I recently wrote about my Mom's bone-on-bone arthritis and received some wonderful responses.
I am not trying to understand the emotional state of my 100-year old Mom, who is very astute mentally and seems to be able to interact with people on a very clear level. But, when it comes to my suggestions (or my brothers'), she adamantly refuses any suggestions that might help.
I used to be an RN and taught at several universities. I still understand the medical systems about which I taught. My family has always used my knowledge of medicine as a basis for asking questions. My Mom used to respond positively to my feedback as well. She changed her diet due to the prompting of me and my brother and adopted some different lifestyle changes as relates to vitamins, etc. I have always been the person that was the "voice" for the family as my Mom has always been very stubborn and will not move off of a penny if she thinks she is right. I have always been the person that my brothers called on to try to be the "voice of reason" to get her to be flexible.
Now, we are at a key point where we have tried so many options to make her comfortable (lift chairs, hospital bed, steps to ease the ascent into the bed, and now a mattress topper). Her legs continue to swell because every time we try to solve a problem that would enable her to get back in her bed (or sit in the lift chair for an hour per day), she adamantly refuses and gets very belligerent and hangs up on me (or my siblings). Her personality has always been the kind that believes she is "right" and the other person is "wrong". My Dad often escaped to the bathroom with a book when we were children. She can be fiercely protective of her children, but very angry when things do not go her way. It has reached a critical point where it is now impossible to even ask a question about her health. Yesterday she told me that all I do is make her feel bad when I call. I only asked 2 questions: 1. When are you going to make your Dr.'s appointment? 2. You know the doctor may have to admit you to the hospital to decrease the severe swelling, don't you? These 2 questions evoked lots of painful words from her, i.e., that I am killing her, that none of my calls make her feel good, that the people in the hospital will try to lift her legs and that will hurt her. She then hung up on me.
The challenge we are having with our Mother is that "she has always been a fighter to live". When she had breast cancer years ago (1973), she talked about life. She used to tell us as recent as last year that "she wakes up every day thinking about living, and not about dying". But, she is refusing to do those things that can prolong her life and diminish her suffering in spite of her desire to live. It is as if "fear of discomfort" (joint pains) has become more important than the massive fluid that is accumulating in her legs and will eventually shorten her life. (as she sleeps sitting up every night). The logic of wanting stairs to climb into a bed that is lower than you makes no sense. The refusal to go back into a room and sit in a chair and raise her legs for 15 minutes because there is no television back there is illogical. The refusal to wear her Life Alert because she just doesn't makes no sense. The refusal to wear Depends, but has accidents trying to walk to the bathroom makes no sense. The refusal to let an ambulance take her to the hospital because she didn't want the neighbors to hear the siren makes no sense at all. The refusal to take the medicine for the swelling because it made her blood pressure go down...I understand. But, to not try to work out an arrangement with her doctor on how to correct that...makes no sense at all to me. The refusal to take the tylenol on a regular basis (recognizing that she is in severe pain) is illogical to me. She has not had any bad side effects, but because she takes 4 pills in the morning (and the same 4 pills in the evening), that is too much medicine. So, she continues to have pain.
None of us live in her home town. 1 brother lives 30 minutes away and goes regularly to see her. Another brother lives 1.5 hours away and goes when he can. But, we call every day. We send things to her. My brother goes down and arranges her house to make her comfortable. We have always been a close family. She has a strong circle of people that care about her in the community. She is always being recognized as she has so much to give and taught Math / Algebra for 46 years in that community. So, she is not missing "LOVE".
We are paying people to take care of our Mom so that she will not have to go to a Nursing home, but she is not meeting us half way at all. I am totally FRUSTRATED and LOST right now.
Need your perspective and advice.
I can only add, listen to your gut and when mom says no, do it anyway. I do.
They fuss, but I'm the one who always picks up the pieces.
