Dementia’s journey

[Dutchman]

Hi @blackmortimer and @jennifer1967 and others. Firstly, I’ve just come away from the home for a quick visit ( can’t visit tomorrow) with some flowers and she was brought to the door and said “wet”, it’s pouring down here.

As I also saw her yesterday, the one day after another almost gave a normality of seeing her as my wife of day to day living. When’s there’s a gap it separates and distances you from that person. Do you understand? Anyway, it’s hit me hard again and I’m in tears in a local pub car park.

I can imagine seeing her everyday and strengthening that bond but, I know, it’s physically and mentally impossible to achieve. So the impossible dilemma is that I want to continue a relationship as man and wife because I miss her but can’t have that dream because she’s gone into another world.

I’ve booked another inside visit for Friday morning.
These posts are my way of journaling my feelings for benefit later on. Thanks for listening.

peter

 

[notsogooddtr]

Peter, grief is natural. So (usually) is recovery. Don't beat yourself when you feel a little better,it isn't a betrayal. I think we are programmed to move on after loss, the human race would have died out otherwise.

 

[Dutchman]

So, I spent a whole day yesterday with a family group who wanted to reconnect with me after many years. It was a diversion from thinking of Bridget constantly but they wanted to know about her, what happened, the details of dementia and the care home and I found this both tiring and upsetting and , for them, awkward and embarrassing.

They go home tomorrow and I can grieve in peace and not put a “front” on for others benefit.

What was interesting is that the older cousin had lost her husband years ago and, in her opinion, people in my position should face the fact that “what is is” and not waste time ruminating over what can’t be changed.

Why is this so easy for others? Am I odd the way I am? Should I “ get over it” and move on? I sometimes feel my misery is my comfort, like a badly treated dog shivering and cowering in his crate covered by a worn blanket.
Dear me, I’m getting gloomy.
Peter

 

[kindred]

So, I spent a whole day yesterday with a family group who wanted to reconnect with me after many years. It was a diversion from thinking of Bridget constantly but they wanted to know about her, what happened, the details of dementia and the care home and I found this both tiring and upsetting and , for them, awkward and embarrassing.

They go home tomorrow and I can grieve in peace and not put a “front” on for others benefit.

What was interesting is that the older cousin had lost her husband years ago and, in her opinion, people in my position should face the fact that “what is is” and not waste time ruminating over what can’t be changed.

Why is this so easy for others? Am I odd the way I am? Should I “ get over it” and move on? I sometimes feel my misery is my comfort, like a badly treated dog shivering and cowering in his crate covered by a worn blanket.
Dear me, I’m getting gloomy.
Peter

No of course you are not odd in the way you are! We can’t just get on and move on when our loved ones have dementia. I don’t know how we would face it and get on. Rumination is normal, few people can easily stop doing this.
Peter, I now belong to an online group for the widowed. It is supportive like this one and we all tell it like it is. It’s such a relief to hear.
Has your cousin ever been in your position?!
All thoughts and fellow feeling. Kindred.x

 

[blackmortimer]

So, I spent a whole day yesterday with a family group who wanted to reconnect with me after many years. It was a diversion from thinking of Bridget constantly but they wanted to know about her, what happened, the details of dementia and the care home and I found this both tiring and upsetting and , for them, awkward and embarrassing.

They go home tomorrow and I can grieve in peace and not put a “front” on for others benefit.

What was interesting is that the older cousin had lost her husband years ago and, in her opinion, people in my position should face the fact that “what is is” and not waste time ruminating over what can’t be changed.

