1. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    Hi Purdy - thanks for the reply, and I'm sorry your family has been through this too. It is just horrendous. You said your dad told you he wanted nothing to do with you - that must have been so upsetting to hear, even knowing that he didn't really mean it. How long was he hostile towards you? Lewy Bodies is just awful - none of us can believe the speed at which it has taken my poor dad and just debilitated him, both physically and mentally. Is your dad disabled by it, or is he still mobile? Yesterday I asked one of the nurses who has years of experience working with patients with this particular type of dementia if dad would end up like one of the poor people I see in the home who are bed-ridden and unable to communicate, and her reply was, 'It wouldn't be fair to lie to you. Yes'. I cried in the car after leavng to go to work. Since January, dad's condition has deteriorated by the week - the condition is changing faster than we can keep up with and none of knows how to handle it. He has started choking on everything he eats, as well as on water - the first time it happened I went into a total panic and didn't know what to do. His voice is getting weaker all the time and is now barely a whisper - I have to lean right in to hear him and he gets frustrated if I ask him to repeat anything.

    I'm glad you and your dad get moments of clarity, and that he knows you love him. I hope dad will come to realise the same for us x


     
  2. lacey1962

    lacey1962 Registered User

    Jan 9, 2016
    38
    Female
    Crawley
    Father

    My father is 91 and has dementia. my mother cared for him for 4 years with carers and help from her 3 children but it was too much for her and she could not cope, he has been in a care home for 3 years and still asks to come home and is upset when we explain he cant as my mother has had several falls and broken her hip, elbow and shoulder. It is so sad to see him in a care home unhappy but I think my mother would have just worn herself out and become very ill if she had continued to care for him at home. He never excepted having the carers in to help him and was rude and nasty to them and eventually to my mum who is 87 and it was not fair to her to spend the rest of her days living like that. I feel so sorry for you and your family
    Sally x
     
  3. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    Thanks Sally. I'm sorry your dad hasn't settled in the care home - it must be so upsetting for you to see him distressed. I worry that this will be the case for dad. I know it's too much for my mum, and unfortunately there are some forum members who have been a little hostile about the comments I made in my original post. I don't blame my mother - I just wish that she had been a bit more honest with me and my sister about her intentions. I think she knew when dad went into respite there was a strong possibility he wouldn't be coming back home, and I just think she should have told us that. Is that so unreasonable?

    We've had all sorts of nastiness from my dad. He told me several times last week that I don't give a s@!t about him, that I couldn't care less, and now we're getting the comments about his family having stitched him up. I know it's not him and he doesn't mean it. I just miss him so much - I miss the man he used to be so much that it feels like a weight on my chest and I wonder whether this pain will ever go away.


     
  4. lacey1962

    lacey1962 Registered User

    Jan 9, 2016
    38
    Female
    Crawley
    Father

    I have to force myself to visit my father as it upsets me so much, my mother is only there 10 mins and she asks me if we can go home. She now has the start of dementia and lives me with and my husband . I always try to think of my dad how he was with my mum and us children , he was a lovely dad and husband . I cant bear to think of him as he is now ( I think it helps me deal with everything) Everyone deals with their situation differently and it has to be in the best interest of all of the family not just the person affected as it affects everyone of you x
     
  5. 99purdy

    99purdy Registered User

    Oct 31, 2014
    129
    Hi Northern,

    Dad was taken ill very suddenly and it has been downhill ever since. However with regards to Dad his condition can suddenly alter but then he stable for a few months. He was very active before his illness and loved walking. He is still mobile but cannot see very well and is very deaf, refuses hearing aids. He has 1:1 care as he suddenly sets off walking but walks into the wall other residents, he then gets into an altercation, hence the need for 1:1. He was very nasty to us for at least 10 months. Now he loves us all! However another problem has arisen he is always trying to grab mine and every other females bottom and other things! This has really upset me. Dad needs help with all of his personal care but is very aggressive. The team who look after him know exactly how to treat him. He has had very serious illness when he has been hospitalised. He also chokes on food and water. He had to have puréed food for a few months he is now back eating normally. I have been told that Lewy Bodies can cause very aggressive behaviour, however the condition can be stable for a few months then plummet quite suddenly. It really has been a roller coaster for me and my sister. Do not feel bad about not looking after dad at home. From my own personal experience I know that it would have been impossible to keep dad at home. We both live over an hour away from the home but we visit twice a week and ring everyday. During holidays etc we try to visit more. Sending lots of love to you and your family. Everybody on here knows exactly how you are feeling. X
     
  6. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,593
    Yorkshire
    #26 Chemmy, Apr 16, 2016
    Last edited: Apr 16, 2016
    The people who have been in your mum's situation have just been very honest, not hostile.

