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.

Ohio State Medical Center Trip

Mom had an appointment at OSU Medical today. Mom asked about any new medications, or clinical trials. She desperately wants to get better. I knew the answer, but mom needs to hear it from the doctors. I was disappointed that they didn't prescribe her something to help with her sleep. Her insomnia is one of the worst symptoms she has right now. Last visit they told us if she was still having problems sleeping they would try a narcotic based sleep aid, but now that she had the fall with the hip fracture the doctor was afraid to try it. The side effects would make her more likely to fall again.  She commented on the decline in her condition compared to the last visit. She believes this is her new base line. Another depressing doctors visit.

The positive part of the day, was the 4 hours in the car. We spent most of the trip just talking. We also stopped at Steak n Shake per moms request. She loves that place. Mom had a burger and a caramel apple milk shake. So at least the whole day wasn't a bust.

Halloween

Today was another semi rough day. Mom still wanted to get up and move around. She put on a costume with me and helped hand out candy. I think she enjoyed seeing the little kids. She is so cute in her inmate costume.

Mom helping hand out candy.

Mom and I.

Trying to have as much fun as possible

Moms not doing well today!

Mom seemed off when I got her up this morning. She refused to eat breakfast, and would have skipped lunch had I not just fixed her something and brought it in to her. She said her hip is really hurting today and part of me fears we did too much over the past few days.  My gut tells me that it may hurt a bit but she is looking for a reason besides the PSP to explain her inability to walk today. Mom can usually get around OK with her walker. Not today. She is really struggling to get any good movement. She can barley keep her eyes open and her speech is very poor today. She wanted to run to the Halloween store we the Kids and I, and asked if we could take her with the wheelchair. She always wants to take the walker. She couldn't even get in or out of the wheelchair. I had to pick her up for all the transfers. I hate these days, and I know that this is a glimpse into what is yet to come.

Another Movie Night

We try to have movie night with mom every week. Tonight was Captain America. Mom said she really enjoyed it. I couldn't help but notice her fighting with her eyes. She gets stuck staring at the ceiling more and more. She always puts her hand over her eyes, like someone does when they are trying to shield them from the sun. She does this to try to refocus as she puts it. I hope she didn't miss to much. This is one of the few things shes has left that she can still do.

Trip To the Mall

My wife and I, along with some of the kids took mom shopping at the mall tonight. This was one of the better days for the week, and mom really wanted to get out of the house. We had a good night. Mom found some new slippers on sale and bought them. I tried to get her to buy some new shirts for winter but she wouldn't. Just gives me more ideas for her for Christmas. Ha. Ha. She did say that the walking made her hip hurt a bit. Hope we didn't over do it. Therapist said that the walking was good for her. All in all not a bad day.

Rough week so far

The nurse came out today. She voiced her concern about mom this week. The Physical Therapist was out yesterday, and caught mom twice during their session. She called the nurse to report, and informed her that, had she not been there she would have fallen. The aid that helps mom shower also commented on her balance, or lack there of. The nurse said she doesn't think mom should go to the bathroom, or anywhere without help. I told her mom will do it anyway. She talked to mom, and told her she needs to call for help on the pager if she needs to get up. Ten minutes after the nurse left, I pop in to check on mom, and she is rolling for the bathroom.

The shower aid was out tonight, and again she said mom got ahead of her and fell. She fell against the wall and the aid helped her up, so she didn't hit the floor. Still too close for comfort.

I don't know if she just doesn't want to listen or if she just forgets. Either way its stressful. I just keep wondering if today is going to be the day she falls and really gets hurt again.

Trip to Sisters House

Today was another good day. I drove mom up to her nieces house to spend the afternoon with her sister, brother and family. I stayed for a little while and ate some lunch, which was awesome. Mom's niece brought her home a little while ago. She really had a good time. They did their nails and toe nails. It is nice to see her happy. Good memories.

Today was a better day.

Mom munching down at Panera

There is so much negativity with this disease, and I need to add a bit of positive. Today was a much better day. Being a good day, Mom and I got out of the house and ran some errands. Mom loves Panera Bread, so I took mom out for lunch.This was a treat, sense Mom gets really self conscious about her symptoms and rarely wants to be in public. It was a laid back day, and I think she enjoyed it. I know I did.

Today Was a Rough Day

Mom is really struggled with everything today. She has spent most of the day crying. Days like today break my heart and make me angry at the same time. I just wish there was something you could do to help.

