1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

IF you can get out... does this help?

Discussion in 'I have a partner with dementia' started by Grahamstown, May 6, 2019.

  1. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,251
    East of England
    #21 Grahamstown, May 12, 2019
    Last edited: May 12, 2019
    Thank you @AliceA I shall try. He is back in bed and the sofa is still here because in the end the buyer couldn’t get a van to help. I don’t really mind but I didn’t get out waiting. I have been listening to Private Passions amongst other things on BBC Sounds. It was Richard Smith today and he talked about the NHS model being out of date and his views on over treating some conditions in certain situations. I have received our DNR forms from the doctor now so as to avoid inappropriate resuscitation in rather rare circumstances of cardiac or respiratory arrest. Glad to have done that for the future because neither of us is getting any younger.

    One and a half hours later he is back in bed but he has been agitating to go for about an hour. At this rate he will be in bed even longer than ever until he only gets up for food. He is pretty much only doing this as it is and only stays up because I insist until I run out of steam. This seems so abnormal even for Alzheimer’s and at the same time he says if I want to go to the cinema or out for a meal he will come too. The thought just chills me but this unreality is part of it I suppose l
     
  2. AliceA

    AliceA Registered User

    May 27, 2016
    2,245
    Difficult, I did hear someone once refer to wanderers or sleepers.

    We did see a play, the Mouse that Roared, last week. It entailed the right amount of rest before so took some planning. I had a fasting blood test so it was a long day as it was an early appointment.
    We rarely go out so I grabbed the opportunity.

    I am pleased you have the forms. We both have ones. One has to be practical and it does not mean no treatment although there is one for recurring conditions,
    A friend has one and he was annoyed it did not mean he could get out of appointments!

    The next Mooc dementia course starts this week then I have a course on Dysphagia to fit in but that is a short one.
    After that I have decided that I enjoy the study but I will only do ones for personal pleasure. I have done one just for me and the discussions were really good, it took me out of my self. It brought back earlier things I had done.

    Well you will soon be off, if your bag is heavy it could be me inside:).

    Xxx
     
  3. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,251
    East of England
    Lucky you but I remember the organising it took to go! The last film we saw was at 11am on New Year’s Eve, The Favourite, which was sufficiently colourful, funny and lovely to look at that it kept his attention. I couldn’t contemplate a film or a play now, maybe wrongly but my experience is that he is happiest at home, and would be very anxious, constantly wanting to go to the toilet and asking when are we going home. He would only go because of me so I haven’t tried it since then.

    I shall think of you and you can come vicariously. Packing light and have got most of it ready now. I have signed up for the MOOC course too, but it may be better to start when I get home.
     
  4. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    462
    North West
    Hi Grahamstown,

    My OH's mobility has declined considerably in the last few months and the inactivity was affecting me. I decided a few weeks ago to take a chance and go for a 20 minutes walk at mid-day. OH is not inclined to wander or go in the kitchen. My mid-morning walk is now an established thing. It keeps my steps up to a reasonable 8000 level and really improves my mood. On the days OH is at the day centre I go further. Now the weather is warming up I might have to change my walk to what you call the "quiet time". OH is still asleep in bed at nearly ten o'clock so probably would not miss me. Trouble is I take a while to get going myself in the morning.

    With so much caring for someone else we have to do what we can to keep ourselves fit for whatever life is going to throw at us.
     
  5. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,251
    East of England
    How similar our husbands are @rhubarbtree and so reassuring that this similarity is part of the disease. I have just had a visit from a home care team to help with his personal care, shower, shave, change of clothes, take for a walk and so on. Trying to get him to do these things is really a struggle for me that I am starting to dread it. They are offering me a three hour slot over the middle of the day once a week, which will be a great help, and if he worsens I can up it to twice a week or whatever I need. It makes me realise what we carers do all the time and I am beginning to be worn down by it all. The lady asked him what he used to do and he couldn’t remember, difficult to imagine the extent of the damage inside his head. Keep walking, and I shall go again today when he is resting as well as taking him for his little potter.
     
  6. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    462
    North West
    Yes I agree our OHs seem to be at the same stage.

    I am just about coping with the shower and shave pallaver. Glad you are getting help now. When I finish my walk, if OH is home, I collect him and do a potter round the block. I think it must be good for him, he shuffles along, head down, only looking up if I point something out. Someone asked OH what he used to do at the Alzheimer's cafe on Thursday. He just does not remember, even with prompting. Every memory has gone, long, short and middle.

