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Jon8181

Dementia symptoms wife understands???

I'm just venting. I've had my share of neurological disorders now the past year I'm dealt with more new neurological symptoms that look like dementia. It's hard enough dealing 24/7 with what you have and the past year has been horrible. From short term memory loss to communication it's like someone went inside my head and erased half the alphabet and took words away from me. To try to explain what you go through to your wife and family, they just don't get it but the wife says she understands, understands what? How do you understand when I don't understand and then when mood swings kick in or depression or a bunch other stuff when all you want is I love you and together we get through this. They get mad at me so I'm done today I have had enough. I don't know what else to do. They don't go through this. If the wife spent just half the time researching as she does watching movies all day all night on her phone. So I'm done

9 Replies

  • Jon8181

    You need to see a neurologist. When you make the appt. make sure you tell them how poorly you have

    been feeling. Have a family member accompany you to your appointment. I think stress is a part of your

    problem. I wish you the very best.

  • Jon8181

    Hi jon i know you said you are just venting but i think deep down inside you want someone to listen to you and like you said understand what you are feeling, you do not want people dismissing you and telling you its ok when its not, i know exactly how you feel i do not have what you have but i have something very contacted to the same thing , i had a brain tumour and i also suffer severe migraines which left me with memory lost, and i can be in the middle of a conversation and forget what i am talking about, gets very frustrating , neurological disorders are one of the worse things you can have and dealing with it can make life exhausting, i have suffered migraines over 30yrs which has taken over my life, i lost my perfect job, my social life, relationships, thought i was going crazy, but it was my migraines that saved my life , it if was not getting treatment for that i would not have none i had a brain tumour, and now i am in remission, i have other issues, but i am dealing with them with counselling, it has taken a long time to get here , i was 14 when all this started , i am 54 now, and i refuse to give, so please do not give up too, i have had partners no good, i have a good one now, if you feel your wife does not listen found someone who will, a friend, a family member, a doctor, a professional, counselling , you might have depression that goes with this, i do and i am not ashamed to say it , i am getting help for it and you can too, this forum helped me too, we care , you can talk to us , if you do not want to openly talk you can private message me others do, take care jon do not give up, i write things down to remember on jotters paper all around the house drives my hubby mad, but do not care least i remember what i need to, take care x

    • jay babes

      Jay (& Carol & Caroline) please let me know all 3 of you got this reply because it takes a lot of effort to write. First I want to say thank you from my heart for taking the time to respond to my post. I've had multiple Ischemic Lacunar and Thrombosis Strokes, diagnosed with Complex Partial Seizure Disorders and Simple Partial Seizure Disorder, white brain matter disease, Cerebrovascular Disease, CSVD (cerebral small vessel disease), because I have CSVD I have 2 times more of a chance to get dementia and 3 times more likely to have more strokes, also since I have cerebrovascular disease and CSVD I'm at the top of the list of having a hemorrhagic stroke which is the worst stroke anyone can have. People who have a Hemorrhagic Stroke 91% die within the first thirty days and the overall fatality rate is around 71%. I also deal with dizziness, balance issues and falling down, and severe headaches 24/7 everyday they never go away some days are worse then other days. I have type 2 diabetes, 2 heart attacks, 12 stents in me, I have Coranary Artery disease, Peripheral Neuropathy in both feet and hands and sciatica nerve pain in my lower back. Last year the Neurologist told me I have short term memory loss due to the strokes I've had but never took time to explain what short term memory loss is. This is the same topic Neurologist from Loma Linda University Health. I told him I'd been dealing with memory loss issues way before I ever saw him and I also complained about my dizziness, balance, falling down and headaches but he has no answer. So a few weeks ago I pulled out the paperwork he gave us and he says about my Gait, I didn't know what a Gait was, He writes, Patient Mr Ciotti's Gait: Wide-Based Ataxia, again no clue so I Googled it. A person with a wide-based ataxia resembles a person who has Cerebellar disease. I Googled Cerebellar disease and looked at the symptoms, DIZZINESS, BALANCE ISSUES, FALLING DOWN & HEADACHES. I almost fell off my walker. This is what my wife should be doing, she's my caregiver because the State of California says I have a long-term extremely severe disability and found to be 100% disabled. The DMV revoked all my driving privileges indefinitely. So now I begin noticing new neurological symptoms within the past year, but that's when I noticed then. Here is my list:

      1) Short term memory loss.

      2) Communication.

      3) Mood Swings.

      4) Depression.

      5) Confusion.

