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 My dad, Dennis 
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Joined: Sat Feb 07, 2009 12:13 pm
Posts: 6
Location: Southend on Sea, Essex United Kingdom
Post My dad, Dennis
Hi all,

Dad was originally diagnosed with psychosis as he was having hallucinations and after having a brain scan that showed up no sign of parkinsons or dementia, the psychiatrist believed that giving him haliperidol would help him. Almost immediately this had a very bad effect on him. He started dribbling and became very stiff at times, started shuffling around and became almost comatose at times. Mum had a nurse coming in a couple of times a week by this stage and she could see that dad was worsening and wanted him to go to hospital so they could manage his medicine as it would be too dangerous to change his medicine while he was at home in case of adverse reactions. By this time he was getting up at all times in the night, was pulling the locks of the doors in order to get out (mum couldn't let him as he would have put himself into too much danger, the last time he went out alone, he ended up in an ambulance as he fell over in the street).

Anyway, long story short, dad got so bad we had to call ambulance and after 9 hours in A&E he was admitted to the Mental Health Unit at our local hospital. The ward was for older people with similar problems, male and female. This was a week before Christmas and he is still there. It isn't a very nice place for him to be. We've had to deal with violent patients who have hit dad, dad falling over a lot and not having any staff witness it, meals that he hasn't been able to eat because staff can't always be there to help him - it's been heartbreaking. We hate leaving him there.

Anyway, long story short (again), he has been taken off the haliperidol and had another scan a DAT scan. Lewy Bodies show up on this one and did and so he has been diagnosed. Mum wants to get him home asap but they want to see how he copes in different surroundings and sent him to a day care centre yesterday. When I saw him last night he seemed so tired and was crying a bit. He's so confused. He talks about such random subjects and sometimes knows who I am and sometimes thinks I'm my mum. He never remembers who's visited him and often talks about trips he's been on but we know he hasn't. He told us he was in Hong Kong the other morning! And there is often a big dog or a frog or a small child in the room with us. His big worry is money and wanting to resign from his job. He's been retired for over 20 years!

Sorry this is so long but if anyone else has a similar experience it would be nice to hear. What is so annoying is that in all the time dad has been in hospital not one doctor, nurse or member of staff has given mum so much as a leaflet explaining dementia, we have had to look it all up ourselves on the internet. This website has been a wonderful source of information and so very helpful. Thanks. Kim

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Kim


Wed Mar 04, 2009 9:09 am
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Joined: Fri May 11, 2007 12:54 pm
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Dear Kim,

So sorry to hear of your father's diagnosis, but you are in the right place for great advice, real information, and unflagging support. Listen to everyone's experiences because they know what you are going through. Read through the rest of this site, print out information, and make yourself the expert. Unfortunately you are going through the same thing many of us have when the medical field sees dementia. Many seem to just lump our loved ones under this diagnosis and forget about them. It's not fair and they deserve better.

Keep up the good work and you are in my thoughts and prayers.

Joyce K


Wed Mar 04, 2009 10:33 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Dear Kim,
Welcome to the LBDA forums and I am glad you found the site, there is so much information here and you are welcome to jump in with any questions or comments, I am sorry for all that the family is going through, go tot he LBDA link is below my signature and you will also find a great amount of infomation and it can be copied for your own use, your best defense is self education and your father now needs a strong advocate!

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Irene Selak


Wed Mar 04, 2009 11:27 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Kim,

As you said, the LBDA has great materials for those dealing with LBD -- both families and medical professionals.

Haldol has been a problem for many, and we've heard many sad stories here about irreversible declines after taking antipsychotics. I'd suggest you read the first page of posts in each of the areas of the Forum.

I hope your father is able to go home soon.

