1. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    439
    North West
    You know that expression when you say "I'm up to here with it" and place your hand under your chin? Well that's where I am. But I'm either up to here with tears or anger. Anyone who annoys me is likely to be put firmly in their place but any sympathy chokes me up.

    When I was working in education praise was rarely forthcoming so I used to judge myself and made sure I was doing my best and so it is with dealing with OH and his Alzheimer's. I know that the best way to keep him stable is to avoid mistakes. When he makes a mistake he tends to "beat himself up" and then go into sulk mood which continues long after he can remember why he is sulking. So I keep a close eye on most things. Making sure he has wallet, phone, keys etc. I have also developed the skill of working out where he might have left something or what might confuse him. I am sure I come across as controlling to people but I can't stand back and let him get himself into worrying situations.

    So what has got to me this week? Well too many social occasions. I know I shouldn't moan about being asked out but they are becoming so difficult. One instance last week. An old friend arrived at a gathering with others. OH asked what she would like to drink, then started to ask others. I knew he wouldn't be able to remember a drinks order so said something along the lines of just get P's first. Another person said "Oh, let him... I explained it was better if he did one thing at a time. It was a free bar so people could get there own. But it's the implication that I was being controlling, nasty, putting him down, that hurt. When I was just trying to avoid confusion, a table full of unwanted drinks and him facing failure.

    Yesterday he went to golf and managed to lose his glasses, which he wears all the time. No way I will know now what has happened, too much time expired. He thinks it might have been in the bushes or when he took his jumper off. Can't help but feel that if I had been there it wouldn't have happened because I look ahead for these problems. Really expensive glasses, quite new (haven't mentioned this to him). Think we will have to go down cheaper route, perhaps buying two pairs. But he sulked all afternoon, taking to his bed early. Things still very touchy this morning.

    And we have another social occasion this evening, black tie. Many of our friends are reaching significant birthdays and anniversaries and are so generous in their hospitality. They are wonderful friends but they don't know the details of our day to day living, and I don't want to burden anyone. Who wants to go out for the evening and hear all my complaints, so I bottle up, cover up and move on.

    Also refuse to burden my sons although I think they know how difficult things are. I thanked my son for something the other day and he said "You deserve it". Cracked me up.

    I know how the above reads. Depression. Well who wouldn't be? There's no solution is there? I have to carry on carrying on.

    Thanks for reading. Please feel free to add your own moans.
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    9,765
    Merseyside
    Telling others how bad things are will help them understand how much you're struggling.
    Tell them & they can help you preempt situations.
    I think you're doing an amazing job but remember you need support too.
     
  3. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    356
    Only one long moan! I could write a book my lovely!!

    You are doing amazing, and long may it continue. I think a little word with your GP about you maybe in order. Not necessarily depression more like overworking, over stressed and trying to protect others from impact of dementia. There is no shame in asking for a little help from the GP even if it's temporary.

    Your sons sound lovely too, and if I'm honest it would be better if they were aware of how their Dad is as if you were taken ill or they had to look after him for a day they wouldn't be so astonished and more prepared wouldn't they. Who knows they may offer you a day off and have him over for the day?


    Your friends are important to you and I can understand you want to keep a social life while you can, but when I was forty, a while ago now, I decided that if I was invited to anything I really didn't want to go to I wouldn't. Life is too short to go to places and do things to please other people. So on the build up to the day why not tell friends I will try to get to ..... But it depends how husband is on that day. If you don't feel able to go phone and apologise. If they are true friends they will understand.

    As for the glasses can you claim for them on your house insurance maybe? They do cheap glasses in the pound shop if you know his prescription, maybe get a pair to try. My dad has about five pairs in his house and he still loses them.

    Start being kinder to yourself, your friends probably weren't thinking you were bossy, they were just letting him prove he could do it. Maybe if he got it wrong they would learn from this. Also I think your friends need educating as expecting a man with dementia to sort out their drinks list I think is a bit ignorant, as they should be getting his drink rather than putting you both in that position. Sorry don't me to be rude but that's how it seemed to me.

    Take one day at a time, a re assess what venues and friends you involve yourself with, as his golf buddies could have kept an eye on him too. But it's not the end if the world is it, your health is more important.
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,658
    Kent
    Hello rhubarbtree

    It sounds as if you are still trying to live a `normal` life and in my experience `normality` had to give way when dementia entered our lives.

    Not everything had to be sacrificed but I found I did have to consider how my husband reacted in social occasions, what he could manage and what increased his confusion.

    There was no way I could correct or manage confusion in public so I refused invitations for the sake of peace, with my husband and for my own stress levels.

    Dementia is a terribly isolating condition especially among people who either don`t know or don`t understand.

    Friends tend to interfere as you have already experienced. Even family find it hard going but at least they can learn and support.

    What I`ve said may not be acceptable to you but it was the only way I could make my life bearable.
     
  5. 2jays

    2jays Registered User

    Jun 4, 2010
    11,477
    West Midlands
    I can totally understand that feeling of being totally fed up

    One thing that stood out to me, amongst most of what you said, I can relate to almost all your emotional feelings about situations, was about your children.

    I would understand not wanting to burden them if they were very young, but in guessing they are over 16 (?) and your sons comment to you that you deserve it gives me a hint that they are perhaps waiting for you to ask to receive more help? Not wanting to offer incase it upsets you?

