A lifelong friend and me

Discussion in 'I care for a person with dementia' started by Palerider, May 19, 2019.

  1. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    Hi @Sarasa yes a minefield. I think I was right to get help, and its hard to know when and where to draw the line when we see someone deteriorating and loosing what we outwardly see as their abilities to cope alone. I think sometimes we have to go against peoples wishes, when we have a moral obligation as family/friends, to try and find workable solutions. But I will still be here with her and I will do the best I can as @canary says without making promises. The carers will visit once a day at lunch time, they won't enter unless mum invites them in -this seems to working better so its a solution for now.

    I think it does raise some interesting questions, that as yet have been difficult to answer when we arrive at making decisions about capacity, wishes, feelings and best interests. It also highlights how important it is for people to communicate their wishes openly and honestly, even if they may not be welcomed by kith n kin; whether they have a life changing condition or not. The lesson here is that ultimately people need to make their wishes known and explain what they expect if others try to intervene -easier said than done I know, but it would save a lot of worry and stress, just knowing that the situation is as they wanted it. However, even then people can and do change their minds.

    I am going to look after me more now, the last year has seen me ran ragged and my health has suffered. Mum is blissfully ignorant of the future she faces, so I will leave her to potter happily so long as she is safe.

    Its my MSc graduation in two weeks time, so I am going to make the most of the day and go for a meal with my colleagues in the evening -the first time I have socilaised in two years.
     
  2. canary

    canary Registered User

    Feb 25, 2014
    10,185
    Female
    South coast
    Congratulations on your MSc :D
    Have a lovely day
     
  3. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    Today mum and I have sat down to our eveing meal and mum said something that made me quite tearful. I got up and walked away and cried having turned away from her, making out I was getting the rest of the meal ready. She looked at me and said 'your the nicest person I know and I am glad you are here' after which she asked me who I was despite getting my name right.

    When I was at primary school I read The Hobbit and then LOR, I immediately became a big fan of Tolkien. The only thing I could think of is a Gandalf qoute "I will not say: do not weep; for not all tears are an evil.”
     
  4. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    #224 Palerider, Jul 2, 2019
    Last edited: Jul 2, 2019
    Today I was up at 05:30, earlier than the usual 06:15. This week I'm on long days, so I have four days off.

    I'm finding it very difficult to find something for myself to do having said I will now take a step back. I'm sat twiddling my thumbs thinking about how I can fill the day with something in it for me as well as mum.

    I have began to realise that its been so long since I have spent time with friends that they don't even bother to ask me to join them anymore. This I have noticed more now since I have made the decision to start re-buildng my life. Two very good friends are off to Poland next week, they didn't ask me to go because they said they knew my answer would be 'I can't' -they were right of course, at the time I would of just thought about mum and not myself. Maybe I need to move on and make new friends, I seem to have become an outsider now, despite having tried to rekindle friendships in the last week. Where to start??
     
  5. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,484
    @Palerider I think that probably happens a lot to us carers. I know I have lost contact with friends. My best friend died almost a year ago after a long illness and that made me very sad.

    The U3A is a good place if you have one local. I joined because they have a hiking trip and I used to go a lot but only once this year. I like it because you get to talk to lots of people and everyone was friendly and nice but they are not really friends although I do count a couple of them as friends now. I also make an effort to meet some old work friends once a month, there are 4 of us but not all of us turn up every month but there is usually at least 3 of us. I also make a point of keeping in touch with another old friend and try to see her one in a while, this is not always easy as her husband has been ill for a while now.

    I have a holiday planned for the end of the month, actually it is a proper adventure and I love adventures. It has been planned for 2 years now. Do I go, I don't know. I am acting as though I am going and getting things ready. Everyone say's that I should go because I have not had a proper holiday for 2 years and it will do me good and it would. The problem is that dad is ill. At the moment he is stable but that could change at any time and if he is ill while I am away then I cannot get back quickly and to me that is a very big problem.

