1. AliceA

    AliceA Registered User

    May 27, 2016
    2,462
    I was expecting the company the OT organised to put a plinth under the toilet today. (They did not arrive )
    I was hoping to start preparing some purees in bulk. Silly me!
    Hanging around meant I snatched things for meals. Main today was a tin of marcaroni cheese whizzed with extra cheese, mustard, seasoning. dash of lemon juice. Cheap, tasty and quick. One to add to my emergency meals. I snatched an apple and cheese.
    I buy a catering pack of potatoe flakes, think of girls name beginning with M. Useful as mash or to thicken to get right consistency. One can mix hot of cold sometimes I use stock of some kind.
    I try so make it look presentable.
    Xxx
     
  2. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,429
    East of England
    I think you are absolutely right having had a chat to my daughter. She is particularly hurt by this turn of events. After your information about your father’s sister’s attitude, I decided that I had to put it to bed so I have hand written a note to my SIL saying I was stunned by what she had said, absolving her from having to visit again because I understand that she cannot face it but that she can change her mind and always be welcome. She must be very unhappy having lost her sister and virtually lost her brother by her own actions. It’s fair to say that if he didn’t have dementia none of this would have happened because he could have been the brother she needed. The ripples of this disease spread far and wide. So thank you for sharing your story which helped so much. That’s the best I can do for a fairly godmother but it’s you who were that, not me!
     
  3. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,429
    East of England
    I am getting the hang of this now, so instead of trying to get him something different, I just whiz up a portion of what I have prepared and so far so good. Your tips are good ones. Incidentally today he told me that it was the first time he had seen me eating! He is getting very confused and saying quite odd things.
     
  4. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,533
    well I’m delighted that I was your fairy godmother, that’s made me smile after a truly frustrating day.
    You have to pity those who cannot empathise with other people’s situations. At least on TP we are in similar boats & have some common experiences, & yet those with the most on their plates make time for others. Thank you for your kind words @Grahamstown, I will dust of the twinkle & try & get my sparkle back.

    A good nights sleep & a full belly should help!
    Xx
     
  5. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,429
    East of England
    I have sourced one of these. I think he needs it now because he has a bit of choking and coughing when drinking sometimes.
     
  6. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,429
    East of England
    Success with the cone mug and spout means that I can safely let him have tea in bed without him having to sit up too high, it’s brilliant. My blending strategy is still working and I know the foods he can manage without it. I don’t mind looking after him but I do mind being with him too much.
     
  7. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,247
    Female
    Chester
    I'm pleased these things are working for your OH, and hence hopefully helping you as well.
     
  8. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,429
    East of England
    A difficult day for me yesterday although he had a good birthday with our daughter for lunch and our son who popped in after work for a drink, although he didn’t remember from moment to moment that it was his birthday in spite of reminders. The paradox is that he can trot out the date any time but can’t relate it to the day because he doesn’t know what day, date, month it is now. Why was it difficult for me? Because I had to live the birthday for him, field the phone calls (the worst was from the sister who won’t be coming to see him again) and relay email messages and show him any ecards. This is the worst aspect of this caring role, having not only to look after the other person in all aspects of their lives but also having to live the remnants of their previous lives for them, which cuts you up all the time. I can just about get through the endless days, with help from TP, but these special days are hell now and I dread them. The absolute killer was a card from his grandchildren with beautifully written memories of times with him when they were little and he couldn’t remember them which were pretty memorable by any standards. The dreaded Christmas word has obviously cropped up and I have taken a firm stand to stay at home with him, with suggestions for visits. My husband won’t have much of a clue what is going on except media reminders which seem to wash over him.
     
  9. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    660
    Female
    New South Wales Australia
    Hello all - not reading in here much at present - I seem to be slogging along -

    but my husband had good results with another procedure on his oesophagus- he ate a bread roll for the first time in 9 months ! So almost anything might go down. Unlike your husband @Grahamstown - mine lives to eat!! So he is quickly putting on weight. The trouble is the disease has gone in another direction- he is now hallucinating- or waking up in the wrong time period - one day he is sure he is going in a bike race - the next he has to deliver stuff in the truck he once owned - it’s pretty tiresome - and frustrating- I can put on a good face mostly but getting very tired !
     
  10. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,429
    East of England
    Yesterday I had a very small party with two of our oldest friends to have the Virtual reality experience for my husband’s birthday. He was so pleased to see them, knew who they were but was not able to say much. He went first with the 3D headset and was not very happy because it was a bit fuzzy and he couldn’t relax and enter the world. We all had a viewing and it was amazing, as if I was there on a game drive through the African bush passing through the animals. Then the young man put a different film on and my husband agreed to have another try and this time he got the hang of it. The guy who brought this was super and so attentive. He takes this to care homes where the residents apparently love it. I suspect that mostly they are like my husband was six months ago but I think he is too ill now. I shall not be booking it again for my husband because of that, too late for him but we had a lovely party. It wasn’t a disaster because he did enjoy it by the second time but it’s not worth the effort. At this stage of the illness his short term memory is seconds, so short that you can hardly measure it and all the other areas of his being are sinking into a shell. His niece visited over the weekend and described him as being in the moment and only that, then it has gone. But in that moment he can enjoy her presence and then it’s gone.
     
