etd…

It strikes me that the timing of death (and birth) are such inconvenient truths. How do we ask ‘how much longer’ when we already know, no one can say. Everyone needs to ‘plan’ around work, other life obligations, and I just wonder. No one can give a definitive answer. This is not like a sudden heart attack or stroke that takes someone out in a moment. I’m not a physician where my absence may be life threatening to someone; I’m not in a role that my absence will impact in a harsh way, too many others. Maybe just the dogs. That is hard but we’re trying to work around it, round trips and all.  But I don’t look at this as inconvenient. It is a life/work interruption, a necessary one, to be there with our loved one as they have the very last moments of their own life. Ours should not impede theirs.

This process is more lingering. More slow and unknowing. Anticipated changes to the body may not occur.  We may be watching for one thing and another thing is happening that we aren’t aware of. The best estimated time of death is most likely today, or tomorrow. Could be a few more days. It’s like waiting for the train to hit the car. It’s coming, are we prepared, have we said enough, should we have said more?

The morphine started yesterday, more for the ‘hunger breathing’ that they call it. To calm the respiratory system. Then by the evening, the 2 hour interval started, and we all know what that does to the respiratory system. Yesterday, he knew we were all there, he responded in brief, smiled when he heard Bob’s voice, and of course – his most beloved grandsons, Eric and Cory.

Here’s an article or blog about this very same issue of breathing…

While he was very grave yesterday morning to a slightly responsive in the afternoon, he asked for visitors. His immediate family – we were all there. His other angel of a niece (Chris) was there for me as much as for him, even though she visited the day before. She’s been on this ride before with her own parents, and too many others. She knows the meaning of comforting others. She knows what it means to be present, to offer support, in any way she can. She asked me what I was so afraid of. I think maybe because I don’t feel that I properly grieved my mom, that I will grieve the both of them together, and very soon. And feel the loss of both of them, together, more profoundly.

As my brother said yesterday, while we’ve already been grieving along time for my dad – and we all grieve in different ways. The nurses have each come in and told my dad how much they love him, and he heard them. They kissed his forehead. And he heard us, too.

So, if there is any family that planned on seeing my dad and saying your own goodbyes, today would be the day, earlier than later. No phone calls to him please. He won’t answer. We probably won’t either.

 

little ditties, from last summer

Dad: “Geez, I am falling apart.” 

Me: Dad, you’ve already fallen apart. They’ve just put you back together.

Dad: “Call the undertaker!”  Upon being taken by ambulance to the hospital for a suspected serious infection.

Me: Dad, we really need to find something that you are interested in, that you can spend time on and enjoy, maybe with others.

Dad: Donna, They’ve got television for that.

 

 

a new phone number pending

 

As you may have heard, my dad lost yet another cell phone last week. He’s been without a phone for a full week now and is really upset…another line of independence gone. The staff at the VA Home said they turned his room inside out to look for it, but my dad doesn’t believe that. We had as well. I was able to check w/the phone service to see last calls made or calls that came in. All were verified and it didn’t appear that someone else was using it.

In the past, his phone has been damaged, needing replacement; and lost at least 2-3x and replaced. We’ve run out of options and don’t think the small cell phone is right for him. Plus, he was going well over his 200 minute plan and sometimes his monthly bills (Jitterbug and Verizon) exceed $60…

The VA home had told us about a service called Home Connect that basically uses wireless with a charged handheld phone. After too much time learning about this service and standing around waiting for help, etc. we are re-connecting him to the outside world.

His new number will be 815-954-4627 but may not be activated until Monday or Tuesday. He’s going nuts without a phone and a way to contact me, and us to contact him. He is allowed to use the nurse’s station portable phone but for some reason finds excuses not to. It’s hard on us to, as I have to interrupt the nurses throughout the day/evening to check in on him.

They believe his phone fell in his trashcan. If it had been picked up with laundry (sheets, clothes) it would have been sent off to a prison where the laundry service is contracted. We’d never see that phone again! But it hasn’t been used so we’re not worried. My dad had a lot of photos on his phone that I will try to retrieve.

