I don't know who reads this but I thought I might ought to update.
Dad passed away on June 26, 2015 at 8:25 pm. The official time is listed as 9:30 because it took over an hour for the hospice worker to get there and verify the passing. It was an event I will never forget and will always be grateful that I could witness.
Mom slept in the room as long as Dad was there. I stayed over night on nights when he looked particularly bad. I'd wake up and he'd still be there so I went home the next night to sleep. On Thursday the 25th my brother and his wife came and we all stayed. Doug read to Dad some of his favorite poems and we played Glenn Miller cd's (another favorite). Mom, Marivel and I kind of took turns watching and sleeping during the night.
On Friday the 26th the day was as our new normal. We all stirred around, ate, visited, and decided that I would go home later that night and Doug and Marivel would stay and go home Saturday. Terri and her kids (who live there), Scott, Katy and their kids were all there most of the day. As it got later Mom was sleeping on the couch and the house was quietly buzzing with everyone going about the business of life. I went in to sit with Dad and knew things weren't going to last much longer. We had already spent time reading about the signs of end of life and he had them all. It was hard to tell if he was breathing or not so I put my hand on his chest. Two short inhales and he was gone.
The next couple of hours was hard but Hospice made things so much easier. Once I called them, they made all the other calls and arrangements so we could spend time calling family. We had expected Dad to leave us any minute for three weeks but it was still hard when it happened. The funeral home guys got there and started to take Dad out. My brother Doug said no and stated that 'Dad came into this house on his own strength. He would leave it on the strength of his family'. So Doug, Scott and Rick carried him out. As they closed the bag my eight year old grandson Aylor gave him one last hug.
This won't be my last post because there are other stories. The tender mercies of our Father in Heaven got us through this process in ways that need not be forgotten. There are people who helped us in so many ways for which I will be eternally grateful, not the least of which is my daughter and daughter-in-law Terri and Katy and my husband who for three weeks didn't know when or where dinner was and if his wife was or wasn't coming home.
Monday, July 20, 2015
Monday, June 15, 2015
Life Comes Full Circle
We are nearing the end. Terri called a week ago Sunday and said dad was unresponsive, hadn't eaten in almost 3 days and was still in bed at 2:30pm. Rick and I went over to see if we could help her roust him up. We couldn't and called 911. I explained to him that EMTs were coming and would take him to the hospital. He nodded a very weak agreement.
Once there it was determined that he was severely dehydrated, had bacteria in his blood and a very enlarged, bleeding prostate. He was listed as a "comfort care" patient which means they were more concerned about keeping him comfortable than prolonging his life. There was so much blood in his urine that they did a procedure to correct that on Friday and he was discharged on Saturday.
It was my intention to call Hospice and find out if we qualified for help last Monday but the hospital stay took care of that for me. They were very nice and informative. There was no question that he qualified so they took care of everything. A hospital bed was ordered and Scott, Rick, Terri and Katy got the living room all set up and ready for Dad's return.
He came home on Saturday afternoon and the Hospice coordinator came to make sure we had everything we needed and to tell us more about how it all works. Scott, Terri, Katy and I had a quick on the job training as no one else was coming to help until tomorrow (Tuesday). We had to empty the catheter bag, clean up the poo, keep dad from trying to get up, turn him every few hours, try to get him to eat/drink, keep him from fidgeting with the catheter, convince him to keep what little clothing he had on, adjust him in the bed etc. The four of us were so proud of ourselves when we realized we could do all of this AND change the soiled sheets while he was still on the bed. Maybe one reason he was in the hospital so long was for us to observe how to do some of these things.
Terri once said (when she moved in), "I will do anything but I won't wipe the man's butt!" Well, she has very lovingly and gently done exactly that. Last night it took all 3 of us girls to clean him up, we sent Scott in to help Erica make her top bunk bed. The men in our family are a tad squeemish. She has come so far in her ability and understanding of her role as caregiver. It has all been more than we imagined but if we don't stress on the long term and take one day at a time we'll do fine. It makes it easier because Dad is not at all mobile so we no longer have to worry about him leaving the house or falling.
I've had to explain several times that although Mom is very aware that she is 80, she's not aware that her thought processes are at about 9 or 10. She can't really help much at all in Dad's care but she does keep him company and can alert us if he comes around. She's doing well enough under the circumstances.
