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Thread: Need help/support

  1. #1
    Distinguished Community Member puddykat's Avatar
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    Default Need help/support

    It's been a long time since I've been here....I'm in end stages of Vascular Dementia, not a pretty sight; I think of doing away with myself so many times but my morals are very strong, I pray they stay that way as don't know how much longer I can deal with this.

    Read signature please, will tell you a little of what VaD does; that's just a snippet of how it's killing me. Seizures/strokes gotten much worse. Having been here before most of you know the difference between ALZ and my kind of Dementia....ALZ patients don't know what's going on....; I know everything, feel everything, my memory has hit a new low, asking my SO what my daughter's name is, couple minutes later asking again. My repeatedly asking same ? riles him up, frustrates him, especially if he's in bad mood to begin with.....and that day I don't even recall asking the question. Large crowd of people which always throws me off; try to avoid lots of people. Have panic attacks every time, paranoia Then there's the pain endured from all other problems.

    A couple months ago in one week, in two consecutive days I had to bad seizures, two very bad strokes. Not sure they had anything to do what comes next in my writing. Do know wish the strokes had killed me.

    Started hearing SO talking to woman on his cell in his closed bedroom door (always closed so it stays colder); recognized her immediately. Now I knew why he stopped at a particular bar on Tues as she bartended there plus she is going for nursing degree (she flunked exams 3 times), works at local nursing home.

    Every night at all times, 11p.m., 1a.m., 3 a.m. etc. they'd talk. After a stroke on a Fri. I slept all day Saturday, couldn't make it out of bed on Sunday either.....I heard her in the house Saturday, stayed the night, left Sunday; happened twice. He picks her up so there's no extra car in driveway/takes her home. My body/mind felt to heavy/queer I couldn't get out of bed, to confront them. Told SO what I heard, he denied all of it.....said i knew who it was but wouldn't give him her name which he wanted badly.

    After that think he bought one of those in the ear pieces so I couldn't hear her talking anymore, he never said much; only 'yes, no, what?' etc. Hard for him to breathe.

    He kept denying everything. Had a policeman here, told him what was going on, what were my rights......once I said I had dementia, his demeanor changed just a little. My daughter was here too. At least I had things on the record with the police as this house is full of guns kept in garage mostly but pistols in drawers in kitchens for possums/raccoons. He did give me options, my file #. SO has a MENSA brain, Jykll/Hyde personality, verbally abusive even in front of my daughters/their husbands at family get togethers

    This has been going on for, what, maybe 3 months now?? a little less. I've seen my doctor, I wrote out a 2 1/2 page 'note'......he sat, read every word as SO's a patient of his too, sounded like he didn't care for him much either

    He believed me, didn't think I was hallucinating.....regardless of the fact I've never seen this woman, leaving my door wide open, leads down hall, so I've a great view of anyone coming out of anywhere which is his bedroom; across from his is bathroom, down further is little hall to front door and laundry room.

    I take no meds for dementia except for baby aspirin. I've lost about 8lbs during all this so doc cut my BP meds in 1/2; I was about 85, now 77; he cut back another one too both because of body weight. I'm drinking Ensure every day when I take my meds, vities. Taking OTC Melatonin to help me sleep; first night was out in a flash, slept great for first time in 3 days of no sleep. After that haven't been sleeping so great. Have appt with doc on 20th so writing him another note of what's been going on.

    Yesterday I was still in bed with door wide open; SO came home from work, problem with bowels; thought he stayed home, in bedroom, talking to woman as I heard them. I got up at 10 a.m., used bathroom, went to garage to toss some garbage..........................low/behold SO's car was gone!!!!!!!!!!!! Tells me I've been hallucinating this entire time, called auditory hallucinations.

    It's good/bad news......think about it so I don't have to explain; I'm so sore/tired....you'll understand quickly what a mess it puts me in, puts my brain in, body. Caught tween heaven/hell?

    This a.m., heard Tom to two women in kitchen just before leaving for work. Talking about cleaning house?
    We've talked about someone coming in to help me so figured he'd called someone. Back to sleep, woke to hear women talking in basement, cleaning. Got up, noone around.....another big H.

