What can I do?

[bucko]

I have not been on TP for a while, I just haven't been able. Don't ask me why, I just don't know. For quite some time now I have seen my John deteriorate and his well being has not been too good. Having visited the GP on so many occasions because of some pain or other. A couple of visits have shown there has been a water infection, but other visits there has not. Our last visit to the Psychiatrist resulted in a diagnosis that John was suffering from some sort of depression, which I am told is not uncommon in people with Parkinsons with Dementia. It was suggested that he come off one of his meds, Setraline and be put on an anti depressant Miztrapine which would help him sleep at a night as his sleep patterns have been horrendous, with him getting up and down all night long and me not getting any sleep, but him sleeping during the day a lot. Our GP had given him a sleeping tablet only three days before we saw the Psychiatrist. This worked for the first night, but was not as effective the following nights. The Psychiatrist suggested we stop this sleeping tablet right away, but should John have difficulty on the new drug to give him one then.

His sleep pattern has not improved at all. Trying to get him back into bed once he has woken, got up, wandered around the house turing all the lights on and behaving in such an odd manner (taking pictures down, taking things apart, taking his p.j's off and walking around naked) has been awful. He has lost his abillity to sequence and co-ordinate his movements to get into bed and turn over. The Psychiatrist claimed he has not been getting substantial deep sleep; he has just been having superficial sleep. He assured me that this new tablet would result in him having a good nights sleep and waking refreshed. I was told he would also be assigned a CPN to monitor his change of medication. He was on a low dose to begin with and we weaned him off the setraline by giving him half the dosage and then stopping after a week. Starting the new drug by giving a low dose and then 30 mg after a week. He has been on the 30 mg since Thursday and since being on this new regime of medication has been a nightmare. We have still not been assigned a CPN and three days last week I called our GP as I am shattered with having no substantial sleep myself and I am now so weepy it is untrue. Our GP told me to try and get him not to sleep during the day and to get his body clock back into sinc. One GP told me to give him his new med earlier as having PD slows everything down and it takes longer to kick in. Also the three consultations I have been told to give him two sleeping tablets, but honestly they don't seem to be working at all until around this time in the morning, or sometimes even a little later, like 4 am and 5 am and then he sleeps till 10.30 am with me having to wake him to give him his meds at 7.30 am and 10.30 am. I just know I am worn out.

What can I do? I feel so dreadful that I am only turning to you in desperation as I know I should have been on line many times before as I know how much you can help. I am sitting here with tears streaming down my face, feeling so sorry for myself.

 

[benny]

Hey Bucko

Have just read both your threads and Your poem brings such familar feelings I think to so many of us and I can really understand all the frustration and feelings that seem to be flying around in your head and although I have no advise or words of help to offer just wanted to let U no that U R not alone and to keep posting to get some support and comfort. Big hugs coming your way From Robyn

 

[jenniferpa]

Bucko -saying I am so sorry seems woefully inadequate but I really am. While you obviously have some element of medical support that also seems inadequate. Anyone who tells a carer to not let someone sleep has absolutely no idea what it's like to try and keep someone awake.

It sounds to me like you have reached a point which is normally described as carer breakdown. You desperately need some level of respite if you are going to continue to care for him at home. It might be he needs to be placed in a residential facility or even assessment to get his medications sorted out, or possibly you need an overnight sitter to allow you to get some sleep. Do you have any contact with social services?

I must confess, in your situation I would be calling the emergency social services number for your area and telling (actually probably screaming) that I couldn't cope any longer and they need to do something NOW. I wouldn't even wait until morning. The number (if you don't have it) should be on the local authority website.

You should have been assigned a CPN, yes, but what you really need at this time is a decent period of uninterrupted sleep so that you can make any decisions you need to make.

 

[TinaT]

Don't hesitate. Phone the hospital and ask to speak to the Consultant's secretary. Ask her could you make an urgent appointment to see the consultant as your husband's behaviour is now even worse than before and you need to see him/her.

