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frustrated / angry / alone
I've had to step back -- for my own sanity. Mom hasn't even been diagnosed yet -- how will I possibly make it through this? She absolutely hates me right now -- everything I do. My brother has his head buried in the sand and tells me I'm being dramatic, but he hasn't even seen his mother in 6 months. Mom's mood swings are crazy -- she's not the mother I knew. She's had two falls in the past 3 years, breaking a leg and now her arm so her primary care doctor is is focused on those issues. We've called the doctor and shared our concerns -- lately her loss of 50 pounds and complete loss of smell and taste. The ENT recommended an MRI but she won't go. She lies to her doctor about everything -- of course he only sees her for 10-15 minutes every few months -- he's not around her like I am. My mom needs help!
I guess my concern right now is my riff with my brother. He negates all of my concerns and I need some support. What would I like? I'd like a family conference where we BOTH share our concerns and set up a game plan in how we can help her. When I suggested the idea 6 months ago, my brother's answer was "I don't want to drive that bus." My retort was "neither do I but she's our mother and needs our help."
I wish I had been more proactive, but I recently lost my husband and haven't been strong enough. Now my mother's doctor is out from aortic surgery and won't be back for a bit. And mom is dealing with her broken arm that isn't healing -- she's in pain every day and her muscles are atrophying. My brother returns October 15th and I just want to run away. Let him deal with things. I need a break. But I know that's neither realistic or mature.
Help. Advice? Step 1?
welcome to the forum, you've come to a good place to help figure out what you need to do. First and foremost: whoever has power of attorney for you mother drives all-decision-making, If this hasn't been done, you need to address is as soon as possible, with a certified elder law attorney (CELA--can look up by location at nelf.org). Sadly, you can 't expect her to agree or cooperate or be happy--any more than you could a two year old (and possibly less, since she's going to lose capacity, not gain it). I would address your concerns in writing to the doctor ASAP too-might be better if her own doc is out, as someone who doesn't know her can be more objective. This is to be sure that any medical factors other than dementia have been addressed-vitamin deficiencies, thyroid problems, etc.
I'd start with those two steps. If your brother's not supportive, so be it, you won't be able to force it. Good luck!
I am sorry that you are going through all this, especially after your own loss.
M1 has given you good advice - contact a CELA and thorough medical workup.
Also, if your bother does not have PoA, you should go ahead and do what needs to be done and, as difficult as it may be, forget having his support. I would only try to speak with him calmly once more and, if he doesn't come around, so be it. A constant battle with your brother will only add to the stress of the situation. Put your energy elsewhere.
thanks so much
I reviewed the documents and my brother is the agent and I am the 1st successor agent -- which means nothing unless he dies or resigns
We are BOTH listed as health care surrogates
I will write a letter to her doctor tomorrow.
Then you were right to step back. Hard as it is, you may have to not answer het calls, or direct her to him. If you have a copy of the legal documents, read carefully. Hes going to have to "drive that bus".... or appoint someone else.
daughters frequently get put in this catch-22, expected to be the caregiver but not given the authority. I would think hard about how to extricate yourself from that position.
Actually, I'm glad that he has Power of Attorney (being the successor agent means nothing unless he dies or resigns). I need to read the Health Care Surrogate information very carefully as we are BOTH listed on that with an "and"
My fear of writing a letter is that I'm sure her doctor will share it with her, thus creating more animosity -- she seems to think that I'm "out to get her" -- which is completely unreasonable. But her doctor needs to know all of the details that I see on a day to day basis; I'll just need to take the risk.
My brother returns to FL in a few weeks, so I'm hoping when he sees mom's state that he'll come around.
Good points. When my brother returns in a few weeks, he'll see how mom has deteriorated. Maybe then he'll be more supportive of my role.
Let me know what you find out.
I'm sorry you're going thru this. I'm in the same boat.
Ok, I did my best, is what I tell myself. My father is almost 90 and no longer all there, neither can he even come close to caring for himself.
My siblings also ignore the problem, they escape the situation any way they can.
I can no longer deal with the amount of care he needs. No one can.
His mind is so far gone now he can't even have a conversation anymore or understand what he's watching on TV. Shuffles from sofa to kitchen table, sleeps most of the day. He's had several falls which required hospitalization.
He needs assisted living or a nursing home now, no other choice. That's sad, because in his youth he did work very hard and supported his family.
I can't be guilty over this, it's just an impossible situation.
Tell yourself you've done the best you can and it's out of your hands now.
If you are a believer, pray.
MzBiz, lots of great advice here!
It occurs to me that with the primary dr being out, something could be orchestrated with someone else at that group, who seems to need to see your mom for some fiblet-type reason. You could contact both the recuperating and the new doc and tell them your thoughts. The new (temporary but still...) dr will be seeing her and you or bro with fresh eyes. You might be able to swing this to help yourself out. Perhaps the new dr "saw something in her chart that they want to check into, something like that.
"Hello MsBiz and a very warm welcome to you. I send you my sympathy on the recent loss of your husband, this may compound the emotions and affect the energy to deal with all the challenges you are facing with your mother.
This is going to be a very long Post, so I apologize for that in advance.
First thing; our Loved Ones (LOs) with dementia will most often lash out at the person who is doing the most for them, in our family that was me. Even though we know it is the dementia causing the behaviors, it is still painful and yes; frustrating as we continue to try to do so much to help. Also, my only sibling, my brother did not believe our mother was having any problem issues and it must be, "me." Of course he did not visit but rarely for maybe 20 minutes every few months or so and she adored him and was calm whenever he was there. He also was not open to assist with anything in any way.
