Feeling overwhelmed by dad's Lewy Body Dementia diagnosis

Discussion in 'I care for a person with dementia' started by Northern75, Feb 7, 2016.

  1. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    Hi all,

    I am new to the forum and found this website while researching Lewy Body Dementia. My dad was diagnosed last week after a very difficult few months for all the family - sleeplessness, hallucinations, sharp decline in mobility (my dad has always struggled with arthritis and had a knee replacement two years ago which he didn't respond to well). Looking back now, we think there were much earlier signs that something wasn't right. A year ago dad began to lose interest in things he'd always loved - reading being the main one. He also became very needy - I live just down the road with my husband, but my dad would need to see me every day and if there was the odd day I couldn't make it he would make me feel guilty. I feel guilty now for having felt so suffocated by it, as I now understand that it wasn't him but this horrible disease that has taken him in its clutches. It is all so awful to watch. My dad is with us, but I miss him every day - he isn't interested in talking to us much (although he keeps talking about suicide and wanting to die) and he is so exhausted all the time, spending much of his time in bed. Is it normal for someone with Lewy Body to sleep so much? I have read stories online about people who seem to live full and pretty active lives whilst suffering with this, but for my dad this just isn't the case at all. He is only 71. I know there are people dealing with this at a much younger age, and it all just seems so cruel.

    Does anyone have any similar experiences or know if what is happening to my dad is a 'normal' progression for Lewy Body dementia? My heart goes out to all of you living with this or with someone you love who is suffering - it is heartbreaking.
     
  2. Tali17

    Tali17 Registered User

    Feb 7, 2016
    2
    Hopefully helpful advice!

    Hello,

    There is lots of information on the Alzheimers Society website, in particular a factsheet on Lewy Body Dementia.

    It is quite common for sleepiness during the day with DLB, but there could be a little bit of depression going on as well as the dementia? Contact your dad's GP and ask for a referral to a CPN (Community Pyschiatric Nurse - not as scary as it sounds!). They will offer advice on your dad's low moods, particularly if he is expressing thoughts about wanting to die. They will offer advice on how to get your dad's moods up, but try a non-medicated route first if possible?

    Your dad is still in there, despite his dementia diagnosis. I have cared for many people with dementia over the years, and I find that activities based around music are very helpful in engaging people. I have looked after a lady with very advanced dementia, who does not communicate verbally anymore, but she can sing all the words to 'It's a long way to Tipperary' without using a songsheet!

    There are lots of support groups out there, and the dementia friends scheme is a great initiative to get people to talk about and understand more about dementia. Dementia Friends is great, and I love the 'Bookcase analogy' as this is really good at summing up how dementia works.

    Hope this is helpful!
     
  3. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    Thanks so much, Tali - this is really helpful. Dad was seen by a psychiatrist last week. He went into hospital for 8 days - he went in already taking certain medication, but by the time he came home he'd been prescribed lots more, taking his total number up to 17. I know you're right about dad still being there, it's just so difficult to see someone who's always been happy and has loved his family so different so suddenly. Thanks for your reply and your advice
     
  4. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
  5. Aitchbee

    Aitchbee Registered User

    Nov 3, 2013
    87
    Hello. Good advice from Talii and Amy. My Mum has Lewy Body dementia. She now has advanced dementia and is unable to do anything for herself. Her sleep pattern tends to be 48 hours without sleep and then she crashes out for 24 hours. Melatonin helps some people get a more normal sleep pattern. Most of the time she seems to be quite content. When she was able to go out we took her out to cafes and to the shops. She hallucinates much of the time but generally the hallucinations don't seem to distress her.

    Amy mentioned the Lewy Body Society and their website - I have found the forum on there useful and there is a lot of other helpful information about LBD on the website.