    But I'm aware, even if your supportive children do help, they won't necessarily "get it", these emotional feelings you have. We get it. Hoping you get some comfort from us here.


    Sent from my iPhone using Talking Point
     
  6. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,529
    Male
    Bristol
    It took a wee while to convince OH's daughter just how bad her mum could be, but it is worth politely persevering with friends to convince them how bad your OH is and ask them to support you both.
    My nomadic life before meeting Oh means I never made too many friends, but I would have thought true friends would understand. You could even suggest they browse this forum to get some insight.

    All the best to you both.
     
  7. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    937
    Might be worth ringing the golf club just to see if by any chance they have been handed in? Stranger things have happened.
     
  8. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    439
    North West
    There, I knew you would cheer me up. Also after posting we went for a quick walk. Blew the cobwebs away and initiated some small talk. Don't disagree with anything anyone has said.

    My sons do know the situation with their Dad. We see them often and usually have one holiday a year with them and the grandchildren. My regret is that I can't have more time with the grandchildren but it is too much for OH. My sons are much closer to me probably because I was the one taking the most interest in their education etc. OH has always been a bit selfish, cars, golf and golf friends came first. They are not, and never have been on the same wave length. You can't change things because someone has Alzheimer's. Sounds harsh but that's the way it is.

    Hope it didn't come across that I was annoyed with friends. They are all very kind to OH, perhaps too kind. They haven't got my foresight though so every outing without me seems to have an incident (and some with me - toilets with two exits last week!)

    Normality. I know what you mean. We really are at a tipping point. OH is very amiable, if he gets upset when out and about it will only show in quietness and I can usually recognise the signs and make a hasty retreat. He is very clubbable and likes being with people so I wouldn't want to stop going out altogether.

    The glasses. Well, if there is one thing I've learned from this awful disease, is not to look back or look for anything. They might turn up in the most unexpected place. Whose to say he even went out in them. He is now wearing a pair he purchased from one of those retail chains when he was first showing signs of Alzheimer's. At that time he would rush into things. I remember how annoyed I was with him and the shop. They sit high on his nose, the lenses are too small and they are reactalight. The pair he lost were carefully chosen and very expensive. oh well....

    Right, light lunch, little ZZZZ then jump into high heels for evening out.
     
  9. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Why dont you ask your sins to come up with a plan to regularly spend a day with their dad while you get some time with the grandchildren. If you have daughter in laws then they would also get some me time too. It would be a win-win all round. Every few weeks should be possible especially if sons take turns each. Its making family memories and enjoying time together. Ask! They might surprise you.
     
  10. Caz60

    Caz60 Registered User

    Jul 24, 2014
    251
    Lancashire
    So sorry if I'm stating the obvious but are they covered on any house or bank insurance .Maybe it's worth checking?
    Otherwise I know how you feel when you think up front I have to clean my hubbys glasses quite a few times in a day as he touches the glass all day long .xxxxx
     
  11. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    First of all, Talking Point is the Musical of Moans, or the Theatre of Rants. :) This is the most wonderful place to get it all off your chest, in the sure and certain knowledge that there will be at least one person, who has experienced the same things as yourself, and there will be dozens who can sympathise and offer advice.

    I can sympathise with you immensely, and understand your "moan". In the early days, I too tried to be stoic and carry on, but after several "problems" when socialising, I told people about John's illness, in advance, so that they could be prepared. And I know many felt uncomfortable, as if it were contagious!

    As the years went by, many of the friends drifted away, and so did the invitations but quite honestly, it was far easier on both of us, and certainly on me, not worrying about what John would say, or do, in unfamiliar surroundings. The true friends stayed in touch, and were brilliant, phoning to check it was convenient for me to talk, or for them to visit, meeting up with me for a coffee whilst John was at his Day Centre etc.

    It's a long hard road that carers of someone with AD travel, and when you're eventually, perhaps, having to deal with Social Services, Day Centres, Incontinence Services, whilst exhausted, you learn which battles to fight.

    Personally I was too tired and on edge, to attend many social functions, but if this is the life you're used to, it's hard to adjust. Some people on here talk about going on holidays that involve long flights. With us, a trip to the Garden Centre was stressful enough!

    Please carry on posting whenever you need to get it all off your chest. And to cheer you up, a huge cyber bouquet, box of choccies, and a bottle of your favourite tipple are winging their way to you. :D xxx
     
  12. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    439
    North West
    Thanks for your understanding Scarlett. I appreciate things will change and not for the better. Our evening out was delightful. Lovely food and company. A bit of a head this morning so we are working it off in the garden. Well, he is, and I will be going out there soon...

    One truly lovely positive happened. At the reception before dinner I was standing talking to some friends (drinking champagne). OH somewhere else but then he appeared with a glass of iced water for me. Don't know where or why he got it but he hasn't been as considerate as that for ages. A little chink. Then he woke up this morning in a sulk claiming I had shouted at him during the night. Cheered up now, with sun and a task. What a roundabout.

    Glasses not in club house or club shop. Friends he was playing with all have theories as to what happened. Think they feel a little guilty for letting it happen.

    Garden calling. Have the best day your can, everyone.
     

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