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I miss normal conversation

Discussion in 'I care for a person with dementia' started by jojop, Nov 11, 2015.

  1. jojop

    jojop Registered User

    Nov 9, 2013
    66
    SE London
    Hello, I've been a member of TP for a while and often read posts, the info and advice given out has helped me loads. This is my first post, for 2 1/2 years I have been looking after mum, 86 years old with mixed dementia. I also look after my sister who has autism. I get 9 hours sitting service during the week usually spent shopping for home, try to take my sister out and have 1 hour Pilates a week - the only time I truly switch off. We have some good days and we have the bad too, like all who care for loved ones and we have nights without any sleep.

    Mum is on a pureed diet, I tried the ready made meals for a while but she did not enjoy them so I bought some moulds and now prepare all her food, lots of flavours etc and she eats it all and has put on weight. All I seem to do is cook, clean wash and iron and I know I am probably better off than most but I feel so fed up. I'm not good at talking about how I feel at the best of times. I miss talking about everyday normal things, a TV programme I might have seen, music, cooking ideas to try other things for mum.

    I feel a fraud for even writing this, and guilty for being so fed up most of the time I think I cope well but just sometimes.....

    Sorry for the long post and thank you if you managed to get this far, maybe I need to make more use of TP.
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,860
    Female
    Scotland
    You are absolutely justified in missing those things which make life enjoyable. The thing is to work out how to get some of that back preferably every day. Does your sister go to some type of care or are you totally responsible for her and your Mum 24 hours a day?

    Could you order shopping online to be delivered so you use your time for yourself? I order as much as possible to make the most of what little free time I have. Are there any volunteer groups in your area who would sit with your Mum for an hour or two. Are there any Alz Soc groups you could take her to where you would get a chance to talk to others?

    Someone from your area will I am sure come on here with better info for you. Good wishes.
     
  3. jojop

    jojop Registered User

    Nov 9, 2013
    66
    SE London
    Hi Marion, thank you for your reply.

    My sister used to attend a group but stopped going and lost her place. She is very possessive of mum as it used to be just the 2 of them until I moved in a couple of years ago. I helped mum with her and took her out, on holiday etc now when she has one of her wobbles she resents me being here!

    It is just me 24/7, I sometimes get shopping delivered that helps but there is not much around here in the time I get off. Friends all seem to fall by the wayside too.
     
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    Gosh Jo you do an amazing amount but no wonder you feel isolated. I also got to that stage when I had lost friends and just had noone to have a proper conversation with so I do understand.

    I know you say that friends have fallen by the wayside but in the end to keep my sanity i made an effort once every two weeks to see a friend - I had one friend who came to see me and have lunch and we managed to snatch conversations with each other during the day which made me feel human again and my mum felt she was being involved too so she was happy just to be there!! Do you have someone that you knew really well who you could explain the situation to and invite them round?

    Can you get your sister back to the group? Will your carers organisation help you find a sitter even once every couple of weeks to get out to a local group. The carers cafe was my lifeline mainly because i met others who did not need me to explain things to them.

    Can you take your mum to a dementia cafe - i know it isn't time to yourself but you would meet other local carers and it gives you more of an idea of what is available to you? or Singing for the Brain Group?

    I'm sure you have thought of lots of this but you must be exhausted and it is all too easy to give over your life without taking back anything for yourself and you need desperately to recharge

    Thinking of you xx
     
  5. hvml

    hvml Registered User

    Oct 10, 2015
    300
    North Cornwall
    Hi jojo.

    I know what you mean about missing normal conversation. This role is so all consuming that you can sometimes only focus on the absolute basics - eating and sleeping - when possible.

    I have a good friend who I call a couple of times a month, I see my OH once a month for a weekend and watch TV with my brother and his partner in the evenings. Apart from that, it's me and Dad.

    I'd love to know more about you and chat on here. What sort of things do you cook for your mum and sister?

    Heidi x
     
  6. jojop

    jojop Registered User

    Nov 9, 2013
    66
    SE London
    Hi Fizzie, thanks for responding. I would speak with a friend once a week on phone but now seems to be every couple of weeks. A few of us used to meet for lunch regularly but due to their work commitments this has stopped.
    I try every week to get sister to group, all to no avail shame really as she should have an outlet too.
    Mum will rarely go out of the door, unless she trying to 'escape'/go home, when the weather is mild I try and coax her out to look at flowers or if neighbours outside I encourage her to come say hello. Otherwise she stays in.

