Mom in April

It's been a while since I posted anything and I feel kind of bad. Hopefully this post makes up for it a bit!

If you're counting, we're getting close to the three-month mark since the docs said my mom had two weeks to two months. It's been an interesting month and we still don't know what exactly is going on with mom. Our family has discussed the option of getting scans done - sometimes mom agrees, then she refuses. We would have to actually remove her from hospice care in order to have any diagnostics done, then place her back in hospice afterward. It's a lot of hassle with insurance. I don't know if Mom would agree when it came right down to it. But she might. It would be nice to know what's going on, exactly.

At the beginning of the month, my sister Nicole and her family came out to visit for their Spring break. The grandkids loved seeing her; Simone and Madi managed to take Mom for a couple of walks outside in her wheelchair. Nicole said that Mom was still pretty random in conversations and she slept a lot. Still, Mom was very glad that Nicole was here... and Wendy and I spent some much-needed time with our families. Wendy took her kids to California to see their aunts and I took my kids down with me and KP to Zion's National Park.

The next week was my kid's Spring break and we spent much of the time here with Mom. She also came over to our house so we could get some of our Spring cleaning and gardening done.

The next Sunday was Easter and everyone came over for dinner and the Easter Egg hunt.
It was so much fun with my college-age nieces and nephew here! Mom came outside to enjoy the weather and watch the egg hunt.  Dad was busy giving all the grandkids "special" eggs that the older kids especially loved! ($$)  He doesn't make them look for them though, which doesn't seem fair!

That next week after Easter was kind of strange.  First off, I noticed that Mom was much more coherent - inexplicably coherent for how random she had been just the week before. She was having normal conversations with me and the kids.  She was firmly in the moment and continues to be that way with just a few random thoughts thrown in.

Then, on Wednesday of that week, Mom went out to lunch with Aunt Rallet and Uncle Marion. When they returned to the house, they told me that Mom didn't remember anyone coming to visit or call her in the last few months! She didn't remember Nicole coming the week before. She was actually in tears saying that she had been feeling terrible that no one cared about her enough to come see or call her. Poor thing!! I showed her the little book by the front door that everyone writes in when they come to see her and she was so surprised!! She didn't remember ANYONE that came. In fact, she still says to me, "Are you here to visit me today? That's so nice! I saw Wendy today too!"  (We both come over almost every day.)

Anyway, I think that's getting a little better because she remembers the Albanian Ambassador coming to meet her and she remembers hearing little Lily Olliverson coming over to play her violin so beautifully. Just don't feel bad if she doesnt' remember a phone call or a visit...but be sure to write in the little book by the door if you come.

Speaking of Lilly, my mom seems to respond really well to live music; it cheers her up, I guess. She actually likes it when Alexander and Andrew come to do their violin or cello practice at her house.  If you want to come over and play something for her, please do. There's no piano at my parents' but if you have anything else, she'd really enjoy it. Also, she loves to sing so if you want to come sing for her, she would probably enjoy that as well.



Now for this week: we've hit a bit of a rough patch.  She was in the car with me last week when I picked up Jack from preschool and she said she felt like she was going into a tunnel-dark place. Scary!! I got her home pretty quick and the hospice nurse came over. She said her blood pressure was quite low but she didn't know why. Since then, she's been pretty lethargic and sleepy.  Dad's been giving her Gatorade this weekend in case her electrolytes are low.  Also the pain in her arm has been quite bad today. Dad must have given her some morphine this morning because she's been sleeping for quite a while.

Mom's a trooper and she's not about to give up. She made a comment when she came home from lunch with Aunt Rallet (after Aunt Rallet had again explained about Mom's cellulitis and about being in the hospital, etc.) She said, "Wow, for how bad I was in the hospital, it's a wonder I've made it this long! There must be something I still have to do. I wonder what it is?" I don't know if she'll be able to hold onto that thought for long but that's where she is right now.  Kind of a good question for everyone I guess.

Anyway, I hope you have a good Sunday.  My daughter Kate comes home from her first year of college this week and she didn't think her Grandma would still be here.  It's a gift.

