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 my mom 72, and I, 38. 
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Joined: Thu Jul 11, 2013 6:36 pm
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Post my mom 72, and I, 38.
hello allies, i need to talk, i'm most alone in this matter.
We live in Greece. but my mum is an Australian (pure). the cultural difference over her lifetime in this mad country made her close in and shy away from the rude greeks and finally, my dad who was the greek, he passed away in 2009, and by now, she finally lost it. she never took to electronics, directions, reading maps was never a strong point. she chose not to learn Greek so life went over her head and she didnt take to the mentality here. They were happy together. But she was stubborn in her ways. i wonder if her current decline reflects her life long characteristics i just mentioned.
As my dad passed the only one that could take the reigns was me. So i came back from abroad where i was working to care for him, then, now, her. For ages we've been trying to find whats wrong as shes been depressed beyond understanding, no interest in hobbies or anything. she took to asking me for everything and is fully dependent. its been in the last six months that matters moved swiftly. My dog died as well in April and that threw her, she lost her best pal on top.
Hallucinations are daily. cats dogs arabs in the corner of the house, the 3rd world war that we are in and all sorts. which is amusing but you try landing someone who is convinced of what they are experiencing. At least its more exciting than real life for her. - she can hardly write, coordinations have gone hay wire. managing her meds is a no-no. in all honesty if it wasnt for me to care for the whole bang lot she should normally be in a care home. Who wants to be in a care home in Greece. no u dont want to do that to your mum. not unless she reaches that level where its all gone. For now shes still having her own shower and dressing.
I wonder why she degenerated so fast since she started taking Madopar(levodopa). Doc says it's parkinsonism with lewy bodies. in other words dementia. Her sleep cycle recently begun to go mad. waking up all night wasnt letting me sleep either. continual talking nervousness. shes now started taking half a Seroquel at night and this for now, helps.
All in all i am exhausted flat out and like lifeless. It's faded in the background, facebook reminds me of my interests and friends. but i have no time for them and they dont understand the nature of such life changes. and they arent really sister like friends anyway. - I need to find a carer. its almost impossible to find one that speaks fluently english someone that can pick her spirits up a little. this phase is awful as shes aware of whats going on i cant lump her with just anyone. And i freak out at the idea that a stranger will be living in my home nosing around our stuff and everything.
I feel guilty, i didnt know what was going on and having all my dads business and beurocracy to manage, having no previous experience with the 'grown ups world' ( when i was 33) i often lost my temper. rage and anger overflowed while i was and am so frustrated and the fact that my 30's are put on the back burner in order to help her cope. i'm missing out on my life here. i feel terrible for saying mean things to my mum we always have a hug after and i say sorry. But she never leaves me alone! to gather my thoughts and focus. worst on top is that she doesnt acknowledge my reasons fro being angry. As if i don't have a life of my own interests, activities, wishes and desires. Nowdays im much more understanding and i try my best to control my temper tantrums. She may not be able to put up a fight but troubles will kick in at the very slight rising of my voice so im careful, otherwise there's arabs and nazis looming around the house. she's found the best way to pay me back. ( no offense to any arabs here guys, my mum is a petite fragile scared lady who thinks the world is coming to an end). It may well be too but not this week. yesterday she was convinced that the opposite building currently being renovated with scaffolding is not that but that they are spraying a green deadly substance that she could actually smell. - Madness in all its glory. - im going nuts too.
Getting onto reality, life and death is all in the play. i turn my heart into stone to manage the underlying truth which is drenching me in sadness. Losing parents at this age was not what i expected. not what i was told. i havent had time to morn for my dad now this.
I dont know what stage she's in, how the pace goes. Docs wont tell you such things. they arent gods. yesterday was the first time she told me that she had a little incontinence, just a few drops she said. I dont want her to become a dribbling vegetable. i cant stop myself from thinking about the end. - sorry to make u all tired if u had the patience to read me here i truly thank you. - Im terribly alone in all this as i'm a single child no cousins or close family to help share the burden the worry and sadness. so i write to people whom i think may be going through this as well. At least theres no physical pain in all of this and the person slides inside their own world. But wat about the carers, we who realize this degeneration and must be strong and save our energy to manage it. i feel im a patient too.

Sincerely,
isabelle.


Sun Jul 14, 2013 5:23 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: my mom 72, and I, 38.
Yes, we are patients, too! Caring for a Lewy loved one is wearing on the body, mind and spirit. I'm so sorry you have to face it at this time of your life [although there is no good time in life to face it].

