Pulling everything together

[canary]

Hello @Pipeth
The symptoms described in the FTD factsheet occur because of the part of the brain (frontal lobe) that is damaged. You can get similar symptoms if there is damage to this part of the brain from other things too, eg behavioural variant Alzheimers, or Vascular dementia that affects the frontal lobe. A Cavernoma (as Im sure you know) is extremely rare and if its in the frontal lobe its not surprising that the majority of the symptoms come from this area.

 

[canary]

Thank heaven for good friends, we shall need them now.

Absolutely. Have you been able to tell your friend the diagnosis? As he was able to see the problems for himself he may have worked it out for himself, but if not, telling the diagnosis would be an explanation

Your remark about sanity rang bells because I began to wonder if I was going mad, especially when he merrily says all sorts of things to other people as if perfectly normal which they swallow up when I know it is all incorrect,

Yes, I agree, this is one of the hardest things, especially when they then dont believe what you you say, because he "looks fine" to them The diagnosis validates you; you are not going mad - there really is something wrong.

 

[annierich]

All his little foibles now seem to join the dots of his condition. When I asked him what he discussed with the doctor the other day, he replied ‘alcohol’. He had clearly been impressed by that and then I asked him how many units he could have per week. He kept guessing incorrectly. The consultant said that he was not going to say no alcohol even though that is preferable but that he must (i.e. I must) restrict it to 14 per week. He questioned him closely on what he was drinking and estimated that he must be having at least 20 probably 30 units per week. When I asked him if he could remember what the doctor said he had, he said that there was nothing wrong with him, but on closer discussion said that he had pre-Alzheimer’s, even though I know that it has moved on a bit from that. So he accepted that without trouble. Today my son called after I left him a message to do so, and we had a valuable discussion about treatment and support but I said that Dad is the same person with various difficulties and we must carry on as normal, which I think the Alzheimer’s website advises. He took it in and has some knowledge of the disease because his MIL has Vascular Dementia, lives alone with support and has an active life. I have decided that we must have a holiday if only to give me a break and I have booked a cruise which he is enthusiastic about. Nothing much has changed except that it has all changed, and I realise that everything truly has come together into a condition only explained by Alzheimer’s disease. I have become increasingly aware that he is anxious if I am not with him as the day wears on and I cannot leave him alone in the evenings when he is at his most vulnerable. He has been recommended one of the drugs and the nursing team notified so I feel that he is now ‘in the system’, for future reference. The future is unknowable and reading through the forums can vary hugely, so day by day we keep going. It is daunting and I still feel the shock.

Hi again. I’m a bit concerned about your choice of holiday. On a cruise the bars will be open for long hours and I don’t think it will be very relaxing for you if you have to shadow him all the time to monitor his alcohol intake.

 

[Grahamstown]

@annierich I do appreciate your comments which are very relevant and I did think of that but must admit I thought to hell with it, I would like to go and I realised that I would have to be vigilant. The drinks are so expensive on our cruise in October and are not included (deliberate choice) and he will be fatigued by the excursions so hope that he will not be wanting more than the small glass he is allowed. I probably hope in vain but it’s just as bad at home. When I had the diagnosis confirmed, I knew we had to do things while we could and I really wanted a spring break too so I went for broke and booked a spring cruise too on the basis that we don’t know what a year will bring and he is keen and able at present. That is all inclusive so I am banking on fatigue to sort that out and I have just to get him from 5-8 pm. He is a relatively fit man for his age, 79, and the dementia is the only issue, so he could go on a long time. I do feel very fatigued now after last week but I have organised for one of his pals to go to lunch with him on Saturday, take him and bring him back, so I can have a mental break. Well time will tell and in the meantime it is one small glass a night at 1.5 units with a bit extra at the weekend. He has latched onto the doctor saying he could have ‘one small glass’ the trouble being that he tops it up. Hey ho and away we go!

 

[Grahamstown]

Hello @Pipeth
The symptoms described in the FTD factsheet occur because of the part of the brain (frontal lobe) that is damaged. You can get similar symptoms if there is damage to this part of the brain from other things too, eg behavioural variant Alzheimers, or Vascular dementia that affects the frontal lobe. A Cavernoma (as Im sure you know) is extremely rare and if its in the frontal lobe its not surprising that the majority of the symptoms come from this area.

