, second replacement, a couple of years ago. While he does not have dementia, ok, maybe just a little bit, the anesthesia really did a number on him. It took a full two weeks for him to begin to sound and act like himself again! So, do not rush vacating mom's old room unless the increased confusion has gone on for a couple of weeks, without any improvement.

JessieBelle Feb 2014
Everyone had such good advice. Your brother is not the boss of you, so if you want to talk to someone, then do whatever you want. I agree that total care seems to be the best choice at this time. You visit and talk with your mother quite often, so maybe you can share information with the staff when you visit. They see your mother all the time, so they are probably aware of most things. It is great that your mother has you as an advocate.

As for your brother -- I would just let him do what he needs to, then continue visiting your mother when you can. The nice thing about having her in a care facility is that you can relax if they are doing a good job. Just enjoy the time you have left together.

In some families brothers are always superior. All daughters can do is shrug their shoulders and get on with life. When you get a certain age it is no longer worth the effort of trying to change it.

I hope you can find a good support group so you'll have people you can talk to. I think it would be great to be able to open up without someone telling you to stay silent. That feels terrible when someone does that.

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BarbBrooklyn Feb 2014
KittyJo; You know, we are adults in the world, at work and in the families that we create. But when we go home, we resume our assigned places in our families of origin. I'm going to hazard a guess that your brother is "the oldest" and/or "the smart one". And you are "the baby"? "not so bright". (only in the eyes of the family, clearly you have a good head on your shoulders). It's hard not to get depressed when these childhood roles get foisted upon us when we're at our most vulnerable. Have a physical checkup, talk to your doctor frankly about your loss of self-worth; counseling, medication, meditation; they can all help, together or separately. Your brother seems like one of those dudes who is very closed off from his feelings and the idea of mutual support (like we have here) is very threatening. Talk to us! Love you and hugs!

jeannegibbs Feb 2014
I don't know if your brother is fragile right now, needs to keep a tight rein on his own emotions, or is just being a jerk. But whatever his problems are, they are no reflection of your worth and the value of your contributions. I suggest minimizing contract with Brother. He may never be able to see you as a contributing adult. He may always respect the word of his friend's wife before yours. He may always assume that you will do inappropriate things if he doesn't explicitly tell you how to act.

But he is wrong.

Don't let his shortcomings bring you down. You are doing awesome on your mother's behalf. Keep it up, and, please, please, feel good about it. You deserve it!

vstefans Feb 2014
Brother just seems to want to handle things as unemotionally and don't-rock-the-boat style as possible, maybe is more resigned than you. I would personally tend to side with the person who wants to make things the best possible in terms of mom's quality of life, or at least to suck as little as possible, as long as they are not being unrealistic. In other words, your point of view is just a valid as your brother's and you don't need to be ashamed of being devil's advocate at times. And when medical stuff can't be fixed anyways, just being there and being the caring daughter who tries to squeeze a few more drops of lemonade out of this lemon called dementia, you are doing greater things than you OR your brother realize.

Veronica91 Feb 2014
it would probably be sensible to allow Mom to remain in Total Health. her physical problems may improve but the dementia will not and she is already settled in her new surroundings. Can you contact some of her friends in the other wing and encourage them to visit or take Mom over to participate in some of the things she used to enjoy. May be a couple of her friends could come out to lunch with you. Limit the information you relay to your brother, he can ask the staff just as well as you can. You are an extremely valuable part of your Mom's life so don't think otherwise. I agree you should have a chat with your Dr and if he advises take some anti anxiety medication. The staff are taking care of all your mother's health issues so you don't need to micro manage, live your life your mom is a part of it but not the whole focus

vegaslady Feb 2014
Not sure why you are suddenly feeling worthless unless your brother is finally getting to you and all the stress has just built up to some sort of breaking point. It's time for you to see your doctor, explain your stress and have a complete checkup. Maybe you need some meds for yourself at this point. Can you take a short getaway for yourself, break the cycle of routine and something for yourself that isn't totally about your role as caretaker? You sound like you're doing the right things for your mom. Expand your scope of caregiving to doing more for yourself. Keep looking for a support group, there's bound to be one somewhere. Don't try and fix your brother, just concentrate on your needs.

pamstegma Feb 2014
Keep mom happy and of course talk to her staff about how she is doing. Your brother is obviously distraught by her decline and loses emotional control, so tread lightly on his feelings. Avoid conflict. He is very fragile right now. As for the emails, forget emails, they may not even get there. You do want to have good rapport with her nurse and aides, because they are hands on with her care. If there is a problem or a sudden change, report that to her MD and report back to other siblings. Keep communication open. Keep a journal, so you know when things have happened and chart her progress.

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