Maisie

Member
My Bolshie Husband
I am starting a new thread here because I had hijacked the thread about being 82.

Hubby is still in hospital. Now in the fifth week. He continues to be bolshie to all and sundry - me included. In fact he was so bad yesterday that I left after about ten minutes. He is continuing to lose weight for no apparent reason. He started eating again after the last bout of refusals but his weight has gone from 10 stone to 8st.12lbs. in the five weeks. I should be so lucky! Even ten stones was a drop from his "normal" weight of 11st.7lbs. He has virtually no muscle in his legs. They are literally skin and bone and his arms are going the same way.

Now he cannot stand up and even with a zimmer frame (to get to the toilet) he falls over and the staff have to rescue him from the bathroom floor.

The staff nurse told me yesterday that "he is trying his best". No way! I have known him too long for this to wash. Most days now, he flatly refuses to take his morning medication (numerous pills) unless I am there. So as I can't get there until the afternoon, he is hours late with his pills. Yesterday he threw the pills all over the floor! And this is his best? Apparently he said it was an "accident" and he missed his mouth when he tried to throw them all in his mouth together. The staff might believe that, but I don't.

I have a feeling that if he continues in this vein, they will just chuck him out and I will have to cope with him. The longer he stays there the more angry he gets. Although I have asked, there is no signs of a psych team to talk with him. He still asks silly questions. Yesterday when I walked in he demanded to know where I had been. On Friday he wanted to know where I went after "we" left the "gun room". How do you answer that? When I have the audacity to query his assertions, I get told that I am being awkward and trying to make him look stupid. Of course, there is no answer, other than to walk out.

A friend has suggested that he might be suffering from "stir crazy". I suppose this could be a bit true. Although he didn't go like this on previous occasions when he has been in hospital. He has also decided that it is the hospital that is upsetting him. If he has to go to hospital again - he is not going there! That too, cannot be answered. You call an ambulance and they take you to the nearest facility. The next nearest is about fifteen miles away.

Oh well. I will go in today as usual and see what transpires.

Maisie
 

Mig62

Member
My Bolshie Husband
Maisie, No disrespect to you but it sounds to me that your husband is very ill. Having dealt with this kind of situation myself, all I can say that often when it's someone so close to you we fail to see what's really going on. The person you knew no longer seems to be there and they also cannot understand what's happening to them, hence the bizarre behaviour. I suggest you need to have an honest talk with one of the doctors or the ward sister to find out what's really going on with your husband.Take care and look after yourself
 
My Bolshie Husband
When my father-in-law had spells in hospital, some short & some longer, he had very similar symptoms to those you describe, he was diagnosed with delirium due to the infection he had & the medication he was taking. His behaviour was very bizarre but returned to normal when he returned home.
 

Maisie

Member
My Bolshie Husband
Harrynjulia: that sounds very encouraging. However, they will not let him come out until his blood sugars stabilise. That is another problem. At home, before eating he does a blood test. Then we eat. We know what we eat in terms of carbohydrates, as we calculate this very carefully. He then takes insulin to suit. In the hospital they give him three jabs a day of 5 units each - regardless of whether he is eating or not. So what happens? He gets a dose of hypoglyceamia. They then rush about stuffing glucose into him. But because they do not know what they are doing (how much sugar = a unit increase in the blood) he goes high. They then suck their teeth, and tut and say "we can't understand this".

We have publications which explicitly explains how to work out the carbohydrates in any meal. But they don't want to know. As to stabilisation: in the 43 years he has been diabetic, many health people (including a Harley Street "specialist") have tried and failed to stabilise his blood. Yet the doctors now seem to think they can do this in a few weeks! We have asked to let us deal with the insulin. But - no they lock it away in the bedside cupboard and only unlock it when they decide to give him a jab.