    I happen to agree that your mum's views trump everyone else's in this.
     
  7. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    I was referring to one particular comment, and nothing to do with the comments anyone has made about mum. I appreciate people's honesty - that's why I'm here. I have been more or less living at my parents for the past four months, so no one can really judge an entire situation from one post made at a time when I was in a highly emotional state and very upset by what has been a sudden and unprecedented series of events.

    Thank you for your kind words. I hope you never go through what my family has been through, and if you already have then I'm sorry for you and your family. I hope people were kind to you.

     
  8. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    We had a similar experience - an inappropriate incident that was very upsetting. Apparently it's common for dementia sufferers? They must have been a very difficult 10 months when your dad was being nasty. I'm going to try to brace myself for the worst and hope that it will pass. I know the reality is that we can no longer cope with dad's needs - it's just been very difficult to accept. And I'm not angry with my mother, although unfortunately my original post seems to have been misinterpreted by some. I questioned whether we should try to do more, but I can accept now that we have all done as much as possible. I just found that acceptance very difficult and very painful. Sadly, there's no handbook telling us how we're supposed to respond to situations such as this. The three of us have reacted to dad's condition in very different ways - I don't think any of us are wrong, just different. Thanks for your replies and your thoughts, and I hope you and your sister are bearing up and your dad is as settled as possible x


     
  9. 99purdy

    99purdy Registered User

    Oct 31, 2014
    129
    Hi Northern,

    Never feel that you have to apologise for anything you post on here. You will find that everybody understands what you are saying. Some will have different opinions and may say so, but please do not feel judged. You are doing a brilliant job with your dad and only on here, I think, do people understand exactly what you are going through. Keep posting what ever. I some times do waffle when I post but I never feel judged. Post whatever somebody will always answer. X
     
  10. Gwendy1

    Gwendy1 Registered User

    Feb 9, 2016
    414
    Glasgow
    Hi Northern, sorry for delayed response! Yes, dad settled into the CH- I've had my issues with them, but he's oblivious and seems content enough. He's been in a year now, sleeps most of the time- I think he's just physically and mentally done in since his last bout of pneumonia. When he first went in the home, he used to stake out the door and try to break the code, it's odd remembering that for me, as he's so very much frailer now and tbh, I don't think he knows where he is anymore. He has never mentioned his old house once, or any aspect of his daily life pre dementia. I remember the enormous stress and heartbreak I felt at the time he was being assessed/admitted, and I really feel for your family at this time trying to deal with this.x


    Sent from my iPhone using Talking Point
     
  11. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    Thank you. I can't believe what an emotional rollercoaster this all it. One minute I feel calm and can think things through rationally, the next I just feel an emotional wreck. I cry every day after leaving from my visit to see dad. Today I found it difficult to look at him because he was talking about coming home and I was sitting there thinking, I can't lie to his face. He's convinced that he's got worse since he went into the home, but what he doesn't remember is how difficult things have been for the past few months. I love my dad to bits - he has always been one of my best friends - and to have him look at me as though he doesn't trust me and is questioning whether I even care about him is just awful.

     
  12. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    Hi Gwendy. I'm glad your dad's settled, and although it's horrible to think of other people going through this or having been through it already I can take some reassurance that things might become easier for dad over time. What issues have you had with the home? One saving grace for us is that the staff where dad is are so lovely - nothing has been too much for them, they are kind and patient with dad, and they have been so kind to me, my sister and to my mum too. The hardest part at the moment is that dad is constantly talking (whispering I should say - god love him, his voice is getting weaker and weaker by the day) about coming home. He is counting down the days to next Friday and every day when I visit now I am sitting with him with the thought that I am deceiving him. He looks at me as though he doesn't trust me and every day he tells me that I've given up on him or that I don't love him like he used to think I did. When dad was home, he would obsess with the temperature and I think I mentioned somewhere else here that I would spend hours on end putting the fire on and off, taking his jumper on and off, opening and closing doors and windows - it was relentless, would go on for hours, and there was no getting any other conversation that wasn't heat related from him. Last night when I came home from seeing dad I realised I would give anything to be able to spend a day doing that again, as frustrating (and I know that sounds mean, but the same conversation for eight hours on a loop would take its toll on a saint) as it was at the time. Another member of this forum wrote on another post 'once you've seen one person with dementia you've seen one person with dementia' and that seems to sum it up perfectly. Our poor dads - my heart breaks for them both x

     
  13. Ellaroo

    Ellaroo Registered User

    Nov 16, 2015
    161
    Liverpool
    Is your dad getting maximum care package at home ? I know when my late husband was ill we had district nurses 3 times a day plus care staff twice and possibly more visits a day. We alsomhad hospice at home and they did night night sitting service from 10 until 7 am.
    It was pallliative care bit wonder of you dads deterioration would qualify him for virtually 24 hour care .

