Trying to stay positive

PalSal

Registered User
Dec 4, 2011
972
0
Pratteln Switzerland
Bad day with Nick yesterday. He was being stubborn. Refusing to sit down on the toilet at my daughters house,(doesn't matter at my house I have given up!.) Going to the bathroom when we are out is his favorite activity) so we locked him out of access to her bathroom.

I was irritated and very very fed up with him. He had a long walk with his carer in the morning but put on his dirty shoes again afterwards and was bored and discontent. He would not take off his hat, gloves and coat and dirty boots!! He had had a beautiful 2 hour walk with his carer! I wanted him to just chill for a bit and not have to be cared for. And then I had to clean up the mess on the floor, which his dirty boots tracked thru my clean house which is how I had used my morning while he was out having a walk!

Then during the night on Tuesday/Wednesday, he got up and had some kind of loose bowel movement, there was excrement on the floor and the rug, and foul toilet bowl for me to greet at the start of my day today. I was very irritated and feed up with him, before I even started today. I have cleaned it up and will give him a bath soon enough. What is my part in all this? Not accepting his progressive disease, reverting to my old protection mode of anger rather than accepting where he is now. It keeps me from being vulnerable and sad about our lives and current situation.

I am feeling strange again about the lack of love and real companionship. It is strange to live with someone and to feel so little for them. To only see them as a burden and not giving to me in my life. How can I see Nick as a person again….it helps in the morning when I give him his kiss and hug? There is that moment when we are connected and in that moment I do remember I loved him dearly, and I do it every morning in an effort to stay connected to him. Although, I do the action it does not sustain me throughout the day. When I hold him in my arms I do feel love for him and I do remember what a good person he was and what a gentle man he is still most of the time. I must practice HALT…Hungry, Angry, Lonely , Tired. And just stop!!! Remembering nothing really matters, it does not matter if I am on time somewhere. It does not really matter if there is excrement on the floor, and rug or on him for that matter. It all washes it can all be cleaned up.

The real truth, I have cared for Nick at home for so long, because I fear a change in my lifestyle, that is why he is at home. I fear I would be impoverished if he were to go into an expensive institution. I fear financial insecurity and fear of an "even lesser" lifestyle. I do not know this to be true, perhaps my worst fears would never be realized.

But I must be grateful for all that I have, enough money and support today. Two local children who are loving and supportive.His family in the Uk who do their best to stay connected and give some financial support for one day of daycare a week. Which all helps me to keep Nicky at home. And carers on contract so I can get out of the house and not be isolated.

I am going to get us dressed and out into the world. I will buy and advent wreath this year rather than making one. We will do our best to start this day again and find those moments of joy and gratefulness. What choice do we have.....
 

Wildflowerlady

Registered User
Sep 30, 2019
1,103
0
Oh gosh your post has made me cry. I have a dad with mixed dementia Vascular/Alzheimers. I don't live with dad aged 85 years he still lives in his own home with carers four visits per day but I do see him around 5 days per week visiting in the afternoon. We as in my sister and I have dealt with anger, toileting issues and his frustration for three years. We do a lot for dad but at least we are able to go home. Reading your post I understand what you mean about how your feelings towards partner as I too struggle with my dad. Some visits are upsetting if he is moody or not nice. I began to feel really estranged from dad this year less of a daughter and more of a carer he was quite happy to tell me it was my job to clean him up if he had soiled which he does regularly. Of course I would do this if necessary but I cannot say I felt comfortable doing it after all he's my dad it kinda felt wrong. In truth when my partner needed me more this summer I felt happy/relieved to support him lessening time spent with my dad. In doing this I have re-connected a bit have become more a daughter again it feels better and I think dad and I get along more now. I also feel that it was time my partner had the support he needed as he had a heart attack last year but we had muddled through giving dad a lot of my time.
My partner at home has Parkinson's he's now 77 years old he is becoming less able physically and we are aware that he is at a higher risk than average of dementia too. We are praying he doesn't get dementia as seeing dad has made us so aware of the changes that take place. My mother died in August 2016 but to be honest we are relieved that she didn't see her beloved go this way. Mum didn't show any signs of dementia passing at 81 years with cancer. I am glad you have family support unfortunately my sister and I do not get along having had a big falling out in the summer but despite this we do our best for dad but I do miss the support we gave each other. Sending hugs to you and wanting to say what a wonderful caring person you are I hope I will be as brave.
 

