Where do we go now?

[Kath131]

  Sorry guys need a bit of a rant, been to see my sis Sheila today I came away and a cried my eyes out. She looks so forlorn, lost, vacant and is losing weight. She has been in the psychiatric hospital 4 weeks tomorrow and they have had heart tests done and still not received the results or go ahead to try her on any medication/ anti-depressant.  They have started her on diazepam and a new drug to her called Loferpramine. Any comments on this drug welcome.

After seeing her today nothing has changed from when she first was admitted.  She will speak only when spoken to and sometimes refuses her meals and drinks! Which is very worrying as she is only a petite lady and 71 years of age.  Why, why do these things take so long to get sorted when they can see she is getting worse!!

Rant over back to praying.

Thanks for listening.
Kath   

[SteveW]

Your sister was on Imipramine which was the first ever anti-depressant. There are about 8 drugs in this group referred to as the tricyclics. Lofepramine is another of the group but it stands out a little. It has the reputation of affecting the heart less than the others and is recommended by NICE. It is also the least sedative of the group. I would guess that the possible heart complication is why they have chosen it, though there are others that are even safer. Why they have given her Diazepam I can't think. Does she get anxious or have problems sleeping ?

It must be heartbreaking to see your sister so bad but people are capable of getting far worse. She is still sometimes eating and drinking. People do reach the point of refusing food and drink completely. She is still responding when spoken to. Plenty of people stop talking full stop. But anti-depressants can work wonders. I have seen people who were laying in bed taking no food or drink return to normal in two or three weeks.

It can seem like things take forever but your sister has better access to medical care as an in patient. Your sisters consultant may not always be around but a Registrar or an SHO should be and adjustments can be made to her medication quickly. Your family has my best wishes.

Love

Steve

[Kath131]

Steve thank you I really appreciate your advise and information.  She was very shaky and was not sleeping well, very tearful and cried every time her own family visited, as she did once while I was their and it is awful to see, I think this is the reason they started her on diazepam.

The diazepam has calmed her down but she looks like she is on another planet and I can see she wants to cry. She is losing weight but I know she is being monitored closely by staff, it is a brand new hospital and even Sheila said their are more staff than patients. 

Apparently, their is one member of staff for every three patients and they are monitored throughout the night and nobody apart from the patient and staff are allowed into their bedrooms.  Knitting is allowed but if the patient moves about they have to give the needles to a member of staff, which makes sense!  It seems an excellent hospital and I am sure they are doing their best but getting results from the local hospital seems to be a difficult job and not hurried, this is why her husband and family are getting a bit annoyed.  The consultant has said that as soon as they receive the results if she needs any treatment by the cardiologist she has to be treated as urgent.

So everything crossed and more prayers is the only thing I can do apart from show her my support.  I will pop in now and then to post to help my sanity as much as anything else!

regards
Kath 

[SteveW]

I am sorry that you are having trouble getting cardiology results. Cardiology departments can be incredibly busy. I had to pay 3 visits myself earlier in the year. When I first went every seat in the waiting room was taken and almost all the free space was occupied by people standing and waiting. The time they can take is considerable. When I had finished everything I asked how long it would take for a letter from them to reach my GP. I was told 3 weeks and it actually took longer. Perhaps they employed the world's slowest typist.

It sounds like you have a decent hospital. My local hospital has single rooms as something of a luxury. Many wards are still rooms divided into four bays separated only by curtains. I was told one ward had a room divided into 8 on the same basis. Regular monitoring is pretty standard, including through the night. If someone is suicidal 15 minute observations are standard.

You have a bit of a wait now. The lofepramine has to build up in your sisters system and it is usually a couple of weeks after that before any results appear. But she is being actively treated now, which she wasn't. I think it is a good idea for you to use here. Drugs are really my specialism but other people are better at support. Take care of yourself, you don't want the stress to affect your health.

Love

Steve

[Amanda_George]

Sorry I didn't reply to your message before now but it's only just showed up on my laptop!

I hope Sheila's care team can help her - it must be awful to see that she is so low and it's hard to get in touch with her medical bods!  Hopefully the pills will kick in soon and she'll start feeling better!

Keeping you both in my thoughts and prayers!

[Kath131]

Thank you Steve/Amanda,

I realise it's a waiting game and nothing/nobody can change things immediately. My older sister had dementia and she refused to eat or drink, needless to say that is what she died of but you cannot be force fed so it was a long, slow and horrible way to watch her die.

