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Dementia’s journey

Dutchman

Registered User
May 26, 2017
613
Devon
I thought I’d do some sorting out so bought an extra shelving unit (flat pack) and while putting it together sitting on the floor I ended up near our stack of photo albums and what ever possessed me to choose one to look at! Stupid move!

We were camping and having fun just mucking about, joyful and fresh. We were so much younger then and my beautiful wife (a teacher) in the photos was full of life, intelligence, confidence and now she can’t even remember her name.
Dementia was something then that others suffered with, we thought we’d always go on enjoying our lives safe in each other’s company.

Today she continues not to eat much and is very confused. I cannot look again at any photos of us as the memories are too strong and makes her declining health even more raw for me to bear.

I guess I’m no different from any other forum member who really have , in all honesty, lost forever their loved ones compared to those wonderful early days when lots of things were possible.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,137
Kent
We were so much younger then and my beautiful wife (a teacher) in the photos was full of life, intelligence, confidence and now she can’t even remember her name.
It`s so sad I know.

I protect myself by trying not to look back. Living in the present is hard enough.
 

jenniferjean

Registered User
Apr 2, 2016
741
Basingstoke, Hampshire
I protect myself by trying not to look back.
I'm doing the opposite at the moment. I'm in the process of making scrapbooks for my grandsons. Scrapbooks of their dad, my son who we lost four years ago, growing up. Most of the time I'm coping fine with the photos of my son, but yesterday I came across a photo of me with my family taken many years ago. My husband looked so handsome. It's not that I'd forgotten how gorgeous that man once was, it's just that I don't tend to think of that now. All I think about is the empty shell that he's become.
 

Dutchman

Registered User
May 26, 2017
613
Devon
I was due to go to the home today to take my wife out and have some breakfast at a local cafe. Thought it might help her appetite. I’m terrible really because when I awoke I had absolutely no motivation to go anywhere so in my mind I’ve abandoned her again. Friends say today she won’t remember but I know what I haven’t done and feel dreadful.

I’m isolated here with her in the home so it’s all down to me. Family are miles away. No taking over at a moments notice to give me a break. There’s only so much one person can do and I suppose I should cut myself some slack. Hard when you love someone no matter what. I’ll try again tomorrow.
 

Pete1

Registered User
Jul 16, 2019
717
Hi @Dutchman, you haven't abandoned your wife, reality is that this is so horrendously difficult for anyone in your position. You clearly love your wife deeply and there will be days when you can't face this daunting situation, but please try not to let the ball of guilt grow inside you. I think how you have summed it up 'I'll try again tomorrow' is spot on, try and put today behind you. Stay strong, I wish you all the best.
 

Dutchman

Registered User
May 26, 2017
613
Devon
Hi @Dutchman, you haven't abandoned your wife, reality is that this is so horrendously difficult for anyone in your position. You clearly love your wife deeply and there will be days when you can't face this daunting situation, but please try not to let the ball of guilt grow inside you. I think how you have summed it up 'I'll try again tomorrow' is spot on, try and put today behind you. Stay strong, I wish you all the best.
Thanks for your encouragement and fellowship feelings. I don’t know how I would have got this far without the friendship and care of someone like yourself and other who care on this forum.
 

Lirene

Registered User
Sep 15, 2019
174
Even when you care so very deeply for someone, you have days where you feel isolated completely from family, friends and your loved one. Your mind is telling you one thing after another and your brain is in turmoil. Obviously today mind, brain and body need rest. Take the rest, try and ease up on yourself, tomorrow is another day. It’s winter, dark and cold everything wants to hibernate. Listen to your inner self, try and erase today from your mind - it’s gone - today is now yesterday. Today we try, again xx
 

Dutchman

Registered User
May 26, 2017
613
Devon
Even when you care so very deeply for someone, you have days where you feel isolated completely from family, friends and your loved one. Your mind is telling you one thing after another and your brain is in turmoil. Obviously today mind, brain and body need rest. Take the rest, try and ease up on yourself, tomorrow is another day. It’s winter, dark and cold everything wants to hibernate. Listen to your inner self, try and erase today from your mind - it’s gone - today is now yesterday. Today we try, again xx
Today, well it’s raining for a start and, to be honest, the last thing I want to do is visit the home to see my wife and how she seems to be unhappy lately. I will go later....I must make the effort.
The day is empty of anything to do although I could tidy, sort stuff, clean, do things like that. Go for a walk later perhaps.

