Post Vacation Update

Mom riding down the beach in the Camaro

 Well Mom made it to Florida. I had debated about cancelling the trip, but the family and I thought we should try it. Mom continued to have major swings in her symptoms. The plane ride was a little rough on her but she did bounce back. And she said she had a good time. We rented a convertible. We took a few rides along the beach with the top down, and let mom's hair fly in the wind.

Breakfast at my Wife's Brothers House

The first night we stopped to visit with my wife's brother, sister, niece and nephew. They were so sweet, and made us a few great meals and made mom a birthday cake. She ate pretty well the rest of the week. I had to continuously hound her about drinking and eating, but she was a good sport. I probably drive her crazy, but I just worry. She had a lot of seafood. We ate at a marina restaurant that was over the water on a pier, and at Bubba Gump Shimp. We also ate a racer cafe, where you sat in an old stock car from NASCAR.

Mom watching the dolphins.

Mom really liked the Shamu Show

We spent a day at Sea World. Mom did well, and I think she really enjoyed it. She went to the Dolphin show, and the Shamu Show. Everything was handicap accessible. All the shows had an area set up for wheelchairs, that was close to the front row and shaded. I was impressed with how nice the park was setup.

The Condo was beautiful, and mom had her own room. For once she didn't spend much time in her room. She did spend time out on the patio with us. It was a beautiful view, even thought the beach was on the other side of the condo.

Sunset from the Patio

 
I know the trip really tired her out, but I know she had a good time. The kids, mom, my wife and I, all made some great memories on the trip. We had a few nights riding in the car just being silly and we had mom laughing so hard she could barley catch her breath. Hearing mom laugh is a rare occurrence nowadays. That alone made the trip worth it.

I will never understand this damn disease!

After a really good day yesterday, I wake Mom at 6AM for her morning meds, and I can tell before she even gets up that something is off. I help her get out of bed and she is extremely stiff and moving very slowly. It feels like we went through a time warp, because Mom is exactly how she was 4 days ago. She is having difficulty walking, speech is slurred and almost incomprehensible, and her eyes are fixed staring upward. It took us over an hour to get her to the restroom and back to bed. After I helped her into bed she says to me, "Danny, you have the patients of Jobe." She also said she doesn't understand why she cant make herself move faster. I just don't understand how one day can be so good and in less than 24 hours she is back to a bad day.

Its still early today, and I can only hope that when she wakes back up, it will be a better day.

Good Day

Today Mom has bounced back to her baseline. I would even say she seams better than usual. She has been scaring me all day. Every time I go in to check on her, she is up walking around doing something. I think she is excited that she is so much better today, and just doesn't want to sit. Her speech is much more clear today also. We've had some good talks today.

I'm so glad to see her doing so much better! What a good day!

New Day same Symptoms

Late last night I picked up Moms prescription that they called in. They gave her Zofran ODT 4mg. She took one before bed and said they did help the nausea. I think mom slept a little last night. She still can't walk. She spent most of the day in bed. Later in the afternoon she did eat and drink a sports drink. She had a milkshake after dinner. I do think she is a little better.

The nurse got here within 15 minutes of my call. She checked mom out and all her vitals are good. She thinks maybe mom is getting the GI flu that has been going around. One of the kids had it this week. She was concerned with the major decline in her gait. Mom definitely can not get up today without help from someone. She just cant walk even with the walker. The nurse called Mom's doctor and she said she will call later.

The nurse and I talked about how she has a history of bad days. We both hope that its just another bad day and tomorrow will be better.

Long Night

Mom and I had a long night last-night. She started paging me around 2-3AM. She said she was nauseous, and asked for a bucket or something. She never did vomit but was up and down the rest of the night. 6AM finally rolled around and I got her pills ready. She wouldn't take them. If you know Mom, you know that she obsesses over her medication and never misses a dose. So I knew she must really fell bad. She wanted to get up and use the restroom, and attempted to get up and go. She got to her feet with the walker in hand, but could not get her legs going, especially the right leg. I had to help her into the restroom. This is the worst I have ever seen her. She went back to bed. It is now lunch time and she is in the same state, and will not eat. I called the nurse and left a message to have her come out and check Mom out. Maybe she has caught a bug or something. We'll see.