If you can get an urgent appointment I would also ask the consultant to help you get a CPN as you still haven't been assigned one.

I fully understand your exhaustion and your upset that you are not getting the help for your husband and yourself that you should be. I would still keep phoning social services (on a daily basis if necessary) and letting them know in no uncertain terms that you are at breaking point and need help urgently - now! Have you had a 'carer's assessment'? This should have been done by now. It is to assess YOUR needs, not your husband's needs. This assessment should give you a few precious hours to yourself whilst someone comes in to take care of your husband or just stays with him to keep him safe.

As for the GP, I'm afraid I too found that I got little or no help at all. In fact the doctor on one occasion told me that many of the things I needed help with were of a 'social' nature and not in his remit. I might add that my husband was also incontinent and I was spending a fortune on commercial products and needed help with what was available. I was so angry with the doctor that from then on I found out myself who to contact for what and did things either by myself or through the consultant. Have you joined any local groups such as the AZ society? You need to be in contact with some local self help groups. Many of the members have already gone down your path and can give you tips and help on how to get what you need from the services in your area.

My heart goes out to you. There is some help, it is just so frustrating that you have to work so hard to get it.

xxTinaT

 

[bucko]

What can I do

Jenniferpa and Tina, thank you so much for your words of advice.
Firstly, our GP's have been a tremendous support in the past and I do believe they want me just to persevere as they believe this new tablet will help John in the long term. I think them telling me to increase the sleeping tablets to two was in the hope I too would get some sleep and they did say to keep them informed.

I have had a carer's assessment and have been offered support in the past, but John refused it. The Psychiatrist on our lat visit did hint that he could 'step in and over ride John's decision' should I feel I need help.

I went back to bed just before 4 am this morning after putting John back after another visit to the loo, and have only just woken up, so I have had three hours and feel a little better and clearer in mind. However, Monday morning I am going to phone not only the GP but the Psychiatrists Secretary and forward them a copy of the diary I have been keeping which will show what I have had to put up with since the introduction of the new meds, which I do believe are the cause of the situation I am in at the moment. Should they suggest John being placed for some sort of assessment, I know in my heart I am going to have to say 'yes'. I will also speak to the Social Services and my brother gave me a number yesterday for Local Solutions who he believes will also be able to help me. (Isn't it amazing how clearer you can think when you have had a little sleep). It's when you are at breaking point that you don't know what to do. Your mind is in fact all over the place, just like benny says, so thank you beeny for your kind words too.

I will keep you informed.

 

[lin1]

Hi . Ive not read your other posts yet , do you have any one who could help you fight getting some help say with making phone calls on your behalf.

Ive found that you have to shout loud to get things done and this is often when Your least able to cope with it all.

You desperately need a break (respite care)
your husband may need to go in for a period of assessment.
If you cant get an urgent appointment with his consultant SOON then at least ask for a telephone consultation,

Contact emegency social sevices and cry down the phone to them for help. Yes I know its sunday BUT they SHOULD have an emergency service, so call them today.

Also see your own gp re your own health as that is suffeting to isnt it.maybe they will be able to get things moving for you .
You certainy cant carry on like this for very much longer and i hope you get proper help very soon.

When you can would you please let us know how you get on

 

[Helen33]

Dear June,

I am so glad that you knew you could come to Talking Point for support. You have done so amazingly well caring for your John all this time and I am so sorry that things have developed to this point. You do sound absolutely exhausted with it all and it's not surprising. I remember being at this point with Alan sometime last December

I appreciate that you are doing your level best to try to get John into a changed medication regime whilst also coping with the effects or after effects of an infection but I, personally, feel that it is times like this that we need extra support and practical help. John is not able to take responsibility for all that is involved and therefore you have to do what is best for the overall circumstance and this is going to mean John is going to have to get used to some additional help for the greater good

Perhaps if the GP came to visit at home, just the once, out of hours when all this is happening then it would help to see that you need help whilst this is brought under control with the new medication. You certainly need to be seeing a CPN as a matter of urgency because they have access to all kinds of services including the consultant. The CPN will also assess your own carer situation and help you.

