Sunday morning and here we are. I was able to actually get outside and walk on Friday and Saturday but that won't be the case today.
He wants to move back to our house in Real Dallas. In fact, he's gone so far as to start taking artwork off the walls so we don't forget to bring them with us. I spend a lot of time putting things back when he's taken them off the wall. I find the bottle of V8 next to his bed and the bottle of OJ on the floor in his office. I guess I should laugh but to me, it's just not at all funny.
He's obsessing about driving and says he feels like a prisoner. He got a little nasty after dinner yesterday and that really worried me. He said he was going to call his friend John to take him back to Real Dallas.
He's consumed with packing up the house and getting back to Real Dallas. I don't know if it was a good idea or not, but I told him it was all taken care of - that the movers would move everything.
We're going to see our attorney tomorrow to get our estate planning documents executed. I'm not sure John will let him sign documents as he's going to ask him a few "simple" questions. There's not too much of a problem, really, since the only change in his documents was to remove his deceased sister. However, John recommended a trust in the event I predecease him and I'm not at all sure he'll be able to comprehend what John needs him to comprehend.
Tuesday morning bright and early we see Dr. Flippo after labs. She needs to prescribe something to calm his mind and I'm going to beg. He's still hiding his wallet but the Tile Mate pretty much takes care of that.
I wish I had more time to "vent" on this blog, but he really takes a lot of time.
*** Now it's nearly 5 o'clock and Jay's been attached to me all afternoon. I was able to do three loads of laundry this morning but once I took my shower and sat down, he sat right next to me. He still wants to "pre-pack" for the move to the Real Dallas but I told him the [imaginary] movers would do all the packing. I don't know if it's wrong for me to buy into his "reality" but at least he doesn't fight it. We watched Hallmark's The Beach House [Andee McDowell cannot act AT ALL so it wasn't all that good - very predictable]. Then we watched The Week Of on Netflix and Jay recognized all the music from Billy Joel so that was a good thing.
I wish I could sit down and have a one on one with God and get Jay's head straight but I guess Prayers are the only way to do it!
And Pray, I do!
Sunday, April 29, 2018
Sunday, April 22, 2018
April 22, 2018. What Glimmer of Hope?
It's been a week since my last post. That little glimmer of hope I saw seems to have gone by the wayside.
Jay had labs on Tuesday and Friday. On both days, his magnesium was low so he got 4 gms of magnesium each day which is a two hour infusion. He always takes the infusions so well - he's definitely my hero in that regard. He'll have labs again this Tuesday, the 24th, and if magnesium is low, another two hour infusion. We don't see Dr. Flippo until May 1 after labs.
His cognition is really fragmented. He's convinced we have two houses: one in Dallas and one in the Real Dallas. It's just impossible for me to convince him otherwise.
All day yesterday, he was extremely confused and worried and at points, terrified. Nothing would calm him down. I gave him a Sam-E tablet three times yesterday hoping it would calm him. On the news yesterday, there was a "story" about the fires in California late last year noting that insurance coverage would not cover the rebuilding of the homes lost in the fires. For the rest of the evening, he was convinced we were going to go to jail because of insurance fraud, saying we have two houses covered by insurance illegally. I know he absorbs what's on television so no more Sopranos.
When we last saw Dr. Flippo, he told her he had no guns in the house; last evening, he told me he does have a gun in the house. I've never seen anything more than a BB gun in this house, but he got my attention. I think we'll discuss it if his head clears up today.
This morning at about 6 o'clock, he came into my room with his flashlight shining in my face to see if I was awake - well, that'll do it! ;0) He crawled into bed with me but neither of us was able to fall back to sleep.
Right now, he's in his office, eating orange and banana salad while watching the Sunday morning news shows. The gal that plays Abby on NCIS is going to be on and he loves her. Surprisingly, he remembered she was going to be on from the promo last week.
Before starting the chemo [after the radiation nearly two years ago], his cognition was not good, but the chemo has really exacerbated his condition. I, of course, am feeling guilty because I encouraged him to do it, believing Dr. Flippo when she said she wanted him to have a "quality of life." I'm surely not blaming her - I should have done my homework. But, people need to know how horrible it is to have a loved one having to go through this. Dementia is horrible. I hope and pray I can stay healthy and take care of him at home.
