Living without Bob and "Al"

Sheri feels like a fish out of water.

Living with Bob and "Al"

Sheri woke up this morning realizing that even though she has been involved with this disease for so very many years, and she has read and tried everything she can to stay educated, the reality is that the ugly word "denial" has managed to make its way to the forefront. She and the girls still believe that "if someone would just..., or if his hands were busy with ..." (We ladies are problem solvers.) The problem with that gift is that Alzheimer's is not a problem they can solve. It is a progressive, terminal disease. Sheri knows she and girls have done everything reasonably possible to keep Bob and "Al" safe and cognitively present. As with all diseases she is going to have to turn this over to God . One day at a time is all we are promised.
Sheri's heart hurts.

Living with Bob and "Al"

Sheri had a light bulb go off in her head early this morning. She realized that she has a certain amount of guilt about wanting to enjoy even the tiniest part of life, without Bob by her side. Almost like she feels she has no right to do so, knowing that "Al" is not allowing Bob to do the same. She does not need to hear that Bob would want her to enjoy her life, she knows that, but feelings are just that... feelings.
Sheri promised she would be honest on this new part of her journey so there you have it.

Living with Bob and "Al"

Sheri went to see the boys this weekend. "Al" knew Sheri looked familiar but was not sure why. Sheri is slowly accepting that Bob 's safety is more important than Sheri's name.

Living with Bob and "Al"

Emergency Room Visit final thoughts

Sheri knows that nurses and doctors are amazing people to do what they do everyday. Every person at the hospital was caring and friendly. She knows that in emergency circumstances the physical well being of the patient is first and for most, and she knows that even with the best of education these things would still happen. What she thinks might be able to change is to make sure if some one comes out of a locked Alzheimer's ward where they require 24 hour supervision that there is some kind of coding system, maybe a red , yellow, or green dot, that represents this persons cognitive ability such as red means total assist and so forth. This info would be on whatever they sent to the hospital with him or pinned to his shirt or something like that. Then the same color dot goes up on the board with their name. I mean a large dot easily recognizable to all that enter the room.

This is just what has come to mind since this experience. One might think that "well this person was handed over to a medical facility, 24 hours hour supervision is their whole purpose." As you can see from the long recount of this experience a person with these types of impairment, 24 hour supervision means something very different. Sheri know many doctors and nurses and she loves and respects them all. This is just an area that needs more education and with the expected increase in these diseases, it needs to be soon.

 

Living with Bob and "Al"

The sun came up, Sheri woke up, it is a brand new day. Bob and "Al" are safe. Sheri needs to Pause, Praise  and Pray.
God is good.

Living with Bob and "Al"

Sheri realized that she has not shared much about the day she placed Bob and "Al", she really has not been able to before now. But as usual, she went in with a plan.  She sent "the boys" off to "work" (code for Adult Day Center)  and then Sheri and girls got the room set up the morning of placement. While the girls were doing the finishing touches on the room she went to the Day Center and picked up "the boys". She was sick to her stomach the entire time. She did not say anything ahead of time, "Al" would not have understood anyway. When they walked into the faculty Sheri started making complimentary statements about how beautiful the place was and and admiring the pictures on the walls, the boys agreed with everything she said. When they got through the secured doors on the level where his room was, Sheri stated matter -a- fact-ly but with a big smile on her face that "this was where their new apartment was", showed him the room and said that "her room was right down the hall". She took him on a tour of their new "living room"( common area) commenting on how large and spacious it all was, "Al nodded and smiled in agreement. All the while Sheri thought that at any moment she would burst into tears, and throw up,  but held back by operating on auto pilot. The girls chatted with their Dad and left in the afternoon much like they would have at Sheri's real apartment. Sheri stayed through the afternoon and evening and colored with "Al" and eventually put him to bed in his new apartment. Bob and "Al" were safe. Then Sheri went home...and wept.

Living with Bob and "Al"

Sheri has been trying to go see "the boys" in the morning because they seem happier then. When she got there yesterday "Al" was sitting at the dinning room table. The aids had give him his duplo blocks and his coloring project. The aids mentioned Bob had made friends with one particular man that is wheel chair bound and can not really speak, and his hands shake terribly. So the two of them were together at the table enjoying coffee .The aids realized the gentleman that can barely speak was also trying very hard to build with the blocks which was wonderful. As the aids were getting breakfast ready they explained to "Al" that we needed to clean up the blocks to make room for the food, so Sheri started to help put them away. The sweet gentleman tried to help as well and started to put his hand in Bob's coffee cup. Sheri started to stop him when she realized the sweet man may be a little more with it than "Al" as he retrieved a very wet duplo block from "Al's coffee cup. :)

Living with Bob and "Al"

Sheri's eyes are swollen shut....but Bob has a new home and he is safe.

Living with Bob and "Al"

Sheri can not think of a time she felt this numb. She has found a location for Bob and "Al" and she can not breathe. She feels like she is operating on auto pilot mode. In many ways she guesses she is. None of this is or ever was in her hands.  She was never a fan of flying and she feels like she is going to throw up, even with God at the controls. Trust does not come easily.

