Post-mortem brain autopsy

Barb and I were able to complete arrangements with USC's neuropathology lab today so that we can have a brain autopsy report and diagnosis for Dad when he dies. We discussed this quite some time ago, but I had never followed through the complete process. The report will hopefully tell us if Dad really did have Alzheimer's or some other form of dementia. It can also, perhaps, be useful for the rest of the family as a medical history.

Now that I have had a chance to sit and ponder, I am thinking of what Dad must be going through. I am glad that he seems to be okay as far as pain is concerned.

Thanks, Barb, for visiting Dad and letting me know how he is doing.

I hope you are doing okay and hope that you and your family and friends are able to help you.

Today

Went to visit with Dad again this afternoon. He was in his bed again, but this time he did occasionally open his eyes. When I first arrived, the gurgling was more pronounced. I sat with him for quite awhile and talked to him again, with similar responses from Dad as last night. I spoke the names of all the grandchildren and great-grandchildren (19 and 18 respectively, right?) At times, he would frown or make a face that seemed to imply a bit of pain, but it didn't seem to last long. Dad had been given some blended food for breakfast. The nurse had come by late morning, and suggested not offering lunch, for fear of aspiration (food/liquid getting into the lungs instead of his esophagus). I understand about aspiration not being good as it can lead to pneumonia and/or trouble breathing. I don't really understand exactly "why" the gurgling is happening in the first place, if it's just him losing his swallowing ability or what. I will ask the nurse more specifics next time I talk to her. They are continuing to give him the atropine (which is in liquid form, and they give him just a drop). When I was sitting with him, I would occasionally encourage him to cough or make the sound of clearing my throat, and lightly touch his lips to encourage closure. By the time I had left, Dad's gurgling was less pronounced and he seemed to be more in a sleep mode. Anna said she will probably see how he will do for dinner tonight.

Tonight

Went to see Dad...he was lying in his bed with the top of the bed angled up a bit. He was on his back and holding his mouth open and apparently sleeping. Anna explained that his secretions are actually "pooling" in his throat, and the concern is that he will aspirate. The Atropine helps to dry up the secretions, and she mentioned that might be adding to him keeping his mouth so open. I sat next to him and spoke to him for awhile. It seemed to me that he was fairly responsive to my voice and what I was saying...his eyes never opened, but he moved his forehead or would sort of frown, and then sometimes start to cough like he was about to wake, though never did. It's not clear he was actually sleeping, or if he was just dozy or what. His skin looked pretty good, not too flush or pale, and he wasn't warm and felt normal (I meant to mention that when I saw him last Thursday, he felt warm to me.) As I have expressed to him before, I wanted to thank him for how much he did for me, taught me, and most of all, loved me. I reminded him of some of the significant things and people in his life, and what a great life he had lived. I also told Dad how much all of his children (naming them all to him), grandchildren and great-grandchildren loved him. Not trying to inject any sense of panic, or impending bad news with my thoughts here, but did want to share, recognizing there's nothing to be lost in getting those words out now and many times in the future. Hopefully he'll wake up in the morning and want to have breakfast. Though apparently of late he really is sleeping a majority of the day (sometimes 22 hours), only waking to eat and be changed. I'll continue to keep you posted. Love, Barb

Dad declining

Hi everyone, I went to visit Dad last Thursday. When I arrived, he was in his recliner next to two of the other ladies watching TV. He did respond with his eyes to my initial greeting, but after that didn't seem to want to give me eye contact. I saw with him for awhile and held his hand, continuing to try and engage him, with little luck. I noticed that he seemed to be coughing a little. I got an occasional look, but he didn't say anything. Before leaving, I told him several times I loved him. Today I got a call from the Hospice nurse. She wanted to let me know she and Dr. Graham had been by and noticed he had secretions, which could be an indicator of having aspirated. They have prescribed Atripene, which presumably can make him more comfortable. THe message I received from her earlier in the day said that she wanted to let me know that this is sort of an indicator in a turn in his condition, though when I finally spoke to her this afternoon, she didn't necessarily say it was imminent. She said she'd be following up on Friday if she hadn't heard from the Emerald Isle staff sooner. A little while ago, I received a phone call from Anna. She too wanted to let me know about Dad's condition. She said Dad didn't want to wake up for dinner tonight (obviously unusual). Also, she said when they changed him in bed, he didn't fight them like he usually does. My sense is she was also alerting me (us) to a declining condition that I imagine she's seen a lot of. Note that everyone appears to be on top of making sure Dad is not in any pain. I'm thinking of heading over right now just to check in while Ryland can watch Dylan. I'll keep everyone posted. Love, Barb

