Wednesday, November 30, 2011

Bingo Day

Just got back from a visit with Dad. It was Bingo time at the house so he and a couple of the other housemates were sitting around the table getting ready to play with Janice, one of the administrators leading the game. Dad was sitting with his eyes closed, and stayed that way for the most part of my visit. I did get him to open his eyes to look at me and have some eye contact, but not much. He's a little more responsive to Anna. She was feeding him some chocolate "thicket" milk with a spoon and he was consistently opening his mouth for each spoonful he was presented (seems to do it with his eyes closed.) Anna said he does this for most meals, though he appears to have lost weight from the last time I saw him (could feel his spine through his back). Anna said that he had definitely lost weight...the hospice group, which had been considering taking him off, told Anna because of the weight loss (measured by his arm circumference) they would keep him on for another 2 months and then re-assess again. I haven't received any phone calls from the hospice nurse since the last time that Justine and I met with her in October.

Janice told me that Dad was surprisingly very alert last Wednesday, and vocalizing a bit. Anna reports that mostly Dad is sleeping or sleepy, but does have occasional "agitation" days where he is more alert, up all day (and into the night)...though unlike before, he really can't get up on his own, so hopefully is safe from any falls in that scenario.

When Dad is sitting like he does, with his eyes closed, it does appear to me that he is still hearing what's going on for the most part, and knew I was there (when Anna said 'it's your daughter, Barbara, he nodded)...in some ways it seems he is choosing to shut it out. At one point during the Bingo game he was focused on wanting to pull the card up off the table (it was taped down with scotch tape.)

Thursday, October 13, 2011

Today

I stopped by to see Dad today. At first, he wouldn't open his eyes or respond to me. It took Anna prompting him to finally get him to open his eyes. He looked like he wanted to form some words, but didn't do so, though I got a really nice big smile. Haydee was there today and said she couldn't get him to walk. They both reported that he continues to eat well, most of the time needing to be fed, not doing it himself. It sort of seems like he has lost a lot of his "muscle memory" where by he no longer seems to have the coordination to do some of the movements that he used to do, or does them, but shows a lack of coordination in doing so. For example, to smile, his face was contorting somewhat.

Anna mentioned that Dad periodically goes into the eyes closed routine perhaps intentionally, when the chaplin is there, for example. But then will peek one eye out when they're gone!

I haven't heard from the hospice group in awhile. I'm guessing he'll be up for an evaluation with the doctor sometime soon. Last doctor visit was June, though nurse comes weekly.

Friday, September 23, 2011

This week

Had a visit with Dad this past Wednesday, as well as a couple of weeks ago. I had heard from Johanna, the hospice nurse that Dad was showing "stiffness" when the caregivers were doing transitions. She thought perhaps he might benefit from a drug "baclofen" and was going to call me back to discuss that option. I haven't heard back from her yet, but when I was there on Wednesday, Anna and Al said he wasn't doing it quite so much lately as he had been. While I was there, Dad was being fed lunch, but he did look up at me with wide eyes to respond to my greeting and spoke a few words coherently. He looked good.

Haydee has been reporting that somedays Dad doesn't want to do much, but on others he is alert and still walks. When she was there yesterday, he was feeding himself and did walk.

I guess there's a chance that Dad might "graduate" from hospice if he continues to remain stable. I think his next assessment will be in November.

Tuesday, August 09, 2011

Visit with Dad

Barbara, Faye, Russ and I visited Dad on Saturday, August 6. I had previously seen him in June 2 or 3 times with Justine, Cora and then Chip while visiting Barb. In June, he was not opening his eyes much or talking, though he did appreciate the visit, held our hands, etc. They said at the time they were having to feed him though he was still a good eater, but he wasn't walking much. We also had a priest visit and give him the Sacrament of Anointing which he also seemed to enjoy.

On this visit, he was on a lounge chair and gave a big smile when we said hello to him. When Russ said hello, he said something like, "I busted you in the nose," and then that set the theme for the rest of the visit, as no matter what we asked or said, it came back to him busting somebody's nose, or his getting busted, or him busting two noses, etc. It was pretty funny, and he had his eyes open the whole time, and it was enjoyable. We heard that unlike a month or two ago, he was walking a bit, but it is getting very difficult to get him up and even also to sit back down, as he arches his back instead of bending forward. He is still eating, but I believe they feed him more than him doing it himself. The hospice nurse follows his weight by measuring his arm, and he has lost some. But I thought he looked pretty good, not underweight. He had a recent haircut from Haydee.

