Headnote
It’s been a year. And the help from the posters here has been immeasurable. I want to keep my original posting of the events of that time available - mainly for selfish, personal reasons. But also to tell my story. So I’m going to repost a few threads from the old boards.This is partly a memorial and partly a tribute to those who helped me though probably the hardest couple of weeks of my life. So pretty please treat it as such. I don’t need further condolences - the time for that has passed. But I also don’t want to forget these events. Hence, the reposting to hopefully keep these writings for posterity.
There is no reason to respond, although further responses are welcome. My only request is that you read through all of these reposts before responding to any of them. Lots of questions were answered, some in the thread and some in later threads. I’m not sure how many there will be, but there will be several.
There are also several side issues brought up. I’m leaving those in place as originally posted. If you want to discuss one of those side issues, I’d ask that you please start a new thread.
Author: ptheland
Subject: Well, fiddlesticks
Date: 11/8/2021 5:51 PM
No. of Recommendations: 57
That’s about all I can say that will pass the TMF nanny filter.
Short story: my wife passed away on Saturday.
Longer saga for those that might want to know. (And to write it all down for my future self.) I think I left off with my wife transferring to a Skilled Nursing Facility, aka a SNF or SNiF. She finally arrived from the hospital at something like 8:30 or 9:00 in the evening. I was there to meet her and to help get her settled in. We were able to have a little talk to explain where she was. Then, since it was long past visiting hours, I left.
Was back to visit the next day, and was there from about 1:00-3:30. I think this would be Thursday, although the days are mushing together in the fog of activity and lack of sleep. She was still in a bit of pain, although the Tylenol was keeping it manageable. We had a nice visit, and I brought her iPhone so she could play her games to help pass the time. She also texted me on my way home to remind me to feed the fish.
Took care of a few things around the house, then my son and I decided to go pick up something for dinner. Cooking has been out the window once she went in to the hospital. We had just left the house when I got a call from the SNF that she was acting erratically and that I needed to come there to help calm her down. I told them it would take me a while to get there, as I needed to feed our son (and myself, lest I arrive in the midst of a severe hangry mood.) Also needed to have someone come stay with him, as I didn’t know how long I’d be. My parents and brother did yeoman’s duty at this job over the next few days.
So off to the SNF to see what’s up. Arrived to find my wife in the midst of a severe delirium. She was seeing things no one else could see. Any verbalizations were nonsense, with a couple of rare exceptions. The staff let me know what they had tried, and that eventually they had to have someone sit with her. I took over from the patient man who had been watching her and keeping her safe, and quickly determined that she needed to get back to a hospital. The staff went to work on that task, and I kept the family updated on what was happening. My sister decided to join me at the SNF for support, which was greatly appreciated.
After a bit of futzing around by the staff trying to arrange transportation, they finally asked me if they should call 911 for help. Well, yeah. Duh. I thought you folks had some experience with these things and should know when you’re in over your head and need to call in the cavalry. EMS arrived and got her transported to a hospital - a different one from the previous one, mainly because that was the one currently accepting ambulance traffic and it was just barely more than a mile away. The EMS briefly considered the trauma center because of her head injury, but their consultations with whomever they consult with decided that wasn’t necessary.
My sister and I quickly grabbed the personal effects from her room (really just her cell phone and CPAP machine) and followed the ambulance to the hospital. There was a brief wait outside the ER while the staff evaluated her condition, then they let me go in with her. Sorry, just one visitor at a time. My sister waited outside, eventually opting for her car, as it was pretty chilly outside, and we could stay in touch just as well there. I did my best to comfort her in her delirium, while the initial tests were performed. They also took her out for another CT scan to see if there were any changes happening there.
I need to pause a moment. I’m not sure if I got the full update here. I misunderstood her initial diagnosis from her fall. She suffered a skull fracture in the fall, not a fracture of a vertebrae. She also had a bit of air in the brain cavity. That can be a problem as it can mess with the pressure inside the brain. Her case appeared to be stable, as the volume of air didn’t change between two CT scans she had at the first hospital. It is changing (really increasing) volume that requires intervention. Smaller amounts - as she had - can simply be monitored as the gasses are absorbed into the blood stream.
Back to the ER.