      6) Judgement.

      7) Can't follow story lines in movies, tv shows, books.

      8) Roaming/wondering.

      9) Vision.

      10) Sleep disorders

      11) Apathy.

      Up until a few weeks ago I kept everything to myself because I knew the response I was going to receive and I just couldn't handle anything more. It was during the 4th of July week that we spent with our youngest son and his family. He told me before we left that every time him and I would talk I would constantly repeat myself. I knew then it was a matter of time. I felt like that kid at the carnival playing that game where he hits the clown head and another one pops up faster and faster. So I sat my wife and daughter in law down and told them everything. They already had their suspicions. My daughter in law said when we first moved in 3 years ago she noticed I would repeat words and sometimes I would pause like my brain was looking for the right words to say. My wife said for a long time she noticed what our youngest son told me so I met with our doctor last week, He gave me a standard memory test which I didn't do to good, He prescribed me medication and sent in a referral for me to see a Neurologist that specializes in dementia. The medication is to stop the progression of Alzheimer's disease and any other dementia disease. What gets me going half mad is i tell my wife she has 3 fractured ties, which she does. I have no idea what she's going through because I'm not her, her pain level is different than mine, so I say this, "I do know you have 3 fractured toes and you are in pain, I will do whatever has to be done to help you get through this, as long as it takes, I will iron your clothes, do the laundry etc so you are able to stay off your foot as the orthopedic surgeon has instructed you to do, if you need help going to the bathroom, taking a bath, I want you to know it's my turn to take care of you and I'm committed to do that until you are healed 100%. If you need anything please let me know because I love you and your health and we'll being is my first priority." Now this is a true story that's happening right now. That's all I want in return but I never get that. My seizures have been under control for three last year but I had around 12 in 2 weeks. A couple weeks ago I started roaming late at night outside the house and I got confused. I finally found my way back to the house but I knew all day something wasn't quite right. It's about 1:30 am, before my hand touched the bedroom door handle I started getting really dizzy almost like vertigo dizzy but it wasn't vertigo but I knew something now is definitely wrong, I open the bedroom door, the room begins to spin and I hit the floor like a sack of potatoes. I know I'm having a stroke but not like the ones I had before, I can't move, my left arm is tingling and I can't talk, I try but I can't and I now hear my wife and this is exactly what she says, "GET UP, I HAVE TO GET MY SLEEP!!!, I SAID GET UP. I'm my head in begging for her to call 911 because I know I'm having a stroke but I can't speak or move. Finally after about I don't know how long I'm crying but I'm able to crawl to my side of the bed, again I don't know how long it takes me but every so often I hear GET UP. I make it to my side of the bed and she goes back to sleep. She's mad because she tripped outside on a sprinkler head and that's why her footsteps broken so now she can't go to Wyoming to her nephews wedding and she takes it out on me. For some reason I felt I needed to look at the symptoms for hemorrhagic strokes, I had 6 out of 9 symptoms. My daughter in law was so mad the next morning she wanted to call 911. I looked at her and said, Stephanie I'm 64 years old, I've been with her for 39 years and I've never in my life seen her act this way but I would rather be dead then to ever in my life go through what I did last night. We have 4 sons, our youngest knows what she did and we are getting ready to leave to spend the weekend at his house. He said dad don't you say a word but when you guys get here I want some alone time with mom and I'm going to tell her I love her we all do but if she ever does that to you again us boys are giving her the money and a one way ticket to Wyoming and she can stay her [email protected]#$:$# ass up there with her lousy family. That also happened. So that's why I'm done so so done.

  • Jon8181

    I have. Gbs and been sick 16 times this year immune issues lung so on and I feel the same know one understands my sisters are pathetic sorry to say you think they come visit now I feel I I have cidp I’ve waited a year for nerology think my doctor screwed up again cause it’s been long time . I’m still shaky and always like roller coaster I’ve been depressed axiety so much my mom past away my sister daughter went to see them Alberta my mom that night feel and she 93 had issues eyes blindness due diabetes well long story short she went bath room late night and fell badly thing is she past away my sister daughter that go home my sister passes away from majore heart attack been stressful 3 years 4 months my feet still feeling like sand paper numbness and off and on getting tingling still in my feet and hands i can’t still go long distance . My sisters play on me cause been few arguments one my sisters drinks not just one they like to cause issues . My sister in Alberta this finally the end my moms ern came finally down with my older sister husband , daughter funeral tomorrow basicLly not even serves sad to say we’re just all going to put her with my dad , sister , brother . I know how you feel then are they like oh he’s sick in head more less and he’s just this that . I get it they do it to me they don’t understand with all going on my sister had put her rings that in ern I think it was beautiful thing cause she never wanted take her wedding band off or other rings that were bought from us . Well my other sister two them oh she drunk calls my sister about the rings got p****d thought she should have all them pathetic . Told my sister mom didn’t part with them there’s not enough to go around she goes well u can give all them to me she goes know there not got mad at her hung up . There all here so sad to say think gonna be crazy week end but I’m sick feel sad one day my sister said oh we’re gonna blame it on u since ur sick haha I said I don’t think so hung up on her . Just why family does this so pathetic. So I understand what you mean about them not understanding not pay attention to how we feel so on . If you need to talk private message me .hugs just ignore them they will see that your not taking it be stronger then them 