Jay had labs on Tuesday and Friday. On both days, his magnesium was low so he got 4 gms of magnesium each day which is a two hour infusion. He always takes the infusions so well - he's definitely my hero in that regard. He'll have labs again this Tuesday, the 24th, and if magnesium is low, another two hour infusion. We don't see Dr. Flippo until May 1 after labs.
His cognition is really fragmented. He's convinced we have two houses: one in Dallas and one in the Real Dallas. It's just impossible for me to convince him otherwise.
All day yesterday, he was extremely confused and worried and at points, terrified. Nothing would calm him down. I gave him a Sam-E tablet three times yesterday hoping it would calm him. On the news yesterday, there was a "story" about the fires in California late last year noting that insurance coverage would not cover the rebuilding of the homes lost in the fires. For the rest of the evening, he was convinced we were going to go to jail because of insurance fraud, saying we have two houses covered by insurance illegally. I know he absorbs what's on television so no more Sopranos.
When we last saw Dr. Flippo, he told her he had no guns in the house; last evening, he told me he does have a gun in the house. I've never seen anything more than a BB gun in this house, but he got my attention. I think we'll discuss it if his head clears up today.
This morning at about 6 o'clock, he came into my room with his flashlight shining in my face to see if I was awake - well, that'll do it! ;0) He crawled into bed with me but neither of us was able to fall back to sleep.
Right now, he's in his office, eating orange and banana salad while watching the Sunday morning news shows. The gal that plays Abby on NCIS is going to be on and he loves her. Surprisingly, he remembered she was going to be on from the promo last week.
Before starting the chemo [after the radiation nearly two years ago], his cognition was not good, but the chemo has really exacerbated his condition. I, of course, am feeling guilty because I encouraged him to do it, believing Dr. Flippo when she said she wanted him to have a "quality of life." I'm surely not blaming her - I should have done my homework. But, people need to know how horrible it is to have a loved one having to go through this. Dementia is horrible. I hope and pray I can stay healthy and take care of him at home.
Saturday, April 14, 2018
A Small Glimmer of Hope
It's finally happened - there's hope that Jay's horrible terror might be easing up. What started out as a pesky last couple of days, ended up sort of on the up side! His prescription for Alprazolam was running out and on Tuesday I called Walmart to order a refill. I went to get it on Thursday as that was the last pill. Actually, I went twice, and on the second time the pharmacist herself told me it would be ready "first thing" Friday morning. I waited until about noon and went over to get it and was told there are NO REFILLS. I actually cursed out loud as I was SO frustrated. I called Dr. Haq's office and got the message that the office was closed from noon to one. So I got on the BSW portal and sent her a message. She called just after one and I explained as I had in the message what was going on. She was VERY apologetic and had a fax sent to Walmart with five refills while we were talking. She said "his dementia is getting worse" and that hit me hard - Jay too since I had her on speaker. She agreed that radiation and chemo has a negative cognitive affect. She agreed that since we'd not heard from Dr. Flippo about the results of the MRI, that no stroke had occurred. She told me to keep her up to date and I told her I would.
So, we went to an early dinner at Outback and while neither one of us finished our meal, dinner will be quick and easy tonight - warm up the leftovers!
While watching TV last night, Jay was overwhelmed with fear and wanted to go "home to Dallas" and I just could not convince him we were home. He said he trusted me but just couldn't get his head around that fact.
This morning when I went in to take him his first pill, he told me he was "terrified" and wanted to go home. I talked him through it and when I told him this IS our home and that all his things are here, he stopped shaking - yes, he literally shakes with fear - whether real or imagined his fear is there. It only took me about five minutes to get him calmed down and he said it made sense that this is home. Whew! A tiny ray of hope!
So when I was getting his pills together for the week, I added back the MCT oil capsule which I'd taken out as it interfered with what little appetite he had. So with MCT, NeuroMag and Lion's Mane, I think [and hope and pray] that some of this horribleness that is associated with his cognitive impairment might dissipate.
He's taken a shower already and is dressed and ready for the day. I might take him to Sam's Club later as he loves their hot dogs! How's that for health food?!?!
So, we went to an early dinner at Outback and while neither one of us finished our meal, dinner will be quick and easy tonight - warm up the leftovers!
While watching TV last night, Jay was overwhelmed with fear and wanted to go "home to Dallas" and I just could not convince him we were home. He said he trusted me but just couldn't get his head around that fact.
