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Limiting my communication with my friends.

Looseleaf

New member
Mar 22, 2020
9
My husband always causes problems e. g. wandering off or getting cross with me for no reason when I have talked on the phone to friends. It was the same when I tried to join in Zoom groups which I have now abandoned. It is very limiting and means I never can enjoy phonecalls.
 

Cat27

Volunteer Moderator
Feb 27, 2015
11,453
Merseyside
Welcome to DTP @Looseleaf Sadly, that quite common. They seem to lose the empathy & understanding that we need to talk to others.
Please keep posting as you’ll get lots of support here.
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,296
69
Dundee
My husband was the same @Looseleaf. He got very jealous when I spent time on the phone to friends. It’s hard, I know.

Welcome to the forum - I know you will find lots of help and support here.
 

fromnz123

Registered User
Aug 2, 2019
25
UK
My husband always causes problems e. g. wandering off or getting cross with me for no reason when I have talked on the phone to friends. It was the same when I tried to join in Zoom groups which I have now abandoned. It is very limiting and means I never can enjoy phonecalls.
Wow Looseleaf I can’t imagine how hard that must be as meeting up, and talking to friends is the one thing that helps me keep going. I do get the inquisition these days about who I was talking to and about what.
I do tend to take the opportunity to speak to friends while he’s asleep so that I don’t have to go and hide in the spare room or the other end of the garden.
Take care.
 

canary

Registered User
Feb 25, 2014
12,856
South coast
Unfortunately as dementia progresses their world narrows and narrows and they lose the ability to see anything from anyone elses viewpoint, so all they can see are their own needs wants and desires - everything has to revolve around them. I find I get most done when OH is asleep!
 

Vic10

Registered User
Feb 18, 2017
133
Yes, I always have that feeling of doom whenever the phone rings!
I make many a call whilst walking the dog! The only half hour I have to myself.
I find messaging good to keep in touch with friends, volume always turned off.
 

Guzelle

Registered User
Aug 27, 2016
421
Sheffield
Yes it’s very common, but it isolated us even more! I was chatting to a friend once in Sainsbury’s cafe and when I had finished he was livid and called her a fat bitch! He got very aggressive with me when we got home and I managed to ring the mental health team and they came out and increased his antipsychotic drugs.! It did work he calmed down and made a cup of tea as though nothing had happened!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,499
Kent
I think it`s feeling left out which makes our people with dementia seem so selfish. They do not have friends calling for long conversations so I suppose may think we enjoy our friends more than being with them.

There is also the paranoia which used to make my husband feel I was talking about him. This happened when he was at the stage when he couldn`t follow conversations.

This adds to the feeling of loneliness often expressed by my husband even though, apart from general household duties I never left his side once he wasn`t safe to be left. .
 

Looseleaf

New member
Mar 22, 2020
9
Thanks for your responses. It is reassuring to hear others have (or had) the same experience. Only a couple of weeks before Lockdown I had to give up all my activities as he couldn't be left and then suddenly everybody was in the same position regard activities! People are now getting a few bits of life back but not for me - even getting to go to the hairdresser is not possible to leave him. He is becoming so reliant on me being there as well which I am afraid will mean unable to leave him with family and friends. At 71 he is relatively young to be in this position and still physically active.
 

Veritas

Registered User
Jun 15, 2020
14
Thanks for your responses. It is reassuring to hear others have (or had) the same experience. Only a couple of weeks before Lockdown I had to give up all my activities as he couldn't be left and then suddenly everybody was in the same position regard activities! People are now getting a few bits of life back but not for me - even getting to go to the hairdresser is not possible to leave him. He is becoming so reliant on me being there as well which I am afraid will mean unable to leave him with family and friends. At 71 he is relatively young to be in this position and still physically active.
Please don't let yourself become the only person he will trust. You need the time out, and will need it even more as time goes on. So start getting him used to other people being around when you aren't, for your own sake as much as his.
 

Littlebear

Registered User
Jan 6, 2017
95
I have exactly the same problem with my OH. I didn’t realise it was common. He also doesn’t like me texting or reading. Any communication with anyone other than him sends him into a rage. My husband is unable to speak coherently & doesn’t like me talking to him so it means zero conversation for me. Fortunately he usually goes to bed early so lots of late night phone calls & Facetime. During the day he just wants me sitting with him watching endless TV.
 

White Rose

Registered User
Nov 4, 2018
671
I think it`s feeling left out which makes our people with dementia seem so selfish. They do not have friends calling for long conversations so I suppose may think we enjoy our friends more than being with them.

