Update on Pa (and a Mini Update on Ma)

Pa has improved dramatically in the last month. He no longer needs physical or occupational therapy. He'll go once a week for speech therapy, maybe around 4 sessions.

Today he went back to work. Fifteen patients showed up. Busy day. He plans to stick to his old schedule of 5 hours a day, 4 days a week. Ma & Tito Lum helped out at the office.

Leg

He can walk without a cane. His balance isn't quite there yet (he can't stand on one leg), but it's improving.
 
Arm

•  He can drive. Ma insists that he stay off the freeway for now.
• He can play the piano, kind of. Nothing like before. He can do octaves and can play only two notes at a time. But he practices daily and is steadily improving. The arthritis in his fingers is getting to be a problem though.
• He can write slowly. Uppercase printing is fine. Cursive writing isn't legible yet.
  

Face/Head

• His swallowing is back to normal. The feeding tube was taken out two weeks ago. It hadn't been used in a month.
• He still has facial droop. This is the most visible sign of his stroke and may never go away entirely. He will get speech therapy for this.
• Speech is still a little slurred due to the facial droop.

Update on Ma

Ma is on physical therapy for her legs. She walks so slowly and with a cane. We're hoping therapy will make a difference. She used to have numbness in her legs, but it went away after she started exercising.

Handrail

The handyman is here and just installed a second handrail along the stairs. Ma has already tried it. I also had Pa go up and down the stairs. He said it's much easier having two handrails.

We finally got an aide to come out and help Pa take a shower. We already had a shower chair from when Ma was sick, and the showerhead is attached to a hose, so that made things easier. Isa & I will try helping Pa take a shower this afternoon.

It looked like a combination of Trazadone and Benadryl helped Pa stay asleep, but it stopped working after just a couple of days. Last night we tried Trazadone and Ativan, and that seems to have worked.

We saw Pa's cardiologist on Thursday. He was very nice and very helpful. He didn't like Pa's EKG results and had cut Pa's heart medicine in half. He wants to do another EKG on Monday to see if cutting the medication makes a difference.

Safety Recommendations

The physical therapist made several recommendations. Among them:

• Add a second rail to the staircase.
• Remove the shower doors and replace them with a curtain.
• Get a bed rail for the bed.

I found a hand rail at Home Depot but have no idea how to install it. Use L brackets maybe?

I think the shower doors can be removed easily enough. The reason the therapist wants it removed is so that there will be a wider opening when entering the shower stall.

The bed rail makes it easier for the patient to get out of bed. I'll order one from Amazon. There are versions that can be installed without tools.

All these suggestions should have been done when Ma was sick, but she never got physical therapy, and no one ever checked the house for safety. When she goes upstairs, she goes up one step at a time and uses a cane. She said she doesn't have trouble getting out of bed and apparently can take a shower standing up. I did get her a shower chair, but she's used it only once. The shower stall actually has two seats, but they're full of shampoo bottles and shower gels.

Home Therapies

Since Monday:

• The physical therapist has stopped by twice and put Pa through some exercises. I told her to work on his balance.
  
• The occupational therapist has also visited twice. She knew who Pa was because Pa would send patients to the home health company she works for.
  
• The speech therapist, who also knew Pa from patient referrals) thinks Pa doesn't need anymore help in that area. His speech isn't totally clear yet, and he still needs his food pureed, but continuing with his facial exercises is supposed to help with that. He also has more trouble than usual drinking water, so I bought a product called Thick-It to thicken his water.
• The nurse stopped by twice and thinks Pa is healing well. She suggested Benadryl to help him sleep, so we'll try that tonight. The Restoril he'd been taking has nasty side effects and doesn't keep him asleep.
  
• I made up a schedule for Pa so that we can do his home exercises in between visits from the therapists. I've been making Ma go through the physical therapy exercises with Pa to strengthen her legs. She always walks so slowly.
  
• Pa visited his PCP, Dr. Hsu, and underwent an acupuncture session to help his stroke recovery. He'll be getting acupuncture once a week for a while.
• Lots of friends have been dropping off food to eat, mostly soups and desserts.
• Pa fell tonight, sort off. He slid off his chair and onto the floor. He had been sitting on the edge of the chair to put on his shoes, and thought he could get up from that awkward position. It took three of us to get him on his feet again.
• I went home for two nights to take a break. I can't wait to move back home again. My cats, however, are perfectly happy, and think they own the place. They've been terrorizing Isa's cats.
  