    I'm thankful for my pilates class which I recently joined that helps.
     
  7. jojop

    jojop Registered User

    Nov 9, 2013
    66
    SE London
    Hi Heidi, that must be tough only seeing OH once month. Dementia certainly takes over life.

    Since buying the food molds I cook and puree carrots, broccoli, peas, chicken, pork, lamb, cod, salmon and smoked haddock for mum. I make batches and freeze them. I also make a batch of mashed potato and pipe rosette shapes and freeze them too. Definitely need to find an alternative to potatoes though!
    Sister and I eat as similar to mum as we can, albeit my sis does not like fish but will eat fishcakes/fishfingers !?

    How long have you been caring for your dad?
     
  8. hvml

    hvml Registered User

    Oct 10, 2015
    300
    North Cornwall
    I moved from London to Cornwall in 2012 and have been here ever since then. Up and down once a month, with the odd week here and there.

    Dad has middle stage vascular dementia, poor mobility following a stroke, but does his best around the house.
     
  9. hvml

    hvml Registered User

    Oct 10, 2015
    300
    North Cornwall
    Your meals sound lovely and tasty and nutritious. Yum I do the cooking for the household too. Our meals tend to rotate on a weekly basis, but I have been getting more into cooking and am trying to branch out a bit. Not the easiest job with a brother who is not keen on vegetables and a wheat intolerant sil!

    It's not been easy to be away from my OH, but he has been wonderful and supportive. We really enjoy the little time we have together. X
     
  10. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,783
    Salford
    I sit there and watch Gogglebox on the TV sometime (guilty secret out) just so I can see other people watching TV and interacting with each other instead of watching TV with my wife who understands nothing of what's going on other than "they're talking about me" syndrome.
    24/7 is tough no two ways about it just with one person to deal with, your situation where you have two must be a nightmare.
    Have a medal jojop and keep posting.
    K
     
  11. jojop

    jojop Registered User

    Nov 9, 2013
    66
    SE London
    I tend to rotate on a weekly basis too, I mainly use the steamer for most things it's easier unless cooking Sunday roast. I need to experiment more, my sis eats pretty much anything (apart from fish)!. How do you manage with cooking for brother?

    It's lovely you have support from OH, makes the time together that much more special.
    Mum is moderate to severe mobility not bad but getting more unsteady on hers legs.
     
  12. jojop

    jojop Registered User

    Nov 9, 2013
    66
    SE London
    I chatted to one of the ladies from goggles on the bus recently, she was load and funny.
    Mum rarely remembers me as her daughter but strangely knows my sister to be her daughter! The toughest part is sis not understanding mum's illness and to some extent vice versa. Neither are very good at finding the right words, mum a lot of time and sis struggles with words to explain how she feeling. And when they both get frustrated...........I make a cup of tea

    Sorry to hear about your wife, must be tough for you
     
  13. hvml

    hvml Registered User

    Oct 10, 2015
    300
    North Cornwall
    Morning jojo. Hope you had a restful night
    In terms of cooking for my brother, I just tend to stick to veggies that he will eat, which is largely peas, carrots, broccoli and a bit of spinach. All boiled to within an inch or their life! With a roast, I do sprouts as well and just skip his plate. For myself, when they are at work, I make sure I have a big salad with as much goodness as I can, just to bump up the 5 a day. Dad has some issues with night time incontinence, so I do his main meal at lunch time and that has helped a lot. As you say, loads of time cooking. My best thing at the moment is that I have learned how to make millionaire's shortbread, so cut it up small and have a piece at coffee time after the hoovering. Do you do any baking? Xx
     
  14. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    Whenever we go to dad's, he always has something recorded on the telly that he wants to show us and we have to sit there and watch, and make the right noises! It occurred to me recently that this must be because when he does get the chance to watch a programme, he now has no-one who he can just turn to and share a comment with, or a laugh, or just a look, because of course mam no longer understands the telly. This is the sort of interaction that we all take for granted but must be much missed when it's no longer possible. Just a little thing, but really important, I feel.