Keep posting June. TP is here for you as and when you need.

Love and a (HUG) xx

 

[bucko]

What can I do

Thank you Helen for your advice and kind words. I have just got JOhn up now, showered, shave and dressed him and he is so disorientated and groggy, I am thinking tonight I won't even both with the sleeping tablets, as they are obviously not working. I will let you know how I get on with the GP and other services tomorrow.

June x

 

[Grannie G]

Dear June

I`m so sorry you are having such a difficult time.

Dhiren was prescribed Mirtazapine and it was most effective. But Dhiren did not have Parkinsons and is diabetic so the drug might have taken effect sooner or been more effective than it might be for John.
I suppose the doctors have to try with the drugs they think might be the most suitable.

Is there no chance of respite for you June?

The Psychiatrist on our lat visit did hint that he could 'step in and over ride John's decision' should I feel I need help.

This was said to me by the consultant and the CPN. I don`t believe these statements are made lightly June, your consultant obviously feels you are in need of support and that is the one way it can be offered.
Would you consider it?
Remember [as if you could ever forget] your husband has dementia and is not able, at this stage, to make an informed decision.

 

[BeckyJan]

Hello June:
I cannot add anything further to what the others on TP have said to you.

It is inevitable you need respite and maybe ideally John will get an assessment during that time. Your post brings back vivid memories of my time when David was wandering, and subsequently falling, throughout the night. I too was exhausted and cried out for help

My heart goes out to you; I am certain you will get help once you accept how urgently you need it.

 

[Sandy]

Hi June,

What a terribly confusing and exhausting time you've been having.

The Psychiatrist claimed he has not been getting substantial deep sleep; he has just been having superficial sleep. He assured me that this new tablet would result in him having a good nights sleep and waking refreshed.

From time to time sleep disturbances have come up on TP. It seems that something called REM Sleep Behaviour Disorder can be a feature for some people with dementia, especially Lewy Body Dementia (the type associated with Parkinson's).

This disorder seems to result in disturbances to the deep, REM sleep that we all need to fully 'recharge our batteries'. You can read more about it here:

http://www.webmd.com/sleep-disorders/guide/rem-sleep-behavior-disorder

It may or may not apply to John, but thought you might want to read about it. Does he ever 'act out' in his sleep or have vivid dreams?

It's also interesting to note that the article says:

In 55% of persons the cause is unknown, and in 45%, the cause is associated with alcohol or sedative-hypnotic withdrawal, tricyclic antidepressant (such as imipramine), or serotonin reuptake inhibitor use (such as fluoxetine, sertraline, or paroxetine) or other types of antidepressants (mirtazapine).

And it was mirtazapine that the psychiatrist prescribed as an aid to sleep.

The problem with so many of these drugs is that reactions can be very,very individual and also depend on any other medical conditions present.

Perhaps it would be worth seriously considering the option for emergency respite or a stay in an assessment unit where all the medications could be monitored.

Take care,

 

[bucko]

What can I do

Hi everyone. Your advice is so welcomed. I really do understand the need for some kind of respite and will look into this tomorrow and I will refer to what the Psychiatrist said about standing in, as I know John does not want outside help.