Good luck,
Robin


Wed Mar 04, 2009 11:35 am
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Joined: Sat Feb 07, 2009 12:13 pm
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Location: Southend on Sea, Essex United Kingdom
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The hardest thing for me is seeing him physically decline. His shoulders are very rounded and his head is always down and we are constantly trying to get him to look up. He has lost a lot of weight in hospital too. I think they are looking to get him home as soon as possible. We'll find out later today probably but I am worried about how my mum will cope when he does come home. I know the authorities will put in a care plan for them which will mean someone coming in three times a day the nurse said. But what do they do. My mum is adamant that she can deal with it all herself. Things like changing him, feeding him, getting him to bed etc, but I don't think she realises that she will need a break too. I'm 20 miles away with a family and drive to the hospital every other day at the moment. My sister is nearer but she too has family. It's hard to split yourself between the two. I'm sure you all have similar problems.

Also, dad seems to be in denial that there is a problem. This is when he does talk normally. He says he doesn't know what all the fuss is about and they should just leave him alone. I mean, do we tell him that he has dementia? I don't think anyone else has, not directly I mean. What do you say to convince them that being in hospital is for the best, especially now that dad's had all the tests. He sometimes thinks that the hospital is a care home and then sometimes he says to me "come on, Kim, take me back to your place". What can I say?

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Kim


Wed Mar 04, 2009 12:11 pm
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Joined: Fri Jan 23, 2009 11:46 pm
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Location: East Yorkshire, UK
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Hi Kim, My husband John was diagnosed with LBD last oct age 44. We live in East Yorkshire and the help we have been given is wonderful. We get Direct payments of £350 a week to pay for 35 hrs care a week (5Hrs a day) we have had a new extention (bedroom and wetroom) with the aid of a £30,000 grant. your OT will sort this out for you. John also goes to the Dove house hospice on a Thursday as they have a therapies centre. Please speak with your social worker and ask them what help is available to you,(please take any that is offered, your mum will need it). Good luck and god bless. Thinking of you and your parents at this very difficult time. Jane xx


Wed Mar 04, 2009 7:18 pm
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Joined: Sat Jan 17, 2009 1:27 pm
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Location: Maryland
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Hi Kim,
I too had a similar situation with a bad hospital. My 59 year old sister was born with brain damage and has an inoperable brain tumor. We took her to the ER last Aug.because of the hallucinations, they were bloody and disturbing and she was acting out agressively towards my 84 yr old mom whom she lives with. We thought mom was in danger. The hospital (Social Workers) believed my sister when she said mom was abusing her when in reality it was the opposite. No one wanted to deal with a retarded person. They released her in less than 48 hours and the Social Worker on the psych ward told us that there was no harm in her "stories" because its the same as a child believing in Santa Clause and no matter what they did she would still be retarded. Talk about anger. We even called adult protection Services (for mom) and our Special Needs Lawyer who represents my sister and now my mother as well. Hospital was not happy with us.No one could help us. We even asked that she be transferred to Hopkins and the Social Worker LAUGHED in our face! However just before we left they made her take Abilify and gave her an RX I assume to cover their A--. This drug calmed the goriness of her hallucinations but has ruined her with parkinson syndrom. We drove her to the ER at Johns Hopkins Research Hospital a few weeks later and refused to leave until a decent Dr would listen to us. She was accepted by the residence Dr in Neurology and was diagnosed with Seizures and LBD. I personally dislike Social Workers. Have been dealing with them my whole life.
My one word of advice - look up everything on the internet, read everything, read these stories on this forum and please look up any drug that is prescribed BEFORE he swallows one. Also - my sister's head also hangs now, we thought it was the Valproic Acid but she told my mom just the other day that when she holds it up it makes her dizzy and off balance. I thought this was interesting. Maybe its the same for your LO too. I cannot tell you the hours I have spent reading this forum and what I have learned. I feel better too. Be careful and take care of yourself. I almost ended up in the hospital myself last fall due to stress of LBD.
Oh and one more thing get the legal paper work done if you have not already makes a BIG difference when talking to Dr.'s.
Good luck to you and yours
Tricia


