My mother used to live with me and my family (husband and 2 children). She had a stroke in 2021 (at age 66) that left her completely disabled: right side of her body is paralyzed, she lost the ability to effectively communicate due to Aphasia. She can no longer speak, read, or write. When we visit her we have to play an exhausting and frustrating game of charades to figure out what she’s trying to say or ask us. My older and only sister suffers from mental illness and was diagnosed with borderline personality disorder so her toxic behavior has made the situation with our mom that much more difficult and stressful. Imagine trying to work with a ticking time bomb not knowing what will set it off. That’s what it’s like being around my sister. We haven’t spoken in over 3 months and she’s left me holding the bag in terms of overseeing our mother’s care. We unfortunately had to place her in a home sense she requires 24/7 care. I handle all referrals, phone calls, interdisciplinary meetings, appointments etc. I work full time and have 2 adolescent children who need me. I feel torn and guilty ALL THE TIME thinking about my poor mother trapped in her own body and wasting away in that terrible nursing home. I cry a lot, I have anxiety, and wake up in the middle of the night sweating and hyperventilating. I hate having to go visit her because it’s so devastatingly painful! I get angry that she did this to herself. She was a lifelong smoker who had begun to feel the effects of her smoking. She had a heart attack 5 years prior to her stroke and kept smoking. She had COPD and sometimes struggled to breathe. Other than that she was in pretty good shape. She was thin, very active and had plans to travel and enjoy her retirement but she continued to smoke against the advice of her doctors and her loved ones. I feel she did this to herself due to her selfishness and belief that she knew better than everyone else. I hate her for that but love her so much it hurts. She was an amazing mother and was my best friend and I miss her so much but whenever I think about going to see her my heart races, I feel sick and nauseous and feel depleted. I usually visit her every weekend but I haven’t gone in 2 weeks. All I do is pray that God takes her to give her peace and all of us peace. I feel like such an awful person for praying for that but it’s just so horrible witnessing my once super active mother deteriorating in a wheelchair when she should have been enjoying her golden years as she is now only 68. It’s just a feel of never ending torture of grief that I cannot overcome. It’s like grieving her death but she’s not really dead. I just don’t know how to be a good daughter, mother, and wife all at the same time.
I agree with others to stop blaming your mom. This serves no purpose and you don't really want to be mad at her. Shift to accepting that this happened to her, for whatever reason, and here you are.
Your sister with BPD is going to be of no use. Accept it and move on.
You have a lot on your plate. Unfortunately for your mom, you and your children come first in your life.
It's OK to cut back on how often you see your mom. With your busy life, going every weekend is too much. Go less often (every other weekend?) and maybe that will relieve some of your anxiety.
I also agree with looking into palliative care. I don't know what kind of care and meds she is receiving now but I would do NOTHING that will extend her life. She unfortunately has a VERY low quality of life and I would not wish that on anyone.
Best of luck.
I’m not good at all with new tech options, but I wonder if you could set up a camera at your place, say in the kitchen, and have it show on a TV in her room. Either live, or with recorded segments. Then she could see you going about your life, occasionally looking at the camera and smiling or waving. Perhaps the children could do the same. A while ago we had security cameras that provided recordings of who came through the farm gate, and DH viewed them on his computer, so it could well be possible to do this. Something like this could be interesting for M, and let you cut down the visits to something that is bearable.
Best wishes to all of you, Margaret
Of course you hate to see your mother like she is. Who wouldn't? But you must now do what is best for you, your husband and children, and if that is only visiting once a month, well so be it.
The damage has already been done to your mother from her stroke and you now must come to some sort of peace about it. Yes she shouldn't have continued to smoke, but nicotine is a drug and highly addictive, and quitting is much easier said than done.
You can't change what's happened but you can learn how to deal with it. Perhaps talking to a therapist or counselor might help. Even a grief counselor as what your now experiencing is anticipatory grief, which is the grief we experience before our loved one actually dies. That can go on for many years.
Your mother didn't take good care of herself so make sure that you're taking care of yourself so you don't end up like she has.
My late husband(who also was a smoker)had a massive stroke at the age of 48, which left him paralyzed on his right side and unable to talk, walk, read and write. Thankfully with lots of PT, OT and speech therapy he did learn to walk again with a brace on his leg, but never regained use of his right arm, nor could he ever read or write again. He eventually could say small simple sentences and some words, and as time went by I became a pretty good mind reader when it came to trying to figure out what he was wanting or trying to say.
But that took me a while and also took a lot of patience, so be kind to yourself.
I took care of my husband until his death in 2020 at the age of 72.
I pray that God will give you peace and acceptance in what is now your "new normal" with your mother.
God bless you.
You aren't responsible for this. You didn't do it and you can't fix it and you aren't a Saint who has to throw yourself onto some funeral pyre to die. Your mother has had a devastating stroke and that is that. There is nothing to do about that and there's likely now, years later, not to be a lot of improvement.
So let's move on to things that DO matter. Who is guardian for your mother? What are her finances? If she is in care is she in the best care she can afford, or in decent care through medicaid? Are you her POA or her guardian. If not, you need to become the latter.
Nothing can be done about sister. Take her off the plate as well.
Now you are down to a seriously debilitated Mom who will likely not live a normal lifespan. Her life is a misery and I would not go overboard in attempting to prolong it; I would discuss palliative care with her MD and Hospice when it is time.
Meanwhile visit, hold her hand, watch TV, wheel her outside to watch the grounds or whatever you can think of to help her. That's IT. That's all you can do. I know people in their 30s with devastating illnesses due to stroke, ALS, and etc. These tragedies come to humans willy nilly. You need to take care of yourself and enjoy your life and your family as you have an example of what can happen at ANY SECOND to ANY ONE of you.
Seek psychological counseling to help you stop this habitual haranguing of yourself and others. It is time to set goals for your own future life so that you can have some peace and some joy. This that you are doing to yourself is not helping anything or anyone, least of all your mother.
Avoid Sis when able and tell her you do not wish to visit when she is visiting. No discussion; no argument. If she insists on knowing WHY tell her because you are a b---- and you can't stand her.
Most of this is not, never was, and never will be in your control. It is time to take control of what you are able to.
You can make your mom a book of pictures-things she might want, want to do, go, etc. Cut pictures out of magazines, take pictures with your phone and print them. She can then point to what she needs.
It's a devastating situation. My sympathy.
There is a phrase that is often used here: “Not everything can be fixed.”
Remembering that gives me peace.