Dementia

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    Community Voices

    Mommy Dearest

    My Mother was not interested in being a Mom I have no idea why she gave birth to 5 children. She was an odd duck growing up you never knew which mom she would be in the morning. Mother could be physically an mentally abusive or She could be making your prom dress. Mom has dementia now and She is still scary to me ....an exaggeration of who She already was. I Love her because She is my Mother but I'm angry and have been for a long time because I didn't get the Mom that I needed and deserved....." Donna Reed"! I just wish that She would pass so that she could finally be at peace.I could then hopefully stop thinking about all the abuse and try to remember some of the good things that She I think grudgingly did for me because She knew what I thought about her. I just wanted normal.

    Explaining Parkinson's Disease to My Children

    How do you tell your kids about a disease like Parkinson’s? “Well, darling, it’s like this: Mummy’s going to get progressively slower at moving, talking, thinking. Falling might be an issue and periodic bouts of choking, falling, and hallucinations. All whilst she’s dancing a jig to no music.” Yeah. My kids were 11 and 15 when I was diagnosed. To a certain extent, it was easier as they knew I had been experiencing some weirdness.” The eldest responded in her eminently practical way and started researching cures…a form of denial? Or perhaps acceptance. It’s hard to say, although there was some knock-on as her studies dipped and she struggled with her relationships for a time. The younger one had a tougher time and still does. It was initially made extra challenging by a teacher telling her I was going to get dementia and lose my memories. My daughter came home distraught, aggravated by my apocalyptic anger. But strangely, this turned out to be positive. It was an opportunity to talk about symptoms, outlook, and the future. The biggest lesson was never to assume anything! Children aren’t in possession of the same knowledge bank as we are: ensure they know it’s not contagious or that you aren’t going to drop dead suddenly. Mine wanted to how I got Parkinson’s. I spent a lot of time reassuring them that it was all manageable and they were not to worry. Mummy would be fine and cope. The truth is I carry gut-ripping guilt that I could be burdening my children with this. This diagnosis is not something they can come along the ride for; no one can. Nor should they. I don’t want them to become my carers. I want to retch when I see the flash of fear as I struggle downstairs, the just-in-case hand at my elbow. The anxious shouts of, “Are you OK?” if they hear the smallest crash from the kitchen. I know they resist asking me to do certain things so as not to worry/tire/stress me. I hate it. I feel like I’ve stolen part of their childhood from them. When I became a mother, I had no idea how hard and at times soul destroying it can be catering to tiny militant egomaniacs. How wearing the repetition of day-to-day parenting truly is. But it is also the best thing I have and will ever do. Those girls and I have been through everything together. We’ve navigated me becoming a single parent and worked as a team, bringing each other up and becoming a force of nature, together. The youngest is 14 and in the throes of monster hormones, biting the hand that feeds and then sobbing uncontrollably that she loves mummy best of all. She has had a period of denying Parkinson’s. Raging once that I don’t look like I have Parkinson’s and how do doctors know I have it? Turns out that she had been Googling and was presented with the usual old, bent man depiction of someone with PD. We need some new imagery. The mistrust of diagnosis is again something she had gleaned from the lack of definitive testing. I’d love to tell her it was just nonsense and I’m fine, just slightly wacky. But it was a wake-up call I had been hiding some of the symptoms and now I had to be honest with her and myself. The bravery and honesty my children show about this disease is the best support and love I could receive. They trust me to cope, or to be honest when I’m not and I trust them to do the same. Perhaps we are in this together after all.

    Community Voices

    Generations of Mental Health does my family even stand a chance?

