Dysfunctional family and caring for Mom.
My family is very dysfunctional and in this crisis with Mom, it is rearing its ugly head. My brother is 51. I am 67. He works and lives 3/4 hour away; I live 1/2 mile away. I do not work, but am chronically ill. He does not believe it because you cannot see my illness.
Over the past seven years, he was the one who took her to doctors. Until 2 years ago, I was with her for two operations, and went to rehab nursing home several times per week for 7 weeks, and so forth. In other words, I was far more active than in the last two years. Since getting ill in last two years, I try to do all I can for her .. get food to her (which is a problem as she does not care for my cooking, nor meals on wheels and wants delivery of restaurant-cooked meals to her home.
My husband shops for all food needs and brings to her weekly. I shop online for other needs like depends, clothing, and whatever she asks for. My husband and I also provide a major source of financial support which this younger brother does not know about. We have been doing this at least 20+ years, as she is on a very limited social security check and has no other source of income. What we have done, we have done quietly without talking about it. I was the one who encouraged my husband to help my Mom out, as she helped us during many years when our children were growing up. So, it is only fair ... and, in any case, I would anyway. I was behind getting her on all the government programs she is now on ... another thing my brother does not know.He accuses me of fabricating my illness and of trying to stop my husband from helping my Mom ... this is the opposite of what has happened.
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What happened was he became the one who took her to the doctors. He has only shared with me minimally concerning my mother's health. He would not even provide me with a list of the medications she is on so that ,in one emergency, when I took her to the ER for a heart attack, I had no list. At that point, I called him on the phone and really let him have it. He has hated me ever since. Actually, his dislike for me goes back to when we were kids.
My mother qualifies for government to step in and help her with aides, but when we did that a few years ago after a fall she had, she complained. We then hired a woman to come in once a week to do the cleaning only. The fact is that dementia or not (even before the diagnosis), my Mom seems to want things a certain way ... her way. And, now, she does not seem to understand that money is limited.
I cannot get along with this brother though I have begged him. He is authoritarian and will call me and tell me to "get over to her house and clean up the mess" ... this was an accident she had. He calls my husband all the time to do things which my husband usually does do. Then my husband takes it out on me. I hate all of it. I hate the guilt they are putting on me. I have another brother, age 60, who lives one hour away and who is in total denial (basically a good, but troubled man). I cannot get him to even understand the seriousness of this issue, so no help there. The brother who takes her to doctors does not respond to emails I send asking about a recent doctor visit (all doctor visits). He shares only minimally with my husband.
She has advanced heart disease/congestive heart failure and early dementia. They are all in denial and I fear for her in her home. They are not taking it seriously. She tells me things but does not tell them. So, they don't know how bad the circumstances are over at her house.
The public nursing homes are deplorable here, at least where we live, and we cannot afford the private ones. In any case, we cannot even get her to accept having someone come into the home through the government, and a nursing home is a last resort. She was there twice after falls and hated it.
So guilt for not doing more and stress from watching the Mom I love decline and suffer,and worry because I am not being taken seriously. And, then of course, there is the rest of life.
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I am an awful cook ... I try ... but I never matstered it .. even the few things I was good at, I seem unable to do very well anymore. So that is out. My mother tries to cook, but can't now. The senior meals do taste dastardly. I had one. So I said to my mother. The meal itself (in particular the meat or fish or chicken for the day is not eatable, however, the veggies and often the starch is okay. So I told her to just get out a little bit of cheese or something to go with it. The rest of the meal is milk, juice, bread & butter, and fruit (all of which she is very happy with). We will see. It is a one day at a time thing.
My brother, I realize, has been angry at me for a lifetime and I have asked, I have apologized for I know not what I did, and he has me on "ignore". The problem is only when he has me on ignore where my mother is concerned. This gets me upset. But, when he wants me to do something, he will email me.
This is kind of funny now:
Funnily enough, he sent 15 emails and I could make not sense of his one sentence statements. In the 16th email (we were going back and forth for an hour), I said "I do not understand what you want or are saying, please call me.
Even wrote my # down for him! So, he wrote back "I don't have the time and some sarcastic remark about "it's really very simple". For the first time, I just deleted the whole thing. I was angry but I am smiling now because, you see, he still had the option to call me and he did not. That makes it his problem not mine. I have enough on my plate (much more than my Mom's illness) and I don't need to take his guff. Taking if for years, got me nothing but more disrespect. In an emergency, there is no question that I will respond, but when he is being passive-aggressive (I think that is what he is being when he won't just call me and tell me straight up "Here is what I need. Here is what needs to be done"., then I will not respond. He must have solved the problem because I never heard from him.
On the other hand, he has not reported back to family on her lab test results ...
and he has had them since Monday. It is what it is and I will do what I can do ... after that it is in God's hands.
Caregivers feel guilty. That's what we do. Rarely is there a good reason for it but we flog ourselves over every little thing all day long. Telling you to not feel guilty isn't going to help you to not feel guilty but try not to feel guilty. It sounds like you are doing everything you can do for your mom. It's heartbreaking to watch our parents age and decline and that you reached out here and shared with us tells me that you're a good daughter and are doing the best you can for your mom.
As far as your brother goes, I've read so much here about siblings who hide medical facts and medication information from their other siblings. I don't know where that comes from but I wish I knew. What is the purpose? Is it the adult equivalent of the childhood game, "I've got a secret"? Does your brother feel important knowing things about your mom that you don't know? It's very curious to me.
Being a caregiver in a dysfunctional family puts you in good company if you read about all the other caregivers here who are going through the same thing. Dysfunction is bad enough but stick an elderly parent at the center of things and you've got a mess.
There comes a point in our parents lives where what they need becomes more critical than what they want, if you want to keep them safe. To me, you have two choices ahead of you. Either go along with what mom wants and let the chips fall where they may, with her demands to be left alone or get her to a nursing home or assisted living, where she can be cared for in a safer environment. She won't like either option and it sounds like your brothers won't cooperate either.
Since none of the other players in this scenario are going to change (brothers, mom) I think the point has come where you need to protect yourself and your husband. You've done what you can for your mom - no need to feel guilty. She certainly doesn't sound like she values what you've done so far. My recommendation would be to let it go and let her live life exactly the way she wants, whether it kills her or not. At least she'll be less unhappy. But you have to accept that. And quit giving in to her every demand and set some boundaries. Restaurant meals every day - who does that? Who can afford that? You've done enough - you don't have to kill yourself in the process.
First of all, you have access to Mom's house and can make your own list of her meds and when they are taken. A copy of this should be in Mom's purse or whatever goes to the doc each time. The list is updated when changes are made. Next time she is at the doctor, be sure to have her sign HIPPA, or whatever it is called now, so you can talk to the doctor and get info direct from that office.
If not already in place, be sure to get POA and MPOA, makes life a lot easier for everyone as the elder gets older.
Sometimes we just have to make decisions and do things that our elderly parent may not agree with. Like having a nurse visit, a cleaning person each week or whatever done that provides good quality of life for your Mother. It is part of becoming the adult in the situation and putting your parent's needs first.
You can't change your siblings, so just let all that go. Easier said than done, but it can be done and you will be much more content. Best of luck!