Dementia’s journey

[Dutchman]

Thank you all for your replies. It’s so heartening to have your friendship in these difficult times. Yes, it simply must get better with time and I hold on to that thought. I really do struggle sometimes to put feelings into words, after all what is happening or happened to us is beyond imagination and words, after all, don’t do justice to the hurt we feel inside.

in some replies it’s been said that I did a selfless thing putting Bridget into the home. But, I wasn’t able to be rational on that final day ( 23 August 2019) and the pressure had been building up over the previous months till I could take no more. I wasn’t courageous, brave or being selfless, just desperate.

so I arranged her care home ( behind her back) out of desperation and she was taken away not knowing where she was going.

its 22.30 now and there’s a comfort knowing that Bridget, like me, has gone to bed.

I appreciate how difficult it is for us to find words of comfort but to know you’re there is a comfort in itself.

With love

peter

 

[Dutchman]

Just in case anyone is wondering I managed to unblock the waste pipe. I put the Vax tube over the outlet pipe and sucked out the muck blocking the pipe.

 

[kindred]

Just in case anyone is wondering I managed to unblock the waste pipe. I put the Vax tube over the outlet pipe and sucked out the muck blocking the pipe.

Peter, I’m pretty sure yours is one of the most read threads on here, so many of us check in. You are helping us all by letting us join your journey, even down to the blocked sink.
Thank you so very much and congratulations
With love, kindred

 

[Dutchman]

The day started well. Up, showered, breakfast and decided to see Bridget this afternoon.

I’m back in bed ( that was probably a bad idea) and have decided not to visit today. I could say that’s the easy way out but when all’s considered I get so upset that I feel “why do this to yourself”. Is that selfish?

Yes, even mundane things like sinks can push us into being depressed. I’m using TP more or less like a blog because it helps me in many ways to release the hurt and upset for a while.

Grief like this is both universal and at the same time unique and personal. At least on our forum we can unload and know that everything is understood and appreciated.

Getting up now. Have as good a day as you can manage everyone.

peter

 

[Wifenotcarer]

I too have crumbled over a minor upset - my mobile phone has died. DD2 has taken it away when she dropped off my shopping but reports that it is indeed dead, the rechargeable battery will not charge. Since I fell and broke my arm in the Autumn, I have not gone anywhere, even into the garden, without my phone in my pocket. I had planned this week to take the car out for a wee run round about locally, just to charge up the battery as it has been sitting in the drive unused since lockdown began, but I dare not go without my phone, in case it conks out. Anyway I'll be going nowhere today, certainly not into the garden as it is blowing a gale with intermittent lashing rain. Apparently a tree has blown down and blocked the road out of the village, which adds to the feeling of being imprisoned.

Had a skype call with OH (or an older, deaf and inarticulate version of him) last evening. He had no idea who I was and soon toddled off, saying that he had 'things to do'. No blown kisses, no smiles, no jokes. nothing. I slept till late (alarm was in my mobile) but I am just dressed, in yesterday's clothes, not showered -what's the point??

 

[Dutchman]

Yes it’s difficult to motivated about anything. Trouble is if I don’t make an effort to keep clean I feel even worse and it sort of reminds me of Bridget’s lack of self care when she was here

i live on my phone now so I appreciate your stress about it.

spoke to the home today and asked them what do they think is going on in Bridget’s mind when I’m not around . They said in all probability from their experience, and watching Bridget, that she will forget quite soon that I’ve visited, she just lives in the moment now.

in one respect it’s good because she won’t fret over me. I’m the keeper of all the memories now and that upsets me knowing I’m her husband and she’s lost completely that connection.

im really sorry you got a bad experience when you went to see your OH. They can’t help it of course but that doesn’t lessen the pain

bless you

peter

 

[Dutchman]

One last observation before bed. Chatted to the children today and no one brought up the subject of their mum first, I had to tell them. Bridget’s on my mind 24/7 but for them I suppose they think I’ve got it all nailed down and there’s no point in asking. Mums taken care of , let life continue.

 

[jenniferjean]

Today I came across an astonishing song that I expect everyone but me knew about, it’s the Spanish coronavirus anthem. Resistere and the version with English subtitles is just amazing on this whole what is the point business.

Well I for one had not heard about it until I read your post, so I went in search of it. I had to play it not once but twice and I found the English translation rather powerful but I don't think would sound quite as good as in Spanish. But yes, reading the words was very moving. One bit in particular hit home - "When my enemy is me".

 

[kindred]

Well I for one had not heard about it until I read your post, so I went in search of it. I had to play it not once but twice and I found the English translation rather powerful but I don't think would sound quite as good as in Spanish. But yes, reading the words was very moving. One bit in particular hit home - "When my enemy is me". Bit that got me was the devil presenting his bill ... it’s one heck of a song.
Thank yoiu! Warmest, kindred

Oh YES thank you.