The CT scan at the second hospital didn’t show any changes to explain her change in mental state. But the fever she had would explain it. That raises the question as to what infection she has to cause the fever. Hopefully, the tests ordered by the ER doctor will identify the infection. In the mean time, she gets a broad spectrum of antibiotics to start working on the infection. She also gets a quick chest x-ray which reveals pneumonia. And there’s one other test the ER doc want to run, but needs my permission. With a skull fracture, there’s a chance the blood/brain barrier is breached and meningitis can set in. So he wants to do a spinal tap. In her current state, she will require a light anesthesia for the procedure. But I have given them a DNR order. So they would need to do the anesthesia without intubation. There are risks to that. But her state is really bad and she had told me many times that she did not want to be intubated, unless it was for some surgery. The ER doc lets me know the risks, but I do not change my position. So he does the tap, gets the fluid, and there are no problems from the anesthesia.
With everything done that can be done at the moment, it’s time to move her to the ICU. That’s accomplished at about 1:30, I give her a kiss and head home.
While all this was going on, my parents and brother are at my house watching and entertaining DS. And we’re all staying in touch via text message. At some point, DS is ready for bed, and the parents decide they should do the same and head to their home. My brother crashes on the couch, which is where I find him when I get home. And my sister has been outside in her car this whole time, waiting at the ready if I need her further.
I am awoken from my fitful sleep just before sunrise with a call from the hospital. DW’s oxygen saturation is dangerously low and the nurse suggests I get there ASAP. So I call my brother and get him headed back to join DS. Then I get DS up, we have a conversation about his mom, and I’m off back to the hospital.
When I get there I’m kind of surprised by what I see. DW’s oxygen level is actually quite good - high 90s. (Yes, I read the monitors in the room.) Talk to her nurse and find out it fell into the 50s overnight. They’ve got her on a bi-pap machine flowing something like 70% oxygen. No wonder her level is back up. She’s stable, but in worse shape than yesterday. As the day rolls on, she looks a bit like she’s improving a bit. They get her off the bi-pap and on to high-flow oxygen via a nasal cannula. My sister has arrived back at the hospital, so I decide to head home for a few minutes and let her in to see DW. She had seen DW’s condition back at the nursing home, so her extra set of eyes are appreciated to see how DW’s condition has changed.
Back at home, the parents have arrived to relieve my brother and let him get to work. I shower and eat, we all talk a bit about DW’s condition. The paid caregiver arrives for her usual shift, so the parents head back home for a nap. They will come back after the caregiver’s shift, and brother plans to return in the evening, if needed. I head back to the hospital.
There, I see little change. They have learned that when DW is asleep, her sleep apnea kicks in and the bi-pap is needed. When she’s slightly more awake the cannula is fine. I send sister back home, where it’s much easier to work than in the back seat of her car. Things are much more stable than they were in the morning. I get an occasional bit of lucidity with DW. For example, in her delirious states, she would pick at the pulse-ox sensor on her finger. Those things get irritating after a while. But in her lucid moments, I can pick her hand up so she can see what’s there, and she seems to recognize it and leave it alone. She is very weak from all the activity during her delirious states, plus she has eaten very little since she was first admitted to the hospital several days ago. I nap on and off myself. Eventually, the visiting hours reach their end for the day, and I head home.
There’s some food waiting for me, along with my whole family. Both are extremely appreciated. Everyone is exhausted. DS is helped to bed, and I do likewise.
The next call comes again at something like 2:30 in the morning. DW’s breathing has turned very labored. Out go the calls for help again. Back to the hospital. Multiple conversations with the doctor and nurses. When time for the regular rounds comes again, I talk to the team. There is nothing left to do. I tell everyone that it’s time to say goodbyes. Dad comes in to relieve me so I can go home and talk to my son. We all help him, and he decides he doesn’t want to see his mom like this. I can’t say I blame him. And we all support his decision to stay home. There’s some rotation around between home and hospital to get everyone in. In the midst of all this, a diagnosis of meningitis is finally made. And then the hospital’s infection control procedures kick in.