    When I was growing up I adored and loved my( very normal) Dad so much. When he passed away 30+ years ago I was devastated. It left me with my Brother and my Mother. I was married, raising a family and working. My Mother lived in Florida by this time. I was and am in Illinois.
    My Brother is in West Virginia.
    My mother and I were astranged on and off since I was about 20.
    I guess my Brother and I knew she was mentally Ill in some form or another. I bet my Dad did too, but he never talked about it.
    So “Fast Forward” My Mother is in Georgia in an assisted living facility near my Son and his wife. (Why she is there is a whole other story) She is 97.
    Her mother lived till 103 and her Mother lived to be in her 100’s. So I doubt she is going anywhere soon.😂
    My Son and her lawyer figured out how to “trick” her and got her evaluated in a mental facility. Sure enough- she has Schizophrenia, early Alzheimer’s, dementia and a few other things that I can not remember. She has been medicated so that a facility would take her. The first one she was in asked that she be removed. They could not handle her outbursts, accusations and trying to escape.
    The one she is in now is very nice and they take good care of her.
    As long as she takes her meds.
    So, I feel like you have my life story!
    Anyway, my Mother’s Father had issues from what I was told.
    My Mother was an only child. I believe and suspect this may be where it began.
    I fight constantly to avoid being the way she is. More successfully with each year. I am 76. My Brotherhas issues and has not spoken to my mother in so many years I lost count. He is angry and we speak but I must be very careful. I will tell you there is a common thing he likes to say over and over “ If we had all listened to him and had her tested, this would not have happened”
    My biggest concern is one of my daughters has begun to show traits that I believe resemble my Mother’s and me for that matter. I have not told her this because I know she will yell and scream and probably not talk to me if she knows my Suspicions.
    What do I do? I don’t see these traits in anyone else.( I have 6 kids) But I see the same pattern as myself at her age. She is following the same course as I did with my Mother.
    Finally, I have been told and read that this illness may not appear until you are in your 20’s……that also matches my history, my Mother and my daughters.
    What do I do? Just let this keep going from generation to generation? Is there anything that can be done?
    Thanks for reading my “rant”. Much appreciated.

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    B B @bugg
    contributor

    Living Your Best Life With an Alzheimer's Disease Diagnosis

    My mom and grandma had Alzheimer’s disease. I knew it was a possibility that I could have Alzheimer’s disease too — but then again, maybe I wouldn’t. I started having memory loss symptoms in my 40s, but I chalked them up to the small strokes I had previously had. My other symptoms from the strokes improved, so there was no reason to suspect my memory wouldn’t improve too. In my mid-50s, though, my memory loss continued getting more severe. I didn’t have time to worry about myself, though, because I was busy taking care of my mom. A few years after Mom died, I was buying a new refrigerator when I went to fill out a check — but couldn’t figure out how to. I felt so embarrassed as the salesman watched me struggle. He helped me by telling me what to write, but I still had a hard time. I told him to fill it out, and I would initial it to give my approval. That’s when I decided it was time to see a doctor about my memory. A few weeks after a long test, I received my diagnosis: Alzheimer’s disease. I originally told my husband not to go with me to the doctor’s appointment because I thought my challenges would just be because of something else. I went calmly to the doctor, but she told me my symptoms were more than likely Alzheimer’s disease. As I sat stunned, she proceeded to tell me to get my affairs in order. I was only 60 years old. It has been four years since then, and I still live my best life. My “best” is a little different than it was four years ago, but I’m still enjoying life. My husband helps me with things like paying bills, taking medications, cooking, and watching the grandchildren. Yes, I may have declined in the last few years, but I have also picked up new activities and new friends even though I’ve lost friends too. I go to lunch with friends, to the gym, play pickleball, go to drum circles with my djembe drum, mow our five acres of land, take care of the house, and help get the grandchildren up, dressed, fed, and out the door every morning. My memory doctor’s office has a strong support team and activities too. I participate in an art class, a music program, and a support group. I also wear a medicine patch that helps bring clarity to my life. My Alzheimer’s disease diagnosis may have been devastating, but it’s not the end. To help support others with a dementia diagnosis, I have started a Mighty group called Living With Alzheimer’s. If you’re living with dementia, remember that we can all support one another!

    Community Voices

    Just Another Day

    When I tell everyone that my birthday is "Just Another Day", and that is not important to me to celebrate.... Every year I lie.  It's a lie I've said for so many years I think I've finally convinced myself it doesn't matter so it hurts less.

