Dealing with a metaphorical timebomb...

[Earthgirl72]

Hey all.

Firstly - I apologise for moaning / rambling / generally not having a clue what I am talking about!

Dad has vascular dementia - diagnosed in 2013. He's generally well these days. After having his gall bladder out the constant rounds of infections have seemingly stopped. Manages ok on a day to day basis, well outwardly anyway. Scratch the surface though and it's all a bit murkier. He mainly has problems with communication and his short term memory is shot to pieces. He's had a fair few TIAs in recent months but at the moment the main issue is not the dementia but a series of previously unknown heart problems.

As far as I was aware - dad had never had any heart condition. Then, when he had biliary sepsis they discovered he had AF. As far as I can tell, that's quite 'normal' alongside dad's dementia. He recovered from the infection and they started treatment for the AF - ok, I can deal with this I thought.

Then dad started to have the odd fall, I didn't really worry too much, they were few and far between and we were coping. Dad's CPN was replaced and she - to my surprise - said that dad's previous falls could be 'down to the heart failure'. First I had heard about it and it wasn't mentioned again.

Following another fall, the doctor - thoughtfully, not! - said that 'I knew dad was unwell and that he didn't have long'
Erm, I know he's unwell and that life expectancy is affected but no - I hadn't really thought that until then.

We muddled on for a while. The falls continued and dad was eventually hospitalised. Turned out that the AF was out of control and new meds were issued. (Oops this is rambly, sorry if you're still here!)

I'll cut to the chase. Geriatric Medicine team said that it was a damned if you do, damned if you don't scenario. Change the meds for the heart and dad's more likely to have another stroke, minimise the stroke risk and increase the anticoagulant and dad could bleed out if he fell. So we choose : many falls with less risk of bleeding, or bleed more but it could only take one fall to - well, you know. The meds have been changed and changed again, increased dose made dad dizzy all the time, lower dose and he's tired all the time and falling more. The latest 24 hour heart monitoring shows that in addition to the AF, dad has 3 further complications that were not there previously.

This leads me to think back to CPN's rather throwaway comment about heart failure, is this what this is? Is it 'normal'? What do I do? Hence my feeling like I am dealing with a time bomb, except it doesn't have just one fuse, it has many. And I don't know how long they are or how fast they burn.

I am trying to make an appointment to see dad's Dr alone, I just need to know what I am dealing with.

Any advice appreciated, and thank you for reading my witterings.

 

[canary]

Hello @Earthgirl72

Yes, if you have vascular dementia heart/blood pressure/cholesterol problems are the norm as this is what causes vascular dementia. Atrial fibrillation is where the heart isnt working properly and parts of it are not beating at the right time - often beating too fast.

Unfortunately, knowing what is in store for our PWD, what stages they will go through and when, and how long present stages will last is impossible to predict - oh for that crystal ball! Yes do go and discuss things with the doctor, especially about his present condition, but dont expect many definitive answers about the future.

 

[Amy in the US]

What a horribly difficult and complicated situation. I am so sorry you are dealing with this.

At a guess, I would suggest you first need some more information about his current state of health and what treatments are viable options. Then I guess you try to select the course of treatment that will give him the best quality of life and least objectionable side effects. What that looks like, will be very much down to what your dad can best tolerate.

I don't feel I'm saying this at all well, but hope you get the idea. It seems an impossible situation for you and it's always a shock to find out about new (or news to you) health issues, and the dementia makes it so hard sometimes to know what to do. I also hate having to be the one to make these decisions. It's a lot of responsibility and it weighs heavily at times.

I hope one of these doctors or nurses is informed and kind enough, that you can really talk with them and get the information and guidance you need. I often will ask, what they would do, if they were in my position, although that may not be helpful to you in this situation.

I can see where it feels like a many-fused ticking time bomb. You weren't wittering on and we are happy to read your posts. I am just sorry not to be able to offer better advice. I'm so sorry.

 

[Amethyst59]

Another idea that may help is to contact Admiral Nurses. Some areas in the U.K. have them...or you can contact them online. They are there to support carers...but they are all medically trained, so may be able to explain things clearly so you are making decisions from a base of knowledge.