This morning when I went in to take him his first pill, he told me he was "terrified" and wanted to go home. I talked him through it and when I told him this IS our home and that all his things are here, he stopped shaking - yes, he literally shakes with fear - whether real or imagined his fear is there. It only took me about five minutes to get him calmed down and he said it made sense that this is home. Whew! A tiny ray of hope!
So when I was getting his pills together for the week, I added back the MCT oil capsule which I'd taken out as it interfered with what little appetite he had. So with MCT, NeuroMag and Lion's Mane, I think [and hope and pray] that some of this horribleness that is associated with his cognitive impairment might dissipate.
He's taken a shower already and is dressed and ready for the day. I might take him to Sam's Club later as he loves their hot dogs! How's that for health food?!?!
Wednesday, April 11, 2018
April 11, 2018 - Wednesday
Nothing better at this end. Steve came for dinner on Sunday and was pretty much stunned at the deterioration in Jay's cognition in just a month. Jay babbled about the hotel he stayed in in Indonesia and how he wanted to leave. I told Steve about Jay calling the police - again he was stunned.
So Monday morning Jay came into my room and said he needed "The Finder" which is me. I have a reputation of being able to find lost items and he's excellent at providing me with lost items. He'd lost his wallet. Since we had an appointment with Dr. Flippo we couldn't spend time looking for it. He had labs then we met with Dr. Flippo and as soon as she saw him, she knew something was off - she said she could see through him. I told her of the recent events and she agreed - no chemo, at least for Monday. She ordered an MRI asap to see if he'd had a stroke, more blood cultures, urine analysis, stool sample and since his magnesium was low, 4 grams of magnesium which is a two hour infusion. While he was being infused, I went home and searched some more - no luck. When I picked him up and brought him home, we searched some more - still no luck. During dinner, I jumped up and ran to his bedroom and searched under his mattress. Since he thought he was in a high rise hotel in Indonesia, I figured he'd want to hid the wallet from staff or thieves - nope. After cleaning up the kitchen, I went back into his bedroom and told him I was NOT giving up. He has a recliner on one side of his bed on which he piles the decorative pillows from his bed. I'd gone through the pillows but neglected to pick up the cushion. So, I picked up the cushion and wonder of wonders, there was his wallet. His face was so funny - his jaw literally dropped! He kept saying THANK YOU GOD!! I was extremely happy as the MRI was scheduled for Tuesday at 2 o'clock and he pretty much needed his medical cards. But all was well in this regard.
Tuesday, he was in the process of putting his office back together. I'd cleared the top of his desk which was absolutely covered with all kinds of crap! Of course, it's all back on top of his desk now and what's not there is on the floor. MRI was fine and he seemed in good spirits. We stopped at Pappadeaux for a bite to eat before heading home and he was still fine. Once we got home, he "lost" his wallet again but I was able to quickly find it. A friend recommended getting a Tile to slip into the wallet so that I can track it - ordered and will be here Thursday. He's back to being convinced we're not in the "real Dallas" and he wants to go home. My prayers for patience are unending and I really must keep it together.
This morning I took the "sample" back up to Texas Oncology Lab and then hit Willow Bend Mall for a little retail therapy. I was gone from the house less than two hours and yep, he'd "lost" his wallet again. Another quick find - can't wait to get that Tile! We ran over to Norma's for a quick dinner and then home for some TV therapy. He's still convinced we must return to Dallas. I can't seem to get him to believe me but I keep trying. I got his meds together along with two Colorado Capsules and a Unisom in the hopes he'll sleep and not worry all night.
We see Dr. Flippo on Tuesday to get the results of the MRI. I hope the longer he goes without the Erbitux, the clearer his memory will become, but I think that's a lost cause. Tomorrow, I'm devoting my day to getting his office back in order. Last time I did this I found year old bills but since last summer, I won't let any mail go into his office unless I've seen it.
Fun times!
