Merry Christmas, Unhappy New Year (prayers needed thread)

[Wolfpack]

I've seen this community turn out in great, reduced-to-tears ways for its members and I'm now in the boat where I need those good feelings and prayers and well wishes.

I got some seriously awful news this morning. My father suffered a stroke while getting ready this morning (the bleeding variety, not the clot variety). He has the classic stroke problems (aphasia, paralysis, etc). The stroke didn't kill him, but it has definitely damaged him and he most likely will never fully recover from it (my sister said the doctor thinks it would take a year just to get halfway back).

This is bad enough, but this is also on top of finding out recently that my mother is most likely slowly dying of untreated diabetes and is effectively blind on top of it, so it was difficult for her to get help when this happened. (Why? They are Christian Scientists with all that entails for anyone familiar with it.) Since she doesn't get any diagnosis or treatment, we're only guessing, but the ballpark estimate is that she'll not survive the full 2012 calendar year (could be next week, could be next month, could be six months--nobody knows).

Dad's stroke means all four of us kids are now scrambling to figure out what we're going to do to care for both of our parents at the same time. Before now, Dad had been caring for Mom, but that's obviously not going to happen anymore. Both my sisters live in Charlotte, so there is some frontline family support, but this is much more than any one of us is ready for at the moment.

My parents are both in their mid-60s, so this isn't a case of "they had a full life" yet, so some of the tragedy is that they are, so to speak, relatively young, and some of it is the fact that my father, although he retired a decade ago, really hasn't lived a retired life. Sure, he had the day-to-day mundanery, but he was also the primary care giver for my grandmother during that time. She lived with my parents in Charlotte and had medical issues that ultimately lead to her being put into a nursing home by 2010 and she finally passed away this past August. However, that was about the time that my mother began to get worse from her conditions, so my father never really got to relax as he had to put more energy into caring for Mom.

Right now, I'm sort of in a morbid position of thinking perhaps it would have been better had Dad died outright because it's been much harder on me to realize that he's now effectively a shell of himself and will most likely be for as long as he continues to live. It's a selfish thought, I know, but I have it just the same. It's not a living death, but it's close.

I had begun emotionally preparing for my mother dying, but the suddenness of this has really hit me hard because of the collateral damage involved. It's even a little more so since we did our typical Christmas trip to visit them in Charlotte this past weekend and left them on Tuesday.

So, that's what I face at the moment. I'm heading over to Charlotte tomorrow and my brother's flying in from Colorado on Sunday and then we'll go from there.

Thanks for reading and for any prayers, thoughts, well wishes, or any other help any of you can offer.

-- Jason

[DaddyTorgo]

Aaargh...jeez. My thoughts are with you Wolfpack.

I have no experience with any of that, but if there's anything that we here can do, please let us know!

[Matthean]

Both of my parents are in their mid-60s so I can't imagine what it's like dealing with it. Having my grandmother deal with alzheimer's is bad enough. She is at the point where she forgets ever going to McDonalds, or eating fries with ketchup. She's the last of her generation in the family as well and my parents are the oldest of the next.

[BYU 14]

So sorry Wolfpack. will definitely keep both your parents in my prayers, as well as you.

You have a lot on your plate and I wish you strength needed to get through this trying time. Like DT, I don't have any experience in this exact scenario, but as diverse as this board is I am sure someone has been in a similar situation.

[cougarfreak]

Man, hang in there. Stay strong, they need you. I lost my mom when I was 20 (she was only 50). Prayers your way.

[JonInMiddleGA]

Thoughts & prayers with you & your family.

[JPhillips]

God bless. I never had to deal with both parents illness at the same time. Can't imagine how difficult that must be.

[thesloppy]

Ugggh, sorry to hear that Wolfpack, what an awful bookend to your holidays.

The specifics sound a lot different, but my mom has (somewhat willfully) become a shut-in over the past few years, and her religious beliefs also keep her from getting any kind of diagnosis and treatment, which is certainly a challenge. Suffering and sacrificing (and facing mortality) for someone else's religious beliefs is quite a cross to bear (pun intended), especially if you don't share them. My only advice in that regard is that the next step of the initial get-together/decision process is that most important, and that you should approach it as such, and be as prepared, proactive and rational as you can be (which is a very hard thing to do, at such an emotional time), because the initial decisions will drive and decide the coming years.