    I have my mum at home and like you am dreading day or hope it wont come when she needs carehome.
    I do hope your dad gets care he needs where ever it is .
    Thinking of you xxx
     
  14. Gwendy1

    Gwendy1 Registered User

    Feb 9, 2016
    414
    Glasgow
    It is funny the things that we miss, true enough. Dad used to phone me at 2am asking me to lunch :) he thought every day was Sunday, so I used to keep the Sunday paper all week to stop him going to the newsagent and causing it!
    It's only in the last few months I can visit dad without coming away wanting to cry/ actually bawling my eyes out. I still have my moments, but I guess I've 'accepted'. On reflection, I came to terms with things when I nearly lost dad with his last pneumonia in January. Its been easier in that all the frustration and anger dad felt before has vanished from him, he's more frail, but more calm. Like you, I love my dad to bits. He was always on my side, I was the youngest and the only girl, so I could do no wrong! Lol! ..I hate that I can't look after him, but also know he wouldn't have wanted me to give up my job, etc. He had a great life with my mum when she was alive- travelled everywhere, better social life than me ;-)
    I'm so glad that you're happy with the CH, my issues come and go with dad's home. All good at the mo, fingers crossed.. I hope things get easier for your family and your lovely dad.x




    Sent from my iPhone using Talking Point
     
  15. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    Hi Ellaroo, Dad has been having carers in four times a day - about thirty minutes in the morning to wash and dress him and then twice in the day (about fifteen minutes to check whether he needs toilet etc) and then again in the evening to put him to bed. We were told that this was the maximum help we would get - my mum has said that a night sitting service isn't available. I know a nurse who told me that it's available where she is, although she works under a different area. These are all things we'll need to find out this week, although everything seems a bit up in the air as our regular social worker is off on leave and the replacement social worker was apparently rude to my mum the first time they spoke.

    The problem we've got is dad's complete lack of mobility. It takes two people to move him anywhere now (I made the mistake of trying to move him from his chair by myself yesterday, and we had a fall. I managed to get beneath him so that I broke the fall, but it was very frightening and proved that no one can manage dad's care by themselves anymore). We can't expect dad to stay in one place during the times between the carers' visits, and having two of us at home at all times is an impossibility with work/families. None of us know what to do for the best. We know what we want, but we realise that what we want might not be what's best for dad or for any of us.

    It sounds as though you've had to go through a lot of heartache. I hope your mum's health stays strong for both your sakes xx

     
  16. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    I just can't get over how quickly the situation and dad's condition is changing. I've got a photo on my phone from September - dad and I went out for a walk (which has been difficult for him for years because he's had arthritis since I was a child) and for some breakfast. In it, he's my smiling lovely dad and now, just over six months later, he's five stones lighter and he can barely move. The slightest thing is setting me off - my niece and I were looking at craft stuff on the internet earlier and there was a hat (this is going to sound ridiculous) that reminded me of a summer fayre I went to with dad as a kid. And that was it - I had to go into the kitchen because I didn't want her to see me upset. I can't go into my parents' house - it's too painful without him there. Like your dad, I know he wouldn't want me to give up on my dreams (I managed to land my dream job last month, after a decade of working to get there - and dad had supported me all the way. It came at the very worst time possible, but I owe it to him and to myself to not give up).