    Welcome to TP, Jojop. How do you find your steamer? Is it easy to use? I'm wondering whether my hubby, who enjoys cooking, would like one. Any tips?!
     
  15. jojop

    jojop Registered User

    Nov 9, 2013
    66
    SE London
    Morning Heidi, a peaceful night l last night hope yours was too?

    I love salad and would eat it every day. I wish I could get mum to have hear main meal at lunchtime but she won't, so usually try and eat 5ish. She has some incontinence issues and tries to hide it.

    Millionaires shortbread sounds yummy, I would love to bake mum always made cakes, she spent most of her working life in catering. Her best was Clootie Dumpling (Scottish recipe, she from Scotland), it took hours to cook steamed in a muslin cloth. Came out shaped like a rugby ball but 3 times size! Delicious with custard.
    If I baked it would be unfair on mum as she couldn't eat it, I have to be careful what I keep in fridge as she will sometimes attempt to eat what might be there. Xx
     
  16. jojop

    jojop Registered User

    Nov 9, 2013
    66
    SE London
    Hi Collegegirl, totally agree with the interaction thing, mum enjoys her programmes and struggles to understand but will watch tv, one of her favourites is Columbo, (not mine) we watch on a Saturday then they are repeated on a Sunday we watch again. She loves nice animal type programmes and cowboys and Indians too!
    I would not be without my steamer, meat in bottom tier with seasoning and veg on top tier, 20/30 mins later all cooked and minimum washing up too. I pretty much use mine every day.
     
  17. hvml

    hvml Registered User

    Oct 10, 2015
    300
    North Cornwall
    I did have a peaceful night, yes thanks. That makes two in a row. I hardly know myself. The peace didn't last long though, coz when I went in to wake Dad up, he was on the floor. He had just slipped off the bed and not hurt himself, the problem is getting him up again. My SIL and I heaved him up with a lifting belt and he was fine. As he was a bit disrupted, he was nodding off after breakfast, so I have decided to let him sleep for a while. Once he is asleep, it's nigh
     
  18. hvml

    hvml Registered User

    Oct 10, 2015
    300
    North Cornwall
    (oops) nigh on impossible to wake him up, so I will wait till lunch time, then keep him up this afternoon. It means sitting and constantly coughing or nagging, but I don't want to go back to disruptive nights!

    Re the baking, It's a new thing for me.I have got myself the equipment together and been following recipes. Great sense of achievement. It's a shame for you and your Mum that you can't do it.Maybe healthier for you though. I try to keep it to a minimum, as I went on a diet and lost 4 1/2 stone last year! Your Mum's clootie dumpling sounds amazing 3 times the size of a rugby ball is my kind of cake! My Mum used to make things that steamed for hours too. They were delicious.

    I'm so glad that you are enthusiastic about the steamer.I have got one for my OH and am looking forward to trying it out.

    Dad sleeping has the advantage that I can catch up on a bit of Emmerdale. My guilty pleasure. As kevinl says about gogglebox, it's like a window into 'normal' life in some ways, people interacting with each other. I am lucky that Dad is ok if I pop out for 10 minutes here and there.We live in a tiny village with a shop and a bakery, so this morning I went to get supplies and had a brief chat at the same time.

    Xx
     
  19. jojop

    jojop Registered User

    Nov 9, 2013
    66
    SE London
    Sorry to hear your dad had a fall, it's such a worry. Mum fell last year luckily it was only bruised ribs but really painful for her.
    Well done on the diet, sounds like you did really well, watch the millionaires shortbread though!
    I watch Emmerdale, sometimes have to catch up when no interruptions instead of having to explain who or what is going on.
    Talking to you about cooking has given me some thoughts - thank you. I'm going to buy some small xmas puds and practise pureeing them, just not sure what liquid to use? Perhaps a little watered down brandy?
    Also want to try mince pies, could make pastry, cook but then again need some liquid to puree before putting into a silicone mold. Likewise with the mincemeat. Least if I manage that mum can enjoy and will seem like she having same as us. Lots to think about and me thinks loads of practising required.
    Hope you enjoy using the steamer, you'll have to let me know how you get on. Xx
     
  20. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    The clootie dumpling sounds lovely! Thanks for the info on the steamer, I'll definitely consider this for hubby. He loves his veg crisp and firm, so it might be just the thing! I really like the sound of it.
     

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