stopping blood thinner because of risk of falls

[hollyrobs]

Hi, my father has AF and has been on Rivaroxaban for years, he is in late stages of dementia and has been in hospital since November. We have had awful trouble finding him a nursing home that will accept him, due to risks of falls and potential bleeding because of the blood thinner (rivaroxaban). Unknown to me, they have stopped his Rivaroxaban this week and now a nursing home is willing to take him..because the fall/bleeding risk has now been eliminated, thus freeing up a hospital bed and not bed-blocking. He is obviously now at greater risk of a stroke...I feel so torn, hope someone can advice me. Thank you

[jeanjeannie50]

How old is your father, I'm hoping he's a good age? Perhaps the risk of a brain/internal bleed was higher than the stroke one, especially if he's likely to have falls. Don't beat yourself up about this, a decision has been made on your behalf and lets face it one had to be made.

Go with what has been recommended and feel no guilt, the experts have decided what is best.

Best wishes

Jean

[10gingercats]

This seems a decision to be made by your fathers GP or the social services to sort or you may be going around in circles for a long time trying to solves these problems alone.

[Hidden]

Hello, hollyrobs, and welcome.

We swing one way and then another on the anticoagulation front. Younger people are more at risk of a serious bleed than those over 65 who, from that age, have the threat of stroke to a greater degree. As we age further the benefits of anticoagulation fade again. The likelihood of instability, falls and fractures and broken bones increases.

Risks are not certainties. They are mythical things that frighten us, possibilities - thought up by statisticians - of dire fates. All we can do is go with what feels the best - or less bad. Some people - and let's hope your father is one - will never have a stroke or a bleed and some have been very lucky not to have one or the other.

[JaneFinn]

Oh holly I feel for you so much. (My mum has dementia and I know how hard it is wanting the best for her- and not knowing what the best is.)

It sounds like you fear some external decision has been made about his medication not based on his best interests, but simply to solve a practical hospital-bed-clogging problem. And it certainly was bad they made it without discussing it with you. (You could take this up with the Hospital if you wanted.)

BUT as others have said, the ‘anticoagulate or not’ decision is all about potential risk, not certainties. And my feeling is that quality of life for someone in late stage dementia is all about quality of care - how he is treated as a person, looking after his daily physical and emotional needs with kindness, patience and understanding etc.

So if you feel this nursing home (the one that will take him if he’s not on the rivaroxaban) will give him the kind of quality of care that will help him live the rest of his life feeling as loved and peaceful as possible, then personally I think you should feel reassured that the best decision has been made. (However it was made!)

And please please don’t feel guilty if he has a stroke. No one knows what’s ahead- we make the best decisions we can, in the situations we’re presented with. Your dad obviously has a daughter who loves him very much - that’s what he needs, and it counts for everything.

Sending love and prayers. Do keep us posted x

[CDreamer in reply to JaneFinn]

Excellent post!

[hollyrobs in reply to JaneFinn]

thank you Jane x

[CDreamer]

It is a very difficult dilemma for you.

Given his advanced dementia I would look at it as a matter of priorities - as of now and the known Givens - what are the most urgent concerns?

Finding him a suitable place in a nursing home where with good care for his dementia

or reducing the risk of a possible bleed from a possible fall?

If I were in your father’s position I would far rather die suddenly of a stroke from a fall than gradually lose my faculties.

What do you think your father might say? How might he view this? You may not be able to ask him but could you make a guess at what he would want?

Sorry if that is a bit blunt.

[BobD Volunteer]

Life is about risk management. If the risk of injury (inter-cranial bleeds etc ) from falls is greater than the risk of thrombotic stroke (which it now obviously is ) then the balance is towards not anticoagulating.

Look at it this way. AF makes us five times more at risk of thrombotic stroke. Falling and banging one's head may only increase stroke risk a small percentage but if those falls are becoming very regular the risk of haemorrhagic stroke overtakes the risk of thrombotic stroke by a long way. Remember that are two types of stroke.

[rosyG]

you need to get a second medical opinion on this- it's been shown lots of falls are needed before s a series bleed occurs

[cassie46]

Hi there - My Dad was on warfarin for about 10 years and in the last few years while at home he had many falls some with heavy bleeds needing to go to hospital. On his last stay in hospital when it came to discharge we felt he was unable to go home (we had 3 times daily care workers but this was not enough) so it was decided that it would be best if he went into a care home.

The hospital had said that he did not need nursing care so we found a lovely care home that was happy to have him even though he was on warfarin (I have not heard of a care home refusing because of warfarin). It is difficult finding the right home some people have to have nursing care, they are more expensive and not as many to choose from. The care home that we chose was brilliant, very caring and a lovely happy place to be. About two months into his stay he did come off Warfarin because he was bruising so badly, just a slight knock and he would bruise badly. All the bruising went after a few months. He did not have a stroke but died 8 months after moving to the care home from old age really he was 94.

I think you should have been involved with the decision with his medication, but it sounds as if might be the best decision. There were quite a few residents with dementia in his care home and they were well cared for and looked after. I hope he settles in well, it will give you some piece of mind that he we be well supervised.

Cassie

[Geonome]

Hi, Hollyrobs.

