Pulling everything together

[Grahamstown]

OH wouldn't cruise when he was 100% physically and mentally capable. Ha! Keep on having some fun!

My OH wouldn’t have gone on a cruise either when he was physically and mentally capable! Neither would I having read The Corrections by Jonathan Franzen, enough to put anyone off cruising. Now I have just organised it and taken him and he is enjoying it. Tonight I took him to a musical talk and he enjoyed it. He is being stimulated even though he is not sure which place he is in. I am just taking him on easy organised excursions with no excuses and apart from the alcohol problem it is good.

 

[Hopeful123]

My OH wouldn’t have gone on a cruise either when he was physically and mentally capable! Neither would I having read The Corrections by Jonathan Franzen, enough to put anyone off cruising. Now I have just organised it and taken him and he is enjoying it. Tonight I took him to a musical talk and he enjoyed it. He is being stimulated even though he is not sure which place he is in. I am just taking him on easy organised excursions with no excuses and apart from the alcohol problem it is good.

It sounds as if your cruise is going quite well Grahamstown, really glad for you. We are at the stage where I just take my husband places, no point in asking him, he doesn’t know what he wants and forgets within minutes where we’re going. As long as we’re doing something he’s usually happy. If we have a day at home for me to catch up on trying to keep the garden or house under control, then he just sits watching before falling asleep. I feel that keeping him active is helping to slow down this disease, now in our eighth year. Enjoy the rest of your holiday, it’s lovely to be able to meet & chat to new people isn’t it?

 

[Pipeth]

Hi all, Grahamstown how great that you have people who understand on your cruise, I just hope that you are finding the old cliche that 'a change is as good as a rest' to be true. You are inspiring me at the moment. We really need a holiday/break! As it is with Yorkie, I get excited when we make it to the garden centre at the moment. This thread is now relevant to me, great title Grahamstown, thats how I am feeling now, need to pull it all together. At last we have a diagnosis, or should I say half a diagnosis. Memory clinic diagnosed Vascular Dementia on Thursday; mixed up emotions since then as I am sure everyone on here knows. They also sending us to neurologist as other finding on MRI need further investigation out of their remit. Next stop GP to sort out medication previously prescribed for various other problems, which now could have been dementia all along, also heart problem not been taken into consideration, still haven't had results of echocardiogram. So a little further along, it seems we are in middle stages rather than early. Thats my update, good to write it here as my own head is in a whirl. OH is in a happy state at the moment, just saying he doesn't understand and doesn't need doctors. He is made me laugh though when he asked me on getting home from consultation what was wrong with him, was it Diarrhoea, if only it was. Best wishes all.

 

[carolynp]

O

Hi all, Grahamstown how great that you have people who understand on your cruise, I just hope that you are finding the old cliche that 'a change is as good as a rest' to be true. You are inspiring me at the moment. We really need a holiday/break! As it is with Yorkie, I get excited when we make it to the garden centre at the moment. This thread is now relevant to me, great title Grahamstown, thats how I am feeling now, need to pull it all together. At last we have a diagnosis, or should I say half a diagnosis. Memory clinic diagnosed Vascular Dementia on Thursday; mixed up emotions since then as I am sure everyone on here knows. They also sending us to neurologist as other finding on MRI need further investigation out of their remit. Next stop GP to sort out medication previously prescribed for various other problems, which now could have been dementia all along, also heart problem not been taken into consideration, still haven't had results of echocardiogram. So a little further along, it seems we are in middle stages rather than early. Thats my update, good to write it here as my own head is in a whirl. OH is in a happy state at the moment, just saying he doesn't understand and doesn't need doctors. He is made me laugh though when he asked me on getting home from consultation what was wrong with him, was it Diarrhoea, if only it was. Best wishes all.

Oh @Pipeth at least you have the diagnosis, and of course your feelings are going to be terribly mixed right now. But knowledge IS better, and even knowing it’s middle stages rather than early (which happened recently with my OH also) does actually help, despite the sadness and the renewed sense of inevitability and doom. (Otherwise one could keep on hoping against hope; and, even now, I find myself waiting for my normal OH to come back. Recently @amethyst said re her OHs shaving that, even now, after all this time and all she’s been through, she found herself expecting him to remember how to do it again in a week or so.)

I did laugh about the garden centre! My big excitement at present is going with OH to the Growers Market first thing on a Saturday morning! Then the new butcher and the fishmonger afterwards! Three thrills in a row!