On  a lighter note, he got his haircut yesterday and hung out w/the barber’s dog Midas – who happens to be his therapy dog (Golden Retriever) that is assigned to him through Hospice, but it’s the barber’s dog so they were already acquainted. Seriously, pets bring him so much joy. I created a private Facebook page for him, simply to share dog and cat videos which he finds hilarious.

65 years ago today…

 

65 years ago today…My parents were married. Fifteen years ago this week (9/8), we threw a great big party for them with about 100 family and friends to celebrate their 50th anniversary.

Today is bittersweet. I don’t remember last years’ date being as sad as today. Maybe because my dad has fallen so ill twice in the past month and doesn’t appear to be recovering with the strength and fight he seemed to have in him for so long.

Today, he remembered as we knew he would. I brought him a blanket that was given to them for their 50th by my cousins (Chris & Lou) that was personalized and embroidered for that big day. The only good it was doing here was a place for Sassy the cat to leave her mark and her hair. Tonight, it is at the foot of my dad’s bed.

He seemingly isn’t too social these days or want much company – maybe just ‘us’. His voice is even more raspy which is likely the PD. There are a lot of changes going on at the VA Home, including staffing, room swaps, people moving and all too often, people dying. Expected or not, frequent or not, it does seem to upset everyone each and every time; knowing that they’re most likely not going to ever leave there; knowing that they will die there or at the closest hospital. Sometimes, it’s too much to think about.

In any case, my parents had a very loving relationship in which we could all only hope for. As much as they could, they did EVERYTHING together. Two peas in a pod – or “side by each” as my dad had always said. That that is how they will be buried – side by each.

The other night on the phone, my dad said he wished his heart would just stop. But tonight, all his vitals are good. His heart is broken though as his mind continues to be strong enough to remember and to feel the loss. As I’ve spent some part of nearly every anniversary they had with them, I had to be there for my dad today as well. Certainly not the same. None of us are.

In 01 Sept. 2011,  at Red Lobster in Matteson, celebrating their 60th anniversary. So soon after this day, all our lives began to alter.

Back Home

My dad arrived back at Manteno via ambulance. It is quite an ordeal – this type of transport and besides a very bumpy ride – he has to go through a re-orientation of sorts, with the doctor and nurses here.

From being weighed (using a sling type lift scale, extremely awkward and uncomfortable) to having all his vitals re-checked upon arrival, a change in whatever tubes are attached, etc. A conversation about the use of a catheter was not well-received by my dad but it was necessary to have at this point. Dr. Win said “you could have died Mr. Tallman” more than once, and reminded him that the high fever complicates so many things. In the past my dad would have said and I’ve heard him say “them why don’t you just let me die?” Dr. Win would laugh and say that he needs to keep him alive so he can keep his job! Now, this doctor is from Burma and has a weird sense of humor, but so does my dad. He also is constantly giggling and where my dad used to get annoyed by that, now he just accepts it and seems to giggle a bit himself when trying to have a conversation with him.

My dad took some time to get re-oriented to his room again. Looking around quite a bit and thinking he was in the hospital for 2 weeks, but it was 6 days. He knew everyone’s name and even if he calls people by other names – he remembered that as well! For example, he often refers to Steve (his roommate until last month) as Ralph. Ralph was my dad’s good friend and neighbor when they lived in Florida. Those two had a ball together and I recall one placing the other one in the trunk of their car and taking pictures!

My dad looks worn and torn. My brother and I agreed that we really were thinking he wasn’t going to make it this time around. That with all his progressive disease, etc. that the damn UTI would take him. Twice in one month, not a good sign. We pray the writing is not yet on the wall. When I look at him – and see him so discombobulated, so dependent on so many, it breaks my heart. Too many times when I follow him in an ambulance for transport to doctors, etc. I can barely look through the window in front of me; seeing him stuck in a wheelchair anchored to the floor of the vehicle, looking in one direction – whatever one he is facing.

