Our friend took a ride in a vehicle today. That may not seem like news of any kind. It was likely to be his last ride ‘out and about’; this is the aching truth about his situation due to advanced Alzheimer’s. After this trip there will be less of an outside world to participate in, and instead more personalized care in a new home to match his growing medical needs.
This man’s agony over the past years has made me wonder how this all fits into the bigger puzzle that we call life. This type of question has abounded since the start of time, and the answers are as elusive as they ever have been, does not stop me from pondering “why”, and for what purpose does all this happen.
I pondered this last ride all day and no matter how I approached the matter mentally the same medical realities bit back. Alzheimer’s has robbed our friend of so many abilities that moving him about, as well as every other aspect of living, requires skilled nursing care. There is no more carefree banter, or spontaneous laughter. The big stage light of a life is being narrowed bit by bit to a small glow. The man who has a PhD can no longer write his own name.
Shortly after breakfast our friend journeyed from the Veterans Hospital to his new home at Badger Prairie Health Care Center. I have driven that several times over the past days as James and I prepared for the move. The city traffic and combustion gives way slightly to the country setting as Madison is left behind. But just as soon I felt that the country scenes could be enjoyed the ramp comes into view that takes off to Badger Prairie. There is not much time to enjoy the trees and flowers. But then our friend has not been really enjoying them for some time.
On Wednesday, James and I were in court to secure guardianship of our friend be officially granted. It was not the first time that James and I felt the weight of the responsibility for our friend, after all we have done everything financially and legal as his representatives for years. If we had to do it all over again, we would sign up as it remains the right thing to do.
Yet I could not deny the feelings inside that told me his child, who lives only a few miles away, never once in the last few years made contact with him, or attempted to carry any of the responsibilities. For whatever reason she dropped her father, and now even if she wanted to rekindle a relationship it is too late. The father she knew is gone to a disease that is the most wretched way to exist I can think of.
There have been times that James and I have shed some tears over being the ones that had to literally see his authority to make decisions erode as the powers that he signed over to us years ago forced our hands to insure his safety and well-being. While what he have done meets the praise of the court, social service agencies, Alzheimer’s Association, and all the medical teams we have interacted with, there is no way to describe the taking away of ones’ right to vote.
I must admit there was some humor in the court room when it was stated (again) that our friend was not to be allowed to have a gun. (Readers of my blog might grin over the back and forth of that topic with our legal counsel.)
The journey that this disease has forced our friend to take is also one that has altered our lives and sharpened our focus on how to fight for what is right.
From having his apartment fitted for safe-living years ago, to finding alternate housing as the disease progressed, to fighting for better food and more activities in that facility, to then seeking more professional care as events warranted, there was always ‘something’ out there to deal with.
From sitting in a number of meetings that lasted up to two hours or more just to have contractual agreements fulfilled, to fighting for fresh vegetables and more fruit at meal time, to making sure medications made it to the pharmacy to be bubble-wrapped, we worked to make sure no issues were dropped or ignored. We became pains in the butt to some, and friends to others we never knew the last name of.
When things did not go according to how we knew they should for the safety and happiness of our friend we went to the state agencies that govern the facilities. We are not afraid of making a scene to insure the right thing is done, especially when word was given years back to do the very best when things got tough.
There are too many people needing these memory care facilities, and too few rules and regulations governing them. No one should have to see signs like this one (below) on the walls of a facility. This one was posted after we raised an alarm about what happened to the many wet wipes and wash clothes we bought. At the end of the day I worry about all those who do not have advocates to fight for them. (Who throws away wash clothes? That is another post….)
Our friend’s increased needs started to arise at the same time my mom passed away, and my dad’s health problems started to increase. Not being able to effect positive change for my dad’s health for many reasons, I decided to make a difference in another way. James and I never looked back after we started the journey with our friend and his fight with Alzheimer’s.
That there are so many others on a similar journey is so sad.
The day we moved our friend away from the old facility I stopped into the room of an elderly lady (89) to alert her to the move. Too often faces just ‘disappear’ from these homes leaving some to wonder what happened. I did not want this lady to think death had claimed her friend.
After informing her of the move she expressed that his needs would be more tended to in another place and then asked “What about us?”
It hit me hard, and I really did not know how to respond. While we had advocated for our friend, all the residents were benefiting. When we forced the facility to follow the rules, all who lived there gained.
There is no way to save the world. Though I wish I could .
In the end, all I could offer her was one of our friend’s large bookcases for her many volumes that she still enjoys. James and I moved it to her room, loaded it as she directed with books, and closed the door as we left.
The journey that this disease forces too many to take is most dreadful. As the toll takes more and more away from a person the journey becomes even more solitary as the outer world loses meaning. At some point even a last trip in a vehicle is lost to the ravages of an illness that defies a remedy.