And that is very good about the diarrhoea! Two laughs from one post is pretty good going, so thank you for those, in the midst of your sorrow and frustration. Thinking of you.

 

[Mudgee Joy]

Hi

My OH wouldn’t have gone on a cruise either when he was physically and mentally capable! Neither would I having read The Corrections by Jonathan Franzen, enough to put anyone off cruising. Now I have just organised it and taken him and he is enjoying it. Tonight I took him to a musical talk and he enjoyed it. He is being stimulated even though he is not sure which place he is in. I am just taking him on easy organised excursions with no excuses and apart from the alcohol problem it is good.

@Grahamstown . I would consider a cruise now - though I wouldn’t have before -but I think the close quarters and lots of staff about would great help - lovely to know it’s working for you !! MJx

 

[Mudgee Joy]

Hi

My OH wouldn’t have gone on a cruise either when he was physically and mentally capable! Neither would I having read The Corrections by Jonathan Franzen, enough to put anyone off cruising. Now I have just organised it and taken him and he is enjoying it. Tonight I took him to a musical talk and he enjoyed it. He is being stimulated even though he is not sure which place he is in. I am just taking him on easy organised excursions with no excuses and apart from the alcohol problem it is good.

@Grahamstown . I would consider a cruise now - though I wouldn’t have before -but I think the close quarters and lots of staff about would great help - lovely to know it’s working for you !! MJx

 

[Grahamstown]

Hello everyone I thought I would post to give you the lowdown warts and all. He managed the shore excursion yesterday 3 hours, pretty well. Today was the first walking tour and I have to admit I was a bit apprehensive, particularly because it is an afternoon tour when he is at his most tired even though he spent most of the morning on his bed watching ‘the wedding’. The tour was 2+ hours and after an hour he wanted to go back to the ship by himself! Of course he couldn’t do that although he was convinced that he could, apart from anything else he can’t remember his stateroom number or how to get there. So I told the tour guide and took him back. I got really cross when he started running to reach the green crossing lights having been limping around not using his stick correctly and other irritating things that he can’t take care of. I put him in his bed and came to the observation deck for a calming coffee. He will have forgotten about it by the time I go back and we can pick up and carry on. So the moral of the story is be prepared to shoulder all the burden all the time being vigilant and quick . He can be very speedy when he wants. Tomorrow is another short?? walking tour but in the morning which may be better. It is quite extraordinary the way he asks where the hotel is and are we getting a bus to the next place. I am quite shocked by the accelerated decline.

 

[Grahamstown]

Oh and I forgot, something else, when I showed him that schedule for the walk tomorrow he said very confidently that that should be fine, he’ll be able to do it easily!

 

[Pipeth]

O


Oh @Pipeth at least you have the diagnosis, and of course your feelings are going to be terribly mixed right now. But knowledge IS better, and even knowing it’s middle stages rather than early (which happened recently with my OH also) does actually help, despite the sadness and the renewed sense of inevitability and doom. (Otherwise one could keep on hoping against hope; and, even now, I find myself waiting for my normal OH to come back. Recently @amethyst said re her OHs shaving that, even now, after all this time and all she’s been through, she found herself expecting him to remember how to do it again in a week or so.)

I did laugh about the garden centre! My big excitement at present is going with OH to the Growers Market first thing on a Saturday morning! Then the new butcher and the fishmonger afterwards! Three thrills in a row!

And that is very good about the diarrhoea! Two laughs from one post is pretty good going, so thank you for those, in the midst of your sorrow and frustration. Thinking of you.

Thank you Carolyn, it has been a relief to finally be able to tell family and friends OH's diagnosis. You are right about knowledge being better, the knowledge gained from TP friends has been a blessing, enabling me to stay one step ahead of this horrible situation. We will move forward being fore warned and fore armed.

 

[Grahamstown]

Today’s walking tour went better after a four pronged attack on his problems. First of all it was in the morning so he was reasonably fresh even though he had a lie down after breakfast with much sighing. One, kept him off the alcohol last night, it was a major effort with much complaining on and on; two, made sure his knee guard was in the right place, not round his calf; three, got him to use his walking stick properly not carry it around in midair, and four, gave him two paracetamol an hour before we left. He made it the two hours and a bit and the only thing he wouldn’t do was take off his sweater in very warm sun. He just won’t even though he is boiling and gets overheated. In the meantime I make sure we have everything on us, tickets, hats, sunglasses, audio systems and water, if anything is missing it is because I have forgotten it. I enjoyed it too and I have had a word with the excursions director who was extremely helpful. I made the excursion reservations a while ago and he was quite a bit better then, and I made sure I had a get out route in case he wants to quit again. I shall have to give up the longest excursion which I did want to do so much, but reality strikes. I blow hot and cold about taking him away again. On the one hand I think I can cope,and on the other it is a huge burden of constant care for him. I thought I would post my experiences in case it helps anyone else considering taking their PWD on a cruise.