I’m still in bed (11.00). This is becoming a bad habit but I’m warm and comfortable. I’m never going to be free of the feeling that she has been put away in a care home. I know the argument about its best for her, I couldn’t cope at home, she’s looked after and other reasons but the fact remains that she’s not here, with us enjoying life together.

Is she lonely I wonder? Is she depressed and unhappy and how can I get through these days always worried about her.
Anyway, those are my feelings today. Nothing much changes does it ?
 

kindred

Registered User
Apr 8, 2018
2,413
Today, well it’s raining for a start and, to be honest, the last thing I want to do is visit the home to see my wife and how she seems to be unhappy lately. I will go later....I must make the effort.
The day is empty of anything to do although I could tidy, sort stuff, clean, do things like that. Go for a walk later perhaps.

I’m still in bed (11.00). This is becoming a bad habit but I’m warm and comfortable. I’m never going to be free of the feeling that she has been put away in a care home. I know the argument about its best for her, I couldn’t cope at home, she’s looked after and other reasons but the fact remains that she’s not here, with us enjoying life together.

Is she lonely I wonder? Is she depressed and unhappy and how can I get through these days always worried about her.
Anyway, those are my feelings today. Nothing much changes does it ?
All sympathy, Peter. The situation is putting you in limbo, so not much is likely to change really. I am so sorry these regrets are tormenting you like this. Maybe best to go and see her as much as you can, see her face, touch her skin. Then there really really will be less to torment you with regret in the future.
warmest, Kindred, and you know I've been there too.
 

Dutchman

Registered User
May 26, 2017
613
Devon
I went to the homes Christmas party last night and they’d put on a large spread of all sorts of food. Bridget had a few mince pies, Jaffa cakes not much else and I got a little frustrated with trying to get her to eat more healthy food. At this rate she’s going to deteriorate even though she does drink protein drinks sometimes.

I have to be a realist and face the probability that 2020 will her last year if things don’t alter. This is all too much for me to contemplate and I’m actually trying to numb it out in my mind to make more bearable.

I’m the only spouse that goes to the home, more or less sons and daughters and it hits me every time I go how our loving closeness is being challenged by her changed relationship to me.
 

Pete1

Registered User
Jul 16, 2019
717
Hi @Dutchman, please don't worry too much about your wife eating healthily, let her eat what she fancies I don't really think that will affect her now. In the end I was just fetching ice-cream for Mum. I think the relationship inevitably changes, be it husband and wife or Mother and son/ daughter. I remember taking my Mum to see my Dad when he was in care (both my parents ended up with dementia, although at that time Mum was 'fine') she had looked after him for quite sometime at home until it was unfair to all. She was absolutely distraught after every visit, and she (unbeknownst to me at the time) was suffering depression and ended up taking anti-depressives. Dad had a number of personality changes which made it extremely difficult. But like you Mum remained devoted to him until the end. I know this is easy to say, but you can't look too far ahead, you are supporting and loving your wife in the way that you can now and that is all that matters.
 

Grahamstown

Registered User
Jan 12, 2018
1,668
80
East of England
I am so sorry @Dutchman and I know how you feel because my husband is refusing to eat and he is sustained by supplements together with whatever else I can get him to eat, banana, mince pie and cream, ovaltine drinks, chocolates, ice cream, rice pudding and so on. Proper healthy food he refuses except for plaice dressed with cream. It breaks my heart as he is reduced to a skeleton now. I have accepted that it is the illness and I have no control over it and nor has he. I stopped fighting a while ago as it was too stressful for both of us. I sometimes wonder if he would be better in a care home but, like you, I am very conflicted about it. I think I shall know when I can no longer cope just as you did. It’s the acceptance that’s hard. I just KBO at the moment as best I can.
 