I was struck by your comment: At least its more exciting than real life for her. It's just the way I think about my husband! He is stuck in a nearly motionless existence, bed and wheelchair, unable to read or even watch TV as he is unable to absorb his environment. But his delusional life appears to be captivating and exciting. Maybe there is a purpose to the delusions and hallucinations.

Welcome to the forum and thank you so much for sharing what is clearly a painful experience--one with which most of us here are all too familiar. God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Jul 14, 2013 10:01 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: my mom 72, and I, 38.
Hi Isabelle - it is absolutely ok to feel like you feel. It is overwhelming, exhausting, frustrating, painful, not fair, etc. But it is what it is and trying to figure out a way to make it less painful for your mom AND you may be where you need to focus. You didn't say where your home is - do you live in Australia? Would it be best to take your mom back there? Would it be easier to find caregivers and nicer care homes in Australia than Greece?
Have you tried placing ads for English-speaking caregivers? Asking other English-speaking folks who live near her for recommendations?
Is there a way for you to make some friends there who can help, if only to be a shoulder to cry on?
We are all here to support one another, and I know how important that was, especially when my dad had his huge, overnight decline and went from living at home to being hospitalized with no ability to perform any ADLs at all. I live 500 mi. from his home, where I grew up. Looking back on it, I wish I'd moved him to near my house, even though I wasn't dealing with anything like language barriers, which must be overwhelming!
Come back as often as you need. And don't worry about anything. We've all either "been there, done that" or we are currently going through very similar experiences. I'd recommend you read as much as you can on here and other LBD resources. Big hug to you, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Jul 15, 2013 7:29 am
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Joined: Fri Jun 19, 2009 11:23 am
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Post Re: my mom 72, and I, 38.
Isabelle, believe me you are not alone. Reading your letter I am thinking all the time, "been there done that" Almost seems like a crazy way to live and I constantly keep reminding myself to "stay calm, stay calm". It seems like if I lose it, he will be way more confused. The hardest part for me is having outside interests because he does not tolerate strangers in our house for me to leave. I do try to get outside to garden etc. The only help I get is our daughter, whom he adores and she understands him and knows how to interact. However its not fair to only depend on her as she has a job and family. People used to say "take care of yourself" At times I wanted to scream "I don't know how". Now after five years I have accepted this as my husband of fifty-five years and it is what it is. Oh yes, sometimes I look at him and wonder where the strong young man went that I married but I have to say, my love for him is deeper now than it was when we married fifty-five years ago. Keep coming to the forum. There will always be somebody that understands and relates to what you are saying.
Mary


Mon Jul 15, 2013 12:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: my mom 72, and I, 38.
Mary, my husband also refused to have a caregiver come to the house so I could get out. It was frustrating but he actually became violent when he heard me arrange an interview. However, I eventually decided I would do it, anyway, and hired a 30-ish male CNA from a reputable agency to stay with him for four hours twice a week. Oh, the exhilaration I felt going to Walmart by myself and meeting a friend for a cup of coffee! In nice weather I did some hiking. And he was fine with the caregiver--they mostly watched soccer on TV. He may not have been so accommodating with a female caregiver.

My husband has now been in a nursing facility for two and a half years! It just doesn't seem possible.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jul 15, 2013 12:32 pm
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Joined: Fri Jun 19, 2009 11:23 am
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Post Re: my mom 72, and I, 38.
Pat
I think I may have to do that also. I had the case worker from our local senior center come in and talk to me about options. After I talked with her, I then talked with my daughter and she said she didn't think her Dad (my hubby) would tolerate anyone else but I just might do as you suggest anyway. He seems to relate better to women. He always has. Sometimes he makes me laugh because he will tell stories that I know are not true. Mostly I don't think I want to go through an agency. I don't know if I'm ready for people to come in and asking a lot of questions about finances etc. I'll figure it out because I know I need to.
Mary


Mon Jul 15, 2013 12:59 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: my mom 72, and I, 38.
I wasn't asked questions about finances. We were just told it would cost $22/hour and we got a bill once a month. We did have to sign an agreement that we would not hire an agency employee outside of the agency.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jul 15, 2013 2:24 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: my mom 72, and I, 38.
Mary - for the few weeks that my dad was home and I hired CGs to come in a few hours a day to take care of him, we were not asked any financial or other personal questions either. I just told them what my dad needed, they gave other suggestions as to how they could help and how much it cost per hour. Simple, and the care was fabulous. He just loved having these folks come in and spend a few hours twice a day with him. Prior to my hiring them he had temper tantrums even thinking about it and refused to talk about it but I hired them anyway, they sent a monthly bill to me and I paid it from his check book. Unfortunately that situation didn't last too long because of his overnight catastrophic decline.