 

[kindred]

Today’s walking tour went better after a four pronged attack on his problems. First of all it was in the morning so he was reasonably fresh even though he had a lie down after breakfast with much sighing. One, kept him off the alcohol last night, it was a major effort with much complaining on and on; two, made sure his knee guard was in the right place, not round his calf; three, got him to use his walking stick properly not carry it around in midair, and four, gave him two paracetamol an hour before we left. He made it the two hours and a bit and the only thing he wouldn’t do was take off his sweater in very warm sun. He just won’t even though he is boiling and gets overheated. In the meantime I make sure we have everything on us, tickets, hats, sunglasses, audio systems and water, if anything is missing it is because I have forgotten it. I enjoyed it too and I have had a word with the excursions director who was extremely helpful. I made the excursion reservations a while ago and he was quite a bit better then, and I made sure I had a get out route in case he wants to quit again. I shall have to give up the longest excursion which I did want to do so much, but reality strikes. I blow hot and cold about taking him away again. On the one hand I think I can cope,and on the other it is a huge burden of constant care for him. I thought I would post my experiences in case it helps anyone else considering taking their PWD on a cruise.

Not able to take OH on cruise or anything but just wanted to say how much I am admiring your wonderful vigilance and spirit. It's so lovely to read your detailed posts. Thank you so much. Took me right out of myself!

 

[Grahamstown]

@kindred thank you so much for your encouraging words which have cheered me up after a trying evening of constant repetition of where we are going, what we are doing tomorrow at what time, and then repeat! Plus his complete inability to say no to yet another glass of wine, which makes him worse. The only consolation is that it would be just the same if I was at home instead of enjoying this lovely ship, food and entertainment which he is enjoying too. So he does have much more stimulation than at home; sadly he won’t remember much but I have taken a lot of photos which he loves and do give a memory prompt.

 

[Pipeth]

@kindred thank you so much for your encouraging words which have cheered me up after a trying evening of constant repetition of where we are going, what we are doing tomorrow at what time, and then repeat! Plus his complete inability to say no to yet another glass of wine, which makes him worse. The only consolation is that it would be just the same if I was at home instead of enjoying this lovely ship, food and entertainment which he is enjoying too. So he does have much more stimulation than at home; sadly he won’t remember much but I have taken a lot of photos which he loves and do give a memory prompt.

Grahamstown you are encouraging me to try booking a holiday, last time I tried my husbands anxiety was so bad I cancelled. We seem to have entered a different phase he is calmer and passive lately. Your comment it would be just the same at home instead of enjoying what the cruise offers and the photos for memories is spurring me on. Thank you for sharing and hope the rest of the holiday goes well, you deserve it to.X

 

[carolynp]

@Grahamstown thank you for sharing your holiday with us. I loved your 4 pronged attack on the excursion and I'm here on dry land cheering you both on at sea. Rose

Oh yes! @rose555 thanks so much for reminding me, I loved "four-pronged attack" also! Really relished it. Long may we all stay as sane as @Grahamstown!

 

[carolynp]

Hope this gets through the ether and makes it on to TP! These large black cockatoos are the Hell's Angels of our parrot world. Ratbags, wild, so noisy. I wish I could send the raucous shrieks that accompanied this picture. And I wish I could get definition like @Ann Mac does but at least this will give you some idea. There are four black shapes all tearing off nuts like mad. And the brilliant blue sky is so typical of our autumns here, not a cloud from horizon to horizon for 360 degrees all round.

 

[Grahamstown]

Sad event today. We sat in the sunshine having a coffee in a charming town during half an hour break on the tour, and chatted to a couple near by. Back on the bus ( and my goodness how fast he can move when that time comes) I said how lovely it was sitting having coffee, and he said rather uncertainty ‘oh - yes, was I with you?’. Otherwise he has settled down and feels that the ship is vaguely home although when I told him we were going off to another place, he said oh dear we haven’t packed yet! On the face of it everything is going pretty well, but I feel a bit like a swan, sailing serenely above but paddling furiously below. I feel blessed by being able to go on holiday at all, and also by the support I get even on holiday from the TP community, which brings tears to my eyes. It just goes to show that you can go anywhere and do anything but you have always got the PWD with you and those problems don’t go away.