As I read about the last stages of life I see that he is in the eleventh hour. This may last a few weeks or a few days but the indications are all clearly there. It's funny because one of his greatest fears was that he would divulge sensitive information about his past military service. The reality is the only thing he seems focused on is his years at the storehouse/cannery. He talks, somewhat incoherently, to an unknown audience and we've come to understand that we don't need to respond because that confuses him. He recognized me this morning. My cousin's daughter Jessica came to visit and for a brief few minutes he talked with her and seemed to genuinely connect with her.
He's not eating or drinking much of anything, which is part of the process. I think today we may have gotten a whopping 200 calories in him. He has to take an antibiotic twice a day with food so we try to get him to eat a few bites of egg or pudding to help with that. We don't force the issue...we can't. Once in a while his sense of humor shines through the dark veil of his mind. Yesterday a lot of family came over so Scott went home and brought over 4 of his baby bunnies (he has 17 of them). I held one up to Dad and said look how cute. He looked at it a few seconds and said, "wait a little while and he'll be lunch!".
I don't remember if it was yesterday or this morning but he said something to Terri about going home. She told him that he had her permission to go home whenever he wanted, that we would all be fine. In the meantime we wait and serve and draw closer to each other as we help him through this transition. I am acutely aware of Heavenly Father's tender mercies as we perform each task and as each day presents it's self. I am ever grateful for the Plan of Salvation and my understanding of this process. We don't know everything but what we do know is of great comfort.
Once there it was determined that he was severely dehydrated, had bacteria in his blood and a very enlarged, bleeding prostate. He was listed as a "comfort care" patient which means they were more concerned about keeping him comfortable than prolonging his life. There was so much blood in his urine that they did a procedure to correct that on Friday and he was discharged on Saturday.
It was my intention to call Hospice and find out if we qualified for help last Monday but the hospital stay took care of that for me. They were very nice and informative. There was no question that he qualified so they took care of everything. A hospital bed was ordered and Scott, Rick, Terri and Katy got the living room all set up and ready for Dad's return.
He came home on Saturday afternoon and the Hospice coordinator came to make sure we had everything we needed and to tell us more about how it all works. Scott, Terri, Katy and I had a quick on the job training as no one else was coming to help until tomorrow (Tuesday). We had to empty the catheter bag, clean up the poo, keep dad from trying to get up, turn him every few hours, try to get him to eat/drink, keep him from fidgeting with the catheter, convince him to keep what little clothing he had on, adjust him in the bed etc. The four of us were so proud of ourselves when we realized we could do all of this AND change the soiled sheets while he was still on the bed. Maybe one reason he was in the hospital so long was for us to observe how to do some of these things.
Terri once said (when she moved in), "I will do anything but I won't wipe the man's butt!" Well, she has very lovingly and gently done exactly that. Last night it took all 3 of us girls to clean him up, we sent Scott in to help Erica make her top bunk bed. The men in our family are a tad squeemish. She has come so far in her ability and understanding of her role as caregiver. It has all been more than we imagined but if we don't stress on the long term and take one day at a time we'll do fine. It makes it easier because Dad is not at all mobile so we no longer have to worry about him leaving the house or falling.
I've had to explain several times that although Mom is very aware that she is 80, she's not aware that her thought processes are at about 9 or 10. She can't really help much at all in Dad's care but she does keep him company and can alert us if he comes around. She's doing well enough under the circumstances.
As I read about the last stages of life I see that he is in the eleventh hour. This may last a few weeks or a few days but the indications are all clearly there. It's funny because one of his greatest fears was that he would divulge sensitive information about his past military service. The reality is the only thing he seems focused on is his years at the storehouse/cannery. He talks, somewhat incoherently, to an unknown audience and we've come to understand that we don't need to respond because that confuses him. He recognized me this morning. My cousin's daughter Jessica came to visit and for a brief few minutes he talked with her and seemed to genuinely connect with her.
He's not eating or drinking much of anything, which is part of the process. I think today we may have gotten a whopping 200 calories in him. He has to take an antibiotic twice a day with food so we try to get him to eat a few bites of egg or pudding to help with that. We don't force the issue...we can't. Once in a while his sense of humor shines through the dark veil of his mind. Yesterday a lot of family came over so Scott went home and brought over 4 of his baby bunnies (he has 17 of them). I held one up to Dad and said look how cute. He looked at it a few seconds and said, "wait a little while and he'll be lunch!".
