As I walked though the grocery acquiring vegetables to accompany my evening meal, the phone rang. It was one of the Hospice Nurses. The heart always skips a beat when I see those names pop up on the screen. Before caller I.D., I would have just answered the phone and dealt with the situation with no drama. Now, I have no choice but to get the dramatic preview.
I answered and heard the Nurse tell me that the new Care Manager was concerned that Gary is no longer swallowing his food properly and that as of that day, they had put his diet to "pureed" food. Bam, there it was. The next step in his decline. I had known it was coming.
I said a low-level "thank you" and the nurse asked what was wrong. I went off on her....bless her heart. In the produce section of the store, I started a tirade that included:
"Why do you people have me go and buy pillows and bring them to there and then you don't put an order in the computer for them to be used? What do you mean you are now ordering him heel cups instead of pillows? Couldn't you have told me that before I went and bought new pillows? Don't you realize I am running out of resources? Don't you realize I am done? "
"What do you mean you are done?" said the nurse.
"I mean, the man in that wheelchair is not my husband and I'm tired of living like this and I know he is. I'm just done!" The woman standing next to me buying cucumbers was horrified.
"Would you like to me have someone call you so you can talk this through?'
"(*&^4%& - expletive.... no,No, I"ll be fine. I just don't know how much longer I can do this. I'll be fine when its over."
"Well, he is declining quickly and now rarely sits up and is bent over his chair. The lack of swallowing is the next step."
Yes, I know. If felt really bad that I had attacked this poor woman. The last few days are the first that my personality has shown the severe wear and tear of the last few years. I went home, had a glass of wine, talked to a friend and slept like a baby.
It's all so hard...
ReplyDeleteMy husband was diagnosised a year ago today and I believe from that moment until now I have grieved. It is sad to look at the man I love so much and feel he is already gone. I read your blog and cry through almost everyone. Please know that I am forever grateful that you share this because it makes me feel I am not alone.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteMy heart melted with yours reading this. I've seen my son like t his, a feeding tube was inserted, he is still with us 5 years later. Is it fair to him? did we do the right thing? Something told to me by my pastor who prayed with me often. He will not go home until his work on earth is done, our God is in control and has a plan and a purpose on earth is done. Big hug, not many can relate, and those of us who can, we are numb at times too, the pain so deep, God bless you Ada, God bless your sweet husband, praying for peace in this process......
ReplyDeleteIn my own case it was just over four years ago when my Mum began to sound different on the phone. She lived back East with my siblings and my husband and I were living on the West coast and in phone calls it became apparent that my Mum's voice no longer had the same tones of excitement and humor that she used to; and instead it was very flat. At the same time she began to tell us about a situation at work that just didn't seem possible; she was complaining that a group of fellow workers were conspiring to get her. Although Mum had much academic success as a teenager, her behavior had become increasingly odd during the past years. She quit seeing her friends and no longer seemed to care about her appearance or social pursuits. She began wearing the same clothes each day and seldom bathed. She lived with several family members but rarely spoke to any of us. Obviously this whole story seemed very unbelievable and we sensed something was wrong but had no clue as to what it could be. We recommended that my Mum quit her job and look for something else - as we began to wonder if she had a "mental breakdown" and would get better once out of the stressful job situation.
ReplyDeleteIn the case of Mum, she was having persecurtory delusions, auditory hallucinations and negative symptoms that had lasted for at least Three years. All of these symptoms fit with a diagnosis of Dementia. Her story reflects a common case, in which a high-functioning young adult goes through a major decline in day-to-day skills. Although family and friends may feel this is a loss of the person they knew, the illness can be treated and a good outcome is possible as it all got better when we started using a herbal medicine for her through Aparajita.
My recommendation to people who are either wondering if they have DEmentia or wondering if a friend or loved one has Dementia should contact aparajitatan@gmail.com. I think one of our key problems was that we didn't do this in the early days of my Mum's illness as we never thought of a natural alternative for her.