It can be like dealing with a stubborn little kid who doesn't want to do something. You just do what you need to do and I'll bet your LO will be fine with a CG after you are out of the house. It's worth a try, anyway, and CGs just cannot stay healthy and sane if they are like prisoners taking care of someone else 24/7. Good luck all! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Jul 15, 2013 8:48 pm
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Location: WA
Post Re: my mom 72, and I, 38.
That's right, Lynn! Remember how our kids would howl when we left them with a sitter but as soon as we were out the door, they would quiet down. :lol:

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jul 15, 2013 9:47 pm
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Joined: Sat May 25, 2013 3:53 pm
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Post Re: my mom 72, and I, 38.
Welcome to the forum Isabelle! Come here and share what's happening regularly! Writing down what you're going through and feeling is a great way to deal with it! And getting away from the situation regularly is also a requirement or you will burn out! Neither my mother or my father wanted a caregiver around - but when we had a crisis (which it always seems to take before a change can happen!) and we got a caregiver in, my mom loved it. The one on one attention from someone who isn't emotionally tied (you) was fantastic. I would try to make it happen at least on a temporary basis and see how your mom responds once someone besides you is there!

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Wed Jul 17, 2013 8:30 pm
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Post Re: my mom 72, and I, 38.
Caregiver burnout is a very real thing. I took a course for CGs when my dad first became very ill and learned a lot about how to try to maintain your own health while being a CG for someone else. One thing that really stuck with me was that stress from CGing or whatever else, changes the human body at the CELLULAR LEVEL and those changes can remain for years after your LO is no longer around.

A very close friend of mine who has never been sick in the 20 yr. I've known her has been quite ill for about 2 weeks. She suddenly became the CG of her 92 yr. old dad and a 58 yr. old paranoid schizophrenic brother in Dec. The last 8 months have been absolute he!! for her and she isn't even doing the "hands on" caregiving. But the stress of taking over finances, having to get 2 houses cleaned out before they could be sold, moving her dad to an ALF, getting the brother on Medicaid and into a SNF, selling 7 vehicles, and dealing with all the other medical and property matters have put her right over the edge. And, now there is no money to pay the ALF until the 2 properties are sold, and they are not "primo" properties.

So, all you CGs out there, get help and get away from the duties long enough to keep yourself healthy and sane. It is a very, very difficult and demanding job and doing it alone is likely to compromise your own health. Treat yourself to time alone, a massage, a movie, something you don't ordinarily take the time to do for yourself. And get some sleep! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Jul 17, 2013 8:40 pm
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Joined: Thu Jul 11, 2013 6:36 pm
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Post Re: my mom 72, and I, 38.
hello... thank you for responding to me its nice to read from others that know what im going through. - I have tried to find a CG, and i did shes only been home three times for 8hrs each time. My mum says 'shes nice but not talkative enough' 'shes a bit thick' (haha). What can i say im never going to find a CG that can talk to her on books and film and the royal baby. So my mum is bored. and CG is kind of basic if you know what i mean. Anyway.
My reason to talk to you today is to ask you about this: Do your loved ones suffer hallucinations at night? My mum every night has these tremendously horrid vivid dreams bordering on hallucinations or is it the other way round. Last night these faces of kids were after her wanting her blood and to eat her. Every night im woken up between 1:30&3:30. Two nights ago god knows where her mind was and in the dark of night i hear this huge banging crash. i jump out of bed shes standing behind the secreter desk in her room that shes trying to go somewhere and so she pushed it, it was tilted and all the boxes of stuff papers all fell out in a monumental noise. - Ive recently started giving her Exelon 1.5mg. One in the morning one at night. she takes madopar(dopamine) and if i can get her to take Circadin a sleeping tablet with melatonin but she often refuses it as she blames that for her hallucinations at night. Any natural tricks to help prevent these mares? How do you cope with those? Because the following day she's then fixated on what she experienced as true.
Im very angry at her as she bugs me each morning at around 7 with some dumb questions hovers over my head regardless of me saying please go away im sleeping. she will ask me so many times that in the end not only there's no sleep left but i lose my top completely. Mind you shes not 'gone' so much yet that she doesnt understand. Surely she can get it that waking me up in an abusive way like this puts a very bad start to the day. Especially as im robbed from my night sleep too. Let alone my life altogether - My mum was never particularly active. its always been the case of 'I wish' rather than 'how to'. She never saw herself as the one responsible for her life. Im not surprised shes gone this way.
I have my moments of 'feelings for her and i freak out at the fact that i may lose her but honestly im also hoping for it too as i feel so cornered and desperate. September is here i need to work to live to talk about making my own family with my boyfriend. Ive had enough. In the last 5 years i've put to rest my father, my uncle, my aunt and my dog. Im so familiar and hardened by it as a mechanism of defence. And ok my uncle i never had a relationship with, my aunty i cared for but as theyd all gone it was either her or my mum i would care for. My aunt was kidnaped for two months by her own house cleaner and held from me for ransom. 2000euros i paid to get her back. Long story. I should write a book. This is what can happen when people sniff out an opportunity when they see an end approaching. So i was the only one in the family to manage this. I realize how much of a chauvinistic country Greece is, in every way they tried to fiddle with me as they think the girly will be a pushover. As for losing my Dad.. that was is my saddest loss. If he was here none of this woudl have happened. Is all this going to ever change i wonder. i guess not. am i selfish? i am. My mum reminded me the other day that if it wasnt for her i wouldn't be here.