    I hope things at your dad's care home stay good. I am dreading the week ahead - none of us knows what happens next in terms of seeing if we're able to get the extra help needed to keep dad at home, but realistically at this point I'm thinking this is probably it. I never thought it was humanly possible to cry so much, but apparently so. How has your dad been since his pneumonia in January? xx


     
  17. Gwendy1

    Gwendy1 Registered User

    Feb 9, 2016
    414
    Glasgow
    I kept dad at home for a year after mum died- it was a nightmare to do so, if I'm honest. Got 24 hour carers who lived in- they were brilliant, but dad was physically really well- mobile, continent, just needed a wee bit of help. Had a massive struggle getting direct payments from council and dad paid for the rest. It was the only way we could get care at night, and dad was a huge risk to wander. I used to cover breaks for carers with other family members daily. It broke down as dad deteriorated mentally. Dad is just a poor wee soul since his pneumonia, sleeping a lot, puréed diet because his swallow is poor. He's still mobile, just a bit rocky, and can't get up without help. Please let us know how u get on this week. You will get through it. I know exactly what u mean about the speed at which things change, I think it's almost shock, accompanied by total lack of control which is so upsetting. Your dad would be proud of you, if he was his old self. I try to focus on the way dad used to be when he's doing the 'stare' at me- and sometimes there's a breakthru and he whispers something lovely to me..I really hope you get somewhere this week. It's such a horrible time for you all. X


    Sent from my iPhone using Talking Point
     
  18. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    Gwendy, you have been so kind and I do really appreciate it as I know that talking about it must be so difficult for you. I am all over the place again tonight, as this evening found out that mum has received a letter following dad's brain scan just a few days ago. We were told we'd hear back in a fortnight's time, but an appointment has been made for the start of this week. I'm assuming this only means bad news? - I've never known the hospital to move that quickly.

    My dad is also limited to a pureed diet - it is heart breaking. You just never look at a parent and think that one day you might be helping them walk, eat, wash, go to the toilet - all the things they did for you as a child.

    I spent a few hours with dad today and they were mostly filled with talk of hallucinations and people breaking into his room...but, there was a completely lucid moment in which dad looked at me and said, 'I do love you, you know'. I wish we could go back. I wonder whether if we knew what was around the corner we would do things differently, but I suppose none of us will ever know xx

     
  19. liz56

    liz56 Registered User

    Feb 15, 2015
    34
    North Somerset
    Hi Northern
    Like all of us on here, some of our situation is like yours, some different . All people with dementia are unique - but oh do we understand the stresses and worries!
    We looked after dad for 18 months in our house, with a complicated pattern of family , carer and daycare in a care home. Dad hated daycare, only once a week but essential for my OH to have a break. It all broke down at Christmas when dad stopped sleeping and had repeated falls. He moved into the CH where he had been going for daycare, but they couldn't meet his needs ( long story but he wandered into town !). We had to move him to a more secure place and amazingly he has settled, made friends, and even joins in activities! Personally my relationship with him is so much better, we now do the nice bits like taking him out for cup of tea but others are doing the night care, the bathing, helping with toile ting . I feel so much better.
    Please be kind to yourselves, you can only do as best you can and there is a limit to what you can do on your own at home . Like you we shared out his caring, but couldn't have 2 of us around at once . Dad needed a ' night shift' and we couldn't do that long term and go to work the next day.
    Your dads needs sound huge, and changing so rapidly. It must be so hard to decide what to do for the best. Thinking of you , and I hope things get a little easier at the CH.
     
  20. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    Thanks Liz. It is reassuring to know that others have been in this same awful predicament and have been able to find peace with the decisions that were necessary, but my god I wouldn't wish this on anyone. I'm glad your dad is settled where he is now. My grandfather also managed to leave the home where he was living - how on earth can that happen in a place that is supposed to be safe and secure?!

    Dad had two falls at the care home yesterday, and this is yet another worry. His needs are changing quicker than we're able to keep up with. We had a stair lift put in, then had the bathroom and toilet converted. The refurb took 10 days - by the time it was done, dad was unable to use the bathroom even with the help of the carers. We had handrails and grips put in, but within weeks dad had lost the strength to use them. We got a commode that we could bring down to the living room so that we wouldn't have to get dad upstairs to use the toilet - by last week, even trying to stand him from a chair and get him on to the commode that was right next to the chair proved beyond me. He almost fell, and would have if I hadn't managed to get behind him and break his fall. Then he started choking on everything, even water.

    Last week I accused my mum of giving up. I realise now I chose the wrong phrase. I shouldn't have said 'giving up' - I should have said 'admitting defeat'. This disease is defeating us all. If full time nursing care is needed - which sadly I fear it will be - then I am just dreading what this will do to our relationship with dad. He is already accusing us all of stitching him up and not caring about him - he will hate us if he finds out he won't be coming home. I know he doesn't mean what he says, but my god it hurts like hell. Where do people find their strength?

    Thanks for thinking of us and for your kind message. It's lovely to read that your relationship with your dad has improved. The differences between dementia patients is astounding - I don't think anything could really prepare anyone for this.


     

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