1. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    365
    Sheffield
    That’s lovely that you have a little boy for company xx
     
  2. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Hello @Grahamstown Trying to keep track of where your OH is using find my iPhone sounds stressful. I wanted to let you know about an app we started using to check in on our then teenage daughters when they were out late (they called it stalking, and may be right). It’s called Life360 and is free. You install it on your phone, invite your OH, accept on his behalf on his phone, and hey presto, you can see him moving on a map in real time. You can also invite other people, eg family members or carers, but be aware that they can then also see where you are, in real time. Just thought it might be easier, but might be wrong x
     
  3. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,315
    East of England
    Thanks very much for your suggestion and I would try that if... Sadly he has deteriorated so much that he doesn’t want to go out now and I certainly wouldn’t want him to go alone. Today for example he has not been dressed all day, maybe a hang over from the heat yesterday. He doesn’t go out when I am out walking either. It’s a great sadness that as he has got worse I am able to go out for short periods walking, shopping, having a coffee with a friend. I have lost my companion of over 50 years to this destructive disease.
     
  4. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    I am so sorry. Bless you both xxx
     
  5. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,315
    East of England
    Thank you trekker, kind words go a long way. I have been trying to say this to some friends who are going through a great family trauma. They are sorry that they can’t do something for me but they can’t. Their words of support are enough and make such a difference and I try to be there for them. That’s all you can do I think.
     
  6. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,315
    East of England
    I have just had another family member to stay for a night, my husband’s niece in her late 40s, and I am exhausted from giving another crash course in dementia care. It is so difficult for people to understand that there is nothing you can do. She sees him struggling to eat and drink, not because he can’t but because he doesn’t want to, so she starts worrying about dehydration and starvation, which are not unreasonable worries, but what can be done about it when clearly this is not a medical emergency? I think that hospitals, doctors and drips are flitting through her mind. It didn’t help that he has taken another downturn, hasn’t wanted to get shaved or dressed for two days, and very confused and frail. It was a terrible shock which you can only realise if you are there 24/7. Also I still have to get food and drinks ready, plus all the things you have to think about with a visitor. It’s more work for me but she really means well and has said that she will come any time to look after him and work from our home if needed. He is confused and exhausted by her visit too, not really remembering her name or who she is or anything about her, and he knew her well. I did manage to get him shaved, showered and dressed today but after that he had to lie down and sleep for a while. He got up in time to say goodbye and he looked well and quite bright and she commented that if she had just seen him for that time she would have thought he was alright, so she has learned something at least. Trying to get back on an even keel now.
     
  7. AliceA

    AliceA Registered User

    May 27, 2016
    2,340
    Mine seems to be on par with yours. They could be twins!

    Someone, who should know better, rang me today having not been in touch for months, brightly asking how we were.
    I told her! I told her about the diarrhoea that we were coping with, the disturbed nights. The help suddenly withdrawn. The SS having to decide whether respite should come via on department or another.
    Eventually I handed her over, it was hilarious, after a few normal lines, my husband's eye was caught by something through the window, he rambled on about lots of cars, friends or even relatives turning up. Someone had a big bottle of drink. She really did not know what to say. I did not get back to say this was the world we lived in. Oh, a kylie has arrived, another phone call to surgery tomorrow. Just trying to keep someone hydrated who has no natural thirst is a job and a half.
     
  8. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,315
    East of England
    Today a bunch of balloons appeared in the area outside our window and he was very disturbed by these, kept asking who they belonged to, why they were there, where they had come from over and over again. When I got back from taking her to the station and he was in bed, I got them, popped them and put them in the bin. All forgotten, visitor and balloons!
     
  9. AliceA

    AliceA Registered User

    May 27, 2016
    2,340
    :)
     
  10. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,315
    East of England
    He seemed a bit brighter this morning so I helped him with Solitaire. His number skills and recognition are still there but not the rules of the game but it kept him engaged for 3 games. Then he was exhausted with the brain effort.
     
  11. AliceA

    AliceA Registered User

    May 27, 2016
    2,340
    Mine was just up in time for the SALT visit to test his swallow again, he had another choke while we were away. We are apparently doing the right things, I was asked whether I had been a nurse, I said no but this diagnosis means one learns quickly.
    So back to more pureed meals. Meals are taking a long time and he gets tired, so supplements suggested, Another visitor later about home care, so wait and see what if anything is offered. Now asleep! I would like to be!
     