First and foremost: put YOU and your siblings priorities FIRST, before your parents. This sounds counter-intuitive and selfish, but the plain fact of the matter is that the easier you make it for you to help them, the better and more help they will receive. For lack of a better example: moving them closer to one/some/all of you may seem like an immediate undertaking of monumental proportion, but it may make the next 10 years of your life fundamentally easier and less stressful, especially for whomever ends up being their primary caregiver. Figure out what changes are necessary and immediate, and which are just emotional. Make sure to be clear, honest and truthful about what roles are going to be fulfilled by who....many families have caregivers/martyrs of various flavors, make sure people want and understand that role before assigning it to them out of habit, and avoid setting the seeds for dysfunction and conflict, rather than help and care. Not that you or your family has any of those dysfunctional issues, and certainly nothing like that came through in your note.

I am so sorry again for your tragedy.

[Vince, Pt. II]

Keeping you guys in my thoughts. Tough news

[CU Tiger]

First and foremost my thoughts and prayers are with you and your family.

Second, it sounds like you have a tremendous support network already, but if it is ever of benefit, I am literally 20 minutes south of Charlotte if there is anything I can do to help dont hesitate to hit me up. My kid sis is a pharmacist in Charlotte and we have a ton of network contacts there. Seriously if you guys need something I'd be happy to assist anyway possible.

Finally don't beat yourself up about your thoughts on your Dad, for many folks their Dad is their ultimate hero...sometimes it is easier for our heros to be gone than to see them be reduced to mere mortals in our eyes. This is true of sports figures, and family. I think your reaction is perfectly normal and healthy. Time helps to heal all.

[BigDPW]

Jason - I am sorry to hear about this tough situation. I will pray for you and your family.

[Abe Sargent]

Given

[Sweed]

Sorry to read this. Your family will be in my prayers.

[Radii]

So sorry to hear Wolfpack. My situation isn't exactly the same but there are a lot of parallels with declining parents that are way too young (also mid-60s) and its extraordinarily difficult to be strong enough to help them and to cope with what you're seeing at the same time. I wish you the best and you have all the positive thoughts and energy in the world coming from me.


thesloppy's advice is really good IMO, not gonna quote it all, but read back up again!

if it is ever of benefit, I am literally 20 minutes south of Charlotte if there is anything I can do to help dont hesitate to hit me up.

In a similar line I'm just next door to Raleigh if there's anything I can do for you in the Raleigh area.

[JonInMiddleGA]

Something thesloppy said triggered one thought that I'll offer FWIW.

When my grandmother was diagnosed with (what turned out to be) terminal cancer, I had an extremely tough time accepting her decisions about treatment vs what I thought was the best course. We avoided coming to loggerheads over it but I think it easily could have & I'm quite sure I would have regretted that for the rest of my life.

I give that background to say this: it sounds as though you may not be in agreement with some of the decisions your parent(s) may eventually make about their care/treatment. It's one thing to think you're prepared for that, actually coming to terms with it in as positive/productive was as possible may be a different matter. Find people to talk those feelings over/through with - FOFC can be a great vent - but don't sit around & beat yourself or them up over the conflict. I ultimately found peace with her decisions (in no small part by accepting the fact that they were her decisions to make) but it was one of the most difficult things I've ever had to come to grips with.

[tyketime]

You and your family will certainly be in my thoughts and prayers. I would also agree wholeheartedly with thesloppy's advice. My parents are now in their mid-80's, and health issues are becoming very challenging for them as well as me and my brothers. It has been a contentious issue for all of us from time to time. But take care of yourself and your family first. That will be the strength you will rely on as you attempt to deal with this situation.

[Wolfpack]

Thanks, all. We've seen some of the effects of the sort of infighting that occur when siblings are trying to figure out how to care for their parents because one of my brothers-in-law lost his mother in the last couple of years and there were some hard feelings among his siblings from what happened regarding her care. So, we are aware of the landmines that lay in front of us. The problem is we don't know where they are or how strong. Initial indications I'm getting from my sisters are that my mother at least for the next while may get in-home care while my father will be somewhere else on a more permanent basis, but that's currently speculation and we'll be looking at our options when we all get together.

I think I've shed more tears today than I have in my adult life combined, so yeah, it still sucks royal right now. Thanks for being here. I don't have many other places I could sound off like this and just get it out there to be heard.

[Swaggs]

Sorry to hear that so much is going on at the same time -- I'm sure it is overwhelming.

