Inside the mind of dementia

[Dutchman]

my wife has got to the stage where she now doesn’t recognise me as her husband. This happened a week ago. Im a very nice friend but she says to me ‘so where do you live’ and the loss of her feelings for me as her husband is breaking my heart. She expects him to turn up, looks out for him, checked the sheds for him and today searched around the streets. What must be going through her mind I can’t imagine. She is so confused. My thought is this...does she feel or experience the grief we would feel at the loss of a loved one? Is the short term memory loss stopping her from remembering her grief from yesterday. Even though I’m grieving myself it must be terribly sad in her mind that her loving husband isn’t around, why has he left me, when’s he coming back. And there nothing I or anyone can do about it. This thinking about it , because I still love my wife to bits, is making me very unhappy. The thought that she is longing for her husband (me) must be so cruel

 

[Grahamstown]

I feel for you in your distress @Dutchman such a terrible experience and I too wonder what causes this fracture of knowledge. I don’t know the answer but it must be something along the lines of your appearance not matching what is in her mind when she visualises her husband.

 

[Agzy]

How often Ive mused over this very question @Dutchman but have never been able to walk in her shoes as it were. It is almost as if she sees a different world occupied by strangers or dead relatives in that it is very real to her and heartbreaking to share. Feel for you.

 

[Dutchman]

How often Ive mused over this very question @Dutchman but have never been able to walk in her shoes as it were. It is almost as if she sees a different world occupied by strangers or dead relatives in that it is very real to her and heartbreaking to share. Feel for you.

The problem is that at times I can’t let it go and I try to convince her that I’m her as her husband. It doesn’t make any difference and I get frustrated and upset and angry sometimes. To be want your loved one back and it’s never going to happen must be agony for her. All I can do is to be there as company.

 

[karaokePete]

Hello @Dutchman, if this suddenly started a week ago I would have your wife checked for an infection(UTI, Chest etc) as a sudden deterioration can be caused by an infection but reversed by successful treatment.

Sometimes looking for a loved one (alive or dead) or a place can be an expression of an anxiety as it may not be the place or person that is being sought but the feeling of security and safety that was felt when with that person or in that place.

It would be an idea to talk to your wife at these moments to see if you can find out if she is anxious(maybe just ask why she wants her husband, is there something he needs to do for her, as you may be able to resolve that with reassurance or action. Otherwise a chat with the GP may help as depression and anxiety are common bedfellows of dementia.

My wife has twice asked me who I am and reassurance has worked - I once had to formally introduce myself by giving name, relationship and a formal handshake! These were isolated incidents, which were soon forgotten, and so I wasn't worried about the onset of an infection in my wife's case.

 

[TheBearsMummy]

Hello Dutchman, not quite the same but similar for us is that my husband's mum now thinks he is her dead brother. She has completely forgotten that he died years ago and that she was at his funeral.
It was heartbreaking the day my husband was yet again telling her he is her son not her brother when she told us that she had a son but he never visits her, not seen him for years.
I have helped him to accept that she loves him as the person he is but that as in her mind she is in her fifties (she's 90) she can't possibly have a son of the same age as herself so he must be her brother.
He looks nothing at all like her brother.
I'm just thankful she doesn't think he is his dad (also long deceased)

 

[Andrew_McP]

The problem is that at times I can’t let it go and I try to convince her that I’m her as her husband.

You will, slowly, learn to handle this differently, but it's very hard to fight a lifetime of natural 'explaining' instincts. I had the same issue with my mother and it took me a while to settle into my role as guide, not son. Sometimes if I offer to help her find her son she resents it and just gets cross. But often I can persuade her that I might be able to help, and that if we go out for a walk we ought to be able to find him.

We don't find him in any obvious way, clearly, but fresh air and exercise usually calm her now, and by the time we get back home she's content with whoever she thinks I am. Sometimes that's her son, sometimes it's her husband or her father. But whoever she thinks I am, what matters is that she's calm and safe. It's enough, heartbreaking though it can be, because we always want our old relationships back.