They now describe him as difficult when he refuses to have insulin. He knows when he needs it, and that is not on an empty stomach because he is being sick, or was not able to eat one of the meals. They moaned to me once that his levels had gone down to 1.1. Upon enquiry, it seems he awoke feeling and then being physically sick. They came along gave him insulin, but of course he did not eat breakfast. So what did they expect FFS? They even telephone me to say that he "won't take his medication". Well, if they don't know what they are doing, perhaps it is fortunate that hubby does.

After 43 years, both of us have become quite expert at guessing at sugar levels. Most of the staff, almost without exception, were not born 43 years ago! Yet they think they are experts. It is patently obvious that they do now know how this condition should be managed.

Mig62: yes I agree with you, but the staff are making him worse. I have tried speaking to many of the staff, but to no avail. I agree, he does seem like a different person which I suppose he is, given what they are doing to him. He blames the hospital for him being ill. Nonsense - to a degree. He keeps saying if they would just discharge him we can work it out at home.

All of this is ridiculous when considering that it was nothing to do with diabetes which took him into hospital. It was because he had excrutiating pain in his left hip and whole leg, which was making him fall over when he tried to walk putting his weight on it. He was falling so many times through this pain and we hoped the hospital would be able to tell him what was going on and hopefully sort it out. He had x rays, scans and ultrasound on his hips. They told us after all this that nothing showed up so they didn't know what was wrong. But, "my God, look at the diabetes. We can do something about that". Yeah, right.

Difficult all round. Two days ago I was there when a doctor appeared. This doctor listened to us and said that she would tell the staff to let him sort out the insulin for himself, as she understood what was happening. However, it did not happen. I haven't been able to see her since.

Basically I have had enough. I would like to take him out - but what then? He is literally bed/chair bound. Mobilisation will be dreadful even with the zimmer. The rehabilitation lot who pop in to see him now and again have agreed that whilst his legs are lacking muscles he will not be able to walk. He does try, as I said before. He gets himself to the bathroom, but then falls and has to summon assistance. Although his weight is now so low, I don't think I could cope with picking him up off the floor. I had quite a bit of that before he went in. Pity we got rid of the wheelchair that my son got for me.

Sorry about all this moaning - but I can't see light at the end of the tunnel and he hasn't even walked into the tunnel yet!

I would go now and have a stiff gin - but I don't drink! Coffee will have to do.

Maisie
 

Akasya

Postless Pointer
My Bolshie Husband
Maisie , if i may , if or when a Doctor makes an agreement with you it means nothing unless they endorse the patient treatment plan at the foot of the bed or on the board beside the patient , always ask them so to do .

Steve
 

shash

shash
My Bolshie Husband
You could try talking to P.A.L.S. patients advice and liason service. Hopefully they have done several checks for water Infections. Patients often don't drink enough fluids. Wishing you strength.
 

juco

Member
My Bolshie Husband
My f-i-l was the same blamed the hospital for everything and argued with all and sundry, his problem was spinal which prevented him from walking, for the next couple of years he was impossible to live with and was in & out of hospital awkward with carers, hated hospital, he even took bits off his wheelchair I am sure out of spite.

On another note I was in for a week and they put me on hell knows what medication, I felt normal but wife and visitors saw me in a different light as being anxious and argumentative which is out of character for me.
On out patient follow up I asked what medication I was on and hey the records had not been transferred so they didn't know (after 3 months)

I suspect they give medication to subdue patients to make life easier for them. I would get a list of what they give him and google it.
 

Maisie

Member
My Bolshie Husband
Well, that is interesting! I have once or twice asked him what pills they have given him. It is difficult, because he doesn't know here at home! I put the pills out every night for both of us for the morning. I have a printed sheet which goes in his medication bag, which lists the medication, the dosage and the size per pill. I have even put after the name why he takes it. I stood by the trolley one day and watched the girl sorting his pills. She has it displayed on a laptop in front of her.

When he went in I gave him a week's supply of all the pills. I have not been asked for more - after 5 weeks? This happened the last time he was in. When he got home after two weeks, I took out the pills. Some had not been touched, some had one or two missing and others varying amounts missing. Given that these are all one pill at a time and all go together for one week, it is very suspicious. I suppose they would get out of it by saying that they had supplemented from their own supplies. If that is the case, why do they insist on current medication accompanying the patient on admission?

