Taking stock to try to mke sense of this Dementia

Discussion in 'I care for a person with dementia' started by nae sporran, Jan 4, 2016.

  1. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,529
    Male
    Bristol
    I hope nobody minds me just rambling to myself for 5 minutes.

    OH had a stroke in April 2011, she was actually making decent progress while the weather was dry and sunny and she could go out for short walks. We thought that full memory and rational thinking would return soon, she had made almost a full recovery from her previous stroke in 2005.

    When the memory clinic said she had early signs of vascular dementia in the spring of 2012 we thought that was something to deal with some time in the future, but not yet. She was still carrying on with occasional stalls at antiques fairs, with varying degrees of success, until UTIs meant we cancelled more than we actually attended. Thanks to the organisers and fellow stall holders for being so understanding in the most part.

    Then in Sept 2013 she had a fit or a seizure. The docs never quite confirmed exactly what happened, but it was scary when she had the second one while trapped in the ambulance due to some problem with the ramp. That was outside A&E. She went onto medication to stop the fits and to prevent UTIs which did eventually help to settle her down, but she was never the same again. Being discharged while slightly confused by a UTI and going to the toilet in the middle of the night in the front garden, with a readmission 6 hours after discharge was not a good start. She did get a care package at that stage, which has been patchy but is settling down. She was readmitted to hospital as a precaution after a bad episode in 2014, but has managed to stay out for a year and a half.

    So, I am just trying to work out whether it is the stroke, the dementia, the UTIs or the fit/seizure which is the biggest contributor to memory and rational thinking loss. I suppose they did say the dementia would get worse in stages and those were the stages, so should not be too surprised. On top of everything her daughter has been unwell all last year, adding to my responsibilities and OHs worries.

    Thank you for reading, just needed to work out where we are and how we got here. I am pleased I have found this forum, through the care support centre who were also very helpful.
     
  2. Lilac Blossom

    Lilac Blossom Registered User

    Oct 6, 2014
    499
    Scotland
    Bless you Nae Sporran, Sorry you have so much to contend with. I also try to make sense of the life we now have and you know what - my heid jist gangs roon 'n' roon trying to figure it out.

    As you say, daughter's illness adds to your worries and responsibilities.

    Like you, I am glad to have found this site - everyone so friendly and helpful.
     
  3. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,561
    North West
    She, and therefore you, have had an awful lot to contend with. I can well understand your wish to try and make sense of it all but I've come to realise that this may be impossible. So often when you ask a question about causes and developments the answer is along the lines of 'could be this, but on the other hand.....

    My wife was first referred to the memory clinic in 2000 and the dementia is pretty advance she also has Parkinson's symptoms and may have Parkinson's Disease, according to some medics. I try to concentrate on keeping her as calm, happy and healthy as I possibly can. I try to maintain the abilities she still has and to compensate for some she has lost. This is more than enough to think about, I find.
     
  4. Livveywills

    Livveywills Registered User

    Jul 11, 2015
    57
    My mum has vascular dementia diagnosed January 2013. I look back over the last 2 years and can hardly believe the changes that have taken place in her. I can identify with things moving in stages.

    I think the UTi's enhance the irrational thinking but I don't believe they do any long term damage once they have cleared up. I think that as the dementia is vascular it and the strokes are linked

    Our consultant described vascular dementia as lots of little tiny strokes happening which cause the nerves to die, this he said accounted for things like my mum having no ability with money or telling the time. I've noticed that some skills disappear overnight and then gradually can be re learnt - for example mum's phone where she just has to push one button to call us she had forgotten this during a hospital stay but has managed to relearn it. Other things once they are gone don't return.
     
  5. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,529
    Male
    Bristol

    Thank you all for taking the time to read my ramblngs and for your contributions.

    Lilac, thanks for the sympathy vote and you are probably right to say it just gets more confusing as you try to work it all out, but I had to put it all together in my mind.

    Stanley, you have even more to worry about than I have and you are a star if you can concentrate on making life as good as possible for your wife. That may be the best policy, however hard.

    I like your description of nerves dying and some recovering, but others never coming back, Livveywills. That probably covers the whole period from OH's stroke onwards.

    I hope that has done you all justice.
     
  6. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,561
    North West
    I should have added a bit about our experience of fits. Sue has had two fits (or what everyone calls fits) this year. The first one was devastating. Up to that point I had got her walking 5 miles every week though it was getting increasingly hard. Within 48 hours she had effectively lost her mobility. The second one, though very scary for me after the effect of the first, has not noticeably left any lasting effects. Even the first one failed to make an impression on how she is 'in herself' and has been for a long time.

    No-one can explain any of this with any degree of certainty. So I can hardly expect to make sense of it myself. That's my conclusion.
     
  7. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,529
    Male
    Bristol
    That is sad and very scary right enough Stanley, if I could not get out and about I don't know how I would cope. You and your wife have my fullest sympathy.
     
  8. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    I remember reading some advice on this forum about taking each day as it comes. As time goes on, I realise more and more that this advice makes the best sense.