    Can't deal with this anymore; lots of meds for H but also have some nasty side effects; another topic for the doc. Like I said hoping my moral compass holds the test of time. SO had promised me I'd die at home.....anytime Lord, anytime now.......but when you're ready, for I have no say in this :(

    Haven't posted much anywhere, here and there on occasion. I pray you are all doing well as I do think of you often, have missed posting. I have to write posts ahead of time now pretty much. Almost certain SO looks for where I post, reads them........really don't care anymore. Too tired to care.

    Leave you with one thought - I love all of you dearly, think of you often even tho I don't post. Hopefully my doctor can help me, get these nasty H's to go away - but that's the way of my particular dementia, nasty D disease

    Love to you all and gentle hugs too, kat
    TMJ/shoulder/parotid tumor surgery, Scoliosis, Lumbar fusion for Spondylolithesis; now in entire spine. Herniated cervical disc, no surgery, high risk/Vascular Dementia (VaD), Breast Cancer survivor 12 yrs, Fibromyalgia, Osteoarthritis. Rapid transit small bowel/no weight gain, IBS, 'cusp'/Crohns; Diviculosis; myoclonic dystonia. VaD, my 8th yr, causes tia's, seizures, strokes, Parkinson's, Lewy Body Dementia

  2. #2
    Distinguished Community Member tic chick's Avatar
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    kat ,

    do you think you can call the hospice department at the hospital you usually go to? tell them your doctor's name and they can call him and ask the prognosis of your condition. if the doctor thinks you're in the final stages of vascular dementia, you certainly are eligible for hospice care in your own home. tell your daughter or someone else to do this for you if you can't ! you will get help to finish your life with dignity. they will be able to set up care for you at your home and get you resources for anything else you need.

    please call, kat. it breaks my heart that you have to die like this...you have been an inspiration to all of us here and especially to me while you have dealt with your journey. i care for you so much.

    ((((hugs)))),
    jeannie
    Last edited by tic chick; 03-15-2012 at 07:55 AM.
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

  3. #3
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    Kat,we miss you & love you too. cannot imagine what you are going through. maybe it's time to let the doc give you meds for these hallucinations? hope you do get someone to clean house.

    you need to get out,but perhaps not where there are crowds?

    ((((gentle hugs)))) Pati

  4. #4
    Distinguished Community Member Ging's Avatar
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    Kat , you have given me so much insight into this VDementia, I do hope the doctor can help you when you go on the 20th. You have so many people here that love you and admire your courage. I saw your post and wanted to let you know My husband started his theraphy today for his Major clinical depression, He is starting at the begining of his dementia and You have given me so much information. Bless you dear Kat and thank you so much...hope the doctor can give you something to help with sleep and the Hallucinations. (((hugs))) ging

  5. #5
    Distinguished Community Member houghchrst's Avatar
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    Oh Kat I don't know what to say except I love you too and thank you for being such a good friend to me. I am sorry this is happening. Stay strong and come be with us as much as you can. I am with you. (((((((((KAT))))))))

    I'll be over to kick yer so called SO in the seat of his pants while giving him a healthy dose of the back side of my
    mind and I hope God sees fit to do the same.

  6. #6
    Distinguished Community Member Jo6's Avatar
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    Default Kat Dear One

    Oh how I wish we all could come by and stay with you and hold you close and you would see how much we all love you.
    I thank you from the bottom of my heart for explaining your type disease and I am going to see what can be done to gather all your post on VADementia and keep it someplace where those that need it will always be able to go and read what you have written.

    Try to do what Jeannie suggested and get some help around the house. You aren't able to be cleaning and such and especially for SO! I know they will have some help right away. If you can't call get your daughter to call.

    Please take care dear, get all the rest you can. I thank you always for the picture you sent me some time ago. Of course I still have it.

