Hi, I am a long-time caregiver for a mom who has had BPD all her life (untreated by her wishes) and now has dementia. I took care of her by myself for as long as I could, the BPD presenting significant challenges to which dementia was added, perhaps 10-12 years ago based on signs I'm seeing in retrospect. She's been mostly bedridden for the last 7 years, with me nursing her, basically her full-time CNA. I never left the house during the COVID years. Ten months ago, she could still walk a little and I couldn't stay awake 24 hours a day (there was never anyone to help me). She got out of bed in the middle of the night, terrified intruders were in the house. Before I could wake and get to her, she was down and had broken several bones. Her next stop, after the hospital, was a rehab facility where she refused to have anything to do with physical therapy. After about a month, she was transferred upstairs to the SNF, where she has been ever since.
I'm going to come right out and say it, I let her manipulate me for decades before the dementia. Her BPD meant she was terrified of abandonment and she constantly threatened suicide if she couldn't be with me ALL the time. I tried, unsuccessfully, several times to get away and have my own life, but she parentified me from an early age and programmed me to feel guilty if I tried to escape. I knew I was being manipulated, yet I couldn't get myself to abandon her because she could never figure out to do anything on her own, couldn't hold a job, has never had a friend that I know of, and it felt wrong to ditch someone who is family who can't take care of themselves. My life has not been the greatest.
Since her admission to the facility, I have visited her every day. I tried getting a part-time job and working my visits around the work schedule (never the same hours) I was given, but without me there on a consistent basis, she stopped eating and lost so much weight the decision was finally made to place her in hospice care. I quit my job and now visit her at the same hour staying with her 2-1/2 to 3 hours daily. I haven't missed a day in months, even when the entire facility came down with COVID, including my mom.
To make things worse, my mom has recently become violent and abusive, screaming, cursing, hitting, and pinching people. She spits out any medication she's given because she thinks it's poison. I'm told she can scream my name for hours and throws things to get attention. I hadn't seen this myself, but tonight, she let it all hang out, throwing, cursing, and—when the nurses wanted to talk to me out in the corridor—she proceeded to tear up a handwritten notebook I'd created for her, wadding pieces and flinging them around.
When it was time for me to leave she pleaded, begged hysterically for me to stay. I told her I was sorry, but I couldn't, I really needed to get home (I'm trying to build an online business and that requires work). She grabbed me and wouldn't let me go. I told her I loved her and gently freed myself. As I left, I was treated to her screams following me down the corridor.
The nurses today let me know that since she refuses meds they will need to give her injections in her rear end, which is fine with me. I don't want her hurting herself, her roommate, or any of the staff. However, I'm not sure what to do to help her. Her emotional state, her clinging, and the same fears I have to calm every few minutes because she forgets, her constantly telling me "I loved you," (past tense to dramatically demonstrate to me that she's dying), make me wish I could just leave and never go back. She's my mom. I love her, I know none of this is her fault. Still, I'm exhausted.
Has anyone been in this position? How did you cope? What is the responsible way to handle this?
Stay stong!
I think you need to take a break and not visit so often. She may need to adjust to not seeing you so often and then she might calm down a bit. This behavior is not uncommon in dementia. Sometimes visits are more disruptive than no visits at all.
set up a meeting with the medical director and see what they recommend. They can often help set up a visiting schedule that works for your Mom and for you.
You are doing the best you can under difficult circumstances and you need to remember that sometimes things cant be fixed.
Please stop spending SO much time subjecting yourself to such a thing. There's nothing you can do BUT speak to her hospice team about calming her down FOR BOTH OF YOUR SAKES. Then leave this issue in God's hands to resolve as He sees fit, hopefully sooner than later.
Good luck to you
Can you not now understand that these daily visits of yours may actually be harming your mom? That they are causing her to feel desperate and out of control?
Do speak to the team at your Mom's facility. Tell them that you are cutting back for three or four visits a week. Then assess how she's doing with that If OK, then you try for 2 or three visits; that would be a good thing, reassesseding each time.
Meanwhile you need a GOOD psychologist, perhaps a licensed social worker in private counseling practice to help comb out the enmeshment that has happened with so many years of care. You need to be shaken up out of habitual ways of acting and reacting that are not working. At this point you two are so joined at the hip that what one feels is almost instantly mirrored in the other. Not a good thing.
I am so sorry. You didn't cause your mom's mental illness and there is no way you can fix it. As you can see, your trying to make things better may be having the opposite affect. Your mom has had an unhappy life, likely through no fault of her own, and CERTAINLY through no fault of yours. The end of her life, like all the rest of it, shall just have to be endured. Happiness cannot be a goal for her. My heart goes out to you.