    Keep using Talking Point it is a great support
     
  6. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    Thanks for this, Amy - I have been trying to read up on Lewy Bodies so I know how best to help dad. I don't know if it's the same for others, but I feel useless and it's very frustrating. Thanks for your kind words - it has helped so much just reading others' stories and being able to share in their experiences x
     
  7. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    Hi Aitchbee, thanks for your reply to the post. I am really sorry to hear about your mum - going 48 hours without sleep must be so distressing for her. It's a relief that she doesn't find the hallucinations upsetting - my dad also isn't distressed by them, and he's aware that they are hallucinations and not real. My dad has been managing sleep better since he came from hospital last week, but I'm worried about how tired he is all the time. I spent an hour with him earlier, but then he wanted to go back to bed. A couple of hours later he woke to have some food with us, but as soon as he had eaten he went back to bed. My mum says he seems more peaceful now than before he went into hospital and had a change of meds, but it worries me that his mobility is getting so much worse. I couldn't sleep last night and was looking through photos on my phone - there is a lovely photo of dad from a day out we shared together last summer, and the contrast in his appearance is drastic. He keeps saying to me that he doesn't look like him. I told him we will go on more days out when the weather gets better (if it ever stops raining), but even as I say it I can feel a horrible doubt in the back of mind. Am I lying to him when I tell him that?

    Sorry for the long reply, and sorry that you're going through this with your mum. I'm glad she's content - that must at least bring you some comfort. Best wishes
     
  8. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    I'm glad Aitchbee came back with a positive report on the Lewy Body Society website and forum. I hope you can find some helpful information there.

    I also found the American version: https://www.lbda.org

    I find the information on the UK's Alzheimer's Society website to be a great help. It's clearly written and usually thorough. The US Alzheimer's Association has similar information, but I don't think it's as well written. I imagine we've all spent sleepless hours Googling the depths of the Internet.

    Again, I can't speak specifically to LBD, and know there are some differences with how it presents to Alzheimer's. I also know that every person with dementia is unique in their experience and presentation.

    Having said that, there do seem to be common experiences that many of us have experienced in our person with dementia (PWD), or heard about here on TP, or in the local carers' cafe, or from others. (My PWD is my mother, age 73, diagnosed with Alzheimer's a year ago after a crisis and sectioning in hospital, probably moderately advanced, now in a care home near to me, and with no short-term memory as well as the dementia.)

    Delusions (false, fixed beliefs) and hallucinations (experiencing sights/sounds/etc that are not there) of different types, are not uncommon. I am thinking that there may be some link between having LBD and having certain types of hallucinations, but am not sure (told you I am woefully ignorant). If the hallucinations are not upsetting, that's great, and I hope they stay that way.

    It's possible there could be some depression going on but it can be hard to tell. I do know you have to be careful about antipsychotic, and other, medications with a patient with Lewy Body dementia but of course everybody may react differently.

    One thing I know is common to caregivers of anyone with dementia, is the stress and upset and frustration. It's such a difficult, consuming disease to deal with and of course there is no cheery prognosis. It's degenerative and terminal and we know they will just get worse, and I can't think of any worse diagnosis.

    I definitely know the "useless" feeling, because there isn't anything you can do to stop or fix the problem.

    However, you are not useless. Your dad (and the rest of your family? is he at home with family?) will need help with all sorts of issues, and not just the hands-on caregiving. There is legal and financial stuff to sort out (I will leave it to the UK residents to advise you, but power of attorney and bill paying and money handling and navigating the system, for a start), there will be medical issues to oversee (doctor's appointments and medication and so forth), the issue of caregiving (getting carers in, finding a local day care program, carers' groups, activities for your dad like Singing for the Brain, et cetera), and practical things around the house. Do get the legal bits sorted as soon as possible but don't feel you have to do everything immediately. Someone told me that this is a marathon, not a sprint to the finish, and you have to pace yourself.

    I spent (and still do, some days) a lot of time at the beginning reading past threads here on TP, to get an idea of what other people's experiences were and to have an idea of what I might be facing. That may or may not be helpful for you.

    Something else that helped me was to find out about local support options in my area. I've been to a number of different support groups (carers' cafes or carers' groups) in my area and liked some better than others. I have also been to some classes and workshops and lectures. These have all been useful because: I learned something, I sat in a room with other people who understand, I got a referral for a solicitor, I made a contact, I found out about other support, et cetera. So I would encourage you to do that. You might start by ringing Age UK and the Alzheimer's Society, or maybe the UK residents here know better how you can access that network in your area.