 

[Marnie63]

My mum also has AF, in addition to Vascular Dementia, Type 2 Diabetes and she had a stroke last August! I have had some very frustrating times in the past re meds. I know I'm not a doctor, but when you know and care for someone for a long time, you get a sense of what may or may not be right or needed. Fortunately we have a very good GP that I can have honest conversations with about medication. I had reason to call an ambulance not too long ago as mum had a small stroke which immobilised her completely, and I needed help to move her. Long story short - one of the paramedics was really surprised that mum isn't on a blood thiner. But, I have discussed this at length with the GP, and as each blood thinner requires a layer of Omeprazole in mum's case, as she's had stomach problems all her life, and because Omeprazole will have unwanted side effects in her case, I have agreed with the GP's blessing that there will be no blood thinner. Some of the newer ones (NOACS?) have an increased risk of bleeding anyway, which the GP said would not be a good idea for mum.

Unfortunately, in my experience you really have to be close and on the ball with meds - doctors obviously know more about these things than I do, but we know, and see, the side effects. We, as carers, are better placed to look at the 'whole', and express our views on the side effects, pros, cons, etc. of layering meds.

My mum is 92 and fast declining now, maybe if she was younger and still mobile, I'd be fighting for some kind of blood thinner to prevent further TIAs and strokes. But the GP said no pills will really stop those now. They will probably keep coming due to the damage in the brain expanding. I think sometimes the GP can be more help in looking at the whole, rather than a 'specialist' who just focuses on one issue.

I truly believe too many people with dementia are overmedicated, probably not just dementia sufferers, people in general! I have definitely applied my "I don't want to take any pills unless I have to" rule to mum, but sensibly, with the support of our GP. I could write a whole chapter on the problems that were caused by hospitals prescribing stuff that mum didn't need to stay on long term, but it would fill pages of this thread. I'll stop here!

 

[Jezzer]

Hey all.

Firstly - I apologise for moaning / rambling / generally not having a clue what I am talking about!

Dad has vascular dementia - diagnosed in 2013. He's generally well these days. After having his gall bladder out the constant rounds of infections have seemingly stopped. Manages ok on a day to day basis, well outwardly anyway. Scratch the surface though and it's all a bit murkier. He mainly has problems with communication and his short term memory is shot to pieces. He's had a fair few TIAs in recent months but at the moment the main issue is not the dementia but a series of previously unknown heart problems.

As far as I was aware - dad had never had any heart condition. Then, when he had biliary sepsis they discovered he had AF. As far as I can tell, that's quite 'normal' alongside dad's dementia. He recovered from the infection and they started treatment for the AF - ok, I can deal with this I thought.

Then dad started to have the odd fall, I didn't really worry too much, they were few and far between and we were coping. Dad's CPN was replaced and she - to my surprise - said that dad's previous falls could be 'down to the heart failure'. First I had heard about it and it wasn't mentioned again.

Following another fall, the doctor - thoughtfully, not! - said that 'I knew dad was unwell and that he didn't have long'
Erm, I know he's unwell and that life expectancy is affected but no - I hadn't really thought that until then.

We muddled on for a while. The falls continued and dad was eventually hospitalised. Turned out that the AF was out of control and new meds were issued. (Oops this is rambly, sorry if you're still here!)

I'll cut to the chase. Geriatric Medicine team said that it was a damned if you do, damned if you don't scenario. Change the meds for the heart and dad's more likely to have another stroke, minimise the stroke risk and increase the anticoagulant and dad could bleed out if he fell. So we choose : many falls with less risk of bleeding, or bleed more but it could only take one fall to - well, you know. The meds have been changed and changed again, increased dose made dad dizzy all the time, lower dose and he's tired all the time and falling more. The latest 24 hour heart monitoring shows that in addition to the AF, dad has 3 further complications that were not there previously.

This leads me to think back to CPN's rather throwaway comment about heart failure, is this what this is? Is it 'normal'? What do I do? Hence my feeling like I am dealing with a time bomb, except it doesn't have just one fuse, it has many. And I don't know how long they are or how fast they burn.

