The loneliness question

[Grahamstown]

I have just returned from our holiday cruise and have read the thread about the Q&A loneliness topic last week which I was notified about. I couldn’t join in that but do have some thoughts to share. To be lonely is a very individual experience and I had an example during our holiday. Sensible conversation has more or less gone, and one day at lunch a gentleman whom we had already met came to sit at the group table. A very interesting conversation began and I was overwhelmed by a feeling of great sadness and loneliness in the midst of the group because my dear husband could no longer even begin to understand the ebb and flow of the discussion and I realised that I was ‘alone’ when with him now. He couldn’t remember meeting this man either. The constant repetition, reassurance and careful watching that he requires now is full time except when he is resting or asleep. I don’t feel ‘lonely’ but I am alone coping with his increasing dementia because nobody else can at the moment. It was a wonderful cruise, perfect weather, calm waters and a beautiful ship with plenty to do. It cruelly exposed my husband’s limitations, his inappropriate comments, inability to judge correct social behaviour and the complete collapse of his short term memory. Fortunately I took a lot of photos and he loves looking at them over and over again and it does remind him of the trip. We celebrated his 80th birthday and he has completely forgotten about it and even how old he is at times. I felt that I was ‘on duty’ all the time with an afternoon break when he went to bed. Was it worth it? At times I thought never again but at other times I thought yes I can do this. He absolutely loves the cruising, watching the sea, ate very well and I got him to be far more active than usual, by just telling him he was doing it. My final thought was that I was glad to get him safely home without any mishaps, but had a close call on one shore excursion when he simply couldn’t physically go on. The worst thing is trying to cover for him even while explaining that he has memory problems. Dementia is still the unspoken disease out there in the wider world even though everyone is aware of it.

 

[maryjoan]

I have just returned from our holiday cruise and have read the thread about the Q&A loneliness topic last week which I was notified about. I couldn’t join in that but do have some thoughts to share. To be lonely is a very individual experience and I had an example during our holiday. Sensible conversation has more or less gone, and one day at lunch a gentleman whom we had already met came to sit at the group table. A very interesting conversation began and I was overwhelmed by a feeling of great sadness and loneliness in the midst of the group because my dear husband could no longer even begin to understand the ebb and flow of the discussion and I realised that I was ‘alone’ when with him now. He couldn’t remember meeting this man either. The constant repetition, reassurance and careful watching that he requires now is full time except when he is resting or asleep. I don’t feel ‘lonely’ but I am alone coping with his increasing dementia because nobody else can at the moment. It was a wonderful cruise, perfect weather, calm waters and a beautiful ship with plenty to do. It cruelly exposed my husband’s limitations, his inappropriate comments, inability to judge correct social behaviour and the complete collapse of his short term memory. Fortunately I took a lot of photos and he loves looking at them over and over again and it does remind him of the trip. We celebrated his 80th birthday and he has completely forgotten about it and even how old he is at times. I felt that I was ‘on duty’ all the time with an afternoon break when he went to bed. Was it worth it? At times I thought never again but at other times I thought yes I can do this. He absolutely loves the cruising, watching the sea, ate very well and I got him to be far more active than usual, by just telling him he was doing it. My final thought was that I was glad to get him safely home without any mishaps, but had a close call on one shore excursion when he simply couldn’t physically go on. The worst thing is trying to cover for him even while explaining that he has memory problems. Dementia is still the unspoken disease out there in the wider world even though everyone is aware of it.

I understand exactly what you mean - it looks as though you oversaw the cruise so that both of you were able to enjoy it as much as you possibly could given the dementia.

You and I, and many of the TP people, are in the same situation of 'covering' for someone who is at this stage with dementia. I am uncertain about what are called 'dementia friendly' situations - towns, shops, entertainment areas etc, because I do not think any of them actually have a really angle of what dementia is. I must admit, however, that on occasions I do make the 'aside' to strangers when OH is behaving oddly " I think you should know, he has dementia" and I find people to be very understanding.

The feeling of great sadness in conversation - how I empathise with that....... alone but not alone

 

[AliceA]

I am happy that you were able to enjoy your trip to a large extent. Our last holiday was a bit like that I was fully occupied with the care aspects. Things I thought I had covered just uncovered!
Just before we went I had had a fall too, I turned to warn of rough ground ahead and went head long. I ended up in A&E. we went ahead but it was a strain.
It also brought home the fact had fallen on holiday, he just would not have coped.
Difficult choice really.

 

[Izzy]

Your post brought back so many memories for me @Grahamstown. It's hard. Thinking of you.