Living with Bob and "Al"

Sheri is very touched by the outpouring of prays and support. Unfortunately the roller coaster ride of emotions will continue for a while regarding a placement location as the place she had chosen can not provide a shared male room that would be covered by the Elderly Waiver Program, for which Bob is a part of. The other option being to pay  between $500 and $1300 out of pocket over and above Bob's social security. This not feasible. So Sheri will continue to put one foot in front of the other until she can make a new plan.  Sheri does not want to take advantage of all your prayer time, and she did mumble and grumble to God a few times yesterday...but she would not quite call it being on speaking terms yet. So please continue to pray as you see fit.

Living with Bob and "Al"

"Al" out did himself yesterday at "work" (code for Adult Day Center) . Bob had just existed the restroom and as Sheri and one of Bob's "employee's" were trying to get his coat on him to go home, "Al" leaned over and lifted up his pant leg to release a stashed domino... which also released three more stashed domino's and a pretty yellow marker. :)
Hmm

Living with Bob and "Al"

There have been many difficult changes in "Al" and Sheri has moved her line in the sand many times, but she has been looking at different options for placement. She has been trying to take a logical approach, but honestly there are no good choices here. That is not to say there are not good places, she just means that no one should ever have to make a decision between self preservation and  knowing a choice you make will bring about a substantial decline in a loved ones life. Sheri is trying to be honest about her feelings. She knows others must be struggling with this as well. She hears over and over from her readers that they appreciate feeling connected with her on this journey, so Sheri is going to continue to share this process here. Please know she is not asking for pity about the situation she knows it is what it is. Her emotions are raw right now and she is human. As hard as it is she will continue to Pause, Praise and Pray.

Living with Bob and "Al"

"Al" has entered a stage she has not heard  much about. Sheri thinks she will call it the destructive stage. Everything Bob touches "Al" try's to tear apart, either with Bobs hands or with Bob's mouth. This is placing new parameters around what she can do to keep "them" active and engaged. He no longer recognizes objects so even Sheri's laptop has been fair game. Sheri is a problem solver by nature so ...game on. :)

Living with Bob and "Al"

Sheri tried to be as prepared as possible for the wedding and brought as many distractions as she could with her, but "Al" liked the pine cone decorations on the table the best. So much so that Bob's pants pockets were stuffed with them. :)

Living with Bob and "Al"

Sheri is overwhelmed with joy that her Father and Brother are here to help celebrate Daughter Number Ones wedding. She is very sad that her Sister could not make it, but like her Son and her Mother she will be with them in spirit. Tomorrow is the big day! Sheri is going to live in the moment and try not to worry TOO  much about Bob and "Al", Sheri will make enough memories for the both of them. :)

Living with Bob and "Al"

Sheri had an a..ha moment yesterday , and a true Thanksgiving blessing. A peek at who Bob is under "Al". "Al" has been hoarding poker chips from "work" (code for Adult Day Center). Sheri though it was just another "pretty thing", so she bought him some and gave them to him yesterday. "Al" was very excited and immediately went into hoarding mode. Stuffing them in every possible place. Sheri was taping because he started singing, God had a different plan for a memory for her. This was early in the day before the "behaviors" set in.Watch this video and listen carefully... it became clear why "Al" is hoarding poker chips for Bob. There is also a u-tube link below if you cant see it, please watch to the end.
Dear sweet man.

Thanksgiving Blessing link click here

Living with Bob and "Al"

One of the losses a spouse of an Alzheimer's victim has to deal with is the loss of their companion to provide comfort and compassion. Sheri's Mother passed away rather unexpectedly a year ago today. Bob and "Al" have no idea. Sheri has to be careful to not show her emotions because "Al" does not react well if Sheri is not upbeat and cheerful, and yet that mask of pain Sheri keeps talking about is barely under the surface today.
Miss you Mom

Living with Bob and "Al"

Dear sweet man. Bob had been working on his nuts and bolts for quite so time, when Sheri noticed hes was mumbling under his breath some shall she say not very nice words. Sheri asked " Whats wrong Bob?" "Al" responded with a deep scowl of discouragement on his face and in his voice, tossing the nut back on to his tray "There something wrong with that one it has a hole on both sides, it's useless."

Oy vey :)

Living with Bob and "Al"

When Bob was very young he ran his pointer finger though a saw one of those round high speed ones. The tale always seem to be one of Bob's proudest moments. May times he would recount the mess, and the trip to the small town doctor and how the doctor said " Well, we will try to fix this but if not, we will have to cut the finger off." That accident left his finger bent and the fingernail has a heavy ridge right through the center as the finger was split down the middle (sorry I know it is really early for such a visual description) anyway, while riding home from "work" (code for Adult Day Center) yesterday, Bob was running his hand over this sharp ridge in his nail. Sheri asked him if something was wrong, "Al" replied "I an not sure, but there is a rough line on this nail I have no idea what happened here, do we have any sand paper?" Losing one's memories of one's self has got to be the worst kind of disease.
Sheri needs to pause, praise and pray.