This is what our friend wrote to me today which puts it very well I think: he ‘is very much not the same but he is still somehow the same’, probably as good a description of the effect of ADM as any.

 

[Pipeth]

Hello @Pipeth
The symptoms described in the FTD factsheet occur because of the part of the brain (frontal lobe) that is damaged. You can get similar symptoms if there is damage to this part of the brain from other things too, eg behavioural variant Alzheimers, or Vascular dementia that affects the frontal lobe. A Cavernoma (as Im sure you know) is extremely rare and if its in the frontal lobe its not surprising that the majority of the symptoms come from this area.

Thank you Canary, the cavernoma was briefly mentioned by the memory clinic, saying they will investigate it. We were told by a neurologist previously that she thought it was not causing a problem. However the same neurologist told me that my cerebral aneurysm had disappeared, later being confirmed as an error. I am keeping an open mind,gathering knowledge from here so I will be able to ask more questions at the next appointment, my hubby is deteriorating in behaviour, memory and losing language. I didn't know a cavernoma was rare, more useful information.

 

[canary]

I didnt know what a cavernoma was, @Pipeth so I googled it and found this site
https://www.cavernoma.org.uk/about-cavernoma/

 

[Grahamstown]

I have found another little trait, described on another thread, which drives me mad, and that is the tendency to laugh inappropriately. So that is another thing to put down to the disease and not to say ‘why are you laughing, it isn’t funny’ to. On a good note, he announced yesterday afternoon that he was going to have an alcohol free day. By 5.30pm he was putting his shoes on to go for a half. I reminded him of his decision and after a long ‘discussion’, he decided to stay home and by careful persuasion he did manage to have some soft drinks only. He can remember what the consultant said and his friend of the previous day so the full weight of the discussions did prevail.

 

[Grahamstown]

After keeping a tight rein on him in the evenings for nearly two weeks, giving us a brief and wonderful respite from too much alcohol, I now know what it would be like to let him have his way. I know beyond a shadow of a doubt, if I didn’t know it before, that he will find a drink of alcohol somehow. Last night he went off to the pub at 5pm, said that’s all he would have and I decided to go to the cinema. When I got back I found that he had drunk the equivalent of a bottle of wine plus whatever he had at the pub. He was his usual ingratiating self after drink but I said he should go to bed straight away and he did. So I cannot leave him alone in the evenings any more and I now feel completely trapped. Sunsetting and alcohol is a fatal combination, and together with losing his driving license, his weakening hands, his worsening memory, he must be feeling wretched. In my mind I wonder how long he can go on before he collapses again. I paid a high price for my evening but knew in my heart that this is what he would do because although now there is nothing in the house he can still get it. It was pitiful at the doctors appointment when he said he was fine and still doing his research and then couldn’t remember why he had gone. Afterwards he said that the doctor didn’t do anything and it was a waste of time. I did get the form filled in to allow them to talk to me so another small change has happened.

 

[Grahamstown]

I felt so mentally and physically exhausted after a bad night following the evening so after I posted I went back to bed, told him to go downstairs and went back to sleep for a few hours. I feel ready to face another day of looking after him, keeping him as safe as possible and trying to keep it all together. It will be tough but as we all know, he can’t help it, doesn’t know what he is doing and won’t remember before too long!

Two hours later and my comment that he wouldn’t know what he did is correct. I asked him about last night, he remembered that he had had a pint of beer, and he knew that he had had 2 glasses of rosé, but after that his mind is blank and he, genuinely I think, did not remember bringing back the bottle of red, opening it, and it had a cork, and having a couple of glasses of that. I have sent him off to his lunch place with his friends, and he is quite capable of taking himself there and back, and can prepare myself for the evening. I have given him a written list of guidelines and he read them out and said he agrees. He doesn’t hear when I tell him so I wrote them down. Has anyone else tried this?

 

[canary]

He doesn’t hear when I tell him so I wrote them down. Has anyone else tried this?

Yes, I do this.
I think that when I talk to him he cant process the words quickly enough and he misses a lot of what is said; but if I write it down he can read it at the speed at which he can process it. It also means that he has it to look at later to refresh his memory.