What I did was not to blame my brother for not helping, but simply to let it go. Much easier that way and actually decided that I would consider myself an only child for the duration.
Most important thing is to contact the physician's office and find out which physician is covering for the primary MD who is out recovering from heart surgery as he may be out for quite some time. When you know with certainty, then time to take action. You may need to use the caregiver's tool of using, "therapeutic fibs" to get her to the doctor. Perhaps you write a letter from Medicare to her stating it has been too long since she has seen the doctor and she needs to do so or Medicare will not be able to continue being her insurance (ouch); or if you can, I had the doctor's office help me get my highly resistant and behaviorally comprised mother in for an appt. The wonderful office manager, working with me, called Mom. She told my mother that it had been so long since the doctor had seen her, he could no longer prescribe meds for her as that would be against the law; AND they just happened to have some appt. times available, would she like one? Since my mother put great importance on her BP meds, she took an appt. in a flash. We often must use fiblet dynamics to gain cooperation and get important things done as our LOs brains have been damaged and by that point, they are not able to use logic and do not have good judgment for their own best interests.
What is concerning is the description of some of your mother's symptoms. There are, as M1 has stated, different conditions that can actually mimic dementia and they need to be ruled out. Huge list of these of which thyroid issues and vitamin issues are only two of them. Labs would be drawn and then it goes from there.
An MRI would be difficult, and I would suppose if the doctor can convince her to go, she would need to be sedated as it is not an easy tolerable test.
Once you have an appointment for your mother, I suggest not making a phone call to describe the problem issues - it is time and best assimilated to write a detailed but succinct memo to the physician outlining all the changes in behavior, cognition and function and get it to the MD two to three days prior to the appt. If you email or fax such a memo, be sure to let staff know it is coming and that it is time sensitive to an appointment then double check to ensure the physician got it. Never let her go to an appt. alone, she will not recall or absorb any input - go with her and if need be, entice her by saying you are going to take her out for lunch or dinner or dessert afterward. By the way,, label any memo sent, "CONFIDENTIAL FROM PATIENT." I always carried a copy of the memo to the MD in my handbag to the appts. Then I would excuse myself to "use the bathroom," and speak to the staff to have them check with the doctor to find out if he had received and read the memo. If so, good. If not, I then gave them the copy and asked he read it before the exam. An effective exam cannot be done without the informtion needed to do so.
It may be that she will develop more serious symptoms and may require being seen in the ER. At that point, she may be admitted to the hospital if there is something physical needing to be addressed. If not; it may be time to confidentially speak to the ER doc and ask about her being transferred to an inpatient Geriatric Psych Unit for assessment and treatment to be initiated. If your mother is in dire straits and in great danger at home, you could contact the APS in your area and ask to have your name kept confidential. They will make a visit, but if they see she is reasonably safe and has shelter and food, they will not take action, but there will be a record of the visit.
Sometimes, as hard as we try, we can do nothing due to our LOs absolute resistance. In such a situation, there is nothing we can do except wait for the next shoe to drop, and eventually it will. At that point we can step in. A wise Social Worker had told me that and I needed to hear it as I was in knots trying to cover everything and get the impossible done.
Also, no arguing, no demanding or pointing out problem thinking, that will only get her feet dug in harder. Sometimes, validating their feelings and then leaving it, can be helpful. "Gosh Mom, I am so sorry I (did whatever), I have upset you and I understand. I am so sorry that happened and I made you feel that way, I will be careful not to do that again." "Gosh Mom, I am really sorry you feel I stole your purse and you are really upset and angry . . . I was cleaning and moved it. I am sorry I did that and will not let that happen again." Of course, fiblets, but validation can be helpful. Once validated, refocus onto something else quickly.
It is a lot and each situation is different, each person with dementia is different. Of course, medical reasons for the issues must be ruled out and then dementia becomes the focus; especially actual type of dementia must be diagnosed. There are multiple different kinds and treatment for one type may be contraindicated in another. Eventually, especially if the primary care MD strictly decides to send her to a dementia specialist, I strongly suggest that the doctor not use the actual reason, but instead say it is for back pain, or blood pressure or something else so she does not go ballistic and refuse all else.
One last thing, sometimes, when our LOs behaviors suddenly become more florid, it is important to have a "silent" urinary tract infection ruled out. These are called "silent," because there are usually no physical symptom, except there can be a dramatic change in behavior, or cognition, etc. until treated. The UTI does not cause dementia, but it can make behaviors worse.
That was a lot. Hope I did not put you to sleep. This situation is not a sprint; it is a long distance run and it will all take time. Please let us know how you doing and remenber that there is no perfection in all of this, just the best you can do under the circumstances with the challenges at hand.
Sending best wishes from one daughter to another,
There's got to be a better way to take care of our elderly. I feel so helpless.
Thank you. That made me cry. Cry for myself and cry for everyone else who's going through this. I just hope I have the strength -- and patience.
I'll practice on the fiblets.
At first, fiblets were very difficult for me to use. However, when I saw how it kept my LO from meltdowns and actually got some important things done that needed doing, I was able to see them for what they are; a kindness for our LOs. After that, I had no problem using fiblets when necessary.