    I have looked after him so well throughout his cancer that I find it hard to leave him in the care of anyone else. What if he has a fall or another infection and ends up in hospital and I am not there.

    You see, I am talking myself out of it again while at the same time preparing things in my head.

    I am quite sure that you understand what I mean. I feel that it is a huge step for me to take and will probably cause me more stress than if I just stayed home with dad.
     
  6. AliceA

    AliceA Registered User

    May 27, 2016
    2,340
    Congratulations from me too. I found when I had a free morning after years I did not know what to do with it and just fritter the hours away. Mind that is good too.
    The U3a is a great idea, most have walking groups, you could start a cycling one perhaps eventually. The subjects are as wide as people interests. Give a bit of space for perhance too.
    Keep in touch
    Perhaps when you get away and knowing you cannot get back, you will accept and relax. Two weeks will fly past. So take a chance. I know exactly how you feel but in the long run it could give you strength to carry on. Xxx
     
  7. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    I've had a nightmare day with mum, not a bad thing but somehow today the old spark was there. Tonight she actually cooked T, the first time in ....er....12 months. I was stunned at her ability and determination to do it with a little help from me. She cooked M&S cod, chips and yes wait for it...PEAS....after me saying in this thread if I see peas again I'll scream. To be fair I enjoyed it, though somehow she had reduced the garden peas to mush -I was glad as I had an excuse not to eat them. Her fish and chips though were good and she sat quite proud of herself, how could I not make her feel good, even though this is a one off glitch in the scheme of things. I have to confess the items to be washed and dried did double, but I don't care mum enjoyed being a cook again even if short lived.
     
  8. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    Hi Alice

    I have read your other posts on your experiences in the care home with hubby. I hope it has helped you find a way forward. You do need to slow down though, you can't be all things to all people no matter how kind as a person you may be. Let us know your plans, always interested :)

    Simon aka pale
     
  9. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    Yes I think many of us loose contact with friends, I never intended that to happen but it has. My closest bestest friend is R who lives in South Wales. We shared a house together and worked together in London for many years. These days we are lucky if we see each other once a year. We were so close as platonic friends we travelled everywhere together mostly mainland Greece. R keeps on asking me to move to South Wales so we can pick-up where we parted in 2008. R went out to Dubai and asked me to go too, but by that time dads cancer had got worse and I kind of knew about mums problems, plus I couldn't work in the Middle East morally for me it was wrong as a gay man. I had secured a job in NZ by the time I came home, but when I got home things became very obvious and so I stayed in the UK. having realised I couldn't be flying round the other side of the world every few weeks, plus mum needed me to be there more than ever.

    Just before Christmas last year R had a crisis and MH breakdown herself and is in recovery, I can't place my weary weight on her as she is ( even though we are best friends), it wouldn't be right or fair. She has said she wants to come over and stay, but I have said no. She needs to gather her own self before coming here as things are now -she will only worry about me and there is no need - I am facing the demon I need to face as best I can and besides two people with MH problems can't be good (so I think in my own world). R is the only person to see beyond the dementia and the negatives in all of this, she has consistently talked to me and told me how I am a good son and that mum even though she has dementia is amazing, she is the only person that doesn't repeat the rhetoric of everyone else, she isn't scared by it (as Jaded'n'Faded mentioned in another thread on here).

    With R out of the picture where does that leave me? Everyone else has stopped waiting for me to return to 'normal'. Don't get me wrong these are good people, but they also have lives to live and unlike me families to go to. My dad always use to say "if you stand still long enough, time will pass you by", -on reflection I think he may have been right (we disagreed about most things)

    Two years ago I went back to London with my work colleagues (3 of whom have become close friends) we went to a conference and turned it into a two day stay. Within 1 hour of being in the pub my anxiety was through the roof worrying about mum. A close colleague and close friend E noticed that I couldn't stop pacing and took me outside for some air (a ciggy) -she was so good on how she made me realise that I was conistently anxious in the bar, without making me feel bad. She had clocked that my anxiety was about leaving mum alone for two days. The only time I relaxed was on the train home -sadly (I had booked 1st class tickets, so there was some value for money at least)

    Yes Duggies-girl I know full well what you mean. Booking a holiday at the moment is a step too far, but I do need to let go and have a break, but more importantly I need to find a group where if they can't be friends at least we can mix, chat and exchange. I have always wanted to do the Art Foundation Course, if I can fit this in with work maybe this might be a start to a new social life - I love art and the rest I can go with
    .
     