I am now off to get a bus to see what today brings. Don't take my car because if I can even find a space, the charges are exhorbitant. Being old, I can use my bus pass!

Maisie
 

35pluschips

Member
Top Poster Of Month
My Bolshie Husband
Perish the thought of being stuck in a hospital bed for five weeks & perish the thought of not having your other half home for five weeks. Trying times for you both.

I wish you both well Maisie...............82?????? Check your birth certificate love because when I met you, you didn't look anywhere near that age.
 

LauraB

Member
My Bolshie Husband
Poor you Maisie. I do hope everything works out for you both. It is a rotten position to be in. Good luck.
 

juco

Member
My Bolshie Husband
Well, that is interesting! I have once or twice asked him what pills they have given him. It is difficult, because he doesn't know here at home!

Maisie dont ask him ask the hospital, I am on 4 pills a day and would struggle to name them I just know 2 in the morning and 2 at night.

My wife questioned f-i-l medication and they stopped about 3 of them, I also questioned one of mine a couple of years back and I was on too high a dosage. back even further about 8 years they had me on one pill but neither the hospital not the local GP knew why I was on it so it was stopped.

Personally I dont trust the hospitals nor the GP`s as big pharma have their claws in it, we are now secondary to profit & directors bonuses.
When joining the local surgery my wife who doesn't take any medication had a list thrown at her as to what she might want...depression,high blood pressure etc. it was like a shopping list!
 

tintagel

Member
My Bolshie Husband
I am starting a new thread here because I had hijacked the thread about being 82.

Hubby is still in hospital. Now in the fifth week. He continues to be bolshie to all and sundry - me included. In fact he was so bad yesterday that I left after about ten minutes. He is continuing to lose weight for no apparent reason. He started eating again after the last bout of refusals but his weight has gone from 10 stone to 8st.12lbs. in the five weeks. I should be so lucky! Even ten stones was a drop from his "normal" weight of 11st.7lbs. He has virtually no muscle in his legs. They are literally skin and bone and his arms are going the same way.

Now he cannot stand up and even with a zimmer frame (to get to the toilet) he falls over and the staff have to rescue him from the bathroom floor.

The staff nurse told me yesterday that "he is trying his best". No way! I have known him too long for this to wash. Most days now, he flatly refuses to take his morning medication (numerous pills) unless I am there. So as I can't get there until the afternoon, he is hours late with his pills. Yesterday he threw the pills all over the floor! And this is his best? Apparently he said it was an "accident" and he missed his mouth when he tried to throw them all in his mouth together. The staff might believe that, but I don't.

I have a feeling that if he continues in this vein, they will just chuck him out and I will have to cope with him. The longer he stays there the more angry he gets. Although I have asked, there is no signs of a psych team to talk with him. He still asks silly questions. Yesterday when I walked in he demanded to know where I had been. On Friday he wanted to know where I went after "we" left the "gun room". How do you answer that? When I have the audacity to query his assertions, I get told that I am being awkward and trying to make him look stupid. Of course, there is no answer, other than to walk out.

A friend has suggested that he might be suffering from "stir crazy". I suppose this could be a bit true. Although he didn't go like this on previous occasions when he has been in hospital. He has also decided that it is the hospital that is upsetting him. If he has to go to hospital again - he is not going there! That too, cannot be answered. You call an ambulance and they take you to the nearest facility. The next nearest is about fifteen miles away.

Oh well. I will go in today as usual and see what transpires.

Maisie

My heart goes out to you Maisie, it's so distressing when a loved one is where they are supposed to be getting the best care, but is actually getting worse.

The P.A.L.S office is good place to start getting help not only for your husband, this is putting you under tremendous pressure, you too need some support in addressing what is actually wrong with hubby & what can be done, Don't accept any empty platitudes.