Over the past few weeks I have noticed her eyes have gotten worse, in the aspect of moment control. Her eyes will "get stuck" looking up and to the left. Its been happening a lot this week, but almost every time I've been in to see her today she is starring at the ceiling, crying. She said she just cant look down.

She has also been struggling with speech today. She'll open her mouth, make some noises, and start crying. I asked her about it, and she said she forgot what she wanted to say, or just cant get the words to come out. Just telling me this was a real chore.

Her other motor skills seem weak too. The Physical Therapist was here, and during the session she would have fallen. Luckily the Therapist caught her.

I hope tomorrow is a better day!!!

Another Sleepless Night

I have litterally learned to sleep with one eye open. Mom has not slept in two days,and most of today or technically yesterday, she spent most of the day barlly able to keep her eyes open. she's been in bed for about 2 hours and shes up and thinks its morning  . She was so upset when I told her it was only 12:30AM.  This insomnia really sucks. I wish they could find something to help this poor woman. Well I better grab a few hours of sleep before the next" false morning"

Symptom Update

I haven't posted in a while. I'm having a hard time the last few days staying positive and motivated. I don't like to post about me, because this is about mom. Unfortunately, my mental state has a direct impact on mom. I focus a great deal of energy on acting upbeat and positive around mom, even if I am screaming inside my head. One new symptom, with mom is sarcasm. She is the sweetest person I know, but for the last few weeks she'll snap at you with this sarcasm. I know its out of frustration and afterwards she'll end up apologizing for doing it. This has been putting me to the test.

I noticed  another new issue over the last few days. Mom has been pressing on her lower abdomen at bed time. I asked her if her stomach hurt. Tonight she final talk to me about it. She told me that shes trying to tell if she has to use the restroom, and that she just cant tell if she has to go or not. I think she is also having trouble urinating. She appears to be straining a lot to go. She hides it well, and will not admit to having trouble.  Shes gone 6 days between bowel movements recently and I wonder if there are similar issues there as well. But again she will not admit it.

I will share all this with the nurse this week when she stops in. Mom will be mad at me for bringing it up, but its part of my job.

Lucky Again

Mom fell yet again this morning. I had just gone in to check on her and start her Kindle, she's finishing listening to "The Notebook". In my room for a minute or so and I hear that sickening sound, that thud and the rattling of my wall. Moms bathroom shares a wall with the bathroom in my bedroom. Again, I'm sprinting down the hall. I find mom on the side of the toilet. Thankfully after thoroughly checking her out, I realized she's ok. I worry about how many times can she be lucky before she gets hurt again. Sometimes I wish I could put her in a bubble.

Can't Catch a Break

Just got home from the Neuro-Optometrists office. Mom's vision has declined significantly since her last visit. Unfortunately anyone who spends any amount of time with her knows this. She relies on touch often to find the remote, the handles on the walker, and just about everything.  We had planned to ask about the irritation in her eyes but the doctor beat us to it. She noticed it as soon as she walked in the room. She stated that PSP patients often blink less often, and also have a tendency to sleep with their eyes partially open. This causes dryness and irritation. After further testing, the doctor also discovered mom has an infection in her corneas, likely brought on from the blinking condition. So we now have lubrication drops and antibiotic drops to add to the list of medicines mom is already on.

Not Ready

Mom had an appointment with the digestive specialists today. They reviewed reports from the x-ray videos and the SLP's. The reports describe the issues with her swallowing and that she is currently not getting enough nutrition or hydration. The doctor informs Mom that he is scheduling her in 30 days to install a feeding tube into her stomach. She immediately becomes almost hysterical. I instantly interrupt the doctor and inform him that Mom does not want a feeding tube, and that's why she is so upset. He briefly starts to talk about mom's neurologist evaluating her to determine if shes competent enough to make decisions about herself. Again, trying not to get angry, I inform him that an evaluation is not needed. Mom is the ONLY one that can and should make this decision, and she knows exactly what the outcome of her decision entails. I also shared with him that before her symptoms were this bad she created a health care directive that clearly states she does want any form of artificial nutrition. He gave us some more information and told mom to think about what she wants to do and call if she wants to schedule the procedure.

Let me tell you, the car ride home was the longest. I've never been so lost for words. How do you comfort someone you love when there is nothing but bad or worse? What do you say when they ask you for advise on what to do? Where do you draw the line between holding on for as long as possible, while they suffer and continue to lose quality of life?

