1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. AliceA

    AliceA Registered User

    May 27, 2016
    2,415
    I think the brain is such a mystery. It is too easy to make assumptions, I read a book by Bruce Lipton, quite a long time ago explaining the brain is plastic in as much as it reforms pathways if some get overloaded. I like your expression reboot.
    With my husband so much depends on energy levels not too much and not too little.
    I feel is is like a see/saw with me moving to balancing both ends!
    Days vary so much. We are dealing with a condition Vascular so we have 'platforms' but these are not smooth.
    I do not know what caused the condition to start, we lived a healthy lifestyle. I smile ruefully when I read of the advice to avoid dementias. I was told that it could have been worse depending on which part of brain is affected.
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,925
    N Ireland
    Hi Alice, yes the brain is a bit of a mystery.

    My wife is described as having "a significant vascular element" to her dementia. Small vessel damage showed up on the very first scans. Unfortunately she did not live a healthy lifestyle before she met me and I struggle with her now. Of course, a good lifestyle will help to minimise the risks of dementia, but won't eliminate them. Lifestyle factors are thought to contribute only some 30-35% of the overall risk factors anyway.
     
  3. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,321
    Female
    South of the Border
    My OH only ever had one scan - I was not told he was having the scan, nor was I told the result or implications as he was in hospital on a very serious unrelated matter.
    When I received the discharge letter -which he had no interest in - I read the words "small vessel damage" and had absolutely no idea what it meant. I read the word 'small' as meaning little, as in less rather than more.
    It took me quite a bit of googling to come up with what these 3 words meant, and no one has ever explained them to me.
    I wonder if you can enlighten me further @karaokePete?

    I rationalise the information passed to us by hospital professionals thus:-

    They do not know us
    They will probably never see us again
    They do not know our level of understanding
    They just say it as it is - with the thought that someone else down the line will explain further
    I cannot blame their approach - it seems sensible to me.
     
  4. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,925
    N Ireland
    #264 karaokePete, Jan 2, 2019
    Last edited: Jan 2, 2019
    Hi @maryjoan, the scan results are a moot point. No one ever told me, or my wife, either. I asked for copies of the reports received from the Consultant by our GP.

    Small vessel damage showed in a CT scan. Further small vessel damage showed on a MRI scan and then this damage plus Frontal Lobe Pathology showed on a PET scan. Mixed dementia is the diagnosis and, indeed, the symptoms displayed.

    The small vessels will be capillaries etc., and it’s these that feed into the tissue. If these small vessels get damaged, by strokes, or other means, the blood flow to the brain tissue will be impaired and cells will die. If you have stroke damage and have more mini or major strokes further damage will occur and this gives vascular dementia it’s stepped progression. My wife didn’t have evidence of strokes but was a smoker for 30 years and had/has raised cholesterol so the damage is likely from that. The interesting fact about the vascular system is that it is one big overall system so the damage like my wife’s is likely to be in places other than her brain too. This makes it a possibility that she may have a massive stroke or heart attack that will make her worse or take her out one day - a point I raised with the GP and with which he agreed.

    Unfortunately the dementia makes my wife resist my attempts to make her present lifestyle more ‘small vessel friendly’. Dementia related apathy and sweet tooth see to that.
     
  5. AliceA

    AliceA Registered User

    May 27, 2016
    2,415
    #265 AliceA, Jan 2, 2019
    Last edited: Jan 2, 2019
    My husband started to show Parkinson symptoms. He was referred to a consultant who ordered a scan as he ruled out Parkinson's.
    This showed severe small vessel disease in part of the brain but not in speech and mobility areas. We felt lucky about this. I was warned it could change.
    The memory nurse visited at home and also the SALT team as his pneumonia was caused by ingesting food when swallowing so he was shown techniques that I ensure he follows. He cannot be left as he could choke.
    A further test/scan requested by new GP has been refused as the deterioration was "the nature of the disease".
    The memory nurse who came originally answered my questions. She did emphasise the lack of empathy as one of the first things to go. I am blessed with this as it has helped me understand, it still can hurt and it is a big hole in my life. But learning not to expect or take it personally has helped.
    He does take a small aspirin to help keep his low blood pressure even lower. This has problems of its own.
    I feel Carers need more help in caring full stop.
    We were fortunate to get the diagnosis but this was partly brought to the fore because of a previous chest infection and a two week hospital stay followed by hospital at home.
    I originally reported memory issues 15 years previously, he was also having circulation problems not fully addressed. This was ignored.

    I concur with what Pete says, the apathy makes things worse, I try to combat that sometimes it works and sometimes not. Tiredness levels are a key. Too much energy causes agitation, too little causes apathy. It is an everchanging situation. Sometimes I feel I am a full time therapist!
     
  6. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,321
    Female
    South of the Border
    Thank you for that @AliceA and @karaokePete - each bit of knowledge does help to build the jig saw - its like the baked beans jigsaw isn't it??
    Good night all
     
  7. AliceA

    AliceA Registered User

    May 27, 2016
    2,415
    Hope you have a good day. Yes it is a jigsaw. Aptly put.
     
  8. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,321
    Female
    South of the Border
    OK, Todays Tipping Point.

