Mom Lost her Battle with PSP

On Saturday afternoon of June 23, Mom lost her battle with PSP. The nurses believe a urinary tract infection caused her to develop sepsis. The nurses had Identified the UTI 24 hours before her passing. The Process moved very quickly. I have to say, Hospice and their employes were absolutely wonderful throughout this process. I cant say enough about how great they were, and how grateful we were to have them there with us. Thank You So Much Hospice!

Hospice had wanted to give Mom "The gift of the day". We had a room rented to basically have a family reunion and cook out for Mom. She loved food and Family.

On Friday I had made Mom an appointment at the salon, to get her hair done for the party. While we were at the salon she started to complain of stomach pain. By the time she was done, she became unresponsive. I called the nurse on the way home. She quickly arrived and did an assessment. She pulled my wife and I out to our dining room and basically said this may be the end. She said they would give her a shot of antibiotics and she might rally. The pharmacy delivered the shot, but there was no change. My cousin, Mom's niece came down, and she, my wife and I, stayed up with her all night. My cousin and I traded places laying with mom in her bed.

Mom's one brother had driven up from Mississippi for her party. By Saturday, her brothers, sister, niece, and other family and friends were all present. We all sat with mom and told stories.

In the afternoon surrounded by loved ones, Sandra Lewis, Mom, quietly pasted away. For the first time in years she looked at peace. I was glad that she passed at home with her family the way she wanted to.

I am heartbroken at the loss of my mother, but am relieved that her years of suffering have finally come to an end. She is with my father and at peace with God. Through all the years of suffering with this illness Mom never deviated from her amazing personality. She was always polite, loving, caring, and as sick as she was continued to worry about everyone's well-being over her own, to the very end. She was an Amazing woman.

Steady Progression

For the last few days mom has steadily gotten worse. She continues to have difficulties with urinating and bowel movements. The swallowing and choking has become worse also. Her calorie intake is very low and I worry about her becoming dehydrated. The Hospice nurses have been out a lot and are closely watching her.

Added an oxygen machine

Mom is still very weak. Nurse ordered oxygen to see if it helps.

Nice visit today.

Mom niece and sister came to visit today. Mom loves when they come. I do too, because its one of the few times I get to see Mom laugh. They just act silly and have a good time doing girl stuff. Its some of the best medicine.

E Kit

Hospice called in the E Kit today and I picked it up. The E kit (Emergency Kit) or "End of Life Kit" as the hospice personnel call it is a collection of drugs to make a patient comfortable during their last few hours of life. It seems too early for this and was a little upsetting picking these drugs up. It makes the reality that some day this disease will take Mom;s life a little too real. Hopefully these will not be needed for quite some time.

More Changes

The nurse was out today, and made more changes to moms medications. They started her on Senna S tablets. These will replace the Colace that she has been taking. Her bowels and bladder continue to lose muscle control. She has to strain to urinate or have a bowel movement. The nurse had noticed decreased bowels sounds during her weekly check of mom's vitals, and had been concerned with the amount of time between BMs. Over the last few weeks the Nurse has made 2 trips to give mom Dulcolax suppositories, after a week without any BM. Hopefully the Senna S will help move things along and mom wont have to go through any more suppositories. As for the bladder side of things, the nurse had orders put though for straight catheters as needed so they will be here if she needs them. I hope they won't be needed for a while.

They also prescribed mom a lidocaine cream for her jaw. She has been having pain in her jaw close to where the plate is from the repairs of her facial fracture. I put some on her tonight and she said it really helped, so that is good.

Enough of the depressing talk. Today was a beautiful day, and mom and I spent a great deal of time just hanging out on the deck and talking. I got her a chocolate milkshake and we drank and just watched the clouds roll by.

Downward slide

Mom continues to decline. The new medication seems to be helping to increase her appetite. She has asked for a number of things to eat that she hasn't tried to eat in a while. The bad part is that she has been choking on almost everything she has asked for. There have been multiple time that I thought she might really choke. I could here the air whistling past whatever was lodged in her throat as she tried to catch her breath. Each time she would finally muster up a good cough and break it loose. So scary. Her speech has also been worse. More times than not she will give up trying to talk to me and say "never mind". The kids have been asking me what they should do, because they can't understand her when she talks to them. All I can say about her balance and gait is that in the last two days she has had four falls. Luckily none were bad enough to cause injury, but still scary. All of them happened because she just won't call for someone to help her get up.

