2 years on

[Martyn_R]

Hi,

Its been 2 years since my dad began to show confusion with time of day. He would finish work at tea time but after about 30 minutes of being in his house, he would be thinking it was morning and he was late for work. Before he was diagnosed, I don't ever recall my dad being off work ill and can't remember the last time he visited his GP. He's always been strong and always looked after himself.

Some of this "pull yourself together" attitude and tough outer shell must have rubbed off on me. I still find it hard to cry in front of my wife. So I do it when Im on my own where no one can see me.

In recent weeks my dads state of mind has deteriorated. Today was the worst I have seen him. He was so distressed and upset by what seem to be hallucinations. He often thinks there are other people in his house, telling him they are taking items of sentimemtal value away from him. Is this a common symptom of alzheimer's? Is it common to imagine there are people in the room with you and to obey instructions from them?

Up until recently, he seemed to manage quite well living on his own, with a daily visit from family to give him his medication and spend a few hours in his company. But the increase in the severity of the hallucinations makes me realize he needs more care. I will look after my dad and I will return all the love he had for me when I was growing up. I owe him that.

It's the first time I have ever done anything like this before. Im not one for opening up and telling a friend or a loved one that Im upset. But I reckon it will help to tell someone how I feel inside.

Martyn

 

[christine_batch]

Dear Martyn,

Welcome to Talking Point.

I am so sorry to read about your Dad. Is there a local Alzheimer's Branch near you? They are brilliant for helping and giving advice.

Also, on the main pag, you can download fact sheets which are very informative.

More people will come on line to help you.

It is common for the symptoms you described.

Best wishes
Christine

 

[Margaret W]

Dear Martyn

You can tell us how you feel, with no fear. But I think you should tell your wife as well, it is okay to feel scared, unsure, upset you know.

My mum used to imagine people had visited her when they hadn't, she didn't know who they were "two men and a woman that your dad invited" and eventually they were living in the house. They didn't tell her to do anything, thank goodness, cos I am sure she would have done it.

Keep us posted.

Margaret

 

[Martyn_R]

Hi,

Thanks for replies. It's quite humbling to know others want to offer support. I have been trying to educate myself about alzheimers since my dad was diagnosed.

I took my dad for his appointment with his consultant neurologist today. I told the doctor about these distressing hallucinations and he suggested the possiblity of 'Lewy Bodies'.
This is a new one on me! The alzheimers diagnosis still stands but he has been given another drug called seroquel to go with his donepezil so hopefully his hallucinations will be eased.

Thanks again. Im glad I have registered onto here. I did the right thing.

Martyn

 

[mica123]

hi Martyn

I am sorry to read of your dads deterioration,and i am also sorry that the consultant hasn't explained to you what may be happening to your dad.If i may i will try to enlighten you on what "lewy bodies in dementia"is.Firstly may i ask f your father has parkinsons disease?if so,then it is common that hallucinations occur.Dementia is an "umberella"term,it can mean Alzheimers,Dementia with Lewy bodies.front lobal!the list is not exhaustive,but extensive to people who have little or no experience of it.AND your not expected to know,so there should be no feelings of guilt.Dementia with Lewy Bodies is often found in people with Parkinsons disease,this is not to say that it only occurs with this disease.They may experienc periods of hallucinations from time to time,and sometimes it may be a urine infection that causes the confusion and hallucinations.Personaly i would advise thst you speak to youe dads GP/consultant and ask for a definitive diagnosis.If and when u get one it may be the clarity you need and if it is Lewy bodies,then ask for literature that will help you provide the necessary care and literature to help you understand the disease.xmica

 

[Margaret W]

Hi Martyn,

There is also a difference between hallucinations and delusions. The apparently need different approaches to treatment. I never really got there with mum, but one of the has the person actually seeing people, I think that is hallucinations, and delusions is imagining that people have been there, but not actuall seeing them.

I know my mum had to have this investigated as she said my dad had come back from the dead (I wish!) but eventually she did say he was there in the room so that meant something different to the psychiatrist.

Margaret

 

[TinaT]

My husband has Lewy Body Disease (LBD). He has spatial awareness problems which means that if I tell him to pick up his mug, his hands will wander around the table and eventually I have to give it to him. He also tries to pick things up off the carpet which are not there but he can see something. He is unable to follow simple instructions such as lift your leg up and will pull at his trousers instead. He has trouble using a knife and fork. His walking can be very poor posturally as he leans over to one side quite alarmingly. This in turn gives him a painful back.

He occasionally hallucinates but it is things he sees rather than people. He often is convinced that he is at work and the job is going wrong, or I have crashed the car and he needs to take it to the garage. He also has obsessive behaviour where he searches and searches for keys or shoes. I show him the keys and tell him they are sfe but a minute later he is looking for them again. He can become angry quickly and push or strike out if he feels he is being handled roughly.

It is a difficult disease to prescribe drugs for as some drugs such as haloperidol can be very dangerous for LBD sufferers.

Hope this helps a little. These are syptoms which my husband shows and I haven't listed all of them. They will vary from person to person but in general I have seen many other LewyBody Sufferers with all or some of these symptoms.

xxTinaT.

xxTinaT

 

[sue38]

Hi Martyn,

I have no experience of Lewy Bodies, as my dad has a different type of dementia, but I wondered whether you had seen this fact sheet from the AS.

http://www.alzheimers.org.uk/factsheet/403

By the way, a lot of us on here are not the type who usually open up to the world about how they are feeling, or how they are struggling to cope with dementia. There are always people here who understand, because they are or have been in the same place. Added to that there is a wealth of information here, or someone to point you in the right direction (in the nicest possibe way)!

