1. canary

    canary Registered User

    Feb 25, 2014
    9,855
    Female
    South coast
    We would all like our old life back and live "normally" @Grahamstown but when you are caring (especially with dementia) its not possible and there has to be compromises (all on our side). If your OH can be left for a short time, that is great, but if not then develop a passion for things that can be done at home - birdwatching, knitting, researching your family tree, or otherwise get in sitters.

    Have a great time at the cinema :)
    What are you going to see?
     
  2. AliceA

    AliceA Registered User

    May 27, 2016
    2,231
    My visitor came and went. Since then I have read the complete article.
    I do understand that it does not give the support that many of us individually need. It will not help in the middle of the night or clear up a mess.

    But I do not think I can knock it. Almost everything is sponsored these days, I avoid clothes etc with names on show, I say I never signed up to be a a advertising hoarding.
    But the reality is I would be able to buy so few goods if I applied it to everything I bought.

    It is sowing seeds, perhaps no much use to us at present but hopefully in future when our children have to cope.

    To be fair it said to live as normally as possible, it did seem to put a limit on what it could achieve. The more Dementia Friendly stickers the better, there will be more funding when people become aware, when people face the fact it could be them.

    Along side this variety of illness there is a degree of depression too. Getting out anywhere for us is a bonus.
    I went into a supermarket this week, I really enjoyed looking and comparing in person. I dislike shopping but having not been near a real shop for several weeks it has become a treat. Quite unbelievable!
    Just shows how my life has altered and also what I now appreciate.
    Those people in Merton enjoyed the contact, the fun and that is a bonus as we all can become shut ins.

    My visitor has offered to take us out one Sunday, an unexpected bonus. This happened because the RVS invited us to a tea at Christmas. So from little acorns ...................

    There is no normal in life, it is everchanging. Who would have thought I would spend precious energy playing Beatle. The joy on the face of the person who won was amazing, she used to be a senior nurse, in charge.
    Now she is not altogether in charge of her thoughts.
     
  3. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,243
    East of England
    Thank you for your kind words @canary I guess I hit that low that we all do sometimes. I decided that he might like to come to see ‘Vice’ too and he said he would so we shall go together. I have been listening to Madame Butterfly this evening and wept buckets. Perhaps a good thing to get it out of the system and start again tomorrow. At times it seems like continuous mourning for my lost love.
     
  4. canary

    canary Registered User

    Feb 25, 2014
    9,855
    Female
    South coast
    Yes, thats exactly what it is.
    (((((((((hugs))))))))))
     
  5. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,243
    East of England
    We went to the cinema this afternoon and it was a mixed bag. He didn’t want to go at all this morning and said I think I’ll stay at home so I gave him an early lunch and then he had a rest and off we went with lots of persuasion. He entered into the film completely, gasping at shocking bits, oohing and aahing at the funny and interesting bits out loud so that I thought that the time may have come to go to dementia friendly shows. I got him back to the car a bit wobbly but he made it, it entertained him for a couple of hours, so not too bad on the whole. I was a bit on tenterhooks because you never know what is going to happen. I must admit that I thought never again at times, keeping him going but I feel that if I don’t try, any semblance of normal life has gone.
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,090
    Kent
    You have a lot of courage @Grahamstown to put yourself through so much additional stress.

    I`m afraid I found it easier to stay at home. At least everything was at hand at home in case of problems.
     
  7. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,243
    East of England
    #187 Grahamstown, Jan 28, 2019
    Last edited: Jan 28, 2019
    Thank you very much, I feel quite useless really because I don’t do enough with him but that’s because he doesn’t want to. I am not sure I can take him again now, he has ‘taken to his bed’ as the saying goes. It is easier to stay at home but soul destroying so I try to battle on in the real world but not for much longer I fear.
     
  8. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,205
    Female
    Dundee
    Your approach is very much like mine was @Grahamstown. I understand how much hard work it is but I also understand why you keep going. You've certainly no reason to feel useless. Wishing you continued strength.
     