Mom and I talked until it was time for bed. Shes not 100% sure what she wants to do, but she expressed to me how very tired she is of fighting this damn disease.

Another Fall

Over the last few days, Mom has gotten braver and braver. I ask her to call me if she needs anything, and she tells me she will. She waits til I walk out, and up she goes. Well tonight I leave long enough to run out to the garage, and as soon as I do she gets up to open her window. While trying to open  it she falls backwards. The walker went flying one way and Mom the other. She had taken her help pendant off her neck and couldn't get to it. I walked in right after she fell, and immediately started to look her over. Mom says to me "I'm fine and I don't need checked". I looked her over anyway, and told her she's luck to not be injured and that I should make her go to the hospital just in case. This statement did not go over well, and Mom, very excited, told me she was not going to the hospital. Luckily, she does seem to be fine. I do know that this scared her quit a bit. She told me shes not getting up without calling again. I hate to tell this poor woman who has been so independent her entire life, that she has to call someone to basically do anything, but its the only way to keep her safe. PSP SUCKS!!!

Discharged from Home Care

The head therapist came to the house today. She gave mom a few exercised to do and took some notes. She asked mom a number of questions too. She decided that there was nothing more that they could do to help and discharged mom. I have mixed feelings about this but, we've been though this enough that I knew it was coming.

If we want to in a few months, we can have the doctor reorder therapy and start up again. I honestly don't think they help all that much. I think she gets the most benefit out of just having something to do, and the exercise is always good.

In the meantime, I have a set of exercises and activities that she and I will be doing in place of theirs.

Another Scare, but OK

Well, its 4:30AM, and moms got me a nervous wreck. For whatever reason I woke up at almost 4AM, I think I may have heard mom on the monitor. I look over at the little screen on the nightstand, and I see moms legs hanging off the side of the bed. From what I can tell from the little night vision camera, she is trying to reach her glasses. I'm thinking to myself "Shes going to get her glasses and look at the clock and go back to bed". She continues to fumble around for a few minutes, and I'm hoping if she needs something she'll press the pager button. No, she shoots up to her feet, swaying, and reaching for her walker, that I know is a good 5 feet away from the bed because that's where I put it when I helped her get in bed. So the second I see her feet hit the ground I am up, sprinting down the hall, hurtling the laundry basket like I'm in the Olympics. I get in moms room just as shes leaning forward toward her walker. I let out a sigh of relief. I thought for sure I would be too late and we would have another fall. She tells me shes going to the bathroom, and doesn't know why she didn't call. As much as she was swaying and stumbling, I'm certain she would have fallen. I put her back to bed, and now I'm going to attempt to go back to sleep.

A day at the Salon and a Visit.

Moms had some fun the last few days. Yesterday, I took her to the salon and mom got the works. Haircut, shampoo, perm, color, and style. This is one of the few things she really enjoys. She looks great. I told mom that we are going to have to make this a regular thing. I tried to get a picture of her, but anyone who knows mom can tell you, she hates getting her picture taken. I just wanted to share how pretty she looks.

Tonight, her sister, and nieces, came to visit. Today was another good day, as far as good days go for mom. She loves the company. I know she was excited for them to see the new hairdo, even though this PSP make it hard to read emotions at times.

Another Video Flueroscopy

Mom had another Video Flueroscopy today. They brought in a Speech Language Pathologist to try different swallowing techniques and also see how mom does with different types of liquids and solids. There are a few changes. They tried different positions during the swallow. Typically if a patient tucks their chin while swallowing liquids it helps close the airway and reduce the risk of aspiration. They found that none of the positions made any difference for mom. During one swallow with thin liquids, some of the liquid did penetrate the trachea. Unlike prior test mom didn't cough or feel the penetration. This is not good. This puts her at great risk of aspiration.  Additionally during swallows with solid foods, the food stopped at a bump where the aorta presses against the esophagus. From here on the doctor wants mom on soft food and thickened liquids, and she has to follow every bite of food with a drink followed by a hard dry swallow to clear her esophagus. These swallowing issues have to be one of the worst parts of this disease.

New Kindle

Mom just finished her first book on her new Kindle. She really enjoyed it, and she had me download another book today. This is simple enough for her to operate without my assistance, and I think it makes me as happy as it makes her. The menu system has voice guidance, so whatever you select it reads aloud to you. There are currently over 60,000 audio books available for the Kindle, and there is a book club that allows you to download books with a monthly fee, that is much cheaper than buying books separately. Finally something new for mom to do.