White Rose

Registered User
Nov 4, 2018
679
0
Bad day with Nick yesterday. He was being stubborn. Refusing to sit down on the toilet at my daughters house,(doesn't matter at my house I have given up!.) Going to the bathroom when we are out is his favorite activity) so we locked him out of access to her bathroom.

I was irritated and very very fed up with him. He had a long walk with his carer in the morning but put on his dirty shoes again afterwards and was bored and discontent. He would not take off his hat, gloves and coat and dirty boots!! He had had a beautiful 2 hour walk with his carer! I wanted him to just chill for a bit and not have to be cared for. And then I had to clean up the mess on the floor, which his dirty boots tracked thru my clean house which is how I had used my morning while he was out having a walk!

Then during the night on Tuesday/Wednesday, he got up and had some kind of loose bowel movement, there was excrement on the floor and the rug, and foul toilet bowl for me to greet at the start of my day today. I was very irritated and feed up with him, before I even started today. I have cleaned it up and will give him a bath soon enough. What is my part in all this? Not accepting his progressive disease, reverting to my old protection mode of anger rather than accepting where he is now. It keeps me from being vulnerable and sad about our lives and current situation.

I am feeling strange again about the lack of love and real companionship. It is strange to live with someone and to feel so little for them. To only see them as a burden and not giving to me in my life. How can I see Nick as a person again….it helps in the morning when I give him his kiss and hug? There is that moment when we are connected and in that moment I do remember I loved him dearly, and I do it every morning in an effort to stay connected to him. Although, I do the action it does not sustain me throughout the day. When I hold him in my arms I do feel love for him and I do remember what a good person he was and what a gentle man he is still most of the time. I must practice HALT…Hungry, Angry, Lonely , Tired. And just stop!!! Remembering nothing really matters, it does not matter if I am on time somewhere. It does not really matter if there is excrement on the floor, and rug or on him for that matter. It all washes it can all be cleaned up.

The real truth, I have cared for Nick at home for so long, because I fear a change in my lifestyle, that is why he is at home. I fear I would be impoverished if he were to go into an expensive institution. I fear financial insecurity and fear of an "even lesser" lifestyle. I do not know this to be true, perhaps my worst fears would never be realized.

But I must be grateful for all that I have, enough money and support today. Two local children who are loving and supportive.His family in the Uk who do their best to stay connected and give some financial support for one day of daycare a week. Which all helps me to keep Nicky at home. And carers on contract so I can get out of the house and not be isolated.

I am going to get us dressed and out into the world. I will buy and advent wreath this year rather than making one. We will do our best to start this day again and find those moments of joy and gratefulness. What choice do we have.....
You echo my feelings PalSal, I give my partner a kiss at bedtime as I try to remind myself what he meant to me and what we were to each other. On rare occasions when he's having a better Alzheimer's day he might give me a hug and I briefly see the person he was. Today he's been a lot more 'with it' and it makes it so much less stressful but on the bad Alzheimer's days I just wonder what on earth we did to deserve this and I feel so resentful and then can't feel any love for him at all. I worry that as the disease progresses there will be less and less feelings of love, especially when he's so needy and self centred, it just makes me feel like what I am which is an unpaid drudge!! Ah well, today was a good day, I hope you still get some of those as well.
 

margherita

Registered User
May 30, 2017
3,280
0
Italy, Milan and Acqui Terme
The real truth, I have cared for Nick at home for so long, because I fear a change in my lifestyle, that is why he is at home. I fear I would be impoverished if he were to go into an expensive institution. I fear financial insecurity and fear of an "even lesser" lifestyle.
You may have accepted the mixed role of wife and carer for lots of different reasons. It doesn't matter the "why", but the " how". You have given Nick the best possible life and he is lucky to have you by him.
It is difficult to remember the good days (and feelings) of the past when they are obscured and outnumbered by the current bad days with their load of anger, tiredness and worry.
You are brave and honest.
Can I send you a big
((((hug)))) ?
 

Dimpsy

Registered User
Sep 2, 2019
1,906
0
HALT - Hungry - Angry - Lonely - Tired

In words how us carers feel a lot of the time, but can I suggest a slight change to the H for halt to H for Human as in we're only human not superhuman.

Mind you, reading your post you sound superhuman to me @PalSal, with all that you cope with; we all go off our loved pwd, (regularly!), which I have decided is a saving grace, because that stops us being martyrs, a horrible thing to be. Think horrible thoughts, we all do, we're only human, and then they vanish into thin air and it's back to real life, love and coping.
 

leslyz

Registered User
Oct 24, 2015
281
0
Bad day with Nick yesterday. He was being stubborn. Refusing to sit down on the toilet at my daughters house,(doesn't matter at my house I have given up!.) Going to the bathroom when we are out is his favorite activity) so we locked him out of access to her bathroom.

