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Posted 10/29/2005 2:37 PM (GMT 0)
Hello everyone.

I am not sure where to start realy. My Sister was diagnosed around the age of 51-52 with an "Alzheimers type Dementia" She is now 55 and definatly getting worse as far as memory,social skills,bathroom habits that sort of thing.

Yesterday while she was sat watching TV,she suddenly went into a type of siezure,head back,eyes rolling and her chin was sort of trembling. She was taken to hospital where after a very brief examination and some questions that for obvious reasons she couldnt answer,she was sent home. We have been told that people with Alzheimers type of problems can be prone to seizure type things but it is not the same as epelepsy(sp)

Last night,she continualy kept on dozing off on the sofa and then waking up again. her daughter put her to bed.

Today....

I had a call a while ago from my neice. She had recieved a call at work from My sisters husband(and a total waste of space in my opinion) aparently he couldnt wake my sister up this morning. Instead of caling someone right there and then,he left her untill 12.30 lunch time and then called my niece(his daughter) at work. She called up NHS direct who said "why didnt he call an ambulance straight away." My niece went home imediatly and my sister had then woken up but was very hot,shaking and crying. One of my other sisters has taken  them up to the hospital again,but what are they going to say? probably the same as yesterday "nothing we can do take her home"
 
My Mother in law had Alzheimers and I didnt see even a hint of the symptoms that my sister is having. my sister started to go down hill a few years ago when she had a virus(I remember she collapsed while on her way to the bathroom) and from then on she was continualy having ear infections and it was also at this time that she started getting her memory problems. I have tried to question my sisters consultant when we go for her reguler apointments about a possable connection with this virus she had a few years ago but I dont get anywhere.
 
Somthing just isnt right somewhere and it isnt me being in denial that my sister has Alzheimers either.
 
What do I do,what can I do?
 
PS,if anyone thinks I am being harsh calling my brother in law a waste of space,if you new him and the way that he behaves towards my sister then you would agree with me.

I have posted this in the hope that someone will be familier with the symptoms that my sister is having and maybe help me to understand what is happening and why the medical people dont seem to be giving us any answers.

Thanks for reading

Sue

Posted 10/29/2005 10:17 PM (GMT 0)
An update....

 
 
Well, after waiting for hours in the Aand E department at the hospital today(There had been a car accident so staff very busy) my sister Stella finaly did get seen by a Doctor and a realy nice nurse. They said that Stella should have had a water sample tested yesterday and they don't know why she hadn't. Anyway, it turns out that she has got a water infection and she has been given antibiotics. They have said that the siezure type symptoms may have been brought on by the infection but they dont know for sure. They said to take her back straight away if she gets the other symptoms of rolling eyes etc again. She also had some blood tests taken and they had the results in about an hour.They said that they were fine. I wasn't there so I am going to ask my neice if one of those tests was to check for B12 levels because I know that Stella has been low on that before,but it seems that the doctors can never make up there minds as to if she needs more B12 injections or not. I am due to go with Stella for her apointment with the consultant that she sees about her dementia on the 22nd November and the nurse suggested that we ask for Stella to have another brain scan,the same as she had in 2001. Does anyone know the name of the brain scan it is similer sounding I think to the ECG that you have to check the heart,but I cant remember the name of it. I will also nag them about the B12.
 
Ok, Stellas husband  He is actuely getting carers alowance for supposedly looking after Stella. I have spoken with the social worker about my concerns that he can not cope with looking after himself let alone Stella(he is an alcoholic) I have told her everything about how he treats Stella,how he shouted at her for blocking the toilet with kitchen paper(she wont put tissue down the toilet now) I have told her how everytime I go to pick up Stella to bring her here for the day she always says "Oh I am glad to get out of there" She says the same to my other sisters when they go to pick her up too.
 
I am just always told that they and the Doctor have made a note of our concerns but there is nothing that they can do unless they see abuse or the result of abuse for themselves. We were promised that although Stella is not too keen on the idea,that they were going to try and encourage her to visit a day centre a couple of days a week. But my niece Marie has said that when the social worker calls around on her thurday afternoon visit(every other week) that still nothing has been done and they havnt even mentioned it to Stellas husband.
 
I will be calling the social worker on Monday morning "again" to see what she has to say about it all.
 
