New Member: My husband has rapid onset dementia

Discussion in 'I have a partner with dementia' started by yayagoddess, May 25, 2017.

  1. yayagoddess

    yayagoddess Registered User

    May 25, 2017
    Cleveland, Ohio, USA
    Hello. My husband is 62. On January 23rd of this year, he had a massive dizzy spell at work, was very confused, so they called an ambulance and too him to a nearby hospital emergency room. I met the ambulance there, and by then he was pretty much all right.

    They ran several tests, said it was not a stroke, and most likely a blood pressure spike and told him to follow up with his own doctor. We were able to secure an appointment for February the 15th. By that time, he could not longer complete sentences, struggled to find words, could not do simple mental math, use simple machines, like banking ATMs, calculators, computers, etc.

    His doctor put him in the hospital for 2 days to run multiple tests, thinking it was strokes in the brain, but everything came back clear. He just got worse and worse. We were referred to a neurologist, who has done a spinal tap, an eeg, a mmr, and can find nothing wrong. He is now losing his ability to communicate almost completely. His words are so slurred, he is incomprehensible even to me much of the time. He will suddenly say something and I finally figure out he is repeating a line from some old 1960s or 70s song, over and over.

    We are American so I do have employer provided health insurance (which I pay about $250 a month to as my share, but there are huge deductibles, and we are already in deep medical debt. Our social security system says that it will take them about 6 to 8 months to make their determination as to his eligibility for disability benefits. Then, he might get his first check in April of 2018. I have to keep working to pay my mortgage and bills and buy food. So I have to leave him alone all day as home care visits cost more than I make.

    Has anyone here ever had someone get this bad this fast? He can barely walk now. I had to go out and buy him a walker for over $100. He is beginning to lose control of certain bodily functions, if you know what I mean (I do not want to get graphic because it is not pretty). I am all alone and have nobody to help. I am diabetic and have had heart attacks. I am finding it hard to get him up when he falls.

    I just need any advice from those who have gone through this too. This is the only forum I have found online.
  2. MaNaAk

    MaNaAk Registered User

    Jun 19, 2016
    Hello Yaya and Welcome to Talking point!

    This is a long shot but make sure that the doctors check your husband's hearing and they also need to check for diabetes. My dad was diagnosed with alzheimers in January 2017 and he has had diabetes for 30 years. Although my dad's diabetes did not affect his alzheimers I am told that undiagnosed diabetes can affect a person's memory and if your husband is diabetic then he needs his metformin medication looked at because anaemia is a side effect and this can affect the memory as well.

    Anyhow when I finally got dad to the doctors the looked at his ears and they were all blocked up and they had been blocked up for a long time. I then checked his hearing appointments and when he went to have his hearing aid test the prescription was FIVE years out of date!!!!!!!!!!!! In this country they send out reminders for optician appointments but not hearing appointments and the Alzheimers Society is campaigning for hearing appointments to be put in the same category as sight tests because of the link with dementia.

    My dad has moderate alzheimers but he is settled with his medication however his rate of deterioration was faster before he was diagnosed. He was putting things in odd places but what worried us most of all was the hallucinations. Now we are more used to it and in my case as the main carer I did realise that I was grieveing for my dad but I told myself tell myself that he is not in pain and that he is quite happy. When you get a diagnosis you will either feel relieved but you may also feel sad. Either way you will come to realise that life goes on and you will be blessed knowing that you are doing the best for your husband.

