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.

My Memory Pot and other moments.

Discussion in 'I have a partner with dementia' started by Agzy, May 26, 2019.

  1. Agzy

    Agzy Registered User

    Nov 16, 2016
    832
    Moreton, Wirral. UK.
    It was suggested on here the other day that I should start my own thread and I have been trying to come up with a title and here it is. It came about from a birthday gift from my daughter of a plastic pot full of slips of paper upon which she had jotted down memories of her youth and my role in it and so I named it my Memory Pot. I have also been keeping a journal, as many do, and mine is now 4 years in the telling since Pauline’s diagnosis with Alzheimer’s disease and that too is a sort of Memory Pot, although lots are not pleasant to read back as I have just found out. Some bits however are funny and even help me see how I have changed during this journey. Reading this paragraph back seems like a Ureeka moment somehow and so it begins my own thread.

    Monday 17th July 2017

    It must be awful to have this disease and knowing what's coming and when confusions and mix ups happen and preparing a meal goes all wrong and obvious things can't be remembered at all, which makes me feel worse for being so short tempered and helpless. I know she tries her best and can't help herself and somehow I have to learn to cope with it all but genuinely I can't see how it can be taught never mind learned. I keep thinking it's about respite but to be honest it's not just a real rest I need but to be able to return from it and suddenly be able to deal with it all, which I know is an impossibility.
    Again I've realised I am using this journal to have conversations with myself as I have no one else and feeling sorry for myself. When I began this journal it started out as a dispassionate recording of how the condition develops never dreaming how it would really affect both our lives. An example is how I quickly and confidently made changes in the house, got the PoA’s in to place and our wills made. Somehow I missed the point that this is primarily a mental issue and physical challenges are easy to sort as against the mood swings, forgetfulness and lack of affection and even dealing with the public when something embarrassing happens. Well that's my moans over for today and I would say sorry but who to?
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,125
    Kent
    A great title @Agzy

    Perhaps this is why some people can be forgiven for not appreciating the devastating effect of dementia unless they have lived with it.
     
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,237
    Female
    Dundee
    What a lovely and thoughtful gift @Agzy - and a perfect name for your thread.

    I hope you find this a good place to come to for sharing your thoughts and having conversations. It's almost 3 years since my husband died and I created a new thread after his death. I still find it a comfortable and safe place to go.
     
  4. Agzy

    Agzy Registered User

    Nov 16, 2016
    832
    Moreton, Wirral. UK.
    Thank you, GrannyG, looking back it has been the total unpredictability of daily life that has been one of the biggest shocks.
     
  5. Agzy

    Agzy Registered User

    Nov 16, 2016
    832
    Moreton, Wirral. UK.
    Thank you Izzy, it is amazing how TP has become a friend and confidante to me over the years.
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,125
    Kent
    I can identify with that. At one time I started to read through my own long running Thread but a] found it too painful and b] don`t know how I did it.
     
  7. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,833
    Nottinghamshire
    I started my own thread in February last year and it ran until Dad died in December. I found it useful as a place to vent my frustrations, have a giggle with my TP friends and to keep track of dad's decline which was useful when dealing with the professionals whose input became invaluable.

    I look forward to reading yours @Agzy and hope it brings you some comfort.
     
  8. Agzy

    Agzy Registered User

    Nov 16, 2016
    832
    Moreton, Wirral. UK.
    Sunday night is my karaoke night and last night was no exception and, as usual, I left Pauline (who is still fairly independent and can cope in most situations) sitting watch her TV programmes and recorded ‘classic’ oldies. No phone call and no panic except when I arrived home just after 10.00 pm to find she had somehow lost the usual TV programmes. It took a while to sort matters out then all was well and she was reassured that planned Recordings would still go ahead. Haven’t figured out how she did it nor indeed how I resolved it but at least no melt down this time. Technology hey!
     
  9. Agzy

    Agzy Registered User

    Nov 16, 2016
    832
    Moreton, Wirral. UK.
    Today a poem penned in the early hours.

    Days.

    Slow days and low days,
    Go with the flow days,
    Days that drag, days that fly,
    Days watching life pass us by.

    Winter days, summer days,
    Stay in or go out days,
    Days for the doing,
    Days for wooing.

    Good days, bad days,
    Happy and sad days,
    Days for smiling,
    Days for beguiling.

    Sunny days, funny days,
    Cheerful and chummy days,
    Days we share with creeping dementia,
    Days of new challenges, new adventure.

    Amusing days, confusing days,
    Hard days and dark days,
    Days of hurt, days of pain,
    Days of bewilderment again and again.

    Long days, prolonged days,
    Mournful days awful days,
    Days of swearing, days of caring,
    Days of tempers often flaring.

    Withdrawn days forlorn days,
    Want to be alone days,
    Days dragging on, days of no fun,
    Days like today, must leave must run.

    Harry Pleavin 2019.
     
