And the Academy Award goes to... Pretender

Posted by judimahoney @judimahoney, 2 days ago

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.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

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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Profile picture for jatonlouise @jatonlouise

That's a tough one. And, of course, the longer he goes without realizing ( or realzing but using " denial " as a response) the less likely he might be to opening up to it. As for when I recognized and acknowledged it, it was after I got my diagnosis and read about what awaited me in PD -Landia. It took about 3 years to get the diagnosis, because my only symptom was getting more and more severely fatigued and that made the fundamental cause extremely elusive. It was only when the exasperated doctor who headed the 3rd team of doctors who had tried to get a diagnosis but had failed like the others and decided to abandon the standard practice of FIRST figuring out the cause of a malady and BEFORE treating it decided to do things backwards and use the TREATMENT of a malady itself as a diagnostic tool that Mr. PD was tricked into revealing himself. This doctor gave me ONE l-dopa pill and when he came back an hour later, it was as if I had been to a tent revival where a faith- healer had put his hand on my head,did his thing, and miraculously I could do things I hadn't been able to do for well over a year because I was bed- ridden. And BOOM! I could sit up, walk short distances, stand up. Now I can grab my buddy Mr. Rollator and walk a couple of blocks alone and do some shopping. I can't manage a bag of kitty litter but I can fill Mr. R's basket with smaller things and take some of the load off my husband. Once I had my diagnosis, I began reading a lot about PD and the associated cognitive issues and I started noticing some things I was experiencing. For example, one chore I thought I could take on was filling my pill boxes. Initially I had 8 pilling ' "episodes" a day and I thought I could take over filling the 8 the pillboxes. I had typed up a scedule that showed what I was supposed to take and when. When I started filling the pill boxes, though, I found myself making mistakes now and then so I had to re-check the pill boxes. I knew it was taking awhile but I had lots of time on my hands, so that wasn't a problem. Then my hysband told me that it took me 3 hours to fill them and told me he wanted to do it himself. I had NO idea it was taking that long. But I apparently get lost in time and can't really tell how long I've been doing something, so the time issue and the confusion issue convinced ne that I should let him take that duty back. I wasn't helping him; I was making it harder for him. I also noticed that the thing where you walk into a room for some purpose but by the time you get there, you've forgotten what you came there for, was happening more often. Our flat has 4 rooms: (2 bedrooms, 1 living/ dining room, a kitchen, 1.5 bathrooms, and a foyer.)It 's not that big. But I can still foget why I came into a room. (We moved to Berlin when we retired so we could be close to our son and his family. While I miss the house we left in the States, if I can loose myself in a 3-room flat, I can't imagine what it would be like to wander around in a 4-story house with 3.5 baths, 4 bedrooms, a family room, kitchen, and a dining room, and a living room trying to remember where I was going and why I needed to get there. I do know I would have gotten lots of exercise, though!) Another thing that recealed my cognitive decline was when I got lost on my way to a doctor's appt. The doctor's office is 2 blocks from our flat - go out our front door, cross our street, turn left, walk past 2 houses and turn right, walk 1 block, cross the street, and the doctor's office is 1/2 a block down on the right. I had to call my husband to cone get me. We have lived in this neighborhood for 11 years. I have passed the podiatrist's a zillion times but only recently became a patient there. Although I have always been " directionally impaired" and have no sense of direction, this experience was extreme, even for me. Things like this convinced me that I was having meaningful cognitive issues. Has your husband had any cognitive testing? If not, perhaps these tests might help him come to realize his memory is declining. They will show him drawings of aninals and he' ll have to name them. He'll be asked to name all the animals he can think of. He'll be given a series of words to remember and after chatting about something else for a few moments he'll be asked to recite the list of words. He'll be shown some drawings and asked to draw them. If he's not been tested, this might help give him ( and you) a sense of how his cognitive abilities have been affected. I would encourage you to stop him from driving sooner rather than later. I know that my brain works more slowly now, so it takes me longer to assess what I see and figure out what to do (e.g., if I see a ball roll into the street, it takes ne longer to process this and figure out the appropriate response ( e.g., there is likely a child associated with that ball and I need to slow down and be ready to stop if he comes running after it. And kids are short so I should be especially focus a little lower than I would normally.
Also, my physical responses take longer to cone into play, so when Mr Brain finally tells me to step on the brake, it takes Ms. Foot a tad longer to obey. These 'tads' could add up and be long enough to make a huge difference between stopping quickly enough or not. Also, if your husband has trouble remembering directions, he might get distracted looking for signs or other things to get his bearings and not keep his eyes on the road or he might stop suddenly or in the middle of an intersection and
cause an accident. Or drive too slowly or turn the wrong way onto a one way street. We've all seen these things happen and often they don't end well. Fortunately, we didn't bring a car with us when we moved to Berlin and have gotten along well without one because public transportation is decent here. So we have saved our son the difficulty of taking our car keys away from us. I have some idea o how dufficult that can be. When one of my cousins visited my step-mom, who after picking her up at the airport, told her that she needed her to tell her what color the traffic lights were, my cousins and I tried to get her to give up her car, but she refused. We even asked the state highway departnent to revoke her license but they refused. What saved her from hurting herself or others was a fall that resulted in a broken hip, and she subsequently moved into a long-term care facility. Although she wasn't involved in an accident herself, the Lord only knows whether ir not she did something that caused an accident behind her, while she went merrily on her way, totally oblivious to the carnage she had caused.