Still Fighting

It's hard to write a blog post where you admit that you've been arguing with your terminally ill mother but there it is. It seems as if she's reached a breaking point with her meds and is trying to refuse them all. We've coaxed, cajoled, tricked, etc. to get her to at least take her pain meds. Tonight she said it was absolutely the last time she was going to take them.

I hope not. Tareq should be home tomorrow and he has a way of sweet-talking her.

Nicole and her family arrived Friday afternoon. Poor Mom feels like she's supposed to be cleaning, straightening up, etc. while they're here...even when we all protest and tell her we can do it. She's trying to arrange meals (which is sort of funny since dad normally does all the cooking) but she loses her train of thought and gets frustrated.

Mom's been having more pain in her arm today...more than the regular pain meds will control. I think she may have to take some morphine. The hospice nurse thinks we'll gradually have to start ramping up the morphine as her pain increases; to the point where, sometime in the future, she may have to have a morphine pump. When that happens, she won't be conscious much.

On the bright side, my sweet sister-in-law, Angela, (Kevin's brother's wife) sent my mom a beautiful pink quilt.  Mom loved it and I couldn't hold back the tears. It was very sweet and we'll treasure it always.

Thanks for your love, support and prayers. Several people brought meals in for my family recently and it lightened my burden. I regularly feel a strength beyond my own and I know it's because of your thoughts and prayers. God bless.

Lots of anxiety

Today is Wednesday, March 28th and tomorrow marks the two month date from the time mom went into the hospital with an attact of cellulitis. The doctors gave her two weeks to two months so she's beat them so far!

For the last few days, Mom's been having quite a bit of anxiety. The hospice nurse says that's normal. A bit of it's her pain meds but the bulk of it is a result of the cancer spreading to her brain.

She's worried about things she hears on the news. Today she told me she was worried because she didn't know what was going on. She said she had this thin little thread that she was trying to hold on to.

It's hard for her to talk on the phone because she doesn't always understand what people are saying and she's afraid she's forgotten something important. She asks where people are all the time and who's in charge. It's different from before because she feels driven to figure things out; to get to the bottom of what's going on. Sometimes she thinks we're part of a conspiracy to get her to do something.

She asked me today what we were doing and I said we could watch some TV, go for a ride in the car, sit outside and soak up some sun, etc. I asked her if that was OK and she kept saying that, no, that was what I believed to be to be true but that it wasn't necessarily reality.

It's very frustrating and takes a lot of creative communication to keep her from sort of freaking out. We also give her some anti-anxiety meds. It takes a toll on those of us taking care of her because she's agitated so much of the time. She's very unsteady on her feet but her anxiety gets her up walking around the house looking for things or people, straightening and cleaning for non-existent guests, trying to find her keys to go somewhere important, trying to find money somewhere for someone, etc.

I think we may try to change what we have on the TV so that we don't watch the news and don't discuss politics (easier said than done in the Butler house, I'm afraid!) Also, we'll have to figure out what to do with the phone. She got into the strangest conversations with a telemarketer-type person the other day because I didn't happen to catch the phone before she did. Maybe it serves them right though! :)

Mom's excited for my sister Nicole to come visit next week. It'll be a good change for mom and Nicole's kids are super excited to see Mom and participate in the Butler family Easter egg hunt! I'm glad Mom will be around to see it this year. It also gives Tareq, Wendy and I a bit of a rest. The ward too. They've been so helpful, I can't even tell you.

Here's to a good week!

Rollercoaster

After Mom's bad days the first part of this week, she's had a few good days lately - kind of up and down like a rollercoaster. She's been up and about with a trip to Target with me and a trip out with her sister, Rallet. Our time at Target was interesting since I had my pouty 4-year-old with me...and my mom kept rolling herself away in her wheelchair. I don't usually bribe my kids for good behavior but the $$ I spent on a toy for Jack-Jack that day was worth every penny!

The last few days she's been feeling better but she's also been pretty fiesty. She says she feels like we are trying to railroad her into doing things she doesn't want to do. It's hard to know when to stop helping - like for instance when I picked out an outfit for her and she said she wanted to save it for a nice occasion (?? It wasn't fancy!) I told her she could wear it anytime she wanted and she told me to stop pressuring her!