I don't remember if it was yesterday or this morning but he said something to Terri about going home. She told him that he had her permission to go home whenever he wanted, that we would all be fine. In the meantime we wait and serve and draw closer to each other as we help him through this transition. I am acutely aware of Heavenly Father's tender mercies as we perform each task and as each day presents it's self. I am ever grateful for the Plan of Salvation and my understanding of this process. We don't know everything but what we do know is of great comfort.
Friday, April 10, 2015
Things are winding down....
This has been a hard couple of days. Yesterday I went to pick up the parents to take them to the dentist. By the time we got there (about a 20 minute ride) dad was dozing in the front seat. I parked the car and went around to open his door and help him out. He woke up and was not the least bit coherent, looking all around like he was confused and not focusing on anything. He was obviously not in the present so I ran into the dentist's office to tell her that he wouldn't be coming in. It was difficult to get him situated back in the car because he wasn't able to help. I waited in the car with Dad while mom went in and got her teeth cleaned. He slept, fitfully until we got home. One issue is that he has a lot of saliva so if he is leaning forward he drools really bad, if he is leaning back he tends to choke on the accumulation. I kept looking over to make sure he was ok. He never fully woke up until we pulled up in the driveway.
We got him home and he was so out of it that he couldn't get out of the car. I called Katy to come help me. It took us both about 20 minutes just to get him into his walker so we could push him into the house. The whole time he is not focusing and not responding to anything. Once we got him into his chair we called 911 because although he has had these episodes before, they usually only last a minute or two. This was going on about 90 minutes at this point. I kid you not, 2 seconds before they knocked on the door he put both hands up to his head and snapped out of it. He was somewhat aware that he had been out of reality for a while but no idea for how long. The EMT's asked if he wanted to go to the hospital but he said there was nothing to be gained by it so after making sure his vitals were all normal they left. We were instructed to put his "do not resuscitate" order in an envelope and tape it to the fridge. They explained that there's a difference between 'treating' a problem and 'resuscitating'. They will attempt to treat a problem like choking, shortness of breath, but once a person seems to be gone, they won't try to revive them but they need to have the order in hand.
It's becoming harder as he falls more frequently. Although he was fine last night and sat at the table for dinner, he fell on the way back to his chair (yes he was using his walker). Terri said he fell twice today. This is a question his neurologist asks at each visit..."is he falling more frequently". Up until the last week or so the answer was always no. Terri said the second time he fell she had to "talk him back" in order to get him to help her get him up. She has a neighbor she can call and she can always call Scott who can get there faster than we can if she needs more help.
He said last night that Saint Peter was going to approach him one day soon and tell him "to pack your bag, it's time to report for a change of duty".
We got him home and he was so out of it that he couldn't get out of the car. I called Katy to come help me. It took us both about 20 minutes just to get him into his walker so we could push him into the house. The whole time he is not focusing and not responding to anything. Once we got him into his chair we called 911 because although he has had these episodes before, they usually only last a minute or two. This was going on about 90 minutes at this point. I kid you not, 2 seconds before they knocked on the door he put both hands up to his head and snapped out of it. He was somewhat aware that he had been out of reality for a while but no idea for how long. The EMT's asked if he wanted to go to the hospital but he said there was nothing to be gained by it so after making sure his vitals were all normal they left. We were instructed to put his "do not resuscitate" order in an envelope and tape it to the fridge. They explained that there's a difference between 'treating' a problem and 'resuscitating'. They will attempt to treat a problem like choking, shortness of breath, but once a person seems to be gone, they won't try to revive them but they need to have the order in hand.
It's becoming harder as he falls more frequently. Although he was fine last night and sat at the table for dinner, he fell on the way back to his chair (yes he was using his walker). Terri said he fell twice today. This is a question his neurologist asks at each visit..."is he falling more frequently". Up until the last week or so the answer was always no. Terri said the second time he fell she had to "talk him back" in order to get him to help her get him up. She has a neighbor she can call and she can always call Scott who can get there faster than we can if she needs more help.
He said last night that Saint Peter was going to approach him one day soon and tell him "to pack your bag, it's time to report for a change of duty".
Sunday, March 29, 2015
Things you can't anticipate...
Here it is the end of March and I didn't even check to see when my last post was. Life With The Parents gets more interesting/problematic as time goes by. It seems, here lately, that every day has more challenges than we've had in the past.