    I've learned a few things about dementia in the past year:

    -if someone offers help, don't think about it, just accept!

    -dementia will eat up as much time and energy as you can throw at it

    -don't let it consume you; you and your life are important, too (easier said than done)

    As far as feeling you are lying to your father when you tell him you will go on more days out when the weather is better: STOP feeling guilty and berating yourself (as best you can). If you let it, the guilt will eat you alive, every day, until there is nothing left.

    You were spending time with your dad and reassuring him the best you could. Whether or not it's literally true has, to me, no bearing on the situation. You were being kind to your father and hoping for the best, and said what you said with the best of intentions. Kindness and hope are good things.

    Nobody has a crystal ball to predict the future. You could have many outings with your dad to come, or you could get hit by an anvil falling from the sky as you read this. If you tell a friend you will have lunch next week, and then you don't because you get sick, did you lie to her? No, you gave her the best information you could at the time you made the statement. That is all any of us can do.

    On the subject of lying, some of us have found that in dealing with dementia, it is often kinder not to be completely and openly truthful about everything all the time, and especially not helpful to volunteer truth. Someone here will post the compassionate communication link, but the idea is that rather than correct the person with dementia when they come out with something that isn't true (and possibly upset or shame or distress them), it's kinder to just go along with things. So when my mother sees a seagull and says, "look, it's an eagle!" I don't say "no, mother, it's a gull, don't be stupid, can't you tell?" but rather just go along for the ride. It does no harm, it doesn't matter what kind of bird it is, if I contradicted her or corrected her she would get upset, and when she gets upset, it's really not good for her. My goal is to keep her as calm and content and anxiety-free as possible. So who cares if it's not an eagle? If she is going on about one of her many delusions I just go along, try to validate her feelings, and try to reassure her, and then try to distract her. ("Really? Someone stole your socks? That's terrible. Tell me about that. I can see you're upset. Of course you're upset; anybody would be upset if their socks were stolen! I'm sorry you are so upset. I will look into the missing socks for you and let you know what I find out. Let's go get some ice cream." It sounds like something out of a bad textbook but if I can manage to get the body language and tone of voice correct, it can work, and then she doesn't spend hours being upset about socks.)

    I'm not saying this is instinctive or easy to do, and it works for some of us and not all of us (and some of us only some of the time) and I often feel I am an actor in a strange play, or doing improv comedy or something. But I do think most of us have been there with the bizarre moments (and you can see the long-running So Bizarre! thread for many examples).

    This is an awfully long-winded way to say, you are not alone, your feelings are reasonable and understandable, you are not a bad person, try not to beat yourself up, try to be kind to yourself, do what you need to do to take care of yourself, and remember that TP is always open when you need it.
     
  9. Aitchbee

    Aitchbee Registered User

    Nov 3, 2013
    87
    A lovely post from Amy and full of good advice.

    Ps it was the American Lewy Body Dementia Association website that I have found particularly helpful as it has a lot more information on
     