Aug. 24, 2011

I haven't posted in a while. So here is an update. We've been very busy. Mom has 2 or more visitors a day from the hospital (OT, PT, speech, Aids, Nurses)since her discharge back on the 4th. Her hip has healed very quickly.

Unfortunately the PSP symptoms continue to progress. Her vision is getting worse. This is especially frustrating for us all. I can only imagine how frustrating it is for mom. She gets upset just trying to maneuver in her room. I just fell bad because, I can't think of activities for her to do. I'm going to explore some new ideas today.

The other symptom that has progressed, and concerns me the most, is the swallowing. In her last video fluoroscopy a few weeks ago, they observed how mom's esophagus was working. It was not working well. The last few days she has had a lot of choking and trouble swallowing. Because of this she is eating very little. This is heartbreaking to watch. She has an appointment with an upper GI specialist coming up. I fear they will bring up the discussion about the feeding tube, and mom has made it very clear that she wants no feeding tube. I just hope my fears are premature, and we have some more time before the swallowing issue must be addressed.

Vacation Day

 Today was a vacation of sorts for us. I've not spent much time with the kids this summer, with all the craziness around moms illness. So we made a last minute decision to go to the lake and take the kids tubing, before school starts. My wife and I talked about taking mom on the trip, but though it might be too much for her. We called her sister and made plans for mom to spend the day with her sister while we were gone. This worked out well because her brother was in town from Mississippi, and she doesn't get to visit with him very often.

Mom spent the whole day with her sister and 2 brothers. She really enjoyed herself. I'll have to say, even though she enjoyed her stay, I still felt a little guilty going to the lake. But I think it was a welcome break for her and I both.

 

Mom with her sister and brothers.

Kids made mom a blanket

The kids and Allison went to the craft and fabric store today. They made mom a new blanket. She loves stuff from the kids that they make.

Discharge plans are set

Mom had another really good day.  The doctors met today and set moms discharge for August 4th Thursday. 

The Good Day Continued with a Visit from a Friend.

The rest of the day continued to be a good one. Right after dinner, one of moms really good friends, Pat, stopped in for a visit. They hung out for a good while. Mom showed a few more smiles, which is always nice. I hope tomorrow is as good as today was.

Good day

I had breakfast with mom this morning and she seemed very alert today. She ate everything. I decided to stay for some of her therapy today. Physical therapy had her walking with the walker at first and then without, and mom did very well. She then worked on stairs, sitting and standing from a chair, and side stepping over obstacles down the twin bars. Mom did amazingly well on all. Today was the first time I have seen her do any activities without assistance. We'll take as many good days as we can.

Home Pass

Well, one of the days mom has been looking forward to finally got here and almost didn't happen. I get to the hospital early to make sure we have time to get mom ready and fill out the paperwork for the home visit, and the nurse tells me there are orders from the doctor stating no home visit. Mom became very upset, I'm confused, and so are the regular nurses (mom had a sub today). The nursing staff and I have been talking about this visit for days. I had the nurse page the doctor, and he called within a few minutes. I had the nurse pass the phone to me and doc and I had a discussion. He stated that Friday they had a meeting and decided mom was too weak for a home visit, and he wanted her to rest. My reply to that was one, where else would be better to rest than her own bed, and two some communication would be nice. I had planned the whole day, with family coming down and all. I also expressed that I though I was just as capable as the hospital,to providing all the care she needed for the day. With some reluctance he wrote orders for the nurse to allow a 2-4 hour home visit. This made mom a little happier.

So we pack up and go home. Moms sister and niece, came down and stayed for the whole visit. As usual mom really enjoyed the visit from family. Time with her sister is the best medicine she can get. I realized today that when they are together, its one of the few times I get to see her smile. Smiles are few and far between, and I cherish them every time I get to see them. We ran out and got mom some fast food. I bet it really tasted good after 2 weeks of hospital food from the dysphagia menu. I kept her out for a little longer than I was supposed to, so she got to hang out at home for almost 5 hours. Not near long enough.

One of the negative points of the visit, was the realization that moms PSP symptoms are worse and she's going to require a lot more care than before. Bottom line is before the fall she could walk anywhere in her room without help, and now shes going to need help to move anywhere. This scares the crap out of me, but we'll just have to take it one day at a time.