From what you've said he is Not getting the care he needs, there are/should be strict guidelines on administering Insulin, they are obviously not being followed! If he has, is continuously throwing up, it will make him less likely to eat & a further loss of fluids, this alone would account for his weight loss, also loss of strength, energy, leading to becoming immobile.

The pain in his hip/leg may well be coming from his back as Juco has suggested. I was brushed-off for over 18 months, told I had a 'soft tissue injury' when I had excruciating pain in my left hip/leg, worse when weight-bearing, eventually I could barely walk or stand due to pain. I was lucky enough to see a Locum Dr one day, within 5 mins he identified my back as the problem. Outcome, 2 prolapsed discs pressing on the spinal cord, hence the pain.

His 'moods' may be fluid related, not enough, possibly a UTI & generally feeling like nobody is listening. His memory loss/confusion could also be one of the above, or an early sign of dementia, the above symptoms are also indicative of Dehydration.

I know in many areas they are still applying the "The Liverpool Pathway", although strictly speaking, they no longer should be. This involves withholding fluids & sustenance, quickly resulting in loss of weight, rapid deterioration. There is a member on the forum who posted about a personal experience of this; hopefully she will read & post about it for you.

My very best wishes to you both, hoping you find the help & support you need. xx

PS: Try contacting PALS & Age Concern are also very helpful:

https://www.ageuk.org.uk/services/age-uk-advice-line/

https://www.nhs.uk/common-health-qu...t-is-pals-patient-advice-and-liaison-service/

It's always our nearest & dearest who bear the brunt, as they, we are, the only ones who care enough to look beyond, to question, to challenge when, what we're being told doesn't 'sit right'. I had over 5 years challenging the help, medical care my Mum was being offered, it was a soul destroying experience which left a very bitter taste, but at least I know I tried my best for her.
 
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Maisie

Member
My Bolshie Husband
Update. I have just got back from the hospital. Today he is now confined to bed with a catheter fitted. He also has two drips connected, one in each arm, effectively stopping him getting out of bed.

Confused doesn't even begin to get close. He asked me stupid things and was very concerned that I get the telephone number of the lady who phoned the ward to speak with the skier! The lady who does all the blood pressures and blood sugars in the ward said that she didn't recognize him when she came in today after three days off.

Dehydration? Yes probably. He is now refusing to drink as well as not eating. He was nursing a sick bowl when I got there. I got hold of a nurse and she got him an anti-sickness pill. It took a great deal of cajoling to get him to take a mouthful of water to swallow the tablet. However about fifteen minutes later he said that the sick feeling had gone.

I spoke to a male nurse about the confusion. He said it is probably because his blood sugars are high! No - it isn't! Over the course of the last 43 years I have had to cope with both highs and lows, and neither has produced the confusion which seems to have him in it's grip. However, he said he would speak to the nurse who is assigned to him. She apparently does the night shift.

We have battled against this for ever it seems. No-one medical will accept that reactions are different from one person to another. We can all read text books and spout a load of drivel about cause and effect. However, text book does not happen in the real life. Diabetes is very complex and every patient is different one to another. But "they" insist in applying text book answers to everything.

Dementia? Also very probable which is why I want a psych team to see him. Although I wonder about them. Two of them came to see another man in the ward. They were asking him foolish questions, such as :- do you know where you are? What day is it? Who is the monarch? Who is the Prime Minister. Even what is your name and your date of birth! The patient got quite annoyed and asked them if they thought he was stupid. A reasonable question I feel. They are not looking at the mind problem from the angle of what did you have for lunch and for your dinner last night? My husband could not tell you. He doesn't even know if he had breakfast today, never mind last night's dinner.

He asked one of the nurses today how long she had worked at "this hotel". She told him he was in hospital and he called her a liar, trying to "confuse" him. There is no real answer to this. Either something is going on in his head or if not then should be.