The symptoms of Dad's Parkinson's are accelerating. He doesn't exactly hallucinate but he's not always in the present. As the disease progresses the brain allows the mind to take snippets of things that happened in the past, one from this situation one from another, and put them together to create a whole new reality for the patient. A few days ago it was a story about my son being set up for something that was going to "come down and cause trouble" maybe landing him in jail and certainly to be in the newspaper. He wanted me to come over and talk about it because he didn't want so say anything over the phone. Last night he insisted that he needed to call his former military bosses and let them know he has Parkinson's because they might not want him working anymore. He hasn't worked for them in 30+ years. Most of them are either retired or passed away. It took a lot of talking, coaxing and convincing to get him to leave it alone.
Each day is different from the one before. Usually, by the next day, yesterday's problems are forgotten and new ones crop up. But not always. Last week he had it in his head that someone from Salt Lake was going to send someone from the Philadelphia Bishop's storehouse to get his safe. We almost didn't get through that one without a phone call. The next day he didn't clearly remember what the issue was but that his safe was still there.
I had to take him to the doctor last month because of the edema in his feet. It was pretty bad so they have us wrapping his feet and legs during the day and this next week we hope to graduate to compression socks. It's hard because if he would walk more and move around more the problem wouldn't be so bad. The progression of the Parkinson's makes that impossible.
He's very frail and has lost almost 10 pounds in the last 3 or 4 months. He eats less and less. Terri makes sure he gets his fruit/vegetable green drink every day but that's as much nutrition as he gets. Some days it surprises us that he makes it through the night and others he seems fairly cognizant and almost chipper. He talks a lot more about "as this winds down" and last night he said "there are worse things than being dead". When my daughter looked in on him this afternoon, because it was almost 1:00pm and he still wasn't up, he popped his head up and said "I'm still here!"
I feel bad for Mom because she isn't mentally up to par and she's totally at a loss when he wants to make these weird phone calls. She just doesn't know how to handle the situations so she gets a little panicky. She is really weighed down with trying to take care of him but not really being able to do much.
So here ends another briefing of what's up with us. We continue to plug along taking each day as a new day and thinking mostly in terms of just one day at a time.
The symptoms of Dad's Parkinson's are accelerating. He doesn't exactly hallucinate but he's not always in the present. As the disease progresses the brain allows the mind to take snippets of things that happened in the past, one from this situation one from another, and put them together to create a whole new reality for the patient. A few days ago it was a story about my son being set up for something that was going to "come down and cause trouble" maybe landing him in jail and certainly to be in the newspaper. He wanted me to come over and talk about it because he didn't want so say anything over the phone. Last night he insisted that he needed to call his former military bosses and let them know he has Parkinson's because they might not want him working anymore. He hasn't worked for them in 30+ years. Most of them are either retired or passed away. It took a lot of talking, coaxing and convincing to get him to leave it alone.
Each day is different from the one before. Usually, by the next day, yesterday's problems are forgotten and new ones crop up. But not always. Last week he had it in his head that someone from Salt Lake was going to send someone from the Philadelphia Bishop's storehouse to get his safe. We almost didn't get through that one without a phone call. The next day he didn't clearly remember what the issue was but that his safe was still there.
I had to take him to the doctor last month because of the edema in his feet. It was pretty bad so they have us wrapping his feet and legs during the day and this next week we hope to graduate to compression socks. It's hard because if he would walk more and move around more the problem wouldn't be so bad. The progression of the Parkinson's makes that impossible.
He's very frail and has lost almost 10 pounds in the last 3 or 4 months. He eats less and less. Terri makes sure he gets his fruit/vegetable green drink every day but that's as much nutrition as he gets. Some days it surprises us that he makes it through the night and others he seems fairly cognizant and almost chipper. He talks a lot more about "as this winds down" and last night he said "there are worse things than being dead". When my daughter looked in on him this afternoon, because it was almost 1:00pm and he still wasn't up, he popped his head up and said "I'm still here!"
I feel bad for Mom because she isn't mentally up to par and she's totally at a loss when he wants to make these weird phone calls. She just doesn't know how to handle the situations so she gets a little panicky. She is really weighed down with trying to take care of him but not really being able to do much.
So here ends another briefing of what's up with us. We continue to plug along taking each day as a new day and thinking mostly in terms of just one day at a time.
Wednesday, January 21, 2015
Time Continues....