There is also the paranoia which used to make my husband feel I was talking about him. This happened when he was at the stage when he couldn`t follow conversations.

This adds to the feeling of loneliness often expressed by my husband even though, apart from general household duties I never left his side once he wasn`t safe to be left. .
Put like that @Grannie G you can understand it, of course they feel left out and it's so sad that they have no one to talk to on the phone - even my partners children phone less and less now. I try to include him a bit in my zoom conversations so he's not totally left out.
 

Mydarlingdaughter

Registered User
Oct 25, 2019
125
North East England UK
My husband always causes problems e. g. wandering off or getting cross with me for no reason when I have talked on the phone to friends. It was the same when I tried to join in Zoom groups which I have now abandoned. It is very limiting and means I never can enjoy phonecalls.
Its very important to keep up your friendships. Would you be able to let them all lknow the situation and try to find some other means of staying in touch? Either talking on the phone while hes is alsleep or texting or emails?
I am wondering if anyone else is supporting you such as GP or community psychiatric nurse?
 

Looseleaf

New member
Mar 22, 2020
9
Its very important to keep up your friendships. Would you be able to let them all lknow the situation and try to find some other means of staying in touch? Either talking on the phone while hes is alsleep or texting or emails?
I am wondering if anyone else is supporting you such as GP or community psychiatric nurse?
Its very important to keep up your friendships. Would you be able to let them all lknow the situation and try to find some other means of staying in touch? Either talking on the phone while hes is alsleep or texting or emails?
I am wondering if anyone else is supporting you such as GP or community psychiatric nurse?
Its very important to keep up your friendships. Would you be able to let them all lknow the situation and try to find some other means of staying in touch? Either talking on the phone while hes is alsleep or texting or emails?
I am wondering if anyone else is supporting you such as GP or community psychiatric nurse?
He sleeps very little during the day - if he does as soon as I creep out he soon follows. At the start of lockdown I used time when he was occupied in the garden or with a jigsaw to phone friends but those times are getting shorter as his concentration is not so good. I do use emails and texts - carefully as those can cause irritation. Also if family or joint friends ensure the phone is passed to him. We are not receiving any help. The GP did prescribe anti - depressants just before lockdown which I am very grateful for as sleep has improved.
 

Hazara8

Registered User
Apr 6, 2015
486
My husband always causes problems e. g. wandering off or getting cross with me for no reason when I have talked on the phone to friends. It was the same when I tried to join in Zoom groups which I have now abandoned. It is very limiting and means I never can enjoy phonecalls.
Dementia changes the brain. That is a huge anomaly in something so terribly complex. Thus paranoid behaviour, even when mild, stems from the same source and is an underlying fact and not intentional - albeit the presentation can often appear to be intentioned and mischievous . Distraction might afford some opportunity to communicate with friends. Again, this is just one more facet in the whole dementia journey and one which can be very significant in terms of the right one has to engage with others as is normal and yet one needs to adopt various ways and means to achieve so without that sense of deceit - which it is most certainly not.
 

kindred

Registered User
Apr 8, 2018
2,457
Dementia changes the brain. That is a huge anomaly in something so terribly complex. Thus paranoid behaviour, even when mild, stems from the same source and is an underlying fact and not intentional - albeit the presentation can often appear to be intentioned and mischievous . Distraction might afford some opportunity to communicate with friends. Again, this is just one more facet in the whole dementia journey and one which can be very significant in terms of the right one has to engage with others as is normal and yet one needs to adopt various ways and means to achieve so without that sense of deceit - which it is most certainly not.
Hazara that is so very interesting. I agree, of course dementia is massive brain damage. What interests me is the whole question of the rights of the carer. we are human beings, we have needs too, but the idea of rights seems to go out of the window. I used to feel sub human, a beggar with no rights at all.
My goodness, we need more help, more concern, more professionals reaching out. This is dreadful to manage alone. Thank you. Kindred.
 

Vitesse

Registered User
Oct 26, 2016
210
I’ve mentioned previously that my husband is very much the same regarding the phone. But in his case, it’s often a fixation that I am talking to some man on the phone. It doesn’t happen every time, but quite often and he gets very cross and shouts for me to get off the phone. The same has happened with zoom, but at least he can normally see who is on zoom! He is deaf, so it’s no good trying to put him on the phone with anyone. It’s a real problem and it drives me round the bend!!
 