Confusion is too loose a term. He asked me to accompany him to the toilet with the zimmer frame in case he fell. I asked him if it was No. 1 or 2 he was wanting. He said "I want to have a pee". I had to literally unhook the bottle from the side of the bed and show it to him to prove to him that he had a catheter fitted! I asked him if he could feel the catheter and he said no. But he did ask me "where did that come from - did you bring it in with you?" No answer to that.

I will just have to leave what has happened until tomorrow when I hope I can speak with someone who can tell me what is going on. The only good thing is that they have doubled the dose of morphine to 10ml which seems to have got hold of the pain in his hip and leg. They don't give him this as a regular though, he has to ask for it.

Hey ho. This would try the patience of a saint!

Maisie
 
My Bolshie Husband
How awful for you Maisie. It really sounds as if no one knows what they are doing, it's a shame you can't move him to a different hospital somehow, after all this time he should be showing some improvement. Thinking of you. xx
 

shash

shash
My Bolshie Husband
Oh bless I didn't realise he was on morphine. That can have the effects that you are mentioning plus hallucinations. So he could be talking about what he is seeing. You must get to see his consultant . You can contact the consultants secretary to start with. Life is so difficult at times but it sounds like you've got a good head on your shoulders. Also insist you have a printout of every medication he is given.
 

Struggs

Recycled Teenager
My Bolshie Husband
OMG Maisie, what a nightmare this all is for the both of you. Hope you do get to see the consultant and get some sense, but the staff sound totally incompetent! Might be worth mentioning that unless you get some answers and the staff listen to you regarding insulin dosage and times, you will put in a complaint. Thinking of you, take care. Diane x
 

Jaycey

African Refugee
My Bolshie Husband
Poor Maisie, poor hubbie - I wish I could offer advice but this article may help… :noidea:

Methadone: an effective alternative to morphine for pain relief in cancer patients.

Pain management is a central issue in the care of cancer patients in hospice services. Morphine is at present the first line opioid recommended. But when morphine is used in large doses, especially in renal patients, an active metabolite of morphine, morphine-6-glucoronide, may cause delirium and myoclonus and sometimes antagonize the analgesic effect of morphine. Both fentanyl and methadone have some potential advantages over morphine since they are longer-acting and have no active metabolites. However, large doses of fentanyl or long-acting morphine are expensive while methadone has an extremely low cost. We present our retroactive comparative observations in 50 cancer patients. Methadone was found to be as effective as morphine, transdermal fentanyl and common combinations of other opioids in controlling the types of cancer pain presented by patients in a hospice in the Northwestern Region of Puerto Rico. The use of methadone on elderly patients with cancer pain as first line therapy is growing in European and North-American hospices. Hospitals should add methadone to their therapeutic armamentarium and physicians should develop skills to use this long acting opioid…

https://www.ncbi.nlm.nih.gov/pubmed/19227708
 

Kalkan regular

The Golden Girls
My Bolshie Husband
My MIL behaved in a similar way whenever she had a urine infection. We always had to insist they checked her urine and we were always right and once the antibiotics kicked in she reverted to normal. She had dementia but stays in hospital always advanced the condition rapidly.

I would agree you need to ring the consultant's secretary and insist on a meeting so you can air your concerns and hear what he/she has to say.

So much stress for you.
 

A89

Member
My Bolshie Husband
What a horrible situation to be in! I'm so sorry to hear you're going through all this Maisie.
Several posters have advised going to PALS and i'd like to add that when I was having problems with my daughters care PALS were fantastic! They were very kind, understanding and supportive and it really sounds as though you need that kind of support too now. They were on the ward within an hour and helped no end! It was quite comical to see how the staff "jumped to it" when PALS got involved. Go to see them Maisie and tell them everything that you've told us. Make a list of all your concerns and go through them all to make sure they have the full picture of whats going on.

Its nice to see the TLFers once again sending advice, kindness and support to one of our own during a difficult time and I'm sure I speak for us all when I say we hope things start to improve for you and your hubby very soon.
Keep us posted Maisie - we're all with you.

HUGS

alison x
 

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