How to care for a person who wasn't a kind person to begin with....

KOTR

I reside in a rural area that does not have access to support services so I am thankful for this venue to ask for help. My "mother" (I refer to her by her first name as she has not earned the title of "mother") lives with us as she has no resources of her own and no other family to care for her. She alienated all extended family decades ago. She is normally a manipulative person, selfish, lacks empathy for anyone other than herself and will often play the "victim" role to manipulate others into getting what she wants. Harsh, I know, but trying to be succinct. She is 86 now and dementia symptoms are raging. Paranoia, just being plain disrespectful and mean, hurtful. I spent many years trying to understand her as a human being and understanding how she became who she is based on her life experiences. I have been able to forgive alot. But she never grew or changed for the better through life. She stagnated into a jealous, bitter person and now it's amplified.

She fell ill last November and I thought she actually was having a stroke. Turned out to be some virus, not Corona, and it really knocked her down physically and cognitively. She has recovered since but not back to baseline. We found it necessary to place locks on the doors of our home that lead to outside as we found her wandering. We reside in Wisconsin, in the middle of the woods with a pond not too far away, and it's cold out right now with snow on the ground. Before I installed locks I consulted with her MD. She felt this was a needed safety measure at this point. 

Her MD retired so I took her to the MD that would be assuming her care a few days ago. Normal appointment until the doctor asked "mom" if she had any questions. With an accusatory tone, she looked me up and down, then looked at the doctor and said - "I do have one question....is there any reason why I need to be locked in at night?" My jaw dropped. I felt hurt and attacked. I am bending over backwards, living in poverty right now as I cannot work and leave her alone, nor can I place her anywhere as we cannot afford it (and I could not do that to another human knowing that could be a death sentence right now), and this is what she thinks of me? That I am keeping her imprisoned somehow? I explained to new doctor that it was for the outside doors. Doctor told my "mom" that confusion gets worse at night and she was sure it was for her safety......but still. It was a punch to the gut. She was expecting that I would somehow be admonished by the doctor! I was embarrassed, hurt, and I told her that. She says "I wasn't trying to hurt you" - which translates to - She does not have to bear any accountability for the results of her actions. 

It's hard enough waking each day wondering if she passed during that night. I did not want to add to it - did she wander outside and freeze to death. 

How do I continue to care for a woman like this? Doctor is sending a referral for her to "memory clinic" as these are the doctors that would prescribe meds that may help....but how do I deal with her, and keep my own mental health and heart from breaking in the meantime. Thanks for the read and any advice. 

     

SQBEAR50

Short answer for me is: I don't and won't. My life matters too.

N

Arrowhead

This may not help, but there's something I learned years ago: It's amazing what you can do, when you have no choice. 

All you can do is your best. Just keep at it as best as you can. You may find that you have strengths that you never knew you had.

Bakelite1

I am very sorry that you are going through this.  Here are a few thoughts: 

1) If you can get her an appointment with a Geri Psych as part of her assessment through the memory clinic evaluation, that would be great.  This is a kind of doctor very skilled with dealing with behavioral issues and how to medicate them.  It sounds like she could benefit from some medication. 

 2) I have not dealt with a parent with this history, but one thing I have experienced is that there is no benefit from trying to reason with the person with dementia.  So, even when they are unreasonable, or in this case, hurtful because this kind of lack of understanding, there's generally no good that comes from talking to them about it.  My Mom got a point at which she had no consciousness of her own condition.  There's a name for this?   And there was no way I could talk with her reasonably about all of the issues.   So, deflecting and moving on to other topics were what I tried to do.  

3) Your suffering matters.  The mid-states of this disease are the hardest to deal with, in my experience.  When it gets better with Covid, I hope that you can reach out for respite of some kind (day programs,  perhaps a carer or friend to come give you some kind of a break?)And, that you re-consider placement if it is a possibility in the future.  We all have our limits and caring for someone without help is extremely difficult.  I wasn't able to do it. 

Sending you big hugs. 

Quilting brings calm

I would run towards placement and not look back.  Meet with Medicaid.  If she has no resources she should qualify.  It’s not a death sentence now that the vaccine is here.  Those in long term care facilities qualify for that first.  You cannot keep yourself  in poverty just to keep her at home, You are affecting your own resources that you will have when you get her age.  I have refused to use my and my spouses’  resources for my parents because I do not want my children to have to use their resources for us when the time comes. My parents have some savings, but not much.... because they made terrible life choices beginning in their teens and continuing all their life. 