I am just so worried that Sheila is heading that way. God forbid! I only prayer that the anti-depressants kick in and make a difference.

regards
Kath 

[Amanda_George]

Thank you Steve/Amanda,

I realise it's a waiting game and nothing/nobody can change things immediately. My older sister had dementia and she refused to eat or drink, needless to say that is what she died of but you cannot be force fed so it was a long, slow and horrible way to watch her die.

I am just so worried that Sheila is heading that way. God forbid! I only prayer that the anti-depressants kick in and make a difference.

regards
Kath 

I don't know what to say other than I read your post and I care!    if you want it?

[SteveW]

Worrying about Dementia is bound to be extreme after your experience with your elder sister. I know a bit how you must feel. One of my uncles killed himself by refusing food and drink. I used to visit him every day and the memories have never left. But with any 71 year old a psychiatrist is going to consider the possibility of Dementia. They are treating her for depression and they haven't requested tests of her cognitive abilities to explore Dementia so they must lean towards depression.

In your first ever post you mentioned that your sister thought the staff were not trying to help her and were telling her lies. That sounds more like mild psychosis in deep depression than Dementia. But I am no Dementia expert and it can first manifest itself in so many ways..

Only time and a response to anti-depressants is going to take away your fear. I hope you can find some peace amongst it all.

Love

Steve

[Kath131]

Amanda/Steve,

Once again thank you for your replies.  I do appreciate them Steve, even though I know your expertise is mainly drugs (can I have some lol), you also have an understanding and caring nature by the sounds of your messages. 

Same applies to you Amanda, I picked you out straight away when I first joined the forum. I did mention the B12 to Sheilas husband but I don't think he'll follow it up, like a lot of people they don't have a lot of trust in vitamins and he is the type of person to go with what the doctors say rather than try somebodies suggestions.  He is doing is best to cope but like me he dreads going to see Sheila but we obviously will keep going she needs all the love and support we can give at the moment.

The consultants seem to think at some point, before she was admitted to hospital, she had an angina attack. She had been to A &E 3 times previously and they put it down to panic attacks! Maybe that at that time she had suffered a slight attack but it had not been picked up on.

Makes you lose faith in the NHS, although I'm not picking on staff I know they are underpaid and overworked in this day and age. I suspect that sometimes things get missed because of this. (no offence intended to NHS workers honest)!

As you have already said Steve, time and patience will tell once the drugs kick in, and prayer they help.

Regards
Kath 

[Pip]

My dad was seriously ill late 1998 / early 1999 and was barely eating and drinking which was terrible to see.  I know it is different from what your sister is going through but the feelings were similar.

Dementia can be frightening but it affects people in different ways.  My nanna had it for the last year or two of her life and just went quiet but she still ate normally.  She had a series of strokes over the last week of her life and was unconscious during this time and the last one killed her.  My grandma had dementia for a few years of her life.  She had always adored my dad who was an only child - more my grandma's choice than my poppa's.  However my grandma hated my mum and part of the history behind that was my nanna went out with my poppa before my grandma did.  My nanna was never ever nasty about my grandma but she would make snide remarks about my nanna.  Anyway when my grandma should signs of dementia she would be nice about everybody including my mum which was almost creepy.  My grandma would regress back to before she was married and would talk about her siblings and mother.  Fortunately my sister and I remembered our great aunts and uncles (two were still alive), and, our great grandma.  My grandma wouldn't always eat properly but she didn't go to the extreme and would have lived longer if she hadn't fallen down stairs.  It turned out she had an ulcer which burst when my grandma fell and that's what killed her as she suffered internal bleeding.

I can understand your thoughts about the NHS as I trained to be a nurse.  It infuriated me as nurses are badly paid so many either go abroad or become agency nurses as they earn more.  The problem becomes that nurses become overworked due to having agency nurses who are restricted in what they can do.  I loved the nursing side of the job and hated doing so much paperwork.

[Amanda_George]

Is there any way you can quietly mention the vitamin tests to someone at the hospital "because Sheila is eating and drinking so little" not to go over her hubby's head or anything, but as her sister could you maybe drop some hints to her doctor?  There's also vitamin D because of not being able to get outside in the sun too... maybe ask to have all her vitamins and minerals tested and get the doctor or nurse to think it's their idea too?   

[Kath131]

Is there any way you can quietly mention the vitamin tests to someone at the hospital "because Sheila is eating and drinking so little" not to go over her hubby's head or anything, but as her sister could you maybe drop some hints to her doctor?  There's also vitamin D because of not being able to get outside in the sun too... maybe ask to have all her vitamins and minerals tested and get the doctor or nurse to think it's their idea too?   

Hi Amanda, I will mention this to her nurse.  Although I know she is in the right place it's so upsetting to see her now, she is usually very chatty and funny enjoys a laugh and a meal out. Always fussing over her grandchildren and spoiling them!