They want to move her to a different room. And I don’t disagree with their protocols. They need to keep their staff and patients safe. But the room change means that my sister - the only one remaining to get in, the one who has been my on-scene support through all of this - can’t get in. And it’s not like DW hasn’t had meningitis this whole time. The sample was pulled a day and a half ago. I am ready to sign the order to withdraw the bi-pap which is doing all of the breathing at this point. But I can’t - I won’t - do that until my sister is here. So we wait. And wait a bit more. Until I can’t wait any longer. I can’t put DW through any more of this, although she is most likely unaware at this point. I let the nurse know it’s time. She prepares the paperwork, the doctor arrives shortly to have one more reassuring chat and to do his part. And somehow, that is enough to get my sister in. Just in time. Had both my brother and sister there with me and DW at the end. I can’t thank them enough for their support through all of this ordeal.
Now it’s on to the next bit of caregiving. Our son needs me as much as ever. We have help lined up while I recuperate from my surgery. DS’s circle of friends are going to bring us dinners for the next several days (likely arranged by my brother’s wife, who has the best parts of that MidWestern spirit running through her.)
I have to admit that there’s a bit of a feeling of freedom. There are several things that I wanted to do, but felt I couldn’t because DW needed my help. I can now do those things. But there’s also the clear sadness that DW isn’t here to enjoy them with me. I almost have a feeling of guilt even thinking about that freedom. But I know she would want me to carry on. I’m sure that guilt won’t last, even though the sadness of missing her will always be there.
Now it’s on to the mundane. My family kept us both busy yesterday, so I’m taking care of arrangements today. I thought nursing homes were bad. The death industry is up there giving them a run for their money. But I will get through this and get to the other side of things where I can spend a bit of time on my own grief. Not that grief hasn’t been breaking through from time to time, of course. Just writing this all down is helping in that process.
This is way too long, so I’ll stop now with thanks to everyone for your immediate embrace of support for a newcomer. And I’ll be staying around. I’m still a caregiver for the best son a guy could hope for. The caregiving issues haven’t gone away, they’ve just shuffled around a bit.
–Peter
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Author: YewGuise
Date: 11/8/2021 6:09 PM
No. of Recommendations: 1
(((Peter)))
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Author: 2gifts
Date: 11/8/2021 7:30 PM
No. of Recommendations: 1
Oh, Peter, I am so sorry to hear this. My condolences to you and your family on your loss. You are all in my prayers.
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Author: inparadise
Date: 11/8/2021 7:37 PM
No. of Recommendations: 1
(((Peter))) You are so blessed to have your family at your side.
IP
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Author: alstroemeria
Date: 11/8/2021 7:43 PM
No. of Recommendations: 1
Omygosh, Peter. Hugs for you and your son.
Author: Borgney
Date: 11/8/2021 7:54 PM
No. of Recommendations: 1
I’m so sorry Peter.
B
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Author: sheila727
Date: 11/8/2021 8:38 PM
No. of Recommendations: 5
This is way too long,
No. It’s as long as it needs to be.
I am in tears. It’s been such a brief time since our friendship has begun, but this group enables a kind of intimacy that so quickly and easily takes root. And this relationship gives birth to caring—such a great deal. And I am in tears!! Shock and tears.
What a swirling melting pot of emotions, including recognizing a sense of freedom on your horizon now. But it comes at the cost of loss. Just remember that loss and grief progress through a profound evolution. It takes time, and much of it happens subterraneously. We don’t realize at first that we are making progress at integrating our loss at a very deep level until they begin to percolate up. So trust in your ability to take care of yourself. It will happen.
So glad that you discovered this group, and will continue to be one of us!
((((Peter))))
=sheila
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Author: MissEdithKeeler
Date: 11/9/2021 8:55 AM
No. of Recommendations: 1
I’m very sorry for your loss.
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Author: jrdown
Date: 11/9/2021 9:23 AM
No. of Recommendations: 8
Peter ~
Many hugs of understanding are heading your way.
I totally understand the sadness and yet the freedom.
You are not bad for feeling that way. I had the same
thoughts when my husband died and then my dad. I took care
of my husband for many years with his 3 bouts of Cancer
and then my dad for 5 years which ended up as end stage
Alzheimers. I never got out of my pajamas for 4 days after
Dad died and got the first full night’s sleep in a very
long time.
You have been a loving husband and caretaker.