Why is this so easy for others? Am I odd the way I am? Should I “ get over it” and move on? I sometimes feel my misery is my comfort, like a badly treated dog shivering and cowering in his crate covered by a worn blanket.
Dear me, I’m getting gloomy.
Peter

You're not at all odd, Peter. For one thing, losing someone to death is different from losing someone to dementia - there's a finality in the one which is lacking in the other. The dementia patient is still "there" not only in our hearts but in reality so we can dream of the possibility of some miraculous cure or a wonder drug coming along so we can't let go and "get on with it" and I suspect all of those of us who have gone through or are going through the whole sad business can really understand. I've taken to avoiding conversations about Margaret with friends and neighbours for that reason. In one sense we have to try and accept that our loved one is now in a different world where we can't penetrate but they're still there and we can't erase them. All we can do is to try to come to terms with the reality we face and that's so much easier said than done.

My daughter came up today having called at the nursing home. She saw Margaret but was far from convinced that she was recognised or for that matter me or other family members who came up in attempted conversation. But she (Margaret) seems reasonably content and has made a new life for herself and has a friend who plies her with biscuits so I feel better. I have come to the conclusion that she probably won't ever recognise me again but I can live with that as long as she is settled where she is and seems reasonably happy in her world. I'm still sad and on the edge of tears for what once was a lot of the time, but this evening I do feel it's a little better.

God bless

 

[Dutchman]

Hi @blackmortimer @kindred. I suppose I want others to know and have empathy for my feelings but how can they when grief is an emotion that’s missing from many peoples lives.
I’ve tried to give myself some time away from visiting Bridget as it’s a one way street with communication. But I can’t help it, I need to go regularly otherwise I feel uncomfortable and mean even though I know she doesn’t recognise me as Peter. On the other hand, if she did know me and hold some feelings for me, then leaving after a visit could be very painful. Can’t win either way.

To know she is well looked after and as content as she could ever be means a great deal. In the end it’s our love ones happiness that’s important.

I’m pleased @blackmortimer that you’re feeling a little better

Peter

 

[blackmortimer]

Hi @blackmortimer @kindred. I suppose I want others to know and have empathy for my feelings but how can they when grief is an emotion that’s missing from many peoples lives.
I’ve tried to give myself some time away from visiting Bridget as it’s a one way street with communication. But I can’t help it, I need to go regularly otherwise I feel uncomfortable and mean even though I know she doesn’t recognise me as Peter. On the other hand, if she did know me and hold some feelings for me, then leaving after a visit could be very painful. Can’t win either way.

To know she is well looked after and as content as she could ever be means a great deal. In the end it’s our love ones happiness that’s important.

I’m pleased @blackmortimer that you’re feeling a little better

Peter

Don't apologise for going regularly, Peter. It's what you need and as I've quoted before, whatever gets you through the day (or night even). In a sense, put your own needs first and that's what you need, so it's fine. For myself, I'm going to stand back and remember all the myriad ways in which Margaret enchanted me before she was taken away from me by this dreadful disease. We all have to grieve in our own way.

God bless,

 

[Jaded'n'faded]

Yes, Peter, you do need to go. Unless you go you will sit at home and wonder how she is. But keep your visits short. Go there 'just to see', enough so you can come home and know she's OK.

It really is insensitive for people to suggest you should 'get over it'. She's not dead!!! Do they want you to pretend she is? How awful - I'm not surprised you're upset - I'd be angry. All I would say is that you are right that people not in this situation really cannot understand. It shouldn't be harder for you to visit family than it is to visit Bridget so if it is, don't go. You don't have to make life easier for them by pretending that everything is OK when it isn't. I think you're good at putting on a brave face (even if you say you're not!) but you don't have to do it. You know best what you are comfortable with so trust your own instincts.

 

[Dutchman]

Thanks for your very kind comments @blackmortimer @Jaded'n'faded. As always I wouldn’t get through the day without this support.

Just finished a visit

I’ve realised that the best way to handle the visits is to have an emotional routine. It’s so easy to be unhappy while I’m with her because I’m here, now, with the women I adore and miss. So I try to leave my misery at the door, and when we’re alone smile, sing along a little to a song on my phone, talk about our holidays, my cat and the weather


To avoid a meltdown of grief I have to look at her and say to myself “ you’re well looked after, you don’t fret after me and, as far as I can tell, you’re content “. I have to be firm with myself and believe these things.