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@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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Profile picture for DanL @tunared

I guess I can call myself and accomplished actor. Most days/nights my wife doesn’t know who I am. She will get up in the middle of the night (I’m thinking bathroom break) but then I get a call from her asking where am I because there is a stranger in our bed. I get up and we talk for a few hours, (go over our wedding photos, etc) then I can persuade her to go back to bed with me.
She doesn’t remember anything in the morning and if I bring it up (which I know I shouldn’t) she tells me I’m making up stories and get’s mad at me (until she no longer knows me and thinks I’m her husband’s friend/relative/who ever). We no longer joke and laugh like we did for over 50 years. Now I’m just a stranger staying in her house.

On the plus side, she goes to a day care program that she loves and when I pick her up she is happy (but tired). She was going two days a week but starting in 2026 she will be going 3 days a week. I am so happy for her, going to the day care program but I also miss her.

This disease sucks

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@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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Profile picture for upgirl2013 @upgirl2013

@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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@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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Profile picture for krisingle1 @krisingle1

@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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@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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Profile picture for jatonlouise @jatonlouise

I can't imagine how difficult that must be. The disconnect between what is real , where there's a man who looks like your husband , but this man is a stranger you don't really know. And when you need the real man so much to get through this, reality taunts you by giving you someone that looks like the man you knew but that man is gone and isn't coming back and you didn't even really get to say a proper good-bye to him.. My husband and I are now 80 and have known each other since we were 16. We have been married for 58 years . I am seeing my cognitive abilities slipping through my hands, as can he, and there are things I cannot be trusted to do now, and it's frustrating for us both. We're slowlly adapting to it, but at some point the divergence between who I was and who I am will be huge and he's going to be in your shoes. Do you have anyone who can stay with him for a bit while you go do something for yourself (a massage or a facial, a movie with a friend, or just a lunch where you can be a little bit of your old self for a little while?) As for massages, I believe that Grief can take a strong hold on your body--you're grieving a loss of life as you knew it-- and if subtle hints that she has spent far too much time with you and should move along to the next person haven't worked, another way to show Grief the door is to let a masseuse do it. I have no scientific evidence of this but I just feel very strongly that it helps. If you're depressed (which would actually be a rational response to your reality), perhaps your doctor could give you something to take the edge off a bit. Are there any things you can think of that you used to enjoy that you can do a little bit of? If you enjoyed playing bridge, that may be far beyond his capabilities at the moment, but other simple card games like Fish, Battle, or Old Maid might be doable and bring back a little bit of fun. I know it's hard t o have the energy or interest in re-framing your life, and you truly do have your hands full. But if you could do some little things that might give you some relief and a smidge of joy, that could give you energy to do more things to make your life a tad easier. There won't be a silver bullet solution, but if you can't make a big chunk of changes, maybe you can do lots of little things and put them together into a lovely patchwork of pleasantness every now and then. You can't change your reality. The only thing you can change is how you deal with your realitly.

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@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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Profile picture for jatonlouise @jatonlouise

@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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@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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Profile picture for krisingle1 @krisingle1

@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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@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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Profile picture for krisingle1 @krisingle1

@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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@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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Profile picture for bclane @bclane

@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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@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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