Robyn
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Author: 1poorguy
Date: 11/9/2021 12:19 PM
No. of Recommendations: 1
I have to admit that there’s a bit of a feeling of freedom.
I don’t have that, precisely. 1poormom is in an AL facility. They take care of her. But it is somewhat conflicting to see her decline and think “it would be more merciful if she died peacefully”, and yet I’m the son and shouldn’t want to see her die in any way. Maybe I read it wrong, but it sounds like you may have had that conflict too.
I don’t have an answer. I guess it’s something we have to live with as part of the human condition.
Sorry for your loss. Hopefully you can also find peace in this situation. It’s not clear to me how much your son understands, but I’m sure it’s an added difficulty for him.
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Author: Howie52
Date: 11/9/2021 1:11 PM
No. of Recommendations: 3
Condolences on your loss.
Howie52
We all come to terms with loss in our own ways and with our own perspectives.
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Author: nagdabbit
Date: 11/9/2021 4:16 PM
No. of Recommendations: 1
So very sorry…
I hope that you get some much needed sleep.
You have to take care of yourself as well.
nag
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Author: WendyBG
Date: 11/9/2021 5:58 PM
No. of Recommendations: 2
Peter, you have my deepest condolences. Prayers for strength, healing and peace for you.
Wendy
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Author: syke6
Date: 11/9/2021 6:52 PM
No. of Recommendations: 1
My condolences.
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Author: HohumYNWA
Date: 11/9/2021 7:56 PM
No. of Recommendations: 1
Peter,
sorry to hear the sad news. Wishing you and your son the peace and comfort in this time of major upheaval.
HohumYNWA
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Author: Neuromancer
Date: 11/9/2021 8:09 PM
No. of Recommendations: 1
Peter, I am so sorry for your loss. It’s never easy. Having such family support is a gift.
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Author: flyerboys
Date: 11/10/2021 4:05 PM
No. of Recommendations: 5
Peter, a beautifully written narration that conveys the grief and pain by walking so carefully around it.
Thank you, and keep going.
David flyerboys
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Author: mschmit
Date: 11/10/2021 4:07 PM
No. of Recommendations: 1
Peter, sorry for your loss.
I can’t imagine having to go through this.
Mike
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Author: sheila727
Date: 11/11/2021 10:40 AM
No. of Recommendations: 1
Peter — how are you and your son?
((((both of you))))
=sheila
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Author: ptheland
Date: 11/11/2021 3:07 PM
No. of Recommendations: 6
Peter — how are you and your son?
We’re doing OK. And I should do a bit of follow up on the thread. So this is kind of a roll-up response to a few different folks here.
First off, I thank all of you for your well wishes and condolences. They are sincerely appreciated. While I have the best in-person support system one could hope for, it’s also great to have a semi-anonymous set of friends to talk to as well. There’s something about talking to people who have gone through the same things that is invaluable.
IP and a couple of others have mentioned the blessing of family. And you are exactly correct. I am fortunate that my close family (parents, siblings) is so supportive. I know that not all families are like that, and I am extremely thankful for their help and support.
Robyn–Thank you for that understanding of the freedom and sadness. Losing the one you’ve been caring for for so many years is hard. And I haven’t fully come to grips with it yet. I still have my son to care for, I need to take care of the final arrangements for DW (in process at this point, just waiting for the bureaucracy to work through things), and I had my hernia surgery to get through. ***
1pg - you mentioned my son. He understands quite well - as much as a 21 year old can understand life. From my perspective, there are lots of things still to learn, but that’s true of most young adults. His condition is mainly a physical one. He mental faculties are reasonably sharp, although he does have some trouble with reading. Losing his mother is most certainly as difficult for him as it is for me. We’ve been talking about it a lot when it’s just the two of us. And he’s been talking to friends and family as well. In the long run, I’m sure he will be fine, but this is a rough patch in life for him.
But it is somewhat conflicting to see her decline and think “it would be more merciful if she died peacefully”, and yet I’m the son and shouldn’t want to see her die in any way. Maybe I read it wrong, but it sounds like you may have had that conflict too.