 

[nae sporran]

We sadly stopped going away together,even for the day, two years ago. OH just can't handle the physical exertion and apart from one singer in a cliff top café never remembers where we were and what we did. I'm pleased you managed to find some enjoyment and can look at the photos, Grahamstown. It is a lonely existence some times when your partner is no longer a partner so much of the time.

 

[Grahamstown]

This morning he asked me when we were going home, as he lay in bed, too tired to get up. As soon as I said that we are home he looked around and said oh yes there are my favourite paintings. These are of his childhood home landscape. Tears fell as I carried on doing the chores. I know I am not alone in this though.

 

[Mudgee Joy]

Hi Grahamstown- I hope the holiday was a good break. I was often asked when we were going home - but the last few weeks have been quiet on that front!
Last night I made a nice dinner of fish and veggies and my husband who was enjoying it said “I really appreciate all you do for me - I really do “ (wow) - this morning he made me a cup of tea (first in many months) but .. he made another cup for “the other woman” - ? I think I am two people now .

 

[Grahamstown]

Good to hear from you @Mudgee Joy as life carries on. We have settled down again after a wonderful cruise, with beautiful weather, calm seas, great food and lovely ship, where I had the occasional meltdown about the alcohol and was vigilant as usual. I did manage to restrict him to two glasses per evening plus non-alcoholic drinks. He did start to remember the way from where we were sitting to the nearest toilet but at first I had to accompany him and used the disabled toilet so that I could go in with him to stop him wandering off and I could go too. It worked a treat, and then he settled down. On the ship all was fine and he loved it but shore excursions made him anxious because he didn’t really know where we were and was worried about missing the boat. On one excursion he wouldn’t go on and I thought he was going to collapse but the staff were wonderful and got us straight onto the shuttle back to the ship where he spent the rest of the day in bed until dinner. He is keen to go again so I shall see because it’s down to me now. He is always telling me how much he loves me which I find very emotional. I looked at the stages of Alzheimer’s link which @karaokePete has posted and my husband is very characteristic of stages 4 and 5. We seem to have a lot in common. I called a great friend yesterday whose husband has Vascular dementia and she is having a terrible time so I felt glad to be able to talk to her. She is in a small isolated village with little support and he is being very unpleasant, unkind and controlling. Sadly I don’t think she would be capable of joining TP. I shall keep calling in the meantime because I get the feeling that she can’t say some of the things that she said to anyone else. Take care xx

 

[Mudgee Joy]

Yes thank heavens for TP. We do learn a lot about coping despite the differences between our dependants! And help is often all around. I took my husband for a medical check up on Monday. The doctor found a very suspect sun cancer on his back. He called in the cancer specialist of the practice who was there in 2 minutes - the upshot is that he is having a small operation tomorrow to get rid of it! No point in a biopsy he said - has to come off. They fit him in where there is no space and at the same time arranged blood tests for me because I felt a bit giddy ! My OH has been anxious today but I make light of it and so he settles.
Almost Everyone is helpful given the chance !!
BTW I heard a good explanation on the radio of the 'wanting to go home' situation. As the real home becomes less recognisable, the person suffering dementia wants to return to that comfortable familiar place they once knew as home. Ii is so sad to not be able to recognise and rest at home. . Welcome home Grahamstown! Where did your cruise take you ?
Love MJx

 

[karaokePete]

Hi folks, as my name was mentioned by @Grahamstown yesterday I popped in and have to say that I identify so much with this thread.

I have found that I can't even engage in small talk with my wife as she can't follow a conversation so I feel very much alone most of the time. As luck would have it, I've always been a bit of a loner so I don't mind a bit of isolation. The hard bit is that I don't get to enjoy the isolation as we all have to look out for another at every turn in case they wander off or create a crisis.

The memory/lack of cognitive function is a strange thing at times. We are now in Cyprus on an extended holiday and one of the things I do before we leave Ireland is put the car in the garage and disconnect the battery etc. On our last day at home we were driving towards our apartment and my wife asked me if I had put the car away yet! I knew she had become quite unaware of her surroundings but that took me by surprise.

Unfortunately, all the recent stress I've had has felled me with a cold so I'm now sitting in sunny Cyprus feeling penned in, doing all the laundry, coffee making etc., while my wife sits in the sun - just as well that I asked her if she had sunscreen on, as she hadn't and would have been a nice lobster colour by this evening if I hadn't intervened. Oh well, I should be OK for karaoke at the week-end.

I notice the mention of our PWD saying how much they appreciate what we are doing, or saying how much they love you. My wife does this too, when she isn't telling me she hates me and threatening to leave me!! I think we get the blame when things are confusing them and the love when they have moments of clarity.