    Yesterday my son was visiting so we all went for a walk. (I wanted my son to see what the situation is now). Anyway, a police car stopped in the middle of the road. They were searching for someone with dementia and I think they though they had found him. No I said "This one is mine". I did promise to keep an eye out.
     
  7. marionq

    marionq Registered User

    Apr 24, 2013
    5,752
    Female
    Scotland
    @rhubarbtree i actually smiled at your meeting with the police. At his worst I had ten police in my house over a two week period. I think they were relieved when he finally stopped escaping and wandering. They told me it was almost one a day they were searching for.

    Two years later when I was dealing with a scammer one of the policemen who turned up was the one who found my husband at the end of a ten hour period of being awol. He was amazed I still had John at home.
     
  8. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    462
    North West
    Hi marionq,

    I can well believe it is one a day. There were two reported on our local fb page this weekend. Fine weather encourages a wander I suppose. OH's only contact, so far, with police was at the very beginning when he could not find his car in a multi-storey. His navigation skills disappeared almost over night.

    Good that the police officer acknowledged your long term caring skills.
     
  9. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,251
    East of England
    I have packed his things for tomorrow to go to the respite care with him and when I said that I didn’t think he would need a jacket, he said that he had better take a jacket and tie for the evening.. This really upset me. Of course he is wanting to go to bed most of the evening but the old ways are ingrained. I left him dozing off and rather than sit down, brood and cry, I did as we have been doing and went out for an hour for a walk. I feel so much better and the sunshine is very beneficial. I even feel better writing this painful event down, thank goodness for TP.

    This week his knee has been hurting, so today I remembered the brace and stick but he still struggled. I have just thought that maybe it’s time for a wheelchair but it would have to have a little motor to enable me to push it as far as I want and up slopes. I have no idea about them but it would mean I could take him to favourite places where he is now struggling to walk any distance. I know his knee hurts but it is not just that, he is quite weak too. I did use a push wheelchair the other week but I can only do it on the flat even tar. Does anyone have experience with this?
     
  10. Bee.quilt

    Bee.quilt Registered User

    Dec 29, 2017
    78
    Dreadful to say it but reading all these posts is a comfort in a frightening way. My OH will not get out of bed unless I nag hard, and then he sits unshaven, unwashed in night clothes waiting for coffee and food. “Good here int it” is his frequent comment. As for walking....
    I have been lucky to have good health and no weight problems but now I find myself snacking on sweet stuff because getting meals for me then for him when he surfaces throughout the day is too much trouble. Good for all of you who manage time off to smell the roses. I never imagined an hours quiet ironing at 6 am would seem like a treat. We are wonderful people. A pat on the back to all of you and thanks for being there. Keep walking, keep talking, you help my day along when I’m going under. B xx
     
  11. marionq

    marionq Registered User

    Apr 24, 2013
    5,752
    Female
    Scotland
    @Grahamstown i use a wheelchair with John and am faced with the same problem of negotiating slopes. I just can’t do it. I now take the chair regularly on the local
    Bus to wherever I need us to be. I’m fairly clumsy with it but drivers and passengers are patient.

    I looked at motors for the chair but they are very expensive and very heavy.
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,125
    Kent
    Of course it did. It upset me too.
     
  13. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,251
    East of England
    ‘Hippocrates said that walking was man’s best medicine.’ This quote was especially relevant yesterday. I had had a bad night’s sleep and had to get up early. He didn’t get up until lunchtime again and was particularly weak and dependent which upset me greatly. So when he was settled after food and drink, I said that I was going for a walk, while I am still able to leave him for a limited time. I felt very tearful, the effort was great, fatigue does that to you, but gradually recovered as I walked, even though it was cold and drizzling constantly. By the time I got back I had my equilibrium back and was able to be kinder and calmer for the rest of the evening. So it works even in adverse conditions.
     
  14. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    97
    So agree. For my sanity I have to get out daily for 'me time', not to get away from him as such but to get away from his dementia and forget about it. Some of you are veritable saints the time you give to your loved one!
    I know Porthcawl well and the beaches mean it is a great place to walk. My mum lived there for many years and we enjoyed visiting when kids were young.
     