One small tidbit that I can add, from experience, is that there can be a lot of recovery that goes along with having a stroke. When the swelling goes down, there is the possibility of considerable improvement for your father.

Will be sending good thoughts and prayers and hoping that you can continue to stay strong through this tough time.

[ISiddiqui]

Prayers with you and your family. I am very sorry to hear what you've been hit with .

[CleBrownsfan]

My thoughts are with you and your family through this tough time. I can't imagine the emotions you must be feeling

[Dutch]

Ugh...thoughts and prayers sent...very sorry to hear this, wolfpack.

[Neon_Chaos]

Sorry to hear, wolfpack. Good thoughts going your way.

[Wolfpack]

Thanks again, everyone.

I'm in Charlotte and got to see my father this afternoon. I was steeling myself for the worst in seeing him. What I got instead was distinctly better--that in spite of the stroke that he suffered, he was still him--the familiar movements of his left arm, the expressions on his face, even the tone of voice that came through the garbled speech was very much all him and his personality coming through mostly intact. It might've been a bit caricature-ish, even, because his inability to articulate himself effectively probably lead to much more expressive non-verbal communications, so much so that I was laughing a bit too much at it all, possibly in euphoric relief that in spite of what happened, he was still Dad. He's also got movement on the right side of his body, more so in his leg and foot then in his arm and hand, but he can do movements with both limbs. His face does have that half-paralyzed look that stroke sufferers do have, but it's still expressive nonetheless. He's no longer in ICU and is now in a regular room and will be there for the next couple of days before eventually beginning long-term rehab.

It is still going to be a tough slog to recover for him, though. While his personality is intact, it's still a bit early to see how his cognition is. He understands us well enough, but it's still a challenge for him to think through things and give a correct answer to a question like what today's date is. I can also tell he's going to be particularly frustrated by his limitations since he's not blissfully ignorant of them. In spite of all that's happened, he's still trying to figure out how to help Mom or get back to Mom (which will be a very powerful incentive for his rehab). Comically, the last thing my oldest sister and I talked with him about before leaving was that he was trying to get us to check to make sure recordings had been set up on the DVR at home, I'm guessing so he and Mom could eventually watch them--it's a little unclear whether he wanted to watch any of the NYE shows or whether he was fatigued and confused and thought that there would be new shows on this evening for regular prime time shows.

I also learned a bit more about what happened. He basically had a brain bleed and oddly enough, he had enough room in his head to actually accomodate it without severe damage occurring, so what may end up happening is that the bleed will go through a repeated cycle of clotting and dissolving over time. He may not make a full recovery and have normal independence, but he won't be a vegetable, either, it looks like.

He'll have to change his ways, though, if he wants to survive long-term. His blood pressure is astronomically high (basically he was due to blow something, it just so happened to be in his brain rather than his heart), so he'll have to swallow his pride in faith and start using blood pressure meds to keep it under control, along with finding ways to improve his eating habits. This also has implications for me as it's now well-established that both sides of my family have a poor track record with these sorts of medical conditions, so I'm now confronting the need to change my own ways for the better, something my wife and I were planning on doing in the New Year anyway, but we now have greater impetus to do so.

So, that's where we are right now. Dad is still Dad, as much as he can be one day after a stroke, and I'm in a much better mood than I was a day ago with this knowledge. There's still the big-picture issue surrounding care for both my parents and we'll begin to address that now that we know better what we have with Dad as he is now.

Thanks again for reading and for all the well wishes and prayers offered to one and all. I will continue to update as I have any news to add.

-- Jason

[JonInMiddleGA]

Awesome news 'pack, it really is. Ups and downs sure to come along the way, but what a great Up for now. Thanks for taking the time tonight to fill us in, thoughts & prayers remain with you & your family.

[Radii]

Originally Posted by JonInMiddleGA

Awesome news 'pack, it really is. Ups and downs sure to come along the way, but what a great Up for now. Thanks for taking the time tonight to fill us in, thoughts & prayers remain with you & your family.

Huge +1

[M GO BLUE!!!]

Originally Posted by Wolfpack

So, that's where we are right now. Dad is still Dad, as much as he can be one day after a stroke

And he should keep getting better. Great news that he's in that good of shape one day after!

Enjoy what time you have with your parents...

(I miss my dad... went by his marker a couple weeks ago. Can't believe it's been over 17 years.)

[thesloppy]

Good to hear you got some relief!