Earlier in Mum's decline even a long, theoretically tiring walk wouldn't solve anything though, so it's not always 'easy'. But sometimes if I got my sister to call that would help Mum focus on our voices rather than the stranger she was looking at in her house. Sometimes it would get so bad that I'd leave, taking a change of clothes into the garage, then come back a few minutes later to try and jog some kind of recognition. It worked a few times, but not always.

I think the key is the emotional side of things though... we have to find a way to wipe our frustrations and be relaxed, because if we're stressed, that's all our loved ones tend to see... the stress. But even as I write this I remember how hard that was for me even an hour ago during bathroom troubles, so advice is always easier to give than take!

Hopefully your wife's 'just' got a UTI and this will pass for you both soon. Best if luck, either way.

 

[LadyA]

As @Andrew_McP says, sometimes itsi possible to kind of "re-boot" things. Have you tried going out of the room for a short while, maybe putting on a coat, and, before coming bac in the room, talking to your wife about where you've "been", traffic on the way home, whatever - and keep talking as you come in to the room. Because often, a voice will be recognised and that recognition can help associate the voice with the person. May not work, but certainly worth a try.

I was fortunate. My husband forgot I was his wife, and didn't know my name, but to the day he died, he knew me as someone he loved very much. He remembered his first wife dying many years ago, but didn't remember re-marrying four years later.

 

[Agzy]

The problem is that at times I can’t let it go and I try to convince her that I’m her as her husband. It doesn’t make any difference and I get frustrated and upset and angry sometimes. To be want your loved one back and it’s never going to happen must be agony for her. All I can do is to be there as company.

I am sure we all have anger issues on quite a regular basis as we get confused emotionally as life is so far removed from normality.

 

[Dutchman]

Hello @Dutchman, if this suddenly started a week ago I would have your wife checked for an infection(UTI, Chest etc) as a sudden deterioration can be caused by an infection but reversed by successful treatment.

Sometimes looking for a loved one (alive or dead) or a place can be an expression of an anxiety as it may not be the place or person that is being sought but the feeling of security and safety that was felt when with that person or in that place.

It would be an idea to talk to your wife at these moments to see if you can find out if she is anxious(maybe just ask why she wants her husband, is there something he needs to do for her, as you may be able to resolve that with reassurance or action. Otherwise a chat with the GP may help as depression and anxiety are common bedfellows of dementia.

My wife has twice asked me who I am and reassurance has worked - I once had to formally introduce myself by giving name, relationship and a formal handshake! These were isolated incidents, which were soon forgotten, and so I wasn't worried about the onset of an infection in my wife's case.

Thanks karaokePete. The doctor gave antibiotics but still the same. He’s on the case and wants me to revisit in a weeks time to update the situation. He suggests that maybe the trip away at Easter May have altered her perception of me, just a thought to see if it may calm down and revert back. I doubt it now as nothing I do or say makes any difference. I feel that if I go on like this with so much upset then I don’t know if life is worth living. I’ve lost the only one I’ve really cared about and regret taking so much for granted. People keep saying that I should arrange to get out more but in some ways I want to be with her no matter what, as even the smallest shred of her company, even when she’s asleep on the sofa next to me gives me comfort. I want her around and I don’t want her not knowing me. Weird emotions but that’s me now.

 

[karaokePete]

Not weird emotions at all @Dutchman.

My wife and I are together virtually 24/7 - even my 'time out' for daily exercise is taken in our apartment. When we go out it has always been together. Just last week a neighbour even stopped me to enquire about what was up when I was seen walking alone as that was so strange.

Ancient Greek myth tells of humans being creatures with 4 arms, 4 legs, and a single head with 2 faces. These creatures were powerful enough to challenge the gods so they were split in two, male and female, to reduce their power and double the head count paying tribute. The result was a single soul in two bodies and true love is when the two halves of the soul each find their soulmate.

Dementia has meant that I too am finding my wife drifting away so I understand your emotion. We found our soulmates but are now feeling that we are, once again, being split apart.