  15. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,251
    East of England
    So many similar experiences here, wanting to stay in bed, can’t dress properly, eat a meal so many small snacks, losing interest in anything. Up at 1.45 yesterday after I had been out shopping for basics, lunch and then I found some TV programmes that he liked so I left him for my walk and this time I walked so far that my right foot got sore! I left him for longer than usual but now he’s less mobile and seems to have forgotten about going to the pun it is less risky. He was absolutely fine when I got back, sitting in his chair and after supper it was ‘I want to settle down’ time which goes on all evening up and down the stairs. At least it’s some exercise. So he spent 15/24 hours in bed yesterday, a record. That seems to be the current pattern with minor variations. I had a pleasant time but two years ago we used to do that together and even last year he could manage half of the walk. Now he barely goes out or even wants to, so it’s solo life now.
     
  16. MoodyC

    MoodyC Registered User

    Sep 22, 2018
    31
    Dear All, thank you so much for sharing all your ideas on 'me' time. You voice all the feelings and views that weigh heavily on me. In some ways, it's a relief to know that I'm not the only one.
    I've learnt so much from all of you on TP and can say that I too, check in here several times a day.

    As I write my OH is hovering to talk about the model cars that he wants to 'hide' from everyone who might want to take them. It feels like there is very few ways to escape the monotony of caring and my physical and emotional wellbeing are fragile. A well meaning person from our local dementia group told me that taking omega oils would help with my wellbeing. I could've throttled her and can't face having her round her to help with 'signposting'.

    At the moment OH does not go to day care (refused point blank a few weeks ago) and although I have a couple of friends who can sit with him, he has been very unsettled of late (due to UTI's) and I then worry what's happening whilst I am out.

    I love the idea for just nipping out for a walk but I am not sure how OH would cope with being left now. He says he just wants to be with me and doesn't really have long daytime naps which would allow me to escape. It sounds like many of you have been able to put this into your routine that your cared for is used to it. Even if I walk around the garden, my little shadow will be there behind me...…………..
     
  17. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,251
    East of England
    These ‘helpful’ comments are the bane of my life, and it’s only when the person sees something first hand that they realise. When people say something like why don’t you do this or that I ask them if perhaps they would like to try it? They back off immediately. He is so much worse now that even the most unaware sort of person doesn’t try to suggest things. He has started having chewing problems but teeth are fine and now swallowing problems and I am starting to think that I must liquidise foods. He hasn’t choked yet thank goodness, but you have to be a step ahead. TP is the best support of all because it’s based on real experience not theoretical stuff. I have only been able to get out as much recently because he has worsened and doesn’t want to go out by himself and is safe on his bed. I can’t leave him too long though.
     
  18. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,251
    East of England
    Our previous comments look prophetic now because I have just had this comment in an email from the friend who is coming to sit with him tomorrow after I sent him a message about care and current situation. ‘...it is sad that he cant enjoy the things he used to. ...sitting by the pond and enjoying it, and the saddest thing is even if he is curtailed physically he cant just enjoy looking and reflecting.’ This is exactly the sort of remark that shows a complete lack of understanding of Alzheimer’s disease. He can still enjoy some things but he doesn’t conform to what others think he should be enjoying based on his previous life. I am at my wits end and feel like writing back that clearly I am not making a very good job of looking after him and they could do a much better effort. Better brains than his or mine have failed to understand what goes on inside the brains of such people with this disease, and I have failed to explain it to him. I shan’t write that of course, but some weasel words to reply. I feel very despairing because of course it is b....y sad and I have had a year and a half to come to terms with this. Maybe that’s what I should say?
     
  19. MoodyC

    MoodyC Registered User

    Sep 22, 2018
    31
    This well meaning person might feel differently once she has been with your OH for a while. But will she have more 'wise' words to share. Until you actually go through this nightmare yourself, day in day out, do you really get how hard it is.
    I've read quite a few of your posts Grahamstown and have learnt so much from them. You're right about this forum being heaps better than any support that's out there.
    We're very fortunate to have a voluntary group linked to our surgery who are on the end of a phone 24/7. It's run by ex professionals in this field and I don't know what we'd do without them.
     
  20. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,251
    East of England
    I would say that you don’t. I have just spent a hard 45 minutes getting him shaved, showered, hair washed and teeth cleaned, as well as putting his dirty clothes in the basket and clean clothes out for tomorrow. I haven’t done it for over a week because it’s an ordeal for him and a difficult job for me. I dread him collapsing even though there are grab rails and a slip mat, but he’s so far out of reality that he wouldn’t know what to do. He is absolutely exhausted and lying in bed watching his TV, jaw set and breathing heavily and blow me, sitting by a pond enjoying it, is not a priority for me! You can see that stupid remarks like that really get to me, however well intentioned. And the worst of it is that you can’t say it to the friend, a man actually, but thankfully I can say it here. Whew, feel better now!
     

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