Sorry for waffling

Posted 10/30/2005 10:28 AM (GMT 0)
Hi Bag Lady .........My you do have your hands full ........I was wondering when Stella is at home WHO is in charge of her meds if she has any??? The hubby sounds like a real prize and if he is a boozer than he has no ability to look after others ........I am betting that alot of what was wrong with Stella has to do with the infections .....It is a sad reality what happens to our loved ones behind closed doors..........I do not know if you are talking about an EEG .................she should see a neurololigist or has she ........You sound like you are at aloss and rightly so .......when you do talk to someone who will listen to you TELL them to check for viral infections and the whatnot as she could very well have had this infection since she fell the first time and it is so east to mis DX peeps and say they have alzheimer's when they do not instead of checking into other sources ...we all have some memory loss ( I know I do ) I will be anxiuos to hear what they say on Monday to you ....Is there any where she can be that there is someone to look after her that is reliable ?someone that will ease some of this off of you and your niece??? I am thinking about you .........sorry .........God Bless .........Lyn
Posted 10/30/2005 10:39 PM (GMT 0)
Hello Lyn, thankyou for your reply.

Usualy Stella just has the one tablet to take in the evening and surprisingly that is the one thing that her husband does do for her. Stellas daughter Marie is still living at home and she generaly does everything else for stella. it depends what mood.Stellas husband is in to be honest.Sometimes when I have gone to pick Stella up he has made sure that Stella has had a bath and her hair is combed etc,but at other times it's obvious that he hasn't done these things for her. If marie is there she will do it but she has recently started at collage and she works part time so it is obviously becoming more difficult for her to do everything that needs to be done. And she is now 26 and engaged so she cant be expected to be there forever. It's the changable moods of Stella's husband that makes things so difficult realy because one minuete he has us thinking "oh maybe he isnt so bad and he is trying" but the next minuet he does somthing so rediculous and stupid in his treatment of Stella that all we want is to get her out of there.

Yes I think it is the EEG. Stella had that in 2001 and I think it was that test that showed that there was a problem. I am going to ask the consultant when we see him if Stella can have another one.

When Stella went to the hospital yesterday she had a water sample tested(somthing they had failed to do the day before) She has a water infection. The nurse said that it is possable that Stella's seizure problems were due to the infection but they dont know for sure.

Thanks again Lyn

 

Posted 10/31/2005 2:38 AM (GMT 0)
Dear Stella,
When you say "water infection", do you mean urinary tract infection? If so, there's a history of them in my family, and after a few myself, I started taking a cranberry capsule every day. You can get them in the vitamin aisle, and they don't cost much, and it really worked for me.
Good luck.
Geeve
Posted 10/31/2005 7:46 AM (GMT 0)
UTI makes us with AD very agitated & downright grumpy.Any type of infection causes problems.What medication is she on???
Posted 10/31/2005 10:59 AM (GMT 0)
Thanks Snowy I was waiting for you ............The infection could cause so many problems and peeps just do not realise what it can actually do ........cranberry juice is good as a preventitive measure but she needs good medical care as well .........EEG will show the activity in the brain or the damage that may be there ........alcholilcs are moody ( my ex) and it must be downright terrifying for Stella to have to live in that environment as well ( I know what I went thru ) and I know you and her daughter are doing your best it is hard I look after my MOm and I find it is hard on me but I know she would flip if I was to put her in a home .........I hope they get this test done and things start to ease up for u and for Stella ............I will be thinking of you ............my prayers ...............God Bless ...........Lyn
Posted 11/3/2005 11:21 AM (GMT 0)
Snowylynne... Stella takes Aricept (sp) for her dementia. And at the moment she is on the antibiotics for the water infection but I am not sure what they are called. She is doing better,eating and not sleeping so much and so far no more of the weird seizure type symptoms.

Geeve... Thanks for the tip about the cranberry capsules. I know that Stella has taken them in the past but she tends to enjoy drinking the juice so I will get her some of that. I am going to suggest to my niece that she also gets some Acidophilus tablets to help put back the friendly bacteria that the antibiotics will probably kill off.

 I spoke with the social worker and she has said that because there are certain guidlines that she has to follow it is difficult for her to do anything about the home situation. She said if she saw My sister being abused or saw evidance of abuse then she would beable to do somthing. But as things stand,she says she cant do anything about Stella's husband shouting or dealing with Stella with impatience.  she also said that none of us can guarantee that we would be aware if Stella was ill in the night because we would be asleep,so in the same way she cant say to Mick that he isnt aware enough. The only thing she can do she said is to gain his trust and explain to him how important all these things are.
 
I was surprised to be told by the social worker that he(my sisters husband) actuely has phoned her up a couple of times and has admitted that things are getting difficult to cope with at home for him. The day centre was mentioned to him again and aparently this time he didnt say no. I think that he is coming around to the idea of someone coming into the home more to help out too.
 