 

[Grahamstown]

Harmony restored and a much more settled day today. He agreed that he had slept much better last night, no alcohol! I created a list which he read and agreed with yesterday but he still forgets it. This evening he started wanting to do what we had agreed he wouldn’t, so he read the list and said ‘oh yes of course’. I saw somewhere else that their PWD liked to watch Pointless, so tonight I have put it on and much to my surprise he is enjoying it. I hope that will distract him during the difficult 5-6pm time.

 

[Grahamstown]

Interesting evening when he put his shoes on, announced he was going out for a pint, it’s gone up to a pint now, and I said no you are not because I have to keep you safe at home, very firmly several times in response to repeated requests which he finally gave in to, sulking and complaining and then stopped and had a happy enough evening. It was almost as if he was testing boundaries like a child and really wanting to be restrained from self harm. I didn’t lose my temper or say horrible things to him, but just stuck to my guns and said no very firmly. It would be lovely to say go out and for me to have a quiet time but it would not be safe for him. It is relentless but if I can stick it out for about an hour then it’s all over. Thanks to all for the suggestions which I have acted on, resorting to the most outlandish and devious methods of removing bottles from his sight. TP is a fantastic resource and always there through thick and thin. He really can’t remember what is happening from one day to the next so has a false illusion of what he does from day to day which makes life very difficult as he accuses me of preventing him from doing anything he wants to do. The fact that he has manoeuvred his life to conform to exactly what he wants to do now, except drink as much as he wants, escapes him. That is one of the issues with this disease, that you have to act in a completely selfless way which is totally invisible to anyone, and can never be known by the person you are caring for. Only by sharing it with fellow carers can you get understanding.

 

[carolynp]

Interesting evening when he put his shoes on, announced he was going out for a pint, it’s gone up to a pint now, and I said no you are not because I have to keep you safe at home, very firmly several times in response to repeated requests which he finally gave in to, sulking and complaining and then stopped and had a happy enough evening. It was almost as if he was testing boundaries like a child and really wanting to be restrained from self harm. I didn’t lose my temper or say horrible things to him, but just stuck to my guns and said no very firmly. It would be lovely to say go out and for me to have a quiet time but it would not be safe for him. It is relentless but if I can stick it out for about an hour then it’s all over. Thanks to all for the suggestions which I have acted on, resorting to the most outlandish and devious methods of removing bottles from his sight. TP is a fantastic resource and always there through thick and thin. He really can’t remember what is happening from one day to the next so has a false illusion of what he does from day to day which makes life very difficult as he accuses me of preventing him from doing anything he wants to do. The fact that he has manoeuvred his life to conform to exactly what he wants to do now, except drink as much as he wants, escapes him. That is one of the issues with this disease, that you have to act in a completely selfless way which is totally invisible to anyone, and can never be known by the person you are caring for. Only by sharing it with fellow carers can you get understanding.

Yes exactly: having to act in a completely selfless way, which is totally invisible to anyone.” To which I would only add, “And somehow stay calm”!

While we were in Sydney, which was hard enough on its own, OHs sister became dangerously ill in Melbourne. Our son is a doctor, so her daughters called on him for support. Gradually we worked out a chain of communication which spared the daughters: the older one would talk to, or text our son, and he would update me, and I would then explain, in a gentle (I trust!) and manageable way, to my OH. Naturally it was stressful but I was so glad to be able to contribute. Now we are home - me with a bad cold, inevitably! - OH has access to our landline phone, and keeps wanting to call the Melbourne family. I explained over and over about the system we’d set up - tried The List strategy - for which many thanks - then found that, as soon as I go for a walk, he is calling - not even the daughters, but his sister! Twice a day.

I got so irritated and worked up but now I am unwell have had to let this go. I keep trying to extend myself far enough to protect others, leaving myself uncared for. OH registered yesterday I was ill but today has completely forgotten - and in any case, his extremely unwell sister is preoccupying him exclusively, naturally enough.

I noticed this morning that another family member answered the sister’s phone, so maybe they have worked out a way of fielding his calls. I heard her asking OH to please call another number - but I doubt he’ll remember - and I don’t feel well enough to intervene any more at present.

