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.....
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.....