My dad has always been the strong one in the family – to a point. Always very sensitive to others and helpful to everyone he could help, he never imagined himself in this scenario. Now 18 months into this new life, whatever quality of life he’s had – is likely due to his family, his care and his attitude. Never once has he seemed angered about his situation; only sad that he couldn’t be there for us, my mom 18 months ago (today), and that he misses her and so often when he wakes, even from a nap – he says he reaches over to hug her and calls her name and then he realizes, she is gone.

His life, as he knew it, is gone. We don’t know where he gets the strength to keep going. I don’t know that I would have it. But we never know, do we, until we have no choice but to try.

 

The weekend before last at the VA Home in Manteno, waving hi to Eric’s Uncle Gene that I was just texting with.

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Friends & His Boot

Saturday afternoon, we get a call from the nurse that my dad was to be RELEASED back to the VA home shortly. I already knew that we had an option to appeal this through an organization called KEPRO. Anyone heard of that? We dealt with them before, with my mom. It allows us to challenge the release because we don’t feel it is the right time based on our observations and known history. Our fear, that my dad would be right back in the ER within 24 hours or even less. So, I immediately told the nurse I was going to appeal, I called KEPRO and started the process.

Luckily, I had done so because when we arrived late in the day to see my dad, he was in no condition (from our perspective) to be going anywhere. He was just as confused, seemed feverish (though his nurse insisted he wasn’t – but still took the blanket off of him). He was shaking quite a bit, hazy look in his eyes, etc. What we did learn was that as soon as the discharge orders were filed, all meds from pharmacy were cancelled. So for the number of hours between, not only was my dad NOT receiving treatment, he wasn’t getting any fluids either. He was likely dehydrated which was why he was still quite confused. While he knows who we are, etc.,  we can tell when he’s off due to the fever. He was also shaking quite a bit. The staff fall back on Parkinson’s but we know that he only shakes this much when it is fever related. So we stayed with him until his vitals were taken and we were comfortable with the nurse and her analysis. The fluids were reconnected, etc.

So just a short bit ago, after talking with my brother about our coordination of visits…I get a call from my dad’s nurse-of-the-day. She said he asked her to dial me and then my dad found the strength to bitch me out a bit (a weakened bitching out) as he learned that I was the one who started the appeal to keep him there. He said ‘don’t you know that all my friends are back home waiting for m?’ He ordered me to pick him up right now and get him back there. When I told him that when it is time for him to go ‘home’ he will have to go by ambulance. He insisted not – that his boot was already there and did not need to be transported! When I asked him to repeat, he repeated the very same thing. He is not happy right now with me, so I shared the blame with my brother (just like the old days) and that it was our mutual decision. At least we got a bit of a laugh out of this latest crisis.

 

as of Saturday morning

We feel my dad has climbed out of the downward spiral he’s been in. When the BP gets so dangerously low and the fevers so high – it is frightening. His sugar levels remain high but at least under 400 for more than a day now.

Our favorite foot doctor (Dr. Serpe) came to see him today and examined the original wound on his foot and now a new smaller one that surfaced this week. He also massaged his legs. Joe is with him as I write and with Eric headed their shortly, I’m going to postpone my own visit until late.

Yesterday, my dad slept for nearly the entire time we were all there. Joe of course, was like a kid in a candy store when we ventured to the gift shop and bought a whole slew of candy to help him with his nerves I guess. (Only if I could be that thin and eat that much candy!) I had to rely on other measures before I even got to the hospital.

The care there has been quite good from our perspective. However, this ESBL has now reoccurred twice in a month. No one can say for sure that it was a continued infection that laid dormant for a couple of weeks, or a brand new one. Apparently, no way to tell. The couple of weeks in between, my dad was doing well – out ‘n about on his own at the VA Home, had a shopping trip, etc.

What is scary and seemingly unknown, is how much damage, permanent damage, can this type of infection cause – both mentally and physically. We could see for ourselves the setback for him, in these past weeks. I am wondering if we will see that but more, as he heals from this latest battle, combined w/pneumonia.