I think its pretty normal for a parent to give their children a much harder time than strangers. As they age, the role changes and child becomes parent - and naturally they don't like it and fight it. Seniors don't want to lose their independence and if it feels like they are more in control if they refuse to listen or cooperate, that is what they will do.
So, she is getting a lot of coverage. She refused to have someone to come in and work with her joints/mobility issues.
All of this happened so suddenly. We gave a huge, 200+ attendee , birthday party for her on her 100th birthday last April. She walked into the building using a walker (without any assistance from anyone else). Within a few months, her mobility started to rapidly decline. By December, we had to get in-home caregiver support for her.
She has always been very active and I assume this anger is related to the rapid loss of her ability to get out and shop, cook for the neighbors (was always a big treat for her on Sunday). I try to remind her of all of her remaining gifts....does not seem to bring her joy (my reminders).
Yes...we are in a constant struggle.
We have in-home for my Mom. Had to be someone(s) that she trusted. So, the neighbor right across the street comes in cooks breakfast, helps her with her dressing, cooks lunch, takes her to the doctor, light cleaning, grocery shopping, etc. Then, there is another lady that comes in around 7:00PM and stays until the lady across the street comes in and makes breakfast. Thankfully, I have 3 brothers and we split the cost (Mom chips in her part as well). Then, Mom has friends that come in and take turns sitting with her when one of the caregivers must go out of town or needs to take care of their own personal needs.
We asked Mom to leave the bedside commode in the hallway (near the sofa, but out of view), so she doesn't have to walk so far to go to the bathroom. Or,when someone is there, let them push her to the bathroom in the wheel chair. Both suggestions met with a "resounding NO"....but, she has had a few mishaps and soiled her underwear in the process.
Her stubbornness has gotten her to 100 (101 in April), but I keep reminding her that the same behaviors will not necessarily keep her with us if they go against her health. She just shuts down and reminds me that she "doesn't have to do anything that I suggest". I rationalize that "her decision-making may be the last vestige of control that she has" and that might be the underlying problem. But.....no amount of rationalizing changes the reality of what she is doing to her health, which was good relatively speaking (but, for the arthritis).
Ok, fine. Looking back, I can see how this was threatening to her. I don't say a word anymore. Any change is so hard for old folks. But as things slowly get harder for her she's beginning to hint that a little help, down the road of course, may be needed. It will probably be crisis driven, a fall, infection etc. I suspect you're in the same situation.
Thank you. We have discussed with my Mom the options (like a Nursing Home, which is really a nice one in her home town), but that is an emphatic "NO". I was of the impression that as long as she is able to make her own decisions, we cannot force her hand on entering the nursing home.
We love her dearly and she has always been sort of a drama queen..we used to joke about that.
We used to be able to talk about complex math problems (even as recently as 99 years old), but not any more. She still does her puzzles (some not easy at all...and , is successful). But, if the subject broaches her health...the arguments suddenly take hold. She arguments just become very painful, overly emotional and she hangs up. Since she told me my calls only make her feel bad, I have decided to give her some space away from me. Not because I am angry, but because it is very difficult to be the "whipping boy" when all that I am doing is for her comfort and to ensure she can remain in her home as long as possible.
Again...thanks for your words.
Forget for a minute that she's your mom and look at the situation objectively like you would as an RN. Also our roles get reversed. You are now the parent. Mom is going to have to do some things she doesn't like.
With my folks I don't fight every battle with them any longer. But they know they can't stay in their home if they don't take basic care of themselves and allow some in home help.
No, she's not.
She's lost her reasoning ability. If she were taken for extensive cognitive testing, it would show mild cognitive impairment or dementia.
You almost certainly have no ability to " make" her do anything she doesn't want to. But if she falls, you DO call 911 and let the emts evaluate her. She doesn't get a choice about that.
Read all you can about mci and early dementia. You may understand the illogic a bit better. And don't beat yourself up. This is not your fault, nor your mom's.