Memory loss and poor health seem to coincide. Hubby’s health has been deteriorating and dealing with doctors and nurses has become a full-time occupation. It was never my intention to write about issues other than memory loss and dementia, but as most patients with this condition are elderly, there is no avoiding the truth that the body fails with time. This makes the caring for our loved one with cognitive decline that much harder than one might already expect.
The fact that Hubby was unable to communicate or understand how poorly he was feeling, made it harder for me to process how serious his situation actually was. Until it appeared as though Hubby had a heart attack. His breathing was terribly labored and his legs became swollen. The fluid in his legs has also collected in his heart and lungs. Two doctors were called the house. No more emergency rooms for us.
Dr. S. offered hospitalization, but I declined. We will treat Hubby at home and the quality of his life will be as positive as possible. I know full well, as I have shared with you before (Especially in “To E.R. or Not To E.R?), that if he were to be put into a hospital at the age of 95, he would most certainly never return home and would die there. I have seen others go through this hell, and we will learn from their horrors. We have also learned a great deal of the negative effects of hospitalization for a patient with dementia. They can become psychotic, pull out all of the monitoring tubes, and refuse food and drink. A nightmare which I have no intention of ever repeating.
I have witnessed time and time again a pattern which concerns me greatly. A classic hospital scenario has the elderly patient receiving an intravenous diuretic to remove the fluid from the body. A catheter is inserted and the fluid is measured. Almost inevitably a urinary tract infection follows, antibiotics are given in the I.V., which rarely work. The infection can turn septic and the patient can die from the sepsis. One of my friends repeatedly says that her father, who was healthy when he broke his hip, died of hospitalization. (For more information, please read “The Dreaded U.T.I.” on thedementiadiary.com)
In our situation, I have opted for a home treatment with no catheter. Diuretic pills remove the water from the body. We know how much has been removed simply by weighing Hubby each day. Thus far, 15 pounds of fluid which has been removed. That has helped massively. Dr. S. came to visit last night and did an in-home ultrasound of Hubby’s heart and lungs, and found that there is still substantial fluid, so we will continue with the treatment.
Dr. S. determined on first examination that Hubby’s heart attack had resulted in the left side of his heart barely functioning. When more fluid is removed, we will do a second heart ultrasound to see if it has improved. When we family members panic, we forget to tell the doctors important stuff. I neglected to mention that Hubby has had two heart attacks in the distant past which caused substantial damage, and he has a stent inserted as well as a result.
Hubby is quite fed up with taking so many pills, and is beginning to refuse. We are grinding up some, hiding them in pudding or applesauce if necessary, and omitting the non-critical ones as per doctor’s advice.
When Hubby gets tough with me and tells me that he doesn’t want to take any more pills, I get tough with him and declare:
“I am hiring six different people to take care of you. My life is all about taking care of you. I don’t want to do any of this for you if you are unwilling to take care of yourself. All that we ask of you is that you eat your meals and take your pills. “
He knows that I am not a happy camper and I rationalize that my unpleasant threats are appropriate for his childish behavior. Down deep, I actually know that my protestations only make me feel momentarily better. Hubby cannot process what I am saying nor can he change his reactions.
Hubby’s favorite response when he does not want to do something is:
“It will make me throw up!”
I now laugh and say “Yes, That is your excuse for everything!”
He smiles a little smirk like a little boy caught with chocolate all over his hands who denied eating candy before dinner.
The head geriatrician from our heath care provider came to our home and offered “Hospice care”, after the “heart attack.” Absolutely not! The word “Hospice” sent chills down my back. The words “palliative and care” are appropriate for someone dying of cancer or another disease which causes them horrid pain. Hubby is not in pain and I am not willing to have people hovering around him waiting for him to die. He is not in crisis at this moment. His heart is apparently failing, but we do not yet know the extent of the damage.
At the risk of being blunt and socially incorrect… the fact is that we all will die sometime. Our bodies will not go on forever in spite of all the efforts we make to fight the inevitable. I am not afraid of dying, or of Hubby dying. I am afraid of how we might die and suffer. My mission is not to see that either of us lives forever, but that we have a good quality of life while we are on this earth.
The greatest surprise of all was when I then took Hubby to his cardiologist who knew his prior condition quite well. I had not been able to get an appointment with him when all of the drama was occurring. Dr. S. made his determinations based on what he was seeing on the Ultrasound which he administered in our home. However, Dr. G., who is an excellent cardiologist told us that Hubby had NOT had a heart attack after all! His heart is in the identical condition as it was before the episodes took place. The damage that Dr. S. viewed on the ultrasound was from the two previous heart attacks many years ago. What had actually occurred was “Congestive Heart Failure”. Once the fluids were removed from his lungs and around the heart, it was discovered that actually he had no further damage to his heart. Still, it is a condition which requires attention and monitoring. He is not at “death’s door” after all. I offer this example of three doctors looking at the same patient and coming to different conclusions – for your consideration. Each did their best, but two of the three doctors were missing the relevant history needed to come to a valid diagnosis. The lesson for us all, is that incomplete data can cause the wrong diagnosis. Do NOT automatically presume that one doctor has all the information required. Hence the need for a “second” opinion… or a “third…”
Keeping hubby at his best given the current challenges, is all that I can manage. I find euphemisms such as the word “challenges” quite irritating. Mea culpa! It is today’s trend to call every crisis a challenge. The thousands of illegal immigrants coming across the US borders at the moment…are a challenge. Riots in the streets are a challenge. Homelessness is a challenge. Dread diseases are a challenge.
Welcome to the world of challenges. Our microscopic corner of the globe has more than its share. In comparison to the political dramas which constantly present themselves here in the Middle East, Hubby’s health and day-to-day-issues are far less monumental and yet, we find them all-consuming none-the-less.
Two of Hubby’s three doctors and I, thought that he was at “death’s door”. My fault entirely (I have come to accept that everything must be my fault). Fortunately for us all, the sign on that dreaded door… actually said “Do Not Enter!”