I was irritated and very very fed up with him. He had a long walk with his carer in the morning but put on his dirty shoes again afterwards and was bored and discontent. He would not take off his hat, gloves and coat and dirty boots!! He had had a beautiful 2 hour walk with his carer! I wanted him to just chill for a bit and not have to be cared for. And then I had to clean up the mess on the floor, which his dirty boots tracked thru my clean house which is how I had used my morning while he was out having a walk!

Then during the night on Tuesday/Wednesday, he got up and had some kind of loose bowel movement, there was excrement on the floor and the rug, and foul toilet bowl for me to greet at the start of my day today. I was very irritated and feed up with him, before I even started today. I have cleaned it up and will give him a bath soon enough. What is my part in all this? Not accepting his progressive disease, reverting to my old protection mode of anger rather than accepting where he is now. It keeps me from being vulnerable and sad about our lives and current situation.

I am feeling strange again about the lack of love and real companionship. It is strange to live with someone and to feel so little for them. To only see them as a burden and not giving to me in my life. How can I see Nick as a person again….it helps in the morning when I give him his kiss and hug? There is that moment when we are connected and in that moment I do remember I loved him dearly, and I do it every morning in an effort to stay connected to him. Although, I do the action it does not sustain me throughout the day. When I hold him in my arms I do feel love for him and I do remember what a good person he was and what a gentle man he is still most of the time. I must practice HALT…Hungry, Angry, Lonely , Tired. And just stop!!! Remembering nothing really matters, it does not matter if I am on time somewhere. It does not really matter if there is excrement on the floor, and rug or on him for that matter. It all washes it can all be cleaned up.

The real truth, I have cared for Nick at home for so long, because I fear a change in my lifestyle, that is why he is at home. I fear I would be impoverished if he were to go into an expensive institution. I fear financial insecurity and fear of an "even lesser" lifestyle. I do not know this to be true, perhaps my worst fears would never be realized.

But I must be grateful for all that I have, enough money and support today. Two local children who are loving and supportive.His family in the Uk who do their best to stay connected and give some financial support for one day of daycare a week. Which all helps me to keep Nicky at home. And carers on contract so I can get out of the house and not be isolated.

I am going to get us dressed and out into the world. I will buy and advent wreath this year rather than making one. We will do our best to start this day again and find those moments of joy and gratefulness. What choice do we have.....

My god! You have expressed such emotions in this deeply moving post, I feel your anger and rage (understandable), the pain, the pity and despair and sorrow but underneath there is love too and such strength. I don't know how you do it. Look after you in the midst of all this caring.
 

pevensey

Registered User
Feb 14, 2012
286
0
South East Coast.
My god! You have expressed such emotions in this deeply moving post, I feel your anger and rage (understandable), the pain, the pity and despair and sorrow but underneath there is love too and such strength. I don't know how you do it. Look after you in the midst of all this caring.
That was such a beautiful but sad post@leslyz , you sound like you are a wonderful loving caring person, but I'm quite jealous of you because I wish I could be like you, I've coped well up to now but cant do it anymore I do try. I would love to have your strength. But be good to yourself at the same time.
 

Lirene

Registered User
Sep 15, 2019
243
0
My husband sat there yesterday in hospital so good looking. Shaved, showered, hair washed and combed so gorgeous but heartbreakingly so utterly confused. I will love him for ever but wish the Lord would take him out of this torment. My prayers will be answered some day xx
 

mariner223

Registered User
May 30, 2017
5
0
dorset
Bad day with Nick yesterday. He was being stubborn. Refusing to sit down on the toilet at my daughters house,(doesn't matter at my house I have given up!.) Going to the bathroom when we are out is his favorite activity) so we locked him out of access to her bathroom.

I was irritated and very very fed up with him. He had a long walk with his carer in the morning but put on his dirty shoes again afterwards and was bored and discontent. He would not take off his hat, gloves and coat and dirty boots!! He had had a beautiful 2 hour walk with his carer! I wanted him to just chill for a bit and not have to be cared for. And then I had to clean up the mess on the floor, which his dirty boots tracked thru my clean house which is how I had used my morning while he was out having a walk!

Then during the night on Tuesday/Wednesday, he got up and had some kind of loose bowel movement, there was excrement on the floor and the rug, and foul toilet bowl for me to greet at the start of my day today. I was very irritated and feed up with him, before I even started today. I have cleaned it up and will give him a bath soon enough. What is my part in all this? Not accepting his progressive disease, reverting to my old protection mode of anger rather than accepting where he is now. It keeps me from being vulnerable and sad about our lives and current situation.