Welcome to TP.

 

[Sooe]

Done the right thing!!

Hi Martyn
Just wanted to wish you well, know how hard it is to open up, even to strangers. Sorry to hear your having a rough time, your Dad is showing the same symptoms as we have recently had with my MIL, so so sad and so so hard to deal with, lewybody dementia is hard to deal with the same as all the other types, but you will do the best you can the same as we all are, knowing what to say or do will be hard, my MIL, still sees people etc even now she is in the nursing home, and used to insist people lived in the house while she was at home, even down to having somebody living in the garden shed! she also became very aggrevated with the TV imaging things were real whilst only a TV programme.....so please, and others BEWARE, monitor what your loved one watches....MIL watched Jeremy Kyle - and I am sure some of the language and things she is imagining have been helped on by such programmes.....its true its like having children all over again, even to monitoring programmes. So Sorry didn't mean to belittle your problems, but we have to feel and act positive as much as we can - the others are right, talk to your wife, don't shut her out she can help you, my husband finds opening up difficult and its his Mum not mine (but actually she is my MUM in my heart too!!!) but you know what I mean. We are all hear to listen to help when we can, its a great place to come to scream out your frustrations with this rotten disease, just wanted to wish you luck.
Sooe xxx

 

[Grannie G]

Hello Martyn

Posting on Talking Point starts, by writing how you feel, for yourself really, mindful that your post may be read by Anonymous Nobodies.

There`s no eye contact, no-one to see your tears......it`s just an outlet to offload.

But slowly you realize these anonymous people know where you are, know how you feel, and are willing to support and share. And you find yourself letting go of all the bottled up fears and emotions. And sometimes it helps.

Welcome to Talking Point Martyn. I hope it helps you as much as it has helped so many.

 

[Martyn_R]

Thank you so very much to everyone. I can honestly say, joining TP has been immensely helpful. It does help to offload feelings, and to know that others who are caring for their loved one in similar circumstances, read and listen.

There is just one more thing I would like to say. It quite trivial in retrospect and its likely been said before. It just something that I want to get off my chest. My dad did a great job when I was growing up. He would take me everywhere and he was the fun one, the joker. Always looked forward to our toy fights on saturday afternoons, in a feeble attempt to copy the wrestling that used to be on the telly at that time. And when I was a older, he was my mate who I shared my first pint with. What I'm trying to say is, he was a special person. So to see him now beating himself up inside, with the demons inside his head - That is the real heartbreaker for me. From what he was, to what he is now. Its a cruel, cruel disease.

Anyway, I am visiting TP regularly, and my thoughts are with everyone.

Martyn

 

[climb_mountains]

martyn my thoughts are with you. this is one of the cruelest diseases- i wouldnt wish this on anybody, but why does it always happen to the nicest of people?

beneath this cruel disease, your father must be so proud to have a son like you.
your fond memories of your father are irreplaceable and may they ever be that way.


tony

 

[Grannie G]

Dear Martyn

You have paid a wonderful tribute to your father and he would be thrilled to know you have so much respect admiration and love for him.

I hope you have told your mother how you feel.

 

[lesmisralbles]

Dear Tina

My husband has Lewy Body Disease (LBD). He has spatial awareness problems which means that if I tell him to pick up his mug, his hands will wander around the table and eventually I have to give it to him. He also tries to pick things up off the carpet which are not there but he can see something. He is unable to follow simple instructions such as lift your leg up and will pull at his trousers instead. He has trouble using a knife and fork. His walking can be very poor posturally as he leans over to one side quite alarmingly. This in turn gives him a painful back.

He occasionally hallucinates but it is things he sees rather than people. He often is convinced that he is at work and the job is going wrong, or I have crashed the car and he needs to take it to the garage. He also has obsessive behaviour where he searches and searches for keys or shoes. I show him the keys and tell him they are sfe but a minute later he is looking for them again. He can become angry quickly and push or strike out if he feels he is being handled roughly.

It is a difficult disease to prescribe drugs for as some drugs such as haloperidol can be very dangerous for LBD sufferers.

Hope this helps a little. These are syptoms which my husband shows and I haven't listed all of them. They will vary from person to person but in general I have seen many other LewyBody Sufferers with all or some of these symptoms.

xxTinaT.

Thats it
I think no one is listening about LBD.
Barb & Ron, who by the way, has it

 

[rhallacroz]

Dear Martin
Welcome to TP this is a life saver truly. I don't know what I would have done with out it 2 years ago when it all started for me. I too hate this disease but all I can say is get as much support as you can. Your dads dementia sounds very much like my dads but it has never been diagnosed. To me it is dealing with the symptoms which must be really scary for them. Seeing things and picking things up walking etc eating. I think the only positive thing in this dementia is that dad hasn;t lost the ability to recognize us or is that bad does he see us suffering. Not sure. Is your dad still living alone and have you got a long term plan for when and if things get worse. A CPN once said to me celebrate all the good times and plan for the future involve support at an early stage however gradual. I did this and looking back I am so glad I did as now my dad is still at home in a hospital bed in the lounge cant walk needs hoisting and and is double incontinent. He has wonderful carers who love and respect him.
I am totally committed to him and also my lovely family of 2 young children and a husband who without their loving and caring support I could not cope. I hope martin that you have support around you. We will always support you on here mainly because we all travel the same road some of us with maps and different route planners. Keep posting and get as much support as you can you will need it.
Take care of yourself
Angela