New and feeling.....what?

Discussion in 'I have a partner with dementia' started by motherlily, Apr 28, 2014.

  1. motherlily

    motherlily Registered User

    Apr 22, 2014
    South Wales, UK
    Although only recently diagnosed with Frontotemporal Dementia, this was an unnamed and misunderstood demon we have had to battle with over many years. My loving, gentle husband became someone else and I, very much a victim of this disease, just as much as he. I am told that I am no longer his wife but his carer...when did that happen? I am struggling to find people willing to talk honestly and openly with me about FTD, even at clinic. I need help because I feel so alone - not sorry for myself, but alone.
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    #2 Izzy, Apr 28, 2014
    Last edited: Apr 28, 2014
    Good morning motherlily

    Welcome to TP.

    I'm so sorry to read about your husband's diagnosis. Although I have no experience of FTD I can very much empathise with the shift from wife to carer. I think this is something which happens so gradually you don't notice it at first. I still look on myself as a wife but I know a large part of our relationship now involves me as carer.

    I hope others with experience of FTD will be along soon.

    Take care. x
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    #3 Grannie G, Apr 28, 2014
    Last edited: Apr 28, 2014
    Hello motherlily

    Who told you you are just your husband`s carer? I object to that.

    I believed I was my husband`s wife throughout his illness , the only difference was the fact he was ill and my role was to adapt to what life had in store for us.

    I`m glad you have found Talking Point. It won`t take the dementia away but at least you`ll be with people who understand and will allow you to vouce your fears.

    FTD is becoming more widely diagnosed as more is learnt about it. Sadly we all seem to have to wait a long time for a diagnosis, especially while other causes for change are eliminated.

    My husband had Alzheimer`s , not FTD, but he changed too and although diagnosed in 2005, with hindsight we realised he had it since 1999.

    If your husband is showing any signs of losing his language, I would advise you to ask for referral to a Speech and Language Therapist.

    This fact sheet may help you.
  4. chick1962

    chick1962 Registered User

    Apr 3, 2014
    near Folkestone
    So sorry to hear of your story. Many of us are wives and I am too adjusting to being a carer more than a wife. It slowly takes over but we have got good days still where my loving husband comes through and I cherish these days. I try and look at positives rather than negatives but do get sad and down occasionally . Think we are moving to middle AD and things got a bit more tricky lately but I take it a day at a time that's all we can do xx

    Sent from my iPhone using Talking Point
  5. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    Welcome to TP, motherlily. This is a great site, where you will find many folk in a similar situation to yourself, who can give super advice. I say a "similar" situation, because we all have different things to cope with, when our husbands, or wives, have dementia, in any shape or form.

    I have received so much support and understanding from others on here because
    it is hard to find that from friends who are not going through the same thing. Nobody here judges you, and we are all waiting for each other, with open arms, to comfort in times of need.

    You can be sure that whenever things get too much, you can have a cyber-cry, or rant, on here, and you'll find empathy, sympathy and understanding. :)
  6. Spamar

    Spamar Registered User

    Oct 5, 2013
    We sleep in the same bed, but he is the person I care for, there is no husband left. I resent it.
  7. griffy

    griffy Registered User

    Jan 10, 2014
    Hi my mother has recently been diagnosed with FTD. Its all quite overwhelming but i take one day at a time. Its so sad to see LO fade away but keep posting on this site with any questions and they always post back with love, support and lots of encouragement. I find this site so inspirational.
  8. bilslin

    bilslin Registered User

    Jan 17, 2014
    I motherlily and welcome to TP. Sorry to hear about your'll never be alone here. So when you need to off load you've found the right place. Keep posting. Dementia so hard on everyone it touches. Take care lindax
  9. Jess26

    Jess26 Registered User

    Jan 5, 2011
    Well said Scarlett, good post :)
  10. Trisha4

    Trisha4 Registered User

    Jan 16, 2014
    I joined this site earlier this year with a post entitled 'I feel so alone' so I know exactly what you mean. When the person with dementia is the one you would have turned to for support and shared your feelings with you feel abandoned and alone. I did anyway. I was overwhelmed by the messages of understanding and support I received. I hope you find them helpful. I think the relationship must change and adapt to the circumstances. As someone else has said everyone's situation is different on here but there is a shared understanding, support and even humour at times. My thoughts are with you.
  11. Jinx

    Jinx Registered User

    Mar 13, 2014
    Motherlily, so understand what you're saying it is hard to have to do things for your husband that a short time ago you would never have dreamt you'd have to do, whilst having to try to protect his dignity and maintain what little remains of the relationship you once had. I so miss being able to have a sensible conversation and hate having to go along with all the gobbledegook just to try and keep things on an even keel. Big hug.

