Sunday, August 28, 2011

11 days later...

I am really not doing a good job at this blog anymore.  Guess I have a little too much on my mind.

Al is doing much better, matter-of-fact, he MAY come home this week.  Of course we will either Hospice or Home Health Care and at this point in time it is unclear which one it will be.  It initally started out as Hospice, but the doctor at the Care Center wants AL's primary doc to sign the order.  However, because of Medicrap Al can't see his primary doc until he is discharged from the Care Center.  I feel like I am in a real Catch 22 here.  I have an appointment with our primary doc tomorrow and I will talk to him about the best way to handle this.  If he determines that Al doesn't need Hospice, all the better; I just want to make sure Al has the best of what he needs.

I haven't been doing too much lately.  It has been too hot to do too much.  Was 114 one day; and of course that was the day I had multiple appointments.  I have discovered the inside of my car can get to 140 degrees...at least that is what it felt like.  And parking in the shade in Arizona is almost impossible (cactus do not make shade trees!) 

I decided while Al was not home I would clean out our closet.  I didn't think it would take me 2 weeks, but it has.  Because of my back, I work a little on the closet, then I rest, and then the process repeats.  So far I have been able to do this without hurting my back too much.  And not it is crunch time, I HAVE to finish the closet tomorrow.  Golden Goose (local thrift shop) here I come.

 I also want to paint a wall in our guest room, but I don't think that will be done before Al gets home.  It is too hot to do anything out side...even at 6:00 in the morning it is in the high 80's and the other night at 10:0 p.m. it was still 92.  I usually don't mind the heat and much prefer it over cold, but for some reason I am having issues with heat this year.  Of course, our monsoons haven't really been great this year, a lot of humidity and very little rain. 

Friends Dick and Lano were here for a few days last week...with their puppy Misty.  Misty is Beau's great niece and is 8 mos old.  She sure is cute, but, oh boy, is she ever full of energy.  Wore me out just watching her.  Beau, has become an old man and will growl at her.  Or maybe he is trying to teach her manners, I don't know.  All I know she is so cute and I really enjoy her.  Schuster just ignores her for the most part...

More when more happens.  Hope all is well with everyone else.

Wednesday, August 17, 2011

A month later

Yep...I haven't posted a blog in a month.  This is because it has been too depressing for me to even think about posting a blog.  Instead of trying to catch up, I will just insert my posts to the Caring Bridge web site that Jenn created for AL.  Just so you know, Al is still in the "skilled nursing factility" ... a fancy name for a nursing home. He is doing better...but he is still in "that place" as I call it.  I get instantly depressed when I go to see him. 

Tuesday, July 26, 2011 11:26 PM, MST
Okay...here we go. Al has not improved .. and unfortunately, medicrap guidelines say if he isn't doing 3 hrs of therapy a day he must be moved. And I guess I can see why. Al has NO DESIRE to do any of the therapy. He did walk down the hall yesterday, but that can't really qualify for 3 hrs of therapy. Everytime they get him up he says he has to get back in bed he is too tired to do anything. Docs can't find any reason for this. My thought? He is just giving up. I can't convince him to do therapy so he can come home. Usually this is his motivation, but not this time. Now he is to weak to do anything. Can't get him to eat much. Yesterday he ate none of his breakfast; third of his lunch and dinner. Need I say more? When asked if he is in pain he will say no, not really. He is still taking pain meds when needed, but he doesn't seem to remember if he has had them or not. And ugly, ole, Alzheimers is kicking in big time. And depression as well. I have been told they go hand in hand. Great!

He will be moved to a Skilled Nursing Facility in the near future. It will depend on which one they can get him into. Splendito is close by and a very good facility, but usually there is a waiting list. He has been on the list before and never made it--so we will see.

I have to say I am hating all of this, but knew at some point in time this would happen.
 
Wednesday, July 27, 2011 8:48 PM, MST


Oh my, I NEVER expected the response on this site like I have gotten. Thank you all so very much for your love and support.

Mike (Al's oldest son) arrived today and I am so glad he is here. I didn't really realize how much a burden I was carrying by my self!

Al's condition is deteriorating. When Mike and I got to the hospital today he was sleeping, the nurse told us he hasn't been really awake all day. I think Mike termed it correctly, it seems as if he is not asleep, but just "checked out". Al acknowledged that Mike was there; but couldn't stay alert enough to carry on even a minimal a conversation with him. He isn't eating much at all, He ate part of his breakfast, none of his lunch and I fed him his dinner which he ate only a small portion. Nurse said she had to feed him his breakfast and he ate two bites of his lunch before he threw it up.