I am trying to make an appointment to see dad's Dr alone, I just need to know what I am dealing with.

Any advice appreciated, and thank you for reading my witterings.

Please never apologise! None of us here expected this awful, complicated, baffling disease to come into our lives. It's a rotten learning curve and when you think you understand what's happening, something new and complicated comes along and knocks us sideways again. I can't really add to what @canary and @Amy in the US have already said other than with mum, I too was faced with a decision about medication. Mum was diagnosed with heart failure some 9/10 years ago and prior to her vascular dementia diagnosis. When she was diagnosed just over two years ago, I was told there was medication that was often prescribed but because mum's heart was in such a poor state, these meds would increase her risk of falls and cause "other problems". So it was down to me to make the decision - a position I certainly didn't want to be placed in. I decide against the meds and to this day, I don't know if I did the right thing.
I agree you need to talk to the doctor. I'm so sorry for your situation. Please let us know how things go. Thinking of you.

 

[Toony Oony]

Hi @Earthgirl72 - Poor you and poor Dad. I can appreciate what a difficult position this puts you in, plus it seems as though you have not received much useful information from the powers that be. I had a nasty hunch that in your Dad's case a cardiac specialist would advise one thing and a geriatrician something else. If your GP is good and knows Dad well, I would second the suggestion to ask their advice. He/she may have a more reasoned approach and will better know your Dad's situation.

I had AF and it's horrid, so I can really feel for your poor Dad who may not be able to fully express how it makes you feel. Basically it's when the electrical 'wiring' in your heart goes a bit wrong. It does not necessarily mean that there is a problem with the heart itself, rather that it 'misfires' causing irregular and rapid heart beats. It is this irregularity that can cause blood to pool slightly in a chamber (usually one of the 2 top ones) which heightens the risk of clotting and a clot causing a stroke. Apart from its debilitating nature, the main issue with AF is the greatly increased stroke risk.
A surgical procedure freezing part of the heart sorted mine out, but that would not be an option.

Sadly I can offer no useful advice, only to mention that I was on blood thinners pre-op and the Coag clinic were very careful to ensure that I kept within certain parameters. I had very regular blood draws and never bled uncontrollably and dangerously (even from the groin artery used for my op). Unfortunately, I believe that in the case of elderly patients it often tends to be a 'one size fits all' dose, and blood thinners work at different levels on different people, plus food and medication also affects the way they work. It is not an exact science unless carefully and frequently monitored.

You are left in an unenviable position. All I can say is that for my Mum (PWD), I am now concerned more with the quality of the time she has left, rather than the quantity.

I do hope that somebody gives you some sound and appropriate advice, and meanwhile my thoughts are with both you and your Dad.

X

 

[Earthgirl72]

Hello @Earthgirl72

Yes do go and discuss things with the doctor, especially about his present condition, but dont expect many definitive answers about the future.

Hi @canary I have an appointment later today. As for expecting definitive answers, don't worry I'm not! I have come to learn that there is no such thing. I'm just hoping that they can just tell me how best to deal with it all. And to discus some of the other more 'icky' side effects of dad's dementia - which for the sake of propriety I won't list here!

 

[Earthgirl72]

I don't feel I'm saying this at all well, but hope you get the idea. It seems an impossible situation for you and it's always a shock to find out about new (or news to you) health issues, and the dementia makes it so hard sometimes to know what to do. I also hate having to be the one to make these decisions. It's a lot of responsibility and it weighs heavily at times.

@Amy in the US You said it perfectly well! I also hate being the one to make decisions. The way they leave it with you and you don't realise until you've left (in my case!) how big and important they are! I seem to spend a lot of my time either frowning (oh the frown lines.. if only I had time to moisturise lol) or with a facial expression much like this -

We shall see what the dr says later. I am not expecting much though.. the last few years have taught me not to!

 

[Earthgirl72]

Another idea that may help is to contact Admiral Nurses. Some areas in the U.K. have them...or you can contact them online. They are there to support carers...but they are all medically trained, so may be able to explain things clearly so you are making decisions from a base of knowledge.