Furthermore. Your home  and the surroundings are not safe for her.  We don’t have a pond.... but we live in a town of 500 and there are miles of farm fields out here. We’d never find my Mom if she wandered off.  Which she’s already shown a tendency to do.

GothicGremlin

KOTR, that's so rough. Like others have said, your life matters very much.  I tend to agree with Quilting brings calm - check in with Medicaid. Your mom may qualify. If so, I'd place her as soon as a spot becomes available. No guilt.

I can't imagine how difficult it must be to take care of a person like your mom. I'm in the opposite place as you - my sister is, and has always been, a good person, a helpful person, and has a positive attitude - even now.  Even though she's a fine person,  she and I had discussions about her care long ago (when I was certain she was still comprehending those discussions), and when the time comes, I'm placing her in memory care.  I'm not doing that as a punishment, I'm doing it because I know my limitations.  I need to make sure I'm physically and mentally healthy so that I'll still be around to take care of her.

Cynbar

KOTR, this doesn't sound like a good situation for you at all. You don't owe it to your mother, or anyone else, to be living your life this way. And it doesn't sound like it is making her all that happy. Her brain isn't working right, you can't reason with her or expect her to make sense. Please, start the Medicaid process. You may need an elder law attorney if her finances are at all complicated, but you can save the money and do it yourself if it's pretty cut and dried, if all she has is her income and maybe some savings. The process takes a little time so best to start right away. Then, look around for facilities that accept Medicaid (not all do.) Most nursing homes do, some memory care and assisted living places do but not all.  You can't go on this way, sooner or later you'll breakdown and then she'll have to go to a facility anyway.

Jo C.

Hello KOTR and a very warm welcome to you.   This is a very difficult and challenging situation, and I am sorry for what you are experiencing.  There are options to deal with what you are trying so very hard to manage as well as you can. 

When we are new at this, we find our emotions tie into the logic of it all, and it is often difficult to see matters with clarity.  I had this in my own experience with a mother who had severe behavioral issues in her dementia.

The Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900.  I suggest giving them a call, but when you do, please ask to be transferred to a, Care Consultant.  There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are wonderful listeners and support for us; they also have much information and can often assist us with our problem solving.

What I found both as an RN and as a daughter, was to realize that the best approach was to get my mother to a dementia specialist.   This is extremely important in order to get an accurate diagnosis for the type of dementia present.  There are multiple different types of dementia of which Alzheimer's Disease is only one.  This is crucial as meds for one type of dementia can be contraindiated in others and make things even worse.

Our primary care MDs are awesome at so much, but they are not on the cutting edge of dementia dynamics in depth as are specialists.   My mother was diagnosed by her primary MD who was a board certified Geriatrician as having Alzheimer's.  Her behaviors were over the moon and the meds did nothing to help; in fact, she seemed worse.  I was finally able to get my mother to an excellent Neurologist who sees dementia patients as a routine part of his practice.  After exam, etc., it was determined she did not have Alz's, but instead she had a behavioral variant of FrontoTemporal Dementia.which a SPECT Scan confirmed, and she was indeed on contraindicated meds.  FTD is like Alz's on steroids, and the behaviors can be over the moon.  And yes; manipulation and maliiousness are certainly part of it.  There are meds that can assist, but you will need your specialist.  Neuro is best at making an accurate diagosis for dementia type and is also excellent at prescribing best meds for what dementia is present.

Also, if behaviors ramp up; it is always a good idea to have the doctor run a UA with culture and sensitivity, (not just a dipstick as those have high error rates.)  A UTI will often ramp up negative behaviors and it can be quite dramatic.

It sounds as thought there may be a possibility that your mother may have had an undiagnosed mental health condition for years.   This dual diagnosis, if present, can complicate matters even more which would also make having a dementia specialist the best approach for managing the dynamics.  Her primary care MD can then manage her physical issues.

