Dementia’s journey

[Dutchman]

I thought I was getting stronger, that the emotions were getting weaker, but then I’ve just been looking at past photos of her in the home and I’m off again crying for what she’s become. Why do I do this to myself? Stupid!

I try and keep it together and then I long for the good times when we were leading a normal life. I’m sitting alone in a quiet front room but in times before she’d be making a noise somewhere, organising cupboards, singing, asking me questions, correcting me or sitting quietly.

It’s not fair. Simply that. I sometimes think a broader understanding of all this would help but I’m emotionally upset by the smallest detail of anxiety in her face, the moments she tries to talk but can’t and the way she holds my hand tightly.

 

[SeaSwallow]

@Dutchman I cannot do anything to change how things are for you but just wanted to say that I really feel for you. This is such a horrible disease and to see our loved ones suffer tears at the heart.

 

[Dutchman]

@Dutchman I cannot do anything to change how things are for you but just wanted to say that I really feel for you. This is such a horrible disease and to see our loved ones suffer tears at the heart.

Thank you?

 

[Dutchman]

I know I seem as if I’m just keeping on and many have said I need to “ move
on” ( whatever that means) but I sit here in the quiet of the morning wishing there was someone who could make me feel special.

Bridget has all these carers running round after her, she remembers nothing of our past life of 30 odd years, she smiles a lot so I know she’s happy or at least reasonably content. It’s almost like she’s that way because she’s away from me and our home. Was I so bad?

I know I need to get on with it but other couples don’t have this heartache of separation all the time. I get tired of listening to their plans for their holidays, doing the house up, visiting friends and all the stuff we did before dementia.

How we go through life oblivious to what could happen to us and not making the most of the time we have now!

 

[canary]

It’s almost like she’s that way because she’s away from me and our home. Was I so bad?

Shes that way because now she is in a care home her needs are being met in a way that one single person (however loving, willing and self sacrificing) is unable to do.

OH is still at home, but there is no companionship and he is entirely unable to make me feel special now because all he can see are his own needs.

Once dementia arrives, everything changes.

 

[CAL Y]

@Dutchman . It’s now 9 months since my husband died. I understand when you say that you want someone to make you feel special.
At first that was one of my overriding thoughts. The thing Is there was only one man I wanted and that was no longer possible.

I don’t think that you will have any chance of changing your life as long as Bridget is still “ with you but not with you”. You have my sympathy.

 

[Andy54]

I know I seem as if I’m just keeping on and many have said I need to “ move
on” ( whatever that means)

In our circumstances I think that anyone who manages to "move on" in some way is very fortunate indeed, I certainly can't see any way of doing that, although it would be good to lose some of the sense of living in limbo.

 

[Mr.A]

"move on" is a rather empty phrase. Move on to where, to do what, with who? I spent 15 months 8/10 hours a day with my wife in a care home. I had to be content to see her receiving the care and attention she needed and deserved and which I couldn't provide. In all that time there were tiny glimmers of some recognition now and again but how I relished them. It was impossible to move on and really I suppose I didn't want to because of those rare moments. Sadly I have now lost her after 60 wonderful years together and life seems so empty but now is the time when I must move on.

 

[update2020]

I think just about everyone on here sympathises with you @Dutchman and feels the same. It is one reason we are on this site! So never feel alone and never feel you should not post. (I know, easier said than done). xxx

Happy couples can be extremely irritating /upsetting. I tend to avoid them ☺️

 

[SeaSwallow]

I think most of us understand @Dutchman. My hubby is still at home with me but we can no longer have the social life that we used to or go on holidays. Sometimes i feel jealous of those who can and then feel guilty as I was never that type of person.

 

[Dutchman]

Thank you @canary, @SeaSwallow, @update2020, @Mr.A, @Andy54 and @CAL Y.

It means a lot to know that we are all going through similar stuff ( wish we weren’t). All the time Bridget is still in this world she’s the firm point that my life revolves around.

I was with a couple this morning for a coffee and they have their problems. I see other couples and you never know whether or not they’re happy. I guess I miss the normality of a hum drum relationship where love was accepted and where we knew each other so well with a familiarity built up over 25 years before dementia took over.

Thanks once again
Peter

 

[Dutchman]

Why oh why! Again and again I wake up after having the same dream that upsets me terribly.