What we do know is that when he returns to the VA Home, once released from the hospital, he will remain in isolation from the others there, in a private room. That does not mean he’s isolated from visitors…but oddly enough, this ESBL is something that can be transmitted (in minimal cases) even though it stems from the urine.

These photos are of my dad last Saturday. Let’s hope we can share similar ones by next Saturday.

 

 

Update

Update

I only left the hospital because the fever had gone down from a 103.9 to a cool 102.1. My dad’s blood pressure had been slowly going down and none of this was a good sign. I arrived back home to hungry and anxious dogs just before 9pm, and w/a headache.

Most of the day, my dad was shaking terribly and in one of his alert moments (they were few) he told the doctor that he could stop his arms from shaking if he wanted to – but he just didn’t feel like it!

The nurse in ER was fairly new; maybe really new. She had so many troubles w/his IVs, with fluids, with monitors…she had to keep asking for help. She was very unsure of herself yet still professional and accommodating. There was one crisis after another in the ER bed next to us, so it was more unpleasant than usual.

My dad was moved from this very busy and scary ER into a room in the critical area unit later afternoon. Because of his NPO order, normal meds to help w/fever etc. have to be given to him either through his G-tube or via a suppository. The ‘Texas’ catheter that my dad has been taking advantage of for many months, could indeed be a culprit in this returning UTI. But it is now so bad, that his urine output is a milky white and the same consistency. They switched to a regular catheter when this was first visible.

The nurse that came on the floor for the evening shift (just an hour or so after we got accustomed to the daytime one) suggested earlier that I might not want to leave. My brother had already gone back home and I truly did not want to leave my dad alone. She said that all his vitals and still yet the unknown (blood cultures may take 48 hrs.) that they are watching for him to go septic. This is a word we heard just one month ago, when he was hospitalized for the same. Though his fever never got this high, and his BP never got so low. She told me that if it continues in this vein, that they would have to put him in ICU, and only w/my permission to give him meds to bring up his BP. They are still relying on the Tylenol suppositories to help with fever. The meds for the BP could be life saving, and maybe its something we should consider.

This same nurse said (maybe she shouldn’t have) that she believes he has pneumonia on one side. Still, a doctor must read that and confirm. Funny, that his X-ray was taken in the  morning and no one read it until she glanced at it???

I had a similar conversation with the hospitalist – Dr. Shaik, which he told me we should all start thinking about the quality of life my dad has…and that his hospital stays were becoming closer together due to dangerous infections. Another wound has developed on his foot as well. He said he didn’t want to scare me, but then later on after admission, his resident pretty much implied the same thing. While my dad has already stated DNR some time ago, there are other life-saving meds/procedures that can be used vs. when CPR might be the antidote for the heart stopping. Yet, some of these procedures may require more tubes and invasive action and I truly don’t think my dad would want that.

Only because his fever lowered and BP raised, did I leave to come home. Joe took over for me for awhile, and praying that we get no calls during the night, we will work out tomorrow’s agenda. He’s not in any pain but so very out of it and uncomfortable due to this continued high fever. Hoping he can come back from this round. Only when the cultures come back, can it be determined if the infection has reached the blood stream or his (one) kidney. This can take 48 hours.

Back to hospital

Update

I only left the hospital because the fever had gone down from a 103.9 to a cool 102.1. My dad’s blood pressure had been slowly going down and none of this was a good sign. I arrived back home to hungry and anxious dogs just before 9pm, and w/a headache.

Most of the day, my dad was shaking terribly and in one of his alert moments (they were few) he told the doctor that he could stop his arms from shaking if he wanted to – but he just didn’t feel like it!

The nurse in ER was fairly new; maybe really new. She had so many troubles w/his IVs, with fluids, with monitors…she had to keep asking for help. She was very unsure of herself yet still professional and accommodating. There was one crisis after another in the ER bed next to us, so it was more unpleasant than usual.

My dad was moved from this very busy and scary ER into a room in the critical area unit later afternoon. Because of his NPO order, normal meds to help w/fever etc. have to be given to him either through his G-tube or via a suppository. The ‘Texas’ catheter that my dad has been taking advantage of for many months, could indeed be a culprit in this returning UTI. But it is now so bad, that his urine output is a milky white and the same consistency. They switched to a regular catheter when this was first visible.