NOTE:  It would be very good to discuss applying for Medicaid Long Term Care, (Long Term is different from regular Medicaid), for the state in which you live.  This is important as care needs will grow and grow, and the time for in-depth care on a 24 hour level will become a reality.   To see what the criteria are for qualifying for Medicaid Long Term Care in Wiscosin, you can check the following link which will outline financial criteria, etc.: Wisconsin also has special programs re care in the home as well as others:

https://www.medicaidplanningassistance.org/medicaid-eligibility-wisconsin/  

If your mother has significant assets, you may wish to speak to an Elder Law Attorney re how to manage the issues.  An Elder Law Attorney can also discuss the Guardianship application process should it be determined your mother is no longer competent to manage  her own care needs decisions as well as her financial managment. Elder Law can also disuss the paperwork involved if one is not going to do Guardianship; this would involve obtaining Durable Powers of Attorney for Healthcare as well as for Finance, etc. if your mother is still able to sign her name, etc.  NOTE: It is important to have an Elder Law specialist as the laws are complex and the average attorney may well not be well versed in all the bits and pieces which often evolve.

You are important; the quality of your life and your future is very important.  The options all need to be looked at very closely.  Care at a facility is no longer the death sentence since the vaccine has come available.  You can check this all out and see what is going on in your area where you live.  What does one owe a parent who has abused one throughtout one's life and made a misery for so long.  How do we manage our conscience and what we feel obligated to in one way or another . . . these are important questions and in answering them, keeping perspective is very important.

First, we can recognize that old tapes from early years can continue to silently play inside our heads from times when we tried so hard to do the right thing over and over and over to placate an abusive parent.   When we recognize this, if it is part of oneself (and it may not be), then we can consciously set it aside.

For myself, and only myself, what I would decide would be to ensure that my parent was safe and secure in her/his  care environment; that there was food, shelter, medical care as needed and that the care facility had a locked unit so my parent could not wander. 

Some of us have found that when such a parent is placed, for some of them, there will be after a time, that the parent is actually much more calm  in an environment that has routine, structure, socialization and activities.  Amazing when that happens.  There is an adaptation period not only for our parent when placement occurs; there is also a period of adaptation for us too; it is all part of the process.

This is a lot to think about.   While thinking about all of it, try to remember this:  There is absolutely no perfection in any of this; there is only the best you can do under the circumstances with the challenges at hand.   Most of us cannot cover all the bases; we discover that there is no perfection no matter how hard we try and that is certainly enlightening.

Let us know how you are and how you are doing; we will be thinking of you and we truly do care.  Sending best thoughts from one daughter to another,

J.

windyshores

I can relate. My mother drank, was abusive and probably has narcissistic personality disorder. As someone said, now that her dementia is worse, things are a lot easier. She likes to be in control and demands gin, or demands her checkbook, or whatever, but now she forgets. We are lucky: she is in assisted living and she can also afford memory care.

Once vaccinations are done, facilities will be safe. In fact, if she moved soon, she might get a vaccination more easily through the facility. Not all facilities are horrible, even those covered by (long term) Medicaid. The other possibility is getting an aide in to your house so you have a break. Sometimes Hospice can provide aides for people with dementia: she doesn't have to be close to death.

I always try to use a third party to do difficult things (like take the car away, a long time ago). You are in a position where you have to lock the door to the outside, and she knows it and may or may not understand. Either way, that means you are controlling her life and freedom and she is going to react.

I am wondering if you could lock the door only when she is asleep-?  Or is there a way she can do the lock herself, after you tell her some story about wanting to be safe at night?  Is there technology that would help you, or her, lock it at certain times, or an alarm you could set up for the door, or a way of monitoring her?  It is never going to work, the way it is going now, with you locking the door and having to explain why. She probably doesn't know she has dementia and many of us never tell our loved ones.

With her personality and your family history, I really think placement would be a good idea. Without the strain on you,  you might even find that you can build a new relationship with the new person she is. I have found that to be true and it is kind of healing in a strange way.

One other thing: I got Power of Attorney and primary Medical Proxy while my mother had dementia but was still competent. Then I asked the MD to invoke the proxy so she cannot make her own decisions. I am also on her bank account. At some point you will need to do those things. Who pays her bills?

Once you have proxy, you can dialogue with MD's. Before a proxy, the doctor can read your messages but cannot respond.  I always communicate with an MD before and after an appointment so my mother can feel in control. In that case, the doctor would already know about the lock issue in advance and could come up with a better response.

And when I pay bills, and she demands that she do it herself, I tell her that I am her executive assistant. She is so amused by the "executive" that she forgets what she was upset about.

I bought a book on Amazon about caring for a parent who didn't care for you. I forget the title, sorry. My sister hasn't seem my mother in 25 years. I am learning boundaries and how to save myself thanks to advice from support groups and a counselor. You might benefit from a therapist to make decisions and get through this.