News, Information and Ideas on how to deal with hearing loss in a hearing world. Plus a few other topics!
Thought I'd share with you a few of my observations over these past 6 months. We've all had friends that have told us of the trials, challenges and joys of having older parents. Over the years, Brian and I have listened, hugged and consoled many of our friends that have lost parents or begun navigating the journey of elder care. Little did we know what they were really doing. It's one of those things in life that no matter how well you listen, unless you are in the same boat, you really have no understanding of how this affects your life as well as the lives of your family members.
Last August 29th, we got a phone call from the Independent Living Campus that Brians' Mom has resided at for over a decade. She decided to move there in her 60's and was very content in the fact that she had made the right decision that would transpire into the right care for her as her needs increased. She had her own apartment, could come and go as she pleased and was comforted in knowing that quite a few of her friends were also transitioning to this type of living arrangement. She was also very proud of the fact that, in her view, she had put things into place that would make the next steps easy for all of her kids. She even bought into the Lifetime Rights program so that she would always be guaranteed a place in the assisted living building and if needed, the nursing home/rehab facility. These were all her decisions. While she told us of her desires in person or via letters, we really didn't give it much thought at the time due to the fact that she was a very independent, strong woman. Little did we know that this would later be considered our 'quiet period'.
Mom had been having some problems over the past couple of years. She knew that her balance was not as good as it had been and with us watching, she did what she wanted to do when it came to dealing with the medical things in life. While we didn't always agree, we also respected her decisions. Back in 2001, she asked Brian to be in charge of her finances when the time came that she felt she was ready for someone else to handle this. She also had many talks with me about becoming her POA for Healthcare. All of the paperwork was in place and we all felt that we had a handle on things. Little did we know.
The phone call came from the Chaplain of the facility. Mom had been found in her Independent Living Apartment. From her schedule as well as her very well known daily routine, it was determined that she had been down for a few hours. We would have questions later as to why it took so long for someone to take a minute and go see why she had not shown up for her normal activities. When someone did find her, she was determined not to be transported to the local hospital. She had gone this route after a minor stroke in 2009 and unfortunately, the local facility usually always ended up having the patient transported to another bigger facility via ambulance 30 miles away. It's one of the things residents that live in rural areas know will happen no matter how new or good their local hospital is. Add in the fact that this is not a large population area and you can imagine the challenges when it comes to medical facilities. People don't realize that if you don't have a large resource of trained people, you can't handle everything that comes into your facility.
Due to her having suffered another stroke, she had spent most of that time on the floor of her apartment with a head injury due to her fall. We can't imagine how scared she must have been, yet still had a hard time comprehending why she didn't scoot herself to the phone and push the button for help. It was obvious that her ability to make common sense decisions was lacking at that time. She spent 4 days in the hospital and was discharged to the nursing home/rehab area of the local retirement community that she had lived in. We spent those days down there observing and getting used to our new roles. We had all of the paperwork with us and talked until we were blue in the face with any one that would listen to us on what her wishes were and who we were. In the end, it didn't really matter. We would spend hours at her bedside in the hospital to see the 'doctors' and finally realized that you never knew when they were going to show up. Usually, there was more than one, since hospitals now are using what they call, 'hospitalists'. That means that your primary care doctor doesn't come to the hospital to see you, you get random doctors that work for the hospital and then the reports are sent to your primary care physician. And yes, lots of things get lost in the communication between all of these people. It's frustrating and you soon learn to be on the defensive when it comes to anyone walking into the room and deciding what is best for her. Not a good place to be. This is when we started to realize that being able to follow through on her wishes was going to take a lot of diligence on our parts. It also brought to our attention all of the cracks in our medical care. While it's hard to place blame on just one thing, it's obvious that we have a lot of problems that no one is addressing. Common sense, at least in our view, is not being considered a part of the solution for those making the rules.
Over the next few weeks, I'll be talking about some of the challenges that we faced and are still facing. Mom wanted to write a book on all of this, but, as we looked into what was available out there, we decided that our goal was to try and get information out to those that are in the same situation, not make money or start another organization or support group. That is another whole quagmire once you start looking for help and answers. Lots of organizations out there as well as medical professionals. All of them with different opinions and 'tips'. Again, you need to rely on your common sense. You also need to keep the communication lines open with all of the family members that are involved. We are now seeing that by being a part of Moms' journey, it's turning out to be one of the best ways to cement those family relationships and know your relatives in a way that you never thought possible.
As Mom always says, 'Carry On and Be Brave'. It's going to be fun to hear her perspectives on some of her journey and with her permission, I'll be sharing some of that with all of you.
Have a great week!