Dutchman

Registered User
May 26, 2017
613
Devon
Just getting this down out of my head and heart and towards my friends on this forum.

I was still in bed at 12.00 this morning void of any motivation to get up because there is nothing to get up for. I cried for myself and I cried for us both ‘why us , why, when others have each other has dementia torn us apart and my wife is slowly drifting away ‘. It isn’t fair.

I was due to go to see my Bridget today but I’m filled with dread during the journey and the moment I open the homes front door.

In the end I contacted the Admiral Dementia nurse because I didn’t know what else to do. Do not go in today she said as your unhappiness could upset Bridget. You may believe what you are going through is wrong but it’s the most normal emotions in your circumstances. Accept that there will be bad days and this is an extreme example of one. Take the day off.

She told me to phone the home to get an update and she suggested methods of trying to Bridget to eat. This I’ve done.

If I’m like this now God alone knows what I’ll be like when she fades away and is gone. I’ve done all I can to help myself; prescribed medication, Dementia specific counselling, support from family and friends and my church but, when all’s said and done, you find yourself alone with all of this.

Bless you all, Peter
 

deepetshopboy

Registered User
Jul 7, 2008
252
Just getting this down out of my head and heart and towards my friends on this forum.

I was still in bed at 12.00 this morning void of any motivation to get up because there is nothing to get up for. I cried for myself and I cried for us both ‘why us , why, when others have each other has dementia torn us apart and my wife is slowly drifting away ‘. It isn’t fair.

I was due to go to see my Bridget today but I’m filled with dread during the journey and the moment I open the homes front door.

In the end I contacted the Admiral Dementia nurse because I didn’t know what else to do. Do not go in today she said as your unhappiness could upset Bridget. You may believe what you are going through is wrong but it’s the most normal emotions in your circumstances. Accept that there will be bad days and this is an extreme example of one. Take the day off.

She told me to phone the home to get an update and she suggested methods of trying to Bridget to eat. This I’ve done.

If I’m like this now God alone knows what I’ll be like when she fades away and is gone. I’ve done all I can to help myself; prescribed medication, Dementia specific counselling, support from family and friends and my church but, when all’s said and done, you find yourself alone with all of this.

Bless you all, Peter
Yes you do because nobody understands the pain your going through best thing about this forum is many many people can understand and resonate fully
Above all your only human you can only do so much .your despair come through in your posts .its a evil disease cruel and nasty
dont beat yourself up no advice as there no magic wand but short term to take your mind off it have a bath read newspaper go for a walk will maybe , maybe make you feel a tiny bit better short term don’t feel quilty x
thoughts and hugs x
 

Lirene

Registered User
Sep 15, 2019
174
Peter, you are in such a dreadful place, your mind is tortured and my prayers are for you. However, if roles had been reversed and your beloved Bridget was where you are now what would she be doing? She would put her feelings aside, a sensitive, caring lady, she would have been there by your side enjoying what time you have together, loving each second, and each tender touch, holding on to memories long forgotten. Only us and the Lord know what is in our mind. You have absolutely no idea what Bridget is thinking, no one has. There maybe nothing in her eyes but still things in her brain, her brain still registers a kiss, a touch, a stroke of her hair. She may not register it outwardly but her brain does, she can still hear your voice her brain still registers sound. Our thoughts are our own sacred private world, similar to saying our own prayers.
Bridget’s once alert mind is still alive, just a little dimmed at times.
Please, please don’t give up on her Peter pray for help and strength to continue. Roles reversed, Bridget would not have let this break her so don’t let it break you because you can’t fail her now can you ?xx
 

kindred

Registered User
Apr 8, 2018
2,413
Just getting this down out of my head and heart and towards my friends on this forum.

I was still in bed at 12.00 this morning void of any motivation to get up because there is nothing to get up for. I cried for myself and I cried for us both ‘why us , why, when others have each other has dementia torn us apart and my wife is slowly drifting away ‘. It isn’t fair.

I was due to go to see my Bridget today but I’m filled with dread during the journey and the moment I open the homes front door.