    I lie because the reality of very few people remembering it or choosing to celebrate it with me are few.  The reality is after 47 years of being on this earth that my Father and Brother have no idea when it is.  I lie because my narcissistic and abusive mother would acknowledge it only because she was obligated to, not that she wanted to.   I lie because when the dementia took her mind and she no longer remembered it was actually a blessing.

    I lie because the relationship I desperately miss with my brother will never be again until he gets the help he needs for his addictions and mental health.  I lie I'm not disappointed in the police and justice system for allowing him to walk way from attempted murder charges against his wife.  I lie that the calls from Child Protective services about his children aren't triggering.  I lie that the invasive questions about our early childhood trauma aren't scarring in ripping open old wounds to bleed again.  I lie that I'm not ashamed that they've had to enlist the help of the head of domestic abuse services in our area and that I've had to admit defeat and walk away from the situation.

    I lie because my sister, who would always remember and never fail to plan something has been gone for 20 years.  Since her death the ties to her widower have disintegrated despite my best efforts.

    I lie because it's easier than accepting that I mean very little to few to remember.  I lie to my daughter when I tell her it's okay that my phone doesn't ring and I didn't get birthday cards in the mail.  When I make my own cake and celebrate with just the two of us.

    I lie because I'm the one that never forgets birthdays of the people I love.   You'd think after 20 years of consistency it would be easier to accept but it seems to hurt more every year.

    I lie because the one person who I fell in love with won't be with me.  I lied to myself despite all of the red flags and that he was who he said he was and in a place to be with someone through hard times.  I lie to myself that somewhere there is some worth in me.  I lie that I'll have value to someone enough to be loved one day.  It's easier than the reality of dying alone because of my lies to myself.  I continue to lie by living by the old saying that if you love something you have set it free   I lie that I still don't cry everyday after months hoping he'll come back and be mine   The truth that he never loved me is the grief that hurts hard

    I lie that I don't sit and wait all day hoping desperately that someone remembers and thinks of me.  I lie that I'm not disappointed that the outcome is what I expected and that I'm not crying silent tears that night.  It's just my allergies or something in my eye.

    It's just another day.

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    Community Voices

    Brain fog?

    Hi there. I have MCTD, which has facets of Fibromyalgia. I definitely feel the fibro! While I’ve felt spacey before I don’t think I’ve ever had this feeling of absolutely not being able to concentrate. I leave the sprinkler on, constantly lose things, firget what I’m doing in the middle of things. The fatigue is overwhelming. Absolutely overwhelming. Is this what’s called fibro fog? I’m actually worried I have dementia ~! I’m 60 yes old and have a lot of family responsibility with my elderly mom . My family does help out but I feel like I’m just wandering around trying to keep myself together. I hope this isn’t to whiny of a post. I just can’t even summon the energy to see rheumatologist…

