I FINALLY have my phone and internet connections back, after 5 days. We had a terrible storm last Wednesday that fried my internet phone. And my garage door opener. Being without them was a nuisance and I am so glad everything is in working order again!
Carys & I got away for the weekend – to Camp Mary Atkinson here in JoCo. It was a weekend for moms and daughters only – no boys allowed!
Although it was HOT!, we had a good time and I so appreciated the opportunity to hang out with other Scout moms (and their spunky girls) from our troop. We made a lot of memories and I feel so blessed to have each of these ladies in my life! Carys & I needed this time together; it was definitely nice to just hang out with her and watch her play with her Scout friends.
We are still trying to catch up on sleep, and Carys is enjoying Girl Scout day camp at CMA this week, too.
Here are some pictures from our weekend.
We made tie-dye t-shirts, had a mommy & me yoga session, facials, went swimming & made s’mores by the campfire (with tons of little bug friends – yuck!). We really did have fun, although I am still trying to catch up on sleep.
While we were away, my mom held down the fort at the Lanford homestead.
She & Cailyn had some good bonding time, too!
Chad didn’t have a great weekend, and I felt terrible that my mom was there to handle it by herself.
Chad fell a lot over the weekend and has so many bruises — it makes me wince to see the black & blue marks all over his right side.
When we were in a Beaufort a few weeks ago, he had his first fall. When that happened, he noticed that his right hand felt tingly. Gradually, over the following week or two, he lost all motor control in his right arm and hand.
And now he states that his left hand in starting to feel tingly. Not a good thing, for sure.
His best time of day seems to be first thing in the morning, before he gets any of his medications. He is confused and doesn’t string together sentences very well, but he’s a little more like himself in the mornings. When his headache creeps in and he receives his first dose of medications, things seem to go downhill for the rest of the day.
I asked the hospice nurse about this, fearing that we are giving him too much medication at this point — but she assures me that he needs it. And the falling is not from the medication; the steroids strip away his thigh muscles and he just has a hard time with his balance. He HAS to have the steroids, even though they have some wicked side effects (agitation, muscle wasting, hunger, etc.). If he didn’t have them, he would likely be having seizures (from the swelling and tumor growth) and more intense pain.
We have increased one medication to help with the agitation and aggressiveness; it seems to help.
He gets very upset when I try to help him do routine things; he wants to be independent. He just doesn’t understand that he can’t be at this point. He actually took a swing at me late last week, which is when we decided to increase the meds. Our goal is to make him safe and comfortable, but everyone else (especially my girls) need to be safe, too.
With that in mind, it was recommended that I not leave him alone for any length of time — and that I need to have someone here with me all the time. When he falls, it is increasingly more difficult to get him up. It’s like dead weight. And he can’t always help right himself; sometimes he can. There is a schedule where our family members are signing up for shifts and there is always someone here. It’s nice to have help; and I’m ready to accept all that I can get.
He actually used the wheelchair for a bit Sunday, which was a sigh of relief for me. I know he didn’t want to use it, but I think he scared himself this weekend by falling so much. He even told my mom to go get help at one point, which is a sign to me that he knows he needs help sometimes.
He sleeps a lot during the day and is sleeping better at night, which is good for me.
When the hospice nurse was here yesterday (Monday), she told me that she is fairly certain Chad’s falls are seizures. Due to the amount of medication he is on, they cannot fully manifest themselves – but they are there.
She also told me that I need to prepare myself for what’s coming — a move to the Hospice Home. At some point, I am not going to be able to keep him at home. I have so many mixed emotions about this, but that’s for another post.
He had a pretty good day yesterday; he didn’t fall at all. But he was in bed for a majority of the day. His appetite is waning and his is just exhausted.
He is not up for visitors right now and probably won’t be from this point forward; please understand.
If you’d like to visit me or the girls, that’s fine. Just shoot me an email or call – and please understand if we’re not up to it or if we have to cancel at the last minute.
Thank you, as always, for your support.