A lifelong friend and me

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

  1. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    495
    Good morning @Palerider - thanks for the reply to my novel length post to you last night.
    I am pleased that your Mum is doing better today - but realise how that will make you feel and how it will make you question the point that you have come to. I think that the vast majority of us who have been in your position have experienced the same. You feel so desperately sad about the state of things that one good day starts you questioning and doubting all that you have planned and your mind has started to come to terms with.

    It's a bit like knowing that you should really go and have something checked out at the doctor (or dentist!!) - it gets bad enough for you to make the decision to bite the bullet, you make the appointment and then suddenly the symptoms all go away. You question your decisions, you cancel the appointment and then the pain rapidly comes back with a vengeance.

    It's like you wrote last night - those of that care will have these doubts and will cling onto anything we can to retain the status quo for our loved ones. Dementia is a cruel mistress though and gradually those we love become diminished to the point that we have to make a new normal for them.

    In my heart of hearts I knew that it was the right time to put my lovely Mum into residential care, as much as I felt I had let everyone down by doing so. 2.5 years on and I know that she could not and would not have survived if I had retained the status quo and bolted on even more Care visits and help. Despite her being in care during that time, I still had her and she had me! I am so glad that she entered the home able to join in and become known and loved as a person, rather than arrive further down the line, as a very sick, incapable and confused lady that rarely leaves her room.

    Sorry Palerider - another novel from me ...... I write as I speak ..... a lot!!!!
    It's a difficult time and I am thinking of you. Try and enjoy this good day with Mum and (easier said than done) try not to stress about what will happen.

    Cx
     
  2. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    Yes you right @2jays and @Toony Oony . Its very difficult not letting these thoughts control what is inevitable in the end. I think my acceptance is starting take hold. Mum seemed fine this morinng but then changed and became quite agitated, saying this isn't my home and she wants to leave. Also how much she dislikes being here now. My doubt started to resolve as it is clear that she has changed to a point that, even if she stayed here, it is no longer a solution or a viable option. It doesn't make this parting of our ways any easier, but I can say hand on heart the doubt I had this morning has diminished.

    The invisible brother showed up today (surprise surprise) and he witnessed first hand one of mums agitated states, I don't think he had grasped how difficult these outbursts have become until he saw one. Just now mum was in the kitchen crying, she had got so muddled with what she was trying to do it upset her, and I realised this is only going to get worse, and she will be on her own here at times, with no one to guide or support her.

    It is very hard but I just said to mum, after her little episode just now, that we were going to sort a new place out for her to live and she won't be on her own, she seemed to churp up a bit on hearing that and smile 'oh yes that would be better', so even though we can't talk about things like we used to, there seems to be some approval from mum -which is a blessing

    I have done this role for 4 years now with no break and I think in hindsight that we run the risk of becoming blinkered as we try to get by day in, day out, we keep going, ploughing ahead but not noticing the hole we are trying to patch up with fixes is getting bigger and also all consuming.

    Thank you both for your comments which have been more than helpful, and I am grateful that you took the time to reply, even though to novelist proportions @Toony Oony ;)
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,519
    I think this is the problem the variations in behaviour fool us every time we see a peak, a flash of competence then it flutters out. If we had a chart we would see the downward trend.
    I think it depends on us too, like you I have been caring for many years without a break. Perhaps our ability to discern gets a bit blunt too.
    My judgement is not sharp as for the last two days I have been under the weather, so everything is like walking through water, far more effort needed. Once your plans are complete and carried through I am am sure you will see the wisdom of it. It is natural to question oneself. Take care x
     
  4. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    It would be a good thing to have a chart to look at and reflect on, to remind us of which direction we are going. I think I had become so anguished with mums wishes and the solicitors butting in that I would never be able to make decisions for mum, but this last week that has changed. As a close colleague and friend messaged me today 'be strong and get your mum to respite'. Doubt is a way of making decisions, but sometimes doubt can be misplaced, not forgetting that doubt can also help us. Right now, my doubt is that mum has changed so much in the last few weeks that any other opposing doubts are now outweighed. You are right @AliceA , this plan has to be carried through to completion and then we will know where we all stand, most importantly mum.
     
  5. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    495
    I must keep it short I must keep it short I must keep it short x 100
    Hope you have a good weekend @Palerider ;)
     
  6. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    529
    Female
    High Peak
    4 years without a break: of huge responsibility, of knowing it's all up to you, of not just putting your own needs second, but throwing them out of the window, of being on call 24/7, of never really relaxing.


    4 years of not being spontaneous, not having friends round, not making new friends or finding a new partner, of feeling isolated because you can't just go and visit people.


    4 years of getting older (!), of not making plans for your own future, of not being able to seek new employment in a relaxed way, before things get to crisis stage.


    4 years of being patient, kind, tolerant, enabling, comforting and generally caring, whether you feel like it that day or not.


    And not least, 4 years of seeing your lovely, lovely mum slowly disappear and knowing this is the one time she really can't help and make you feel better. 4 years of sadness and feelings of grief and loss. 4 years of desperately hoping you are doing the right thing and guilt over not being able to lessen her suffering.