I am feeling strange again about the lack of love and real companionship. It is strange to live with someone and to feel so little for them. To only see them as a burden and not giving to me in my life. How can I see Nick as a person again….it helps in the morning when I give him his kiss and hug? There is that moment when we are connected and in that moment I do remember I loved him dearly, and I do it every morning in an effort to stay connected to him. Although, I do the action it does not sustain me throughout the day. When I hold him in my arms I do feel love for him and I do remember what a good person he was and what a gentle man he is still most of the time. I must practice HALT…Hungry, Angry, Lonely , Tired. And just stop!!! Remembering nothing really matters, it does not matter if I am on time somewhere. It does not really matter if there is excrement on the floor, and rug or on him for that matter. It all washes it can all be cleaned up.

The real truth, I have cared for Nick at home for so long, because I fear a change in my lifestyle, that is why he is at home. I fear I would be impoverished if he were to go into an expensive institution. I fear financial insecurity and fear of an "even lesser" lifestyle. I do not know this to be true, perhaps my worst fears would never be realized.

But I must be grateful for all that I have, enough money and support today. Two local children who are loving and supportive.His family in the Uk who do their best to stay connected and give some financial support for one day of daycare a week. Which all helps me to keep Nicky at home. And carers on contract so I can get out of the house and not be isolated.

I am going to get us dressed and out into the world. I will buy and advent wreath this year rather than making one. We will do our best to start this day again and find those moments of joy and gratefulness. What choice do we have.....
 

mariner223

Registered User
May 30, 2017
5
0
dorset
Bad day with Nick yesterday. He was being stubborn. Refusing to sit down on the toilet at my daughters house,(doesn't matter at my house I have given up!.) Going to the bathroom when we are out is his favorite activity) so we locked him out of access to her bathroom.

I was irritated and very very fed up with him. He had a long walk with his carer in the morning but put on his dirty shoes again afterwards and was bored and discontent. He would not take off his hat, gloves and coat and dirty boots!! He had had a beautiful 2 hour walk with his carer! I wanted him to just chill for a bit and not have to be cared for. And then I had to clean up the mess on the floor, which his dirty boots tracked thru my clean house which is how I had used my morning while he was out having a walk!

Then during the night on Tuesday/Wednesday, he got up and had some kind of loose bowel movement, there was excrement on the floor and the rug, and foul toilet bowl for me to greet at the start of my day today. I was very irritated and feed up with him, before I even started today. I have cleaned it up and will give him a bath soon enough. What is my part in all this? Not accepting his progressive disease, reverting to my old protection mode of anger rather than accepting where he is now. It keeps me from being vulnerable and sad about our lives and current situation.

I am feeling strange again about the lack of love and real companionship. It is strange to live with someone and to feel so little for them. To only see them as a burden and not giving to me in my life. How can I see Nick as a person again….it helps in the morning when I give him his kiss and hug? There is that moment when we are connected and in that moment I do remember I loved him dearly, and I do it every morning in an effort to stay connected to him. Although, I do the action it does not sustain me throughout the day. When I hold him in my arms I do feel love for him and I do remember what a good person he was and what a gentle man he is still most of the time. I must practice HALT…Hungry, Angry, Lonely , Tired. And just stop!!! Remembering nothing really matters, it does not matter if I am on time somewhere. It does not really matter if there is excrement on the floor, and rug or on him for that matter. It all washes it can all be cleaned up.

The real truth, I have cared for Nick at home for so long, because I fear a change in my lifestyle, that is why he is at home. I fear I would be impoverished if he were to go into an expensive institution. I fear financial insecurity and fear of an "even lesser" lifestyle. I do not know this to be true, perhaps my worst fears would never be realized.

But I must be grateful for all that I have, enough money and support today. Two local children who are loving and supportive.His family in the Uk who do their best to stay connected and give some financial support for one day of daycare a week. Which all helps me to keep Nicky at home. And carers on contract so I can get out of the house and not be isolated.

I am going to get us dressed and out into the world. I will buy and advent wreath this year rather than making one. We will do our best to start this day again and find those moments of joy and gratefulness. What choice do we have.....