Wed Mar 04, 2009 8:45 pm
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Joined: Thu Feb 19, 2009 12:45 am
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Location: St.Paul
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Your stories are truly heartbreaking. One after the other - it goes on and on. I sometimes wonder if LBD is so common how come no one knows about it in the medical community? :(
My LO is stooped way over. I always remind him to stand up straight. I am only 5'1" tall and he is alot shorter than I am now. The bones in his shoulders protrude skeletal like. Frightening for the kids to see as it bothers them to see their dad deteriorating so fast. He does use a cane for walking around the house. When outside he uses cane and hangs on to me. Our steps are baby like and takes forever to get to where we are headed. He fell last July and was taken in ambulance to hospital. They couldn't find anything wrong. He was in tremendous pain and no one could touch him as he hurt everywhere. They sent him home :shock: and my son came over and we got him in the house. For 4 days he couldn't move around. Went to the doctor and I made them put him in a care facility for rehab as I couldn't move him. He was there for two weeks and it was a blooming nightmare. He hallucinated terribly all the time, cried, wouldn't eat, thought the male aides were molesting him because they went in the bathroom with him to help. When I brought him home he has steadily declined since. Has a few spurts of good days but those are far and few. Mostly angry, delusional, mumbles and talks to whomever, incontinent most days now and can barely feed himself. He always thinks I am having an affair and is very mean when I get home from work - even though most days he is there with me. LBD is horrible and there is no way your mother can take care of him herself without someone coming around to help. We all find out we are not superhuman and can go it alone. All our backs are shot from the lifting we shouldn't do, stress and emotional toll it takes to get through every day. Every night I lay in bed with a heating pad on my back and neck and get my laptop out and read the new posts and go over the old ones. I am so grateful to have found this site - it is my saviour. For too many nights I lay and cried thinking I was alone with my misery. Just knowing others are going through what I am doesn't make me happy but just not so isolated.
I will pray for you and all the others like us.
Connie

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In & out of stage 4.


Thu Mar 05, 2009 1:08 am
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Location: Henderson, Nv.
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Hello Kim,

Hope this site is helping you as it has helped so many of us.

Connies post was so incredibly specific to the reality of what we are all going through together. Sad but true. The last few lines were especially poignant as I do exactly the same thing. ..clean up, get the jammies on, crawl into bed with the laptop and read the posts, add to them and then search the net for any new information. A nice prayer for all of us and our LOs and then much needed sleep. Or falling asleep only to wake up at 3 in the morning to find the computer and tv still on.
Your story is so sad and I hope you find the strength and courage to get through it all...and please do join in our posts. :)

Dianne

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Dianne C.


Thu Mar 05, 2009 4:48 am
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Joined: Sat Feb 07, 2009 12:13 pm
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Location: Southend on Sea, Essex United Kingdom
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Thank you all so much for your replies. It is comforting to know that others are there, having gone through the same difficulties or dealing with the same and I really appreciate all your advice, even though, as I think it's been said before, that it is a real tragedy that we're all on this site in the first place.

I will definitely make sure I research any drug my dad is being offered. I spoke to my mum last night and she said the doctor wants to start him on a drug for the Lewy Body but she couldn't remember what it was called! I'm sure when I saw doc last time she said that it would be Exelon. Does anyone have any knowledge of this one and it's side effects as I am sure there are bound to more side effects than good, as seems to be the case with a lot of dementia drugs. Is this because there has been so little research? Or am I just too new to it all? I will make sure mum also takes any help offered. She has a bad back already from trying to lift dad off the floor - ironically this was when he was in hospital and no one could find a member of staff to help! They say they can't lift him anyway because of "health and safety" and have to give him a chair to lift himself up on to, or they get the hoist (degrading).

Anyway, have to go to work now. Be back later.

Lots of love

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Kim


Thu Mar 05, 2009 4:59 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Kim,
Please read Boeve's Continuum paper; you can find it on lbda.org. And you can do a search here of past posts containing the word Exelon. It's a standard drug given to those with LBD. There are side effects to be aware of. You can educate yourself about any medication by going to a website such as rxlist.com or drugs.com.
Robin


Thu Mar 05, 2009 2:54 pm
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Location: Southend on Sea, Essex United Kingdom
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Thanks Robin

Just got back from the hospital and found out they've already started dad on exelon. Mum was only informed today. Anyway, let's hope it will give him a bit more quality of life.

