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 was 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 by 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.

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7 Responses to Whirlwind

  1. Pingback: Caregiving.com: Helping You Help Family and Friends

  2. Lisaloves31 says:

    Stay strong my dear and just remember that the wonderful man you married and have a beautiful family with is still in there and he loves you and your girls tremendously. One of my favorite scriptures is Isaiah 54:5 “For your Maker is your husband…” and then in vs 8 it goes on to say “I will have compassion on you”. Remember Skye, the Lord is your strength, your song and your comfort. He is with you always even during this most difficult time. He will send you an “Aaron & Hur” to hold up your arms when you feel your strength is drifting away. Put your confidence and trust in God alone and He will see you through.
    Much Love & Prayer! Lisa A.

  3. sip says:

    skye, i just can't imagine what it must be like. not just for you and the girls, but also for him. i can't fathom how he must feel inside, being confronted with his own mortality. brain diseases are so cruel. you have so many beautiful memories that you have made over the years with chad and i know you will rely on them to get you through the hard days ahead. hang in there, you are doing the best that you can do. 😉 you are so loved by so many people, skye.

  4. Rose says:

    Skye, you alone know the struggles, joy and heartaches that no one else can even
    comprehend. We all love you and Chad, we miss the Chad we knew, and realize
    he is frustrated and will probably not remember tomorrow what is said today. However,
    that doesn't help today, does it?? David & I haven't been there physically as much
    as we should, but, you both have been in our hearts and will continue to be forever.

  5. Shauna says:

    I'm so sorry that you are going through this very difficult time. To quote a wise man “this sucks”. I don't really know the right words of comfort to offer you, you know it's not really him, and you've got the right “mindset” about it. But I'm sure your heart still feels the sting of his words. I feel so blessed to know you, and your beautiful girls. We will continue to hold your family in prayer, and please know that I am always around if you need anything-even if it's just to sit with with you and be still. (Or sit with you and scream!) Love and hugs- Shauna

  6. Amy says:

    Stay strong Skye, you are doing what needs to be done. I wish I had words of encouragement, but what can I say that you don't already know. We send prayers, love & strength from OK.

  7. Camillebwatson says:

    Skye, I am so sorry your family is going through this termoil, however I see what a strong amazing woman you are… Have faith in God, and our Lord Jesus Christ, for he will never give you more than you can handle, even when it feels as if he has. He is your strength and comfort during this time. He loves you so very much! I wish I could make this go away and say just the right thing to take away your pain, Chad's and the girls. Please know you are all loved, thought about, prayed on, and if there is anything you need we are here! Love you all!

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