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.