I obviously don't know your father, but I thought it might help if I related my experience with my mother. She was on an anti-platelet drug for several years, and had a fall approximately once a month. We think her many falls were caused by her very poor vision due to macular degeneration. One of her worst falls caused a brain aneurysm, which almost killed her. The decision was made then to discontinue the antiplatelet drug (I think it was Plavix), due to her high risk of falls. A side note: she was on Plavix instead of Warfarin because it was considered safer, and cause less bleeds.

She went to a nursing home approximately 6 months later. She fell 5 times the first week she was there, but no bleeds, and no fractures. She did not have a stroke, and died peacefully in bed at the age of 92. In hindsight, I know that it was a wise decision to discontinue the Plavix.

I hope this helps.

Geonome

[Bagrat]

It must have been hard for you that this decision was made without discussion, however,it seems to have been made with your father's best interests at heart. No medication is a perfect answer and as people get older medication reviews are very important for the reasons already mentioned. I hope your father settles into his new home and you feel reassured that he is safe and cared for.

[momist]

My own personal experience of this dilemma may only confuse you. However, here goes.

My father in law suffered a series of falls at the age of 81, and the final serious one (down the stairs at home) resulted in a subdural haematoma. This was treated by three operations to relieve the pressure in his skull, but they were only partially successful. As we age, the brain shrinks slightly and the connections to the vascular system on the lining of the skull get stretched and therefore more vulnerable to a blow to the head. Old people therefore die more easily.

From the date of his serious fall, to his death, was nearly a year. A year of hospital visits and watching him gradually dwindle away. His personality changed, his memories faded, he lost his religion, he lost his friends. I would rather go with a stroke any day.

Having said that, I take anticoagulants due to my AF. But if I was at risk of falls, I, as a personal decision, would stop taking them.

[hollyrobs]

Thank you all so much! Taking time to reply with your thoughts, advice and experiences has overwhelmed me......I was feeling so alone with dad's ongoing problems, your replies have certainly helped me look at the bigger picture.

Dad is 90, has vascular dementia and practically bedridden. Since being in hospital last November, it just seems one battle after another to find a place that will meet his needs. The NHS have decided to fund him for 6 weeks in a EMI nursing home to assess him to then see if he is entitled to Continuing Health Care. Unfortunately there are only 5 of these homes in the county, three I wouldn't put my dog in and the other 2 couldn't meet his needs....until they took dad off Rivaroxaban on Tuesday....then one of the better ones accepted him.

I think the whole experience of him being in hospital, me not being involved it lots decisions and also being expected to accept sub-standard nursing homes purely to 'move him on' has made me very suspicious.

I have a meeting with the doctor this afternoon, I'm sure he will justify his reasons for taking dad off Rivaroxaban, but I would like to know if he would have left him on Rivaroxaban it if the nursing home had accepted him on it.

Again, thank you all x

[cassie46 in reply to hollyrobs]

Hi again hollyrobs - My family have been through what you have been going through. My Mother was admitted to hospital in October 2015 suspected TIA - she was already more or less bedridden but had carers at home. When it came to discharging her we also had to go through all the procedures and form filling which took several months. As per your experience some of the care homes offered were terrible, I remember the smell of many of them was appalling and cramped rooms and corridors. She eventually went into a care home as she was considered to be end of life by then,this was paid for by the NHS.

This was agreed by one of my sisters, I live five hours drive away and was not always there for these decisions this place I hated, it was a fairly modern built but almost utility built, corridors very narrow, ceilings very low and rooms very small. Nice enough staff but I felt I could not get out quick enough into space and air. She died there in early January 014.

A week after the funeral my Dad ended up in hospital, just for a blood transfusion but as per my previous reply when discharged he went straight into a care home. This time I insisted that we pay for this, because of his pensions he would not have been entitled to council help so I found the best I could at a reasonably cost. When later he did need proper nursing care the Palliative nurses were happy to come when ever they were called at short notice. The care home also accepted this arrangement rather than sending to another nursing home with nursing facilities. They did have two registered nurses at the care home but this is not enough for to be given status as a nursing home.

I myself am on Riviroxaban but I have heard a few times that as you get older (I am 71) into your eighties they do review anticoagulants for few reasons one is weight as many older peeps have low body weight. I will wait and see if I get to that age lol

As above I understand your frustration having communicate with hospital admin, social services and quite a few other departments.

I also feel for the staff who have to try and secure beds when they have a back log of elderly patients just waiting for the right care packages to get them on their way. As things stand at the moment it will most definatlely get even worse. So I lost both parents in 2016 plus a much loved aunt in the June - it was the last of a generation in our family.

I wish you and your family all the best in difficult times.

Cassie.

[irene75359]

My mother (97 this year) was taken off nearly all her medication two or three years ago after a fall. She was diagnosed with AF at that time, but is asymptomatic and decided not to take any medication. She has had three TIAs but has always bounced back, but we are well aware (as is she) that the next may be a massive stroke. It could be that even without the pressure of the nursing homes, your father's GP may have taken him off Rivaroxaban as he got older and became more frail.

You have been caught between a rock and a hard place and I really feel for you. But if your Dad has gone into a good home and he has all of you looking out for him, I think he has got the best outcome. Please don't be so hard on yourself, and do let us know how you and he get on.

[hollyrobs in reply to irene75359]

Thank you Irene :o)

[Hidden]

Any doctor altering treatment solely to unblock a bed would risk being struck off by the GMC.