Music for Dad?

Hi all...did anyone happen to hear the story today on NPR about music for patients with dementia? Does anyone know what kind of music Dad likes? I don't really remember him listening much to music, though I guess he did like to dance. If you give me some suggestions, I will try to put it on an ipod and see how he reacts.

Dance with Dad

I went by for a visit with Dad today...for the first time in several visits he was more awake this time. I got a nice smile and bright eyes when I arrived. He was mumbling a bit, and seeming to have a hard time hearing, but was definitely giving me a lot of eye contact and pleasant responses. I helped feed him some thickened apple juice and he enjoyed it, opening his mouth wide for every bite. Anna said he continues to be a good eater. In general, he's having some very weak days of lots of sleeping and staring at the ceiling, but also will have alert days as well.

He got on to something about "dancing," pointing me to Anna or the guy on the TV set, saying "dance with him." He was in his recliner...eventually I moved to his other side and asked him if he wanted to dance. I grabbed his arm and started dancing with him (as he was seated, so it was mostly just "arm dancing" that we were doing.) I was doing twirls and humming music and moving my feet...he really seemed to enjoy it. When I stopped after a bit, he was moving his arms like he wanted to do more, so we did it some more. His arms were strong and he was holding me firmly when I would do a "dip" and a few times I would come in for a peck kiss, and he kissed me back! We enjoyed it for quite a while...very nice!!

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.)

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.

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.

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.

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.

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.

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.

Doing well

Sorry for infrequent blogs of late--busy prepping for my Special Children's League Fundraiser and also trip to NY to visit Melissa and new baby.

Dad has been doing the same...still walking, eating well, some days more talkative than others. Today when I went to visit him, his speech was strained, though Haydee said that earlier in the day he was speaking well. He seemed stuck on a phrase as I spoke to him, perhaps something he heard on television--can't recall it exactly, had the number 4 in it. I brought out some photos and he still kept repeating the phrase, until I got to a photo of Mom and mentioned it had been four years since she had died. He then said "I wish she didn't leave." Continued to show the pictures, pointing out photos of granddaughter Suzie and that she was expecting her 2nd child.

Anna has reported that all is well with Dad. She and Al said they wished that the other residents would eat like Charlie! The new gentleman that had recently moved in unfortunately died this morning (found dead in his bed at wake-up.)

Got a letter from Emerald Isle management that they are increasing the cost per month from $4000 to $4200 "due to rising staffing and operational costs" effective January 1, 2011. For now, I am still utilizing Anna and Haydee, each an extra 8 hours/week ($15/hour) to give Dad more individualized attention, including exercise and social interaction. I think having Anna for 4 hours on 2 days, secures some extra attention and good will from all the Emerald Isle caregivers (Anna, Al & Juana) on the other days of the week as well. I think Haydee, who is so conscientious, pleasant and friendly, offers Dad a regular special visitor that I hope and think he enjoys. Let me know if you have some other thoughts.

Friday evening

I went to visit Dad this past friday evening. He had finished dinner and was in his bed watching TV. I have to say, he just looked so content and comfortable. His face just looked fantastic. Wish I'd had a camera...will try to remember next time. As soon as I arrived I asked how he was doing and he said in a very pleasant voice, "just great." We conversed for a little while...his voice was strong, and the context of his statements were there, but the sentences as a whole were sort of gibberish. Anna reported that Dad had been doing well all day, walking strong, and talking a lot. She used the term "alert" to describe it.