    Good luck

  3. Jean1234

    Jean1234 Registered User

    Mar 19, 2015
    Welcome to TP

    This has all happened so fast for you that you haven't had time to acclimatise to each deterioration caused by this dreadful disease, I really feel for you. I found everything was very scary until we had a definite diagnosis and after I had got over the initial shock and upset things did seem to get better to deal with as the help kicked in. Of course each time the person reaches another stage in dementia it takes a while to adjust to the new challenges it poses and I know I have hit rock bottom several times in this journey. But I have found Talking Point has been my saviour several times as it is a constant support no matter what time of day or night. We are very fortunate in the UK for all the help we get from our social services and our wonderful NHS but even so it can be a very lonely journey. My OH was officially diagnosed two years ago but had been showing symptoms for six years previous to that gradually getting worse each year. I do hope your social services will soon be able to give you more help. Keep coming back to TP.
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    Hi yayagoddess, welcome to TP
    I've no idea what yayagoddess means but it's a great site name:)
    My (late) mother was an American and I have as much family over your side of the pond as I do in the UK and it never ceases to surprise me that the USA has never got a grip of the healthcare situation and what it did try is being dismantled as we speak.
    If I go to see my GP, it's free, if they send me to see a hospital consultant, it's free, they want tests and scans, it's free. The only thing I have to pay for is prescriptions which are a fixed price of about $10(USD) per item. Under 16, over 60, pregnant or on a low income and they're free too. In other parts of the UK they're free to everyone.
    If you become ill then there are state benefits available to both the person who becomes ill and anyone who becomes their carer, they're not that much about $200(USD) a week, some get more, some get less, depends on your circumstances.
    I doubt the phrase you use "medical debt" can even exist in the UK.
    My (late) uncle was conscripted into the USAF during world war 2, he did 35 years before he left the service, the stories about what my cousins (his children) had to do to get him care when he became ill and again after he passed and their mother became ill with AZ shocked me compared to what would happen here.
    I was able to give up work with no mortgage and only manageable bills when my wife needed full time support, but I had the cushion of benefits, (paid quite quickly and backdated) to fall back on, I can only imagine how difficult it must be for you.
    I hope some of our American members on here are able to come and offer you some advise of a more practical nature.
  5. yayagoddess

    yayagoddess Registered User

    May 25, 2017
    Cleveland, Ohio, USA
    We lost the fight.


    It turned out that he had something called Fatal Frontotempolar Dementia with Progressive Supranuclear Palsy and Parkinsonism.

    My husband passed away at home the evening of Friday, July 14th, 2017, just about 5 months from onset. The end came peacefully, like a whisper.

    I held his hand and kept telling him that I loved him and that if he saw anyone he loved, like his mom, his older sister, Barb, or his Granny, to run to them and I'd be okay. He squeezed my hand three times and his breaths became more shallow and further apart until the next one did not come.

    The three time hand squeeze was just a secret little thing we could mean I love you, or whatever unspoken word of support or caring was needed in the moment.

    My David left this world as he lived in it, gently. July 20th would have been our 43rd wedding anniversary.
  6. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Oh I'm so sorry. My thoughts are with you.
  7. Nanawendy6

    Nanawendy6 Registered User

    Sep 17, 2014
    I'm so sorry for the loss of your wonderful gentle husband. My thoughts are with you at this very difficult time.
  8. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Oh my Yayagoddess how rapid this was. So very sorry for your loss, you must be heartbroken xxx
  9. Sandygirl

    Sandygirl Registered User

    Jul 24, 2017
    New Jersey, USA
    Dear YaYaGodess,

    My deepest condolences. How very hard for you. I hope you find peace and comfort in memories of your dear David.

    Gentle Hugs,
  10. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    Oh, Yayagoddess, this all happened so fast for must be in a state of shock. I am so, so sorry for your sad loss.
  11. LadyA

    LadyA Registered User

    Oct 19, 2009
    Oh, I'm so sorry to hear this. It must have been such a shock, to have him become so ill, and lose him so quickly. My condolences to you.
  12. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Oh I'm so sorry to read your news. Such a short time. Thinking of you and wishing you strength.
  13. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    Such a shock. So sorry for your loss.
  14. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    south-east London
    So sorry for your loss. I am glad the passing was a gentle one.
  15. Marcelle123

    Marcelle123 Registered User

    #15 Marcelle123, Jul 27, 2017
    Last edited: Jul 27, 2017
    This is such a sad story. I am so sorry for your loss. The shock and worry of it all is beyond imagination. Wishing you peace & strength to get through this time of trouble. And may your dear husband rest in peace.xx
  16. Casbow

    Casbow Registered User

    Sep 3, 2013
    I am so sorry. I send you my love and a hug and just want to say that I wish you peace.xx
  17. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    My deepest sympathy to you, how frightening that it happened so rapidly, you must be in shock. Do come to TP anytime, there is much sympathy, understanding and caring here and many who have lost their husbands and wives to this cruel disease. Thankfully your husband's passing was gentle, he sounded a gentle loving man.

    Meantime be kind to yourself during this most difficult time.

    Love to you and peace

    Loo xxx
  18. MollyD

    MollyD Registered User

    Mar 27, 2016
    I'm so sorry for your sad, sad loss, YaYaGoddess. X
  19. ellejay

    ellejay Registered User

    Jan 28, 2011
    I am so sorry, please accept my condolences x

    Lin x
  20. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    So very sorry to hear this. Such a rapid decline must be so difficult to deal with. My thoughts are with you.

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