Thank you @Amethyst59 I spoke to the Admiral nurses before when Dad was in hospital, I shall talk to them too!

 

[Earthgirl72]

Unfortunately, in my experience you really have to be close and on the ball with meds - doctors obviously know more about these things than I do, but we know, and see, the side effects. We, as carers, are better placed to look at the 'whole', and express our views on the side effects, pros, cons, etc. of layering meds.

Thank you @Marnie63

You're not kidding! I feel like I ought to be qualified to dispense meds by now, and shock myself with how the names just roll off the tongue! Dad is on blood thinner - changed from clopidogrel to apixiban, omeprazole, bisoprolol which was changed from digoxin. Add to that the ever changing dosage, and me frantically trying to change them all over. If they brought the Krypton Factor back and had a challenge involving switching pills from an incorrect blister pack to a dosette box I'd be in with a shot of victory!

While dad was on the higher dose of bisoprolol, some of the nastier side effects of the dementia were reduced but he was constantly dizzy. It's a constant case of juggling them all.

 

[Earthgirl72]

Please never apologise! None of us here expected this awful, complicated, baffling disease to come into our lives. It's a rotten learning curve and when you think you understand what's happening, something new and complicated comes along and knocks us sideways again. I can't really add to what

Hi @Jezzer , thank you!

It's hideous! As soon as I think I have an idea on one aspect, someone comes along and adds 3 more things that will not only complicate the original issue but bring forth more of their own issues. It's like spinning plates - if the plates are on fire, and I am riding a unicycle whilst spinning them!

 

[Earthgirl72]

Hi @Earthgirl72 -
I had AF and it's horrid, so I can really feel for your poor Dad who may not be able to fully express how it makes you feel. Basically it's when the electrical 'wiring' in your heart goes a bit wrong. It does not necessarily mean that there is a problem with the heart itself, rather that it 'misfires' causing irregular and rapid heart beats. It is this irregularity that can cause blood to pool slightly in a chamber (usually one of the 2 top ones) which heightens the risk of clotting and a clot causing a stroke. Apart from its debilitating nature, the main issue with AF is the greatly increased stroke risk.

Thank you @Toony Oony. Firstly for explaining AF much better than any of dad's doctors have! The complication we have with it is that for some reason - probably dementia changing brain or something - I have no real idea - dad is not aware of it. Even when his heart rate is upwards of 169 bpm, he doesn't feel anything. He gets up, blood pressure falls ( I think I am getting this the right way round?) and he falls. The nurses were quite in awe (as was I) of his being oblivious to what was happening as we watched the monitor!

I agree, my dad is only 76 but I would far rather have him have less time if it is quality time, than to prolong his life to the detriment of his happiness. I just wish I knew how best to do that.

Still, I have an appointment with his GP later on, and one with Geriatric team tomorrow so might learn something... Or more likely - they will both contradict what the other has said and I'll be even more confused

Watch this space!

 

[canary]

Hi @canary I have an appointment later today. As for expecting definitive answers, don't worry I'm not! I have come to learn that there is no such thing. I'm just hoping that they can just tell me how best to deal with it all. And to discus some of the other more 'icky' side effects of dad's dementia - which for the sake of propriety I won't list here!

I will say @Earthgirl72 that I have learned more from this forum than from any doctor - especially when it comes to knowing how to deal with things

 

[Marnie63]

I will say @Earthgirl72 that I have learned more from this forum than from any doctor - especially when it comes to knowing how to deal with things

Me too canary, that's why it's invaluable as a source for anyone close to dementia. One would hope that the odd 'professional' many learn from it too. Maybe.

 

[Jezzer]

I will say @Earthgirl72 that I have learned more from this forum than from any doctor - especially when it comes to knowing how to deal with things

May I add my agreement to the posts from @canary and @Marnie63. TP is invaluable to me.

 

[Earthgirl72]

Well, appointment with the doctor went surprisingly well - I think.

Heart meds are just a work in progress, it's a case of finely adjusting them to work as best they can.