Visit form a Friend

Mom had a few visitors today at dinner. Her friend Thelma and her husband, stopped in to visit. They brought her a little pot of roses and a card. I could tell they were a little surprised at moms condition. The PSP has progressed quite a bit since their last visit. I had to play interpreter for mom. Shes very hard to understand. I understand most of it, even when others don't. I think I'm just with her a lot and tuned into her routine. Mom got very frustrated with the communication gap, and started to cry a few times. Even though it was a sad visit, I'm glad they came. I know it brightened moms day.

Day Pass Planned

The last few days have been a lot of the same. Moms been doing a lot of therapy. Shes been in a good amount of pain. The doctors have tried a number of different pain medications, in an effort to find something that relieves the pain but doesn't make her so dizzy she cant do the therapies. Long story short, she is back on the Vicodin. Its the only thing strong enough to help the pain.

I spoke with the social service rep, and Mom gets a day pass on Sunday. This means she gets to come home for 8 hours, bu she is still not discharged. She's so excited to come home. I have mixed feelings. I'm excited for her to come home too, but also scared to see how well, or not well, she does getting around at home. The main purpose of the "day pass" is for me (caregiver) to evaluate how she does, and continue to plan for the real discharge. On a happier note, her sister and niece are going to come down to visit while she's on the "Day Pass". She is always happy to see her sister.

Ying and Yang

This afternoon mom seams very alert, but uncomfortable. I talked to the nurse and she informed me that they had been giving mom Vicodin, but they made her dizzy and lethargic. So for today she has only had tylenol, and they are not helping much. she's in a lot of pain.

Another day of rehab

No better no worse today. I did confirm that mom is getting Vicodin every 4 hours, so that says a lot, since they make her so loopy. She off to therapy, so we'll see what the day has in store for us.

Roller coaster ride of recovery

For every good day it seems there has to be a bad one. Mom is very unstable today and having trouble sitting up or moving in general.  When she wants to she's moves fast but uncontrolled. The nurses are still having trouble with mom getting up on her own. She did it once while I was in her room, and she stood up quick and fell back into her chair before I could get to her. This is a very dangerous situation for mom, and I'm just not sure she understands that she might fall. Is this the dementia stage of the PSP starting? Today really has me thinking about how I can change our setup at home to insure her safety. Unfortunately, you can only do so much, and ultimately mom is the biggest factor in her own safety. She has to follow the rules.

OT Shower

Todays first session was OT, and we worked on showering, dressing and related. Up until now mom has been able to do this alone. From here on she will need assistance. This will be a learning curve for all of us.

Saturday July 23

I came to the center early today. Mom seems much better this morning. We are eating breakfast now and then she has Occupational Therapy. I'm going to attend her therapies today. We'll see how today goes. I'll post again later.

2nd Day of Rehab

Not a good day. Mom was choking a lot this morning, so the speech therapist set up another video Flueroscopy of mom swallowing. The new video showed that food is getting stuck half way down the esophagus and her swallowing is weaker, allowing some liquids to penetrate into the trachea.

To add to the day, mom seams confused again today.  I know mom is exhausted. They really worked her today. I hope that is all it is.

1st Day of Rehab

Today was moms first full day of inpatient therapy. Her day was very busy. She had OT at 7:45, TR at 9:30, OT again at 10, PT at 10:30, Speech at 11, Swallowing at 12, at PT again at 3. She did very well today.

Moved down to the rehab center

At around 5pm they finally moved mom down to inpatient therapy. Pretty uneventful day. Mom spent most of the day anxiously waiting to move. We'll take uneventful.

Day 8

I got to the hospital early today. I have not talk to mom yet, because she's still sleeping. That was weird to write because mom hardly sleeps with her insomnia.

Good News

We finally got some good news. With mom close to her normal self, mentally, she has officially be approved for the in-patient rehab at Kettering. She has to stay upstairs in the Orthopedic wing for tonight and as soon as a bed opens she'll be moved. A patient is scheduled for discharge tomorrow, and the room will need cleaned, so they tell me she should be moving sometime in the afternoon. It's nice to finally feel like we're moving in the right direction.

Day 7

I over slept a bit this morning. I missed moms breakfast. I called the nurse station on the way to the hospital. They said she had a great night. No "Sitter" needed last night! But they put mom back on mechanically altered food, and mom is not happy. I stopped at the bakery downstairs and picked up some muffins, doughnuts, and coffee. As soon as I get back and give it to mom the RN pops in. Busted! She was nice about it but the Speech and swallowing therapist was in within about 10 minutes. She cleared mom for the food but still wants her to have thickened liquids. Unfortunately I have to agree.