Sometime soon,the sociel worker will be coming out with myself and Stella and we will go for lunch. I think it is a good idea because I think that I will pick up some tips on how to deal with certain situations that may arise when I am out and about with Stella,especialy as she is starting to revert back to child like behaviour when eating and going to the bathroom etc. I dont like asking her or showing her how to use a knife and fork instead of her fingers because I feel like I am patronising her and I hate that,although obviously I try not too.
 
On a side note.  I had to go into hospital today,just a small procedure nothing major. my other sister Marian got me a nice card and also one from Stella, Stella signed her own name but it was tiny writing and she spelt it wrong. Just seeing that, sort of brought home to me how much worse her symptoms are becoming and it made me feel sad.

Anyway, thanks again everyone and I will keep you posted on what happens on the 22nd at the meeting with the consultant.

Sue

 

Posted 11/3/2005 4:04 PM (GMT 0)
If she gets really agitated or angry Seroquel can help.I had a bad spot in Feb.& It put a stop to my anger & agitatin.Heathcare workers at the rehab hosp.hubby was in were not nice when they found out I had AD.Lie i'm adelpated or something.It took me by complete surprise as I'd never been treated like that before,threw me into a real tizzy...........I use Seroquel now asa PRN med.With my Dr blessing.
Posted 11/4/2005 1:25 AM (GMT 0)
Snowy,

Is Seroquel taken on a regular basis or can it be used 'as needed'. Dad has been having some real anxious/agitated times lately.

Thanks.
Posted 11/4/2005 7:43 AM (GMT 0)
Always rosie ususlly it is given every day in most cases,keeps the agitation down.One day I may need it every day too,who knows?
Posted 11/4/2005 1:16 PM (GMT 0)
Seroquel is a drug that has to get into system as well from my understanding .......hopefuly there is something else dad can use for this Rosie .......thinking bout you ......Give Dad and Mom a big hugg and you too ....God Bless ..Lyn
Posted 11/23/2005 4:10 PM (GMT 0)

An update

I went with my sister Stella and my niece marie yesterday for the apointment with the consultant.
 
The gist of how it went is, Stella is being sent for an MRI scan soon because she hasnt had anything done like that to check on things for years.
 
It was decided that because Stella is so against the idea of a day centre, that Cath(mental health nurse) will increase her visits to Stella and take her out to do things that Stella enjoys. She has already taken her out for tea and cake and Stella was fine with that. Stella already spends Monday with our other sister and Wednesdays with me so that will be 4 days taken care of. If the day care issue is forced at the moment,it will only distress Stella and make the situation worse.
 
Stella's husband has started to trust Cath the nurse so that is a big step forward. I think the next thing they are going to suggest is a night sitter for a couple nights a week to start with. This is because we have made them aware that Mick very often drinks at night so he cant be aware if Stella was to wake up or if she was ill in the night.
 
Because of Micks behaviour and the fact that he cant cope with himself,let alone Stella,they have talked him into having a mental health nurse into the home to try and help him because they can see that he obviously has big issues of his own that they want to try and help him with.
 
Stella only scored 13 on her last memory test I think, and she is going to be having another one soon. If she gets as low as 12  then they might take her off the Aricept meds because they say the low test results mean that it isnt doing anything for her. I voiced my concern that I have heard that some people become very anxious and even violent when Aricept is stopped. They said,if that were to happen then they would put her back on it even if it was doing nothing for her memory.
 
They are going to speak with Mick(a meeting in the home because he wont come to the apointments) and try to explain how important it is for Stella to be  looked after propery by Mick and explain how he can do that. I have warned them though,that Mick only sees what he wants to and he doesnt even seem to ever be able to see the point of view of others. He is totaly self absorbed. This is due in part to his drinking but in my opinion he has had the same atitude for as long as I have known him and thats about 35 years.  
 
We are sort of stuck between a rock and a hard place, Remove Stella from her home and she will be very very distressed,or she stays where she is with him and his attitude and that also causes anxiety.
 
She hates it when she can not be with her daughter Marie. She follows her all over the house. Things are taking there toll on marie now as well. She collapsed at uni last week. She is trying to do a university course,work part time and look out for "both" parents.
 
I asked the Doctor if he thought the strange seizure thing that Stella had could have been due to the effects of her UTI but he said he feels it is more likely due to her condition. I think this is one reason that he has ordered the MRI scan.
 