    At the start of this journey with my parents-in-law, I was forever trying to analyse past events, trying to make sense of what is going on now, and with a view to working out what the future may hold. Ha ha! Who was it who said, 'Humans make plans to give God something to laugh about'!!
     
  9. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Hello nae sporran, my mum has vascular dementia and has had a series of TIAs. They seem deep brain and each one takes avluttle more of her memory. They have a much lesser impact on her physically. When they happen she stays in bed for about 7 days. I dont know if this is typical.
    I just want you to know your not alone. For me tp has been a life line. Nobody else really understands. One day at a time is my biggest learning about 5 years in. Dont write a disaster movie in your head about the future. Its never as bad as we imagine. Lots of love to you and your lovely lady.
     
  10. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,529
    Male
    Bristol
    Thanks for the advice Quilty. Now I have had time to read responses and think about it all, taking each day as it comes and getting on with caring the best I can is not as scary as it looked when I started to work it all out. It is good to know there are a few out there who understand especially on the days that is not as easy as it sounds.

    I am sorry to hear about your mum, staying in bed for 7 days at a time. All the best to you both.
     
  11. hvml

    hvml Registered User

    Oct 10, 2015
    300
    North Cornwall
    Hi nae sporran.

    I just wanted to say that I totally agree with what everyone has said. My dad had a stroke in 2012 and was diagnosed with vascular dementia after that, although he had been showing signs before.

    One day at a time is deffo the way forward. I have been caught out on numerous bad days, panicking and thinking - we won't be able to go on, we will have to start looking at homes, I'll have to.......and then, the next day is alright again. The worst setback we have had was quite recently, when dad went into respite for a week and the CH didn't walk with him at all. Left him in a wheelchair the whole 7 days and - unsurprisingly, he was off his legs when he came home. We have the Community nurses come in to dress a nasty ulcer and they acted quickly to get a hoist, electric stand aid and wheeled commode and at the time, they were much needed.( My brother and I had been lifting him manually from bed to wheelchair to toilet to easy chair ) In time, with a lot of chivvying, persuasion, encouragement, he has regained his confidence and abilities. The equipment is still needed at times, but....Dad is mobile again !!

    Some days are good, some he sleeps the clock round, some he watches a whole film - I never cease to be amazed on a daily basis!

    You and your OH have got so much to deal with, but I would like to say that amongst all the heartache, there are frequent uplifting moments for me and I'd like to hope that it will be the same for you.

    Heidi x
     
  12. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,529
    Male
    Bristol
    Thanks for that Heidi.

    OH has her mobility problems, not as bad as your dad.

    Her problem is ongoing knee and ankle strains from diabetes and previous injuries. Although lack of motivation, probably down to low confidence and reluctance to accept help are not helping We did manage was occasional days out to Sidmouth, Lynmouth and Dartmoor last summer, followed by complaints about lack of success from physio as the long autumn rains set in. She did enjoy sitting in the gardens at Sidmouth listening to a folk singer. But, your success with the lift and our few days out prove it is not impossible to pick up again in the spring, so I will take encouragement from your persuasion and chivvying to try to get her going again when we get some better weather.

    All the best to you, your brother and your dad. Rob
     
  13. hvml

    hvml Registered User

    Oct 10, 2015
    300
    North Cornwall
    Thanks Rob. You are right to think of Spring. It's just around the corner and will be so welcome. I'm glad to hear that your oh enjoyed the music . Dad does too. His favourite is Frank Sinatra and I have to admit that I have made a playlist for me on my phone . Have a good evening and keep yourselves warm and cosy in this wet old weather.

    Heidi x
     
  14. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,709
    Female
    Dundee
    I very much live by the taking one day at a time rule. It mostly works for me! I also think being able to come on here and just write about what's in my mind helps me sort things out.
     
  15. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,529
    Male
    Bristol
    OH likes a bit of Frank Sinatra too, anyone with a good voice whatever the style. Your dad and yourself have good taste. Forecast for Bristol tomorrow looks good so hopefully we get a bit of exercise.

    All the best, Heidi
     
  16. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,529
    Male
    Bristol
    I am glad I wrote it all down Izzy, if only to clear my head. But, getting on the positives thread and finally getting a couple of days sunshine helps both of us. But, so many people are saying to take it one day at a time, so that must be the secret.
     
  17. hvml

    hvml Registered User

    Oct 10, 2015
    300
    North Cornwall
    I hope today dawns bright and clear for you and OH Rob. I can't hear any rain hammering down, so that is a positive. Dad is actually a jazz man and has piles of discs, but he is like your OH and loves a good voice. He also really enjoys a good sing, especially when someone comes to play the piano. Have a good day and enjoy your exercise, weather permitting.

    All the best, Heidi
     
  18. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,529
    Male
    Bristol
    #18 nae sporran, Jan 6, 2016
    Last edited: Jan 6, 2016
    Morning Heidi. Looks dry so far and forecast was good, so hopefully we will get out and about after a slightly disrupted night. Enjoy the music, OH son plays piano and reckons its the best therapy. If only we could persuade him to visit more often, but that's another little bugbear. Rob
     

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