    4 years of not having a life of your own.


    I know you do it all willingly and would continue indefinitely if things remained manageable. But your own wants, needs (and human rights!) have to figure in the picture somehow or you will spontaneously combust! It's good that you're taking a bit of time off work. There is only so much one person can do. (Even you!) I hope you'll find time to take a couple of steps back this weekend and manage to contemplate the future in a positive light.

    x
     
  7. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West

    I think you are spot on their @Jaded'n'faded. I really think you have hit every turning point I have come across on this journey, but didn't realise it until you pointed it out ...its quite startling
     
  8. AliceA

    AliceA Registered User

    May 27, 2016
    2,519
    Sometimes I feel if we overthink it would disable us, we can only cope with one step at a time.
    Imagine if at the moment of conception we saw all the ups and downs ahead in one go!
    Utter contraception epidemic.
    Yet we have children and cope. We deal with this dementia cookoo in the nest in the same way one painful step at a time.
    I try to look for the best in every crisis. This is not a compensation just a survival technique!
    I have learned I am stronger than I thought, more vulnerable too. I am learning not to be so independent perhaps the hardest lesson of all. Our pain can be tied to the expectation of what we consider normal.
    I have met some very brave people, some very caring people and some overpaid idiots.
    I feel we have to find a way through this, not the same way for everyone, the dementia is different and the personality is different.
    What ever we have been, we are not that now. Equally the person with dementia is now different, their needs are different. Part of our dilemma is trying to see their lives through our own eyes. Quite impossible perhaps.
    Many settle in a secure environment quite readily once there, others may not but the question is were they fully settled at home? Trouble is we deal with a world of imperfect answers.
    Just my thoughts at reading this thread.
     
  9. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    Today I'm struggling with my own anxiety, as I want to get this move to respite over with and get mum settled. Hoping a place comes up on Monday, as this is dragging on and although I know its the right thing to do for both of us, the waiting is torture. My hearts pounding at the moment and I am quite sweaty -anxiety is not a good thing:(
     
  10. AliceA

    AliceA Registered User

    May 27, 2016
    2,519
    Slow slooow breathes. Sometimes when we feel anxious old anxieties catch up on us too.
    I can feel anxious just thinking about care homes at the moment. This because there seem no nearby ones in this county that the county approves.
    This is about budgets rather care. I know the feeling, the body has rules of its own. Try and calm yourselves, it is hard in the short run but I feel sure you will settle once your Mum is in and starts to feel the security.x
     
  11. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    Mum has just been sundowning and trying to leave the house to go home to see her mum and dad. Nightmare moment, but I managed to stop her and diffuse her aggression that came with it - I have never seen her like this before and I can't believe this change has come so quickly.

    She's calmed now and watching Strictly and laughing -thank God
     
  12. AliceA

    AliceA Registered User

    May 27, 2016
    2,519
    So difficult, but it proves she needs a team not just one. Enjoy the rest of the evening. X
     
  13. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    My evening had not been enjoyable -far from it. Mum kicked off last night and was quite aggressive. I managed to get her settled in the end and I am tobe honest feeling frazzled this morning and could quite happily burst into tears
     
  14. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,352
    Nottinghamshire
    I’m sorry to hear you had a lousy evening. I found aggression most difficult to deal with. I don’t suppose there’s much chance of you getting a break today. You sound as though you need one. Here’s hoping...
     
  15. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    180
    Hoping that you have a better day with your mum and that you get news of respite tomorrow.
     
  16. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,323
    Female
    Chester
    I'm sorry things are so difficult at the moment. I really hope news of respite comes tomorrow.
     
  17. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    Thanks @Bunpoots , @anxious annie and @jugglingmum .

    Its been a hard week to see this, but here I am with mum. Today she has been lucid and we went for a long drive, visited Chester Cathedral and we lit a candel together and then came home. I am roasting sirloin as this may be our last Sunday roast together, and today mum seems more settled, until the daylight begins to fade and we shall see how she is. I knew this moment would come, but I can't believe how quickly it has come. Mum thinks she is going to move back home to where she lived, and I have let her believe that, because it will be easier to take her to respite with her not remembering where her childhood home was. I'm figuring out how to get her things packed, but I may have to take her, come back and then pack her clothes and a few personal sentimental items
     
  18. AliceA

    AliceA Registered User

    May 27, 2016
    2,519
    Thinking of you, it is a difficult task. Sometimes it is better to take in stuff afterwards. Just get her settled with the essentials. Take care.
     
  19. Starbright

    Starbright Registered User

    Apr 8, 2018
    449
    Female
    I do hope tomorrow goes well for you both @Palerider thinking of you. ... and it’s ok to have a good cry now and again it helps to relieve the pressure ...(( I seem to cry a lot lately)). Like you I cooked beef today followed by apple crumble hope you both enjoyed yours. Do take care here’s a (((hug ))) A x
     
  20. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    Just got her to bed. Interestingly she has various chocolate bars stashed away in every draw of her dresser. Somehow she has got that past me?? A peaceful end to the day and I am glad
     

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