Emotions

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.