[CU Tiger]

Great update!
Stay strong and look for positives. Best of luck with convincing him to get on the meds, sounds like that is the pivot of major long term progress.

[Mizzou B-ball fan]

Unfortunately, have been there done that as far as parents (or in-laws in my case) getting sick. Best suggestion I can give you is just to take it a step at a time. Don't get caught up in planning long-term too much and just focus on what can be done short-term. It can get overwhelming if you try to plan too much.

Obvious suggestion as well would be to make sure all of their estate is in order. You don't want any issues down the road that can be solved by taking a day or two to plan with them.

Great news on the update. Wonderful that he's been given a second chance.

[Wolfpack]

Yes, it's mind-staggeringly late, but there's some plot twists to go over in the daily update....

Dad wasn't as with it today. He mostly slept throughout the day. They could barely rouse him to feed him anything and he basically slept through his bath. Perfectly reasonable and understandable though, given all that's happened to him.

The major issues today centered around my mother. With Dad in the hospital, we had the nurse who helped take care of my grandmother while she still lived with my parents brought in to watch Mom for the first night of Dad's stay, but she couldn't do it last night (it's not what she's normally called to do or is trained for). So, my sisters ended up spending the night with her and as I gather, it was a very rough night for everyone involved. Mom's condition has made it practically impossible for her to sleep normally or even find a comfortable way to sit or lay down anymore. My younger older sister also got to see how bad things have gotten as she handled getting Mom ready for bed.

The end result of all this was Mom finally relenting and agreeing to be admitted to the ER this morning during the time she was visiting Dad. This allowed my sisters to continue to coax her into getting tested by the hospital, including blood work and a CT scan. (If you are familiar with Christian Science at all, then you'd know this was a very large step for her to take, but with some peculiarities...more on that in a bit.) My sisters were generously allowed to stay with Mom while she got poked and prodded in these ways for the first time, maybe ever (she did give birth to us in hospitals, but I doubt they tested her like this then). Meanwhile, I was on my own upstairs in Dad's room, occasionally texting with my wife on what was happening. With Dad asleep all day, it was pretty much downtime for me and so I ended up watching the Saints paint the Superdome turf with the Panther defense's entrails on the TV in the room. My brother then arrived from Colorado this afternoon to see everyone and then not long after my sisters came up so we could all see the ER doc and hear her take on all the test results.

In the end, it's not diabetes that is killing her. Instead (pending official confirmation of the oncologist later today), this is now unofficially a "cancer sucks" thread. My mother has lymphoma, most likely, and it's pretty well advanced. The lymphoma is pretty much rolling unchecked through her lower body, and is most critically affecting her kidneys, which is what's lead to all the fluid buildup everywhere in her lower body. She also has a bit of fluid buildup around her lungs and, in an odd side effect, she's actually "sweating" uric acid through her skin, causing it to itch and be irritated. We had noticed her scratching more and getting more irritated of late, but would never have guessed why.

So, now we know what we are up against. All four of us are saddened by the news, but not shocked or horrified by it. We knew she was in trouble, so all this did was confirm how bad it is and just what it might be. At the moment, we are working with doctors to figure out treatments to improve comfort (she actually consented to efforts to drain away some of the fluid buildup and even accepted pain medication use), while negotiating the tricky minefields related to her faith, which results in the weird situation whereby the doctors will ask her if it's acceptable to do this or that treatment, but the doctors must only talk to us about specifically what is wrong with her. They have been told for now to avoid specific references to cancer or lymphoma in talking anything with her and instead just refer to a vague concept of "masses". It's all become a bit ironic. For years, my parents have generally worked hard to disguise my mother's failing health from us to the best of their abilities (not always succeeding), and now we're put in the position of having to withhold information from her about what specifically is wrong with her, at least until the oncologist gives confirmation.

The goal we are working for at this point is to get Mom treated effectively enough that we can begin looking at moving her into an assisted living facility and Dad can continue his rehabbing with her there. It'll probably the one that my grandmother was put into back in 2010 since it's fairly close to where both of my sisters live. My oldest sister is also beginning to work out how to get power-of-attorney so that she can carry on the needed activities to keep Mom and Dad's house (literal and financial) in order.

So, in the end, today was not as good as yesterday. However, we also know much more now than we did 24 hours ago, so there are still positives to walk away with (as much as one could get when you finally know why your mother is dying). We can begin treatment and comfort for Mom while continuing to work with Dad.

