• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Dementia’s journey

Dutchman

Registered User
May 26, 2017
613
Devon
Well, I'm a man and I've never been afraid to unload when necessary. It isn't always clear if posters are male or female, some may not want to say, others may use a different gender/persona to preserve their privacy. There appear to be many more females than males on DTP and there must be all sorts of reasons for that. But there is also a solid core of male contributors who sometimes seek solace for their own issues or (just as importantly) try to help others by giving advice based on their own experience.
Point well made Northumbrian. I hope I never upset anyone with my post it’s just that sometimes I just feel (having spoken to some other men in same situation) that us as a gender can sometimes keep out thoughts guarded and everyone is so compassionate on the forum that it’s worth searching for that one kind comment that can make the difference to your day.
 

Pete1

Registered User
Jul 16, 2019
717
Hi @Dutchman, when I was in the eye of the storm, I found it very difficult to talk to anyone - I took it all on my shoulders. I certainly couldn't speak to my friends about it as it was an topic alien to them, perhaps once but after that who wants to hear it who doesn't understand it. I also (rather foolishly) didn't engage with the forum - I couldn't - as I said before it was like seeing the plot to a story where I knew the end. Of course now with hindsight that was a massive mistake - but I absolutely know where you are coming from.
 

Dutchman

Registered User
May 26, 2017
613
Devon
I’m confused. I went to the home this evening to do the usual changing of clothes, personal care so she’s ready for bed

As soon as I walked in she saw me, opened her arms and smiled. This is new. Other things are new such as leaning over to me to kiss me, saying what have you done today, which for her is relatively articulate. Smiling more when I repeatedly tell her l love her.

Just when I’m used to vacant looks and distant stares she shows affection and it increases my sense of abandonment and a fear that she may fret when I’m not there.

Dementia messes with your mind and emotions
 

Lellyhelly

Registered User
Jul 27, 2019
28
I can understand the back to bed. In the early days of my husband going into care I felt my bedroom was my refuge. Nobody but me entered that room and I felt safe. I could be sad, I could be happy and I could be reflective, I could be me with my feelings not troubling anyone else. So I was early to bed most nights and times throughout the day when I just got in. . It’s now nearly eight years on and three and a half since my husband died.

My bedroom is my sanctuary, My bed a large welcoming place to be so I read in bed, I come on the forum, I message friends and family, I knit. I’m in my very own space that no one else invades and it comforts me still.
We need to have a place to go with our thoughts, our feelings and our sadness and what better place than bed.

It will get easier but it takes time, do we ever get there? I know I haven’t but I deal with it better as time goes by. Not every day is a sad day. DTP is also a nice place to come to as well.
Ker
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,136
Kent
Just when I’m used to vacant looks and distant stares she shows affection and it increases my sense of abandonment and a fear that she may fret when I’m not there.
I found this happened with my husband when he had a small decline and lost some insight into his dementia. This meant his fear, anxiety and paranoia gradually disappeared and our times together became more compatible and loving than they had been for years.

It sounds to me as if your wife is getting the care she needs and has settled well in her care home. I hope this gives you some consolation that you have made the best decision for her @Dutchman and perhaps even though she is not at home with you, you will be able to spend some quality time together.
 

kindred

Registered User
Apr 8, 2018
2,412
I’m confused. I went to the home this evening to do the usual changing of clothes, personal care so she’s ready for bed

As soon as I walked in she saw me, opened her arms and smiled. This is new. Other things are new such as leaning over to me to kiss me, saying what have you done today, which for her is relatively articulate. Smiling more when I repeatedly tell her l love her.

Just when I’m used to vacant looks and distant stares she shows affection and it increases my sense of abandonment and a fear that she may fret when I’m not there.

Dementia messes with your mind and emotions
Yes it does, it certainly does. I think we have to be pretty mentally strong to get through our ordeal with dementia. To me this signifies that she is feeling calmer and settled and this is such a kindness that she is there and safe and can feel this. I do understand, Peter, please try not to reproach yourself. I constantly wanted to bring Keith home with me but it would not have been possible, I have to accept this.
warmest, Geraldine
 

