Update, August 19th

A lot has happened over the last few days.  Hospice is in place, and the nurses, aides, social worker, and chaplain have all visited dad.   Now that everyone has met him, the aides will come in each weekday morning to help get him going - shower, shave, breakfast, etc.   The nurse will come in twice a week, the social worker and the chaplain once a month, or more, if we need them.  Had a good conversation with the social worker today, and then a nice email from the chaplain.  She said dad was pretty coherent while they visited, they read scriptures and prayed together.   She said that dad was a very sweet and spiritual man.  FYI - they are non-deminational, and are aware we are LDS.   Dad needs everyone he can get, to help him be comfortable and at peace with what is coming down the road.   He has been eating sporadically over the weekend, is sleeping more.   I am working with the director, Ryan, to get him moved up the hall, so he is closer to the nurses and aides.   This will allow for more eyes on him, as there will be more traffic back and forth.   I think he is so far down the hall now, he doesn't get as much attention.  The social worker talked to me today, about starting to get some things planned for when dad leave us.   This makes sense, because we know it's coming, and when he does go, it would be nice to be able to spend time as a family and not to have to rush around making the plans then.   I brought it up to mom, and as difficult as it is, she agrees.   She will start thinking about things, and then we will likely involve the rest of the sibs and at least get a few things planned out.   I will continue to post updates on everything.

Hospice in Place

Hospice is in place, the nurse went to dad's place today to do an assessment.   The R.N. will go in twice a week, and aides will go in each morning for about an hour.   They will help dad shower, get him dressed, check all his vitals, etc.    They will also take over the medication management.  If dad falls, Chancellor is supposed to call hospice, and they will come and do an assessment.  He did fall yesterday morning, but didn't seem to be in pain, although he did have a nasty bruise on his right arm.  He fell in the dining area, tripped over his feet.  I got to Chancellor a little early, so walked down the hall.  There he was, at the end of the hall, in one of his usual spots.  Sound asleep.   As I walked toward him, I noticed that he had lost more weight, even from when I saw him a week ago.   The shirts and pants drown him, and his belt is on the last notch. It is tough to see him so thin and gaunt.  I rubbed his arm and called him pop.  He opened his eyes and asked me why I called him pop.  Told him he was my dad, I was his daughter.  He said, "Really?  That's nice."  He then went back to sleep.  A few minutes later, he said he was really tired from working.   I asked if he had been working hard all day and he said yes.   Fred and I met with the clincal director of the Hospice group - Hospice Care of Northern Utah.  We felt really good about their approach, and signed him up.   This was tough - here we are, talking about end of life care for my dad.  I thought moving him to Chancellor was difficult, and this is right up there with that event.   I have to keep reminding myself that it is dad's comfort that we must think of, but it is still really hard to know that he won't be with us much longer.   He is definitely in the final stages, and will probably be really happy when he can be the real Charlie again. I will continue to post updates.

UGH

It's official.  Dr. Nelson feels that dad is ready for Hospice.   This makes it real, even though we all know it has been creeping up on us.   Hospice will help him be more comfortable, and we can stagger the hours so someone is with him 1 on 1 a good part of the day.    Will be contacting companies to get some ideas with schedules, etc.   On one hand, it is hard to think of him not being with us.  On the other hand, you know his quality of life is non-existent and he is uncomfortable.  Don't like this.

******************
Update, August 14th.   Have an assessment set up with a company tomorrow, at 6 pm.   Have gotten some great recommendations about this company, and the clinical director was great on the phone.  
More to follow.