  10. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    Thank you so much for your lovely message, Amy. There is so much here to think about (financial and legal issues would never have occurred to me - and what a horrible thing to have to be dealing with now, but I realise it has to be done. It's strange because I'm sure dad realised long before we did that something was wrong - he was insistent, for example, that his bank account became transferred so it was in both our names). I'm sure my mum will deal with that side of things. This is another unpleasant effect that this diagnosis has had on our family: my mother and I are really not getting on well at the moment. She has always been career orientated and nothing will get in the way of her work, not even my dad's health and well-being. It has become a real bone of contention. She, my sister and I sat down at the weekend and discussed a rota, so that dad's care can be managed between the three of us (he does have carers coming in for half an hour in the morning to wash and dress him, and again at night to put him to bed, but they come so late that by the time they arrive these things have been done - besides, there is no reason we shouldn't manage between us if we all do our fair share). I know 'rota' sounds so clinical and impersonal, but it seemed the fairest way of ensuring that dad is never alone, but we all have a break (again, 'break' sounds awful, but we had run ourselves into the ground before Christmas and everyone was exhausted). I spent most of the weekend at my parents' (I only live eight doors down). Today, my mother was on the 'rota' to be there for dad during the morning and afternoon. I had a hospital appointment this morning which I got back from at ten thirty; I thought, I'll stop in and have a cup of tea with mum and dad before going home to do my prep for work. Sure enough, there's dad sitting alone in the living room and my mother in her office working at her computer. I stayed with him for the rest of the day until I had to leave for work (I work evenings). I'm going to sound very nasty and bitter here, but I really can't help the way I'm feeling right now. My mother has taken advantage of me for years. I have done their cooking, cleaning, washing, ironing - I have taken my dad out for day trips and on holidays whilst she works. A couple of years ago - before dad became ill - my husband said to me, 'you're more of a wife to your father than your mother is'. Is that right? Last week, she looked elated when I said I'd drop hours at work to be there more for dad. Then I realised that's ridiculous: I only work ten hours a week as it is, and I earn very little. I can't work any less. Plus, I am with dad for anything up to fifty hours a week. It was the look on her face that did it for me, and the enthusiastic nod she gave. I couldn't believe it. Mum is 67 this year and has had a full and successful career, and I am glad for her (although reading this I can appreciate that it might not seem so). I am 33 and have no career despite having a master's degree. My husband and I are having our third (and most likely final) course of IVF treatment, which began today. Two weeks ago, my mother suggested that we defer our treatment. Until when? Dad might be with us another ten years or more, and I pray to God that he is. By that time, I be too old to start a family. Am I wrong to want a family of my own? My mother certainly seems to think so.

    I apologise that this has turned into a massive rant. At a time when we should all be pulling together for dad, it feels as though our family is falling apart. My sister is equally frustrated with mum, as is my brother-in-law. How must it feel for dad, seeing that her work is so much more important than he is? She is breaking my heart, and I mostly worried that she is doing the same to him. I'm starting to think she just wants him carted off to a care home so that she can continue her life in peace.

    Again, I am so sorry. I don't feel there is anywhere else I can get this all off my chest. I have spoken to a friend about it, but I'm worried she thinks I'm a horrible person. All this bitterness and anger is certainly making me feel it at the moment.
     
  11. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    no worries

    Victoria, hold on, there's no need to apologise to us. If you need to get things off your chest, then go ahead and vent. This is a safe place and everyone here has empathy and at least some insight into what you're experiencing.

    There's clearly a lot going on and I am sure it's overwhelming. It's only natural to feel the need to let some of it out. Better that, than letting it eat you alive.

    If you'll bear with me I will try to address some of your points.

    The legal side of things is better advised by a fellow UK resident, but I would see to it that the powers of attorney get sorted sooner rather than later. If you wait too long, or there's an emergency, it will be harder to get these things in place (says someone who had to do the US version of these in an emergency and pray the solicitor would decide my mother had enough capacity to sign them). I hate to give you more things to do, but don't assume your mother will sort them, ask, please, for your sake down the road.

    I don't think it sounds terrible for you and your mother and sister to devise a rota, or to work in breaks. I think it sounds sensible. So don't worry that you might seem uncaring or unfeeling or whatever, to outsiders. It's practical and at least you are all admitting up front, that no one person can do everything by herself 24/7 forever. Too many carer breakdowns, and just plain misery, happen because there is no help in place and we feel we must do it all.

    Now I'm going to get personal, and please forgive me if this is rude or over the line, and please feel free to tell me to mind my own business. (I don't want to be the loud, rude American in the corner, so do tell me if this is out of line.)

    You work ten hours a week, you are trying to get pregnant, you are currently working up to 50 hours a week caring for your dad, and you are telling me you think you need to do more? Forgive me if I've got the details wrong. You are a wonderful, caring, supportive daughter and absolutely you should help out, but don't quit your job and don't think you need to be at their house every minute of every day. You have a right to your own time and your own life.

    This next bit is very personal, and again, forgive me if I'm out of line. You and your husband have a talk about your IVF treatments, and the two of you make a decision about what works for the two of you. Don't let your mother tell you what to do, or anybody else (well, maybe your doctor). Don't let your mother hold your future hostage, to suit her needs. I think she is completely out of line, to say anything to you about this.

    I will change the subject now, to something more domestic, although not less bossy, I fear.

