1. AliceA

    AliceA Registered User

    May 27, 2016
    2,138
    You are absolutely right, Sylvia. We can give a map but each of us has to make our own journey.
    Each journey is unique depending on what we bring to the situation given our experiences.
    I have been privileged to have been the confident of many and I learned how different each journey is.

    I have been reading the Elizabeth Kubler Ross lectures compiled by Dr. Goran Grip.
    Death is of Vital Importance.
    She speaks of the best thing we can do for those we have in our care is to deal with our own issues, and to keep weeding out own garden. Then we can really care.
    She speaks about not letting our head knowledge trump our intuition. She was speaking in the main to medical staff.

    With our younger daughter who is quite wise, so wise she said to me when 16 I will be wiser than you but I am not ready for it yet. She was an amazing support when my father died. She is finding her own father's decline a very steep road.
    When my husband was gravely ill last time my prayer was for the very best outcome fo him (and our shared belief in life's journey), my crying for me was primeval, I buried my head so no one else would hear, nothing prepares us beforehand as you say, I am not sure we would survive any other way. Each day has enough problems of its own but gifts as well.
    Thank you for your quiet comforting words.
     
  2. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,189
    East of England
    I find I am moved to tears quite a lot lately and I am not sure why I am crying. Is it for him, is it for me or is it for my children. Perhaps it’s for my whole family. I am quite robust with family and friends in person and perhaps it’s because of that that I cry alone.

    I went off for the morning leaving him with notes and lunch although I was back for lunch myself. He was fine but I cannot leave him longer without someone else to check on him like yesterday. I went to our U3A meeting in the small town near the village where I used to live and heard a talk on the origins of jazz, really good with music illustrations. Such a great distraction and everyone knows him and asks after him, so caring are people in small towns and villages. I bought a small whiteboard as suggested by my son and when he saw it he was very pleased. I think it’s going to be better than a notepad which he tends to cover up with a magazine or something.

    Such lovely posts on TP today, such a comfort. Another programme we watched together last night was The Holocaust. It was marvellous and so moving and concentrates the mind about suffering and pain. My husband really entered into it again with shocked gasps and other noises, but he also laughs rather strangely in places where it’s not correct. I have noticed this before and it’s so annoying but he really can’t help it. It’s almost as if he must laugh or he would cry.
     
  3. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    445
    North West
    Hi Grahamstown,

    I was reading your posts about going to the cinema. I take OH most weeks to a lunch or early afternoon screening. I regard it as the last normal thing we do together. Although he does not say, I think he enjoys the outing and the hot chocolate to drink during the show. We went to see Ollie and Stan yesterday afternoon and I reckon there were about three other PWD in there with their carers. OH even had a couple of laughs at the film. Last week when we saw The Favourite OH was most shocked at the beginning when Abigale is pushed out of the carriage into the mud. "That wasn't very nice" he said quite loudly. If anyone heard it probably gave them a chuckle.

    It does take some logistical planning though. Toilet for him before we go in and then toilet for both of us on way out. That is the worst part. I run into the toilet undoing my trousers and run out again to catch him before he disappears. (Then I use a hand sanitiser).

    And probably most important of all it keeps me in life's loop giving me something to talk about.

    Just a reminder here about a CEA card £6 for a year and it allows carer into cinema and other places free.
     
  4. PalSal

    PalSal Registered User

    My OH has not enjoyed the movies for years. When we visited England we went with his sister to the Favorite..he slept mostly.
     
  5. AliceA

    AliceA Registered User

    May 27, 2016
    2,138
    #205 AliceA, Jan 29, 2019
    Last edited: Jan 29, 2019
    I find the slightest thing can bring tears to my eyes, tears are a release. Once I read that the chemicals in tears differ between tears of joy and tears of anger or sorrow. Not sure how scientific that's really is.

    We were given a ...flix card for Christmas so I have just registered. If the weather is colder we will cosy up indoors. I avoid signing up for anything so gift cards are easier.
    AnnE is on for series two, my husband enjoy the simple homely stories of series one not too taxing.
    I avoid some of the more challenging stories as where in the past they would have been fine, now we need calm, peace and laughter.
    At first I felt I was missing out but now it is what I need too.
    He will watch political programmes, we have to decide on whether they are fact, fiction, fantasy or horror.
     
  6. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,189
    East of England
    I have had exactly the same experiences and it did cheer me quite a bit because I was wondering if I could take him again. You have given me heart because he does enjoy it especially a drink afterwards. We couldn’t have one the other day because I was driving so had tea before. The toilet is my horror because he wants to go lots so I have to be very organised. I won’t rule it out I just need to recover and try again. The cinema does have dementia friendly screenings so I might have a look at that. My husband also really enjoyed the Favourite and was shocked horrified and laughed in equal measure, quite absorbed the whole way through.
     
