anger at my wife, my sister, my doctor(s), my brain, my "friends"
I'm sitting here in my basement home office (aka "the dungeon", adjacent to the washing machine and dryer) at 5:30 am central time…shaking with anger and grief at all of the above. I guess I brought it on myself, being the go-to person for planning vacations, running errands, loaning money to my spendthrift sister, and acquiescenting to a medical enterprise that tells me that they can see me in their office 125 miles away…on August 7, 2027.
I hate this life. My wife treats me like a servant and the worst thing is that I take it, until the anger bubbled out and I raised my voice to her…she threw a tantrum, saying she couldn't stand it when I yelled at her. Of course, I apologized later and tried to explain that it's the plaque around my brain that makes me insufficiently sympathetic. My sister is traveling throughout central Texas (where I am not located now), having unprotected sex with old men and forgetting that I sent her the $11,000 to her to save her house from foreclosure.
I hate my life. I read the posts (most of) you guys write and you sound like you're taking good care of yourselves and keeping your spirits high, and I was that way since the Alz diagnosis. For quite a time since, I was trying to be the all-together guy who was fighting this thing and otherwise keep doing what I've been doing…being Casper Milquetoast and trying to please everyone.
Oh, I nearly forgot about the "support group" for Alz and other mild dementia folks. I attended my first group meeting a couple of weeks ago. The well-meaning social worker's program for that day was that she had a deck of cards, on which each asked us to tell the group about a memory we had for various situations, like a memory of a good day with our families. When it came to me, I said it was of my mother, who carried a fly swatter around the house, killing bugs, and saying as she dispatched them, "Go see God." Had I noticed that more of my wits than I had, er, have, I would have noticed that four of the five fellow group members were wearing gold crosses around their respective necks. That brought things to a screeching halt, as any skunk would. I thought about trying to explain that my parents believed in the Church of Mimosas for breakfasts on Sundays. All of the others had shocked and disgusted looks on their faces. (I should explain that while the university town I live in is 25 miles from the meeting…25 miles and a million hectares apart.)
Welp, if you're still reading this pity party screed, I appreciate your solicitude and if the vote is to vote me off the island, then so be it. It's 6:24 am central and a mimosa sounds pretty good except for the fact that I'm no champagne guy, and it's too early to break open the pre-made margaritas.
(Coda: I'm sitting here, deciding whether to erase the above. Naah, too much fun writing it.)
Comments
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'Go see God' is hilarious! I'm going go say thst to the spiders when my husband sends them to spider heaven. Some Christians are so uptight they csn't take a joke. Sorry you had thst experience, you did nothing wrong btw.
No more money to your sister! it sounds like she has a job, (if you know what i mean).
Hang in there. You just need to make some small changes, like putting yourself first, because darn, you deserve it.
Sorry for misspellings….plaque and tsngles you know!
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Hi, meezls4833!! First off, I find you absolutely hilarious!! Self deprecating, sarcastic humor, desriptive prose of the absolute shetshow you find yourself in. I love it!!, and I think you are going to be just fine, in my humble opinion.
Personally, i think that you would be a great person to be on the island with. When i first got my diagnosis about three or four ago, I don't know exactly because I can't remember shet, lol, I was sooooo ticked off i could have spit nails and I went into a great big pity party, very dark depression that lasted quite awhile. I dont remember how i got out of, (because I have Alzheimer’s and I cant remember shet) but i did because i am still here and i am still fight this bit*h called Alzheimer's like my life depends on it, because it does.
I live alone except for my freeloading roommate, my cat, who allows me the priveledge of living in her house so long as i keep paying her mortgage. I still drive, recently went on a road trip with a friend to see the country and we drove from AZ to MD and had ourselves a grand ol' time. I take myself to all my Dr's appointments, socialize eith friends regularly and basically just living my best life.
Elisabeth Kübler-Ross wrote that there are 5 stages of grief: denial, anger, bargaining, depression, and acceptance. In my humble opinion, it sounds like you might be in stage 2, lol. I promise you you will get thru all the stages, or just skip the rest and end up in acceptance. Acceptance, at peace with knowing you are powerless to change your diagnosis, which then gives you this... at least for me... this tough as nails, hit me as hard as you can and I am still getting backup bit*h, grit, fuc* you attitude with which live my life. Yes, the first several "support" groups sucked eggs, but i did find this seminar thing called H.O.P.E. which met once a week for several weeks for people with early stafe Alzheimer's. It was terrific because was kinda structured and there was a point to it and very helpful, but it was the first time I was in a room with peeps who knew what I was going thru, how it felt to be in my skin, and we could commiserate and console each other because we all had been there, done that. So, here finally is my advice. Search for the best neurologist in your area that specializes in Alzheimers. See if there might be some kind of structured support group for you in your area There are a bunches of meds that can help with symtoms like Galantamine, Memantine, Donepezil, (I am taking all three) but there may be others i am unaware of. Additionally, my neurologist got me started on a infusion drug call Leqembi which is an actual drug that intervenes in the progression of Alzheimer's be removing the plaque from the brain. I have taken 20+ now infusions which occur every two weeks. It has helped significantly!!! I feel more clear headed, less foggy, and my latest Pet scan or cat scan ( i cannot remember which lol) showed less plaque in my my brain than there was on the prior image and I still have 20ish more infusions before I go on a maintenance dose that I am guessing will be forever. Anyways, I have rambled on long enough and I am sure i have now put people to sleep. Looking forward to hearing from you again. Hang in there. GEH
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Mochas gracias, SilverVoyager and GEH for your energy-giving encouragement! Well, that and the amazing bouquet emanating from the slow cooker of my mother's recipe for pinto beans, simmering since 8 am (no flies in the recipe!).