They were going to move him to a skilled nursing facility tomorrow, but that has been postponed for a day or so. Also they were going to give him the epidural shots in his back tomorrow for pain, but that has been postponed as well. Instead the hospital doctor has requested Al's neurologist to come in and has also requested an MRI and other tests. All of Al's body functions seem to be okay and all the tests on all major organs have been good as well. So the doctors are as stumped as I am on why he is like he is. I pray they get to the bottom of it soon. I asked the doctor today if it was possible that Al has just given up and his response was that at this moment Al doesn't have the mental capacity to do this, however, he possibly could have made this decision a few days ago and this is the result. Hopefully we will know more tomorrow.

Thursday, July 28, 2011 10:08 PM, MST
Al's condition continues to decline. Mike and I were at the hospital most of the day. Doctors have finally found out what is causing Al to be so sleepy and confused. He is in acute renal failure and has an acute (I hate this word) Unrinary Tract Infection. I won't go into the numbers and all the clinical details of renal failure, but it is bad. They moved Al from the rehab unit to the Telementery ward today. I had to ask what the Telementery ward was; it is for critically ill patients who need to be monitored closely. They have started an IV with antibiotics to hopefully get the UTI under control and pump fluids into him to hopefully reverse some of the kidney failure. However, his kidneys have been at 20% for over a year. His Nephrologist (Kidney doc) hasn't given up yet, and says maybe Al will bounce back. His Neurologist (we saw the oligist brothers today!!) did an EEG to measure his brain wave function today and as expected it revealed the brain waves were slow, from the renal failure. Hope this makes sense to you.
Al was a little more alert today and talked a bit more. He still isn't eating much, I fed him lunch and dinner and he ate about 1/8th of both. And I can't get him to drink much water either.

Friday, July 29, 2011 9:43 PM, MST
A much better day today. Al has improved! The antibiotics have kicked in and his numbers are much better...not great, but much better. Creatinine is down to 3.2; BUN is down to 59 and white blood cells are at 12.8. So maybe we are on the road to recovery. His kidney doctor was very encouraged today of the better numbers and said he has a chance for his kidneys to perhaps go back to at least 20% function. However, Al is a long way from being out of the woods. He is eating a little bit, so that has encouraged us. Prayers are so powerful! Thank you all again. I can't say how much your prayers and messages mean to the family and I.

Al is still "out of it" for the most part. No strong pain killers for him either. However, the kidney failure will cause mental confusion. He does know people now though, so that is a step forward. He will remain in acute care for a while; then will be moved to skilled nursing facility when the time is right. He has to be much better before he can be moved.

Mike will be here until Sunday and I can't say how good it has been for me to have him here. What a great son and person he is. He has helped me through all of this with his calm, sensible way. What a blessing for me.

Saturday. July 30

Al is getting stronger every day. Praise the Lord!!! He could actually stand for a minute on his own today. That is huge progress. However, he still isn't eating very much & still on IV. His creatinine is down to 2.2 and his BUN is 44 and white cell count is 8, which is normal.

Of course today he is 4 of the 7 dwarfs---sleepy, grumpy, dopey & doc!! He is mad at me because I won't take him home or to the motel!?!? So confusion is still here, however the docs said it would be the last to leave.
Al is smiling some which does my heart good.
Mike is so good & patient with his dad. I am sad to see Mike leave tomorrow, but ever so thankful for him being here

Sunday, July 31, 2011 10:19 PM, MST

UGH! A roller coaster of emotions day for me. I took Mike to the airport this morning...I was so thankful to have him here and sad to see him go home. He was such a huge help to me and Dad.

I got back to the hospital around 1:00 p.m. Al was doing so well. His creatinine was back to normal as was all the other "numbers". His doctors came in around 2:00 p.m. and said they were going to release him to Skilled Nursing Facility!! OK...on the road to real progress and recovery. A few days ago I didn't think we would make it this far. Al is still confused; but not as bad as he has been. And the doctors said this will take a while to clear up. AND he walked up and down the hall this afternoon with the physical therapist!!!

I have seen him bounce back like this before, but I was surprised he did such a major turn around. Amazing what fluid and antibiotics can do. AND Al has lost 30 lbs in two weeks. Can't say I approve of his diet plan though. He is eating better, but didn't eat much of his dinner tonight.

So we were told that he would be going to LaCanada SNF. The one I really wanted him in was Splendido, but they had no beds. They were to transfer him in a few hours (Waiting on transportation). I headed home to feed dogs and cats, etc. While on my way home the case manager called and said Splendido just called and they had a bed and she was trying to snag the bed for Al, did we still want it? YES! A few minutes later she called and said Splendido REFUSED Al the bed....didn't know why, just said they didn't want him. REALLY??? Can they do this? Can they just pick and choose who they want??? I DON"T THINK SO....and I will be at Splendido in the morning to find out why!

So to La Canada SNF we went. By all standards it is okay; but a nursing home is a nursing home, no matter how fancy you make it sound. It was so hard to leave him there. I cried all the way home. He is in a very small room with another man who lives there permanently and will tell you that he is just waiting to die. UGH!