I am really impressed more and more with the great care he seems to be getting. We were looking at his feet, and I noticed how soft and smooth his legs were, it was clear lotion was being put on after bathing, for instance. I like it that I see the same caregivers each time I visit.

Friday, March 04, 2011

Update on Dad's condition

Dad went to see the doctor this past Tuesday as he continued with some coughing and wheezing (though still no distress.) His regular physician (Dr. Gee) wasn't there that day. Dr. Annable had prescribed an anti-biotic and also took x-rays.

Yesterday I got a call from the administrator, Chris, at Emerald Isle who said the caregivers were reporting Dad wasn't getting better and had been wheezing a lot in the morning. Chris contacted the doctor's office, hoping they might call in a prescription, but Dr. Gee, who was there that day, said Dad would need to be seen by him first to re-assess. I took him in for a 4:15 appt. Upon getting him in my van, with help from the caregivers, I did see the wheezing they had been observing. I could definitely hear that his airways seemed a little constricted, but again, he didn't seem too distressed by it. Within a few minutes, the wheezing had stopped and he seemed relax and comfortable. When we were sitting in the waiting room, Dad saw an overweight woman get up who was called to go in and Dad said clearly "She seems pretty heavy walking over there."

When the doctor arrived, he talked about Dad's xrays which did indicate some fluid in his right lung. We discussed the possibility of Dad having aspirated while drinking. Caregivers have said that Dad often coughs when/after drinking. They feel his eating/swallowing of food is fine, but he seems to have more difficulty drinking.

The doctor mentioned that they can run these kinds of swallow tests in the hospital. I told the doctor that if a hospital visit is not essential, I feel it is better for Dad---the experience of Dad in the hospital last year---how agitated, confused, uncomfortable being poked, prodded, moved, etc I personally feel is something to avoid if not necessary. I welcome discussion from others on this matter. The doctor obviously didn't feel it was critical..he prescribed a stronger anti-biotic as well as a diuretic which presumably helps get the fluid out of his lungs. Note that Dad's oxygen level was good (96%), and his BP was fine. The doctor also said he would order a home/health evaluation for speech/occupational therapy to review the drinking/feeding issue. He said that if Dad is having problems, a feeding tube might at some point be recommended. I think this is another discussion we would need to have should we face that decision.

The doctor also brought up the congestive heart condition that was discovered when he was in the hospital last year for his hip break, which may somehow contribute to the fluid in the lung. I should have asked more questions as the connection and the condition are not fully clear to me, but I will try to get more answers at his follow up, which is scheduled on March 17th.

AFter the appointment, I had to call a taxi (the same guy who picks up Dylan in his taxi/van for school) to take Dad home, as it was going to be too difficult for me to get him in my van by myself. I picked up the prescriptions and took everything over to the house. By the time I was there, Dad was happily finishing up his dinner at the table.

Paul and I stopped by today around 11am to see Dad. Anna reported that Dad had not been wheezing all morning. Dad gave Paul a big smile when he saw him. Hopefully he will continue to improve over the weekend.

Saturday, February 26, 2011

Cough

Got a phone call this evening from Anna at Emerald Isle. She expressed some concern that Dad has been having an unusual cough this week. They also noticed a couple of times when he was getting up and/or getting changed, that he even sounded short of breath. Haydee told me when she saw Dad on Thursday, his voice was hoarse and she thought perhaps he might be getting sick. She also mentioned that Dad seems to cough after drinking, and I got the same report from other caregivers there, though this seems to be an ongoing issue.

My immediate concern was perhaps he had aspirated, and might have a pneumonia. I went over there (just returned), and he sounded good and looked good. I didn't see any of the symptoms that were mentioned, though they told me it was only occasional. We did get him up to walk to see if it might spur the cough, but it didn't. I didn't notice any wheezing or distress with Dad at all. I asked him to breathe deep, putting my hand on his back, but he didn't really take much of a deep breath. When I asked him a few times how he was feeling, each time was "I'm feeling pretty good!" or "feel fine".

We agreed to continue watching him over the weekend, and then call the doctor on Monday for an appointment as needed.

On another note, Jennie was here this week and did the bulk of the work to complete Dad's taxes. We got them filed today...he will get $1900 from the Feds, and owes $672 to California.

Friday, January 07, 2011

Doing well

With holidays behind and kids back to school, finally got some time to have a longer visit with Dad. Unfortunately he was just sitting down to dinner (4:45!) so he was quite focused on that. He was having a nice looking healthy salad and pizza. He did talk to me a little bit, which was sort of an accomplishment because he usually won't respond at all while he is eating.

Reports from Haydee and Anna continued to be good...Dad walking stronger, talking a lot. He still looks great and seems quite content.