I posted this on my blog late Monday night.
I’m also posting something I shared today at the end.
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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.
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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.
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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.
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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.
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From Thursday’s blog
Whirlwind
Tuesday around lunch time, the hospice nurse and social worker showed up at my house.
I had no clue they were coming.
They told me that there was a bed available that day and we needed to jump on it or it may not be available the following day.
I didn’t have much time to think, but we assured that this would be the best temporary solution for controlling Chad’s seizures and other medications.
Around 4:30, while we were waiting for transport to arrive, Chad had a bad fall. He was in serious pain and very upset. He fell on the his right side against the bath tub, and he fell hard. I was certain he had broken a rib or two.
When the EMS team arrived to move him to the hospice home, they decided it might be best to swing my the ER first to make sure he didn’t have any internal bleeding. They thought they felt some firmness/bleeding in his abdomen.
Thankfully, after a quick trip to the hospital, it was determined he was just badly bruised. But he was okay.
He was not happy that he was at the ER, but couldn’t remember falling, either. He knew it hurt to take a deep breath and to move, so I think he realized that the fall was a pretty nasty one.
At 8:15, transport arrived to pick him up and we were at the hospice home around 8:30.
The move went well and he was comfortable.
He is at the Hospice Home of Wake County, off Trinity in Raleigh.
Wednesday morning went well; he was alert and not in pain — which was good.
He had a few visitors later in the day and seemed happy to see them.
Later Tuesday night, he became quite agitated.
He is furious with me.
He doesn’t understand why he’s there…even though I (and the nursing staff and other other family members) have repeatedly told him it’s for symptom management. We need to get his seizure activity under control.
He said some really hurtful things to me.
And he requested no visitors, except for his parents and our daughters.
I know many people want to visit, but I have alerted the front desk to ask his permission when visitors sign in. He may or may not want to see you. Don’t take it personally.
We are tapering him off the steroids to see how much seizure activity we’re truly dealing with. He has been decreased from 12mg to about 4mg now. I would imagine the taper will take a few more days to complete. Then, we just wait and see what happens once the medication is out of his system. It will give us a better idea of how to best manage the seizures when the steroids are not masking any swelling or growth.
He does not want me there. At all.
He is lashing out at me verbally & physically, which I hear is “normal.” Still stinks, though.
He has been giving me the silent treatment most of the time and will only have a conversation with me if one of the staff members is in the room.
After a very emotional evening with him last night, I decided to leave this afternoon.
I’m exhausted, even though I’ve slept well the last two nights.
The emotional burden is heavy.
The staff is taking excellent care of him and I have no concerns about that, at all.
School starts next week for Carys and I really need to get her on a routine.
I will be at home with the girls in the evenings and will spend the day with Chad. Every day.
You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 
Emily Placido
I have no words Skye. My eyes are welling up with tears, as if I can feel your pain and anhuish. My prayers go out to you, Chad and the girls. For all it’s worht, I believe that you are doing the right thing. Sometimes doing the right thing hurts. God Bless you!
Sharon
Oh, Skye. My heart hurts for you. You are doing the right thing, but the emotional pain and anguish of it all must be so overwhelming. I will be praying for you.
G-J
Oh, Skye, my heart goes out to you and your family. I can only imagine how difficult this is for all of you. Despite what you feel, you are NOT letting down your husband, betraying your marriage vows, failing your husband, or letting others down. You have obviously given your decision a lot of thought, and remember you haven’t made the decision alone; hospice has been in on the decision making process with you and would tell you if they thought you were doing the wrong thing. You ARE considering your husband in this as well as your continuing life with your daughters.
Skye, you are an incredibly brave woman, although you may not think so right now. You are an incredible role model for all caregivers, doing what is best and right despite the difficulty. Of course this is hard for all of you, but if your husband was able to see this situation as his old self would have seen it, you know he would be supporting you. Your daughters will not understand this today, or for many years, but will always admire the courage it took for you and your husband to get through this as well as you have.
Jo
Joining the many others in praying for you and your family. Although it doesn’t feel like it, you are doing all the right things.
Denise
Hi Skye–It’s the fall, to mean, that signals he needs the care where he is now. And, as his wife, it’s important that you make the difficult decisions to ensure he has what he needs. You’ve done that.
Not that any of this is easy. Or, fair.
You’re doing all the right things. Most important, you arrive to see him every day in love. Because you bring the love, you and he are in a good place.
Keep us posted. We’re all thinking of you!
Bette
Skye,
I so agree with all that has been said here. You are thinking through all the many decisions and making good choices for everyone involved. I admire your perseverance. You are all in my prayers.
Unit Known as Shandi
Skye,
You expressed very eloquently all the thoughts that have been in my heart this past week. I, too, am getting ready to move my mom to an adult family home on Sept. 1st. We are giving a try for a month, but I am anticipating that it will be her permanent home. I, too, have been struggling with the thought of me not being there to kiss her goodnight, someone else handling her personal care needs, trusting someone else to know how to handle her transfers without a fall.
As close as I am to my mom, I can only imagine how much harder it would be if it were my husband.
I am telling myself (and Mom, and the adult family home) that I am still my mom’s primary caregiver. She is still MY responsibility. The difference is, I now have a whole team behind me to help give her the best possible care that I can. If this works well, I am looking forward to having more energy, now freed from the exhausting and mundane chores of just getting her through her day, to spend quality time with her. Those are the positives. However, it doesn’t make it any easier.
My thoughts and prayers are with you as you and your family go through this transition.
kay balsley
Skye I remember when I was 10 watching my Dad suffer with cancer at home it is something I would not wish any child would have to witness. I think you are making the best decision for everyone I pray that God gives you strength as you go through this with your husband.
Donna Ryan
I totally agree with everyone here….
Shandis post hit a similar note to me as I had to also make the heart wrenching decision to put my aunt in a facility during her final stages of leukemia versus dying in my home.
I know you are going through something FAR harder having your husband sick…believe me…there is no comparison here in terms of emotion
however in my case, it was the correct thing….I spent every single day with her, even nights and we enjoyed quality time with family and friends and other patients loved ones versus my being exhausted and overwhelmed…caring for her as well as dealing with my emotions…I had hands to help me.
You are an excellent wife. I back up your decision 100%…You and your children one day will have to continue living in that home….I think in your case this is the best solution…and you can somehow for a little while each night put your head on the pillow and rest knowing he is being cared for ..
god bless you…..Im thinking of you every day!!
Rich
Skye,
Sorry to hear about your situation. Our prayers are with you and your family. The folks at hospice are great, and they will be a tremendous help and comfort to you.