We have the Geriatric Team appointment later today - no doubt they will want to change something else, they generally do

Unlike previous times, and perhaps because it was just me without dad, the Dr was able to talk more frankly about him. He said that the dementia was 'well established' which means very little to me, apart from making me have a mental image of my dad as a nice plant, rather like my straggly Rosemary bush (irony of Rosemary being for remembrance there..) That he had a 'dicky heart' and was becoming increasingly physically unwell. Tell me something I don't know...

He offered a new medication - to stop dad's ahem - need to watch certain types of online entertainment shall we say? Which he does a lot, with no regard for anyone coming to the house. I have had to stop my daughters going with me, a lot of the time I just leave the meal on his foot stool and do not approach the kitchen. Dad's half deaf so believe me it's incredibly loud. It would be a covert prescription, and although it would make my life easier, I am a bit loathe to do so as it's sneaky?

Dr has said that it might literally be the only pleasure he has left. I am trying to be the bigger person, and have said I shall turn a blind eye (and hopefully a deaf ear...) to it. I will only visit at set times and until dad does his 'thing' when he knows I am going ( he still is aware of time, and remembers when I am going by leaving him notes on the whiteboard) or he starts taking it outside / or it affects others. Then we shall see.

I have said to the Dr that I really don't like going down alone but I have to. Dad is occasionally confused as to who I am, and muddles me with my mum. In fact he told the CPN he'd like a 25 year old me to live with him... To be honest I find the whole thing a tad icky. I know it's a natural urge but do I really need to know about it? It's definitely affecting my relationship with him.

Dr picked up on that and said that actually - dad is coping remarkably well with his dementia - none of his behaviours offend him and he can't see why anyone else would mind. It's me that is having difficulty. Erm no **** Sherlock. It's a little wearing when your father doesn't understand he needs to wear his lifeline - certainly he doesn't know what to do with it! And sits calmly chatting with the smoke alarm going off. Then, develops a habit of constantly removing the smoke alarm in the hall (the only one that apparently goes off despite being interlinked to the other 2 and the one that lights up in the bedroom )

Sorry - I am wittering again.

Anyhoo.... The Dr is going to refer dad back to Mental Health Team. Whatever that means. So watch this space.

 

[canary]

Have you taken over paying your dads bills? If so, do you have access to his internet provider?
If you do, you could access his on-line account and switch on the parental controls.
Ive had to do this for my OH - I couldnt stand living with it.

 

[Jezzer]

Well, appointment with the doctor went surprisingly well - I think.

Heart meds are just a work in progress, it's a case of finely adjusting them to work as best they can.

We have the Geriatric Team appointment later today - no doubt they will want to change something else, they generally do

Unlike previous times, and perhaps because it was just me without dad, the Dr was able to talk more frankly about him. He said that the dementia was 'well established' which means very little to me, apart from making me have a mental image of my dad as a nice plant, rather like my straggly Rosemary bush (irony of Rosemary being for remembrance there..) That he had a 'dicky heart' and was becoming increasingly physically unwell. Tell me something I don't know...

He offered a new medication - to stop dad's ahem - need to watch certain types of online entertainment shall we say? Which he does a lot, with no regard for anyone coming to the house. I have had to stop my daughters going with me, a lot of the time I just leave the meal on his foot stool and do not approach the kitchen. Dad's half deaf so believe me it's incredibly loud. It would be a covert prescription, and although it would make my life easier, I am a bit loathe to do so as it's sneaky?

Dr has said that it might literally be the only pleasure he has left. I am trying to be the bigger person, and have said I shall turn a blind eye (and hopefully a deaf ear...) to it. I will only visit at set times and until dad does his 'thing' when he knows I am going ( he still is aware of time, and remembers when I am going by leaving him notes on the whiteboard) or he starts taking it outside / or it affects others. Then we shall see.

I have said to the Dr that I really don't like going down alone but I have to. Dad is occasionally confused as to who I am, and muddles me with my mum. In fact he told the CPN he'd like a 25 year old me to live with him... To be honest I find the whole thing a tad icky. I know it's a natural urge but do I really need to know about it? It's definitely affecting my relationship with him.