Physical Therapy at Home

Pa woke me up only 2-3 times last night. He slept all the way through from ~2:00-9:30. I woke him up at 9:30 only because the physical therapist was stopping by to evaluate how much therapy he'll need at home. She said he has a lot of potential as long as he does the exercises. She wrote down some exercises he can do and said she'll be stopping by maybe twice a week for the next 3-4 weeks.

We already had a bunch of exercises that the physical therapist at the hospital gave us. We're supposed to do them all several times a day. I think we managed to do them just once. Pa gets tired easily. He needs to build up his stamina.

Pa has been sleeping in late since he got home. Tomorrow I plan to get him up by 8:30. Otherwise there won't be enough time for all the exercises he needs to do. It's not just physical therapy but also occupational and speech therapy.

Day Three at Home

It's only Day 3 and I'm already going crazy. Pa took a sleeping pill last night (Restoril). It makes him confused. He kept waking up in the middle of the night. He woke up at 1:20, 2:00, 2:05, 3:00 and 4:30 asking to have his blood pressure checked, take his medicine, and drink some water. It took me a while to figure out that's what he wanted. His speech is very garbled with his dentures out coupled with drowsiness from his pills. I got up at other times, too. He kept kicking off his blanket. Other times I'd hear him move thinking he's about to get up by himself, but he wasn't.

Tonight I put a few chairs against Pa's bed to keep him from getting up by himself. Maybe that will help at night. It won't help during the day though.

Day Two at Home

A home health nurse stopped by today. She knew Pa when she worked at Doctor's Hospital. She managed to get him a prescription for Restoril. He didn't sleep well at all last night (and neither did I). He had been using Vicodin as a sleeping aid, but that probably caused his constipation. So we got him a stool softener. Isa has prune juice for him on her shopping list. The nurse also promised to get us a supply of condom catheters to tide us over till the medical supplier sends us some.

Pa has been sleeping a lot since he got home. He has done very few of the exercises that the therapists gave him to do. I hope that changes that tomorrow.

I cannot get Pa to stop getting up by himself. I tell him over and over again that it's unsafe, but either he's not listening or he can't remember what I say. It's very frustrating. It's only his second day home, but I'm already so tired and want to move back home myself. I've moved in temporarily with Ma and Pa, but I really don't want to be here. This afternoon I fetched my cats. They're limited to the downstairs area while Isa's cats are upstairs.

Pa is Home

Within an hour of coming home, Pa stood up by himself when we weren't looking. You would think the fall last night would have taught him that doing things by himself s not a good idea, but no. He sometimes tips over to the right when standing up and can't correct himself. He walks too fast. He keeps bumping into things on his right because he doesn't look to his right even when being constantly reminded.

This afternoon he slept uninterrupted for 4-5 hours. He stayed awake for two hours, just long enough to eat dinner, brush his teeth and watch a little TV. He's in bed now snoring. I have to feed him through his feeding tube at 10pm. I hope he wakes up late so I can catch up on my sleep.

Early Morning Drama

I got one of those middle of the night phone calls. Pa fell out of bed. He was trying to reach for something, lost his balance, and slid out of bed. He wasn't hurt, thank goodness. But I hope this shows him it's still unsafe for him to do things on his own.

Turnaround

Today Pa was like a new man, almost like his old self again. He was asking me all kinds of questions when I arrived this morning. All the therapists noticed that he was more animated. He didn't eat much at lunch, but he ate almost everything on his plate at dinner. That's a huge improvement. I think what made the difference is Remeron, the antidepressant he was given last night.

We have to watch him carefully now. He's become overconfident. He walks too fast with his walker and doesn't wait for someone to accompany him. When he first arrived at rehab, he was given a balance test and scored 19 out of 48. Today it was 28 out of 48. While an improvement, he's still in danger of falling.

He was also given Ditropan for his bladder, and that seems to have made a difference in how often he has to pee.

Electrical Stimulation

Yesterday afternoon one of the occupational therapists did electrical stimulation on Pa's arm to stimulate his nerves. The session was to help him open and close his hand. Pa is too sensitive to the electricity, so the therapist couldn't go too high on the voltage. Today he'll work Pa's middle, ring and little fingers. They don't move as much as his thumb and index fingers. He does have a little movement on all his fingers, but he's a long ways off from being able to play the piano again.