Wifenotcarer

Registered User
Mar 11, 2018
285
Central Scotland
Yes it does, it certainly does. To me this signifies that she is feeling calmer and settled and this is such a kindness that she is there and safe and can feel this.
warmest, Geraldine
I so agree with Geraldine. It is coming up 4 months since OH went into a care home. Over the past month it is amazing how he has 'improved'. He has been so kind to me since I broke my arm, saying he is sorry that he cannot help or look after me, understanding that it is a good job that he is being kept safe, well fed and looked after. by others. He gives me the gentlest of cuddles and makes me laugh with his humour. He was pretending that we were in a cafe one day, ordering the 'waitress' (one of the Carers) to fetch me a chair, biscuits and a coffee. She played along with the charade, writing our order on her note book and even producing a tablecover. Up until last month I would not have believed that we would ever have such nice, fun times together. OH has become so relaxed and calm, and can be persuaded to join in activities (particularly the ones intended for the ladies!) He has made a few friends. Still nods off mid sentence, has no idea what time or day it is or anyone's name, but the essence of his personality is still there.
 

jenniferjean

Registered User
Apr 2, 2016
741
Basingstoke, Hampshire
Up until last month I would not have believed that we would ever have such nice, fun times together. OH has become so relaxed and calm, and can be persuaded to join in activities (particularly the ones intended for the ladies!) He has made a few friends. Still nods off mid sentence, has no idea what time or day it is or anyone's name, but the essence of his personality is still there.
This is something to remember for when the time comes when I can no longer cope with my husband at home. I hate the thought of him having to go into a home but if and when it gets to the stage when I can no longer cope, I'll have to remember your words.
 

Dutchman

Registered User
May 26, 2017
613
Devon
We’ve talked a lot about this merry go round of emotions associated with dementia.

I more or less believe most of the time that by only go to see my wife every other day, and then only for an hour after getting changed for bed, that I’m being lazy and selfish.
Perhaps I should stay longer, go every day, increase the visits, but I find it emotionally too much . But is that weak and lame , should I be stronger ?

when I don’t go I worry about her, how she is, is she unhappy, within her dementia muddled mind does she miss me? So I can’t escape any unhappy feelings, maybe for a short while I can.

I’m always told I should look after myself as well but even that seems an act of selfishness sometimes.

suppose I’m wrong and I am selfish??

bless you all , Peter (Dutchman)
 

kindred

Registered User
Apr 8, 2018
2,412
We’ve talked a lot about this merry go round of emotions associated with dementia.

I more or less believe most of the time that by only go to see my wife every other day, and then only for an hour after getting changed for bed, that I’m being lazy and selfish.
Perhaps I should stay longer, go every day, increase the visits, but I find it emotionally too much . But is that weak and lame , should I be stronger ?

when I don’t go I worry about her, how she is, is she unhappy, within her dementia muddled mind does she miss me? So I can’t escape any unhappy feelings, maybe for a short while I can.

I’m always told I should look after myself as well but even that seems an act of selfishness sometimes.

suppose I’m wrong and I am selfish??

bless you all , Peter (Dutchman)
I think that dementia puts us somehow in the wrong all the time, Peter. I used to feel that I could never do the right thing/enough/at the right time/with the right grace and love. We can never feel easy in our minds. I found this pervaded most of my general decision making not to do with dementia, I felt if I made the decision it would be the wrong one.#
I think you have said something so important here, you said you can escape the unhappy feelings for a short while. This is fundamental, a small but vital point of light.
You are doing well, and kindly and loyally. Many of the families I see at my late husband's home visit once a week if that. You are a good man.
warmest, Geraldine
 

Dutchman

Registered User
May 26, 2017
613
Devon
It’s one of those mornings where I just feel numb. I got up had some breakfast and as it’s rainy went straight back to bed. Still here.(11.00)

the day offers nothing to do and it’s so so difficult to get motivated. Is this what it’s like to be depressed? I’m taking all the right tablets and I’m not getting much get up and go.
I’m ashamed to say that I sometimes dread going in to see my wife due to her deteriorating condition. I’ll go today but I’m reluctant.
it frightens me sometimes how low all this makes me. 3 month’s she’s been there now and my loved one is drifting away. Days like this are horrible.
It’s interesting that when she was here at home we did nothing but watch tv. I had no worries about that. There was no real communication or company but I really didn’t mind that much.
 
Last edited:

Dutchman

Registered User
May 26, 2017
613
Devon
I had to write this down to calm me down. The smallest thing this morning set me off and I’m sobbing my heart out.

I was making the beds ready for the family this weekend and Bridget always liked the sheets just so and so it started because her voice was telling me get them straight please. And then that leads on to seeing silly little objects that she bought but which contain a moment in time memory.