I'll have to head back to Raleigh in the next couple of days, but I'm planning to return on MLK weekend since I get Monday off as a holiday. I may be coming back every couple of weeks after that to help give a hand to my sisters who are both doing true yeoman's work under tremendous circumstances that no one was quite ready for when everything happened on Friday.

Thanks again for reading and for all your prayers and good wishes.

-- Jason

[Icy]

So sorry to hear, you and my family are in my thoughts.

About your father recovery, keep the faith, if he stays strong and really wants to get better, he will.

My wife's aunt who is 76 years old, had a stroke a year ago that paralyzed the whole right half of her body and face. On top of that, she was limp on her left leg from an accident 30 years ago, so losing the right part of her body, meant she couldn't walk anymore even with crutches.

We thought she wouldn't ever recover, specially as she can't do most of the recovery routines because his limp on the other leg. It was so painful to see her unable to eat by herself at first, not understanding that she wanted to say etc.

Fortunately we were totally wrong. She showed high whiling to get better, worked so hard despite his age and limp problem, and she is like 80% recovered now after a year, she can slowly walk again with crutches at least inside her house, her speaking is almost as before, and she has more or less the same self-dependent way of life she had before the stroke, with just a hired woman that helps her with house cleaning a few hours per day, but she even cooks her own food, etc.

[MacroGuru]

Hang in there Pack..you and yours are in my prayers.

[Wolfpack]

Here's today's update:

Dad was much more alert and lucid today than yesterday. He was able to eat his meals without too much difficulty, though he still needs some help being fed. He's very much got his faculties though he continues to struggle to make himself understood. He's been told he had a stroke though he doesn't remember anything about what happened. He's also been made aware of the situation surrounding Mom, though we continue to filter the information as needed for his sake in his current condition. He also got to finally see his grandkids (my nieces and nephews) which brought up his spirits some. We will be meeting with his doctor tomorrow for next steps in anticipation of him moving into a rehab program at the hospital in the next week.

Turning to Mom, the day started out with some fairly grim news from the medical staff handling her. They told us that she was developing high levels of potassium because her kidneys were barely functioning due to the lymphoma and a kidney stone. They needed to drain them out, else she was likely to die of kidney failure within a matter of days at most. So, we were able to convince her to go through with that procedure, though they completed a procedure to drain fluid off her lungs first to help her breath better during the kidney draining procedure. She managed to get through both procedures okay.

Tomorrow, however, is the big day with the oncologist. I had previously said today, but it didn't come about and so now it's tomorrow. At any rate, this will be the discussion that sets the terms for what kind of time-extending care we'll be able to give Mom. The procedures with her lungs and kidneys today have really only bought her and us some extra time since they were actually addressing the biggest issues pressing on her survival (as a matter of fact, as I understand it, had she not been checked in yesterday, there was a decent chance she would have died already). Again, we aren't expecting miracles and that Mom's time is not going to be very long, but we continue to work with the goal of reuniting our parents somehow in all of this mess.

Regardless, after we meet with everyone tomorrow regarding care and treatment for both Mom and Dad, I'll be heading back home to Raleigh so I can finally be reunited with my own family. My wife's been a trooper managing our kids on her own these few days while also dealing with the stress of all that's happened to my parents. She lost her own mother when she was quite young and her relationship with her father can tend to run hot and cold, though it is a loving one. So, she's come to be very attached to my parents and she's taken these events about as hard as the rest of us have.

Still, it will be very hard to say good-bye tomorrow knowing that there is a very real possibility it will be the last time I see Mom. I hope and I pray that it isn't, though. When I come back in a couple of weeks, I want to see her and Dad together again.

-- Jason

[MizzouRah]

Thoughts and prayers Wolfpack.

[BigDPW]

Still praying for you man!

[spleen1015]

Thoughts are with you man.

[Kodos]

Man, hate to hear about any family having to go through two ordeals like this at the same time. Hang in there, Wolfpack. Sending good thoughts your way.

[samifan24]

Praying for you and your family, Wolfpack.

[Wolfpack]

...and I'm back in Raleigh. It's good to be home again. Though I'm back, I'm taking another day away from work because frankly I'm just burned out at the moment. On top of that, tomorrow is the day they will finally get a biopsy from Mom, so focus wouldn't have been super-duper anyway.

