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Dementia’s journey

Dutchman

Registered User
May 26, 2017
714
Devon
No you are not selfish @Dutchman It is this terrible disease that has done this. How are you expected have rational feelings when your life has been so irrational for so long. This dementia has invaded every aspect of our lives and you can't just get over it and feel normal when the person is still here in body but not the same person they were.

I feel for you I really do. The guilt is awful but it is not your fault. You sound like such a lovely and caring man and I hope that you can find some way of feeling better in yourself because you deserve to.
i
caring man and I hope that you can find some way of feeling better in yourself because you deserve to.
I found out today that my wife has got thrush in her mouth so that why shes off her food. Seems that giving antibiotics for UTIs also gets rid of the good stuff in the mouth and lets the bacteria in. Medicine being given today.

I’m all over the place sometimes with this awfulness of this situation. It affects all I think and do. I sometimes dread going to see her because of the unhappiness she shows in her face and that upsets me.

I have these thoughts that I can’t express to anyone apart from the forum. I think that perhaps life would be less upsetting if she passed away. Her life can’t be that happy in the home and as my wife she stopped being my friend, lover, companion and my everything some time ago. But, my goodness, I would miss her and can’t imagine ever getting over that.

We’re stuck aren’t we in this circle of guilt, sadness, helplessness and stress
I always thought this would happen to other people, not us.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,552
Kent
I don't know what to say to you @Dutchman. You sound in such a really dreadful place .

I was as devastated as you when my husband went into residential care but I knew I wasn't managing and so it was something I faced with a heavy heart.

He did settle. I told him the doctor wanted to build his strength up because he was becoming so frail. It gave him hope even though it was false hope and it made it easier for me

Eventually I learnt to live with our situation . It was one of the hardest lessons of my life

I hope the day will come when you can come to some sort of acceptance. Your wife is very poorly and needs the best care possible. You have enabled her to have this even though it has left you heartbroken.
 

kindred

Registered User
Apr 8, 2018
2,462
i
I found out today that my wife has got thrush in her mouth so that why shes off her food. Seems that giving antibiotics for UTIs also gets rid of the good stuff in the mouth and lets the bacteria in. Medicine being given today.

I’m all over the place sometimes with this awfulness of this situation. It affects all I think and do. I sometimes dread going to see her because of the unhappiness she shows in her face and that upsets me.

I have these thoughts that I can’t express to anyone apart from the forum. I think that perhaps life would be less upsetting if she passed away. Her life can’t be that happy in the home and as my wife she stopped being my friend, lover, companion and my everything some time ago. But, my goodness, I would miss her and can’t imagine ever getting over that.

We’re stuck aren’t we in this circle of guilt, sadness, helplessness and stress
I always thought this would happen to other people, not us.
Yes, you describe that circle so profoundly, Dutchman. It is agony and all thoughts and sympathy to you. Your thoughts are perfectly normal, of course they are. This situation is prolonging the agony. Please think of your visits to her as investments in the future, however strange this sounds (and you know I have been through this recently myself), so that you can know you saw her as much as you could, however she was.
with love, you are a good man. Geraldine
 

Lirene

Registered User
Sep 15, 2019
184
I too am going through a very similar situation with my husband. It would be better for him if he passed away suddenly, and for his release I pray. It is the most heart breaking time of my life watching the mental torture my husband is suffering.
My heart goes out to you xx
 

Lilac Blossom

Registered User
Oct 6, 2014
564
Scotland
"We’re stuck aren’t we in this circle of guilt, sadness, helplessness and stress"

I, too, am in this situation with hubby in care home - I had no idea it was possible to experience this level of sadness and loss. I am in tears on my way home every time I leave him.

Lilac xxxx
 

Dutchman

Registered User
May 26, 2017
714
Devon
"We’re stuck aren’t we in this circle of guilt, sadness, helplessness and stress"

I, too, am in this situation with hubby in care home - I had no idea it was possible to experience this level of sadness and loss. I am in tears on my way home every time I leave him.