 

[Stacey sue]

Thank you for the music? Kindred, and your kind words. I think your amazing volunteering In the home. This is a hard journey and we all get through it in our own way. Quilt comes with the journey, Dementia is the cause of the quilt, I spoke to Dave today and said to him don’t you forget me!! Crying my eyes out,he said I won’t forget YOU!! He normally talks gobbledygook!! Who knows if he will remember after this lockdown?? Time will tell!!
This does help to know you are not alone,and others know what your going through.
Stacey Sue.x

 

[Dutchman]

Hello again @Dutchman (Peter)

I feel your pain - I lost my dear wife, Lyn, in mid January and although I miss her terribly, I am comforted that it happened before this current crisis took hold. So we were at least able to give her the send off she truly deserved.

The desperately hard thing has been dealing with all the grief since her passing. We had built up a very supportive circle of friends during the 6 year since being diagnosed but the lock-down has meant this support now consists mainly of texts, messaging and phone calls. Sure it's better than nothing, but I am missing the socialising and hugs, that were helping me get through it all immediately after her funeral.

The house had already become lonely since she had to go into nursing care in September, but the finality of it all takes it to another level.

I am coping (just) but it certainly does make you wonder at times, what is the point? I hope you can take comfort from the lovely replies that folk are sending you - we really are like an extended family?

Please feel free to send me a personal message at any time, if it would help.

Kind regards
Phil

Hi Phil

I can’t begin to imagine what your grief feels like. To say I do would be lying..

We can only be here for each other and in some small way hold each other up. If your feelings are anything near mine then they’re really awful. I try to fill my day with something but when you’ve had a companion for 30 years that shared all the ordinary mundane things couples share, then I feel very lost.

I try to grab hold of comfort by trying to convince myself that Bridget’s in the best place and that I couldn’t of gone on any longer while she was at home and wanting to escape. But there is always, always, always that nagging doubt that I drove her away with my unkind responses to her behaviour.

Part of me has been ripped away, like losing a limb , and I cannot come to terms with the absolute fact that she’s never coming home. I will be on my own the rest of my life. I cannot imagine it any other way.

The way our minds sabotage our emotions is cruel. When she was here I hated the way she had altered our lives. After she forgot I was her husband she insisted we visit our local hospital looking for him. We did this several times. To be shunned as her husband with no loving feelings was too much and I lost it many times and cried to be understood but it was impossible.

Now she’s not here I’m forgetting what it was like and how I wasn’t coping. I wish I could of taken film of that time to remind me of the devastation dementia was causing. On reflection I probably couldn’t watch it , it would be too upsetting.

best wishes. if I can help please post
Peter

 

[Dutchman]

I too have crumbled over a minor upset - my mobile phone has died. DD2 has taken it away when she dropped off my shopping but reports that it is indeed dead, the rechargeable battery will not charge. Since I fell and broke my arm in the Autumn, I have not gone anywhere, even into the garden, without my phone in my pocket. I had planned this week to take the car out for a wee run round about locally, just to charge up the battery as it has been sitting in the drive unused since lockdown began, but I dare not go without my phone, in case it conks out. Anyway I'll be going nowhere today, certainly not into the garden as it is blowing a gale with intermittent lashing rain. Apparently a tree has blown down and blocked the road out of the village, which adds to the feeling of being imprisoned.

Had a skype call with OH (or an older, deaf and inarticulate version of him) last evening. He had no idea who I was and soon toddled off, saying that he had 'things to do'. No blown kisses, no smiles, no jokes. nothing. I slept till late (alarm was in my mobile) but I am just dressed, in yesterday's clothes, not showered -what's the point??

Hi wife not carer.
Believe me I know how it feels to be not recognised by our OH. Towards the remaining weeks, when Bridget was here, she told me not to touch HIS clothes or anything she saw as her husbands. She also asked “ where do you live”. I think I’ve said most of this on earlier posts. I try to remember how that felt , together with all the other dementia moments, so I can just about justify Bridget going into care.

I’ve laid my heart out on TP over the past 9 months. But it’s mostly me complaining about what I’ve had to put up with, however justified it would appear to others.

But the other side is, of course, Bridget’s mental state. She seems fairly content in the home but back in August 2019 it must have been horrible for her here not being able to find ME, confused by the simplest things, no motivation to keep clean and in the end wanting to escape the house to live with her parents. At the time I was upset for myself but now I realise I didn’t appreciate her agony. Not that I could’ve done anything to help her as she was beyond reason.


in the quiet of the house now I cringe at my lack of compassion and total misunderstanding of her condition. I can’t help but judge myself about this and it’s now too late to redress the balance. I still can’t come to terms with the whole situation and perhaps never will.

peter

 

[Lirene]

Hi wife not carer.
Believe me I know how it feels to be not recognised by our OH. Towards the remaining weeks, when Bridget was here, she told me not to touch HIS clothes or anything she saw as her husbands. She also asked “ where do you live”. I think I’ve said most of this on earlier posts. I try to remember how that felt , together with all the other dementia moments, so I can just about justify Bridget going into care.

I’ve laid my heart out on TP over the past 9 months. But it’s mostly me complaining about what I’ve had to put up with, however justified it would appear to others.