And who does she think I am I wonder? The staff don’t kiss her forehead, her cheek, her hands. And they wouldn’t be whispering “I love you very much” in her ear. When I do these things she smiles and giggles and looks at me with incomprehension. Then she wants to sleep and I quickly put a pillow under her head and hold her hand. We go downstairs - end of visit.

God bless

 

[Pusskins]

Thanks for your very kind comments @blackmortimer @Jaded'n'faded. As always I wouldn’t get through the day without this support.

Just finished a visit

I’ve realised that the best way to handle the visits is to have an emotional routine. It’s so easy to be unhappy while I’m with her because I’m here, now, with the women I adore and miss. So I try to leave my misery at the door, and when we’re alone smile, sing along a little to a song on my phone, talk about our holidays, my cat and the weather


To avoid a meltdown of grief I have to look at her and say to myself “ you’re well looked after, you don’t fret after me and, as far as I can tell, you’re content “. I have to be firm with myself and believe these things.

And who does she think I am I wonder? The staff don’t kiss her forehead, her cheek, her hands. And they wouldn’t be whispering “I love you very much” in her ear. When I do these things she smiles and giggles and looks at me with incomprehension. Then she wants to sleep and I quickly put a pillow under her head and hold her hand. We go downstairs - end of visit.

God bless

@Dutchman It's funny how we're each affected differently. I've been so down this week, brooding over MH's infidelity etc, but realised this morning that I still love him regardless and I only feel reasonably together when I get to visit him. Away from him, I'm angry and bitter about his past behaviour. I'm finding it so hard to wait to sell our property so I can move to the town where he is. I admit I am lonely and miss having company, so I don't know how I will deal with this. One half of me wants a new relationship because I know there is no future for MH and myself. However, the other half of me is so emotionally dependent upon MH, I can't see me having the courage to put me first. So many regrets that I can't do anything to fix now.

 

[Dutchman]

Hi @Pusskins. Just seen your post and I’m going to take a little while to think about it. I know a little about infidelity because my first wife was unfaithful to me and we eventually divorced. Did me a favour- I met Bridget!

speak soon❤️

 

[Dutchman]

Hi @Pusskins. So here I am in the quiet of the house on a Saturday afternoon feeling lonely but glad I can speak to you.
I hope I understand the emotional connection you have for your husband even though he was unfaithful. He’s now the vulnerable one and there seems to be a need for you to protect him and love him despite the past. I believe this is something you should see as a good thing in yourself. Your a loving caring person after all.

If I found out Bridget had been unfaithful to me I believe I would still feel need to look after her. That’s the way we’re built. Seems a shame though that you can’t transfer some of that love to someone else. Perhaps, if you want, just try companionship. In the circumstances I think you deserve it.

 

[Old Flopsy]

@Dutchman What a beautiful and thoughtful reply to @Pusskins.

 

[Pusskins]

Hi @Pusskins. So here I am in the quiet of the house on a Saturday afternoon feeling lonely but glad I can speak to you.
I hope I understand the emotional connection you have for your husband even though he was unfaithful. He’s now the vulnerable one and there seems to be a need for you to protect him and love him despite the past. I believe this is something you should see as a good thing in yourself. Your a loving caring person after all.

If I found out Bridget had been unfaithful to me I believe I would still feel need to look after her. That’s the way we’re built. Seems a shame though that you can’t transfer some of that love to someone else. Perhaps, if you want, just try companionship. In the circumstances I think you deserve it.

@Dutchman Thank you. Time will tell how this all pans out. I'm impatient to move now and patience was never my strong suit! ?

 

[Dutchman]

Funny old day. Started ok but as the day wore on i found that the loneliness has sapped my energy to do anything. Went shopping and that’s it. Even that can an achievement sometimes.

Ive found a notebook I used for journaling my emotions and thoughts towards the end of Bridget living here, a few months before she left for the care home. What a mess our lives were then. At the time I was so upset by it all, the dementia behaviour, not recognising me, no washing, no clean clothes, the shouting, swearing, aggression. I was so sure I could be better off without all that but, immediately she left here, I thought I’d die without her.