  9. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,243
    East of England
    My son is coming to have lunch with him today while I go to see a long standing friend for lunch. During discussions with my son he mentioned a white board to put useful information on, has anyone else used one and how helpful is it compared to a printed message on his notepad which I leave now?
     
  10. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,243
    East of England
    Our son also asked if he was having ongoing memory tests but I don’t think it is worth putting him through the necessary stress. It won’t tell me anything I don’t already know. Does anyone else think that repeating memory tests is worth while for any purpose.
     
  11. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,830
    N Ireland
    Last year, during a visit to the memory clinic, my wife's consultant told me that he didn't put her through a test because it would have just been cruel.

    I suppose there has to come a time when the tests serve little or no purpose. I believe the history related by the carer is of greatest importance once the diagnosis is in place. My wife's consultant still listens to everything I say.
     
  12. AliceA

    AliceA Registered User

    May 27, 2016
    2,231
    I think we are in a Catch 22 situation. It is really hard to accept that now this is our real world.

    We do go out but the cost to general wellbeing is starting to tip more and more into the negative.
    My husband keeps a diary and jots down any events as he always has. It is a habit not just because he wants us to go.
    I sometimes have to remind myself that just because we think he would enjoy it, and sometimes he does and often he steps up to the mark, the aftermath cost is too great, on him but also on me. Just getting him there is a challenge
    Perhaps if I had a car I would be doing what you are trying to do.

    I do try to substitute activities to be more home based. I buy the occasional Netflix card and I buy the occasional DVD. We really enjoyed the Queen as it covered our history.
    I find this works as well as a cinema these days. If he sleeps we can rerun the film. Even see it again when the lack of short term memory steps in.
    I have found that feel good, gentle programmes with a little humour but a meaning work well. Everything is about the mood it generates including good memories. This lasts even if the details of the film do not.
    In the short term it can generate a conversation.

    Someone has offered to take us to the film club, should I accept or not? I probably will but really it is touch and go. It is good to meet people, the seats are uncomfortable, we will not get there early to choose a seat versus talking to ourselves sharing old memories, recliner chairs, the ability to adjust sound or turn it off it it does not appeal. I have now almost decided I will turn the offer down while it is cold and wait for spring.

    It is a really difficult one just as one reaches a stage it shifts again in its own unique way.

    I think you are really brave to try to keep going. I know other people expect me to do this! They do not see the aftermath. Xxx
     
  13. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,243
    East of England
    Thank you @karaokePete and @AliceA for your very helpful discussions. It really does make a difference mulling things over with people who know. I am quite happy with the GP we see who is excellent and understanding being a young probably dementia trained doctor. I don’t see the point of any more tests but I think my son is still in the ‘must do something’ stage whereas I have moved on to being more relaxed, living with it as we do. All your thoughts are very similar to mine Alice and the difference is probably down to us living in town, I think you are in the country aren’t you, and I am still driving although I use the bus. He is getting worse about going on the bus, so I drive if it’s suitable. I am trying just like you @Izzy but already can see how it is all declining anyway. I just press on at a lower level.
     
  14. AliceA

    AliceA Registered User

    May 27, 2016
    2,231
    You are so right the hill is steep, we do need a lower gear. Yes, our situation is similar, village life has its advantages as does town. Buses have been cut in the town too.
    Village was fine while we had local services, it is growing and services were well used. At least we are recognised, and I have noticed a caring attitude when we are out.

    It must be hard when a son is still urging you on, my family think I should get my husband to village events more than I do. Again it is outside pressure that is the problem, I resist but that takes energy I do not have.

    We have a white board, thin plastic on the fridge I find it useful to jot things on. There is a pen by the side.
    I bought a large pin up diary but I do not think it is looked at unless I remind him. The small diary is the constant memory aid. I have clocks everywhere, these indicate night and day, last night he decided to go back to bed having got up in the early hours without prompting. Sometimes he has got up in the early hours just saying it is very dark this morning.
    I cannot think ongoing tests help, we have good bad and indifferent days as far as memory goes. I do not think it brings any more practical help and just stresses us out. It can disable rather than enable once the diagnosis is made.
    It seems just a day at a time is best, essential plans only.
     