She has so many up and down days that it's hard to pull back from helping on the up days. I'll tell her that I can do the dishes and she feels like I'm telling her what to do. Yet on other days, she doesn't feel well enough to even get out of bed for very long. I feel like a jerk for ever letting her do the dishes, even when she insists! Tareq says to not take any of it personally and I don't--I'm just trying to do the right thing for her. It's difficult.

So anyway, I walk in today to sit with Mom while my dad goes to church and, with a big smile, Mom says, "You are going to love meeting your Grandpa Christiansen some day! He'll tell you he is so proud of you and give you a great big bear hug!" And I get a little misty-eyed because she's talking about a grandfather I've never met...and because she's thinking about seeing him again.

And then she tells me all about her outing with her sister where they stopped a missle from exploding at the last minute. Either that was a very exciting afternoon with Aunt Rallet or it was the ending to the movie she watched last night. Either way, it's a rollercoaster everyday!

Stupid cancer

My poor mommy didn't eat anything today. I did get her to sip some Gatorade. She's pretty weak and has been sleeping a lot. Somehow she managed to throw up tonight anyway. She's still up and walking around from time to time.

Hospice delivered a wheelchair today and Dad took Mom out for a spin. The weather is still really nice and she enjoyed it.

Unfortunately, Mom had more pain in her arm so she had to have extra meds today. Her lymph nodes are completely messed up in that arm and that's what usually causes her the most trouble.

She's also getting really disjointed in her thoughts. It's like she's gone from paragraphs to sentences to phrases to fragments in her thinking. Thoughts aren't connected all the time with what's going on; it's like joining a conversation mid-way through and then losing it. My poor brothers and sisters call often to talk with mom and the conversations are often confusing and frustrating.

The hospice nurse came yesterday and said the naps would get longer and longer as Mom lost her energy. We're watching for that. How can she have any energy if she's not eating?
Stupid cancer.

Sunshine!

Today was such a nice day out! We spent some time on the back porch soaking up the sun... Mom even rolled up her pant legs to try to get a tan. :)
She had a couple of long naps today. That together with the sunshine helped mom to be pretty chipper all day.

My sister Rallet came for a short visit this weekend with her girls. Mom has been talking about her coming for quite a while. I think the visit was a little difficult with Mom's memory going and all. She's not the same person and it's a bit hard for friends and family to see it. Also, Tatyana and Vasha came to visit. I'm sad I wasn't there to see them!

Mom still isn't eating much. Wendy and I noticed that when she does accept something, she usually sneaks it to her dog instead of eating it. I guess that's what we get for pushing! She says she has no appetite and nothing tastes good. She hates the protein drinks and the Gatorade. I guess the upside is that it eliminates the throwing up which really upsets her.

Mom talked today about this long dream she's been having about being sick. She asked me if it seemed like it had been a long time and I said yes. She said she couldn't wait till she woke up. I guess the hospice nurse came over and Mom was mad that she talked about dying. Mom just wanted to feel better. We all wish she could and we're trying to keep her as comfortable as possible.

We still have the most amazing people helping out...couldn't do this without you. Thanks!!

Fighting!

We Butlers are notorious for fighting. (Just verbally, I hope!!) I blame it on our Irish DNA and the need to fight for our rights! Anyway, that's what I think of when my mom gets really confrontational about taking medicine. I coaxed, cajoled, reasoned, and finally insisted yesterday that she take her nighttime meds. I don't do it very often - usually that job falls to my brother Tareq. He has talked about it but last night was the first time I experienced it first hand.

She insists that she's not in any pain and doesn't need meds. Unfortunately it's hard to get her to understand that if we lowered the regular pain meds, then she would be in so much pain that we'd have to give her morphine which knocks her out. I think Tareq gets an extra gold star for being so kind and sweet yet firm with my mom. He is our liason with hospice and knows exactly what needs to be done. He never loses his temper or says anything harsh.
Love you, T!

She couldn't keep anything down yesterday and is looking really thin. She's a fighter though; for good or bad, she's a fighter!