As far as moving to the rehab unit, we are still waiting.

Improvments and Visitors

Well its been an interesting day. Mom finally slept today. When she woke up she was finally starting to act like her old self. Then this afternoon her sister, niece, and cousin, came to visit. She is really starting to show improvements, mentally. I think the family visit did her a world of good. She laughed and smiled for the first time in a while, and it was so so nice to see. She also had a real dinner (Turkey Dinner) for the first time in 7 days, and she loved every bite.


I just hope she does well tonight, and doesn't require a sitter. I also hope it's not too late too get her into the rehab center here at the hospital. We'll see. At least she is becoming less confused.

Mom's Confusion may cause issues

In patient rehab is up in the air. Due to mom's confused state, the hospital may not allow her stay. I've talked to the Social Services Rep and a Rep for the rehab center, and tried to convince them to give her another day. I just know that once the medications are out of her system she will be back to herself. Their concern is that she will still require a "sitter", and this is something they do not do down there.

Moving to Rehab

Dr. Harvey was back in to visit, and mom has been approved for in patient rehab here at the hospital. I had been hoping this would be approved. I was worried that we would have to place her in a nursing home for her rehab, and I feel that she will get a lot better care here at the hospital. As soon as we get a call that a bed is available, mom will be moving downstairs.

Day 6

Today makes 6 days at the hospital. I unfortunately had myself convinced that mom would be back to herself this morning, and I was wrong. Mom is just as confused as yesterday. Her doctor stopped in around 8AM and said her hip looks as good as it can. He also assured me that her confusion will subside and she will be her old self again at some point. So until then we'll be doing laundry in her bed, and she'll curse at me because I can't show the laundry to her.

Quick Update

Moms doctor stopped in and thinks she is delirious from a combination of the PSP, pain medications, and anesthesia. He is considering give her some anti-psychotic medication, to try to knock her out of it and maybe help her sleep. She hasn't slept in 31 hours now. The hallucinations continue to get worse. I'm really starting to wear down. 

Going to be another rough day.

I got here around 6AM today, having convinced myself that she would be herself today. I asked the nurses how the night when. She has been up all night. No sleep. I walk into her room and she is doing something in the air. The hallucinations have gotten worse. She wont sit still, and continues to try to get out of bed and undress. She has been caring on conversations with people that aren't here. She keeps talking to Dad (he pasted in 2008), and asking me to get his stuff ready to go. She thinks her sister and brothers are all here and talking to her. She keeps reaching for items that aren't there. She'll close her eyes for a few seconds and then scream out of nowhere. I tried to feed her breakfast, and she wouldn't eat. She kept telling me to give her a ham sandwich. I told her there was no sandwich. She then got angry, yelling at me to look at it, and give her the damn sandwich. She spit at me and pushed me away. This is heartbreaking to see her like this. This is not my mother. I pray that this will wear off soon. I want my mother back.

Rough Day

Today was a tough day. I arrived at the hospital this morning and the nurse was feeding Mom breakfast. She had eaten almost all of it so I started the day thinking things were looking up. It only took me a few minutes to realize that Mom was not being herself. She was talking load, clear and fast. Speech therapy had been trying for months to get mom to do this. She was talking about random off the wall things. This went on for most of the day. I decided to leave in the afternoon to get something to eat and say hi to my wife. I spent about an hour at home and the hospital called. They wanted me to come back to try to get Mom under control. She had taken her clothes off, pulled the IV rack over onto herself, and would not calm down. My wife drove us back down. Mom was now hallucinating and just not being herself at all. The nurses moved her to a new room directly across from the nurse station to watch her closer. I just cant understand what is causing her to act so crazy. I kept asking the nurse about her meds. They tell me this happens a lot and it's normal. This was not normal. At 7:00PM they had a "Sitter" come in. This was a person to literally sit there all night and watch mom to make sure she stays in bed and doesn't hurt herself. I came home to rest for a while. I hope tomorrow is a better day.

Morning after surgery

Moms much better this morning. She says the pain is a lot better. She is talking and responding well. After recovery last night she was quite the opposite She had her surgery yesterday around 3:00PM. Surgeon said everything went very well. She got out of recovery around 8PM last night.