Her husband went to see her today and he rang me afterwards, no sign of any improvement she won't say a word but will answer you if you speak to her. It's early days yet for the new anti-depressant to be working the next two weeks hopefully should show one way or the other.

regards
Kath

[SteveW]

I wouldn't attempt to manipulate staff at your hospital in any way. There is only one way to relate to staff and that is on the basis of complete honesty and openness. The fact that B12, Folate, and Vitamin D deficiency can lead to psychiatric symptoms is known to anyone who has been around psychiatry, it was even covered in my Social Work training. Every psychiatrist is completely aware of these deficiency states and will have been since they were medical students and if there are clinical indications you can assume that the relevant blood tests will be ordered up. If they haven't done it so far you can assume that your sister isn't showing relevant signs and symptoms.

It is possible that A and E made mistakes but I think it is a slim possibility. If your sister was admitted with central chest pain or
other cardiac symptoms I feel certain that A and E would have done an ECG. The machines that do these have become increasingly clever over recent years. As well as producing a trace they now tend to have auto detect. Angina has its own signature ECG and if it had been present the machine would have printed this out. Things are not so dependent on skilled medical interpretation as they used to be. That isn't to say that your sister hasn't had angina episodes. I think ECGs can be completely normal between episodes. Getting things wrong 3 times in a row seems a bit unlikely.

It would be reasonable to tell a doctor that you are particularly worried about eating and drinking because of your experience with your older sister. You could ask at what point they consider supplementary feeding. Bottles of milk drinks fortified with masses of micro and macro nutrients are commonly prescribed when people aren't eating and are losing weight. Do they weigh her every day ? Is she seriously losing weight ? It might help you to discuss the whole question.

I hope you are holding up generally. Take care.

Love

Steve

[Kath131]

I wouldn't attempt to manipulate staff at your hospital in any way. There is only one way to relate to staff and that is on the basis of complete honesty and openness. The fact that B12, Folate, and Vitamin D deficiency can lead to psychiatric symptoms is known to anyone who has been around psychiatry, it was even covered in my Social Work training. Every psychiatrist is completely aware of these deficiency states and will have been since they were medical students and if there are clinical indications you can assume that the relevant blood tests will be ordered up. If they haven't done it so far you can assume that your sister isn't showing relevant signs and symptoms.

It is possible that A and E made mistakes but I think it is a slim possibility. If your sister was admitted with central chest pain or
other cardiac symptoms I feel certain that A and E would have done an ECG. The machines that do these have become increasingly clever over recent years. As well as producing a trace they now tend to have auto detect. Angina has its own signature ECG and if it had been present the machine would have printed this out. Things are not so dependent on skilled medical interpretation as they used to be. That isn't to say that your sister hasn't had angina episodes. I think ECGs can be completely normal between episodes. Getting things wrong 3 times in a row seems a bit unlikely.

It would be reasonable to tell a doctor that you are particularly worried about eating and drinking because of your experience with your older sister. You could ask at what point they consider supplementary feeding. Bottles of milk drinks fortified with masses of micro and macro nutrients are commonly prescribed when people aren't eating and are losing weight. Do they weigh her every day ? Is she seriously losing weight ? It might help you to discuss the whole question.

I hope you are holding up generally. Take care.

Love

Steve

Hi Steve, yes I see and understand what your saying. I'm only going on what her husband tells me, I haven't approached or talked to any doctors or nurses in charge of Sheila I don't want her family thinking I'm in charge!  I am sure that if she has had an angina attack they will find this out from her latest tests.  I don't yet know if they have received the results back her husband always rings and tells me of any new developments.

She is losing weight but as yet I don't think it's dramatic. She has been on the formulas before and as you say they would start her on them I'm sure if things get too drastic.

Her husband is finding it hard to cope but like me he knows that she need support and visitors even though she is not communicating. Having said that she does answer me if I ask her anything and listens when I speak to her.

Too early yet I expect for the anti-depressant to make any difference.

regards
Kath

[SteveW]

I thought you were visiting with your sisters husband. Going on your own and not talking to the staff must put you in a very difficult
position. Getting your information second hand can't be easy for you. If your brother in law hasn't been around hospital psychiatry he
might be struggling to get his head around what he is being told in the first place.

It is too early to expect anything yet. Lofepramine is usually started on 140 mg and increased to 210 mg if that doesn't work. But the
makers of the drug say that elderly people sometimes respond to lower doses. They may have started her on less than 140 mg. That might complicate how long before you can judge whether the drug is going to work.

I hope your brother in law receives adequate support. It doesn't seem right for him to be on an anti-depressant somehow.