I put on Pa's condom catheter last night. There's just something wrong about putting a condom on your own father. This version has an opening at the end where you insert a tube that goes into a urine collection bag.

Training Isa

Tonight the nurse showed Isa how to use Pa's feeding tube to give him food and medicine. Last week she was freaking out about it, but she did just fine tonight. She used a syringe to give him his crushed tablets mixed with water. Then she used the feed bag to give him his liquid nutrition.

Because of the stroke, Pa has been peeing a lot, especially in the evening. We decided that he'll use what's called a condom catheter when he gets home. It's basically an external catheter that goes on like a condom and lets you urinate into a bag. It will help him sleep through the night rather than every hour or so because he has to pee. The nurse assistant had us watch tonight when she put it on Pa. Tomorrow night I'll make sure Isa actually does it, then I'll do it the following evening. Again, I thought Isa would freak out about it, but she didn't. That's a relief because now there'll be two of us who can do the things that Pa needs.

Right Hand

Pa has been eating with his left hand. The occupational therapist wants him to start using his right hand. She gave us a piece of foam where you can insert a spoon. Pa can hold it in his fist, like a little kid, and use it to feed himself. He has to learn how to bend his wrist the right way to scoop up the food, lift the spoon to his mouth, and turn his wrist in a different direction so that the spoon enters his mouth the right way. He doesn't want to do it because he says the food will just fall back on his plate or his lap. But yesterday we did it together. I closed my hand over his fist and turned his wrist the right way so that he can feed himself without the food falling off. I think I'll keep doing that for several days till he learns it. The important thing he has to do is to watch what his hand so that his brain registers what he's doing.

Extended Stay Approved

We finally received word this afternoon that Pa's insurance company approved another week of stay at the hospital. His new release date is May 29. So today he received his usual dose of physical, occupational and speech therapy.

Pa ate a bit more than usual at lunch. He seems to prefer pureed food. But at dinner he barely ate anything. He didn't even drink his Glucerna (Ensure). He usually drinks at least some of that.
I've learned to do Pa's feedings. Some of the nurses prefer using a feed bag like an IV drip (the slow method), and others prefer using a fat syringe where you pour the can of liquid nutrition into it (the fast method). I did both methods today. It doesn't seem to make any difference to Pa's digestive system which method you use. I think Pa prefers the fast method because the sooner it's done, the sooner he can recline comfortably and go to sleep.

Pa had been receiving electric shock therapy on his face to wake up his nerves. But he found the treatment too painful and opted to stop it. Maybe he can replace it with acupuncture. I do ice therapy on his face when I remember. The speech therapist doesn't do it every time she sees him.

Right Neglect

As a result of the stroke, Pa has a condition called right neglect. He forgets about his right side and has to be constantly reminded about it. When walking, the physical therapist is training him to look to his right every five seconds. Otherwise, he'll bump into things on his right. When getting dressed, he acts as if his right arm is paralyzed and has to be reminded that he can put his right arm through his shirt sleeve. He doesn't look at people when talking to them and has to be constantly reminded about it.

Yesterday afternoon a researcher from the neuropsychology dept. at UC Berkeley stopped by to do a test. It was mostly visual and measured how much neglect Pa has. The right neglect was quite substantial compared to the left. The researcher said she may call later on to see if Pa is interested in a study that will might make a significant improvement in his right neglect.

Dr. Hsu, the doctor who's been covering for Pa and is also Ma & Pa's primary physician, stopped by to visit. He had just found out that Pa had a stroke. He was very nice and offered to cover for Pa for at least another month. Dr. Hsu also does acupuncture, and this is something we're interested in pursuing to see if it speeds up Pa's recovery. We will see Dr. Hsu as soon as Pa goes home. We haven't heard yet if the insurance company approved the request to have him stay another week, but I'm going under the assumption that it has.

Kit flew back to Switzerland yesterday. She'd been here since the day before Pa's surgery.

Training Day

This morning the therapists trained us (Ma, Isa, Tito Lum and me) how to take care of Pa once he's home. They showed us how to help him in and out of bed and how to assist him when he walks. Pa has some use of his right hand and arm, so we have to remind him to use them when dressing and washing up and not be tempted to do things for him. Buttoning up his shirt may take longer than usual using his left hand, but he can do it himself. We also have to remind him to speak slowly and loudly, and to eat small bites and drink small sips of liquids instead of gulping them down.