  12. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    655
    Female
    New South Wales Australia
    I really have something interesting to report. My husband had his oesophagus procedure and has been progressively eating better - still soft foods but greater variety and nutrients !!
    Last Thursday I fell over running and broke a tendon in my right hang.:(
    My husband - bless him - has tried to step up and is now washing up!! He did it last night too. Maybe it’s the “host mode”. But I think nutrition and my disability has combined to good effect - he doesntt know what day it is - but I am enjoying the lighter relief. :p And Typing left hand :D
     
  13. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    462
    North West
    Hi Mudgee Joy,

    Good to hear your husband is helping. Sorry to hear about your fall. I badly cut my index finger on right hand a week or so ago. Totally useless with my left hand it had no power. My son who is in IT alternates between left and right with the mouse and has achieved equality. Too late for me.
     
  14. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    365
    Sheffield
    Sorry to hear about your fall, glad OH is helping you.
     
  15. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    655
    Female
    New South Wales Australia
    Thanks - it’s really surprising to me - I didn’t know he still had the capacity .
    I guess I normally do so much for him that he can just take it easy
     
  16. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,315
    East of England
    #636 Grahamstown, Aug 2, 2019
    Last edited: Aug 2, 2019
    I have been having great difficulty getting him to eat so I thought that today I would go a step further with presentation. I cut everything up into bite sized pieces and placed them individually on the plate in distinct parts. As a result there wasn’t too much food to overwhelm him as it appears when dished up normally. Yet another example of reverting to how I used to look after the children for his care, but I hate it, I really do. It’s yet another reminder of how bad he is. I registered the LPA for property and finance today and signed his tax return for him so down down down we go.
    Update
    So far so good, he has eaten it all and says he found it easier because it didn’t look too much. So cutting it up and placing it piece by piece is the way to go.
     
  17. AliceA

    AliceA Registered User

    May 27, 2016
    2,340
    My husband is in hospital via A&E. admitted Tuesday/Wednesday night, for chest infection, we could not rouse him. We got back about 4.00.
    He has been hiccuping 9 days, I did try and get medication got this but various delays. I am insisting on a care package on discharge.
    So when I have been home I have been juggling two counties trying to get them to coordinate.
    But there is so much hosting going on! Unbelievable, one nurse caring for him queried whether he had dementia.
    Wait and see I thought darkly!
     
  18. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,315
    East of England
    Oh Alice I feel for you with this questioning of his condition, it’s so upsetting and undermining for the person caring when it’s difficult enough as it is. It’s as if the burden is not heavy enough and has to be increased. I do get that with visiting friends but when my family members have actually stayed overnight, they know then! Incidentally my initial pleasure at his eating is now deflated by his appearance in his night clothes and announcing that he is going to bed and feels funny, something he has been complaining about recently. It’s 6 o’clock and the earliest that he has done this behaviour but he will be up and down saying goodnight for several hours. Needless to say he won’t eat. I managed to get him for a walk earlier, not very far but that may be why.
     
  19. AliceA

    AliceA Registered User

    May 27, 2016
    2,340
    It is difficult isn't it, quite tempting to question one's own sanity! I went to GP for both of us. I said I was very tired and achy. I had put on weight, she offered me medication as she keeps suggesting I am depressed!
    No I am just worn out! It is the physical and mental effort, the monitoring.
    I took them as I had welled up explaining, but having read the side effects including weight gain it hardened my resolve. I am not suicidal, I see the humour in the situation most of the time, not so much by the end of the day!
    I still have empathy, I have this place but also a group for shared interests and discussions. I have not lost interest in things I liked doing, just not the time or energy. I am excited by a book on the way!
    Now a prescription for good public transport, paid sitters, being taken out somewhere etc. Now that would be a prescription worth having. It is the sheer repetitive admin with people not getting back when promised that is my problem. Of course I may be wrong, I wonder if others have found these serotonin re uptake inhibitors any use.
    I dream, these dreams are important to me. They often have an answer to something going on in my life. I do not want to lose this gift.
    I am not unusual the idea of sleeping on a problem is not new.
     
  20. AliceA

    AliceA Registered User

    May 27, 2016
    2,340
    Hope you have a reasonable evening, mine fritters about for ages. 40 mins to clean his teeth.
     

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