I thought I’d got over the worse of this but I can’t come to terms with the way she looks now, that vacant dementia look. So many ordinary plans we had and now that life is finished. Will grief ever stop?
 

kindred

Registered User
Apr 8, 2018
2,412
I had to write this down to calm me down. The smallest thing this morning set me off and I’m sobbing my heart out.

I was making the beds ready for the family this weekend and Bridget always liked the sheets just so and so it started because her voice was telling me get them straight please. And then that leads on to seeing silly little objects that she bought but which contain a moment in time memory.

I thought I’d got over the worse of this but I can’t come to terms with the way she looks now, that vacant dementia look. So many ordinary plans we had and now that life is finished. Will grief ever stop?
I am so sorry about the way you feel, Peter, much fellow feeling. We had ordinary plans too. All just centring round being together. You ask if grief will ever stop. I have to keep telling myself that grief is normal, grief is normal. I force myself onwards despite the grief because if I can do that at least I can say that I have had a useful day, even if my heart was never in it. I don't really expect my own grief to stop any time soon. All my sympathy. Geraldine
 

northumbrian_k

Registered User
Mar 2, 2017
1,009
Newcastle
It can hit you any time @Dutchman. On Sunday I had nearly 40 minutes of mainly mixed-up, nonsense conversation, touches, kisses and laughter with my wife. There were a few glimpses of her former acerbic self. She was concerned about another lady M (‘he’ never wakes up), G (she’s got a bad cough), and the fact that most residents were not in the lounge. She seemed almost happy. I left her tucking into Sunday tea, feeling in a mellow but reflective mood. But later, as I was telling the dog how much I rely on his company, I was nearly overwhelmed with sadness. Still, next week will bring our wedding anniversary and a pantomime at her home - I mean a real pantomime of Oliver, not the daily pantomime caused by dementia! From your posts you seem to be coping well and getting stronger every day. It is normal that the most ordinary things can fill one with emotion: there is nothing wrong in letting it out through tears.
 

Dutchman

Registered User
May 26, 2017
613
Devon
Here’s another feeling that’s that’s given me pause for thought. I went out tonight with a friend and when I got back it struck me when entering the empty house that this is always going to be our house. We made it our home together .

she no longer lives here and it seems I’ve stolen it from her and placed her in one small bedroom in the home all without her permission. All done underhandedly. Just something else to add to
my general emotions of feeling guilt.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,378
Nottinghamshire
You haven’t stolen the house from your wife @Dutchman she left it, not because she wanted to but because dementia stole her links to her past. It’s hard to bear I know. I felt the same when my dad had to leave his home...but to him it wasn’t his home and I didn’t have the power to take him home anymore than you do to take your wife to the place she considers “home”
 

Topsy Tiger

Registered User
Nov 12, 2019
26
she no longer lives here and it seems I’ve stolen it from her and placed her in one small bedroom in the home all without her permission. All done underhandedly. Just something else to add to my general emotions of feeling guilt.
This, THIS is exactly it. Added to which, her condition worsened appreciably within 72 hours of her being there. It was like we had pushed her off a cliff. Your wife, my mother - different relationships but equal in love. She was no trouble, just anxious and bored and embarrassed by it all. I fear the guilt and regret will last for the rest of my life.
 

marshal

Registered User
Sep 6, 2017
67
Here’s another feeling that’s that’s given me pause for thought. I went out tonight with a friend and when I got back it struck me when entering the empty house that this is always going to be our house. We made it our home together .

she no longer lives here and it seems I’ve stolen it from her and placed her in one small bedroom in the home all without her permission. All done underhandedly. Just something else to add to
my general emotions of feeling guilt.
This is just how I feel all the time .He should be here, sat in his chair ,lying in my bed eating my meals .Will this sadness ever go away?
 

Dutchman

Registered User
May 26, 2017
613
Devon
This is just how I feel all the time .He should be here, sat in his chair ,lying in my bed eating my meals .Will this sadness ever go away?
I started the day as usual feeling that the house should be filled with someone else’s voice. She’s in the home and I’m here. No matter how many times people assure me that it’s the best place for her I remain feeling wretched that I placed her there, that she had no say in the matter, that I went behind her back with all the arrangements.

I had no one at the time to advise me differently, on that dreadful day she was taken away. Just when you feel a little respect from it all these thoughts surface once again. I’m afraid I’ll never be free of them