I used to think regret was the hardest thing to experience - the avoidance of it drives me, as I suspect it does many of us on TN. I’m coming to realize that regret isn’t the worst thing to feel; it’s helplessness.
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I think what I’m feeling is the triple threat of helpless, hopeless and useless. It comes and goes in waves. The initial grief of the diagnosis was overwhelming. Then there came a level of acceptance and the knowledge that this is the new normal. I think that when there is “an incident” or when I notice a new level of decline it triggers grief which leads to anger (usually directed at my father) which leads to my brain being overwhelmed. That’s where I am now. As with all things, this too shall pass.
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1-12-26
Figured I would update walking my mom home. The good news is that it appears we are not making any progress home. I took her to her Neuro appointment a few weeks ago and he feels she is at the same point she was when he saw her last year, so no progression of Parkinson’s. She has upped her medication though, and will likely add a new med in a month or so.
I do most of the daily cooking and she adds in dessert or cooks when she wants something she makes - I can make most of her repertoire, but it’s not the same. As a kid we were tight financially - three boys in three years - and when we had steak it was round steak, lol. Now, she gets tired of chewing so I get ribeyes or tenderloin (I buy the whole thing and cut it up to save money). We are blessed with wealth from my middle brother that passed in 2001 but old habits die hard. I just picked up two ribeyes for tonight.
One of our frequent discussion topics is what is for dinner. After dinner we congratulate each other on keeping ourselves alive for another day. I got home from my morning routine yesterday and she was not up yet - a radical change from our usual routine. She is usually up by seven to take her meds and sitting in her recliner by the time I get back. It was almost nine and I didn’t see her or hear any noise from upstairs and my mind went dark, I was sure she had passed. I didn’t want to wake her up if she was sleeping, but I also wanted to check on her. But I waited a bit and my mind started in on dealing with the house and her financial affairs. Not unrealistic considering the death of my father and oldest brother in 2025.
My father was a difficult relationship for me. I know he did the best with the tools that he had, but he was not a good father for me. His father was absent, WWII so he had no role model. He was ill the last fifteen years of his life and my mother took care of him. The last two years were particularly hard on my mother and I moved home last year to help her. He was not grateful for the help and generally angry at life. He had temper tantrums and lashed out. Particularly at my mother. Those episodes triggered me greatly. And then I would feel bad about being angry at a sick old man. I have no answers. But, you are not alone.
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That’s wonderful news. I’m very happy to hear it.
Just got off the phone with my Uncle. He thinks my dad is in the beginning stages of Alzheimer’s. I told him that I have a hard time with my dad because we have a difficult relationship. He told me if it helps, my dad always speaks of me with praise and says how proud he is of me. My brain is a bag of cats. I can’t make heads or tails of my thoughts. I think I’ve reached my limit for the week.
I have always needed “time outs” to reset my compass. I’m an empath/HSP/Sissy, however you want to cut it. Taking time to myself to meditate or to nap is a necessity - you have to put your mask on first.
I would invite you (therapy speak) to meditate (walking, eating, sleeping, or traditional) and refresh so you can support others.
Interestingly enough, despite my limited bandwidth, I show up big in times of crisis - hyper-focused, calm, patient. I suspect you have some superpowers yourself.
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I truly appreciate you encouragement and compassion. I’ve been alone all day at home. You made me feel less so. 
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The power of inappropriate humor.
My sister called me crying yesterday. Apparently she called my dad’s phone and my mom answered. She asked for dad. Mom didn’t know who that was. So she asked for him by his name. Still no comprehension. So she finally asked for the man that lives there. My sister was crying and telling me how hard this is. I said " I know it is. But can you imagine how much harder it would be on you if you had been her favorite?" She chuckled softly, said “you’re an asshole” laughed a little harder and said, “thank you, I needed that.” She felt better when we got off the phone. The best part is that I know my mom would have laughed too. Her sick humor carries on I’m my sicko little brain.