He did make me smile tonight tho, he started talking about playing cards and told me all the different cards (hearts, clubs etc) then I said show me your poker face then dad and he pulled such a funny face and then burst out laughing. Lovely! Big kiss and lots of love when I left him too. Will sleep well tonight.

Take care all.

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Kim


Thu Mar 05, 2009 4:39 pm
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Joined: Sat Feb 07, 2009 12:13 pm
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Location: Southend on Sea, Essex United Kingdom
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I'm not sure where to post this, so I'm just putting it under here for now. We have a problem with dad, so far as his treatment at the hospital is concerned.

His doc wants to send him home from the hospital next Wed for 1 hour so they can assess what needs he will have at home and the Occupational Therapist will do this. Our major concern is this: dad has been in hospital for three months and is still is a state of confusion about it all. Last time I went in to see him and we were in the day room, he said to me "you know me and mum nearly bought this place". He's also said to us "don't you put me in a home". Well my worry is that it is absolutely cruel and heartless to send him home for 1 hour and then make him come back to the hospital. What on earth is going to go on in his mind? What will he think of us? It's going to be so upsetting for my mum.

Mum saw his doc on Wed and argued this case and they said that they need to see if he will co-operate because if he doesn't - wait for it - they will have to think about putting him in a home. Mum wasn't ready for that. She said that that was the last thing she wanted to do and they should at least give her a chance to look after him at home first. They talked her into agreeing to the 1 hour visit, which we're still not happy about. Also, as you know with Lewy's, one day he could be shuffling along fine and then the next minute he could be as stiff as a board. How the hell can they assess someone in that condition and for 1 hour!

Then, yesterday mum and sis get to the hospital to be told that they were moving dad to another hospital that is for more long term patients and that is about 15 miles away from where he is now! They weren't even going to tell mum until he'd gone. They were going to call her. My sister, thank God, stood her ground and said that there was no way she was going to let dad go. It would completely upset him. Especially as they were sending him home for this 1 hour assessment next week. Luckily the Nurse in charge overruled the doc and he has stayed. I'm going to see him tonight. Mum and sis are there now, but we are so angry about all this. I just don't know what goes on in their minds.

My poor mum is so upset by all this, my sister and I are angry. It seems all we've done since dad got into hospital is complain about his treatment. Oh, he's also now got a water infection. A month ago, the ward came down with a sickness bug. The other day dad was standing by a door and a member of staff whacked it open and banged his head. Took the doc over an hour to come and see him.

Sorry to rant, but just had to get it off my chest.

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Kim


Fri Mar 13, 2009 9:28 am
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Location: SF Bay Area (Northern CA)
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Sounds like there needs to be a family meeting with the person in charge of your father's care...and perhaps a social worker at the hospital. Can you ask at the hospital to see a social worker or a patient representative or someone like that who can possibly help?

And, if this were in the US, I would advise you to put this all in writing, with the demand that you do not want your father moved without permission from your mother.


Fri Mar 13, 2009 1:13 pm
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Joined: Mon Mar 12, 2007 8:29 am
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Hello Kim

You need to get your Dad out of the hospital and home to his loving family ASAP. They cannot hold him against your or your Mothers will, they also cannot move a dementia patient without specifically contacting their carer...I'm positive this would be against the Patient Directive...it would be like moving a small child! The system in the country drives me to distraction!

Unfortunately, as has been indicated in the British media of late, the untrained medical profession (and with that I mean untrained in dementia) in this country, group all dementia cases into the same category and refuse point blank to listen to reason.

Get him home and get the social workers to come to your family home to assess his needs. Once home you can still battle with them for whatever your Dad needs whether it's help with day to day tasks such as dressing, showering or whether he needs to go to a day care facility. Day care is usually called upon if the carer (your Mum) needs it in order for her to get a break or go to work. Your OT should be able to point you in the right direction.

I don't remember all the different titles of the people who should be involved in the assessments but they will come to the house to assess wether it's suitable to his needs. IMHO home is where any dementia sufferer should be if home meets the patients needs and the family can cope/accommodate them.

It's up to his family what he needs not the hospital and they cannot insist on him going into residential care unless he's a danger to others.

With kind regards
Dawn


Wed Mar 18, 2009 10:55 am
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