On a positive note, Dad is now official out of the hospital, though not off campus as he's moved to the adjacent rehab center to begin what's called "acute rehabilitation". He'll be doing three hours a day of rehab for the next two to three weeks before he'll have to go into assisted living (at least initially, he'll have to have full-time nursing once this move occurs because even after rehab, he won't be able to care for himself).

Back to Mom, still no meeting with oncology as they aren't wanting to make any prognoses or treatment suggestions without an actual biopsy to know exactly what lymphoma she's got (fluid testing as of late this afternoon was inconclusive according to resident dr). So, the day was mostly spent waiting around trying to meet with surgery and anesthesiology to work out how the biopsy would be done (mostly having to do with type of anesthesia involved as general anesthesia would leave Mom unable to speak while she had a breathing tube in place, a situation we wanted to avoid since Mom currently is lucid and able to communicate her wishes).

At this point, the biopsy is scheduled for the morning and they will make an effort to extract under local anesthesia, but Mom has consented to general anesthesia if it becomes necessary. Once that's done, oncology will have their look at the biopsy and will then finally make their verdict. No one should be under any illusion that this will be a positive outcome. Rather, this information will merely serve as the final diagnosis and therefore what the best options are for Mom's care in her final days (or, if we get lucky, weeks) since there are different lymphoma types and treatment options vary between them. We obviously want to find ways to extend her quantity of life, but not at the expense of quality.

After the last 96 hours that I've been through, all I have to say is that for those of you who have parents still living and are still enjoying a positive relationship with, drop them a line and let them know you love them. As we kids now get older, our time with them gets a little shorter each day and it could go to zero without any warning. (A bit maudlin, perhaps, but I'm as guilty as anyone of taking them for granted, even as I knew on some level that Mom was slowly slipping away over the past month or so. I just didn't think I would come so harrowingly close to losing both of them in a span of days.)

-- Jason

[Wolfpack]

Update time....

Things get a little more surreal, I suppose. Not in a bad way, either. It's still bizarre to think about the fact that had Dad not had his stroke, Mom would be dead now, but that's neither here nor there at this point.

We are pretty close to the end of the beginning, to borrow from Churchill. There are still some more tests and analyses to be completed, but the main biopsy testing as expected confirmed the original diagnosis. More specifically, it's non-Hodgkins lymphoma and it was a very aggressive lymphoma in that it basically took only about six months for Mom to get this bad.

Sounds bad, and it is bad--not going to not sugar-coat anything on that point. However, my siblings were expecting that the oncologist would say that it's terminal and that there was nothing to be done for it. Remarkably, they found out it isn't terminal. The initial prognosis is a 30% chance of long-term survival. Given that she would have been dead by Tuesday had she not gone into the ER, 30% is pretty damn good. Other than the cancer that nearly sent her into kidney failure, she's not that bad off healthwise, though they'll need to do an ultrasound of her heart and a little more testing to make sure she can handle the rigors of any treatment she may take.

As to what kind of treatment, we've been presented with three options: an aggressive option that involves about five different drugs, a moderate option that involves three drugs, and then the do-nothing/palliative care option. Most of you would have no compunction taking what's behind door #1 or door #2, but matters of faith are never simple, so there's always a chance Mom may still take door #3. However, I think once she finally opened the door to allowing medical care and having carried it out this far, it's become (at least as I view it) "in for a penny, in for a pound", so I'm inclined to think that she'll continue with one of the medical options. I'm sure she's tried as much as she can to reconcile everything with her faith and has been able to find a practitioner (the first reader of the local church who does know both my parents) who won't begrudge her seeking treatment like this, which I think has done her good psychologically. Christian Science does have its zealots, so it's been tougher than you'd think to find someone willing to help despite the circumstances.

So, that's where things are with Mom. We've reached a crossroads. There's no guarantees the treatments will work, but at least there are options on the table. We've basically been able to extend her survival from hours to days to weeks at this point. Maybe we can get years if the treatments pan out. Regardless, unless she chooses the palliative care option, I'm no longer having to spend a bit of energy each day thinking about whether a call is going to come from my sister saying that I need to come because Mom's about to die. Things can always change, but at least the tunnel we're in isn't pitch black anymore. It's a lovely bland shade of dark grey with some pinprick of light way off in the distance. (Please Lord, don't let it be a train...don't let it be a train...don't let it be a train....)

