I know there is hope.
There is always HOPE.
Thank you for all of your kind comments yesterday.
It was a difficult weekend and today wasn’t a lot better.
I did want you to know that I was comforted reading your comments and felt kind of silly for posting that I wasn’t very hopeful at this point.
Sometimes, it’s just difficult to see. But it’s always there.
I know that.
Thanks for helping me remember.
I have started discussions with our hospice team to enroll Chad in full-time care at an outside facility.
I have been in turmoil about this decision, but knew that our situation would probably come to this.
This is, by far, the most difficult decision I’ve ever had to make.
There are so many things to consider.
And in case you’re curious, here is my thought process.
First, I am trying my best to preserve a positive experience for our daughters.
They have seen and heard so much in the last few weeks — and Chad & I never wanted them to experience the harsh reality of end stage brain cancer. We weren’t exactly sure what to expect, but we had discussed it prior to his terminal diagnosis.
He didn’t want them to see him this way.
Also, the girls (and I) need to get used to the idea of Chad not being here.
He is dying. And one morning, day or afternoon, he just won’t be here anymore.
That will be traumatic for them, even though I have prepared them for the coming events as best I can.
A move to an outside facility will help ease their anxiety and fears. Or at least I hope it will.
We will be able to visit and stay with him as long as we’d like, but we will also learn to adjust to a life without him physically here at home.
As the disease progresses, he will become increasingly agitated. I’ve seen it first-hand in the last couple of weeks.
He has said and done things recently that are clearly NOT him.
And I do not want our girls to remember that part.
I do not want them to see that part.
I want to shield them from the tough stuff as much as possible.
Chad is having a lot of seizure activity; most of which are manifested as falls.
He trembles a lot in bed while sleeping. Seizure.
He stares into space, almost catatonic. Seizure.
He is taking an extraordinary amount of anticonvulsant medication. And still, the seizures break through.
We are getting to the point where traditional forms of his medications just aren’t cutting it.
Today, we noticed his left leg is weaker than it has been. The toes on his left foot are starting to curl under, just like his right.
He has such a hard time trying to walk – but he tries anyway. And he falls. A lot.
He has been using the wheelchair more in the last few days and doesn’t resist my urges to bring it to him.
I don’t want him to hurt himself — or someone else who may try to help him up.
Eventually, and I use that term very loosely because I know it’s coming sooner than later, he will not be able to swallow.
When this happens, he will be unable to take his medications. He will need an IV. He can, technically, have this at home.
But, again, I do not want our children to have memories of their father receiving all nourishment and medication through an IV.
His sporadic incontinence is also becoming more regular. Another thing I never wanted the girls to see or remember.
There are things that also make me feel guilty about a move to an outside facility.
I do not ever want my kids to think I sent Chad away or that I didn’t love him anymore. The girls take things well, but I often wonder how much they internalize. Will they feel that daddy is being punished for being sick? Will they think it’s their fault that he had to go away because they were being too loud or their toy-strewn bedroom floors made him fall? I’ve assured them that none of this is their fault — but I also know how kids think. They will think it is their fault, at some point.
In the very beginning of this journey, nearly three years ago, Chad told me that he would not want to die at home. He wanted to keep the girls and I away from the difficulties as much as possible. At that time, I was shocked. He did change his mind, after all of hospital admissions in 2009. He wanted to be home, in a comfortable environment — and away from the sterile and impersonal nature of a nursing home hospital.
I struggle with the thought of what life will like without him here.
I feel terribly guilty already about the thought of him anywhere but here. He belongs here. Our life is here.
I cannot imagine the guilt I will feel every single day when I know he is not able to experience life with me, with us, anymore. I will get to go to school functions and be the parent my kids deserve; while he will be immobile in a hospital bed.
It’s just not fair that my life will continue to be normal.
I also have the overwhelming sense that I am failing my husband.
That I am betraying my marriage vows.
That I am letting him down.
That I am letting others down.
I do not want people to think I gave up or that I wasn’t strong enough to handle it.
I am trying to do what is best for my family, for my children. I am trying to keep everyone safe and it’s incredibly hard to juggle the emotions of a situation like this.
No one else is here daily to witness the decline and sudden bursts of energy that leave me confused, upset and bewildered about Chad’s health.
I see it. Every. Single. Day.
I live it. Every. Single. Day.
I worry about the financial strain it will put on us to move him to full-time care.
I worry that he will be angry with me.
I worry that he will resent me and I will bear that burden for the rest of my life.
I am consumed with the thought that I am being selfish instead of selfless.
It all comes down to a few pivotal points.
– This decision is about safety. For everyone. Mainly Chad, but also the girls & I.
– This decision is out of love. I love Chad and I want the best for him. I’m certain I am not able to adequately give him the best possible care.
– This decision is about the emotional well being of our children, who should never have to witness this kind of cruel health decline.
As stated previously, I’m not sure when this transition will take place. I should know more later this week.
I’ve prepared Chad, though I’m not sure he remembers talking to me about it.
He was quite agitated that I brought it up; but seemed to understand when I laid out my thought process for him. He knows he
is declining quickly and I think he knows this is the best decision we can make at this time.
I will keep you posted.
Thank you, as always, for your support for our family.