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The loneliness question

PalSal

Registered User
Dec 4, 2011
921
Pratteln Switzerland
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.
Of course, you are entitled to use the disabled bathroom!!!
 

Grahamstown

Registered User
Jan 12, 2018
1,727
80
East of England
We had our flu jabs today and filling out the forms confirmed my feeling that his memory is getting worse. He couldn’t remember our address which he could do easily not very long ago, he couldn’t remember his email address correctly and he didn’t know if he had ever had a jab before. I notice that he is setting his jaw with the lower jaw fixed in front of the upper. I don’t think this is a good sign.
 

Agzy

Registered User
Nov 16, 2016
1,635
Moreton, Wirral. UK.
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.
With you on this@Grahamtown as I am very used to being alone even when like you in company shared with OH whether in company or not but, as she has asked me to I have booked an Icelandic cruise next July and don’t know why it came into her mind. I know I will enjoy the sights etc but daren’t take into a sit down restaurant meal as this would really upset her and hoping for a quiet buffet style area somewhere. As you say alone but not necessarily lonely.
 

Mudgee Joy

Registered User
Dec 26, 2017
675
New South Wales Australia
I feel rather alone tonight - or just annoyed with the constant craziness . I suggested time for a shower and my husband says he doesn’t think so - how about a bath - no - etc - I’m thinking of sleeping on the couch - when I realise it’s the old sundowning again- so I suggest we take a look at the shower - sure enough he’s forgotten we have one . Just one simple, normal, non- crazy evening would be great ! o_O:mad:
 

Grahamstown

Registered User
Jan 12, 2018
1,727
80
East of England
You are never alone on TP even though it’s in the cloud! Life is a bit like that here. Driving to Stratford yesterday was a bit of a nightmare, where are we going, shouldn’t we turn off here, and sundry other confused remarks. This morning he woke up and said, are we at sea or in port? I suppose I should be glad that he can still visualise the cruise but I continue to be jolted by increasing dementia, there is no other word for it. Take care of yourself @Mudgee Joy as we battle along in our crazy world xx P.S. he never wants to shower but will if I tell him to.
 

Grahamstown

Registered User
Jan 12, 2018
1,727
80
East of England
Oh dear, he is really not doing at all well on this mini break. Can hardly remember a thing about where we are or going, as a result has mini panic attacks and wants to go to bed and lie down and I had to take him back to his room in the interval of the play. I was able to return and see the second half. Our friends have been wonderful and so supportive, and I notice that he is easier to deal with when they are there because he is in host mode, and managed to get him to do more than usual otherwise. So I don’t think I shall be able to do this excursion again after 30 odd years of coming with the same friends, so sad. He is really ill with this disease which is advancing so fast, after all it was only June when we came before and he was a lot better than he is now.
 

Sad Staffs

Registered User
Jun 26, 2018
677
Oh dear, he is really not doing at all well on this mini break. Can hardly remember a thing about where we are or going, as a result has mini panic attacks and wants to go to bed and lie down and I had to take him back to his room in the interval of the play. I was able to return and see the second half. Our friends have been wonderful and so supportive, and I notice that he is easier to deal with when they are there because he is in host mode, and managed to get him to do more than usual otherwise. So I don’t think I shall be able to do this excursion again after 30 odd years of coming with the same friends, so sad. He is really ill with this disease which is advancing so fast, after all it was only June when we came before and he was a lot better than he is now.
I’m so sorry your mini break isn’t working out as well as you had hoped. It must be hard realising how different your husband is now compared to your last visit in June, such a short time ago.
It’s all so hard to come to terms with and to cope with.
I find it hard here.
Often my husband seems like my husband, then he can’t remember the simplest of things, like taking his pants down when he goes to the loo, and he asks me what he has to do. It’s the simplest of things that shock me, and that make his dementia so obvious to me. But others don’t see that, so I understand what you say about host mode.
Do take care, I hope you can manage to enjoy the remaining time of your mini break.
B xx
 

Mudgee Joy

Registered User
Dec 26, 2017
675
New South Wales Australia
Hi @Grahamstown and @Sad Staffs - the downward trend is likely to plateau soon and you'll have a chance to recoup a bit.
Getting excited about something - or anxious - makes D much worse.
My husband has been invited on a trip to the zoo tomorrow -no matter how many times it told him it was tomorrow - he got started ready to go - I thought I had him finally convinced- even out it in writing ! And left him for a hour - came home and he is missing - went walking down the Main Street to make sure the bus to the zoo noticed him! Poor thing - now we do it for real tomorrow and he is saying he doesn't care to go!! ;)
 

Grahamstown

Registered User
Jan 12, 2018
1,727
80
East of England
Hello @Mudgee Joy and @Sad Staffs the roller coaster of dementia carries on. I think I know what you mean about a plateau because I was more than relieved to get him safely home where he sighed with pleasure as he knew where he was and he seemed happier immediately. Our friends saw him as he really is, because he can’t keep up host mode all the time and they realised what a strain it is. That’s only possible to know if you see the person more frequently than usual and on our theatre trips we are together a lot. I haven’t got anything else planned now and most of what we have done was planned when he was not even diagnosed. So it’s both a relief and a sadness that life as we knew it, is over. We may go on another cruise next year because that can be accommodated but in another six months who knows? It is a lonely life without your mate isn’t it, whatever stage they are at? It’s so good to have this forum to chat on because we all know the burdens that we are all carrying, much worse for some.
 

Grahamstown

Registered User
Jan 12, 2018
1,727
80
East of England
I am reading the newspaper while my husband is still sleeping. I have just seen a photograph of Hunter Davies, his wife Margaret Drabble and their two children taken in 1975. It is a happy photograph and is a mirror image of our family around that time. It overwhelmed me with sadness and I just cried. I can’t really understand why because that was then, and before he was diagnosed with Alzheimer’s, I would just have enjoyed it. Now it seems to symbolise before whereas now is after and I am virtually alone. It helps to write it all down and I think I can recover until the next time.
 

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