On the asking for home, or parents, thing; that is often an expression of an anxiety. The security of the parental home or parental supervision may be sought when anxiety rises due to increased confusion. Whilst it can be a general thing that reassurance can help, it can also relate to something specific that they just cant verbalise. Careful questioning like what do you want from home or why do you want your mum/dad, what would they do may reveal something simple you can resolve for them.

My wife suffers with depression and anxiety and an increase in the relevant meds helped with these things so don't rule out these common bedfellows of dementia.​

 

[Sad Staffs]

@karaokePete .... how I envy you. Cyprus.... we have had many spring and autumn month long holidays in Cyprus. We always loved the place, especially driving up in the Troodos mountains and Akamas peninsular.
@Grahamstown .... how I envy you. Cruising. We have had many many of those. We too loved them. So many far away places...
I’m so pleased that both of you have managed good holidays away with your partners.
It isn’t a very nice trait of mine to be envious, but we can’t manage anything more than 3 hours duration, mostly due to his incontinence. His dementia, most of the time at the moment I could deal with.
I’m just so pleased for you both that you have or are having good holidays. I loved reading about them, they brightened my day, so thank you.
Love B xx

 

[karaokePete]

Hi @Sad Staffs, I'm glad you enjoyed mention of Cyprus.

I love it here, even down to the karaoke as I sing in 3 languages so have a wider repertoire than back home. We stay in the Amathus area of Limassol with the ruins of the ancient city of Amathus within easy walking distance. As soon as my cold lifts I'll be walking the hills that overlook the ruins and seeking out the history under my feet - shards of pottery etc just litter the ground.

If you want a bit of imagination I can take you back a few years when I was seeking a close look at what looked like a rock cut tomb in the area. It was just at the time when my wife was beginning to display symptoms and her separation anxiety was beginning to intrude on my desire for solitude. Anyway, I looked at my watch and saw that I was going to be late home so decided to cut across some rough ground to get back to the road and in doing so came across an area with open tombs everywhere. Outside one of these tombs I found a remnant from what seemed like a large plate so I picked it up and turned it over. The underside wasn't sun bleached and still had the original paintwork quite visible. When I got home I did a bit of research and discovered that I had been in the ancient necropolis, which had been looted by the British Crusaders at the time of King Richard. I like to imagine that one of the looters picked up the plate and seeing it as something without value smashed it at his feet, with this shard sitting there during the passing of time until I came along and picked it up. When I find anything like that I photograph it and leave it where I found it - just enjoying the thoughts that I associate with it about it's history and my memory of the finding.

 

[Sad Staffs]

Hi @Sad Staffs, I'm glad you enjoyed mention of Cyprus.

I love it here, even down to the karaoke as I sing in 3 languages so have a wider repertoire than back home. We stay in the Amathus area of Limassol with the ruins of the ancient city of Amathus within easy walking distance. As soon as my cold lifts I'll be walking the hills that overlook the ruins and seeking out the history under my feet - shards of pottery etc just litter the ground.

If you want a bit of imagination I can take you back a few years when I was seeking a close look at what looked like a rock cut tomb in the area. It was just at the time when my wife was beginning to display symptoms and her separation anxiety was beginning to intrude on my desire for solitude. Anyway, I looked at my watch and saw that I was going to be late home so decided to cut across some rough ground to get back to the road and in doing so came across an area with open tombs everywhere. Outside one of these tombs I found a remnant from what seemed like a large plate so I picked it up and turned it over. The underside wasn't sun bleached and still had the original paintwork quite visible. When I got home I did a bit of research and discovered that I had been in the ancient necropolis, which had been looted by the British Crusaders at the time of King Richard. I like to imagine that one of the looters picked up the plate and seeing it as something without value smashed it at his feet, with this shard sitting there during the passing of time until I came along and picked it up. When I find anything like that I photograph it and leave it where I found it - just enjoying the thoughts that I associate with it about it's history and my memory of the finding.

We have many many happy memories.
I can visualise where you are.... I’m sitting drooling!
We always stayed in the Limassol area. We preferred it to Paphos whims was too touristy for us.
We always hired a 4 x 4 for the duration, and spent our holidays as much off the beaten track as possible.
So many fantastic ruins to explore, and many of them almost tourist free.
All our memories are flooding back.
Have a wonderful time.... I’m with you in my dreams!
Love B xx

 

[Grahamstown]