Bridget is back here at home, quite normal, in good health, talking to me normally, and I know that I have to tell her that we need to talk about taking her back to the care home because they’ll be worried about her and , anyway, we’re paying all this money and you’re not there and they won’t keep your room.

Can you imagine the confusion in all that?. I wake and realise with relief that all’s ok. But for a little while I have my Bridget back if only in dreams.

 

[update2020]

Why oh why! Again and again I wake up after having the same dream that upsets me terribly.

Bridget is back here at home, quite normal, in good health, talking to me normally, and I know that I have to tell her that we need to talk about taking her back to the care home because they’ll be worried about her and , anyway, we’re paying all this money and you’re not there and they won’t keep your room.

Can you imagine the confusion in all that?. I wake and realise with relief that all’s ok. But for a little while I have my Bridget back if only in dreams.

That’s awful so sorry.

My current dreams tend to be nightmares about the bad times - though not always. I think yours might be worse though in a way. I’m not sure.

mine can be so vivid that I remember them for months. I’d love to know if there is a solution. Hugs.

 

[GillP]

Why oh why! Again and again I wake up after having the same dream that upsets me terribly.

Bridget is back here at home, quite normal, in good health, talking to me normally, and I know that I have to tell her that we need to talk about taking her back to the care home because they’ll be worried about her and , anyway, we’re paying all this money and you’re not there and they won’t keep your room.

Can you imagine the confusion in all that?. I wake and realise with relief that all’s ok. But for a little while I have my Bridget back if only in dreams.

Oh Peter, I am so sorry to read about your dream. It must make you confused in that twilight time when we wake up feeling fully cognisant of our dreams and question their reality.

I’ve, thankfully, not had such dreams but do have fitful sleep. It’s ironic but when my husband was at home refusing to go to bed I was shattered and desperate to return to a normal bedtime. Now I’m on my own I avoid going at a reasonable time!

 

[Dutchman]

It’s the pits isn’t it.

Another Sunday and I wake up on my own and think about all the stuff other couples do when the weather’s fine and they relax.

C S Lewis said, after her lost his wife, that grief is a winding valley you walk and you can never know what sad memory is just around the bend.

From where I sit now I look through the french doors into the garden path and remember her being led away to the car that took her to the care home. She went so willingly because she thought she was going to live with her parents. That afternoon our life here died. It’s a few feet away and that’s were she walked with two carers. And after that she would never walk again on these carpets and down that path.
It’s three years and that memory, that bend in the valley, is as clear now as it was then.

 

[Grannie G]

It had to be @Dutchman and it's no one's fault. It's sad but it`s life.

Looking at others with seemingly beautiful lives, isn't truth. No one knows what is behind the closed doors of others.

 

[SeaSwallow]

It had to be @Dutchman and it's no one's fault. It's sad but it`s life.

Looking at others with seemingly beautiful lives, isn't truth. No one knows what is behind the closed doors of others.

That is so very true @Grannie G I know of someone who I thought had the perfect life, then it came out later that it was far from being so.
My hubby is still far from needing nursing care but if and when that becomes necessary I hope that for his sake I make the right decision to enable him to have the care that I could not provide. @Dutchman It is hard but you made the right decision.

 

[update2020]

Goodbye Peter. I’ve never called you that before for reasons …. I hope you fare well. Does anyone have a perfect life? Would our lives have been perfect without Alzheimer’s? Carpe diem. Adieu.

 

[Dutchman]

Goodbye Peter. I’ve never called you that before for reasons …. I hope you fare well. Does anyone have a perfect life? Would our lives have been perfect without Alzheimer’s? Carpe diem. Adieu.

Thank you for all you support. Goodbye and my best wishes go with you for your future life

 

[Dutchman]

I know this is going to sound weird but I’m unhappy that Bridget seems so content and smiles a lot when I’m there on a visit. In fact they say she’s like that most times.

Why should she be happy when she doesn’t live with me anymore? She’s so matter of fact about the whole thing. She glances towards me and smiles so she must be pleased to know I’m there. As I said it’s weird. I should become pleased but that smile I want to take home and for her to be happy here but I know I can’t.
Of course I want her to be happy but I’m jealous of the fact that it’s in her home and not back here.
God, all this is so confusing some times and I read multitudes into something probably simple.

The bottom line is , I suppose, that I’ll always want her back as my old Bridget who lovingly smiled just for me.