    Sent from my iPhone using Talking Point
  12. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    Thank you (she says, modestly lowering her eyes) ;)
  13. lu

    lu Registered User

    Feb 9, 2014
    welcome to tp, Motherlily....I am relatively new too. I have read the responses you have had and it has helped me also . That is the wonderful thing about talking is helpful to see the responses others receive. Please remember there are so many of us out there and this is such a good way to connect with those feelings. All sorts of emotions are with me, either by themselves or alone ie living with someone that is not the person he once was, never knowing the response you can get at any time, loss of hygiene, peeing wherever, mixing foods in the refrigerator, swearing, loss of affection, inability to make new friends, such sadness looking in his face and seeing his confusion, wishing it would just go away, knowing I am doing my best but feel that is not good enough. And, oh yes, other than family and close friends, the absence of visits like you would get if the patient had some surgery or other illness. Obviously, they are uncomfortable and don't know what to say. We have always been such social people, but how can you go out for dinner when he will remove his dentures at the table and lick them off. None of these are monumental but they cause daily stress. Stress is something you need to guard against as it can affect your health. I would suggest using daycare a couple of afternoons a not wait too long. My husband resisted at first but now looks forward to it. It is good for him to be away from me as well. I hate myself when I get cross...try to remember that we are humans and fall short sometimes but God forgives us. You sound like a very caring person and I am sure you will get the strength to be a wonderful one knows better than us how much is demanded of us, but we'll do it. Just keep in touch with all of us as we are always here.....
  14. JustNancy

    JustNancy Registered User

    Frontotemporal lobe dementia

    Hi MotherLily,
    My husband (age 62), was diagnosed with BvFTD initially over a year ago after being tested by a Neurologist, a NeuroPsychologist and a NeuroPsychiatrist. His symptoms started about 4 years ago. He has all the classic symptoms of behaviour variant Frontotemporal lobe dementia, hypersexuality, rude comments in public, pushing people out of his way, licking food of his plate in public, etc. After doing an MRI and finding no evidence of dementia they changed the diagnosis to Mild Cognitive Impairment, but feel he "probably" has some type of behaviour variant dementia. One doctor thinks Alzheimers, one doctor thinks BvFTD, the tests continue. Because he also has congestive heart failure, uncontrolled diabetes and atrial fibrillation they are unable to prescribe any medications for his behaviours. His short term memory is getting worse and his driving is reckless and scary even though he has passed the driving exam, he has had 4 or 5 fender benders in the past year. It is all so difficult to deal with and I find myself crying a lot lately, and also feel all alone and I understand how you feel.
    There is an online "FTD support forum" for people with the disease and also for caregivers.
    You will find a lot of information, support and understanding there.
    I also find it helpful to go to a dementia caregivers support group once a month where I live. You can PM me anytime and I will be happy to listen to and help you in any way that I can. JustNancy
  15. motherlily

    motherlily Registered User

    Apr 22, 2014
    South Wales, UK
    That feeling of 'alone-ness'

    Hi JustNancy, I have found my way back on to the site (forgotten password!) and found the replies I received from my message in April. I was stunned that people actually responded. I found their comments helpful but was particularly touched by yours. My husband's condition has progressed and probably just like you, I speak little of it. Recently he stabbed me in a 'red mist' moment (thankfully my hand took the force and no damage was done to my eye/face and I dealt with the stab without outside medical intervention). I decided to tell the 'professionals'. Their response was to me shown as 'mildly interested'. I guess there are practical forms of help, but what of the memory that lingers in my mind, the fear because I never saw it coming so it can happen again, at any moment. I am in no doubt that I am alone in this dreadful sage that unfolds before me - that I often feel engulfs me. It is hard enough to deal with the daily drama of FTD, but then we have to deal with the 'professionals'. I found it extremely difficult to speak out about such a powerful & dreadful intimacy, but was left with egg on my face when so little was made of such a disclosure. I was stabbed! My beautiful, love of my life, poor, poor husband, stabbed me...