    Daughter comes over to take OH for his weekly trek to buy yoghurts in town 10 miles away. She takes 2 year old with her, leaving 7 year old with me, and we have a lovely time.
    Daughter's car breaks down in supermarket car park. She has recovery which will take her to her home address 25 miles in opposite direction.
    What to do? OH is where granddaughter should be and granddaughter is where OH should be- there are no buses for almost 3 hours. We do not have a car anymore.
    Solution, ring for taxi to pick up me and granddaughter, take us to daughter, return granddaughter to Mummy, and then bring OH back home - sounds good.

    Ring several taxi firms, but no one can do it within 2/3 hours.

    Meanwhile OH has decided to walk from supermarket into town for a light bulb (?!) Daughter tries to stop him - but he is not her father, or step father, he is my partner and takes no notice.

    I phone him and tell him to go back to car - he is objecting until I explain I am trying to get him home. He now decides he wants me to bring a shopping trolley(?!)

    Meanwhile ring round friends and neighbours asking for lift -no one home.
    Call on nearby neighbour who happens to be a clergyman and a lovely chap, but he is on his way to nearby village to welcome a coffin into the church.

    Beginning to panic now, as I cannot see a resolution, and I know daughter is somewhat adrift with OH and his dementia.

    Resolved - lovely car recovery man has replaced car battery and it seems to wish to go now, so daughter ( exhausted) returns OH to me, am also exhausted after watching and taking part in a 7 year olds 'magic show' whilst trying not to worry over situation.

    OH comes home, has lunch and snoozes afternoon away.

    Me? I am writing to you, because it is a stressful day, and it makes me realise that what can go wrong does go wrong.
     
  9. Rosebush

    Rosebush Registered User

    Apr 2, 2018
    1,478
    Well done maryjoan, I think you and your daughter deserve a medal, hope you have a peaceful evening.x
     
  10. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,400
    East of England
    Oh my goodness how are you still in one piece? That’s one of the most stressful things, when There Is Nothing You Can Do! Calming thoughts ~~~ although you sound calm now? The power of TP.
     
  11. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    473
    Female
    Basingstoke, Hampshire
    That must have been really frightening for you. Awful when there appears to be nothing you can do, and scary for your daughter too. I hope it hasn't put her off taking him out.
     
  12. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,321
    Female
    South of the Border
    So do I !!!!
     
  13. Dutchman

    Dutchman Registered User

    May 26, 2017
    367
    Male
    Devon
    Hi Kindred. My wife seems to be better but, of course, once it’s happened it could again. And, of course, thoughts of arrangements further down the line aren’t too far away. Finance and care enter my mind now and again as does being on my own which I’ve never experienced for that very long. I’m pretty independent and can, I’m sure , look after myself, but that’s me thinking with my wife still around although I do most things now. Actual aloneness can be very different. Your thoughts and others (warmest thanks to you all) are comforting as they show I’m not that unusually selfish or self centred in what I’m going through.
     
  14. Dutchman

    Dutchman Registered User

    May 26, 2017
    367
    Male
    Devon
    Hi There. Just noticed that you mentioned a course. Do you have the details please as anything like this might help me. Many thanks
     
  15. AliceA

    AliceA Registered User

    May 27, 2016
    2,415
    Just picking this up, how frightening for you all. MaryJoan I am glad that it ended well.

    I am please to hear that you wife is better, Dutchman, these warnings are scary. It forces us to look at possible futures ahead.
    I think most of us learn to cope with the practical side of life, I project managed building work this year, normally I would have just had to come up with ideas and my husband did it.
    The new normal means we, who care, take on many new skills, but the deep loneliness is a dark pit we all dread.
    Being alone is one thing, not having that one person who understands for better and worst, inside and out is so completely different.
    Like you I am extremely concerned about care and finances at some point in future. It seems a minefield with moving goal posts.
    I have done my best to allow us to stay at home for as long as humanly possible.
    I know the savings will not last that long, there is little guidance.
    In our area there is little choice, I am already fighting the fact that our nearest facilities are just across the county border. Be it NHS or care services, so near and yet so far. The austerity cuts have completely axed services.
    This does not bode well for the future.
    So I do understand your own concerns. Like many our present life has made me especially more isolated, we lived a full active useful life for the best part of our retirement.
    I know it is extremely difficult but try not to let the worry of the future spoil today.
    On the other hand we do have to be aware, catch 22 isn't it.
     
  16. PalSal

    PalSal Registered User

    @karaokePete
    One of my big projects at Novartis in 2011 was on Music, Motion and the Brain. Dr.Oliver Sacks (who speaks on this video of Henry) was involved but in the end could not come to Switzerland and sent his colleague, Dr. Connie Tomaino. She and he worked together for over 40 years. They were (and she continues to be, he has passed away) outspoken innovators and advocators in the effects of music on the damaged brain, whether Alzheimers or other trauma. I arranged a week of panel discussions and exercises and live music on the Novartis campus. It was fascinating experience for me.
     
  17. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,925
    N Ireland
    It was the online UTAS course that is run at regular intervals and usually mentioned on the forum when they are enrolling. Keep your eyes peeled for the next one. It was very good.

    I also did a carers course in my own locality. It wasn't as good as learning from the forum, but better than nothing. These courses rely on local funding so may not be available everywhere (I did the last one in my area). If you try your local AS office they may be able to assist https://www.alzheimers.org.uk/find-support-near-you
     
  18. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,400
    East of England
    Is this the university of tasmania online course. That’s what came up when I looked for it?
     
  19. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,925
    N Ireland
    That's it.:)
     
  20. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,400
    East of England
    I have signed up for this starting February, glad I saw your post.
     

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