Don't know where to start

Discussion in 'I have a partner with dementia' started by jeenie40, Oct 21, 2016.

  1. jeenie40

    jeenie40 Registered User

    Hi my name is Jeenie and my oh was dx with vascular dementia just two weeks ago, apparently caused by having a slight stroke sometime ago, that we have not been aware of, we have a doctor's app this morning, requested, by me to discuss this dx, but I'm lying here in bed not being able to sleep, worried about what to say, or ask, to get the best out of the app, I know it's late and I may not get any feedback in time to help us, I have been reading posts etc to get some ideas of what to ask. there so much information and stories I have just got overwhelmed anyway thanks in advance for reading t c xx
  2. MollyD

    MollyD Registered User

    Mar 27, 2016
    Oh, Jeenie. You must be reeling.

    You need support. If it's a consultant's appt try to have a list of all symptoms, patterns which manifest with your OH's dementia (agitation, sundowning, restlessness, sleeplessness etc ). Ask about medication options whether or not they are necessary yet. At least ask about options.

    If it's your GP also ask about Social Service supports, District Nurse contact number for your area, SS care packages, support groups etc.

    Others will probably have more and better pointers, I really just want to send my support. It's a daunting period and the more access you have to support systems the better.

    (My mum hss vascular dementia).

    Wishing you well tomorrow. Keep posting if you need to.

    Virtual hug x
  3. Willow Tree

    Willow Tree Registered User

    Jul 6, 2016
    #3 Willow Tree, Oct 21, 2016
    Last edited: Oct 21, 2016
    Hi, Jeenie--

    Just wanted to offer you some support and a cyberhug.

    It's scary, just starting out on this journey, but I want to give you a bit of encouragement and let you know that, at least in my opinion, it is much EASIER to deal with when you actually have a diagnosis and an understanding of what it is that "isn't quite right."

    My husband has Parkinson's disease and some vascular issues. His issues come and go, and this was one of the most difficult parts to adjust to--the variability and unpredictability of his personality.

    I think you're on the right track and the professionals will be able to give you more information at your appointment. Then you can do some online research and learn more from Posters here, as well as Post specific questions/concerns.

    So many have walked this path before & are kind enough to check in here periodically and answer questions.

    Just want to let you know you're in a welcoming place and we wish you and your husband well.

    I'm sure others with specific ideas/experiences related to vascular dementia will be along to share some hope and help soon.

    Willow Tree

    P.S. One important tip: ALWAYS take a notebook and pen to the appointements and make notes of what is said. You won't remember it all, unless you write it down. I even write down my hubby's blood pressure readings, weight, & temperature when they take it, just for the record. Don't be afraid to ask the doctor to spell the diagnosis, condition, or a test he's ordering if you don't know how to spell it; in my experience, they're willing to explain to patients who express interest & concern.
  4. Ecognome

    Ecognome Registered User

    Aug 28, 2016
    Hi Jeenie
    My heart goes out to you both! Been where you are now just over ten years ago!
    I am assuming your oh has had a scan recently which has shown up historic vascular damage?
    If this is so ask to see the scan and ask them to show and explain where and what the damage is!
    Different bits of the brain do different jobs!
    So if possible find out where the damage is!
    Ask directly for an explanation of what that bit of the brain controls or does! Ask how the damage may manifest its self in future life! Memory, control of limbs or sence in feeling of parts of the body.

    In my own case short term memory is affected,
    I have no feeling on left side of my face.
    I suffer at times with vertigo/ balance problems.
    My hearing has been affected.
    I am lucky so far that things have not as such increased!
    I was just last week looking at a scan done on me, the thing is ten years on I know what to look for and also what my older scans showed.
    This is all new to you, so it's going to be a learning curve.

    My oh had very servere major strokes three years ago!
    Her left side is semi paralyzed and she sadly lost her sight.
    She has what we call D moments! She is affected with servere short term memory loss at times and looses herself mid conversation!

    I have many questions to ask so I might be able to help. The problem with this is there is no norm every case is individual and different!

    I hope and pray for you both today, that you will hear that the damage is minimal and long term prognosis is to be with minimal effect.

    I will be thinking of you today!
  5. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Jeenie - well done for finding Talking Point and posting here in the early hours. That's what it's here for. Wishing you all the best for today. x
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
  7. jeenie40

    jeenie40 Registered User

    Thank you so much for all your comments, The gp had little info, as he has not received any report yet, and suggested we get in touch with Alzheimer's, to be honest we don't much like this gp, we where allocated to him. as we are in our 70s ( my oh is 77 and I am 76) he just waffles on, and we can hardly hear him sometimes, and end up more confused than ever before, I am following up on what you all have said, I think my best option is to read as much as I can on here, I have just received this morning some info in the post from Alzimers, which as a booklet in that looks interesting. Thanks again for all your replies, take care everyone
  8. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    morning jeenie40
    a warm welcome to TP :)

    such a shame the GP you were allocated isn't really suitable for you and OH - when you make appointments, ask to see another GP at the practice you do have a right to do so - maybe he was more helpful yesterday
    maybe also ask if there is a CPN (Community Psychiatric Nurse) you could deal with as they are specifically trained

    I used to jot down anything that occurred to me in a particular notebook so that I had a list of questions any time I went to see a GP or consultant and a list of appointments with where, reason for it and outcome - actually, I kept a brief daily log of my dad's situation, just so I could see for myself when anything cropped up or changed - I put in good things too eg dad had really enjoyed a visit somewhere and had told me some family history linked to it

    this AS link to find local services may help you!/search

    if you are willing, maybe add an indication of where you live to your profile (nothing specific, maybe largest/nearest town or county/Local Authority); members in that area may have knowledge of carers/dementia cafes you might go to and chat with people in similar circumstances

    keep posting, for me, TP is the best resource I have come across, everyone here is so supportive

    best wishes
  9. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    Welcome Jeenie, I am sorry your husband has been diagnosed, but good you have found this place and be assured life does not stop because of the diagnosis, there can still be many good times.

    The GP who gave my OH the diagnosis was quite horrible really, just - this and this, no medication available. Go and make the most of your lives (my husband already had v impaired mobility). He was very cross that we asked for a referral to a consultant and the consultant was equally and similarly dismissive. I very much hope this doesn't happen to you and you find someone informative and sympathetic but be prepared. We were not given any information about support groups or anything so I would suggest you find out what is available in your area even if you don't want to access them yet. On the Alzheimer's Society home page there is a facility to put in your post code and do a search for local resources.

    I hope you find TP as supportive and helpful as many of us do.
  10. pussygalore

    pussygalore Registered User

    Oct 25, 2015

    How disappointing that you GP could not offer you much advice. When my partner started showing signs of Dementia our GP was our first port of call. She did various memory tests and then arranged for an appointment with the Mental Health Department where a brain scan was carried out and a diagnosis of Early Onset Dementia. The Mental Health Nurse was assigned for regular visits and a social worker. This all happened very quickly and the advice and help they offered has been invaluable. My partner is now into the serious stage of his Dementia (he is 74) and he was only diagnosed 4 years ago although the symptoms where there long before that. May I suggest, if you are able, to change your GP as all the support is out there you just have to be put on the right road to start the journey. Wishing you all the very best.

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