So frustrating, all this, and so annoying! Silently I seethe!

 

[Grahamstown]

It’s the little things that count, living with someone you are aware of the minutiae of daily life and this is what makes or breaks a relationship. When you start getting irritated by things that used to be endearing that is the beginning of the end. That’s as good a description of living with a PWD as I can come up with. Except, and it’s a big except, when it’s your loved one you can’t escape easily. He is now having trouble putting the different categories of rubbish in the correct recycling bin, a job which he likes to do and which I now have to check. A small thing compared with the difficulties of others but another small step.

 

[carolynp]

O

It’s the little things that count, living with someone you are aware of the minutiae of daily life and this is what makes or breaks a relationship. When you start getting irritated by things that used to be endearing that is the beginning of the end. That’s as good a description of living with a PWD as I can come up with. Except, and it’s a big except, when it’s your loved one you can’t escape easily. He is now having trouble putting the different categories of rubbish in the correct recycling bin, a job which he likes to do and which I now have to check. A small thing compared with the difficulties of others but another small step.

Oh we have that thing with the bins too! Something you would expect to be so straightforward. Even the colour coded lids are ignored. So I have to let OH do the bins, because he’s always done them - and then race outside secretly and reorganise.

 

[Grahamstown]

Yes exactly: having to act in a completely selfless way, which is totally invisible to anyone.” To which I would only add, “And somehow stay calm”!

While we were in Sydney, which was hard enough on its own, OHs sister became dangerously ill in Melbourne. Our son is a doctor, so her daughters called on him for support. Gradually we worked out a chain of communication which spared the daughters: the older one would talk to, or text our son, and he would update me, and I would then explain, in a gentle (I trust!) and manageable way, to my OH. Naturally it was stressful but I was so glad to be able to contribute. Now we are home - me with a bad cold, inevitably! - OH has access to our landline phone, and keeps wanting to call the Melbourne family. I explained over and over about the system we’d set up - tried The List strategy - for which many thanks - then found that, as soon as I go for a walk, he is calling - not even the daughters, but his sister! Twice a day.

I got so irritated and worked up but now I am unwell have had to let this go. I keep trying to extend myself far enough to protect others, leaving myself uncared for. OH registered yesterday I was ill but today has completely forgotten - and in any case, his extremely unwell sister is preoccupying him exclusively, naturally enough.

I noticed this morning that another family member answered the sister’s phone, so maybe they have worked out a way of fielding his calls. I heard her asking OH to please call another number - but I doubt he’ll remember - and I don’t feel well enough to intervene any more at present.

So frustrating, all this, and so annoying! Silently I seethe!

When something happens which is terrible enough by itself, the difficulty is made worse by having a PWD to integrate into the events. I am so sorry for the pain that this must be causing. Keep strong with help from your TP friends, and take comfort xx

 

[carolynp]

When something happens which is terrible enough by itself, the difficulty is made worse by having a PWD to integrate into the events. I am so sorry for the pain that this must be causing. Keep strong with help from your TP friends, and take comfort xx

Thank you so much. What you say is comforting and true. Love C. xxx and hugs to you.

 

[Grahamstown]

Another day, another evening, and the same restless story, wants to go for a pint (having had a half with our son at lunch), persuaded otherwise by ‘keeping him safe’, goes for another walk. How long I can go on persuading him before he refuses to agree I really don’t know but I can only try for his sake more than mine. After one collapse and hospitalisation in February two months ago, another would be disastrous. Already our normal lives have been affected because I cannot leave him during this vulnerable period and our social lives have shrunk to nearly nothing. I marvel that I actually have to write that, which would have been inconceivable only six months ago. It has been a steep learning curve and I don’t think I could have got through without some sort of breakdown without TP support. I was at the end of my tether and feel more in control of a situation I never dreamed of such a short time ago. That collapse did the damage and led to the diagnosis of Alzheimer’s disease. So every time I have an episode of trouble I put it all down and feel better.

 

[canary]

Yes it is hard. I so understand about your social life and world shrinking.

You can only go one day at a time. Try not to look too far ahead as who knows what it will be like in a couple of months time. Eventually this obsession will go. Im glad you are feeling more in control.