Dad continues rehab, not that he's thrilled to do it, but he continues to slowly improve. His leg is coming along well, though his arm isn't progressing as quickly. He also seems to be improving his speech as my sister was generally able to pick up at least one complete sentence and I'm sure he's getting his words better understood in general. One funny moment came when my sister finally got power-of-attorney documents for both my parents to sign. She got medical POA for my Mom, but also presented it for my Dad and apparently his blood pressure spiked a bit as he looked at it and then asked them whether they knew something about his condition that he didn't. They quickly said that everything was okay and that he didn't have to sign that one. I can already tell managing his stress level is going to be so much fun in the future.

So that's the update for now. I'm still planning to head back over next weekend, this time with the family in tow so they can give Mom and Dad another shot of enthusiasm and will to carry on.

Thanks again for all the prayers and well wishes.

-- Jason

[Wolfpack]

Since I'm heading back over to Charlotte tomorrow, I figure now's a good time to update on everything that's happened since last week....

Mom did opt to do the chemo as we hoped and started the regimen earlier this week. So far, so good. They've pretty much gotten her kidneys back to normal, which is essential when doing chemo because the kidneys are needed to flush out the toxins. She's still mostly confined to her bed, though, and that's beginning to take a bit of a toll. She's also needing to eat and drink more than she has in quite a while and that also is tough for her to do. Otherwise, the doctors are saying the drugs are having the desired effects on the lymphoma, so there is progress being made. Probably better to say that it's a good start right now.

As for Dad, he's continuing to have the normal ups and downs in rehabbing. They're progressing him to more solid food (as in, not puree'd and sculpted), so that's something. However, as best as I can tell from my sister's messages and a few pictures I've seen, he's definitely struggling mentally right now. Not just in cognition, but in general mood. Perhaps because he retained his personality, he does have a general understanding of the situation and it's made him aware somewhat of what he's lost and just how hard it's going to be to regain anything. I wouldn't classify Dad as a control freak, but he knew what he knew to the best of his abilities and generally was very successful at keeping control of his and my Mom's little world, even after Mom started declining a decade ago with her sight loss and then Grandma's decline the last several years. He's lost all of that control and then some (consider that he can't control his body, something we all take for granted) and I'm sure it eats at him in some way. I'm sure he's also still worried about Mom (I don't know how much he knows about her situation) and maybe is beating himself up on some level wondering where he could have done something differently. I don't know that for sure, but second-guessing is a family trait, so it wouldn't surprise me.

Hopefully, seeing the girls will give both of them some cheer, so everyone's coming with me this weekend.

Will continue to update as events warrant.

-- Jason

[Izulde]

Glad to hear there's some progress, no matter how small. Every little bit helps.

[terpkristin]

Wow I missed this until just now.

Sounds like it's been a very crazy year so far. Glad to hear that things sound like they're at least stable now, with maybe even small improvements. Baby steps.

Hoping for continued good news.
/tk

[BigDPW]

Jason - still hoping the best for you and your family! Thanks for the update.

[Wolfpack]

So, it's been a little while. Just wasn't in much mood to be on the computer of late, much less post. No, nothing bad is happening to my parents. Just one of those lull periods I go through from time to time.

Anyway, the visit I had over MLK weekend went fairly well...at least with regards to Mom. Dad unfortunately got a day or two of PT wiped out because of stomach issues. It's really becoming obvious at this point it will take a long time for him to become really self-sufficient (at least to me).

Mom, on the other hand, managed to get through her first chemo round without too much trouble (she did get hit with nausea a few days after I came back to Raleigh, but seems to be getting better again). The doctors were very happy with her progress and a little surprised at the speed of improvement, even. (Irony may play its part as it's suspected the drugs are more effective because Mom's body is practically untainted with any drugs or other inhibitors due to her Christian Science faith.) She still has nephrostomy tubes in her kidneys, though hopefully continued treatment will finally allow the one kidney that's been blocked up by the lymphoma to begin functioning more normally (using the ureter) as the tumors are reduced. The other still has the stone blocking its path to the bladder, so I don't know where things stand resolving that (her weakened state ruled out any aggressive approaches to getting rid of it).