Thats it for now,on we plod.

Sue

Posted 11/23/2005 8:32 PM (GMT 0)
Baglady,a UTI Is called a Urinary track Infection.(or water infection as you call it.).Even a bad cold can cause problems,or pnumonia.You are right about the MMSE at 12 medocations are stopped.Except for agitation & outbursts they need to keep taking those meds.Being dehydrated can also caus UTI so see to it she had plenty to drink at all times,not when he chooses to.How is her appetite?
Posted 11/23/2005 11:28 PM (GMT 0)
hanks Snowy for your input .....am having probs here with the dang weather ............hard to keep online ..........God Bless ......Lyn
Posted 11/27/2005 4:44 PM (GMT 0)
Thanks Snowylynne

Yes it is difficult at times getting Stella to drink enough. She can have a glass of orange squash in her hand and we still have to remind her to drink it. The trouble is that she has started getting a bit annoyed about being reminded all the time. Not much else we can do though because like you said it is very important for her to get enough to drink.

Apetite wise,she will eat like a horse if it is somthing that she likes,but she is getting more and more fussy over foods lately. Did I read somewhere that with dementia the ability to taste is affected?

Sue
Posted 11/28/2005 11:06 AM (GMT 0)
Sue ........with Mom I just keep getting her small drinks constantly and usually this gets her enough fluids........her appetite is good as well but definitely has changed,she is very open about what she refuses to eat and what she thinks of the food put in front of her ,so I do try and make what I know she will eat ....for instance if I do a turkey or roast beef then I will make up a few dinners (using the TV dinner trays) and freeze them so that I just have to pop it out of freezer and into oven or microwave .........it is a time saver for sure as well I know she will eat it and she loves chocolate so I always keep her "aero" bars on hand .......My Dad is different though as I said he was a chef and wants his food looking presentable (of course ) and fresh lol.........I am not sure if I had told you that he was tested and he has AD as well (he is my step dad) so I am now looking after them both ,but have hubby and daughter to help and here to come to for support and answers .......God Bless ...........Lyn
Posted 12/2/2005 4:42 PM (GMT 0)
Lyn... Stella always likes a roast dinner too. She spends Mondays with one of our other sisters and I know she always enjos a roast dinner there. I very often also do her a roast on a Wednesday as well,but not always. She loves roast potatoes. Stella likes chocolate too, but cake is her favourite out of everything I think so we have to keep that well hidden until after dinner lol. We have found that she loves yoghurt,and that is a good, thing especialy as she has had a few rounds of antibiotics lately for her UTI's


I am sorry to hear that your Dad now also has AD,that must be tough on you all.

Take care

Sue

Posted 12/2/2005 8:00 PM (GMT 0)
Yes,Alzheimer's does affect taste of foods.Every day day Is different with mer,I get bored with the same foods.I'm more Into eating veggies than anything but love my Steak & Margaritas,lol.
Posted 12/2/2005 11:01 PM (GMT 0)
You have just reminded me of somthing I was meaning to ask SnowyLynne. Stella is on Aricept. Is alcohol a no no when taking this? I keep meaning to ask my Brother in Law and my neice about this because they are the ones that give Stella her tablets at night. I know that Stella used to enjoy a glass of cider with a meal and it would be nice to think that she still can without it being a problem.

Thanks

Sue
Posted 12/2/2005 11:44 PM (GMT 0)
My Dr said I could drinl moderatly,one or two drinks a day,but i don't drink that much by any means.Once or twise a week for me....although I do like an egg nog with rum in it at nite sometimes.

Also Aricept does better when taken In the morning,less agitation,sundowning.

Posted Yesterday 10:18 AM (GMT 0)
Hey Sue ,,How are you doing today ..........God Bless .....Lyn
Posted Yesterday 3:25 PM (GMT 0)
Hi Lyn

I am fine thanks. No drama's at the moment with Stella,she has actuely seemed a lot brighter in her self since being treated for the UTI. Not sure if next week will be the same story, as Stella's daughter is going into hospital for a small operation and Stella stresses when she isnt around her. It will all be fine in the end though I am sure.

How are you Lyn?

Sue
Posted Yesterday 4:43 PM (GMT 0)
Baglady,popcycles are a good source of fluids too,Carnation Instant breakfast also.They come in different flavors.
Posted Yesterday 10:51 PM (GMT 0)
Thanks SnowyLynne.

I don't think I have seen the Carnation Breakfast but I will have a look around to see if I can find them. Is it a sort of milky drink with vitamins added?
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