Vacation Planned for Mom

After much debating, we decided to do something Mom has said she wanted to do. We made plans to take her to the beach in Florida. Mom will have her own bedroom with a view of the Atlantic. I am so excited, because this is one of the only things she has ever said she wanted to due since she has been ill. I didn't think it would be possible. I called her best friend, who now lives in Florida, and planned a few days for them to visit. Her friend is close to the condo we rented. I told Mom about the planned visit and she just lit up. Its the first time in a long while that I felt like we could do something for her and bring her some happiness.

Sunday Dinner

Mom with her Brother and Sister.

We drove up to have Sunday dinner at her Nieces house in Springfield. Mom had a really good day today. Her speech, swallowing and gait were all better than usual.  She had a wonderful dinner. She also got to spend time with her Sister, Brother, and other loved ones. Time with the people she loves is the best medicine for her.

It was a good day! Thank You to my Cousin.

Another week.

Mom had a pretty good week. We got her out of the house quite a bit this week. Nothing exciting, just running errands, but I know mom still like to go. The head nurse was out on Tuesday and said she looked good. She is going to call the neurologist to see if there is any news from the MRI. The speech therapist was out yesterday. She said she will probably only be out 3-4 more times and Medicare will discharge mom. They have to show progress for them to continue paying for the therapy. Mom was trying really hard, and did well considering. She can barley move her lips now, and has trouble moving her tongue. I think the therapy would and does slow down the decline in speech, but not improve it. We'll see.

Fun Day at the Movies

Most of what I post as of late is negative, and I need to focus more on the positive.

Today was a pretty good day. Got mom up and dressed. Her hair was still done from the night before. The aid curls moms hair and styles it whenever mom will let her. My Wife, Daughter, Mom and I all loaded into the truck and headed for the movie theater. We saw "This Means War". It was pretty good. Everyone seamed to enjoy it. Then we all went to dinner, at our favorite Mexican restaurant. Mom even ate and drank a Coke. All in all it was a good day.

New helpful technique

With moms vision issues getting worse, she has been having trouble finding the channel she wants to watch. She just can't see the remote. With TV being one of the few things left that she can do, this is a big deal to her. She had been paging quite often, to ask me to find her channel for her. Many times I would go in to check on her and shes staring at the wall, because she got frustrated trying to find the channel, gave up, and turned the TV off. She didn't page me because she didn't want to bother me. 

We came up with a very simple solution. Moms favorite channel is 7. We put a piece of Velcro on the channel 7 button. Whenever she losses her place she feels for the Velcro and presses the 7 button. Then if she wants to watch another channel, she feels for the channel up/down button and counts to the channel she wants. So far this has worked really well.

Speech Therapy

The speech therapist was just out for a session. This visit was another evaluation. Medicare noticed that mom is not making any progress, and has asked the therapist to reevaluate mom. If no progress or anticipated progress can be shown they are discontinuing therapy. They are cutting her down to one visit a week starting this week. Mom is really upset.

MRI of the Brain

Due to moms rapid decline recently the neurologist had mom get an MRI of the brain to see what is going on. She just spent almost an hour in the machine. The technician said she should get some results in 3-4 days.

Another rough day for mom.

There has been a very slight but steady decline for the last month. I'll say "today is a bad day", and a few weeks later that day would be considered a good day. Out of the last 5 therapy sessions, the therapist stayed for 1. Mom was just too tired or upset. Her right leg is moving less and less. She could barely walk today, and fallen once. Not to mention the close calls. I fear that she won't be able to walk with the walker much longer. I hope I'm wrong.

The neurologist called today and scheduled an MRI of the brain for Wednesday. She also has a number of test lined up for next week.