The one big piece of news we found out while I was there was that we now know with some certainty what is causing her blindness. She had very limited light/dark vision and that seemed to fade even more after the treatments started, enough so that an eye doctor was brought in to see what he could do to help her. However, it also gave a chance to find out what kind of basic diagnosis he could provide on her blindness in general. His diagnosis? Cataracts, worse in one eye than the other (makes sense because she went blind in one eye before the other one by a couple of years). However, it is still treatable (at least in the less-affected eye), so there is an opportunity to at least restore Mom's sight in some capacity and she is very receptive to getting it taken of. They are currently working on scheduling the cataract removal sometime soon. This would be a rather remarkable turn of events and frankly, whatever else may happen or not happen with her, it is the one thing I'm now wanting out of this whole nightmare: that she gets enough of her sight back to see all her grandkids again. For all intents and purposes, she's never seen my kids at all except maybe my oldest as an infant and would only have memories of one of my sister's kids as anything more than a toddler.

From what I've learned from my sisters, the plan is that they are both being moved into the same nursing home tomorrow. This will be a near-term stay for Mom given that she's obviously going to recover some degree of independence much more quickly than Dad will. To start, they will be placed in adjacent rooms before eventually being put into the same space somewhere along the line. What happens with Mom over the longer term is undetermined as yet. It would be wonderful and astounding if Mom's tumors regressed enough and she got her sight back to the point that she could actually live at her house independently, but I'm not banking on that happening as yet. Just too many miles down the road right now. At the moment, I still count blessings that they're both alive and recovering.

-- Jason

[wade moore]

I missed this thread because I haven't been around FOFC as much lately.

Anyway - I can't relate to what you're going through with your mother, but I can fully, 100% relate to what you're going through with your father.

See this post - A bad, bad week for wademoore and lordscarlet - Front Office Football Central for more, but my father had a stroke in November of 2007 (parents long-time divorced, so he lives alone). Sounds like his limitations afterwards were very similar to your father's. You father maybe suffering a little more from the paralysis, maybe a little less from the aphasia.

My thread deserves an update since it has been 4 years since it happened. I am in much the same boat as you. My brother is local, I'm a couple of hours away. So yeah, I can relate big time. Feel free to PM me or post if you want any specific advice, experiences, etc - either with the process of healing your dad, or the process of dealing with it yourself.

The status in a nutshell: My dad will never fully recover. He still gets regular visits from my brother and me (much more from my brother) and there are many things he struggles with. The biggest remaining issue for him is the aphasia and some mental issues (namely just short-term memory type issues). The aphasia has many overarching issues that you don't necessarily think of. Expect that you and your family will have to handle a lot of day-to-day issues that you don't think of if his aphasia doesn't improve. You guys will get a good communication system down, but speaking with strangers will always be a challenge.

Anyway, my heart goes out to you, let me know if I can do anything.

[Wolfpack]

After ten months and six rounds of chemotherapy, my mother became a statistic. A GOOD statistic.

Yes, she has become one of the fortunate ones to have faced down stage four lymphoma. She had a test done last week and it confirms that she is in remission. She will continue to be monitored over the next while, but she has climbed out of the valley of the shadow of death.

Life is still never going to be what it was, though. Dad's recovery just never really got itself off the ground very far. Physically he's come some way back, but mentally, he is still very much having troubles. If he's thinking and speaking in a prepared way (i.e. saying "hello" or "how are you?"), he's decently understandable, but if he starts following whatever train of thought his brain is struggling to sort out, it is still very difficult to impossible to understand what he's trying to talk about. I think unfortunately the stroke has probably caused too much damage for him to ever be cognitively what he once was.

It's also pretty likely at this point that they won't be living independently anymore. Mom can't see and Dad can barely take care of himself, so he can't take care of her. Everything they have, they own, though, so there's no debts to work out and we can take time to decide what to do about their house. I'm sure my folks want to move back home, but I just can't see how they'd do it without a full-time care staff of some kind in-house. They're currently staying in a very nice senior assisted-living facility in Charlotte that, while fairly expensive, at least can meet all their needs and doesn't require anything to be done out-of-house like grocery shopping or things of that nature.

Regardless, it is still a happy time for all of us. When you come out of such a deep, dark well like this, figuring out the details of how the world will work from now on pales in comparison to the fact that there is still a world with all of us together in it to begin with. We still have holidays to look forward to together as a family and I think Thanksgiving in particular will live up to its billing this year.

While I quietly let this slip off the radar from public viewing, I still came back to this thread from time to time to remind myself of all that happened during those first few crazy weeks. Thanks for all the well-wishes and prayers said and unsaid from all of you.

[Mizzou B-ball fan]

Nice! Take advantage of this extra time you've been given! Best of luck!

[Logan]

That's great news.

[MizzouRah]

Good news indeed.