Yes, that was exactly my conflict. Until her fall, she was very much alive, but not doing a whole lot. She usually declined invitations to get out with the larger family, even after a bit of prodding. She would go for the big holidays and birthdays and such. But not for the more impromptu stuff - “hey, let’s get together for dinner tonight”. In many ways, she was alive, but not living. She was doing less and less for herself, and becoming more dependent on others, which she didn’t like. And it was adding to my burden as well. She was to the point where she couldn’t really do anything for our son. So all that she was doing had fallen on me, in addition to needing to do more and more for her. I didn’t really mind the work, but I did sometimes resent the amount of time it consumed. I had very little time for my own interests.
–Peter
*** On the hernia surgery, that was Tuesday and finished uneventfully. I’m feeling much better today. It’s been 24 hours since I’ve taken any of the codeine the Dr. prescribed for pain. My head is much clearer now, and there is only a bit of an ache at the surgery site, no real pain. Good ol’ Tylenol is sufficient for now.
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Author: jrdown
Date: 11/11/2021 4:03 PM
No. of Recommendations: 4
Peter;
Thank you for the update and we are with you in spirit.
I think you are doing wonderfully well considering all that
you have to handle and that you are on the mend from surgery.
As long as there are things to be done to finalize your wife’s
funeral/life service, or whatever you have decided to do, your
mind will be occupied. After it is over and you get back to
your new normal life then don’t be surprised if you are feeling
sad. This could come and go at any time and is very normal. There
is no right and wrong way to grieve and deal with it.
You are in my thoughts as is your son. All my best to you.
Robyn
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Author: sheila727
Date: 11/11/2021 5:04 PM
No. of Recommendations: 2
Very glad to hear from you. Relieved that your hernia surgery is now past tense. I couldn’t remember exactly when it was to be.
So much to deal with right now, with making the final arrangements, helping your son—emotionally, physically, the presence of your family…and I think it provides some space, in a way, before the full weight of life forever without DW is the dominant reality—both the loss, in so many dimensions, and the freedoms, and I’m sure both relief and a sense of guilt attached to that. It’s good to have that bit of transition time right now. I’m so glad that you and your son are so close. And he is also, in a way, DW’s continued presence in your life.
It’s of such immeasurable value that your son can talk. I had a cousin who was born with cerebral palsy. He was a year older than I was. He was never able to do anything for himself, including talking. My aunt and uncle put him in an institution when he was 7 or 8, I think it was. They visited him and spent time with him regularly. He was very bright and emotionally responsive, and eventually able to communicate—I think it was by pointing to letters to spell words. He lived into his 50s, decades longer than the doctors had predicted. And the family gathering the evening before his funeral was at my apartment. Not meaning to take the spotlight here, but I’ve been thinking about Chrissy a great deal since your initial post here. And I’m so happy that your son’s limitations are only physical—and he can talk about his feelings and thoughts!
You are both in my thoughts and prayers. So lucky you have your family close by—and close. Life has thrown you such a curve, and they will make a difference.
And we are here for you too.
=sheila
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Author: tconi
Date: 11/11/2021 8:12 PM
No. of Recommendations: 3
Whatever the right words are, let us pretend I have written them.
peace & whirlwind weeks
t
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Author: ptheland
Date: 11/12/2021 1:39 AM
No. of Recommendations: 16
Whatever the right words are, let us pretend I have written them.
I can do that. There are occasions that seem to escape words. Yet this flawed medium of the internet is based on words. It cannot properly convey a hug or a tear or a simple handshake.
To all, I appreciate the thoughts even when the words seem clumsy and wrong.
I’m reminded of a story of a young child who went over to his neighbors house shortly after his wife’s passing. When him mom asked him what he did, he said he sat next to him and helped him cry.
You all have helped me cry. Thank you.
–Peter
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Author: alstroemeria
Date: 11/12/2021 6:01 AM
No. of Recommendations: 1
I’m visualizing you and your son taking a relaxing, fun vacation at a favorite–or new–spot next year. Perhaps you can bring an aide or favorite relative to help care for him. Or maybe more of your family can come, sharing joy, memories, and helping your son.
