A lifelong friend and me

Discussion in 'I care for a person with dementia' started by Palerider, May 19, 2019.

  1. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,871
    Kent
    How long has this been possible @AliceA?

    I wish I could have viewed my elder granddaughter`s this way and perhaps I will be able to see my younger granddaughter when her time comes.
     
  2. AliceA

    AliceA Registered User

    May 27, 2016
    2,515
    I am not sure since when, I did not see our granddaughter but I did read her dissertation, my grandson told me about it, I had to do a search and that was complicated, then I watched it after the actual event. So I put in Manchester university then I found the day that the masters were graduating, he had a distinction so that seem to affect order. So I watched the whole thing. Well more than once!
    I have now found if I search his name I can see some of his work as a classical composer on YouTube.
    I shall do the same as a new piece is beening played at the end of June. The young just assume we have these skills!!!
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,871
    Kent
    How wonderful Alice.

    My granddaughter is also at Manchester University so when her time comes I`m sure my son will know.
     
  4. Palerider

    Palerider Registered User

    Aug 9, 2015
    957
    Male
    North West
    #64 Palerider, May 26, 2019
    Last edited: May 26, 2019
    Its something to think carefully about if working full-time, and when I started mum was relatively OK, but as time went by it got harder. Your grandchildren have both done well to complete let alone get a distinction

    I can imagine at the time in 1958 that you thought the pager was a great idea. Yes history does repeat itself unfortunately, whats that saying 'those who forget their past, are condemned to repeat it' -George Santayana. Here we are going backwards in terms of health and social care.

    Technology is the way forward, and there is a big change coming in the next 20 years in the health service -which can only be a good thing, lets hope some of that technology is developed in dementia care.

    I will go to my graduation, I just wish the circumstances were better, but I'm sure on the day I'll buck up and make the most of it :)
     
  5. Palerider

    Palerider Registered User

    Aug 9, 2015
    957
    Male
    North West
    Thanks Susan11
     
  6. Palerider

    Palerider Registered User

    Aug 9, 2015
    957
    Male
    North West
    Thanks everyone for the tips for online shopping. I have opened my account and we shall see.
     
  7. AliceA

    AliceA Registered User

    May 27, 2016
    2,515
    I am glad to hear that. Technology used wisely with compassion can be great. My caring tole would be impossible without the iPad and ability to live on line. Age, health and isolation issues would hinder me.
    In the sixties, my neighbour had a baby alarm, when she and her husband went for an evening walk she would bring the monitor into me. I could hear every rustle, when Mark made waking sounds I would reassure and be in like a shot. Once I was greeted by a puzzled child saying 'the wall has just spoken to me' I think we may confuse dementia people more if not careful on how and when to apply! Nothing like a smile and a bit of hand holding. However we need all the help we can get especially in monitoring health care.
    Share the date of your special day and we will all be cheering you on. X
     
  8. Palerider

    Palerider Registered User

    Aug 9, 2015
    957
    Male
    North West
    Yesterday was good day, despite mum only eating four mushrooms from the cooked breakfast I made. I hadn't brushed my hair and mum was insistant she brushed it for me, we both laughed as she tried to brush my hair. She remembered I used to be blond as a little boy and commented on it. She was in a good mood all day, and for the first time in months she had some clarity.

    Today, is different -a complete mood change. She has clearly got up way too early, I was shouted at as I greeted her good morning and then treated with silence. I'm waiting to see if she comes round or if there's something bothering her. Its going to be a long day if mum stays fixed in this mood. I think I spoke too soon in another post when I said we hadn't had a bad day for a few weeks. :(
     
  9. Palerider

    Palerider Registered User

    Aug 9, 2015
    957
    Male
    North West
    There are some things I can't talk about, I just nearly did in a comment, but then had to edit it. It gets me so emotive and upset. I'm talking about family and behaviour. All I will say at this point is that I had a long chat with a close friend of mine and I felt so strongly over things that if I have to take this journey alone without my brother, then he won't be there at the end of it with me.
     
  10. canary

    canary Registered User

    Feb 25, 2014
    10,779
    Female
    South coast
    ((((((((((((((((((hugs))))))))))))))) @Palerider
    There are things I cant write about too.
    Ive never been able to maintain one of these long journal type threads as I cant usually bring myself to say what is happening.
    Just post what you feel comfortable with.
     
  11. AliceA

    AliceA Registered User

    May 27, 2016
    2,515
    I have never wanted my own thread either, Canary and Palerider, some find it helpful, I may but I doubt it.
    I suppose I could write about my life but not about my husband's, I feel it would be disloyal.
    I feel those who write when they are left with memories are brave but it really helps others and gives hope. Kindreds care home journal is reassuring.
    When I do post, it is honest but measured too. I avoid names as most on here do.
    We all grieve for what we cannot have any more, I adjust then it catches me unawares.
    Part of me is grateful that I am the carer, the greater part, I would not want the other half of my life to suffer more than he does.
    Families are complex, some cope and some do not. I am just giving up expectations!
    As always we never really know the inner working of someone else, we just double guess.
    Writing helps but so does letting it go by shredding or burning.
     