Long Day

Well its confirmed, Mom has a broken hip. She has a femoral neck fracture, and the femur is displaced from the ball. The doctor has told me she will require a hip replacement because the ball gets its blood flow from the main part if the femur. This means the ball has not had any blood flow. We had hoped for sugary today, but looks like tomorrow. I had really hoped it would happen today, Mom is in a great deal of pain.

At the emergency room.

Just followed the ambulance here from home. They think mom may have a broken hip. I went in to have breakfast with Mom about 6:00AM and found her on the floor in her room. She had evidently, gotten up early to take her pills and fell.

New Sleep Study

Well we picked up a device today called an actigraphy watch. It's a small watch like device used to assess sleep-wake cycle across many consecutive days and nights (Mom will wear hers for 7 days). The unit measures gross motor activity. The unit continually records the movements it undergoes. The data is later read to a computer where it can be analyzed. She is also going to keep a diary of her sleep schedule. I'll have to help her fill it out. Hopefully we'll be able to help mom with her insomnia.

Visit to the Salon

Took mom to the salon today to get her hair done. We got this wonderful young lady named valarie. She was very frendly and nice to mom. not to mention, she did a fabulous job on Moms hair. She looks so cute, and i know she feels better when her hair looks good.

Fireworks

Well tonight we took Mom to see fire works. Some friends of my wife and I go to this nice spot up on a hill, that looks right down onto Delco Park. We had to do a little off roading to get there but I think mom though it was fun. We played some games before it got dark and set off a few of our own fireworks. It was a good night. Mom and Dad had always gone to Delco on the forth for as long as I can remember, so its nice to keep it going.  

Out to the Movies

Today we took Mom to see Transformers 3. She's been talking about it for a while. Much to my surprise she wanted to see it in 3D. This is one of those things that we all really like. You should have seen the 8 of us rolling in there, transformer t-shirts, 3D glasses, and all. We took up half a row. We had popcorn, pop, and plenty of snacks. We all loved the movie. It was the best one yet.

Coney Island

Today was a great day. We went to Coney Island. Mom did well. We even got her on the paddle boats with us. (See video). She said she really enjoyed it. She wasn't able to ride any rides, but she enjoys watching the kids and we had plenty of snacks. Mom cracked me up. Her favorite snack for the day was a cherry slushy. It was really warm out.  I was glad she went.

Ocupational Therapy

Today was a quiet day, but a good one. Mom had Therapy again today. Leah knows that she enjoys baking, but can no longer do it on her own, so she helped mom bake some chocolate chip cookies. On the way home she told me she really had fun.

Appointment for Sleep

Today mom went to see her family doctor. The sleep study has been reviewed by the sleep center, OSU, and her doctor. They have agreed to try a drug called Trazodon. Its actually an anti-depressant, but is often used to assist with sleep. It may help with both.

Graduation Party

Mom and I went to her nieces house for her great nephew's graduation party. We had some good food. The best part was watching Mom spend time with her sister. They really enjoy each others company. I am going to have to get her up there more often.

Mom Pumping Iron

Today was another round of Physical Therapy. Mom started off by walking briskly on the treadmill. Then her therapist decided to step thinks up a bit. Mom had her first round of weight lifting. She used a number of nautilus machines that work various muscle groups in her legs. Stronger legs will equal better balance.

After mom's workout, she had Speech therapy. She was discharged last week for the swallowing portion of therapy, and she was told that June 30 she will be discharged from the speech side.

Bottom line is, She's not better but the insurance won't allow any more. I talked with the therapist and she said we can probably get it started again in about 6 months. I've paid close attention to the activities they have done, so we'll just continue to do them at home on our own. The therapist has already sent a lot of material home with us for "homework".

Vision Appointment

I made Mom an appointment with the Optometrist who specializes in patients with neurological issues. Her vision is the worst symptom of the PSP to date. Her vision has declined a great deal in the last 6 months.

Mom got some good news. Her eyes have changed a lot since her last visit. Without glasses her site is worse than it was before, but with a new prescription she should be able to see better than she could with the current set of glasses. And they will be able to incorporate the prism into the lenses instead of the stick on prism she has now. that alone will help. 

So we went to the showroom and mom picked out a really cute pair of glasses. In 2 weeks they should be ready. I can't wait and I know mom is excited too.

More therapy

Mom continues her physical therapy. She had a fill in today. The therapist was nice but Mom doesn't like when they change.