So now, I need to tend to my beans. ¡Adios, senoras!
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Your responses were like manna from, well, wherever manna comes from. Y'all collectively put a grin on my face that even three morticians couldn't get off...figuratively speaking, of course.
Best, meezls
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I am so glad we could be there for you and help lift your spirits. You will have some bad days going forward, but your positive, self deprecating sense of humor and your grit will get you thru them. And remember we all all were for you to p&m to, or to share triumphs with or for you to welcome another newbie, sharing your story, and you will be able to tell them that they too will be able to get thru it. I love your sense of humor, and your joy for life. Please post here regularly, if you can. Best to you.
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Sounds like you do need to get off the island. Not our island but yours. If you have the means maybe you should move to an assisted living facility. If things are this bad now they’re only going to get worse as time goes on.
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I was just checking in on you meezls4833.
Keep on coming back and writing. We are here to help you through the bumpy journey. I would venture to guess your wife is scared of the future, as you probably are. Support groups are great, IF its the right fit for the both of you. I know in the beginning our our adventure is wasn't a fan of support groups - then I relaxed an realized I don't have to say a thing if I don't want to. At one point we were attending 3 support groups at the same time! (And I did find my voice there!)
eagle
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I so relate to this. Not saying much more because the full self-disclosing rant I posted fell into iPhone oblivion and I just don’t have the space to type it all again. But I do have questions:
Did friends and family seem to under-react to your preclinical AD diagnosis? If so, I’m wondering if you could share how you process this.
After your diagnosis, did your neurologist provide any sort of “what to expect” information?
Does your spouse “get it”?
Did you never hear back from one of your longest friendships after giving her the news?
I’m just so damned confused and sad!1 -
Yes, now that you mention it, all my friends just kinda said "oh, okay.. thanks for letting us know" Nothing like, how are you feeling about that, or, you must be scared or ???? And weirder yet, have never spoken about it again. It was seriously weird to me (and hopefully, not how i would have reacted if the tables were turned, but you never know.) Does anyone have understanding as to why your best peeps woukd react this way??
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Seriously dude?? Have something constructive or at least benign to contribute or stfu. It appears that the air you inhale is being wasted...
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Hi Holly. First, thanks for posting the questions, as it helps me frame things In response:
"Did friends and family seem to under-react to your preclinical AD diagnosis? If so, I’m wondering if you could share how you process this." Well, to answer that, I have to disclose that the only DNA family still on this side of the dirt are: (a) mostly still living in Texas, the last time I saw any of them was at my stepmother's funeral, about a year ago. Sister's subsequent input WRT was primarily about going into a memory care thing. I'm definitely not there. As for friends, there's not many, me being a nerdy, introvert kind of person, but there's three good friends from my last workplace; we meet about every three months, and they certainly buoy my spirits. I do have three very good friends and former coworkers from where I worked before retirement who say and do the right things, for which I was grateful.
"After your diagnosis, did your neurologist provide any sort of “what to expect” information?" Um, no. I figured out that he was a very busy man. However, I also figured out where I could find out concerning relevant medical folks were posting things like clinic notes and images.
"Does your spouse “get it”?" Not really. She can be very attentive to my requests but I know where I stand with her; she's very concerned about her oldest sister, makes regular trips to St. Louis (125 miles each way) to help with housekeeping, cooking, etc. and is loaning the sister money to try and get her financial issues tamed. She has many more siblings that begat lots of cousins, nephews and nieces. I'm the only outsider when it comes to her family functions.
"Did you never hear back from one of your longest friendships after giving her the news?" The aforementioned three former colleagues are probably the longest friendships now.
Um, I have to eat lunch. I'll be making it myself, because my wife and I pretty much don't like the same food.
Again, I appreciate the chance to set out what things are like here.
Best, M.
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I have a friend, we have know each other since i was13 and she 14. We are now 68 and 69. When i told her, I think she said, "oh, ok" and has never mentioned it again. I find it odd. Does anyone understand that type of reation??
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I don’t think you understood my response. Sounded to me like the author of this post was looking for an escape from a very bad environment. I was trying to offer a suggestion. I’m pretty sure the air I’m breathing isn’t being wasted since I’ve been taking care of my wife 24/7 for the last 7 years. Have a good one jerk. Maybe learn to read.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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