 

[Dutchman]

To be honest I don’t know what to do for the best. Everyone says I should arrange for some time on my own and been advised by Care Direct that I get in touch with Agencies to get someone in. Yeah, right, hows that going to work? Wife gets up, puts her clothes straight on, a brief look at her teeth and her coat on ready to go where? How’s a strange agency worker suppose to achieve any washing? How will me going out while she’s sat with change the situation. I’ll just be coming back to the same old stuff. Change happens when the dementia’s gone or I’m gone. Either way I’ve given up hope on hope and started to harden myself from being upset by her dementia. If I stay sensitive I believe I’ll have a breakdown....what’s the point of that and she’ll need others to do the caring.

 

[karaokePete]

I'm sorry to read that you are losing hope @Dutchman.

I agree with you on the need to "harden". The first time my wife asked me if I was David(Pete is my real name) I realised that I was on an emotional roller coaster and that I would have to develop a thick skin. I'm living proof that it can be done.

As my username would suggest, I like karaoke and for years have spent regular nights out at karaoke with my wife. A few years ago, pre diagnosis, my wife's behaviour in bars showed lack of social norms and I was thinking of leaving her. Her diagnosis explained the behaviour and I, now, wouldn't dream of leaving her. When we go to a karaoke bar I show little interest in her behaviour, other than making sure she doesn't get herself into deep water. It can still rankle on the odd occasion but I can shrug it off.

On the carers front, please consider it. Sometimes a person with dementia will co-operate with an 'official', especially if they are in uniform. You may find that some of the angst involved in things like bathing will be eased for you. When the time comes for me I will be giving it a try.

 

[TheBearsMummy]

When we first introduced carers our pwd was resistant to them and sometimes was quite feisty in telling them they were to leave but we and they stuck to the story that they had been sent by the doctor to give her her tablets and they would get into trouble if she didn't let them give her the tablets with a cup of coffee. We told her that she had to see the doctor about it if she refused to let them in.
It helps that they do wear a smart tunic style uniform.
Now we refer to them as the nurses assistants or helpers never as carers as she doesn't need those does she. She accepted them coming in twice a day quite quickly and although she claims to know nothing about anyone coming to see her - never sees a visitor for weeks on end - she will tell them about it if they are late or arrive early. We have a camera with sound on the front door so we can keep an eye on comings and goings

 

[dancer12]

Not weird emotions at all @Dutchman.

My wife and I are together virtually 24/7 - even my 'time out' for daily exercise is taken in our apartment. When we go out it has always been together. Just last week a neighbour even stopped me to enquire about what was up when I was seen walking alone as that was so strange.

Ancient Greek myth tells of humans being creatures with 4 arms, 4 legs, and a single head with 2 faces. These creatures were powerful enough to challenge the gods so they were split in two, male and female, to reduce their power and double the head count paying tribute. The result was a single soul in two bodies and true love is when the two halves of the soul each find their soulmate.

Dementia has meant that I too am finding my wife drifting away so I understand your emotion. We found our soulmates but are now feeling that we are, once again, being split apart.

Hi karaokePete:

Such a profound comparison to Greek Gods & Mythology. If only we knew a quarter of what goes on in the minds of dementia patients. I believe it is the fear of abandonment that is causing much of it. Recently I took my husband to an emergency room as his back was bothering him for days and it was in the kidney area. He got so confused that he started wandering, eventually he wandered out of the hospital, boarded a city bus and ended up in a large mall. The police eventually found him, 6 hours later, wandering in the vicinity of the mall. He does not normally do this however we got separated, he could not see me so I guess he went looking for me. Now he needs a GPS on him at all times because of a moments lapse in judgement If only we knew what was going on in their minds, maybe we need to look in the past for answers.

 

[karaokePete]

Hi @dancer12, yes, I agree with your theory regarding fear of abandonment. My wife suffers with separation anxiety and this can produce the ‘shadowing’ behaviour that is often seen.

Many people refer to ‘wandering’ as an issue in people with dementia. I recall reading that people (both those with dementia and those who don’t have dementia) rarely ‘wander’. We all walk for a purpose and the trick with people with dementia is to try to discover that purpose, if possible. One big issue is that a person with dementia may have a purpose when they set out but then forget what they are seeking and just keep walking.

I would opine that your husband was trying to walk away from peril. When you couldn’t be seen panic and confusion likely set in and produced a flight response. Most people will walk away from danger.