So Monday morning Jay came into my room and said he needed "The Finder" which is me. I have a reputation of being able to find lost items and he's excellent at providing me with lost items. He'd lost his wallet. Since we had an appointment with Dr. Flippo we couldn't spend time looking for it. He had labs then we met with Dr. Flippo and as soon as she saw him, she knew something was off - she said she could see through him. I told her of the recent events and she agreed - no chemo, at least for Monday. She ordered an MRI asap to see if he'd had a stroke, more blood cultures, urine analysis, stool sample and since his magnesium was low, 4 grams of magnesium which is a two hour infusion. While he was being infused, I went home and searched some more - no luck. When I picked him up and brought him home, we searched some more - still no luck. During dinner, I jumped up and ran to his bedroom and searched under his mattress. Since he thought he was in a high rise hotel in Indonesia, I figured he'd want to hid the wallet from staff or thieves - nope. After cleaning up the kitchen, I went back into his bedroom and told him I was NOT giving up. He has a recliner on one side of his bed on which he piles the decorative pillows from his bed. I'd gone through the pillows but neglected to pick up the cushion. So, I picked up the cushion and wonder of wonders, there was his wallet. His face was so funny - his jaw literally dropped! He kept saying THANK YOU GOD!! I was extremely happy as the MRI was scheduled for Tuesday at 2 o'clock and he pretty much needed his medical cards. But all was well in this regard.
Tuesday, he was in the process of putting his office back together. I'd cleared the top of his desk which was absolutely covered with all kinds of crap! Of course, it's all back on top of his desk now and what's not there is on the floor. MRI was fine and he seemed in good spirits. We stopped at Pappadeaux for a bite to eat before heading home and he was still fine. Once we got home, he "lost" his wallet again but I was able to quickly find it. A friend recommended getting a Tile to slip into the wallet so that I can track it - ordered and will be here Thursday. He's back to being convinced we're not in the "real Dallas" and he wants to go home. My prayers for patience are unending and I really must keep it together.
This morning I took the "sample" back up to Texas Oncology Lab and then hit Willow Bend Mall for a little retail therapy. I was gone from the house less than two hours and yep, he'd "lost" his wallet again. Another quick find - can't wait to get that Tile! We ran over to Norma's for a quick dinner and then home for some TV therapy. He's still convinced we must return to Dallas. I can't seem to get him to believe me but I keep trying. I got his meds together along with two Colorado Capsules and a Unisom in the hopes he'll sleep and not worry all night.
We see Dr. Flippo on Tuesday to get the results of the MRI. I hope the longer he goes without the Erbitux, the clearer his memory will become, but I think that's a lost cause. Tomorrow, I'm devoting my day to getting his office back in order. Last time I did this I found year old bills but since last summer, I won't let any mail go into his office unless I've seen it.
Fun times!
Sunday, April 8, 2018
April 8, 2018
Right now, at a little past 8 am, he's drinking his coffee and watching TV. He told me he feels as if he hasn't eaten in days but isn't hungry. I told him he had waffles and bacon for breakfast yesterday and 3 slices of pizza for dinner. He said "you were the one who gave me waffles." He's worried about other people living here but I tried to explain hopefully successfully that it was just the two of us.
Steve might have some advice when he comes for dinner this evening.
Saturday, April 7, 2018
April 7, 2018 Part 2
So much for peace and quiet. It's 9:30 pm and I just got Jay into bed. It's been a very long day. The dementia is in full force and effect tonight. He insists we're not at home and insists the things he's purchased aren't his. When I try to tell him this is his home and has been for over 35 years, he accuses me of "trying to get even" with him for something. I even went so far as to take him for a ride at 8:00 o'clock this evening to show him that we're IN Dallas and that we're IN our home. When I put him to bed, he asked if I had his phone number to call him when I wanted him to wake up. I don't know where any of this is coming from. The deterioration is SO sudden. Sure, he's had memory issues and bouts of confusion, but the last few days have been shocking to me. We see Dr. F on Monday morning but she's his oncologist and I don't know how much she can do for us / him.
He's really scaring me in his sharp decline. Steve comes for dinner tomorrow and I hope he can give me some support or suggestions. I wonder if he's had a stroke or some kind of brain event. This is just too sudden.
I'm going to try to get some sleep but I think that might be a pipe dream!
He's really scaring me in his sharp decline. Steve comes for dinner tomorrow and I hope he can give me some support or suggestions. I wonder if he's had a stroke or some kind of brain event. This is just too sudden.
I'm going to try to get some sleep but I think that might be a pipe dream!
April 7, 2018
Saturday morning and I'm sipping my first - and probably only - cup of coffee. A little peace and quiet for the moment.