  10. canary

    canary Registered User

    Feb 25, 2014
    10,185
    Female
    South coast
    An art foundation course sounds wonderful. Even if you cant fit it in now, its good to have plans/dreams for the future.
     
  11. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    Canary -its a possibility, my manager is always asking how can she retain me - even if I miss one week and go the next worth a try ;)
     
  12. canary

    canary Registered User

    Feb 25, 2014
    10,185
    Female
    South coast
    Youve got a good manager there, Simon.
     
  13. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    Yes I've been very lucky, she's been very supportive of me with mum. I did say I, may have to leave and find work closer to home so she was quick to try and juggle my working hours.
     
  14. canary

    canary Registered User

    Feb 25, 2014
    10,185
    Female
    South coast
    She obviously appreciates your work :)
     
  15. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    Wimbledon is now in full swing and mum is glued to the TV watching it. She will be occupied now for the next week or so. Thank God for small mercies, I know she'll be ok while it lasts.

    usual grind getting ready for work tomorrow -two long days. I just wish we had a robot to iron shirts as mum now refuses and I hate ironing
     
  16. AliceA

    AliceA Registered User

    May 27, 2016
    2,340
    Some iron to earn money so you could check. Some non iron materials work if washing is straight out washer and hung. X
     
  17. canary

    canary Registered User

    Feb 25, 2014
    10,185
    Female
    South coast
    I confess that I never do any ironing now - but then, Im not working now either.
    We frequently get fliers through the door from a firm advertising that they take in washing to be washed, dried and ironed, but I dont know how expensive it would be. You might find someone by asking around.
     
  18. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,484
    No, I don't iron anymore or even clean much. Fed up with it, I have done it all for long enough already and I don't want to do it anymore.
     
  19. Palerider

    Palerider Registered User

    Aug 9, 2015
    520
    Male
    North West
    Thanks Alice, Canary and Duggies-girl -I have identified a place several miles away for shirts, but they don't collect/deliver this far out -the joy of rural living!.

    This week work has put everything into perspective and made me re-think how challenging life can be for all of us. I met a 37 year old guy with a young family who had metastatic cancer, this time I somehow thought about it more than usual and so spent the rest of the day feelng fed-up with mother nature and how cruel she can be. On the same day I met a lovely chap the same age as me in the end stages of cancer, who seemed to show no fear of what was coming, just acceptance. A reminder of how powerless we are to challenge some of the things that can happen to us in life. This made me think about loss and how in some way we all lose someone, not always physically. I wonder sometimes if life would have been easier if mum had died from something else, rather than her still being here in body but not completely in mind with Alzheimer's. How would things have turned out, if another card had been dealt by nature?

    I think too much about things I can't change sometimes, perhaps subconsciously as a way of resolving my inner feelings. Its not been a great week, mum still keeps going in her ever decreasing circles, and I keep on hoping things won't change, even though I know they will.
     
  20. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,059
    Female
    Chester
    #240 jugglingmum, Jul 6, 2019
    Last edited: Jul 6, 2019
    I suspect many of us wonder that. But it doesn't make things any easier and I think best not to dwell on it as it can't be changed and we've been dealt what we've been dealt.

    Edited to add: Well this is my experience anyway.

    Re friends, I suspect that if you indicate you are available you will be welcome but it will take time as they have plans they've had to make without you
     

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