In the end I contacted the Admiral Dementia nurse because I didn’t know what else to do. Do not go in today she said as your unhappiness could upset Bridget. You may believe what you are going through is wrong but it’s the most normal emotions in your circumstances. Accept that there will be bad days and this is an extreme example of one. Take the day off.

She told me to phone the home to get an update and she suggested methods of trying to Bridget to eat. This I’ve done.

If I’m like this now God alone knows what I’ll be like when she fades away and is gone. I’ve done all I can to help myself; prescribed medication, Dementia specific counselling, support from family and friends and my church but, when all’s said and done, you find yourself alone with all of this.

Bless you all, Peter
Bless you, too, Peter. Lirene's thoughts are so wise. Also, staying in bed, warm and safe is actually a healthy way to cope with the kind of shock and trauma you are going through. We need to protect our own resources. Slo many of us are here, thinking of you, wishing you some calm. Geraldine
 

Dutchman

Registered User
May 26, 2017
613
Devon
Just had a terrible time with Bridget. I thought as a treat I’d take her to the local garden centre that has a cafe. Her first taste of outside for some time.
She responded almost like she hasn’t got dementia, getting herself to the table, eating properly (all very weird) and then we walked around and I bought a nice cake for the staff

When we got back to the home her taste of freedom rebounded back on me. She got very agitated and wanted to go out again asking, pleading strongly, almost begging and when I said no she looks at me daggers and eventually I make my escape.

How am I supposed to live like this, in this world of anxiety and stress. Just me to handle all this. My children are very supportive but too far away to make a difference right now, when I need to cry on someone’s shoulder.

I’ve been told that I reacted this way because I love her so much. What other way is there? Do you avoid love so’s not to get hurt?
 

Lirene

Registered User
Sep 15, 2019
174
What you experienced is the ‘Deviousness of Dementia’ extract of which is contained within these threads. Please read it if you can as it gives an insight into ‘their’ world and ‘their’ thinking process.
As for today, you and Bridget obviously had a good time at the garden centre a memory for you to cherish a glimpse of a Bridget you thought you had lost. And afterwards, well she had obviously enjoyed it, enjoyed being out with you and wanted it to last - to be done over again. Rejoice in that thought - she wanted it to be done again. So do it again and soon !
As for the tantrum, well the adult toddler stamped her feet in sheer frustration because she’d enjoyed herself - with you.
We are all guilty of wanting a good time to last and never end. Bridget is not on her own there. Cherish the good today, how she looked, how she loved the enjoyment of it all. It was her day, everything you do is for her. You will cope, you won’t give up because Bridget is the love of your life, she is your life and you are her life. Without you she is nothing - she needs you in her life and believe me you need her too. My prayers are for you both xx
 

kindred

Registered User
Apr 8, 2018
2,413
Just had a terrible time with Bridget. I thought as a treat I’d take her to the local garden centre that has a cafe. Her first taste of outside for some time.
She responded almost like she hasn’t got dementia, getting herself to the table, eating properly (all very weird) and then we walked around and I bought a nice cake for the staff

When we got back to the home her taste of freedom rebounded back on me. She got very agitated and wanted to go out again asking, pleading strongly, almost begging and when I said no she looks at me daggers and eventually I make my escape.

How am I supposed to live like this, in this world of anxiety and stress. Just me to handle all this. My children are very supportive but too far away to make a difference right now, when I need to cry on someone’s shoulder.

I’ve been told that I reacted this way because I love her so much. What other way is there? Do you avoid love so’s not to get hurt?
Peter, I see this such a lot. When husbands, wives, children, take their loved ones out there is so often a transition time when goodbyes are about to be said and their beloved family member turns on them. Please believe me that this bad mood does not often last for long and staff are able to steer it to happier times. But of course I understand the effect on you. And as you say, the constant anxiety and stress. There is not always a shoulder to cry on, I experienced this for several years until Keith went into the nursing home where the staff were miracles of love and care for families as well as the residents.
Much strength to you in the job you have to do. It's one of the toughest in the world.
And as to avoiding love so not to get hurt, at the moment, I feel I would in the future. I could never go through all that again
warmest, Geraldine