Because of scheduling at Texas Oncology, he didn't have infusion on Friday. It's TO's policy NOT to schedule a patient for infusion when their doctor isn't in the office. Dr. F was out on Friday so we'll be going to TO on Monday for labs, Dr. F and infusion. She'll be getting an earful as follows.
Friday was a very rough day. The dementia really kicked in. He took two showers because he couldn't remember having taken one. Naturally, the pile of his laundry is growing exponentially. But that's small potatoes in the overall scheme of things. After his first shower, he tried to sit on his bed and missed it completely and fell on the floor. He's 6'5" and weighs just over 200 pounds so I can't even help him. Thankfully, he didn't hit the metal trunk that was just inches from his head.
We watched NCIS: New Orleans Thursday evening and he was completely convinced we were IN New Orleans and was worried about "packing up" all the stuff and getting it back to Dallas. Last evening, we watched an episode of Fixer Upper [one of his favorites] and he was convinced that Tim Tebow and the two kids in wheelchairs were coming to live with us.
This morning, he tried to sit in our TV double recliner and he fell again - missed it completely. He really is "my toddler" and I have to check what he wears. Today, he had two pair of undershorts on; he tried to put another pair of socks on over the ones he already had on; he was able to put one shoe on with no trouble but he kept using the shoe horn to put the other shoe on when the other shoe wasn't even near his foot!
I know it sounds amusing, but believe me, it is NOT. My heart hurts for him because of what's going on inside his head. I know he's slightly aware of his "limitations" and he fights to prove to me that he's in complete control.
I think this might be a very long day as it's barely 9:00 am!
Because of scheduling at Texas Oncology, he didn't have infusion on Friday. It's TO's policy NOT to schedule a patient for infusion when their doctor isn't in the office. Dr. F was out on Friday so we'll be going to TO on Monday for labs, Dr. F and infusion. She'll be getting an earful as follows.
Friday was a very rough day. The dementia really kicked in. He took two showers because he couldn't remember having taken one. Naturally, the pile of his laundry is growing exponentially. But that's small potatoes in the overall scheme of things. After his first shower, he tried to sit on his bed and missed it completely and fell on the floor. He's 6'5" and weighs just over 200 pounds so I can't even help him. Thankfully, he didn't hit the metal trunk that was just inches from his head.
We watched NCIS: New Orleans Thursday evening and he was completely convinced we were IN New Orleans and was worried about "packing up" all the stuff and getting it back to Dallas. Last evening, we watched an episode of Fixer Upper [one of his favorites] and he was convinced that Tim Tebow and the two kids in wheelchairs were coming to live with us.
This morning, he tried to sit in our TV double recliner and he fell again - missed it completely. He really is "my toddler" and I have to check what he wears. Today, he had two pair of undershorts on; he tried to put another pair of socks on over the ones he already had on; he was able to put one shoe on with no trouble but he kept using the shoe horn to put the other shoe on when the other shoe wasn't even near his foot!
I know it sounds amusing, but believe me, it is NOT. My heart hurts for him because of what's going on inside his head. I know he's slightly aware of his "limitations" and he fights to prove to me that he's in complete control.
I think this might be a very long day as it's barely 9:00 am!
Wednesday, April 4, 2018
Day By Day
There is a terrific song from Godspell - Day By Day - which is going to be my theme song. That's my life, after all. As I posted, Saturday was very low. Then Sunday, he was pretty good. On Monday, he came crashing down again and yet again, I lost it. I try SO hard to keep it together and have started taking my Zoloft very early but on Monday, it sure didn't work. I'm trying to see what triggers his mood swings but just can't put my finger on it. Tuesday started out okay but then mid-morning he crashed. I quietly told him that I could not deal with crashes two days in a row as it's really getting to me. He calmed down and was good the rest of the day.
And here we are at Wednesday. I've got to take my car to the dealership but shouldn't be gone long. Our housekeeper, Josefina, will be here so he won't be alone and I'll try to get back within an hour.
So, I've asked Alexa to play Day By Day twice already and hopefully that will keep me steady.
Now off to get some fruit for Jay - watermelon today. He enjoys that so much.
And here we are at Wednesday. I've got to take my car to the dealership but shouldn't be gone long. Our housekeeper, Josefina, will be here so he won't be alone and I'll try to get back within an hour.
So, I've asked Alexa to play Day By Day twice already and hopefully that will keep me steady.
Now off to get some fruit for Jay - watermelon today. He enjoys that so much.
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