  12. Palerider

    Palerider Registered User

    Aug 9, 2015
    957
    Male
    North West
    Thanks Canary and AliceA.

    We sometimes carry on settled in the thought that we've got everything sorted -or so we think. For me writing is a release, although I can't write about everything, some things I still can't make sense of, and probably never will. I also write because it may capture an experience or an emotion that someone else might not want to share, but they can identify with and know they are not alone. I do look at other posts and its good to see how some families pull together and help, no self interest (other than their own wellbeing) -I wish my situation were like that, but its not.

    Yes AliceA, we adjust, over and over, never really dealing with everything, sometimes pushing to the side things we don't have the time or inclination to deal with. Yes shredding an burning is a great way of finding release sometimes.

    I realise there is so much yet to come and to deal with on this journey, I'm not sure my eyes will always be open to it
     
  13. AliceA

    AliceA Registered User

    May 27, 2016
    2,515
    The last few years have taught me many things, my strengths, my weaknesses and ability for short cuts. What to cling to and what to let go.
    The fact I can plan but really have no control.
    My 'calm' plans preparing for a routine therapeutic endoscopy next week including prepping for my husband's needs have met a hitch or two, sapping my low energy even more. Sometimes I wish that individual doctors would realise that one part affects another part.
    And being a 24/7 carer affects all parts!
    So just feeling worn by too many appointments for both, transport is complicated, offers of help are too conditional.
    I think I need more sleep! Plus a computer that is not acting like a teenager.
     
  14. canary

    canary Registered User

    Feb 25, 2014
    10,779
    Female
    South coast
    I too wish that family would help. Our children are supportive, but live too far away to be able to help. He has brothers who live nearby, but we dont see them for literally months. It seems to be the common story on here. At least no-one is questioning my decisions.

    I too find it impossible to plan anything, which I find really frustrating as I am naturally a planner. Unfortunately, OHs sleeping patterns are becoming more and more erratic and there are so many things that suddenly become urgent and have to be sorted out immediately, that there is no time left for the planned stuff (sigh)
     
  15. Palerider

    Palerider Registered User

    Aug 9, 2015
    957
    Male
    North West
    I quite agree with you Canary. Luckily mum manages to sleep through the night at the moment so I'm lucky. When it comes to family I can only offer up a phrase mum use to say 'there's none so queer as folk'.

    Its harder to plan for anything these days, something always throws a spanner in the works. Still we must move forward (and then take two steps back) :(, glad your here x
     
  16. Palerider

    Palerider Registered User

    Aug 9, 2015
    957
    Male
    North West
    Thank you for such an open reply. I appreciated it. I chuckled at the last bit.

    I think having no control is the thing I resent the most, disempowered springs to mind in everyway possible. I think letting go is the hardest bit not just of mum, but other aspects to this situation where I once had hope. Maybe my weakness is in letting go, but thinking about this has made me realise that my strength is in seeking insight not just in the situation but in myself.
     
  17. Palerider

    Palerider Registered User

    Aug 9, 2015
    957
    Male
    North West
    Yesterday mum became quite confused and had packed a bag full of clothes to go for a drive and a brief pop to the shops. I managed to distract her and hide the bag of clothes before leaving. I have realised now that these little episodes are often due to the fact that she has become constipated as she takes painkillers for her OA as well as eating cake and chocky. Last night she took two senna and this morning is more herself, clearly having parted with the uncomfortable matter.

    Today she woke late again, came downstairs, gave my a lovely 'morning' greet, made her coffee and as usual dodged breakfast and went to sit in her chair. On the wall near the door is an old photo of me from my graduation at Liverpool and she was unusually commenting on it. I asked her if should could remember where it was. So I told her 'Liverpool Cathedral' -she said oh yes I remember it now, can I go to another one? Yes mum, your going to my masters graduation on 12th July, in a months time. Mum was oh lovely -can I come. Yes mum your coming. I have no idea where this came from because I haven't spoken to her about my recent success or the graduation ceremony in July (unless I have at some point in the past and she's somehow now remembered it in a jumbled way??).

    At the same time, she has forgot she's had a drink of coffee, said she hasn't had anything to drink and now made another one, while taking her dirty washing out of the washing machine having forgot it hasn't actually been washed. I have re-gathered the clothes and they are now in the wash.

    We will go for a short drive today I think, she looks tired and probably could do with a snooze this afternoon.
     
  18. AliceA

    AliceA Registered User

    May 27, 2016
    2,515
    From a personal growth point of view there is quite a learning curve, think some people pay thousands for such teachings!
    I do think letting go is the key, problem is the lock is a bit rusty sometimes!
    I was reading a sample of Ursula Le Gains translation of Tao te Ching, I may treat myself. I feel need for a treat coming on.
    Although the wise say true happiness is not needing or wanting anything, letting go again!
     
  19. canary

    canary Registered User

    Feb 25, 2014
    10,779
    Female
    South coast
    Ah yes, it used to affect mum too when she took co-codimol for her bad back.
     
  20. Palerider

    Palerider Registered User

    Aug 9, 2015
    957
    Male
    North West
    Yes she takes co-codamol 30/500 at night and in the morning, plus copious amounts of cake and/or chocolate
     

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