First, that if she gets hungry - she will eat. And second, that it is not necessarily important that a person get every single nutritional requirement in in every single meal - as long as it balances out over say a week or two.
I'm not saying that texture, temperature or taste are your mother's issue here of course- I'm just saying what others have said - if she is hungry enough - she will eat.
Dementia or not, your mother has a long history of manipulative behavior to keep you in line. And YOU are used to staying in line to keep her behavior under control. You completely changed your entire life to make sure that HER life was regulated. That carries over into the current situation - and now because of the dementia - there is little that YOU can do to control it. And there is also little that she can do to control it either - as you said, but dementia exacerbates in many cases the behaviors of personality disorders.
She is where she needs to be now. You can breathe a little bit.
As others have mentioned- I'm going to take this back to my daughters when they were young - because I think the elderly- especially with dementia - are very childlike in so many ways. When they started daycare- we could stay a day or two with them for a few minutes each morning to allow them to adjust at drop off. Then after that - we were expected to hug and kiss and mommy/daddy will see you this afternoon, we love you, wave and out the door. Did they cry? Sometimes when we were walking out the door. But they usually calmed down as soon as we were out of sight. I guarantee you though if we had stayed for several hours every single day - that they would have cried the entire time we were gone. And that the longer we did that, the harder it would have made it - for all of us - to finally just start hugging, waving and leaving at drop off.
I know it is not exactly the same thing - but in many ways it is. It is hard for both of you. But you aren't giving her time to adjust to depending on them. And dare I say, you are at loose ends and don't really know what to do either. But you've got to stay away and let her get used to being there without you. Many places don't want family visiting for a week or two AT ALL to give their loved one time to get used to the care facility and the caregivers without the family being around.
You ask what is the responsible way to handle this? I know you are worried that you are doing something wrong by leaving her there - first - let go of THAT notion. You aren't. And then take a break. Let them do their jobs. Talk to them about how long would be a good amount of time to NOT come to give her time to adjust. Let them do what THEY need to do. You do what YOU need to do. So that SHE can do what she needs to do.
Caregiving has very few right or wrong answers absolutely. You learn as you go. But one of the absolutes is if you don't take care of you, there won't be anyone to take care of them. Take a step back. She is where she is so that you don't have to be taking care of her every minute of every day. Now it is time for YOU to actually realize that you can do that.
1. How old is your mother, and how old are you?
2. Do you have siblings?
3. Was your father ever in the picture?
4. Have you been able to work during all the years of caregiving?
5. What is your financial situation?
You are concerned about your mother. I am concerned about YOU.
2. I have two half-siblings. They are my only living family, but we have been estranged for decades. My brother has a severe mental illness and stalked us for years. He believes my mother is part of a conspiracy against him and ended up targeting me instead because he wisely figured out I was her only financial support. He alluded in notes on my car to his desire to decapitate me.
My half-sister ran as far away as she could get, leaving with her boyfriend when she was 16. We had intermittent contact for a few years, but we just weren't meant to be sisters.
3. My father was a privileged son of a celebrity and an alcoholic who when it was time to take my mother to the hospital to give birth, walked out instead of driving her there. They divorced when I was a baby. I met him when I was an adult. I don't hate him for abandoning us. It was probably a good thing he wasn't in my life growing up. He wasn't father material.
4. I worked consistently in my 20s and 30s, supporting my mother and myself financially on a waitress income, but by the time I reached my 40s, I was having to give up more and more time away from home due to her acting out. I made a low yet survivable income selling on eBay.
In my late 40s, I went back to college and finally finished my degree after having to abandon that at age 20 to work full-time as a waitress supporting my mother and sister (who was 15 and still with us at the time).
I hoped getting the degree would lead to better things. Unfortunately, my brother's stalking escalated around the time I graduated. We were advised by the police to go into hiding.
To complicate matters, my brother bought my .com domain name. He put up a website about me with a lot of ugly, fabricated stuff that any employer searching my name would find as it was the first site listed on Google. It didn't matter whether a prospective employer believed what they read or not, they would see I had serious personal problems. The website was up until only a couple of years ago. That was the worst, most traumatizing period of my life, but looking back I realize it didn't really matter. My mother was already spiraling downward about the time I graduated and I wouldn't have been able to work outside the home anyway.
5. My financial situation is not good. I have less than $20 in the bank. This week, I made the difficult decision of applying for Social Security. I'd wanted to wait until 70 because what I'll be getting is so little. Still, it will be enough to pay the rent and one utility bill each month.
6. I am beyond exhausted. If I had the money, I would flee home to California. I haven't seen home in almost 30 years. It's my dream to get there. In my fantasies about it, I find a little studio apartment for me and my cat, and live a quiet life of slowly, steadily building my new online business. I would have enough money to give myself a year's respite to just breathe and find my bearings again.