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Opened up some memories for me with this post. I appreciate the dark humor greatly.
I’m learning to hold space and not try to “fix” things. But, I thought my experiences might help.
My maternal grandmother had dementia towards the end of her life. She did not recognize my mom or us grand kids (except for my brother Murph who was her favorite) and the last few years were loaded with grief despite her still being alive. We, or at least I, secretly wanted her suffering to end and I felt shameful and selfish over that feeling. Now, I recognize this as natural, a part of my “shadow” and have learned to lean into the parts of me that I don’t necessarily like.
I went through similar feelings with my father. Our relationship was difficult. He was sick for the last several years of his life and my mother basically kept him alive the last five or ten years - to her detriment. She is in her 80’s and has Parkinson’s, as previously mentioned, and taking care of his needs was exhausting for her. I resented him for the choices she made. Eventually I became aware that our difficulties were a result of both of our personalities and formative years. His father was gone to WWII for the first many years of his life so he had no role model. When his father returned, he came in with Lieutenant Commander energy and treated my dad like he treated the enlisted men that served under him. Appropriate for them, but not for a ten year old. It was easy to forgive once I put myself in his shoes.
I moonlighted for a friend of mine that owned a catering company in Orlando. I tended bar at a party for one of the theme park’s cast members - all aspiring actors and comedians. It was about a month after my brother passed and it came up in conversation - “I lost my brother last month.”
“Did you look on top of the fridge?”
It was too soon, but it did help.
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I think one of the reasons my sister comes to me is because of my dark humor. She knows that sometimes I will give her genuine advice that is thought out and usually fairly balanced. I tend to be a bit more logical than she is. She is more of an emotional responder than I am. But I also know when she needs the tension to be broken. Usually that’s when I come out with something ridiculous. When my mom was first diagnosed my mother was devastated. I talked to her for a while and helped her kind of work through her feelings (and mine). Then I told her that the bright side was that now she could tell the people that she didn’t like to fuck off and then blame the disease. She laughed so hard I thought she was gonna pee her pants.
I feel this all the time. I can’t tell you how much I don’t want her to end up in a home. I don’t want to say goodbye to my mom, but I also hope that one morning she just doesn’t wake up. I hope that her life can end in the home she built with the people she loves near her. Not in some Alzheimer’s until where no one truly loves her. It’s a complicated feeling to love your mom so much that you secretly hope she passes sooner than later. I guess maybe that is the mark of true love? You would rather suffer the pain of the loss than watch the person you love suffer. Or maybe I’m just selfish for not wanting to see her this way? Probably a little of both I suppose.
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Been following this log for a while and it’s providing some food for thought, thank you for sharing your thoughts and experiences.
My daughter has a rare illness which is basically childhood dementia plus some internal organ degradation, I grapple with this thought process every day. My biggest fear is that she dies without knowing how much she was loved by the people around her. Whilst I’m absolutely not ready for her to die and of course never will be I don’t want her to degrade and suffer more and more as we march towards the inevitable.
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I don’t think I have words for this. I can’t imagine how horribly painful this must be for you and your family. I’m so sorry. I hope, if nothing else, it helps just the tiniest bit to share. I’m glad you did.
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My son was about fifteen when he told me that we are all dying. It’s just that we are all on different schedules.
Your post was painful to read, and I have no words for you other than to share what has helped me. Obvs, watching my mother age relatively quickly is difficult, and does not compare to your situation. But I have learned to view these challenges as gifts rather than burdens. It takes some effort and might feel like spiritual gaslighting, but it has worked for me.
With my mother needing assistance, it has given me the gift of re-connecting with an extremely important person in my life in a meaningful way. We are the last two and we get a lot of time to share - I am in recovery, I chaperone her to medical appointments, we shop for senior living together. This is the gift the universe has given me. There are so many others that I can’t begin to list them.
Control what you can control is a tenet that keeps me straight. I moved out of my marital home when my kids were young but knew that if they knew they were loved then they would be okay. Letting them know that they are loved has been my primary goal with them. I can control that.