 

[carolynp]

Sad event today. We sat in the sunshine having a coffee in a charming town during half an hour break on the tour, and chatted to a couple near by. Back on the bus ( and my goodness how fast he can move when that time comes) I said how lovely it was sitting having coffee, and he said rather uncertainty ‘oh - yes, was I with you?’. Otherwise he has settled down and feels that the ship is vaguely home although when I told him we were going off to another place, he said oh dear we haven’t packed yet! On the face of it everything is going pretty well, but I feel a bit like a swan, sailing serenely above but paddling furiously below. I feel blessed by being able to go on holiday at all, and also by the support I get even on holiday from the TP community, which brings tears to my eyes. It just goes to show that you can go anywhere and do anything but you have always got the PWD with you and those problems don’t go away.

Hello @Grahamstown and I am holding you in my heart. Please consider yourself hugged. Awful, awful, to have had that moment. It was you who spoke of ours as a looking glass world, not long ago, a metaphor I’ve repeated a number of times to others, because it is so very apt. And now the serene swan: I was like that when our son was here last week, even though I became sharply and unpleasantly aware at times that it was a facade and that the stress of maintaining it was taking its toll.

Remember that our OHs abilities do fluctuate, mine gets affected by too much sun, and also by tiredness or ... cue scary music! ... unfamiliar surroundings. It is frightening at worst, and deeply disconcerting at the very least, when their fragile grasp on what we would call reality, slips for an instant, and one becomes abruptly aware of the gulf of confusion they are for the most part still at least partially concealing.

An old friend of my son’s said that with highly intelligent people like your OH the apparent competence can be maintained far, far longer, making it almost impossible even for specialists to discern the underlying truth of the situation. My take on this is that, in the case of your OH and mine, their ability to compensate means that, when the fissures can’t be concealed any longer, they are deeper and sharper, and the decline seems more precipitous, than it may inwardly have been in fact, for ages.

Not sure if I’m making sense, I won’t keep on because I want you to get this straight away. I am so sorry you had such a very difficult moment. I’m thinking of you. Lots of love, Carolyn.

 

[Grahamstown]

Hello @Grahamstown and I am holding you in my heart. Please consider yourself hugged. Awful, awful, to have had that moment. It was you who spoke of ours as a looking glass world, not long ago, a metaphor I’ve repeated a number of times to others, because it is so very apt. And now the serene swan: I was like that when our son was here last week, even though I became sharply and unpleasantly aware at times that it was a facade and that the stress of maintaining it was taking its toll.

Remember that our OHs abilities do fluctuate, mine gets affected by too much sun, and also by tiredness or ... cue scary music! ... unfamiliar surroundings. It is frightening at worst, and deeply disconcerting at the very least, when their fragile grasp on what we would call reality, slips for an instant, and one becomes abruptly aware of the gulf of confusion they are for the most part still at least partially concealing.

An old friend of my son’s said that with highly intelligent people like your OH the apparent competence can be maintained far, far longer, making it almost impossible even for specialists to discern the underlying truth of the situation. My take on this is that, in the case of your OH and mine, their ability to compensate means that, when the fissures can’t be concealed any longer, they are deeper and sharper, and the decline seems more precipitous, than it may inwardly have been in fact, for ages.

Not sure if I’m making sense, I won’t keep on because I want you to get this straight away. I am so sorry you had such a very difficult moment. I’m thinking of you. Lots of love, Carolyn.

How very consoling I found your message, thank you dear @carolynp . What you say is absolutely true about the decline and ability, his grasp on reality is poor and so obvious now when we are in an unfamiliar place. He is saying the most bizarre things, which sound as if they might be rational but which are totally opposite to the reality. On the other hand he is enjoying lots of aspects so must be thankful. I show him the photos every evening and he loves them and talks as if he remembers and sometimes he can relate something we have done.

 

[Mudgee Joy]

I got to read all of that above at once and it was great - thanks @Grahamstown and I just love those noisy black parrots Carolymp !! So we are all different - but somethings are the same!!
Today My OH spoke of me as if I wasn’t there - I don’t think he means anything unkind - but it’s always sad and an indication of what could come!
Love to you all MJ

 

[Mudgee Joy]

I could do with a constant reminder that there are others like me - struggling but supporting each other on TP.
I would like a sweater - or how about an apron - with a slogan on it - “TP for me!”
I’ll give it a bit more thought .