It’s been awhile since we’ve posted here. Miraculously, dad recovered from his brain
bleeds. He went back to his nursing home
and was put on hospice care. We visited
as often as we could those first few weeks.
And it was so hard to see him like that.
He was practically comatose in his wheel chair. He couldn’t move his legs and needed a
mechanical lift to be moved. He could
barely talk and could sometimes manage one word delayed responses. He could sometimes feed himself, but mostly
could not. He slept most of the time and
was often laid down by the staff to sleep for large parts of the day. Sometimes his eyes would tear up, and we
wanted so badly to know what was going on inside his head. What was he feeling? Did he understand any of this? I think this was just a physical sign of the massive
pressure in his head. He should have had
one hell of a headache, but he didn’t let on that he was in pain. We brought in a priest to administer the
anointing of the sick sacrament, and when we couldn’t visit we called daily for
updates.
The days turned into weeks, and he hung on and we saw
gradual signs of improvement. An
occasional sentence would be spoken, moments of clarity, more movement,
increased ability to feed himself. And
then one day, about a month later, I got a call from a very excited nurse who
had just witnessed seeing him out of his wheelchair walking. As if nothing had happened. I really believe that everyone’s prayers
brought him back.
We were able to spend several more months being able to
visit with more conversation and his upbeat spirit back. We still never saw him up and walking, but
now he could push himself around in his chair and participate in
activities. He looked so much better.
Problem is, he still has a brain disease and he is still
declining. And it’s becoming more
evident within the past month. So we are
going to have to go through this all over again. I just hope it’s a little more peaceful, it’s
not as hard to watch the horrible debilitating symptoms, and we aren’t left
with making such gut-wrenching decisions this time around.
Strangely enough, he just graduated from hospice care last
week. They gave glowing reviews that he
has improved so much. And he has, up
until this last month. But for the last
two visits, he is less and less the upbeat person, making conversation and
trying to wheel himself around. I worry
there are so many staff changes going on at the Veteran’s Home. Instead of seeing the same doctor weekly,
they dropped their services and he only sees a doctor (who doesn’t know him) as
needed. He does see a rotating staff of
nurse practitioners (who also don’t know him).
His social worker who we have loved from the start 3 years ago, has
changed jobs and we have yet to meet the replacement three months in. She doesn’t know who he was before this
accident, and she doesn’t even work on the same floor he is on. And now the added layer of care with the
hospice team is rolling off.
When I went to see him this week, I found him in his wheel
chair just outside the cafeteria door, sleeping. Like he had just finished breakfast and that’s
as far as he got. I didn’t disturb him
because I had a meeting with some of the staff.
An hour later I found him in another area of the hallway, sleeping
again. I asked a nurse if he was
alright. She said, “oh yeah, he sleeps a lot”.
Well this is news to me, and I honestly hadn’t seen this since after his
fall. So I took him outside for a
walk. He perked up a little, but he
still continued to doze on and off. He doesn’t
seem to talk as much, and the staff confirmed in the meeting that he basically
gives one word responses and has appeared to decline cognitively. But then they continued to say how great he
is doing physically, and that he’s improved so much from the fall. I am really hoping it was just a bad day
these past couple visits, but I didn’t get that warm fuzzy feeling after I left
the meeting.
This visit started to get to me more. The disease and the progression has been very
hard to witness. But I feel like I haven’t
really let it sink in. Now he just looks
tired, defeated, and sad. I picture him
sleeping in his wheelchair wherever he ends up during the day. Now he blends in with all the other 90+ year
old patients that this new staff is used to seeing. But he’s only 67 and this is not him. It’s really unfair, and it’s starting to hit
me more.
All I have left is my faith that better things are in store
for him. I used to worry about how awful
he was, and would he make it to Heaven?
Even after I knew it was the disease, did God understand? But now I really feel that when God answered
our prayers and he recovered from those massive brain bleeds, when the
neurosurgeon said he hadn’t seen anything like it, it brought me a feeling of
peace that he is with him.