But the other side is, of course, Bridget’s mental state. She seems fairly content in the home but back in August 2019 it must have been horrible for her here not being able to find ME, confused by the simplest things, no motivation to keep clean and in the end wanting to escape the house to live with her parents. At the time I was upset for myself but now I realise I didn’t appreciate her agony. Not that I could’ve done anything to help her as she was beyond reason.


in the quiet of the house now I cringe at my lack of compassion and total misunderstanding of her condition. I can’t help but judge myself about this and it’s now too late to redress the balance. I still can’t come to terms with the whole situation and perhaps never will.

peter
I am sorry, so very sorry xx

 

[Lirene]

Hi wife not carer.
Believe me I know how it feels to be not recognised by our OH. Towards the remaining weeks, when Bridget was here, she told me not to touch HIS clothes or anything she saw as her husbands. She also asked “ where do you live”. I think I’ve said most of this on earlier posts. I try to remember how that felt , together with all the other dementia moments, so I can just about justify Bridget going into care.

I’ve laid my heart out on TP over the past 9 months. But it’s mostly me complaining about what I’ve had to put up with, however justified it would appear to others.

But the other side is, of course, Bridget’s mental state. She seems fairly content in the home but back in August 2019 it must have been horrible for her here not being able to find ME, confused by the simplest things, no motivation to keep clean and in the end wanting to escape the house to live with her parents. At the time I was upset for myself but now I realise I didn’t appreciate her agony. Not that I could’ve done anything to help her as she was beyond reason.


in the quiet of the house now I cringe at my lack of compassion and total misunderstanding of her condition. I can’t help but judge myself about this and it’s now too late to redress the balance. I still can’t come to terms with the whole situation and perhaps never will.

peter
I am sorry, so very sorry xx

 

[kindred]

Peter, I rarely find peace, I think one answer, one tiny point of light is to stick together on here, as you help us to do and I am so grateful.
with love, Geraldine

 

[Dutchman]

Hello Kindred

you’re right In that being part of this TP community is of great benefit. I have done and will continue to lay my feelings out there because it’s largely the best way of giving me some reason to get through the day.

Kindred, I have to say, your posts and your support for me in particular has been wonderful and I’m humbled to know how giving you are. I repeat myself many times, I know, but the emotions are the same and I just go round and round in circles. I'm reminded of the words of a Jonie Mitchell Song “ the beds too big the frying pan’s too wide”. The ordinary things just get you.

Yes, let’s stick together through thick and thin. I won’t stop if you don’t.

To my fellow TP posters........all my loving kindness to you all.

peter

 

[Batsue]

Look after yourself and if that means staying in bed sometimes don't worry just snuggle down.

 

[Philbo]

Hi Peter (@Dutchman ) and others

Its certainly true that though I did my upmost best to take good care of my wife for over 6 years, there were the inevitable times when my halo slipped. Anger, frustration, desperation, despair, you name it - I sometimes let my emotions show. The guilt and pain of reflecting back on those times can eat away at you and in these crazy times, there's just too much time to beat yourself up?

In some respects, the previous 6 years had made me more hardened to dealing with the tragedy of it all - or maybe I just became desensitised? Her passing certainly brought me back to reality with a bang!

In the short time between her funeral (mid Feb) and the start of this pandemic, I did feel determined not to let dementia destroy me too. Yes I was grieving (48 years of happy marriage all gone) but something told me I must keep going.

The current situation and resulting lack of social contact etc has dented my determination somewhat, but I met up with one of my sons today and we went for a long walk (6 miles). We chatted about all sorts of things, including how hey feels, what I am going to do moving on and although it was inevitably emotional, it was good to talk things through. Sure I didn't reach any definite conclusions but it certainly lifted my spirits up a little.

I am lucky to have loving family and great friends but it's also a great asset having like minded lovely members of this forum to laugh, cry, rant and seek support from.

I sincerely hope Peter that you can hang on to all the positive, happy things of your life with Bridget and put all the negative things that make you sad and anxious, away in the little compartment in your brain labelled "open when your are feeling stronger".

Best wishes
Phil

 

[Dutchman]

Hello everyone. Today is the day I get myself involved in arranging council funding for the home. The council are phoning tomorrow to advise of the details which I suspect are not easy to understand. I’m getting as much together as I can but I’m bound to miss something. It’s scary as it’s a major step that I have to get right.

if anyone has tips, advice, anything really that would help, I would very grateful.

bless you all

peter

 

[kindred]

Hello everyone. Today is the day I get myself involved in arranging council funding for the home. The council are phoning tomorrow to advise of the details which I suspect are not easy to understand. I’m getting as much together as I can but I’m bound to miss something. It’s scary as it’s a major step that I have to get right.

if anyone has tips, advice, anything really that would help, I would very grateful.

bless you all

peter

It may not be as scary as you think Peter. Bank statements covering Bridgets accounts if that still applies, plus any savings she has, joint account statements. Bridgets pension details. It is a major step so keep notes of the conversation and the info you pass to them. It will be a good thing to have this set in motion.
Love, Geraldine