Sat Aug 31, 2013 3:38 am
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Post Re: my mom 72, and I, 38.
HI Isabelle,
So sorry to read your story - you have a very difficult situation! And so many things to deal with aside from just the health issues.

It sounds as if your mother has benefited from the very low dose of seroquel (half a tablet = 12.5 mg?) at night. You might discuss a couple of things with your doctor. First, the half-life is such that it will have little effect by morning, hence waking you up and so on. I'd think that she might do better on it both morning and evening. And that is a very, very low dosage, and sometimes it needs to be increased gradually. If half a tablet twice a day does not reduce her anxiety, delusions and hallucinations, and help with sleep disturbance, to a manageable level, you could increase to 25 mg twice a day (one pill, if you are using the standard size.)

Some doctors will fret a little about seroquel because the FDA came out a year or two ago with a recommendation against giving it to the elderly because of increased risk of heart attack. I pulled the medical literature, and the documented risk is for much, much higher doses (say 300 mg) and is still not that great, and over a long term (5 years). For a very low dose, the risk, if any, would be quite small. My feeling was that my mother's suffering from her delusions and sleep disturbances and anxiety far outweighed any tiny, hypothetical risk 5 years from now.

Good luck, hope you get some help, and do know that many many people here will be thinking of you and understanding what you are going through.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sat Aug 31, 2013 9:40 am
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Post Re: my mom 72, and I, 38.
No Isabelle, you are not being selfish. In fact, it sounds like you are such a giver that you haven't allowed much time for yourself (at least for a few years).
Do they have assisted living facilities there? Can you get your mom into one? As you know, lack of sleep, especially when it goes on for weeks and months is not healthy. You have a right to be able to maintain your own health (mental AND physical) and it doesn't sound like you are able to do that with your current situation. Being up all night, then awakened early in the morning when you finally do get a few hours' sleep is not going to be healthy for you in the longrun. Can you get an aid to come in and spend the night and then lock yourself away somewhere quiet so you can get some sleep? If you get sick from the stress and lack of sleep, what will happen to your mom?
If you aren't functioning well, you can't continue to do all that caregiving for someone else. I hope you can find some alternatives that allow you to be able to be healthy and have a life. Wouldn't your parents have wanted you to have a long, healthy, happy life back when they were healthy? That isn't too much to ask. Take care, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Sep 02, 2013 12:24 pm
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Joined: Sat May 25, 2013 3:53 pm
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Post Re: my mom 72, and I, 38.
Hi Isabelle,
I can tell you that my Dad was about at the end of his rope living with my mother and the hallucinations. Luckily most of hers were friendly ones, kids, a family sleeping in the living room, but then there were the bugs. That about drove us crazy! My Dad was so tired getting up in the middle of the night - so he was grouchy all day. When we finally got a live-in caregiver the change was amazing. My mom was happy someone would listen to her and my Dad was happy he didn't have to! If there's anyway to make that happen, I'd strongly advise it. Otherwise, you have to find a way to get your sleep or you'll just plain wear out. Hang in there - it's a tough road!!

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Tue Sep 03, 2013 6:49 pm
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