When you are younger, and I'm talking 20s and 30s, you don't think of mortality too much. One tends to be busy with all things of life and living. When one is older (like 62ish) as I am you begin to see things totally different.
Dad has often said that he's had a very significant event in which he was told ..."you've spent your life teaching people how to live, now it's time to teach them how to die." He also says that "God gave me life and He'll decide when it's time to take it back." Except for the Parkinson's he's managing well enough and on good days he's very gracious and appreciative of the least little thing anyone does. However, age and circumstance can sometimes make people cranky as they get older and he's no exception. Neither is my mother on the other hand! They fuss at each other like they NEVER did before he got worse and she had her stroke. Case in point..."You've got hearing aids I spent $2,000.00 for and I still have to yell and repeat myself" he said. "Well, I don't have them in!!" she said. We laugh because it's easier than crying and if we didn't find the humor in these day to day things we would all be crazy and in very expensive therapy.
I was busy getting ready to leave for a meeting last night and hurrying to get Rick's dinner ready when the phone rings. It was Dad, letting me know that he got a piece of mail offering him as much as a $450,000 loan @ 3.5% interest. Sounds like junk mail to me I said. Just thought you might find that interesting he said. That was all... Sometimes this happens several times a day and sometimes we can go two or three days without having to explain plain and simple things. I got a call from an attorney about something that happened about 46 years ago. I felt bad explaining to Dad what the issue was (he was a principle person of interest) because he wrote the book on such matters back in the day.
We, my daughter and I, have had to tell my mom that she has to do something about the way they eat. Terri makes dinner and sees that Dad gets his green (plus fruits and vegetables) drink every morning but mom still makes "breakfast" for her and Dad. This meal is usually eaten ANYTIME between 10am and 2pm. It also can consist of anything from a bowl of cereal, bacon, sausage and eggs, OR in the case of last week 3 jelly donuts each!!!
This all makes me think that when they go...I'm next! I try to view things in a positive manner knowing full well that what they are going through now could very well be me in a few years or less. I think about how and what we'll do down the road. Living with one of my children is an easy thought but would they want us. We live in a place that they would find hard to manage and not convenient to anything so having one of them move in with us isn't an option. I still think a tiny house on my son's Virginia Beach property is the way to go! Since we can't afford where I'd REALLY like to go.....
Dad has often said that he's had a very significant event in which he was told ..."you've spent your life teaching people how to live, now it's time to teach them how to die." He also says that "God gave me life and He'll decide when it's time to take it back." Except for the Parkinson's he's managing well enough and on good days he's very gracious and appreciative of the least little thing anyone does. However, age and circumstance can sometimes make people cranky as they get older and he's no exception. Neither is my mother on the other hand! They fuss at each other like they NEVER did before he got worse and she had her stroke. Case in point..."You've got hearing aids I spent $2,000.00 for and I still have to yell and repeat myself" he said. "Well, I don't have them in!!" she said. We laugh because it's easier than crying and if we didn't find the humor in these day to day things we would all be crazy and in very expensive therapy.
I was busy getting ready to leave for a meeting last night and hurrying to get Rick's dinner ready when the phone rings. It was Dad, letting me know that he got a piece of mail offering him as much as a $450,000 loan @ 3.5% interest. Sounds like junk mail to me I said. Just thought you might find that interesting he said. That was all... Sometimes this happens several times a day and sometimes we can go two or three days without having to explain plain and simple things. I got a call from an attorney about something that happened about 46 years ago. I felt bad explaining to Dad what the issue was (he was a principle person of interest) because he wrote the book on such matters back in the day.
We, my daughter and I, have had to tell my mom that she has to do something about the way they eat. Terri makes dinner and sees that Dad gets his green (plus fruits and vegetables) drink every morning but mom still makes "breakfast" for her and Dad. This meal is usually eaten ANYTIME between 10am and 2pm. It also can consist of anything from a bowl of cereal, bacon, sausage and eggs, OR in the case of last week 3 jelly donuts each!!!
This all makes me think that when they go...I'm next! I try to view things in a positive manner knowing full well that what they are going through now could very well be me in a few years or less. I think about how and what we'll do down the road. Living with one of my children is an easy thought but would they want us. We live in a place that they would find hard to manage and not convenient to anything so having one of them move in with us isn't an option. I still think a tiny house on my son's Virginia Beach property is the way to go! Since we can't afford where I'd REALLY like to go.....
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