She will eat if she is hungry. When dying, body functions start to shut down and eating actually causes excruciating pain.
Is it possible that she is screaming in pain because she has eaten?
YOU have a responsibility towards HER, AND towards yourself, to address the emotions that you have that have linked you to her as you are linked now.
I have not only been in YOUR situation as it is NOW, but I have been this enmeshed TWICE, with 2 of my dearest LOs, and slightly less so in a THIRD situation with another.
And from these situations, I have learned that you MUST allow the caregivers in the facility to become MORE IMPORTANT, as you become LESS, and that ths transfer CANNOT HAPPEN until you sever it.
You not only CAN “just leave”, you MUST do so. Every extended (and non-productive) visit you make to her is like applying g the bandaid, then ripping it away, for you BOTH.
By the time my mother finally entered residential treatment, I weighed 265 pounds (5’4”, SMALL FRAME). Trust me, it was not “Happy Weight”. It was an outward symbol of my misery.
You have PAID YOUR DUES, and you deserve better. You have placed her in a safe environment that can comprehensively care for her many issues.
Good caregiving NEEDS balance. Take some time to think about where “the balance” is FOR YOU. Then PLEASE take steps to find it.
She has dementia, a life-limiting, progressive disease. She's on Hospice, so by definition, is at the end of life stage.
You say her BPD was not treated, by her choice. That doesn't mean that you were/are obligated to be her treatment plan.
Yes she may very well die from her refusal to eat but honestly your mother is living a hell induced life with her untreated BPD coupled with dementia.
Why would you want her to prolong her suffering so she can die of more natural causes?
You must be exhausted having delt with mom like this for decades.
Eventually the facility will have to medicate her into a stupor so she doesn't freak out when you are not there.
Her dementia only makes all her fears worse. I have read stories about people who get dementia who relive childhood trauma over and over like it was happening in real time. It is truly horrific.
"Boundaries" by Townsend and Cloud.
"Never Simple" by Liz Scheier. Liz's mom had BPD.
Stop visiting every day. Go once a week. Same time, for predictability. Bring a treat for her to eat. Massage her neck, give her a manicure and then leave.
Get a job. Get a therapist. Take back your life.
This is doing no good at all to anyone involved – you, your mother, the staff, or the other residents who get to hear the screaming. Stop adding to the chaos.
Suggest the staff inject sedatives. If you want, go and see her through the gap in the door so that you know she is OK. Going in won't help. Give her a week to calm down. Then if you wish, try a very short visit once a week.
Remember the things about the past that made you love her. Not the things now. I’ve just finished reading that same advice in ‘Done With the Crying’, the wonderful book for estranged parents. Think of good things in the past that were genuinely lovable – not this awful time!
I am new to the forum, but I wanted to offer a point of view regarding BPD. My mother (alcoholic, Valium abuser with unmediated BPD) was verbally and physically abusive, and it was exhausting. She died four months ago, and I’m now taking care of my 85 y/o father with Alzheimer’s.
I imagine you’re beyond exhausted. Since your mother is being cared for in a facility and there is little else you can do —take good care of yourself. Eat well, get an abundance of sleep and rest, listen to music or a podcast, call a friend, read a book, color, or attend a church service. Do something that brings you peace.
I’m sure the thought of slowing down and caring for yourself feels selfish; however, before we can care properly for others, we must tend to ourselves first.
Lifting you in prayer; praying for your peace, and relief from anxiety and guilt. Also trusting the Lord to grant your mom His perfect peace; patience, wisdom, discernment, and kindness for her caregivers and medical team.
You have given so much of your time and energy to your mom. It’s time for you to give yourself the same amount of attention that you gave to her. You have earned it!
Please give yourself permission not to visit as often. She has a staff overseeing her care and she will receive medication. Trust their judgment.
You’re a loving and caring person. Of course, you love your mom and realize that she has a mental disorder which is the root cause of her behavior.
You say that it isn’t ‘her’ fault. It’s not ‘your’ fault either. It’s not anyone’s fault. Her behavior still needs to be addressed and treated.
Hopefully, she will respond reasonably well to her meds and once her symptoms are manageable, you will be able to have a peaceful visit.
At the very least, go back to work. You have just one life and she has taken up all of it. Now it’s YOUR life and YOUR time. She is mentally ill. You can’t help her with that. She is getting care she needs and there is no need to rush to her aid daily.
The last thing you want is to be mom’s age and feel like you never had your own dreams or accomplishments. That would be the most tragic thing of all.
Please, it’s time for you to focus on you now.
She is being cared for by professionals, and you need to take care of yourself. So sorry.
If each time you leave she is acting as in your description, then your visits are very hard for staff as well.