I miss her completely and absolutely. As I came back from shopping today I looked up at our bedroom window and expected her to be there waving, like she used to, really pleased to see me.. Its like it’s all a nasty dream and I’ll wake up and it’ll all be alright.

Poppy has come up on the sofa next to me and purring. She’s getting quite brave. At least it’s a creature who wants affection in the house.

Don’t know about you but I struggle to put into words how I’m exactly feeling because this loneliness caused Bridget with dementia, away from me living a separate life, messes with my thoughts. When you’re on your own there’s no one to discuss anything with.

Peter

 

[Old Flopsy]

@Dutchman Yes it's the reality of separation that hurts when it isn't what you intended. I feel it too. Take care. I have applied to adopt an old pussy today- fingers crossed.

 

[Dutchman]

Hi @Old Flopsy . Best of luck with the cat. I just pleased I can give can older cat some peace and company

I’ve decided to opt out of various obligations I’ve signed up for. The pressures of being there for people is too much at the moment when I’m visiting Bridget and having to ride the wild horse emotions that seeing her brings.
Ive realised that in many respects I need to put myself first. And also, I get the feeling now that people I know assume that I’m ok, Bridget’s tidily tucked away in the care home so that’s good, why don’t I get on with my life now and stop making a fuss, and so on and so on.
You know what I mean
Peter

 

[Pusskins]

Hi @Old Flopsy . Best of luck with the cat. I just pleased I can give can older cat some peace and company

I’ve decided to opt out of various obligations I’ve signed up for. The pressures of being there for people is too much at the moment when I’m visiting Bridget and having to ride the wild horse emotions that seeing her brings.
Ive realised that in many respects I need to put myself first. And also, I get the feeling now that people I know assume that I’m ok, Bridget’s tidily tucked away in the care home so that’s good, why don’t I get on with my life now and stop making a fuss, and so on and so on.
You know what I mean
Peter

@Dutchman I daresay that for some of us, it just takes longer. Nice looking cat, by the way!

 

[blackmortimer]

I know exactly what you mean @Dutchman. There's no way I could "get on with my life". All I really want to do is crawl away like a wounded animal and lick my wounds. I couldn't sign up for anything that imposed an obligation because I never know from one day to he next how I shall feel. Last week I had a couple of things I had to do and it was like climbing a mountain. One was taking the car for its service which meant slogging all the way to Cambridge, waiting for a couple of hours while they did it, all the while thinking about past similar occasions when Margaret would have followed me in her car and taken me home to save the wait, which in turn took me further and further down memory lane. Then dealing with the bright young man in the service department, talking about things I really couldn't care less about, having to put a smiley face on, followed by another dispiriting slog back home. I ended up exhausted and in floods of tears. So, yes, I understand how you feel.

Good to hear that Poppy seems to be settling in. She'll be good for you I think. Your reference to shopping rings a bell.I often find myself coming back from the supermarket and telling the dog what I've been doing,how things are and so on as I come through the door. In fact, of course, I'm really talking to Margaret as I used to do whenever I came home particularly during the months before she went in to hospital when she was effectively house-bound and used to fret if I went anywhere. It's those every day so much humdrum things that I find I miss . All I can say is it's good that there are others here who understand.

God bless

 

[Dutchman]

Hi everyone. I think some of my clearest thoughts while I’m driving to see Bridget.

That’s why today I’ve realised that I’m just plain angry that I’m having go through all this misery every day which has been caused by Bridget getting dementia. I’m so tired of it all and I’m blaming her ( forgive me darling) for leaving me to cope with all this continual upset. Bridget seems ok in the home. Saw her through the window and she’s contentedly sipping her tea, have a biscuit why don’t you.

Me, I go home to another lonesome day. I stayed in bed too long this morning because I couldn’t muster to the energy to just get up.

peter