You are so lucky to have the support of your family and carers, we have no immediate family and my wife refuses to have carers in the house, I agree about the change in situation where the love has gone out of a relationship due to the changes in ones partner, I try to keep a tiny portion of that love going but it does become increasingly difficult, I find that looking back over the good years does help
 

PalSal

Registered User
Dec 4, 2011
972
0
Pratteln Switzerland
You may have accepted the mixed role of wife and carer for lots of different reasons. It doesn't matter the "why", but the " how". You have given Nick the best possible life and he is lucky to have you by him.
It is difficult to remember the good days (and feelings) of the past when they are obscured and outnumbered by the current bad days with their load of anger, tiredness and worry.
You are brave and honest.
Can I send you a big
((((hug)))) ?
Hi dear Margherita, . Thank you. The day yesterday was quite good....I think the isolation is what gets to me. I must push now to get him out, it is more difficult than for both of us. And the medication I am on now, which keeps me in remission from my leukemia makes me unbelievably tired. I can no longer do all the things I used to do. I hope you are holding it all together in Italy. You still at home with you OH?
 

leslyz

Registered User
Oct 24, 2015
281
0
That was such a beautiful but sad post@leslyz , you sound like you are a wonderful loving caring person, but I'm quite jealous of you because I wish I could be like you, I've coped well up to now but cant do it anymore I do try. I would love to have your strength. But be good to yourself at the same time.
I think that was meant for @PalSal
 

rhubarbtree

Registered User
Jan 7, 2015
501
0
North West
Such an eloquent post PalSal. You have written everything that goes around in my head all day. Trying to decide home or care home. I too fear an economic lifestyle change if I start paying £1000 per week. My OH is physically fit and might well have many years ahead despite having Alzheimer's for years. I did promise my children that I would sit down and work out the finances last week but have not got around to it yet. On the other hand, I do not think he will last long in care bearing in mind all the decisions I make for him regarding food, drink, hygiene. So the procrastination and making the best of it goes on and on.

We too are at the putting outside shoes, coat, gloves on all day. The other day I hid his coat in a kitchen cupboard and could not remember where I had put it when we were about to go out. Also the stubborness. Undressing for bed, when I am tired, is awful. In fact it did not happen last night - he slept in his clothes. Some days I suggest a shower around the sundowning/wandering time and get him into pyjamas early. I have the same toilet problem at my son's house, frequent visits with me hovering with wet wipes. Do not visit anyone else now.

But all the time I am looking to the future, the groups at U3A I will join, the courses I will take, the places I will explore, even the books I will read (concentration gone). Then I wonder if I will have the courage after these years of isolation.
 

White Rose

Registered User
Nov 4, 2018
679
0
Such an eloquent post PalSal. You have written everything that goes around in my head all day. Trying to decide home or care home. I too fear an economic lifestyle change if I start paying £1000 per week. My OH is physically fit and might well have many years ahead despite having Alzheimer's for years. I did promise my children that I would sit down and work out the finances last week but have not got around to it yet. On the other hand, I do not think he will last long in care bearing in mind all the decisions I make for him regarding food, drink, hygiene. So the procrastination and making the best of it goes on and on.

We too are at the putting outside shoes, coat, gloves on all day. The other day I hid his coat in a kitchen cupboard and could not remember where I had put it when we were about to go out. Also the stubborness. Undressing for bed, when I am tired, is awful. In fact it did not happen last night - he slept in his clothes. Some days I suggest a shower around the sundowning/wandering time and get him into pyjamas early. I have the same toilet problem at my son's house, frequent visits with me hovering with wet wipes. Do not visit anyone else now.

But all the time I am looking to the future, the groups at U3A I will join, the courses I will take, the places I will explore, even the books I will read (concentration gone). Then I wonder if I will have the courage after these years of isolation.
Hi rhubarbtree - I hope you find the courage to do all the things you want to do. It's a great idea to plan ahead and have things to look forward to, perhaps that's what will keep us going. I'm looking forward to all the places I can travel to, especially New Zealand.
 

PalSal

Registered User
Dec 4, 2011
972
0
Pratteln Switzerland
You are so lucky to have the support of your family and carers, we have no immediate family and my wife refuses to have carers in the house, I agree about the change in situation where the love has gone out of a relationship due to the changes in ones partner, I try to keep a tiny portion of that love going but it does become increasingly difficult, I find that looking back over the good years does help
Hi Mariner... It took years to create a network of support (and bless them the early days with my hubby's family were difficult...as he was a great hider and pretender) But 17 years, is a long time. So I have managed to create a "team Nick" . But we were very young. I had no choice but to demand that we have help (he was 49 and I was 48, although in the early years , he did not need help as he does now. ) The early years were about executive thinking....He continued to drive for about 11 years....that was a game changer when he could no longer drive.