Sandy, John has been suffering from REM sleep disorder for some time and the PD Consultant prescribed Clonazepam, which has helped him significantly, as he did enact his dreams; sometimes hitting out at me; screaming and swearing. When I mentioned this to the Psychiatrist, he did say that this REM sleep disorder may reappear with this new drug and that was one of the reasons, I believe, he was being given a CPN to monitor the situation. (I ask myself why he didn't assign one immediately as surely this is the time when he needs to be monitored by someone professional - not two weeks or more down the line). They have suggested that John may have Lewy Body Dementia but have not confirmed this and when I asked the Psychiatrist to confirm John's actual diagnosis the last time I saw him, he said not to get too hung up on diagnosis as the treatment is just the same ??? He said John has Parkinsons Disease with Dementia. He said usually in patients with Lewy Body Dementia the Dementia comes first and the PD follows. John got it the other way around, but did he, I ask myself, as he became forgetful as early as when he was 50 and he wasn't diagnosed with PD until he was 58. The Psychiatrist did say that alot of the PD medication has a lot to do with the dementia, but that there is a fine balance between motion and memory and John has been very clear he wants motion to be considered first. (I on the other hand want it the other way, but that is me being selfish, as I feel I can cope with his PD). All I know is this illness and whatever form of dementia a person has is a NIGHTMARE and one, and I bet many others, wish they could wake up from.

Thank you for all your help and support.

 

[Helen33]

Dear June,
http://memory.ucsf.edu/drupal/sites/all/files/article/ftd/MAC_FTD_Primer.pdf

I've attached a link which you might be interested to read with a view to the issue of diagnosis. In the middle section you will see the the author has mentioned how FTD is often not understood and can be mistaken for Parkinsons or other things.

This document is taken from TP's Resources Section under "Really Useful Resources" and then under Frontotemperal Lobe Dementia University of California. It is my understanding that Lewy Bodies is a form of FTD and I believe the MD makes reference to this in one of the video links

If you feel you can identify with any of what is stated in this any part of these links, then you could think about asking the consultant to read and listen through it and come back to you with his thoughts. If push came to shove and your consultant wasn't too sure, he might be willing to contact the MD at the University of California and talk through John's case with him. It is my limited understanding that it very much makes a difference as to diagnosis and the treatment is not the same for all.

If you have the time or the inclination to read and listen to any of the short video clips, I will be interested to hear what you think.

Love xx

 

[Sandy]

Hi Helen and June,

It is my understanding that Lewy Bodies is a form of FTD and I believe the MD makes reference to this in one of the video links

Ummmm...I'm not medically trained Helen, but my understanding is that these are separate diseases, though there may be some overlap in the symptoms.

June, I think it may be very easy for a psychiatrist to say things like don't get too hung up on a label, but based on my expereinces on TP, most people with dementia and their families do feel a bit more 'in control' (of a fairly unpredicatble and uncontrolable process) to have something approaching a definite diagnosis.

For example looking at the Alzheimer's Society factsheet on LBD:

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

And this American site:

http://www.lbda.org/category/3437/what-is-lbd.htm

both mention the importance of avoiding/carefully using neuroleptic drugs:

For people with dementia with Lewy bodies, neuroleptics may be particularly dangerous. This class of drugs induce Parkinson-like side-effects, including rigidity, immobility, and an inability to perform tasks or to communicate. Studies have shown that they may even cause sudden death in people with DLB. If a person with DLB must be prescribed a neuroleptic, this should be done with the utmost care, under constant supervision, and should be monitored regularly.

- from the AS factsheet.

Now if you had to take John to hospital or some other setting where they did not know his complete medical history, it would be very important for you to be able to explain his condition.

The delay in getting the support of a CPN does seem very lax given John's previous history of REM SBD. It was good to read that the Clonazepam did work for him.

Take care,

 

[TinaT]

Someone posted a u tube video link about Lewy Body Disease here on TP. As my husband has LBD I went to the link and viewed all the videos associated with LBD. It was like a light being turned on for me! An American Professor explains quite clearly (although with some technical language) exactly what the disease is and also how easily in the past it has not been spotted by doctors. As far as I know LBD is treated differently than other dementias as there is one drug in particular which is very, very dangerous for LBD sufferers. The drug is haloperidal.