She had swallowing therapy today also. They discharged her saying she is better. This is the part I don't understand. This is a terminal progressive disease. The therapy is supposed to help her to slow down the decline. They always discharge her and I see little to no improvement. Mom agrees.

Fathers Day

We had a great day. Mom spent a good part of the day with the kids and I . My wife's father and stepmom came over in the afternoon for a cookout. Mom ate with us. Its probably the most time she spent out of her room for one day in a long time. After everyone left she watch Falling skies with me. Shes been talking about watching that since the commercials started.

Out to the Movies

Mom's been talking about the new Green Lantern Movie so we took her to see it today. She did really well. We had popcorn, pops, nachos. pretzels, and the works. Being the sci fi fan she is Mom loved the movie. Went home and had a good dinner. We got to spend a lot of time together today. It was a great day!!!!

Sleep Study Results

Another one of the possible symptoms of PSP is insomnia. the area of the brain the disease affects also controls sleep. Moms doctor had her spend the night at the hospital and have a sleep study performed. Today was the follow up appointment. So the doctor says she slept 4 hours for the night, which is exactly what mom had told them before the study. Then says there is nothing else wrong. He tells her he already discussed her case with her doctor and they think mom is depressed and she needs to take antidepressants. Mom was not happy with this comment in the least. Mom said "They didn't help before, so why would it help now", and I agree. I'm going to call the Neurologist at OSU on Monday. I have a feeling she will side with Mom. So for now, there is no real progress on helping Mom get some sleep.

Good news.

Mom's Physical Therapist did a progress evaluation today and to my surprise, Mom has improved in every area. Shes is still considered to have a considerable fall risk,but she has improved. I really thought that with this disease and its progressive nature that the therapy might postpone the inevitable decline, but I hadn't expected any improvement. We'll take any good news we can get.

June 15 2011

Today was a depressing day. mom had Occupational Therapy today. The therapist had mom work on brushing her teeth. I could tell mom was embarrassed practicing something so simple. (simple to people who have control of their bodies). I stopped to get Mom a salad for lunch, that she had been talking about. After lunch she put her PJ's back on and laid in bed for the rest of the day. I tried to get her to do something, but she just didn't want to. I finally got her to come out and eat dinner with us, but as soon as she finished dinner she went back in her room. It's day like these that make me question my ability to provide Mom with ample care and activities.

Movie Night

Today was a good day. Mom seamed to be in good spirits.  She and I took a long walk. The weather was as close to perfect as possible. We always engage in a good conversation on our walks. We had a good dinner thanks to my wife,and Mom actually ate at the table with us. She tries to avoid eating with anyone because she is embarrassed by the way she eats. She may drop a few things hear and there and coughs a lot. She makes it a bigger deal than it should be. I was just glad to see her not eat alone.

Later we popped some popcorn, with extra butter of course, kicked on the big plasma TV, and the surround sound, and watched a movie (Battle Los Angeles). Mom said she really enjoyed it. She loves SciFi. Must be where I get it. I wish I could make all our days as nice.

Call from A friend

Mom's best friend, who is retired and moved to Florida a few years ago, called me. She was concerned about Mom. She called to talk and had a very hard time understanding her. It is becoming increasingly difficult to understand mom's speech as the paralysis sets in. She has to really concentrate to not slur and get good volume.

I talk to her when I got home. She was so excited to hear from her friend.

Quiet Day

My son and I just went in to spend a little time with mom before she goes to bed and she was already in bed. I think she is tired after today. Mom had Physical Therapy and Speech Therapy today for 2 hours. PT was quit a workout compared to what she normally does. Speech also got her going today. Her Therapist focused on cognitive abilities today. She really struggles with this. Mom always tells me after therapy that she feels stupid. I try to tell her shes not stupid, her brain just wont let her find the answer. Its up there, but she just cant access it. It may be 4 hours later and Mom will blurt out something she couldn't remember in therapy. I hope she sleeps well.

Therapy Time

We are at Physical Therapy. In not sure that this does her any good besides exercise, but she seams to look forward to it and the Therapists is so nice. She is very good with Mom. I look forward to it because it is so hard to find stuff mom can do.

First blog

Well this is my first blog. I wanted to start this blog to provide myself an outlet, and hopefully provide a platform for others to learn from my many mistakes while dealing with this horrible disease that is slowly stealing my mother from me. I fear the first half of our journey is already completed, but only time will tell.