  7. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    345
    Female
    Basingstoke, Hampshire
    It is worrying knowing what to do regarding toilet visits when out. At the moment I wait for my husband to come out of the mens toilet, then I get him to sit and instruct him to wait. It must seem strange to anyone around. "Sit there and hold on to the bag and don't move. Just wait there for me". Then I rush into the ladies. I'm dreading coming out one day and finding him missing.
     
  8. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    345
    Female
    Basingstoke, Hampshire
    I cry such a lot, more than ever in my life. I cry when things get tough for me, but I also cry about things not related to me. I cry about any sad thing I see on TV or read. I cry about posts I read here on TP. I just cry.
     
  9. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,189
    East of England
    If there is a disabled toilet I use take him into there, after all he is disabled. I do this when there is a possibility of getting lost or if I can’t wait outside. The first incident I had was last May in Gatwick Airport when I couldn’t see the toilet entrance and he said to wait near a postbox and I had no idea he could get lost. How wrong I was, and I never did that again.
     
  10. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,189
    East of England
    I am the same about things like music and if people are kind as well as the things you mentioned. I never used to be like this but this illness takes its toll. I well up when I see him walking ahead of me, so sad and not him at all.
     
  11. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    345
    Female
    Basingstoke, Hampshire
    When we are walking anywhere my husband insists on walking behind me. I have to keep turning to make sure he is still there. I think it's because he wants me in view all the time.
     
  12. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,455
    My dad does this. Sometimes I slow down and step back so I am next to him. He immediately steps back behind me. I have to keep looking over my shoulder. I have given up now.
     
  13. AliceA

    AliceA Registered User

    May 27, 2016
    2,138
    We need a hat with mirrors!
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,903
    Kent
    My husband used to walk behind me too but I held his hand so we were in contact. It slowed us down but that was no bad thing. What was bad was the damage it did to my back because I was walking at such a difficult angle.
     
  15. AliceA

    AliceA Registered User

    May 27, 2016
    2,138
    Mine has a stick or the Rollator so I can hear but if the surface is soft or he walks on the grass verge I have to turn.
     
  16. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    445
    North West
    Lost at Gatwick - oh dear the local shopping mall was bad enough. I like the hat with mirrors. I did lie in bed once and invented Alzheimer's handcuffs. Lock him onto a nearby pole while I went in the ladies. In the middle of the night it seemed a good idea.

    I have got a radar key. It was for me a few years ago but I was worried because I did not look disabled. A nurse said "You use it and you do not have to give anyone an explanation". Attitude - I love it.
     
  17. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,189
    East of England
    It’s nice to be able to write something good for a change, all part of the trying to have a normal life initiative. After a poor start to the day when he spent most of the day in bed, he finally perked up. Our daughter came for lunch and he stayed up long enough to see her, wouldn’t go for a walk with her and the dog for the first time ever and seemed quite unwell. Then we went to our neighbourhood get together at our local pub which he likes so much and therefore he was keen to go. We met some of our neighbours and had a drink and supper, he really enjoyed it, didn’t say much but what he did say was lucid. I really enjoyed having a nice chat, swopping stories and we came home happy. Glad I made the effort and we shall probably go to the next one. It really helped that he knew no one and no one knew anything about him so it was quite relaxed. Happy sleep tonight I hope.
     
  18. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    445
    North West
    The ups and downs all in one day are amazing. We are told to live for day in our case it is live for the hour. Glad you had a good supper.
     
  19. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,189
    East of England
    Yes indeed @rhubarbtree and today he is better. I took him to his old work place and he met two of his colleagues who were so pleased to see him. I had to drag him reluctantly but we had to pick up his computer which was in a terrible state. I have to run it because he can’t remember anything much. At the same time he appears lucid unless asked to do specific tasks like logging on and finding files, impossible. So so sad for him who used to do the most complex things on it. We had lunch in the staff restaurant and it’s all part of my current ‘living well with dementia’ initiative, so I guess the ad which irritated me so much has borne fruit. He is exhausted now and back in bed.
     
  20. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    4,985
    Female
    Chester
    I have to say the ad really irritated me as well. I understand what it means, that many people in the early stages of dementia can still have a good quality of life. But it doesn't seem to take into account the carer /partner of the PWD and their need for a good quality of life as well in the way it comes across.
     

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