Mom emailed last night with an update to Dad’s possible UTI. Although he seems to be doing a little better from the antibiotics, his blood work came back ‘ominous’ with some red flags for liver and kidney damage, as well as dehydration and diabetes.
He’s lost 30 pounds in less than 6 months. He often refuses to eat or drink because things ‘taste like dirt’. Mom can sometimes coax him into something sweet to drink to combat the dehydration, but of course this is not good for his diabetes. The doctor is disinclined to sedate Dad and put him on IVs for the dehydration, probably as a palliative care/quality of life issue.
Mom wasn’t answering texts, so I called Middle, who was quick to mention Dad might bounce back now that he’s feeling better, but thought that if I had anything I needed to say to him, I’d better do it sooner rather than later.
When Dad was in his right mind, dialysis was his hard no, line in the sand. And I guess the current blood tests suggest dialysis might be in his near future. Mom’s email was clear that he did not want to do that. Last night, I tried to google life expectancy if he refuses dialysis, but could only find predictions for people who quit dialysis, not those who never start.
Mom talked a bit in her email about how, over the years, she and Dad had discussed all the possible eventualities. “For your dad, he was hoping kidneys went first as it is a relatively painless death. Again, I think it is possible that this is a false alarm and that things could stabilize. However, the test results were a jolt of reality, so I thought you needed to know.”
She’s having him evaluated for hospice care. My mother, who wanted to do everything herself, is opening the floodgates.
I’m not processing much in real time, but the thing that has come across the most clearly in the last couple of hours is how humbling this is. I have spent years feeling like I had a grip on how this would go down, that it would be a relief for it to happen, that I would be sad but not conflicted. And truthfully, pretty superior about how I understood life and death. He was never going to get better.
Last night, I kept trying to tell myself I was so sad because I couldn’t hope for Dad to stay or go, and not having hope for either was the piece gutting me.
But the truth is, I plain don’t want him to die. Even how he is now, and what his care has done to eviscerate our family, and how each moment with him is heartbreak, and how angry I am, and how resentful I am that Mom chose him over us, and how shitty everything turned out, I still don’t want to lose what’s left of him.
I am so surprised.
Hey Anne, all I’ve got is these lame internet hugs, but I’m thinking of you <3
Gutted. The last sentence so sums up where I still am after losing my grandmother (not nearly as intense, of course). The level of grief I feel continues to surprise me almost daily. I wish I could help, or ease this journey but… cheesy internet hugs it is.
Oh! And travel plans! This year, instead of our annual trek to the Carolina’s to see aforementioned grandmother, I am flying my girls to Seattle and then British Columbia for spring break. Hoping for spring skiing and goggle tans to heal hearts!
This shit is hard and heartbreaking and I’m sorry.
Losing someone sucks. It just sucks. Death isn’t any easier if it comes slowly or after a balls to the walls scary fucking ride followed by crashing in an explosion against a bridge (how my brother went). It isn’t easier if it’s expected, if it creeps up like a thief in the night, or if it’s handed to you by a friend in a glass of wine. Death usually steals away love and leaves things no one wants behind. It leaves you sitting with all these feelings and no way to put them where you’d like. I’m sorry he’s not doing so well. I won’t say “it happens for a reason” or some other banal bunch of bullshit because just the fact that it happens at all fucking blows. I will say I care about you. I wish you a shit ton of happiness. I am here. I’m listening (or reading as it may be) and I’m not going anywhere. Sending you internet hugs and love and strength and all the mushy shit along with some of the darkly funny shit because that’s how we cope in my neck of the woods. (((Squishy Matronly-Bosomed Hugs)))
I relate so much to thinking I will know how I will feel and feeling smug that I get it and am well prepared and being surprised when the time for the feeling comes and I feel differently and I am not ready and WTH do I do with all this shock and awe? Thinking of you. No matter how mentally prepared you might have been, watching someone you love decline in health toward eventual death when there is a procedure that could prolong their life (that they refuse to have) is freaking hard.
My mother in law passed away 6 years ago and that last sentence was just what we felt. Have you seen A Monster Calls? It is exactly like the nightmare in that film, myself and my husband cried so much watching it that our eyes were swollen.
Another lame internet hug. I won’t try to be as eloquent as others, but I am thinking of you and sending strength for this part of the journey.
For the record, I think internet hugs are awesome. Not just in a ‘aww,
that’s nice’ kind of way for me, but in the ‘I get a little sunburned from
IRL human contact, and this is exactly the right level of affection that
lets me grieve without feeling overwhelmed.’ So, sincerely, thank you!
xo,
A
Holy shit, she said with classy eloquence.
This is awful. And how you feel is so very understandable.
I’m glad your mom is looking at hospice care, and that must be hurting her a lot too.
I’m so sorry, hon.
I thought I was ready for my dad to go, he was really sick and had been for a very long time. But I wasn’t and it’s been 13 years this month and now I’m crying so you know how I feel about that. Love and hugs, all of this sucks so fucking much.
All of this … the thing about grief and loss is this, it tears a hole in your reality. It shatters the fabric of your life, shaking everything you ever knew into a new, nearly unrecognizable image. But you are still in there, and, perhaps that is what hurts the most.
Wishing you as much peace as possible.
Always with you, even though it doesn’t really help.
That speaks of your love for him, and that’s okay.
I’m glad your mom is finally to the point of asking for help, even if it is signalling a change.
I am not a hugger IRL, but I am sending all the internet hugs and good thoughts to you. I am an RN (and work mainly with a geriatric population). I know how hard it is to come to terms with where things are at right now (and for the near future) for your Dad, Mom and you and your family, but I am so grateful that your mom is honoring your dad’s line of no dialysis. I have had patients who are ready to move on to the next thing (I have come less to look at death as a hard stop end and more as just a natural progression to whatever comes next) and have indicated that they do not want “insert lifesaving measure here” and their family refuses to hear their request or even worse, does not honor their request when the patient is unable to make decisions for themselves and it breaks my heart because although the patient may still be living, what is the quality of that additional gained time? Hospice is a wonderful thing, I have such awe and respect for hospice nurses (we have a small in-house section of hospice rooms on our floor for patients that want that option, so occasionally I get to take care of hospice patients/interact with the hospice RN’s that oversee the care). The feeling of the hospice patient’s rooms are so peaceful and almost reverent. I wish that there was an easy way for those of us that are left behind when someone passes on, but it is what it is. I hope for comfort for you and your family in the coming weeks.