    As far as helping out at your parents' house with cooking, cleaning, ironing, shopping, washing, gardening, repairs, and whatever else: stop that right now and pay somebody else to do it. Do you want to spend your time running errands for your mother, or cleaning, or ironing, or would you rather be spending time with your father? Anybody can do the washing, but only you (and your sister) can be your dad's daughters.

    Being a caregiver does not mean you have to do every aspect of caring (and all the chores) yourself, and by yourself. And while I hate to say it, eventually your father's dementia will get worse and you will all need the help. One or more of you may be unable to do as much caring due to other commitments, or health problems, or any number of unforeseen events. It's much easier to put the help in place now, even if you think you can manage, than to wait to need it and scramble to arrange it. Many here on TP will tell you of their struggles to get their PWD (person with dementia) to accept a carer or cleaner.

    As far as the strain between you and your mother, well, it's hard for us to say. Certainly everyone is stressed right now. Your mother may well be retreating, whether out of spite, or fear, or anxiety, it's hard to say. She may be in a sort of state of shock at the diagnosis. She may be using her work, to distract her from the situation. Or she may be truly not capable of having empathy for your father right now. It's hard to know.

    I also can't know if your friend thinks you are a horrible person. I can't imagine why, because you sound like quite a nice one, to me! Certainly you are upset about your dad and care for him very much and want what is best for him. If your friend is half as nice as you sound, then your friend will understand you were upset, and cut you some slack. It can be hard to discuss dementia with people who haven't experienced it, because it's just so challenging to comprehend it, if you haven't been there.

    I wonder what support you can find for yourself, in addition to here on TP. It can make a big difference.

    I hope I haven't made things worse with anything I've written, and I hope you know this is offered in the spirit of support and commiseration, not criticism or judgement. We all do the best we can, and dementia makes everything so very difficult and upsetting.

    Please do try to be kind to yourself in whatever way you can. Best wishes.
     
  12. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    Thank you, Amy - you have been so kind and I feel terrible to have offloaded all this to you when you are facing your own challenges with your mum. I've only been on this site for 24 hours and in that time I already feel less stressed - I even feel better equipped to give dad the support and help he needs. I don't think you have been rude at all - I appreciate your honesty. In a similar vein, one of the kids I work with has a mum who is a nurse and works on a dementia unit. When I told her about dad she said she was sorry and that it is awful and sufferers can decline quickly. It was only in the car later than I realised I appreciated her honesty. Of course it still hurt like hell, but we have had so many people treading on eggshells around us and not giving us straight answers that to finally have someone just tell the truth felt a relief, as odd as that might sound.

    It is not nice at all to know that other families are being affected by this, but a lot of comfort can be taken from knowing our feelings are not unique to us. Thank you again. Lots of lovely wishes to you and your mum x
     
  13. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Victoria, you are most welcome. When I first found TP, about a year ago, my mother had just been diagnosed (after a crisis and the US version of sectioning and 2 weeks in hospital), we'd moved her straight from hospital to a care home, and I was completely overcome by everything.

    I had a lot of sleepless nights and did a lot of reading here on TP. I wish I'd found it sooner, but it was a lifeline when I did.

    Like you, looking back after receiving the diagnosis of Alzheimer's everything suddenly made terrible sense. An enlightening moment, but not a pleasant one.

    I think that a big part of the help I've received here on TP, as much so as the practical advice (which there's been a great deal of!), is just knowing that we are not alone. None of us chose this, and given the nature of dementia, who would?

    Dealing with the disease, is bad enough. Dealing with the disease, plus family dynamics, financial issues, the paperwork (my own nightmare and don't get me started; I'll talk your ear off about the wretched, festering paperwork!), mundane things like laundry, the doctor's appointments, and, oh, yes, your own life, is overwhelming.

    So no apologies or terrible feelings on my behalf, I assure you, and I imagine others here would say the same. Let's hope everyone in the UK is mostly asleep, but I'm ? five hours behind GMT and am home with a cold today, so have plenty of time to listen if that is what you need.