  • Jon8181

    Do they not have support for families in America from your doctors or other services and to explain your situation and how they can understand it and help all of the family to cope.

    • derek76

      Derek, yes we have so many different services, support groups, everything you can imagine from A to Z, but you have to be willing to go. The last time I was in the hospital was last year sometime and the night before I was released a social worker came to see me. We talked for quite a while and she asked me if there was anything that was the most important issue to me that I wanted to see happen, so I explained exactly what I had been facing from my wife and some family members and she said my situation is not uncommon and that most of her patients are going through what I've been going through. Just as she began to share some options with me my wife walked in. The social worker introduced herself to my wife and told her about the different programs, my wife seemed seriously interested and did call her once I got home but that's as far as it went. Nothing more about it was ever brought up again. I don't understand what's so difficult, if you love someone then to me you'd want to do whatever it took to make your husband/wife's life the best in any situation. A good example is my wife recently tripped and fractured 3 toes and I used this to explain to her what I want. I said all I know is the facts which are you have 3 fractured toes on your left foot, you are to stay off of it as much as possible, you are to gradually place some weight on your foot and you are in pain, that's it so my job is what do I know have to do to assist your doctors instructions? What ever that is I'm gladly willing to do, I don't understand or even have a clue of what you are going through, how this has affected you mentally, emotionally or physically, how your able to deal with this I don't know and I will not even try, because there's no way I ever could, so I will just continue to love you, support you in anyway I can, if there's anything you need from me like helping you to take a bath, washing your hair, going to the bathroom etc. No what I get is she understands and my question is how can you understand when I don't even understand? So as soon as I speak those words then she gets nasty, sarcastic you name it and what that does is now triggers my other symptoms and sometimes I get so anxious and upset I end up having a seizure. Let's see, I've been told I use my short term memory loss as an excuse and things of that nature. So here I am with a ton of previous neurological disorders and now I have a ton more and they are being used against me to be mocked, laughed at. So it makes me want t open up, that will never happen again. As I said in my post, I'M DONE.

    • Jon8181

      I can feel you same with me my sisters so sad . I do talk to my doctor and listens to me.  and I see social worker ever two weeks took a while . I say to my self you need to as well . Say this it’s not all me  we need to stand  and not take the abuse just because we’re ill . The big word what everrrr . I try live my day exercising to release stress .Also do not let her or them get to you cause then they think they won  I know it’s not right but like me don’t let her get the better of you . Your social worker is right it’s common she might feel she’s doing to much and she’s stressed maybe worried you might leave her in this life . Some don’t want to see the pain that the other feels runs and does things you least expect . You both of been together for years you need your sons to talk to her and your son wow are so like mine wonderful they always protect me they say mom it’s not worthy don’t let them get the better of you . Every one got things from my mom sad to say I didn’t and all I asked for is a sweater so I can feel her nope . Tomorrow is the funeral and I’ll go be proud and after that going home there going to restaurent but me I’m done just like you and stick to that because us sick people don’t need more stress wish all goes well hugs 🤗 

    • caroline70988

      Thank you Caroline for all your kind and supporting words. I love my wife very much and I've told her many times that I can't imagine being in her shoes seeing me the way I was compared to the way I am and I don't know what it's like, that's why I do as much for myself as I can. She will always say the hardest thing she has to do for me is to refill my weekly pill container, I take about 33 pills a day am and pm 7-days a week. I hardly ever eat so that's easy. Right now I'm doing most of the heavy lifting because she fractured 3 toes in her left foot, I iron her clothes for her to wear the following day, I clean and do all I can. I pretty much quit taking my anxiety pills because if I don't they knock me out. So I don't know what else to do???

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