I was so impressed that I kept the link. Here it is:

http://www.youtube.com/watch?v=tu1GeEuGI3U

xxTinaT

 

[bucko]

What can I do

Helen, Sandy and Tina

All very interesting links. Helen, there are some overlapping symptoms, but I think the fact that John's MRI scans don't usually show up anything and that his loss of smell and many other indicators are linking clearly to the correct diagnosis of Parkinsons. He takes levodopa and has no problem with this drug for his PD. I am told also that many of PD medications cause memory and confusion problems, hence the link to dementia. His tremors are few and far between, although he does have a lot of internal tremors and the rigidity is a big problem for him. The hallucinations and his behavioural problems make me ask questions when I listen to the videos of LBD and read articles on this. I can with hand on heart say I could relate alot to John. I have to listen to what the Consultants say as they are the professionals and I agree with them that they say a little bit of knowledge is dangerous sometimes, but I do like to be in control especially as I was once told of the dangers of John being given anti psychotics. This has always worried me, so when John went into hospital I went armed with information on certain drugs that may be a problem to John. On one visit to the Psychiatrist he wanted to prescribe John an anti-psychotic and I challenged him on this, referring to the conversation I had had when he was first diagnosed when I was told quite clearly that they were not sure whether John did have LBD and that they only way they would be certain would be after death when they would look at the brain during autopsy. However the Psychiatrist said that the drug quatipene (I can't remember how to spell it)was really good for dealing with troublesome hallucinations and they would give only the smallest dosage and would monitor him closely, but I was still reluctant for John to go on this drug and when it was identified that John had a urine infection (which was causing the troublesome hallucinations) I was happy for him not to be given this drug. However since then I have spoken to the PD Consultant, he told me this is the drug they do use with PD patients and they find it very effective. As to the new anti depressant they have given John, well I will speak to the GP tomorrow and get some reassurance from him, although I am convinced this does not suit John. I am sure had he been assigned a CPN these are questions I could have asked and a lot of the trauma I have experienced over the last week or so, may well have been lessened.

It really is a mine field and I often wonder if the prescribing of certain drugs is just trial and error, but for me who bears the brunt of the behavioural problems and problems caused by certain drugs, I do despair and I know I need help in understanding all of this.

 

[Helen33]

Hi June,

It sounds like you are doing tremendously well June in staying abreast of everything. I know how hard that can be. It is even harder when becoming sleep deprived and for this reason alone I hope you get the assistance of a CPN as soon as possible.

Sending lots of love and knowing that the things you post will help others.

xx

 

[Bookworm]

Bucko/June

Just wanted to say - sometimes things get so bad you can only visit to ask for help - please don't worry about that - we are here just the same - help & advice is not conditional on you being here all the time (just responding to your first point on this thread). So very nice to see you here, very sorry things not so good at all, xxx, Sue

 

[TinaT]

Ken has been taking quitapine for four years now with no associated problems relating to Lewy Body Disease. He was diagnosed by a professor at Manchester University, and although definative proof can ony be ascertained at the post mortem stage, every problem Ken has can be related to Parkinsons and dementia. I too take the opinion of professionals very seriously and his behaviour and problems leave me with no doubt whatsoever that the diagnoses of LBD is 'spot on'!

TinaT

 

[bucko]

What can I do

Having been up on the hour every hour through the night, I am again so shattered and became so concerned at 5.30 a.m. this morning when John, who I don't believe has slept at all through the night, asked me to call for a Doctor as he did not like the feeling of blood gushing around his body and that he had a nasty feeling in the back of his head. He had obviously been hallucinating through the night as he told me to bring in the child that was in the road on her own, and he was worried about her. I rang the NHS Direct who listened attentively, asked me all kinds of questions and then determined he was OK (as he had then fallen asleep and was sleeping peacefully) but that I needed to speak to the out of hours social workers. I rang them and they are forwarding our details of the emergency EDT team, but suggested I ring again at 9 am to the in hours team, also to speak to our GP to keep him in the loop.

Again I am at my wits end, can't stop crying and well, what else can I do .....