Lilac xxxx
You know what does it for me? It’s the look of abandonment in my wife’s eyes as I go to leave. You could fill a bath with the tears I’ve cried over her looking at me when I leave. I cry but then I tell myself what will that accomplish apart from feeling sorry for myself and that reinforces the feeling that I have selfish emotions.

I find you can never come out of this whirlwind of dementia without feeling damaged in some way. At least this time at night (22.55) I’m at peace knowing that she is also going to bed and I feel close. I just wish I could cuddle up and put my arm around her and protect her from this cruel world.
 

Dutchman

Registered User
May 26, 2017
714
Devon
I don’t mind admitting it but apart from a bit of shopping I’ve spent most of my day in bed. Got a bit of a cold so felt sorry for myself. I’m out tonight for a few hours.

I’ve also spent most of the day trying to come to terms with the fact that I haven’t been in to see my wife today. Went in yesterday but I get so upset when I see her and so upset when I leave her that I wanted a rest from these emotions. The whole business of my wife being in the home has turned my life upside down and I have feelings of neglecting her, even though many tell me I deserve a break for my own wellbeing.

Without his forum I don’t know how I would have through so far. The Admiral Nurses have been a lifeline too. Bless you all for your kindness and support.
 

Lirene

Registered User
Sep 15, 2019
184
You will always love and care for your wife and others may love and care for a while.
Rest your mind for a second, a minute -she’s loved and being loved.
Rest your mind for a second, a minute - you’re loved and being loved.
Rest your mind for a second, a minute -
you’ll always love her - as she will you.
Rest your mind for a second, a minute -
you’ll always think of her - as she will you.
Rest your mind for a second, a minute - you will always be part of each other’s soul, for this is love - one soul together.
Prayers xx
 

kindred

Registered User
Apr 8, 2018
2,462
I don’t mind admitting it but apart from a bit of shopping I’ve spent most of my day in bed. Got a bit of a cold so felt sorry for myself. I’m out tonight for a few hours.

I’ve also spent most of the day trying to come to terms with the fact that I haven’t been in to see my wife today. Went in yesterday but I get so upset when I see her and so upset when I leave her that I wanted a rest from these emotions. The whole business of my wife being in the home has turned my life upside down and I have feelings of neglecting her, even though many tell me I deserve a break for my own wellbeing.

Without his forum I don’t know how I would have through so far. The Admiral Nurses have been a lifeline too. Bless you all for your kindness and support.
And bless you for talking so openly about your feelings and enabling us to do so too. Warmest, kindred.
 

Dutchman

Registered User
May 26, 2017
714
Devon
I went in to the home this evening to change her, clean her, get her ready for bed and she put up a bit of resistance. Bit of the old determination coming back. While it made more difficult for me to undress and dress a moving woman it showed me again how difficult it would be if this was constant all day back at our house. I attempted a cuddle and she pushed past me. She cannot comprehend now wanting to be close and loving. I stayed about 45 mins as it upsets me too much.
 

Lirene

Registered User
Sep 15, 2019
184
I am so very sorry. It is very difficult to come to terms with our loved ones not wanting to be loved or returning the love we feel for them. Both my husband and mother have dementia and often turn away when I go to kiss them, it is heartbreaking and a very cruel side to this disease. We, who are on the outside, are left floundering trying to carry on as best we can whilst our hearts are in pieces. Prayers xx
 

northumbrian_k

Registered User
Mar 2, 2017
1,029
Newcastle
It is difficult. I was warned by staff that my wife was in an aggressive mood yesterday and she certainly was. After less than 20 minutes I beat a retreat with my sister as my wife had told us both that she did not like us. It looked likely that I was going to get thumped so we left as we were only making things worse. But I will not let it get to me as it was dementia not my wife that was talking. I just have to hope for a better reception next time.
 