Getting better

Ryland was out of school early yesterday, so he and I stopped by to check in on Grandpa. He seems to be getting better. He was in his room on the recliner watching TV. They are still keeping the residents mostly separated to avoid contagion.

Dad said he recognized me, and he seemed to stare at Ryland for a bit. He said he was doing 'great.' Tried to get him to tell us about his cross country days, sharing Ryland's current news, but he didn't elaborate.

Anna reported that Dad is now starting to show some of what he used to do well before the surgery where he starts to get up on his own, saying he has to do something, so they are keeping a close eye on him. He continues to take walks during the day, eat and sleep well.

Catching a cold

Got a call from Anna today that Dad seemed to be catching a cold. I stopped by a little while ago to visit for a bit. He was quite sleepy. He was in his room in the recliner watching TV, but very dozy. They are trying to keep the residents separated to help allay sharing of the virus. Anna said he had a slight fever in the morning (99) and that his voice was hoarse, occasional coughing. I told her she could give him Tylenol which she had done. He seemed fairly comfortable, though pale when I saw him. She is helping him eat and drink to ensure maintaining hydration. We're having a little heat wave...the change in weather seems to be affecting people...Paul had a bad cold last week.

Visit

Went to visit Dad today...lately have only been able to squeeze in brief visits, but today I had a little more time. I showed him the postcard that Cathy sent him, and he was able to read some of it on his own. I asked him if he wanted to go for a walk, so we did. We walked inside the house as he said he didn't want to go outside. He is slow, but methodical. Took a break to sit in the wheelchair then chatted some more. After awhile, took another walk back to the recliner, where he seemed happy to rest for awhile. All reports from the caregivers are good. His appetite is still good...when I'm there during a meal he won't even look up from the plate to respond! Overall wasn't very talkative today, but looked good and when I asked how he was doing he said "i'm doing fine!" They are expecting a new roommate next week...a gentleman!

Doctor's Appt

Today I took Dad to a physical check-up with Dr. Gee. Anna was working, so she traveled with us to assist with the transfers. Dad had to skip breakfast for the blood work so he was a bit lethargic. He complained when he got "stuck" for the blood test, but after I gave him the snack I brought for him, and he had some juice, he seemed to be happier and woke up a bit. He did well getting in the car for the ride home, and after we got back, he walked from the driveway into the house. He doesn't seem to be experiencing any leg pain when walking.

Dr. Gee said Dad looks good. We made an attempt, but were unable to get Dad up onto the table, so the doctor did his checkup with Dad in the wheelchair. His BP was 122/66, right ear a little waxy, no wheezing. These are his current meds:

Aspirin 81mg, 1x day
Amlodopine 5mg, 1x day (blood pressure med)
Metoprolol 50mg, 1x day
Aricept 10mg 1x day
Namenda 10mg 2x day
Prozac 10mg 2x day
Lisinopril 5mg 1x day (bp and heart med. Prescribed by Dr. Lai in hospital)
Senna Tablet 2x day
Colace 1x day

Anna told me that Dad is usually taking walks a couple of times a day now, making several "loops" through the halls in the house. She also said that for the past few days, except this morning, he was initiating getting out of bed in the morning, without them having to prompt him. In general, it sounds like there is still occasionally some complaining with this morning get up routine, but nothing unmanageable. Apparently he has been sleeping well, and has made no attempts to get up in the middle of the night, except once when they heard him, and he needed to have a bowel movement. Anna also said they still use the Hoyer Lift to get Dad into his bed at night, to get him placed properly and that he no longer complains about it.

Anna also said that Dad is very talkative, and talks to some of his housemates quite a bit. When I visited this past Sunday, they were celebrating one of the ladies' 101st birthdays! Perhaps there's something special in the water at that house....Dad is almost the baby. 105, 103, 101, 95, 94, 93.