  15. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,243
    East of England
    My son has sent several messages full of helpful things to do! He doesn’t usually see his father alone without me and it was a bit of a learning curve. I had a lovely few hours with my friend so it was a great help him going to help. Apparently my husband asked his son if he had any brothers or sisters. That must have been a terrible shock.

    Another thought about memory retesting. I think it’s probably done when no diagnosis was possible and so redone a few months later. We have had a diagnosis and there is simply nothing that can be done further, it’s loving care only for which we carers are not trained. This website is invaluable in that way but still there is very little help until things get desperate.
     
  16. AliceA

    AliceA Registered User

    May 27, 2016
    2,231
    It does seem as if we are on our own, until there is a full on emergency. I had to smile about your son, it must have been a reality shock! I think our youngest is not fully aware, she is never here long enough although she did notice the lack of interest then a question repeated from earlier.
    My husband had memory problems for many years I just filled the gaps, finally symptoms increased and he was fortunate to get a brain scan that and memory test confirmed diagnosis. I feel sorry for those without one, it did get us AA and. Council tax reduction

    We are dealing with a chest infection at home at the moment.
    I have signed up for the course starting mid February on line, just hope I have time and energy.
    We could certainly with a guide about care.

    Hope you have a good night, not disturbed. X
     
  17. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,243
    East of England
    I am awake early and can’t get back to sleep. I have signed up for the course too and hope it will give me more insight into dementia. Unfortunately the more I learn the harder it is to explain it to other people who have a ‘something can be done’ attitude to the disease, as if you are not doing the right thing or have the right information, and that if only you did it would get better. It’s simply not understandable that nothing can be done except palliative sorts of things.

    Sorry to hear about this illness, doubles the worry and hope it is under control.
     
  18. AliceA

    AliceA Registered User

    May 27, 2016
    2,231
    We must have woken at the same time!
    I just looked up the word palliative and it said relieving the symptoms, the pain and the stress of a serious illness.
    We may not win a Nobel prize, but what is more important than that. I feel deeply if we could all do that what a difference we could all make. I would love a bit of that palliative care myself, relief of the symtoms, the pain and the stress.
    Being on here helps, yesterday was good because the chemist unexpectedly delivered the antibiotics and the surgery rang to advise. The fact it happened without me having to chase it was really good.
    I am finding when people say I should do this of that, I am saying more and more IF you have the time it would be great. It has stemmed the tide a bit.

    I hope the antibiotics will crack in again, we have been warned about eventual drug resistance. So every time feels like Russian roulette. I always pray for the best outcome whatever that will be. We never know what that is!
    A while back I suggested that my love went back to bed, it was too early, too cold as the heating was not fully on. He stood looking puzzled but slowly the facts were absorbed and he is safely tucked up again.
    It does take a time to absorb, I am learning to wait silently until this happens.

    I trust your day will be smooth. Xxx
     
  19. kindred

    kindred Registered User

    Apr 8, 2018
    2,140
    I so agree. I try to explain that it's brain damage, catastrophic brain damage like they've had a major head accident. But you have t o have lived with this one to understand. Great to hear from you. warmest, Geraldinexx
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,090
    Kent
    I think this is what we as primary carers set out to do even from diagnosis. Learning to live with it and making life run as smoothly as possible for ourselves and the person we are caring for is a mammoth task and I don`t think those outside the illness have any idea of the adjustments we make.

    I was trying to live with the behaviours five years after diagnosis and many years before and my lovely son knew the theory of dementia but had little idea of the practice until the later stages when I really needed help and let him in more.

    I think this is what we can say of many who think they understand dementia. I can forgive their ignorance. No one should know just how difficult it is unless they are faced with it.

    It`s similar to our lack of understanding about ageing and widowhood. When my grandfather died I had no idea of the life my grandmother had adjusting to her loss. How could I have had? When my father died I had no idea how loneliness or losing skills and strength affected my mother , although I thought I did. It`s as if understanding comes with each age we live through and it seems however compassionate we are we can`t really access that understanding until it is our time.
     

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