    10 people are talking about this
    Monika Sudakov

    8 Things to Do While Self-Isolating With COVID

    I’m on day seven of isolation due to COVID and I must admit that I’m starting to get some serious. cabin fever. I managed to avoid getting COVID for two and a half years. I got my vaccinations and boosters, wore my mask, and rarely went out. A week and a half ago I went to a trivia night thinking infection rates are low and I should be safe. Well, that was a mistake. Myself, my friend, and her husband all came away from that event with COVID. While I’m lucky that my symptoms haven’t been awful (thank you, Pfizer), my mental health has taken a beating, partly because of the isolation, partly because of the hyper-vigilance of not wanting my husband to get sick, and very likely due to COVID itself, which has been linked to an increase in mental health-related symptoms, particularly in individuals who already struggle with mental illness. Fortunately, I have managed to keep myself largely occupied, engaging in various activities depending on how I was feeling and how much brain fog I was experiencing. In no particular order, here are my top eight favorite activities that have helped me pass the minutes, hours, and days of being alone. 1. Watch television and movies. Yes, we all have gotten really good at bingeing Netflix or other streaming services over the past couple of years. But more specifically, I have been re-watching the same shows and movies I’ve seen many, many times. There is actual sound psychology behind this. Those who tend to be anxious crave predictability, order, and repetition. It helps us to feel safe when we are otherwise feeling emotionally dysregulated. For me, it’s a form of escapism and it helps to tap into the safe place that I have established in therapy. Aside from starting “Schitt’s Creek” all over again, I’ve watched the unofficial Céline Dion biopic “Aline” five times. It’s like a two-hour-long hug for my nervous system and I’m not ashamed to admit it. 2. Play games. While I’m not a video gamer, I do enjoy playing a handful of games on my phone. They don’t require much thought and they pass the time. I know that for many, video games can provide a similar kind of escapism to television and movies. There is also some science that suggests playing video games, particularly ones where you are interacting with other people online, can help build a sense of emotional connection and resilience, which of course is extremely important while in isolation. And role-playing games in particular can help process traumatic memories, enabling us to take control of the outcome and in essence empowering us where we once felt disempowered. The key is not to overdo it. Setting time limits on play can help keep that in check. 3. Channel your inner student. I’m one of those people who, if given the opportunity, would gladly go to school for the rest of my life if they’d pay me to do it. I love learning new things. It’s probably why I tend to stick to reading non-fiction and watching a lot of documentaries. There are a ton of great apps that you can use to learn something new. My favorites include Duolingo (I managed to break into the top tier of French language learners this week), Blinkist (which is like Cliff Notes for educational books and podcasts), and Khan Academy (which offers thousands of interactive media on practically any subject you can imagine). The bonus: learning something new every day is good for your mental health. It bolsters your confidence by empowering you and giving you a sense of accomplishment and mastery. And depending upon what you are studying, some activities can actually help your brain become more resilient against the onset of dementia and Alzheimer’s disease. 4. and 5. Assemble a jigsaw puzzle while listening to music or a podcast. This one is a twofer. I’m on my second 1,000-piece jigsaw puzzle in a week. Aside from passing the time, I find it challenging and stimulating. And talk about a good hit of dopamine when you finally complete it! It also is something I can do while listening to music or a podcast. I have been catching up on some of my favorite podcasts including “A Little Bit Culty” and “Ask Kati Anything,” both of which have longer episodes that I usually don’t have time to commit to. 6. So much reading to catch up on! I have a confession — I’m a book hoarder. At any given time, I have 10 books sitting on my end table and on my phone. I often read three or four at a time and it takes me forever to finish them because my time is limited and my attention span is stretched too thin. I’ve finished three books I had in various stages of completion already and just started a new one called “Emotional Inheritance” by Galit Atlas, Ph.D. No interruptions, quiet and endless hours of free time make isolation the perfect opportunity to catch up on all of those stockpiled books. And, just like with re-watching familiar shows and movies, re-reading old favorite books can be just as good for your mental health. 7. Get crafty! I admit that I’m not much of a craft person, but I do enjoy drawing and coloring. I spent some time on my “Schitt’s Creek” coloring book while watching the show and worked on a calligraphy project. If you love to knit, sew, crochet, bedazzle, paint, or whatever cool crafty thing that I’m super untalented at… this is the time to channel your inner child and play! And thanks to Amazon Prime, you can even have a craft kit shipped to you overnight and discover a whole new passion you never knew you needed in your life. The possibilities are literally endless! 8. Cozy up with your furbaby. While I was a tiny bit concerned about getting my elderly cat sick with my COVID germs, I cannot imagine having endured this past week plus without him. I have been careful not to get too close to his face, but he has been curled up next to me keeping me calm every night and it’s been most welcome. There’s nothing quite like the warmth of a purring feline to soothe your soul.  And knowing I needed to keep him fed, watered, and his litter box clean gave me at least some kind of sense of purpose to make my days feel less like I wasn’t accomplishing anything useful, something that my perfectionist overachieving people-pleaser self struggles with at the best of times. COVID sucks. I don’t recommend it. But if you do happen to catch it and find yourself holed up for a while, I hope that this list of things to do will help you pass the time splendidly. And don’t forget to get plenty of rest, take your meds, drink lots of fluid, wash your hands, and nourish your body. Get well soon!

    Community Voices

    I’m not giving up

    <p>I’m not giving up</p>
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    Community Voices
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    Community Voices