{{{hugging both of you}}}
I hope your freed-up time can be devoted to your health & happiness…nature walks, uninterrupted reading, relaxing massages…
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Author: GuildWars2Queen
Date: 11/14/2021 3:08 PM
No. of Recommendations: 1
I’m very sorry for your loss. (((hugs)))
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Author: ThyPeace
Date: 11/16/2021 11:22 AM
No. of Recommendations: 3
It’s been eight days since you wrote, a tumultuous and incredibly stressful time with an ending that is awful and merciful and mundane and anything-but mundane. I am so sorry.
And eight days on, I see that you are still moving along your path. Surgery recovery, taking care of your son. I suspect there are also waves of grief that feel overwhelming – and that give you a little time to breathe before they wash over you again. Keep taking those deep breaths when you can. And all the other mundane self-care things – try to make motions at doing those, too. Hydrate because tears seem to use up more water than you actually lose in the process of crying. Walk outside. Sit outside in the sun. Take naps at random times. Eat foods that are gentle on you. (I had to laugh at the fridge full of leftovers. Been there, done that.)
Most of all, give yourself some grace and kindness. Do what you can, then pause and rest and think. Then do what you can again.
ThyPeace, all these words are pretty much here to say “I care. I wish you well. I hope that there is some ease for you.”
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Author: ptheland
Date: 11/16/2021 5:18 PM
No. of Recommendations: 4
And eight days on, I see that you are still moving along your path.
Yes, I keep crawling forward. I don’t know how, but I do it anyway.
Surgery recovery, taking care of your son.
This is certainly part of it. I probably should have had the hernia taken care of 2 years ago. Then I planned to get to it in May/June of 2020. But covid interrupted that plan. So finally got around to it when it seemed like hospitals were ready for more routine patient traffic. When my wife died, I decided that I couldn’t continue to put it off any longer. Putting it off wouldn’t help her. So I just carried on, so that I would be physically able to continue caring for my son.
I suspect there are also waves of grief that feel overwhelming – and that give you a little time to breathe before they wash over you again.
You know, I haven’t really had that yet. Yes, there are tears and sadness. But nothing overwhelming. I let those times happen, and then I keep moving on. They haven’t overwhelmed me. And maybe they never will, although I doubt that. I think that time just hasn’t happened yet.
And all the other mundane self-care things – try to make motions at doing those, too.
I’ve been trying to do more than just make motions at it. The surgery is one concrete step in self care, and it kind of hard to ignore. The various discomforts make it hard to ignore.
Hydrate because tears seem to use up more water than you actually lose in the process of crying.
I’ve been remarkably good at this one. The last time I was this good was right after my kidney surgery over 20 years ago. (Removed one, knowing there was a growth in it. Turned out to be a benign cyst and not cancer, but it took donating the kidney to the pathologist to determine that.) I haven’t drunk this much water in several years.
Walk outside. Sit outside in the sun. Take naps at random times.
I’ve got that napping thing down pat!! 
Got up to meet the caregiver at 6 am this morning. Got DS through his morning routine, then the two of them went outside to sit and talk. I used the time to take a nap. Got another hour of sleep in.
He and I were out and about yesterday, with a pretty full schedule. He had a check up scheduled mid morning. (Got a referral to a podiatrist for a developing hammer toe, and his flu shot. Covid booster scheduled for next month.) Then we went to lunch and on to the viewing for DW. Missed my nap yesterday, so needed the early nap today.
Eat foods that are gentle on you. (I had to laugh at the fridge full of leftovers. Been there, done that.)
Yeah. That open letter was triggered by some of the worst tasting pizza I’ve ever had. There were 2 medium pizzas. We each ate a slice and decided the pizza wasn’t very good at all. I picked the pepperoni off a couple more slices and we tossed the rest in the trash. Then we had some garlic knots (much better, those) and a brownie each. Not exactly food that is gentle on you. Fortunately, I had eaten a nice cobb salad for lunch and that left me quite satisfied. So all in all, a mixed bag on the quality of food yesterday. Sunday was much better, with a roast chicken, mashed potatoes, and some steamed veggies for dinner. I’m actually looking forward to those leftovers.
Most of all, give yourself some grace and kindness. Do what you can, then pause and rest and think. Then do what you can again.
That’s pretty well sums up the last 10 days. Do something, rest, then do something more. That’s about all anyone can do.
–Peter
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Author: bosslady52
Date: 11/25/2021 11:30 AM
No. of Recommendations: 0
So sorry to hear this Peter.