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.