Living with Bob and "Al"

The beginning of the end Chapter 15

Sheri assured the women she did the right thing, and proceeded to explain to her the emergency room visit and all the tests Bob had done. The aid was fixing Bob's sheets and mumbled under her breath, "well that would have been nice to know."
Sheri took a deep breath, and then told herself to breathe in through her nose and out through her mouth.

Living with Bob and "Al"

The beginning of the end chapter 5

The nurse said they needed to start an IV, "the boys" were restless. In the previous week or so Bob's eyes were closed most of the time, whether sitting or laying or being fed ,but he was also doing very jerky movements with his arms, reaching and grabbing at the air and any thing in reach. Needless to say getting the IV in was a challenge. The ER was busy that late afternoon and there was no one available to help Sheri keep Bob in the bed as she waited for the doctor to assess "the boys". Sheri was frustrated because she was not even clear why they were in this ER battle. The nurse already had an order for some  "calming medicine". Sheri prayed it would kick in soon, because "Al" was already getting his grasping hands tangled in the IV line , Sheri knew it would only be a matter of time before "Al" pulled the IV right out of his arm.

Living with Bob and "Al"

Sheri has always said she would be honest about this journey, and she has done her best to do that.  The whole system needs to be overhauled, she does not know what that means or what it looks like, but the gaps in communication are wide. There are truly loving caring people working and caring for "the boys" for which she will be forever grateful, but the system is truly broken.
Sheri needs to pause, praise and pray, she knows God will hear her prayers through the fog.

Living with Bob and "Al"

Sheri thinks too much has happened in the last 48 hours to write here right now, so for now she will just say that Bob and "Al" are now on hospice care. When she catches up on her sleep and can think clearly she will try and find her voice again. She is struggling to pause, praise and pray.

Living with Bob and "Al"

Sheri hates this disease, each change, each loss, she HATES it.  When she went to see "the boys" this weekend "they" were sitting on a couch with one shoe and sock on, and one shoe and sock off. The shoe that was on.. was on the wrong foot. Apparently, much like his glasses that he can no longer wear ("Al breaks them in a matter of a day or two) "Al" will no longer leave Bob's shoes and socks on and removes them repeatedly with in minutes. :(
Sheri needs to Pause, Praise and Pray.

Living with Bob and "Al"

Other than immediate family, Sheri does not really like taking pictures of people. You see Gods beauty in nature is real and pure. People on the other hand, can pose and smile even when there is a dismantled heart at the other end. 

Living with Bob and "Al"

Sheri took some time to refresh her mind and soul in the 7 degree temperature this "Spring" in Minnesota. She needs that internal focus of looking through the camera lens to know that God is still with her on this journey.
Sheri needs to pause, praise and pray.

Living with Bob and "Al"

Sheri spent some time visiting with Bob and "Al" on Easter Sunday. March is always a rough month for Sheri. Their wedding anniversary, Bobs birthday, and now his only brother (whom he loved dearly) passed away in March as well. Sheri is trying to embrace that April is the time of rebirth and to live in the moment. Things have really changed in Bob's abilities, so remembering to capture, and be grateful for what moments she can, has become paramount.
Sheri is going to continue to pause, praise and pray.  

Living with Bob and "Al"

Sheri and the girls celebrated Bob and "Al's" 75th birthday together yesterday. The activities coordinator made "the boys" a chocolate cake! So very sweet of her :) All you have to say is chocolate to Bob to get "Al" to step out of the way for a very brief  moment. :)

Living with Bob and "Al"

Today March 18th is Sheri and Bob's 29th wedding anniversary. This year she did not hide from it. She found the cassette tape of their wedding vows and brought it with her to the facility where "the boys" live. She sat beside him wearing both of their wedding rings. She explained what the tape was. She played it through with no recognition from Bob, she did not expect any... she did it for herself. She is trying hard to reconcile her marriage, feelings of rejection, abandonment, and loneliness in the years before Bob was diagnosed. She paused. she praised, she prayed, she wept.

Living with Bob and "Al"

Dear friends, this life we have on this earth is so very short, and our Alzheimer burdens are many and very heavy.  Sheri wants to tell you though, if you wake up and hear the birds singing, God has blessed you greatly...cast your cares upon Him.

1Peter 5:7
Cast all your cares upon Him, for he cares for you.

Living with Bob and "Al"

Sheri wonders what "Bob" would say, if his words were all his own.
Would he say "Sheri when you leave the room... I feel all alone".

Would he say " I am sorry, for the things I piled around"
I am sorry for the things I lost, like the gift you never found"

Would he say "thank you', for taking care of the family
Would he say "your eyes look tired', and wipe the tears he see's?

Would he know that open arms, are an invitation to hold her tight
Would he know she needs him in the darkest part of night.

Would he say he loves her like the day that they were wed
Would one look be enough to feel the love even with words unsaid

Sheri wonders what would Bob say if his words were all his own
But Bob's voice is a whisper...and Sheri feels... alone.

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"

Well it is January again. Sheri does not make resolutions. Not that there aren't things she needs to change about herself, there are ... but Webster defines a  resolution in two ways
 1. A firm decision to do or not to do something. 
2. The action of solving a problem, dispute, or contentious matter.

Neither of these seem attainable right now, maybe next year.  
Sheri needs to pause, praise and pray.

Livng with Bob and "Al"

Sheri is realizing just how deep she has been stuffing her emotions for so many years, it was a protective skin that allowed her to continue to face each day.  She knows that sounds a little weird, but she has been in what she refers to has "survival mode" for over ten years, and almost a year after Bob's placement the dam seems to be bursting ... daily. Excepting Bob's recent aggressive behavior and the major slide he is in from afar, and knowing she can not fix this is finally becoming real to her. Thanks to praying friends and those walking with her, she is still hanging on by a thread and often can not write her feelings away. Sheri knows she has a purpose in this life, God is carrying her through this part of her journey, because she is definitely to weak to walk.

  

Living with Bob and "Al"

With all do respect for the caregivers working in facilities, Sheri thanks you from the bottom of her heart, she know this is not your fault, and many of you have a deep love for caring for our loved ones. She is learning however,  that "Memory care" can be a loose term. Sheri needs to think about solutions and help advocate for better staffing, better pay and better dementia training for caregivers, along with better communication to families. It takes a village to care for an Alzheimer victim. Sheri needs to pause, praise and pray.

Living with Bob and "Al"

 "Al" is eating almost all food with Bob's fingers now.
Sheri hates this disease.

Living with Bob and "Al"

Bob is having a very hard time singing now, Sheri is very thankful she captured this about 2 years ago.
Merry Christmas to all. Click the link.
Bob and "Al" singing "How Great Thou Art" 2 years ago

Living with Bob and "Al"

Sheri is trying hard to redefine "self". But who is she? So many years of care-giving has left the pieces of "her life puzzle " scattered around on the floor. Sheri hates this disease.

Old photo of "Al" asking the cat to help with Bob's puzzle

Living with Bob and "Al"

Sheri had Bronchitis for almost 2 weeks, and had been unable to visit "the boys". She managed to get out there for a meeting yesterday. Bob has these sores that "Al" keeps picking at. They have tried keeping them covered but to no avail. While she was there she tried to convince Bob to stop picking at the sores. "Al' looked at Sheri and said " well no this works fine they just pop right out of the ground."
Heavy sigh....