The nurse that came on the floor for the evening shift (just an hour or so after we got accustomed to the daytime one) suggested earlier that I might not want to leave. My brother had already gone back home and I truly did not want to leave my dad alone. She said that all his vitals and still yet the unknown (blood cultures may take 48 hrs.) that they are watching for him to go septic. This is a word we heard just one month ago, when he was hospitalized for the same. Though his fever never got this high, and his BP never got so low. She told me that if it continues in this vein, that they would have to put him in ICU, and only w/my permission to give him meds to bring up his BP. They are still relying on the Tylenol suppositories to help with fever. The meds for the BP could be life saving, and maybe its something we should consider.

This same nurse said (maybe she shouldn’t have) that she believes he has pneumonia on one side. Still, a doctor must read that and confirm. Funny, that his X-ray was taken in the  morning and no one read it until she glanced at it???

I had a similar conversation with the hospitalist – Dr. Shaik, which he told me we should all start thinking about the quality of life my dad has…and that his hospital stays were becoming closer together due to dangerous infections. Another wound has developed on his foot as well. He said he didn’t want to scare me, but then later on after admission, his resident pretty much implied the same thing. While my dad has already stated DNR some time ago, there are other life-saving meds/procedures that can be used vs. when CPR might be the antidote for the heart stopping. Yet, some of these procedures may require more tubes and invasive action and I truly don’t think my dad would want that.

Only because his fever lowered and BP raised, did I leave to come home. Joe took over for me for awhile, and praying that we get no calls during the night, we will work out tomorrow’s agenda. He’s not in any pain but so very out of it and uncomfortable due to this continued high fever. Hoping he can come back from this round. Only when the cultures come back, can it be determined if the infection has reached the blood stream or his (one) kidney. This can take 48 hours.

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Sorry to share once again, but my dad has been dealing with a very high fever again for more than a day, that can’t seem to be controlled. He also has a new wound on his foot. He likely has reactivated the UTI or something.

I was just saying last night, that considering all that he’s gone through – he was doing pretty well. Had lots of visitors this past week, and enjoyed them all. He was looking forward to playing with the new tablet we just got for him.

Keeping you posted.

 

little improvement

Visited with my dad last night. When I arrived, his door was shut and after knocking and hearing no response I entered. He was in a deep sleep and trying to wake at the same time. He was quite confused and still demanded that I close the door again.

His new (temporary) room faces west so the sun was shining very bright and the room was quite warm, even with the fan going.

After he was more clear he told me that he wants to keep it closed so people quit ‘walking’ by and looking at him. Well, they did the same thing when he was on the other side of the hall, and he did the same as well. Suddenly, he seems aggravated with one man who my dad always seemed fond with – would tell him he looked like Robert Duvall. Now, he doesn’t want him stopping by anymore.

In the meantime, after watching World News, some of the convention and channel surfing, another resident named Bob (who actually does ‘walk’ around) came by to tell us that one of the residents, a Mr. Issac Bailey, had passed away at 6:15pm. I knew the man who always liked to see Dolly when I brought her. Apparently he’d been on dialysis for a long time and took a turn for the worse recently – transferred from a 4-person room to the single room — now deemed as the ‘death room’ by the others. This is the room directly across from my dad’s prior room (222) and it was never clear if someone was living there or not…no pun was intended.

My dad always called Mr. Bailey – Mr. Bailey. He’s not even sure why as that is the only man he referred to like that. My dad seemed saddened with this news, as was Bob. One of the nurses told me that deaths always happens in threes there. I remember back in January, just after ‘Bob’ told us about two other men in their unit had passed – my uncle had passed away the day before. There was the three.

In any case, my dad’s sugar level remains high which is not helpful with this infection – but one affects the other. The typical vicious circle. While it is likely he will improve, this has been a setback from him. He is liking the private room but doesn’t accept the fact he might not be able to stay there. I can’t seem to get a straight answer about that either.