  10. Agzy

    Agzy Registered User

    Nov 16, 2016
    832
    Moreton, Wirral. UK.
    Back in September las t year a number of adverts came through out letterbox as they do almost every day but before the usual quick turnaround to the recycling bin Pauline started reading one. It was offering 2 for 1 cruises from liverpool in 2019. Given that she had firmly ruled out all holidays from caravanning to fly stay holidays this was odd. Anyway she suddenly discarded that she wanted to me come with her on a cruise to Iceland and Faro Isles. I booked it expecting to lose my deposit when she changed her mind but, to everyone’s surprise she keeps talking about it and seems to be really keen which is just as well as we sail in just 6 weeks! Question is what do I need to look out for or be aware of when we go. She has said she will stay on the ship and I can go off on excursions if I like but unsure. Has anyone had anything like this happen?
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,125
    Kent
    Hello @Agzy

    I`m not sure how far Pauline is into her dementia so it`s difficult to say.

    I took my husband to India one year before diagnosis and one year after diagnosis. The second time, he was quite confused and disorientated and I would not have left him alone.

    However I know others on the forum have gone on holidays, including cruises, quite successfully. Whether or not they left their people with dementia behind while they went on excursions, I don`t know.

    I hope you get some more constructive observations then mine and have a wonderful time when you go.
     
  12. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,412
    Female
    England
    We did a cruise when my husband had dementia and my brother and his wife joined us and it was fine.

    Two years later we did another one, just the two of us with my husband really looking forward to it. It was not a holiday at all. Every time he wandered off I wandered after him, going ashore was a nightmare, I was afraid to let him out of my sight. Meal times were a problem and the confines of a cabin bought out his anxiety to a level never experienced before.

    Once we were home it took him several weeks to get back into his usual weekly routine and settle down. It was an experience never to be repeated. In my case I would not have left him to his own devices on board a large ship.

    I’m sure once you are aboard @Agzy you will be able to judge how much freedom to give Pauline. Our ships were like floating towns and not easy to keep what was where in your mind.

    Your cruise sounds a fantastic one and I hope you do manage it, with lots of photos posted please.
     
  13. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,470
    @Agzy We went on a cruise with dad in 2014. It was wonderful we did some ports in Norway and then went on to Svalbard in the arctic circle. Dad loved it and he even paid for my husband and myself because he wanted to go.

    Basically we were dad's companions and spent the whole time with him (this was pre diagnosis but dementia was obvious) The only problem was that dad's cabin was on a different deck to ours and we were up at the crack of dawn every day so that we could get to dad's cabin before he came looking for us, not a problem for you as you are sharing a cabin with your wife. Dad had been on this ship before with mum many times so knew it like the back of his hand but all the same one of us was with him at all times.

    As for shore excursions dad still wanted to go so we mostly just went ashore for a very short walk and found a cafe for a coffee, once we found a pub and had a beer but norweigen prices stopped us having a second. We would have liked to have explored more but it was dad's holiday so another time maybe.

    I was glad we went and you should definitely go but just take it one day at a time and you will be able to judge whether you can go ashore on your own or not.

    Our ship was one of the smaller one's and the fact that dad had been on it many times made it easier for him and us.
     
  14. Agzy

    Agzy Registered User

    Nov 16, 2016
    832
    Moreton, Wirral. UK.
    Thank you guys, Pauline is probably at Stage3/4 so not too bad and as I say really looking forward to the cruise, which is on a small ship, The Magellan, a ship recommended to us. I have upgraded to an Ocean View room so that she doesn't get claustrophobic and will bear all your words in Mind and feeling a little less nervous knowing others seem to have done it before but each can be so different with this pestilence.
     
  15. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Love it Agzy, I liked your poem 'Days'. Glad your off on a cruise too, wish I was so lucky :)
     
  16. nitram

    nitram Registered User

    Apr 6, 2011
    18,830
    Male
    North Manchester
    @Izzy is currently aboard
    https://www.cruisemapper.com/?imo=8217881#
    so far she has not posted any complaints!
     
  17. Agzy

    Agzy Registered User

    Nov 16, 2016
    832
    Moreton, Wirral. UK.
  18. Agzy

    Agzy Registered User

    Nov 16, 2016
    832
    Moreton, Wirral. UK.
    Thank you and yes, every day my blessings outnumber the curses so life is good for me.
     
  19. Agzy

    Agzy Registered User

    Nov 16, 2016
    832
    Moreton, Wirral. UK.
    Yesterday just after a shower of rain I went out to put some stuff in the car and, after closing the boot and walking round to the front I had a hell of a shock, Paulines foot, with mule slipper alongside, could be seen lying on the doorstep in front of the car! She had followed me out to help (?) and, as she either walks down on heels of slippers or wears mules, she had slipped and fallen. As I am hard of hearing even with hearing aids in place I never heard her at all and, had I say, walked away from the car and gone for a walk, she would have been left there. This is one of my main worries as, although I have special doorbells, smoke alarms and telephones for the hard of hearing, there isn’t anything I know of that would help if she was calling for help anywhere out of my sight.
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,125
    Kent
    Good morning @Agzy

    It seems I have a similar hearing loss to you. My husband was given a sensor which could be worn as a bracelet or clipped to his waistband and was connected to my care line. If he fell it would trigger the alarm.

    It didn`t work for us because he `found` it and played with it but is there the slimmest chance it would work for your wife.
     

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