  11. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    503
    Female
    Basingstoke, Hampshire
    It sounds great but like your husband my husband's short term memory is so short he wouldn't be able to follow it. I think your husband's niece has a good description of it, being in the moment.
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,696
    Kent
    Goodness! A new slant on living in the moment. :)
     
  13. Starting on a journey

    Starting on a journey Registered User

    Jul 9, 2019
    45
    That's interesting. My daughter has vr headsets in school and at the weekend we were preparing lessons with her looking for appropriate clips.
    We thought introducing a headset to mum might upset her, after reading this we might give it a go.
    I love them, they bring the world to life in the way that a video doesn't
     
  14. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,429
    East of England
    Further report about the VR, he had the headset on without any complaint but when it started he said it was fuzzy and he didn’t seem to be able to see the animals and then said to take it off. He had his head pointing upwards which meant he was looking at the sky. It was as if he was trying to keep his balance with this thing on his head. When I watched it, it was older format not HD, perfectly watchable and I loved it and saw all the things all around me, walking next to me. I encouraged him to have another try and this time it had an impact and today he was able to tell me he saw elephants, his favourite animals. So I think practice makes perfect. The young man asked me to invite other people and that made it a fun experience. You can ask for any type of film, cities, places you have been and so on. So another Virtual Reality party for a special occasion is not out of the question.
     
  15. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,429
    East of England
    I feel like screaming so I thought that I would better come and scream where nobody minds. The swings of the disease are what I find really difficult to cope with. Today up and dressed at 8.30 wanting tea. I feel like a servant being issued my orders, and I do know why he is like this, but it doesn’t help. Dozes instead of drinking and eating and needs constant reminders. Then the usual ‘I can’t eat all that’ at his breakfast, and he has taken to wanting to sit in his chair and watch me with a strange look on his face as I do all the chores! Ugh... After breakfast I thought that I couldn’t handle him sitting there dozing and watching me while I did the ironing so I suggested he went out for some sunshine and fresh air. Amazingly he put on his shoes but I had to get him into his coat and he went to potter around the gardens and then he disappeared. I left him to it thinking that he couldn’t actually get lost where we live and sure enough when I went out to find him he was shuffling back around the corner. I blame it on the VR on Monday and an outing to have a shave and a haircut yesterday, discombobulating his routine. Also I think I have stemmed the weight loss and he is feeling less weak, not brilliant but better. I sometimes think he would be better catered for in the care home, and then I think not when you think what a lottery it is. I have a strong feeling of wanting to escape today. I hope it will pass. Like everyone else I just wish he was like he was before.
     
  16. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    503
    Female
    Basingstoke, Hampshire
    I often feel like that. I did this morning when my usual routine was upset by having workmen in putting a new floor in the bathroom. My husband was walking around the flat moving things and giving me things saying "this needs putting away" and "this shouldn't be left here". I felt like screaming.
     
  17. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,584
    @Grahamstown dad is similar. I cut his hair last week because I couldn't face the effort of getting him in the car and then the barbers. He huffs and puffs over everything I give him however small it is but almost always eats it. I have confiscated his salt and pepper because he puts so much on his food that he ends up with a coughing fit and that is a concern because he is in danger of having a bleed so I put it on now and of course I don't put enough on.

    Dad should be in a care home but I would probably worry myself to death about him falling over.

    I feel for you and I want to escape too but I know I can't right now. I'm stuck.
     
  18. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,429
    East of England
    What a comfort to know I am not alone @jenniferjean and @Duggies-girl as we try to do our best. I shouldn’t complain because the Wednesday carer arrived and took over for shower shave and lunch, all of which he said no to but she is very good at cajoling him and he looked so good and had eaten a small lunch. So that’s one less stress for me today. The rate of weight loss has slowed so instead of two kgs in three weeks, it’s down to one over the past three weeks. There’s no way I can get any more into him so he is bound to keep fading away. He made an inappropriate remark to the carer today but fortunately she saw the funny side of it. As per other threads on TP, he told her that she had‘lovely little boobies’ when she bent over with a blouse that was a bit low cut. There you go, he would never in a thousand years have made such a remark before, but then he didn’t need help with personal care then either. I certainly hope this doesn’t get out of hand because then they may review their ability to help.
     
  19. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,429
    East of England
    The dietician came today and was very helpful even though I have been following the advice already with help from the forums that has made all the difference. She has ordered a second protein supplement from the GP, reassured me that I am doing all I can, and told me not to worry about feeding him main meals necessarily but to concentrate on sweet calorie rich food. She weighed him and confirmed my reading and said all we can aim for is to stop the rate of loss. Basically he is down another notch in the progress of the disease but at least I have had some support from the health care team. He needs basic nursing care now for all his needs although he is still continent and just about mobile.
     
  20. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,584
    He sounds just like dad @Grahamstown although dad can still manage scrambled egg with extra cream, I make it so runny it is almost a liquid. High calorie chocolate mousses but only one at a time now. Previously he would eat 3 in one go if I offered them, now it's a struggle to eat one. Yes I have upped the shakes again, fortunately we have a stash from when he was eating rather well.
    This time last year it was shepherds pie and all sorts of good things,

    So similar, just about mobile with his frame and still continent, thank god. Been out of bed for half an hour and now asleep in the chair so at least I can go and do his bit of shopping because he is not going to move.

    I have more or less forgotten about the cancer now, it seems irrelevant.

    It's dad's appearance that I find hardest, he has shrunk so much and is so bent with his frame.

    We have monthly phone calls from the hospice to check on dad and I always say he is doing okay but he is declining. I feel like time has slowed down and everything is passing me by and I know this can go on and on. For such a weak and sick man he is very strong somehow to keep going like he does.

    I may weigh him this afternoon.
     

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