    You are kind to offer your good wishes to my mother and to me. Right now, my mother is stable, she is safe, she is well looked after, I made some progress on her affairs today, and currently I am not driven to contemplate suicide* over the paperwork, so it's a pretty good day. But I thank you for your kind wishes; they are appreciated. I'm relieved I did not offend you; it can be difficult sometimes, especially with the Internet, to be direct but not upset someone, especially when they have as much going on as you.

    In the States we'd say, hang in there; I don't know if there's a British English equivalent of that, but please do it. And if you are so inclined, please keep us updated when you have time and energy.



    *mostly meant tongue-in-cheek. No actual persons were harmed in the writing of this post, although some paperwork may have been consigned to the shredder.
     
  14. angecmc

    angecmc Registered User

    Dec 25, 2012
    2,109
    hertfordshire
    Hi Victoria, my Mum has Lewy body dementia too, her abilities change sometimes by the minute, ie. She can start off being able to feed herself, minutes later she can no longer do it, sometimes she can walk, other times she can't, we never know what we are going to get. The agitation and anger is the worst bit plus the hallucinating. My Mum was put on Trazadone to help calm her and recently they have increased the dose, but said to not give the extra dose before noon as it would make her too sleepy. Just wondered if your Dad has been put on this medication, it might need the dose tweaking or time of day administering it changed. Having said that my Mum will often have a couple of weeks of being sleepy all the time and that is followed by days of her not sleeping at all. It is an awful disease and unfortunately Lewy bodies is very unpredictable. Take care xx

    Ange
     
  15. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    Hi Ange, I'm sorry to hear about your mum. We're experiencing the same unpredictability and it is difficult for everyone, especially dad. He gets agitated quite a lot and frustrated with himself. He's currently on a cocktail of 17 drugs, which just seems extreme. I'm not sure of the names of them all (I can't even pronounce most of them) but Trazadone isn't one of them. We took dad to the hospital yesterday and spoke with the consultant whose care dad was under when he was in last week. It was the tiredness we mostly wanted to speak to him about, and unfortunately his silence spoke volumes. My sister and I took dad out into the corridor and mum stayed behind to speak to the doctor - when she came out she was in tears. She told me the doctor had more or less said there is nothing they can do and we should prepare ourselves for the worst as dad is deteriorating quickly. He said we won't be able to manage caring for him at home. I am heartbroken. It's as though someone has thrown a grenade into our lives and nothing is recognisable anymore. Six months ago we were all going out for dinner together, going to the theatre, just doing normal family things. Now we spend our time in his bedroom trying to snatch snippets of some form of conversation with him in between sleep. Is your mum still able to live at home, Ange? How is she doing and how are you all coping? x

    Amy, your posts have managed to make me laugh despite all the sadness about you and your mum's situation. Sometimes you have to find humour in dark places or the bleakness would just see you off. Maybe I too should find some paperwork to massacre - is it therapeutic? We do have a saying here in the UK, but it's not as polite as yours. Don't let the *******s get you down - the '*******s' in this case being the Lewy bodies in dad's brain x
     
  16. angecmc

    angecmc Registered User

    Dec 25, 2012
    2,109
    hertfordshire
    So sorry to hear about your Dad Victoria, we cared at home for my Mum for about 7 years but she has now been in her Care home for nearly 3 years ad it became to hard to look after her. She has good and bad days, mainly bad now and she has lost so much weight in the last three months so things are not too good. We have weeks when we are sure we will be told to expect the worse, but then she picks up again, so as I said before totally unpredictable. My Mum sometimes surprises us, most of the time she doesn't know who I am but only the other day she asked where my husband was using his name, I was gobsmacked! She also still very occasionally still shows signs of her fantastic sense of humour. All I can say is hold on and enjoy any good days you may get, oh and if your dad liked music it may help to calm him, it does my Mum and she remembers words to songs even though most of her speech is gone. Sending you hugs xx