Al has barely enough room; he is shoved into a corner with a bed and a night stand. PERIOD. He needs a large bed and I requested one, but we will see if we get it. He isn't happy there either. It just about broke my heart to leave him there.
I can only hope he will get better quickly and get back into Rehab at the Oro Valley Hospital center.

I need a dislike button tonight.

Tuesday, August 2, 2011 7:33 AM, MST

Al continues to get stronger. In Skilled Nursing they are less aggressive with the physical therapy; however, he is walking down the hall with assistance. Still not crazy about him being in Skilled Nursing Facility (SNF) but it did look better in the light of day. He is still shoved into a corner of a small room; and his room mate will tell you over and over he wants to die. I did get a tour of the facility today and it is very nice and clean. I guess it is what it is.

Al was less confused yesterday, knew where he was and was more communicative. He is happy that I can bring the dogs in to see him; which I will do today. His numbers are still good and his blood sugar is excellent. He is eating; just not very much. He finally did eat a nectarine that I brought him a few days ago and asked for another one. The facility has an ice cream social everyday at 1:30-2:00 and he enjoyed that yesterday. There are plenty of activities for him to participate in if he chooses to; and I hope he does some of them, however, I have my doubts.
If you would have told any of us that saw him this time last week that he would be in a SNF in a week we would have argued with you. All of us are still amazed at the turn around (even the doctors); just shows you the power of prayer. Thank you all again for all of your prayers, love and support. Without them I doubt we would be where we are today.

Wednesday, August 3, 2011 10:07 PM, MST

I could only visit with Al for an hour today....he was too busy going to different therapies! He had physical therapy; occupational therapy and group therapy. He seemed to be okay with going to all of them. And instead of having his dinner brought to his room he went to the dining room tonight for dinner. Progress!

He is still a bit confused; yesterday he asked me if I had milked the cows that morning!! Uh, yes??? Then today he wanted to know what hotel I was staying in. When I told him I was staying at home he couldn't figure out where home was. Then I figured out he didn't know he was in Tucson. After I told him we were in Tucson he understood why I was staying at home. The doctors said it would take some time for the confusion to leave; however, I think Al is doing much better than expected.
I had a chat with the social worker assigned to Al's case today. She estimated that he would be in SNF for at least 2 more weeks; then probably he would be transferred to Oro Valley Hospital Rehab for more PT/OT. All depends on how he does. I think I got him to understand the more he did for himself the quicker he would get out of the SNF and on the way to coming home.

Friday, August 5, 2011 6:53 PM, MST
Al continues to get stronger every day. Jennifer arrived yesterday & that made him happy.

We visited him today & he went to the dining room for lunch. We are taking
him dinner tonight. he is going to PT & doing well. He still remains somewhat confused but that is also getting better. Praise the Lord!,!

Wednesday, August 10, 2011 4:21 PM, MST


I just got home from a meeting with all of Al's therapists & nurses. His progress is average; still not wanting to do the more aggressive therapies, however they say that due to his back pain that is normal. They are encouraging him to get out of his room more, he tends to just stay in his room when not at therapy. Also encouraging him to go to the dining room instead of having a tray brought to his room. I solved that problem by switching him to dining room only service. They will make him go to the dining room for meals. This way he will have to get out of his room at least 3 times a day. Having said that, I had lunch with him today & it was pretty disgusting!! The salad was good..... :-/
They estimate he will be in the nursing home at least 2-3 more weeks. I am calling his doctor to see if he can give Al the shots in his back for pain. They highly recommend it.

His attitude could use at little boost. He doesn't want to participate in anything & he is pretty grumpy. Of course I can see why...I would be as well given the circumstances!! That place depresses me. Don't get me wrong, it is a nice, clean, well run & maintained facility --- but it is still a nursing home. I see all these people that once, I assume, led active, productive lives and now are dependent, in some cases, for everything, on someone else. UGH!! So sad. They asked me today if I would be interested in volunteering there and I had to turn them down. Just couldn't do it right now. Maybe someday, but not now.

Aug 17
Tomorrow Al will go in for the epidural shots.  I am praying that they will help him.  He has been good about doing the therapy this week and he is getting out of bed and out of the room more, which is good.  I took him to the cardiologist yesterday and that trip wore him out.  I have arranged for transportation for him tomorrow from the SNF to Oro Valley Hospital where the procedure will be done.  I didn't want to take a chance on me taking him and then him not being able to sit or walk after the procedure.  They say that rarely happens, but with my luck I didn't want to take the chance. 

Check out http://www.caringbridge.org/visit/alfredwraspir for the latest and greatest on Al. 

I am doing okay, trying to keep my back from doing me in.  Had pilates today and feel good right now, but I know not to over do it.  HAHAHA
So after reading the LONG blog, I hope my next one will be sooner and shorter.





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