Dr picked up on that and said that actually - dad is coping remarkably well with his dementia - none of his behaviours offend him and he can't see why anyone else would mind. It's me that is having difficulty. Erm no **** Sherlock. It's a little wearing when your father doesn't understand he needs to wear his lifeline - certainly he doesn't know what to do with it! And sits calmly chatting with the smoke alarm going off. Then, develops a habit of constantly removing the smoke alarm in the hall (the only one that apparently goes off despite being interlinked to the other 2 and the one that lights up in the bedroom )

Sorry - I am wittering again.

Anyhoo.... The Dr is going to refer dad back to Mental Health Team. Whatever that means. So watch this space.

Well, appointment with the doctor went surprisingly well - I think.

Heart meds are just a work in progress, it's a case of finely adjusting them to work as best they can.

We have the Geriatric Team appointment later today - no doubt they will want to change something else, they generally do

Unlike previous times, and perhaps because it was just me without dad, the Dr was able to talk more frankly about him. He said that the dementia was 'well established' which means very little to me, apart from making me have a mental image of my dad as a nice plant, rather like my straggly Rosemary bush (irony of Rosemary being for remembrance there..) That he had a 'dicky heart' and was becoming increasingly physically unwell. Tell me something I don't know...

He offered a new medication - to stop dad's ahem - need to watch certain types of online entertainment shall we say? Which he does a lot, with no regard for anyone coming to the house. I have had to stop my daughters going with me, a lot of the time I just leave the meal on his foot stool and do not approach the kitchen. Dad's half deaf so believe me it's incredibly loud. It would be a covert prescription, and although it would make my life easier, I am a bit loathe to do so as it's sneaky?

Dr has said that it might literally be the only pleasure he has left. I am trying to be the bigger person, and have said I shall turn a blind eye (and hopefully a deaf ear...) to it. I will only visit at set times and until dad does his 'thing' when he knows I am going ( he still is aware of time, and remembers when I am going by leaving him notes on the whiteboard) or he starts taking it outside / or it affects others. Then we shall see.

I have said to the Dr that I really don't like going down alone but I have to. Dad is occasionally confused as to who I am, and muddles me with my mum. In fact he told the CPN he'd like a 25 year old me to live with him... To be honest I find the whole thing a tad icky. I know it's a natural urge but do I really need to know about it? It's definitely affecting my relationship with him.

Dr picked up on that and said that actually - dad is coping remarkably well with his dementia - none of his behaviours offend him and he can't see why anyone else would mind. It's me that is having difficulty. Erm no **** Sherlock. It's a little wearing when your father doesn't understand he needs to wear his lifeline - certainly he doesn't know what to do with it! And sits calmly chatting with the smoke alarm going off. Then, develops a habit of constantly removing the smoke alarm in the hall (the only one that apparently goes off despite being interlinked to the other 2 and the one that lights up in the bedroom )

Sorry - I am wittering again.

Anyhoo.... The Dr is going to refer dad back to Mental Health Team. Whatever that means. So watch this space.

Hi there and you are not wittering at all. Im sure your dad's "entertainment" doesn't bother the doctor. He's not a daughter caring for her dad is he? What a plonker (the GP not your dad!) Of course you don't want your daughters with you when he's watching this material and I can understand how it's affecting your relationship. I have to say you are doing an amazing job, especially with the "problem". I guess it may be your dad's only remaining enjoyment; it's just a shame it's happening. Good luck with the Geriatric Team & please keep us posted. Take care & Well Done You! x

 

[Jezzer]

Hi there and you are not wittering at all. Im sure your dad's "entertainment" doesn't bother the doctor. He's not a daughter caring for her dad is he? What a plonker (the GP not your dad!) Of course you don't want your daughters with you when he's watching this material and I can understand how it's affecting your relationship. I have to say you are doing an amazing job, especially with the "problem". I guess it may be your dad's only remaining enjoyment; it's just a shame it's happening. Good luck with the Geriatric Team & please keep us posted. Take care & Well Done You! x

ps Brill suggestion from @canary