Saturday

Was able to visit Dad briefly today. He was in his bed and his eyes were open when I arrived. I got what appeared to be a teeny smile. Anna mentioned that he is still eating, but not as much, turning it away sooner than he used to. He was able to make a few sounds in attempts to talk, but too weak to make anything out. The nurse had left me a voicemail yesterday. She saw Dad on Monday and Wednesday. She mentioned that he was talking on Monday, but not on Wednesday. His blood pressure was good and he had no congestion. They usually keep the TV on in Dad's room during the day and we have it tuned to the Olympics.

Tuesday eve

Just thought I’d let you know how my visit went with Dad this eve. He was awake when I arrived. Seemed comfortable, though I guess I would say that his overall “condition” appears more dire...not really the right word, perhaps just overall he seems weaker than when I’ve seen him over the past year. He seemed comfortable, and not in pain, but he was uttering sort of gutteral sighs, which is perhaps why it felt a little more strained. What’s weird, or interesting is actually how much it seems to me he seems to be more aware than I’ve noticed in prior visits. Perhaps I’m imagining it. It just seems like he’s paying more attention to me, and seems to be understanding, where as over the last year, he seemed more like he was tuning out most of the time (though perhaps it was me and my approach, or just the timing, who knows.) For example, I was asking him if he’d been thinking about his wife Suzie lately. Then I transitioned to explain how I had lost my husband Paul and how much I missed him. Of course it brought tears to my eyes and Dad was looking right at me and it just really felt like he was empathizing. Again, could have been my imagination. I also read a note to him that Janine had asked me to read to him...it was great, and again, I feel that Dad was listening and appreciated it. Love, Barb

Improvement

I just stopped by to see Dad today. Anna reported that he had a better day on Monday...was up for most of the day, talking a bit and eating (e.g., instant breakfast thickened with eggs for breakfast, pureed lentil soup for lunch, thickened apple juice). The gurgling is mostly gone too...Anna thinks the "patch" is working. The nurse had switched him from the liquid atropine to a patch, which I think she said is the same kind of thing used for seasickness. Apparently it also helps dry up the secretions. It is placed behind his ear. The nurse was there checking on him yesterday, and Anna said she is returning tomorrow. Today they said he's been sleeping most of the day, perhaps because he had such an eventful day yesterday. He looked comfortable, and was sleeping when I saw him, so I didn't want to disturb him. I was there picking up Haydee (car in the shop), so I will try and stop by again later in the day to see if he's more awake and have more of a visit. I forgot to mention that the nurse had said Dad's lungs were clear when she checked him yesterday.

Saturday

I was able to squeeze in a brief visit with Dad today. Today he was even more alert than a couple of nights ago, but he has been in bed for the last couple of days. Anna said that yesterday he had a total of about a "glass" of an applesauce-like mixture (thickened juice), and also that he was talking a little bit, doing so to indicate that either yes he wanted some, or no he didn't want anymore. While I was there today, he hadn't had anything yet and she asked if he wanted something and he said yes. He took several spoonfuls of the mixture and seemed to be doing an OK job swallowing. He was also "talking"...it was mumbly but he was getting sounds out, which he hadn't done the last couple of visits. He also didn't sound as gurgly (atropine might be helping with that, plus not eating as much.) I put my hand at the top of his chest however and it sounded a little "rattle-y". Anna said when changing him he definitely is moaning a bit when touched, and I saw a little of that today when I tried to help him move his head on the pillow. It was nice to see his eyes open more today, eating a little bit and talking a little.

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