Busy weekend

We tired to get mom out for the weekend. She saw the commercial for the Avengers movie on the TV and said she wanted to see it, so on Saturday we took her. This time it didn't go as well as it has in the past. Mom had one of her spells when she cocks her head back and stairs at the ceiling. She spent most of the movie trying to get her head and eyes down to see the movie. she missed most of it. It's just sad. She just can't do anything. We took her to a friends house to sit on the patio, enjoy the weather, watch the kids swim, and eat dinner. Mom didn't eat, and after a bad choking episode she wouldn't drink anymore either. needless to say we didn't stay long. Just a depressing weekend.

Lots of changes for Mom with Hospice

There have been a lot of changes over the last few weeks. Mom is adjusting to the new Hospice personnel. They have made it easy, as they are all very nice and attentive to Mom. She has a Nurse that visits at least twice a week. The Health Aid comes three times a week and helps Mom with bathing, fixing her hair, painting nails, laundry or whatever she requests. This has been an adjustment for me, and I haven't been leaving much for her to do. There is a Chaplin and a Social worker that visits mom twice a month. The Hospice doctor has taken over Moms care, so no more trips to the Doctors office.

As far as her condition, the swallowing and speech has definitely gotten worse. Most days she will only eat one meal, and it will likely be baby food. Her jaws are just to week to chew. She also says that she has no appetite.

The doctor has prescribed a new medication called Mirtazapine (7.5MG) to add with sleep and to increase her appetite. She also increased her Trazodone to 200MG every night, to help with sleep also. Hopefully tonight she will get some sleep tonight.

Mothers Day

Mom enjoying the deck.

 We didn't do much for Mothers Day, but it was a good day. We got mom some flowers to hang out on the deck. We had a small get together with my wife's family, and grilled out. Mom ate some of the goodies. Like I said it was a good day.

Mothers Day Flowers

Out to the movies.

Mom said she wouldn't mind seeing the new movie "The Lucky One". So here we are, a day out to the movies.
UPDATE:
We finished the movie. Mom had to get the tissues out. There were some sad parts. Good movie though. Mom said she really liked it. She needed to get out and have some fun after a really busy and emotional week. It was nice to feel normal. As close to normal as possible anyway.

Talk about Hospice

Its been another busy few weeks. The home nurse made her usual Tuesday visit. She noticed Mom's continuing decline, with the gait, poor speech and swallowing issues. She took Mom's vitals and all was normal save for a slight elevation in her heart rate. The nurse discussed with us that Medicare had finally decided it was time to discharge Mom. We've been though this a few times now and I was actually surprised the home care lasted as long as it did this time. So May 16 is the discharge date. I called a few places to inquire about some paid help to continue to have someone help Mom bath.

This morning as the health aid was leaving, I received a phone call from her neurologist. She stated that the home nurse has been reporting mom's condition, and that in light of her recent decline, she though it was time to have Hospice come out for an evaluation. This hit me like a Mac truck, even though its been in the back of my mind for weeks, and I've been trying to prepare myself for this very conversation. I said "I thought they only come out when there is only approximately 3 months left."  She answered " It's 6 months of estimated time left, and I think we might be there." Mac truck number 2 rolled though, and I had a good cry, the first I've had in a while. So now I am waiting on a phone call from Hospice to set up a meeting. I talked to my wife for a bit, and enjoyed her comforting eyes. I told her I needed to call the family. I called my Cousin to tell her the news, and ask for some support. I just don't think I can tell Mom about the meeting alone. She was very comforting and agreed she would be there will me. I guess you can never really prepare yourself to begin the process of saying good bye to a loved one even when you know its coming. At least we can let her know how much she is loved and make her as comfortable as possible.

Further Progression

Every positive moment seem to be followed by a negative. Mom has taken quite a jump with her symptoms in the last few weeks. At least from my point of view, it seams like a large jump. Her gait is a lot worse. This morning she got up early, and didn't page me like usual, and didn't take the pager pendant with her either. I went in to wake her and found her on the floor in front of the toilet. She said she had been there for a while but couldn't yell for help. Thankfully she was unhurt, save for a bruised elbow. Lucky again. I again lectured her about letting me know when she needs to get up. I'm pretty sure it went in one ear and out the other. She is definitely showing some personality changes. This situation ties in with another worsened condition. Her speech and swallowing are much worse. I can barely make out anything she says, and more times than not she just gives up after I extinguish my guesses. She gets so frustrated. I do too. She has also been choking on everything, but especially the liquids. As if that's not enough her vision has gotten a lot worse too. She mostly just stares at the ceiling and listens to the TV or her kindle. She has been getting confused more often too. I fear its more than I know due to the lack of communication. I know we have a rough road ahead, and the inability to communicate with mom is really weighing heavy on my heart. I wish we could find a way around it, but the other symptoms all block any alternatives.

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.