The nurse showed me how to feed Pa through his feeding tube. Isa and Tito Lum are too squeamish to do it. But maybe I can train Ma. Or maybe Pa can do the work himself with some assistance from Ma.

Pa is supposed to be released on Friday, but the hospital is working to get it extended for another week. We could know by tomorrow if the insurance company approves it. I really don't think he's quite ready to be sent home.

Another development is that Pa will need 24-hour supervision once he's at home. He's not progressing as fast as the therapists had hoped. But he will get home health care for a while, maybe a month, before progressing to outpatient therapy. A nurse and therapists (speech, physical & occupational) will come to the house to work on Pa.

One of the nurse assistants checked my blood pressure and Ma's and Kit's. They were all high, around 140/80. Aack! Only Pa had normal blood pressure. I couldn't go to the hospital Monday because I was feeling sick from my high BP. Ma had high BP that evening, too, and she stayed home yesterday. Kit has no symptoms.

Sense of Balance

The physical therapist has been working on Pa's sense of balance. He's learning to shift his weight when taking a step forward and back. When he starts to lose his balance, he doesn't automatically correct himself to keep from falling, so they're working on that. When I'm with him and he leans too far to the right, all I have to do is nudge him a bit to get him straight again. This morning when he started to lose his balance, he actually moved his leg to try to correct himself, so that's an improvement. It actually made it a little harder for me to assist him. But I didn't let him fall, so that's good.

Kit and I have been trained to assist Pa in and out of bed and onto his wheelchair and also to/from the toilet. We haven't dropped him yet.

Weight Loss

When Pa first entered the hospital, he weighed 136 lbs. A week later when he was transferred to Herrick, he was down to 120 lbs. We thought at first there was something wrong with the scale, but I think they weighed him a second time, and it was the same. This morning he was up to 122.3 lbs.

Pa still isn't eating much because he has no appetite. Last night he ate 1/8 of an egg salad sandwich, a little broth from his chicken noodle soup, and a few spoonfuls of chocolate pudding. But he drank about 7 oz. of Glucerna (Ensure), so that's a big improvement. I'm sure the Glucerna alone fills him up. I added a packet of Benefiber to the liquid so that he gets some fiber. Good thing they include Benefiber in his tray.

I ate the rest of his egg salad sandwich and chocolate pudding. No sense in letting them go to waste. They were actually quite good for hospital food. I had to explain to the nurse that Pa didn't eat all that food; I did.

Sample Physical Therapy Session

Here's what Pa did in physical therapy today. First the therapist had him walk with a walker. Pa has to remember to pick up his right foot when he walks; otherwise he shuffles or take very small steps. Then he had a balance exercise. All he had to do is take a single step forward and back with his right foot. But he's not shifting his weight correctly when he does that and ends up losing his balance. He also doesn't correct himself automatically even though he knows he's losing his balance.

Another exercise he did is going up some steps to simulate walking upstairs at home. The PT steps have railings on both sides. We'll have to add another handrail at home. It would be helpful for Ma, too.

The therapist also had Pa walk without the aid of a walker. He did pretty well with that and walked all the way back from the PT room to his room with just one rest stop.

Therapies

Pa gets a printed schedule every day showing when he gets his therapy. He gets one hour each of physical therapy (PT), occupational therapy (OT) and speech therapy (ST). PT is a single one hour session, but OT & ST are usually broken up into two half hour sessions.

PT concentrates on his legs -- walking and balance. OT involves mostly his arms. It includes showing him how to dress himself, brush his teeth and wash his hands. He's limited in what he can do because he can't move his right hand much. They also work a lot on his right arm, from the shoulder down to the fingers. Today he had to stack and unstack cones. It's difficult for him because he has trouble opening his hand, but he's better at it now than he was a week ago.

ST includes practicing his speech and exercises to build up his facial tone. He also gets electrical stimulation on his face during breakfast and some ice therapy. Yesterday the therapist had him talk to me on the phone to see how much I can understand

Once in a while, a neuropsychologist stops by to talk to him. A recreational therapist also showed up once, but all she did was take him up to the rooftop garden and let him visit with friends who showed up.