Update, August 11th

This past week, dad has declined quite a bit.    The last 3 days have been especially difficult.   He doesn't want to eat, all he does is sleep, and when he is awake, won't come out of his room.   Today, Sunday, he did get up and get dressed.   Has eaten all 3 meals, although when I spoke with the aide this morning, he had to rest for about 15 minutes when he was about half way down the hall to breakfast.  Dad's room is at the very end of the hallway, and it's quite a clip.   He has qualified for hospice, so I am calling the doctor tomorrow, to see how to get him signed up for this.   This will mean that someone will be with him more, and make sure he is comfortable, and help with his needs.  Chancellor is not set up for 1 on 1 nursing, and he is at a point where he needs to have a little more care.   It is tough to see him decline, especially when we all know he would rather be done with all of this.  I do wish he would go soon, so he can be Charlie again.   We don't get to make that choice, though.  We can just hope that he isn't in a lot of pain or discomfort.
*****Just talked to Eric this evening, and they went and saw dad.  He ate good today, but was very disoriented and combative.   Eric was helping the aide get him ready for bed, and dad was swinging at both of them.  Telling him he was going to smack him.  It was tough for Eric.

Mom goes to the doctor tomorrow to get her arm checked out.  She is ready to go home, and once we get the ok for the doc, we will get things set up for her to get back home.   There is a lady from the ward who will help mom, and the relief society will have meals brought in, and also take her down to see dad.   Just as mom fell, she was getting used to being alone.   Although she says she will be fine, we do wonder if it will be more difficult for her mentally - she is used to having more people around now.  However, she has to at least try living alone.  I think the anesthesia has done a number on her - she is so much more forgetful and confused since her surgery.  I've been told this is common, especially in people her age, so we will have to wait and see if clears up somewhat.

HAPPY 85th BIRTHDAY, DAD!!

Update, Chuck and Shirl

So, this Friday, August 9th, is Chuck's 85th birthday.  Who would have thought he would be where he is for this birthday, huh?   He has been steadily declining, in that he has been sleeping more and eating less.   He did have a urinary tract infection, and that could have been part of the problem.   I received and email from Sallie today and she said dad seemed to be feeling better.    Will be sending a balloon bouquet on Friday, since I won't be able to see him that day.   I'm sure someone up north will be stopping in to see him.  I did see him this past Saturday, and he was really groggy.   He woke up a few times, and when I asked him what he'd been up to, he said, "Oh, just been workin' really hard around here."  I was there for about an our and he slept most of the time.  It was nice just sitting there with him, though.   Every once in awhile he would open his eyes briefly and look at me, then they were closed.  Don't know if he was really "looking" at me, though.   When I left him, I kissed his head and rubbed his arm.   He perked right up, asked why I did that?   Told him I was his daughter, and that I loved him.   He asked, "I have a daughter?"   I told him he had 2 daughters and he said, "Well, I'll be."  It was tough  to leave him, I have to say.   I think I could have sat there for a few more hours, watching him sleep.   But, had to leave.......

.........to spell Ann, because she had been staying with mom for a few days.  For those of you don't know, mom did have surgery on her arm last Tuesday.   She is staying at Eric's, and Ann came down last Wednesday, because Eric went to San Diego to get Kelby.   I stayed with mom Tuesday night, and through Wednesday afternoon, until Ann made it down.  Ann stayed with mom through Saturday afternoon, and I went back up.   Mom was in a lot of pain the first few days, and had a tough time getting all the anesthesia out of her system.  She is getting around pretty good, and goes back to the doc next Monday for a check up.   Depending on what the doc says, we may get things set up with some help at her home.   Honestly, we are not sure if she will be able, or even want to live alone.   When she fell, she was just getting used to being alone.   I think she enjoys the company, but also wants to be on her own.  The only way we will be able to see if it will work, is to have her try it.   We will have to take it a week at a time.   More to follow.

As dad's birthday approaches, I realize how lucky we have been to have him with us for this long.    I miss the real Charlie, and sincerely hope that he will soon be able to find peace and not have to deal with that jumbled Alz mind.  Be the real Charlie again.   Until then, we have to cherish that small little glimmer of the real Charlie that still shines through every now and then.  

Please send good birthday thoughts to him, and remember the fun times we have had with him over the years.

Love that man.