Lirene

Registered User
Sep 15, 2019
184
Yes, I agree that just being there makes it worse. My husband was actually in a reasonable mood today however, his much darker side suddenly appeared and I was, as usual, directly in the firing line. I also beat a hasty retreat but will be there again tomorrow under fire. Will visit mum first, so possible double trouble. Love and hugsxx
 

Dutchman

Registered User
May 26, 2017
714
Devon
"We’re stuck aren’t we in this circle of guilt, sadness, helplessness and stress"

I, too, am in this situation with hubby in care home - I had no idea it was possible to experience this level of sadness and loss. I am in tears on my way home every time I leave him.

Lilac xxxx
Hi Lilac

In some respects
I am so very sorry. It is very difficult to come to terms with our loved ones not wanting to be loved or returning the love we feel for them. Both my husband and mother have dementia and often turn away when I go to kiss them, it is heartbreaking and a very cruel side to this disease. We, who are on the outside, are left floundering trying to carry on as best we can whilst our hearts
It is difficult. I was warned by staff that my wife was in an aggressive mood yesterday and she certainly was. After less than 20 minutes I beat a retreat with my sister as my wife had told us both that she did not like us. It looked likely that I was going to get thumped so we left as we were only making things worse. But I will not let it get to me as it was dementia not my wife that was talking. I just have to hope for a better reception next time.
I’m actually not in a good place this morning. Found it difficult to get up and now I’m sitting downstairs feeling very sad and lonely. My wife is away and I’m here and it just doesn’t seem fair that neither of us deserve to be apart. I don’t cry quite so much any more but there’s this deeper feeling of absolute separation that will be with me for the rest of my life.
 

Lirene

Registered User
Sep 15, 2019
184
I am so sorry, I know you are in a truly heartbreaking situation. Please try and go for a walk, long or short, each day especially if you are near a park, river or sea shore. Take time to breathe, listen to the sounds. It may take a while, but let nature listen to the thoughts racing round in your head and try to help the hurt in your heart and soul. We are all with you in your journey, walking side by side each day.
Bless you and praying for you xx
 

Dutchman

Registered User
May 26, 2017
714
Devon
Has anyone struggled with the temptation to get a dog. Not for just company but a reason to get up in the morning ( I find this the most difficult decision of the day).

I’ve tried an adult cat but after being scratched and it climbing bookcases it was returned. Never had a dog so advice would be welcomed.
 

Lirene

Registered User
Sep 15, 2019
184
My dog has been an enormous help for me. I talk to him, take him out and about and nearly everyone stops to speak when you have a dog. The emotional attachment is a wonderful thing, he senses when I am upset and tearful and comes to give me so much comfort. Dogs are such wonderful companions but worth every second of our love xx
 

Woo2

Registered User
Apr 30, 2019
2,310
South East
I have just been watching in the Doghouse (rehoming programme) . There are so many lovely dogs out there just needing love and time . They are wonderful support and yes give you a reason to get up and are always happy to see you , but they are a tie, have you read @AL60 ’s thread ? He got a dog and it’s been great for him and taking in to visit his wife . I am a big dog lover /owner so I would say yes but please give it plenty of thought .
 

notsogooddtr

Registered User
Jul 2, 2011
933
Has anyone struggled with the temptation to get a dog. Not for just company but a reason to get up in the morning ( I find this the most difficult decision of the day).

I’ve tried an adult cat but after being scratched and it climbing bookcases it was returned. Never had a dog so advice would be welcomed.
Is there a chance of walking a dog?The Dog's Trust accept volunteers,there might be a charity near you.I have never had a dog but I know there are more demanding in terms of time(and everything else!)than cats.My advice would be not to rush into iy
 

Lirene

Registered User
Sep 15, 2019
184
That’s such a good idea to try dog walking, pet sitting etc for a little while. Why not put an advert in a shop window near where you live - you never know !!
Love and hugs xx