This is one of the reasons I frequently suggest talking to medics about anxiety as meds can help.

I wish you and your husband all the best.

 

[NotTooLate]

It seems that many suffer this need to get away.. I know I cling to what I know, or think I know... and if it is not familiar, then the heart gets pumping! I can say what I want to say, but often the brain seems to mismatch with my mouth. Frustration on both sides can be a growing barrier that just seem to get bigger!

I have been given different medication to calm me down and supposedly help me, but more often than not, they just shut me down... I become unable to interact in anyway. I get he blank stares and the look trying to read me, when I can not read myself.

Things that are familiar to me are my anchor to reality.... strange places and people means something not nice is about to happen..

This is how I see the world now... days vary and some are much better than others... but this is me and may be different to you!

 

[dancer12]

It seems that many suffer this need to get away.. I know I cling to what I know, or think I know... and if it is not familiar, then the heart gets pumping! I can say what I want to say, but often the brain seems to mismatch with my mouth. Frustration on both sides can be a growing barrier that just seem to get bigger!

I have been given different medication to calm me down and supposedly help me, but more often than not, they just shut me down... I become unable to interact in anyway. I get he blank stares and the look trying to read me, when I can not read myself.

Things that are familiar to me are my anchor to reality.... strange places and people means something not nice is about to happen..

This is how I see the world now... days vary and some are much better than others... but this is me and may be different to you!

Hi Richard and Fin:

I understand that familiarity brings calmness and unfamiliarity brings distress, it does with most people and it must make people with dementia doubly fearful, that is why I like to use the same caregivers all the time, but this is not always possible and I don't know how to fix it except just hope & pray for the best and that is a huge drain on me. I went shopping yesterday and I was on pins & needles all the time I was out.

 

[Dutchman]

To be honest I don’t know what to do for the best. Everyone says I should arrange for some time on my own and been advised by Care Direct that I get in touch with Agencies to get someone in. Yeah, right, hows that going to work? Wife gets up, puts her clothes straight on, a brief look at her teeth and her coat on ready to go where? How’s a strange agency worker suppose to achieve any washing? How will me going out while she’s sat with change the situation. I’ll just be coming back to the same old stuff. Change happens when the dementia’s gone or I’m gone. Either way I’ve given up hope on hope and started to harden myself from being upset by her dementia. If I stay sensitive I believe I’ll have a breakdown....what’s the point of that and she’ll need others to do the caring.

Well, I lost it again today. Not only do I have the complications of dementia but also the fact she’s doesn’t recognise me as her husband. I tried to fool myself that I don’t care and therefore harden myself to the situation but I crave affection from my wife and it’s not going to happen, is it ? Sometimes it’s like talking to my cat for all the response I get...in fact I get more responses from the cat! I know I’m wasting my breath and shouldn’t get so angry but this situation is pushing me into places where reasoning has disappeared. She’s gone to bed (15.45) so another day on my own. I suppose it gets you used to being alone when the PWD isn’t around anymore. I want her here and I don’t want her here, that’s my true feeling, awful as it seems.

 

[kindred]

Well, I lost it again today. Not only do I have the complications of dementia but also the fact she’s doesn’t recognise me as her husband. I tried to fool myself that I don’t care and therefore harden myself to the situation but I crave affection from my wife and it’s not going to happen, is it ? Sometimes it’s like talking to my cat for all the response I get...in fact I get more responses from the cat! I know I’m wasting my breath and shouldn’t get so angry but this situation is pushing me into places where reasoning has disappeared. She’s gone to bed (15.45) so another day on my own. I suppose it gets you used to being alone when the PWD isn’t around anymore. I want her here and I don’t want her here, that’s my true feeling, awful as it seems.

I know, I crave affection from my OH, I know. I have had to be satisfied (not the right word) with a small smile, a conspiratorial look, things like that. I understand too about places where reasoning has disappeared. And how lonely it is. I once begged my OH to be nice to me for a few minutes but things were well past that - although it completely changed now he is in a nursing home. Just want to say I know, Dutchman. Us carers can lead appallingly abnormal lives. Once I threw my bathroom window open and shouted out