    Ange
     
  17. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    Hi Ange, I can't believe how cruel this disease is. Your mum sounds as though she is at a much later stage than my dad and my heart goes out to you having had to watch this happen to her. Does she seem settled at the home despite the bad days, or is she agitated and anxious? We're all finding the anxiety really difficult, obviously most of all for my dad. He keeps talking about suicide and we try to distract him by talking about something else but he ends up back there and sometimes I have to leave the room because I don't want to cry in front of him. Before the diagnosis (before anyone had mentioned Lewy Bodies) a doctor asked my dad why he was worried about dying and my dad responded with, 'I'm not worried about dying - I'm worried about living the rest of my life like this'. He keeps saying that he doesn't want years of this ahead (I'm sorry if this sounds rude, as your mum has obviously suffered for a long time with this. I'm just relating how my dad is feeling and what he tells us, and I can't imagine how horrible it must be for someone to realise their mind is slowly leaving them and there's nothing anyone can do). Today I have suggested reading to him or playing cards - he doesn't want to do either. His interest in everything has gone. Was this the same for your mum? Hugs back xx
     
  18. angecmc

    angecmc Registered User

    Dec 25, 2012
    2,109
    hertfordshire
    Hi, we usually find Mum is anxious and agitated at least three days out of seven most weeks, we occasionally get a couple of weeks when she seems quite fine. When she is anxious and agitated her legs and hands shake uncontrollably and she gets aggressive and angry during these times. My Mum is often depressed, in the early days she used to admit to this, I think it was when she used to have lucid moments and as you say it must be horrible to realise that your mind is going. When she is sad, I feel she is having lucid moments, it's harder to tell now because her speech is not good. Mum often used to say in the early days if she had a gun she would shoot herself, I guess that's how your poor Dad feels. Please believe though it's not all doom and gloom along our journey we have had and still get some really good visits with Mum and it's hard to believe but my Mums wicked sense of humour is still occasionally there. With the correct medication and time, hopefully this will be the same for your Dad. My Mum lost interest in everything too, she used to be an avid reader and was a great artist, but it is all gone now and has been for a number of years, she no longer watches TV, but still seems to like a bit of music and will sing strangely, all the words to the old songs. Take care xx

    Ange
     
  19. TherapyRunner

    TherapyRunner Registered User

    Feb 5, 2016
    3
    Hi Victoria

    I've not been on TP long either, like your Dad, mine has Lewy Body, he's 69 and was diagnosed about 2 years ago, but has shown signs got a lot longer. He has phases where he sleeps a lot and during these his personal hygiene and general level of apathy can be pretty bad, he's had a few major episodes of hallucinations that resulted in hospital treatment, and has been in a care home for approx the last 12 months.

    Many of the issues you mention have cropped up over the last few years, I can't say I've got all the answers, or that it gets any easier, having been through a particularly difficult time recently, but I will agree with many of the others, remember not to be so hard on yourself, or other family members, you all, I'm sure do the best you can, TP is a really good place for asking question, venting and sharing frustrations. No one judges you here, we know that we all do the best we care, we all juggle every day life and our many daily challenges, some of the most important things I've learnt in the last few weeks are that you aren't alone, and it's important to keep on top of your mental health, as well as your dad's.

    Dad was having a bad few days on my last visit and communication was really difficult, rather than leave and miss out on time with him, I picked up a book from the quiet area - Wind in the Willows, I read several chapters before he dozed off, it felt like a complete role reversal, it's a book he's read to me many times as a child, but I was able to take comfort from the slight smile on his sometimes expressionless face.

    Take care, and remember to be kind to yourself, as well as others xx
     
  20. Northern75

    Northern75 Registered User

    Feb 7, 2016
    49
    Hi all,

    Hope everyone's ok. Been a bit slow to respond as it's been a really busy week and I have spent the majority of it with dad. I have calmed down a bit. Unfortunately, this might be because I've started to accept that things are as they are and that this can't be reversed. What a horrible realisation that has been. TherapyRunner, you must have noticed the tension in my posts (not difficult to spot, I'd imagine) and I'm ashamed of the way I've vented my frustrations. I have been very frustrated with everyone and everything. Ange, my dad has also made the 'if I had a gun' comment. It is really hard to hear and so upsetting to see him like this. I'm glad it's not all doom and gloom and you get to see your mum as she once was. We are all really trying to keep dad occupied with reading to him, doing crosswords together, going for short drives in the car, but he's very resistant and keeps saying he doesn't want to do anything. He told me that if he wants to just sit and stare I should leave him do it

    xx
     

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