    I love you so very much, Jo
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

  7. #7
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    kat
    I hope you get to stay with us as you are missed. i am trying and actually am doing it now adventuring into other forums more than i ever have. . you are a treasure and i hope the doctors can help you more than they have in past. i am sorta greatful that we don't have as large a number as some other places cause geeze I'd never keep up with all.

    I am thankful for remembering those that do post even seldom. smaller places have kinda a closer personality to them in my mind. and it is so easy to get tired of looking at so many posts and just quit therefore maybe missing someone that you care about that posted in another forum you missed. take care kat and know you are well thought of and loved my many here.

  8. #8
    Distinguished Community Member Beader's Avatar
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    Dear Kat,

    I'm so so sorry to hear about your current situation that I'm typing this thru the tears.

    You've really touched my heart. I can't imagine how hard this must be for you. I hope you can at least get on BT now and then to read, to know how much we care about you no matter what. And I also hope that what Jeannie says will be easily available -- the hospice people have been just wonderful angels when my family has needed them, and both times we wished we'd gotten in touch with them sooner.

    I wish you fuzzy kitty cats in your dreams and more to visit and cuddle with in real life.
    Sher
    My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

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    Distinguished Community Member JanM's Avatar
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    Oh Kat I am so sorry of your place in life's journey. I pray your road to 'perfect health' will bring you peace and joy. We all know you fought the good fight and the jewels on your crown will be many. Love ya, gal
    I'm just where God wants me to be, not one step ahead nor one step behind........

  10. #10
    Distinguished Community Member puddykat's Avatar
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    I cannot tell you how much your words of love/support have touched my heart. I needed to hear them so badly. ......I'm not dead yet so hope can come back, write, no need for replies; just place to write out feelings, happenings.

    Yesterday was very bad day; when first dxed, out to eat, had seizure, my brain was talking to me in my own voice very calmly saying "put down the burger, sit back in your chair, just relax as this isn't going to hurt". Did what 'it' said...my first seizure, sat staring, couldn't move, talk for don't know how long, didn't blink, could hear a little as waitress/SO didn't know what to do except leave me alone hoping I'd come out of it. SO boxed food, still sorta out of it, rushed me to car; later said rushed me in case something more happened better to be home.

    I've had other seizures but not talking kind........until yesterday. Working on puter, suddenly very depressed, felt different in my head.....there was my voice gently but strongly telling me to kill myself right there and then, and I had the strongest urge to do it which you know goes against everything I believe in.
    When you're nuts/crazy does it count as a suicide/person going to hell? Put some thought into that one esp. how the idea came about, and yes I included this in my notes for doc appt tomorrow. 2 pages notes should be about right which he reads each time....these are a bit more unstable notes as I reread them, but I thank God doc takes time. He didn't think I was hallucinating last time....these notes may change his mind.

    I need meds for this crap, lousy side affects to most of them which won't help my body pain but seems to be no alternative. Meds are also for Schizophrenia for which I opened a 2nd page on puter for spelling, while I'm at it, see what people are talking about in posts when done here. I'm probably have that too? which would go along with Dementia.

    So few, if any, to post re/Vasc. Dementia. If I found any, no one was posting or they were very old, or all from caregivers. I write off line so things make pretty much sense then post. But I couldn't have better friends then I do right here and a couple other spots I post. Thank you again for all your loving posts; I needed to hear 'love' from my friends as I don't think there's love in this house; thank God for my daughters altho my youngest is very in touch with me/disease, my oldest doesn't keep in touch that much; more like my Dad was, if I don't see it, it doesn't exist.

    Love to you and yours......like I said you don't have to reply, just let me write while I can :)
    TMJ/shoulder/parotid tumor surgery, Scoliosis, Lumbar fusion for Spondylolithesis; now in entire spine. Herniated cervical disc, no surgery, high risk/Vascular Dementia (VaD), Breast Cancer survivor 12 yrs, Fibromyalgia, Osteoarthritis. Rapid transit small bowel/no weight gain, IBS, 'cusp'/Crohns; Diviculosis; myoclonic dystonia. VaD, my 8th yr, causes tia's, seizures, strokes, Parkinson's, Lewy Body Dementia

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