Hazara8

Registered User
Apr 6, 2015
486
Hazara that is so very interesting. I agree, of course dementia is massive brain damage. What interests me is the whole question of the rights of the carer. we are human beings, we have needs too, but the idea of rights seems to go out of the window. I used to feel sub human, a beggar with no rights at all.
My goodness, we need more help, more concern, more professionals reaching out. This is dreadful to manage alone. Thank you. Kindred.
You are absolutely correct. Until society recognises dementia above and beyond "management " or as simply an 'old age' phenomenon, things will not change. Cancers, heart disease, strokes et al are mostly perceived in the light of understanding and subsequent cure and care by default. Caring in the world of dementia goes unsung generally owing to the misconceptions. The stuff of bemused quips and quaint commentary, the reality is completely and utterly different as you will know. And yes, Carers have precisely the same rights as any other human being whoever they are or wherever they might be.

Like a mother with her newly born child, the act of caring and protection is a deeply meaningful act, ancient in its nature and in its need for survival. You don't need to open a book to be aware of that instinctive humanity. With dementia the one living with the disease is that newly born child - vulnerable and innocent - and one cares and protects without reservation. But you have only so much energy, so much time, so much ability at your disposal. Thus one needs respite and support. That is profoundly true and absolutely essential. Support one will find here and from varied and often extraordinary people who have cared and are caring over and above recognised and accepted levels of Care. As to respite? You cite that predicament very clearly. Meantime one carries on because one has to. Because we are human. Therein lies the 'problem'. Reminding the world of that salient truth?

Warmest wishes.
 

Looseleaf

New member
Mar 22, 2020
9
You are absolutely correct. Until society recognises dementia above and beyond "management " or as simply an 'old age' phenomenon, things will not change. Cancers, heart disease, strokes et al are mostly perceived in the light of understanding and subsequent cure and care by default. Caring in the world of dementia goes unsung generally owing to the misconceptions. The stuff of bemused quips and quaint commentary, the reality is completely and utterly different as you will know. And yes, Carers have precisely the same rights as any other human being whoever they are or wherever they might be.

Like a mother with her newly born child, the act of caring and protection is a deeply meaningful act, ancient in its nature and in its need for survival. You don't need to open a book to be aware of that instinctive humanity. With dementia the one living with the disease is that newly born child - vulnerable and innocent - and one cares and protects without reservation. But you have only so much energy, so much time, so much ability at your disposal. Thus one needs respite and support. That is profoundly true and absolutely essential. Support one will find here and from varied and often extraordinary people who have cared and are caring over and above recognised and accepted levels of Care. As to respite? You cite that predicament very clearly. Meantime one carries on because one has to. Because we are human. Therein lies the 'problem'. Reminding the world of that salient truth?

Warmest wishes.
I am sure that how the rest of the world sees my husband is in a very different light to how he is with me in or out of the home environment. He has always been very strong socially, in fact in our early days together helped me to become more confident socially. His skills in this area with others will show a different person now albeit he might struggle for words, repeat things or look to me to explain what e is trying to say. I am sure that is the case for every carer. I even remember him saying about a couple of friends locally who had alzheimer's after talking to them that he couldn't believe they had dementia. Now I can understand what their partners were going through! Somehow this behind the scenes view needs to be brought to a wider audience.
 

Hazara8

Registered User
Apr 6, 2015
486
I am sure that how the rest of the world sees my husband is in a very different light to how he is with me in or out of the home environment. He has always been very strong socially, in fact in our early days together helped me to become more confident socially. His skills in this area with others will show a different person now albeit he might struggle for words, repeat things or look to me to explain what e is trying to say. I am sure that is the case for every carer. I even remember him saying about a couple of friends locally who had alzheimer's after talking to them that he couldn't believe they had dementia. Now I can understand what their partners were going through! Somehow this behind the scenes view needs to be brought to a wider audience.
Dementia is often subtle in presentation and absent in "social " settings, I.e. with friends and neighbours during brief interaction. Also when family visit, say for the day, the "reality " of the condition can be totally misleading and promote raised eyebrows or open scepticism if actual truths are recounted I.e. tantrums or aggression etc. Such is the disposition of the Carer in this whole dementia story.

I have often quoted something which a highly experienced professional in dementia care would tell her new recruits: " imagine you arrive at work as usual to begin your day, as you have done for years. But on arrival you are challenged as to who you are. You are bemused, but slightly taken aback. Then you are asked what are you doing there? ' l work here of course, as you well know?' Sorry, but we have never seen you here before and would be grateful if you leave".

That can illustrate the " reality " of dementia in a way which can be appreciated. The sense of complete bewilderment coupled to a growing anxiety based upon a conviction..... which is false.

We cannot step into the shoes worn by dementia patient because we maintain capacity. But we can offer Care and Comfort and our humanity as best we can. That alone is wholly worthwhile.