  16. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Oh motherlily what a sad situation
    I don't really have advice - but much sympathy

    So very sorry that your agony wasn't recognised and that the professionals haven't stepped up to support.

    May I ,though, respectfully offer a few thoughts?
    Did you inform the police? In any other than dementia realm you underwent an attack - actually even in dementia realm. The police are not unsubtle in these situations and because they are called on the incident then is officially logged and can be referred back to if needed - and others have found that the police themselves have access to support agencies and can call those in on your behalf. So it may seem an extreme or disloyal act to contact them but actually they may be the ones to take you seriously. So, even now, you could do that.

    Hard as it may be to do, take a deep breath, screw up your courage and go back to SS to demand a re-assessment of you husband's care needs and a carers assessment for yourself. These are yours by right - don't let them shirk their responsibility - if they do nothing they are (to my mind) complicit in anything that may happen in the future, tell them that! Use those key words 'vulnerable adult' and 'at risk' they apply to both your husband and YOU.

    Visit your own GP to let him/her know YOUR state of mind at the moment. If you can't face talking, write a note to take along. Your GP needs to know the effect this is having on you.

    And, do you have a safe place in the house - room with a lock, and a phone/mobile? Just in case.

    Sorry to be so blunt - I've no wish to add to your woes - I am very concerned for you.
  17. Ms K

    Ms K Registered User

    Sep 16, 2015
    Fronto Temporal Dementia

    Hi Motherlily

    I recently joined the forum, my partner also has FTD which was recently diagnosed. I believe he has had it for about 3 years or more, memory and cognition problems have only really surfaced in the last year but he has deterioated a lot in the last year.

    We recently had an eposide of a few days of his mental state and behaviour getting really bad after two weeks of deterioration. In that time he saw his CPN twice but was in a calm state at each visit so the only response was we will review his meds. After many calls over the few days he had a meltdown and was going from one minute not letting me go and telling me he loved me too much to accusing me of trying to kill him the next minute then saying he was going to hang himself. He was very confused, scared and paranoid. I called the CPN during the meltdown and she arranged for the home assessment team to come and I also had to call the police, whilst I got to myself safely in the neighbours house. He ended up being sectioned that night for a period of 28 days which was two and a half weeks ago. It was hard for this to happen but it was necessarily, I was also close to breaking point as his behavour had got so bad and I believe another couple of weeks and I would have had a carers breakdown. They are trying different anti-phychotics at the moment but there has been no real change yet but in the meantime I can visit and spent some time with him whilst they try to get him stable, it is looking likely they will extend the section unless there is marked improvement in the next week. The hope is that we can achieve him being stable enough that he can come home with support. Although life has been stressful, especially leading up to this, the bonus will be that if he can come home we will finally have the support that was previously lacking and that they will need to make sure all is in place before he leaves hospital. I work full time and we have two children and it has been hard work trying to get the additional support beforehand to avoid the crisis in the first place, fortunately I have a very understanding boss.

    You do need to keep yourself safe. I don't know if you have any children or whether they are still at home but if so they need to feel safe as well so keep fighting for support. Ask for the needs assessment for both you and him from SS as previously suggested but try other avenues as well such as GP, CPN if he has one, local Alzeimers Society branch. If he makes you feel scared whilst you are waiting for the support to kick in then ring the police and medical services and say you need an urgent mental health assessment. I am sure that in his pre-dementia mind he would be horrified at the thought of harming you but unfortunately it is a risk that he could attack you again and you might not be as lucky next time with injuries. Always try and keep your mobile phone with you just in case you need to make a quick escape to either next door or a locked room.
  18. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Morning Motherlily
    just to say I'm thinking of you.
    A thoughtful response from Ms K - hope we have been of some support.
    Come back and let us know how you are
    Best wishes

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