She cried most of the day today. I spent the entire day with her today. Lots of hugs.

Biggest scare yet.

Thought a pancake would be soft enough. Mom started to choke on it and turn blue. I could see the panic in her eyes. I was panicked too. I picked her up out of her chair and did the heimlich. It finally dislodged. We are going to have to be very careful.

Trip to the Neurologist

Mom went to see the neurologist today. They were a little concerned with the rapid decline in her condition. They asked a lot of questions, and did blood work. They also changed her medications. She is to discontinue taking the Gabapentin that she was taking to help her sleep. They have her increasing the dosage on the Trazodone for four weeks and increasing again after that. Hope it helps her sleep.

The neurologist called later in the afternoon and said the blood work all came back normal, but they want her to have an MRI of the brain this week. More to come.

Cruising with Mom

Today was a beautiful day, and I had told mom that I wanted to get the hot rod out. She asked if she could go. If course I said yes. I was surprised she wanted to ride in that old loud Chevelle. She really wanted to go. And truth be told, I think I get my lead foot from her.

Mom and I heading out for a cruise!

Mom giving me the thumbs up!

We had a great cruise. Most of the ride we just poked along looking cool, but we did open her up a few times, just for fun. One more good memory to add to the list.

Swallowing issues this week.

Tonight was the second big scare this week. Mom choked on her dinner and couldn't breath. Very scary. It took everything I had to remain semi calm, on the outside. I was panicing inside.

We made it through the holidays

This was a difficult Holiday season. It was hard to see mom so ill. She didn't want to do much. I'm thankful that I got to spend so much time with her though. I hope see enjoyed some of it.

She has declined very rapidly in the last month. She is very weak, rigid and slow. I fear that she will not be able to walk for much longer. Her right leg tremors and is much weaker than the left. She scares me whenever she is walking. I try to get her out or at least up everyday though, because I know it is good for her. Her vision has deteriorated also. From what I can tell, all she can see is blurry outlines of everything. Her speech is probably the most noticeable decline. I can barely understand her, and visitors that don't spend everyday with her have even more trouble. The swallowing issues which go hand and hand with the speech, has also worsened. I believe this is the reason for her loss of appetite. Shes scared that she is going to choke. Every meal I have to attempt to convince her to eat and drink something. She's down to 101 lbs. She should be eating mechanically altered food and thickened liquids, but she absolutely will not eat or drink them.

She has an appointment with the neurologist next week, due to the decline. We'll see what they say.

Hello All. Trying to get through the Holidays

I haven't posted in a while. I've been really depressed, and a little disconnected. Last month, Mom's symptoms have progressed more rapidly than I have ever seen. Shes been really depressed, and always seems so tired.

She is having trouble walking and balancing. She had a fall today that could have been a lot worse. She was lucky, and landed in a cloths basket full of clothes. It broke her fall, but she did still end up with a bump on the head and a skinned up arm. There have been many close calls over the last few weeks. We take her shopping whenever we go, but shes getting really slow, and quickly gets fatigued. We have to keep the trips short now.

Speech has also degraded a great deal. There are many times in the last few weeks that I could not understand what she was saying. Many times she will get frustrated with having to repeat herself many times and just gives up. I tried to delicately suggest having a system to communicate, like flash cards or something, and she immediately stopped that conversation. She did restart speech therapy today, and I like the new therapist. She is working with mom on maintaining and hopefully strengthening her speech. She is using some techniques the previous therapist did not use, that seem to make sense. All we can do is hope.

There have been some good days over the last month, and I know I need to put more emphasis on the good. Thanksgiving was good for mom. She spent the day at her Nieces house with her sister, brother, and family. I know she really enjoyed the visit. We've also had some fun days, getting ready for the holidays, and doing stuff with the kids. I hope I can catch a second wind, focus on the good days, and be positive for mom. I always put on a happy face, and talk positive when I'm with Mom, but sometimes I'm pretty sure she can see through me.