I appreciate you sharing and following!
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Thank you, it’s not often I do share which I suspect is so as not to burden others with what goes on in my head.
I have come to this way of thinking myself, we enjoy the days when she is having a good day and roll with it when things are worse. I would say her illness has given me a sense of purpose as it’s evolved over the past few years from pre diagnosis to present day. I definitely appreciate the empathy and understanding it’s given me.
100%, I can’t stop her illness but I can give her my love and care unconditionally. I can give her medications before 5am everyday and play my part in doing what I can
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My head is a terrifying place to be on occasion. I can confirm that a random woman on the Internet who over shares her pain with the world on a fairly regular basis wouldn’t see it as a burden. Just in case you ever feel the need to let some out.
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I like how this thread is developing. I like creating a container. I appreciate that it offends those that are offended by the term toxic masculinity.
My mother flipped the script on me two days ago and agreed to rent a 2/2 in a senior living facility nearby, so we are moving and selling her house.
Pretty huge move on her part.
So now sell the house and clean out 65 years of posessions.
Life is good.
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This is always so sad to me. An entire life that comes down to “keep, sell, donate, garbage”. I’ve been working towards cleaning out all of my crap. I don’t want to end up surrounded by endless loads of stuff that my kids need to clean up when I’m gone. I also just don’t want that much stuff. I suppose though, I’m at the mid point of life, not at the end. Assuming that life goes the way most people expect it to. So maybe my philosophy on becoming more minimalist will change as I get closer to the assumed end.
I hope this goes well for you both. Hopefully the simplicity will remove some stress and help the two of you to enjoy time together. I’m glad a decision was made. Sometimes waiting is harder than anything else. Now you know what the goal is and you can move forward.
On a semi related note, I have to plan a trip East soon. My sister desperately needs a break, and we need to look at nursing homes for my mom. Sigh. I hoped it wouldn’t come to that, but I just don’t think my dad is capable anymore.
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The deal is done. We take possession of the 892 sq ft 2/2 on February 28th and we are ambivalent. Apparently there is some demand for a 2/2 so we had to take it before we are ready, but that is okay.
We decided that we won’t be burning the boats - we will keep the house for at least a month as a fall back.
It seems to be huge money to me, but I guess that is the blessing of having worked for a lifetime and stashed cash for the future - which is now.
My mother’s Parkinson’s is progressing. Slowly. She used to take two pills every four hours. Now it is 2 1/2 pills every three hours. This is not unexpected. There are options moving forward.
Craig is the Community Director and he refers to it as the cruise ship on land. Two meals a day, bingo, mah jong, yadda yadda. I feel guilty because I can’t wait to travel knowing my mother is taken care of.
Currently away for eleven days and worried about her eating and falling, feel like a schmuck for leaving.
Getting old ain’t for pussies.
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I’m sure she wouldn’t want you to feel guilty but to go and enjoy it, easier said than done though!
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Appreciate the thought. It is an interesting dynamic - she is not too far ahead of me on the road home. There is only twenty three years between us. We discussed this before deciding on getting a 2BR unit in the senior living residence. She wants me close to her (and I reciprocate) but wants me to travel.
It has been a rough life for me as the youngest, mostly self inflicted, and she knows it. She also knows that my journey is coming to an end and wants me to enjoy it while I can. It is a difficult balancing act.
Overwhelmingly good though!
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I’m all packed up to visit my parents for the weekend. I’m dragging my feet to get on the road. My sister comes to me to help give her strength dealing with it all. What a fucking joke. I’m a coward if I’ve ever met one. I’m afraid to go see my own mother. I know she is worse than the last time I saw her and I don’t want to see it. I have 9 hours in a car to put on my big girl face and pretend that I’m competent and able to deal with it all. Time to pretend that I can be useful. At least it gives my sister a sense of security and a little bit of a break to have me there. So I guess there’s that.
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