When your medical team gives up and you are left alone with your care through a terminal illness or Alzheimer’s. by francy Saunders
George is still healing from the fall he took two weeks ago. The rib cage is feeling better, but it’s still sore and his bruises have turned to a mud-yellow. It was time to check-in with the physical therapist and the nurse practitioner to review his progress and give us guidance.
Alzheimer’s is a very emotional condition and even though we have doctor appointments that does not mean George wants to get up in the morning. His bed is a safe place from the world of confusion. Everyday is a battle to get him up and going without arguments and upsets.
First, I have to make sure he has an up energy. I start with only positive talk and a strong voice tone. I often take a few deep breaths first so I can pump myself up to hand out the energy to him. A special high protein meal has to be served on a day that he’s going out the door. His medications are given to him early so his dementia pills and Zoloft can kick in and keep him calm. Not to mention his bladder pills that help him from nasty runs to the bathroom all day. Once these pills are given and the meal is taken he already begins to feel better. I also talk to him during that meal. I tell him what we are doing, what is happening in the world and our family. I remind him of a special day or event and talk to him as if we are going on adventure; even if it’s just to the doctor’s office.
Once up and out of bed, I have to be next to him to guide him on his daily groom. He no longer showers without me in the bathroom. His Parkinson’s could kick in at any time and take his balance away so I am there to start the shower and get the water at a comfortable degree. I help him into the tub and then he takes over. When the shower is over; I’m there with a hand to help him out and get dry and attend to his personal needs with a reminder for deodorant and moisturizer cream for his legs.
I have already laid out clothes for the day that fit the situation. George gets very cold these days so even in the summer I have to think of light weight but warmth. Then there is the shaving, the whole teeth clean and another reminder for his face moisturizer with SPF for going outside. As he is grooming; I’m cleaning his glasses and talking to him in an up tone with excitement to keep him interested in his day ahead.
All through this process; he pauses and wants to rest or go back to bed. It’s very important for me to keep focused on his progress and keep him on task in a way that is not pushy – but encouraging. I check how he looks and give his eye brows a trim and choose shoes that are good for walking. Then I get him settled in the living room with the TV news so I can do my own personal groom.
The amount of time it takes to get George ready for an outing is really quite staggering. It leaves very little time for me to get ready and often I skip my own breakfast because the time simply falls away. There is my bag to fill with sugar treats if George gets upset and water for his never-ending thirst because of his medications. Then there is his binder with all his medical notes and ID’s to put into my bag. I must have all of the information because we use the Veteran’s for our health care and they need the numbers and names at a moment’s notice. Then its time to pull out the car and get his walker loaded.
His walker is heavy and really hard for me to get into the back seat. George would want to help me with it if he saw me struggling to get it in the car. I always do it ahead of time so he can get in the car and just relax, not be distracted with anything around him. I have to remember to have the car cool or warm according to the weather or George gets upset and then I need to be prepared with my map if we are going to a medical office that’s unfamiliar. Luckily, we live very close to our Veteran’s health facility at American Lake. It’s just a short drive with no traffic.
I get George out the door and into the car without using his walker so it takes time to guide him and constantly talk to him to keep him motivated and interested in what we are doing. I give him input on what we will do “after” the appointment so he has something fun to think about, not fuss over the upcoming appointment and wait in the office before we see the doctor.
Once at the parking lot by the medical building I try to park as close to the door as possible so its easy for him to walk. The check-in can be quite complicated and I have to make sure he is seated and calm before I go up to the desk. Then I need to be ready with ID and if I have a letter of review for the doctor it is presented to the staff at this time, to be placed into his file. This way the doctor can pre-read the review of care questions or description of his latest challenges that I want him to address during the appointment.
It was our day for physical therapy appointment and our PT is a very nice man who addressed George with respect and walked him slowly to his office. Once there we reviewed George’s fall and his healing progress. The PT tested him for injuries and gave us a few suggestions for exercises.
This was our second appointment this week and I was busy asking questions of the PT about exercises and what areas I should address in the time coming up. As we finished the appointment, the PT told us that he really could do nothing else and it was up to us to do the exercises and address the physical declines that were coming up. My mind is always clicked into using the time I have with the medical professionals for questions and I was busy checking my notes and then we were walking out the door to the car.
I was getting George tucked into the front seat and trying to get the dumb walker back in the car. My mind running ahead at a stop at the store to get some pre-cooked chicken for dinner and asking George if he wanted an ice cream treat on the way home. I was thinking of getting home to the dogs and making a call to his sister about his appointment results. I was thinking of carefully getting the car backed out of the parking area when I was surrounded by disabled patients all backing out of their parking spots at the same time. I was thinking of the co-pay money and wondering if I had enough to get a few extra things at the store. I was thinking of George being left in the car alone when I ran into the store; did he look like he was calm enough to be left on his own? My mind was going a million miles an hour and I was checking my mirror and getting ready to back out of the parking spot.
George reached over and touched my arm. Reaching for my hand he looked at me and I noticed he had tears in his eyes. I stopped the car, pulled back in the parking space and put on the break and looked at him. He held my hand and squeezed and said. “He could do nothing else, that’s what the doctor said the other day. I think it’s just you and me now, Francy. They have given up on me.”
It hit me. I was so busy with my own mind, my own mental to do list, my own thoughts of the day..that I had forgotten the physical therapist’s wording. He did say he could really not do any thing more. George had heard that and taken it in and it had hit him. I had been so busy thinking and he was busy feeling. I had been worried about the full day and all that I had to do ahead of me and he was “in the moment”. I was busy being in charge of our outing and George was quietly absorbing his surroundings.
George had watched the other Veterans that were clearly in medical stress, and judged his own inability to walk well into the building. Feeling that he did not do well with his physical testing and knowing that there was no medication or treatment that was going to change his Alzheimer’s/Parkinson’s condition. He was coming to the conclusion that his medical team had given up.
We cried together. The loneliness of terminal illness is a very personal time. It hits you in different ways at different times. For George and I its a loss of little bits and pieces of his mind and who George has been in his life. It creeps in the door and sits there in silence until we can absorb it and process it. George was right; the medical staff had nothing else they could do for him. He was in a decline and there was no stopping it. He had a taken a hard fall and was stunned by the pain of his recent injury when he had been such a strong and athletic all his life. Realizing that his body and his mind simply could not be willed to work…was frightening for him.
His medical team is still there. They are polite and helpful but they have no way to make him well again. All we can do is walk this path together and it does become overwhelming at times. We can just hold on to each other and feel our way through the hurt. George pulled away and looked out his window. He was ready to go home. So I turned the car back on and began to pull out of the parking space…as I backed up George used a very quiet voice; “I’m glad, I’m not alone, Francy…I need you.”
Don’t let your seniors be alone when their medical team gives up. You may not be able to save the day…but you can save the moment. You can call your parent or family member and give them a giggle. You can stop over and give them a hug. You can put your busy day aside and give them a few minutes of your time. Your senior may know inside that their life’s journey is coming to an end; but they should not have to be on that journey without those that they love and have shared friendship with for years. Go and visit them, give them a reminder that love and friendship never end.
Blessings on you…francy