And the Academy Award goes to... Pretender
I am now an accomplished actress, putting on the best show everyday. Pretending that I am fine with choices my husband makes when we watch T.V., acting like I am happy and smiling at my husband when he makes certain comments. Like that line from the song, Smile though your heart is breaking.
In order to keep my husband in a happy, relaxed mood I have to act like everything is okay. You've heard of, Fake it till you make it. Guess I'm hoping if I smile the warm feelings will follow.
I've lost myself; who am I now and gee, it was such a fast journey to get to this place where I'm a new person I hardly recognize sometimes.
Can I just say I miss Me, I miss Us.
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Pretending will only add to your cogntive deline. The brain gets scrambled with everything it knows is not true.
My husband died with Parkinsons. It was horrible taking care of him. I started using gel pens and adult coloring books to find some calm as he raged around me. I was 78 then, I'm 84 now. I'm happy.
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2 Reactions@jatonlouise my husband has scored 13/30
on the MOCHA test two years in a row. His neurologist thinks he had early onset AZ. My husband is on the waitlist to be seen at Mayo. I am hoping he will go through all the rigorous testing this spring. He has good moments and not so good ones all day long. He is unable to write a note and is not open to occupational therapy. I have hopes that once we have exhausted every test that he will accept a diagnosis.
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1 Reaction@tunared I am the youngest child currently living with my dad (88) and mom (86), who has dementia. I didn't move in to be a caregiver but more of a helper. That was 18 months ago and now I feel like I can't get away. My older siblings are hardly here although my dad seems to trust their opinions more than mine bc they are physicians. Additionally, my dad is very traditional so everything kind of goes in age order - so even though I am the one with the legal and finance CV my brother is executor of the will and my sister has access to his bank account.
Meanwhile, can I mention again that I am the one who is here 24/7? My sister is maybe here for 8 hours a month and my brother 4 but they don't listen to me, they tell I'm doing everything wrong and then turn right around and tell me I'm not doing enough. The one thing we all seem to agree on is that I'm a VERY good cook and housekeeper but alas when they're here hey want to take charge of both and if I explain where a pot is or something I'm told that I'm being controlling and that it's mom and dad's kitchen, not mine. Mom doesn't even know she's at home. Dad is an exhausted skeleton. We have some aides but not enough. I am glad for their love story but my dad seems to need for my mom to need him so he does things that are completely counterintuitive.
For the first time in my 53 years I recently thought of suicide because I am so unhappy and I keep getting told how great ? I have it. I have even been accused of taking advantage of my parents bc I use their Amex (with permission) when I shop for the house. My therapist says I have a toxic family. Oh, did I mention I'm adopted and the only adopted child? I doubt it's relevant but I never even thought about it until now when I am be so poorly treated. Please forgive me but I can wait for my folks to die so I don't have to deal with these people anymore.
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4 Reactions@upgirl2013 perhaps when they btief him on the results you could ask whether this could adversely affect his ability to drive and if so, how. I'm assuming you'll be in the room when they brief him. My husband has been present whilecI've taken these trst so he''s seen my diminished cognitive abilities demonstrated, which I think has been helpful especially since there was a time when his own approach to some problems used to ignore them. This was decades ago and he's learned that denial isn,'t to make something go away. His mother died when he was 6 and the other adults in his family gave him the "ignore it and it will go away" approach to his grief whenever he would be sad and cry about it.
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1 Reaction@krisingle1
It would help if you could add exercise to your routine. Heavy exercise increases serotonin in the brain and will make you feel better. When the aids are there go out and run or to a gym.
You are in a very dark place now and might consider calling your therapist.
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2 Reactions@jatonlouise What a gift you gave @judimahoney sharing your perspective from not just the caregiver but the person who has the cognitive abilities slowing fading away. I was amazed this morning, the start of a new year, reading that "patchwork of pleasantness" you talk about with your caring suggestions on how to overcome the grief and sadness she is feeling - I'm sure most caregivers, like me are feeling. I was devastated when my husband got his MCI diagnosis, his abilities are slowly fading away too, but I have such a steadfast resolve, to try to capture every moment I can with him during the good and not so good days. For me, I'm finding my grief is more fear. Fear of the unknown, but I have courage and clarity, in God's light as I try to work through this with my husband, my friend, my buddy, of 42 years. Thank you for sharing, and in doing so, giving me hope in your clarity of message to every caregiver having to deal with the reality you talk about. Your poignant message is so meaningful as we start the new year. Thank you.
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1 Reaction@jatonlouise our carpet is so high from my husband sweeping his emotions/difficulties under it. I am going to ask the driving question at our Mayo appointment(s). I am still waiting for an appointment date.
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1 Reaction@krisingle1 You need to find a good lawyer, discuss your situation and plan a vacation (2-3 weeks) for yourself. Suggest one of them take over your role while you are on vacation. I would also suggest not using the Amex card again because your "loving" sister & brother might come after you for the purchases. I would tell your "loving" sister & brother to start ordering everything for the house. Send them a daily/weekly list of things needed at the house. there are many services available for food delivery (i.e. meals on wheels) and other services. look for a respite place for your father while you are away. take care of yourself because you know your "loving" brother & sister will not take care of you.
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2 Reactions@krisingle1
OMG, I feel such sympathy for you! Your siblings make me glad my brother and I were both only children (he is 19 years younger than me, so we were raised as only children). I suppose your siblings are also adjusting to what's happening and trying to cover their own guilt for not doing more (I know I'm being generous to them here, but it is possible). Instead of facing that, they take it out on you.
Someone mentioned you might not want to use the AMEX card anymore because they might come after you for the charges. I don't think that can happen, although you certainly don't want to use it for buying anything for yourself (other than T-paper or other household items that you also use, of course). My brother has never been good with money, and when my mother (who did not have dementia but was in a wheelchair) was alive, she let him use one of her credit cards and he failed to pay it. She couldn't afford to, and the bank that issued it even tried to guilt trip me into paying it. I don't do guilt trips and told them the situation and that if they thought they could take an elderly woman in a wheelchair to court to get the money, go for it. Of course, they didn't because that would never have gone anywhere and it would have cost them more to try.
Is it possible for you to move out and simply help as you can? You don't say whether you were working when you moved in, so I hope you didn't give up a career to do this. When your sister or brother shows up for their few hours a month, leave and go do something for yourself. Let them deal with what you deal with all the time and don't deal with them. You're no spring chicken yourself, and you need to take care of yourself.
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1 Reaction@bclane Thank you for your kind words. I only use the Amex for household products, gas and with my Dad's permission. That's why it's crazy they say anything about it. Am I supposed to be supporting my parents? It's appalling.
I did give up a career for this although my company is now closed our offices in America which is part of why I left. I knew it was coming and thought just leaving after winter break was a good solution but they lasted longer than I thought so it was a mistake on my part. I am looking for work to do exactly as you suggest but the market isn't great and with my own health and depression issues sometimes it's hard to do. I will surely make more of an effort this year.
As an aside, when my brother was here before Xmas for a weekend he came in and woke me up bc my Dad had been dealing with my mom for a couple of hours after they woke up. 1. My dad made the choice to have no help on Sundays. 2. I thought my brother was there to give my dad and ME a break. Guess not. He also had the nerve when he woke me up to accuse me of sleeping late because of drink! I am sober and haven't had alcohol for more than a year whilst I've been here. He's an ass.
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