@Sad Staffs I have taken my chances now for holidays because I am not sure if I can do this holiday lark again, it is very stressful at times. We must build our memories while we can, to draw on when we can no longer have them. He has said he would like to so I shall wait and see. He has settled down again now, I have kept him off the wine and that helps, the dark evenings are helping because he is not so keen to go out which is when he goes walk about to the pu. I have had an unexpected breakthrough on the pub front anyway. The landlady caught me the other day and said she realised that my husband was not quite right, and that he came in for a pint from time to time. She asked me to leave my mobile phone number and the staff would call me if he turned up unexpectedly. I was very touched by this. We go together from time to time because it has the best pizzas baked by a Sicilian chef in a proper pizza oven, and the beers and wine are pretty good too, no wonder he likes going! He too has had some hospital visits @Mudgee Joy for prostate cancer which I think I may have mentioned. He doesn’t need treatment fortunately but the visits took their toll on him. We are going to Stratford this weekend which was booked a year ago, before dementia and I am apprehensive but will just bash on. We are going with friends so that may help. Our cruise took us around the Mediterranean stopping at 7 ports all lovely weather which makes all the difference. One more item of interest is the use of donepezil. My daughter heard a programme on the radio with French doctors taking part, who totally discount its use. They do not think it does any good and it’s not prescribed in France. I myself am not convinced it has done any good but nor does it seem to have done any harm. Using it does give me a bit of extra leverage to dissuade him from drinking alcohol. Greetings to you all xx

 

[Sad Staffs]

Hi @Grahamstown
Have you any idea how proud of you. The fact that you go on your cruise round the Med, off to Stratford... keep doing it while you can. I really am impressed. It made me smile about the landlady at the pub. I’m sure that some would frown on her words ‘not quite right’, but it was good that she tackled the subject and her concerns for you. Good on her.
We have done a number of cruises from Southampton, including a 14 night across the pond. Amazing icebergs. sailing through a Prince Christian Sund and Quaqatoq, both spelt wrong, but just totally amazing. Sailing into New York was exciting.
I hope you manage more holidays. As I’ve said I’m very impressed with you and how you cope. I would if I could, but my husbands incontinence limits so much for us now. That and his poor mobility. I think we could do more with his level of dementia if it wasn’t for those other issues. But in reality I don’t know as we don’t try.
I have no idea about meds for his Alzheimer’s as they won’t medicate because of the major issues with his kidneys and that he won’t excrete whatever he needs to.
It’s been lovely talking to you about cruising. Please keep going while/if you can. Take care, love N xx

 

[Sad Staffs]

@Grahamstown
That should have been.... love B xx

 

[Grahamstown]

I don’t think I could take my husband away either if he was incontinent @Sad Staffs but he isn’t yet although he drives me mad wanting to go every half an hour in the evenings, which was a problem on the cruise because I had to go with him. It was very tiring backwards and forwards through the restaurant until he learned the way and the staff helped, but he was not needing to during the day. I know he hasn’t got a urinary infection, but probably it’s the prostate, which is why we went to the doctor in the first place. Or maybe it’s sundowning. I think I said the wrong words which the landlady said, I think she said that she thought he was disorientated or words to that effect. This is the programme I mentioned above: http://www.bbc.co.uk/programmes/m0000qlz
It certainly gives you pause for thought, and at least you don’t have worry about these drugs. I’ll let you know how the weekend goes, which depends on how I manage. Take care & love xx

 

[Mudgee Joy]

Lovely to hear about the cruising the Mediterranean- and cypress - you are all rather fortunate in the UK as do many trips are possible - I think I would go to Malta if I could .
We have Asia - but medical attention is likely difficult ! (If needed) - still might think on Singapore! Love B

 

[PalSal]

@Grahamstown
I had my husband all checked out as he wants to go the toilet all the time. The doc told me there is nothing wrong with him at all. But the fact is that when people do not hold their bladders and train them to be full, the bladder kindof has less capacity . And with dementia, this doc said he had found that is just what happens as dementia patients cannot remember, so they just keep emptying their bladders which sets up the cycle from which there is no return. Or that was his opinion.

 

[Grahamstown]

@Grahamstown
I had my husband all checked out as he wants to go the toilet all the time. The doc told me there is nothing wrong with him at all. But the fact is that when people do not hold their bladders and train them to be full, the bladder kindof has less capacity . And with dementia, this doc said he had found that is just what happens as dementia patients cannot remember, so they just keep emptying their bladders which sets up the cycle from which there is no return. Or that was his opinion.

That is the conclusion I have come to as well, both before and after his check up. I sometimes go with him and get him to sit down to empty his bladder because I don’t think he does. Then he seems to be able to wait longer. I have to do that if we are out because it’s a nightmare because he can’t find the toilet and I find myself trekking backwards and forwards. I started using the disabled toilet so that I could go in with him. He is disabled after all even though it’s hidden in his head.