Experience #3

My Mom can’t swallow very well (rarely) so she has a suction machine at her bedside.  She has a peg-tube and she has very limited movement in her right hand/arm. She does not have the strength to press a call bell.  She is cognitive, understands what is being said and through groans and facial expressions I can understand what is going on.  On rare occasions she can get words out…other times she tries but it’s hard to understand.


My sibling and I were taking shifts spending up to 10hrs per day at her bedside.  Doing suctioning as needed, oral, nose, ear care as needed.  We were also taught speech therapy techniques using a spoon which we were working with our mom as she wanted to eat food again and get rid of the peg tube.  We would also do physio exercises. My sister and I were heavily involved in all aspects of her care and would point things out to the staff that they didn’t notice themselves.  We would also keep our mom company and take her to events or wheel her around the building to get her out of her room.


On March 15th when we were told that they were going into lockdown we immediately asked to be made an exception due to the situation but we were told ‘No, No exceptions’. The next day I went in and asked if they would walk a camera down into our mom’s room so that we could stay involved in her day to day care and talk to her at will 24hrs a day.  Our mom is in a private room. They said No.


Our mom has been quarantined twice. No COVID in the home but when they suction her (which we were doing daily) they would swab her and quarantine her. The first time she was quarantined, I didn’t know if she had her tv turned on or if she was left in bed or if her feed was on schedule. The second time, they suctioned her and did another COVID swab and called the on-call doctor. My mom was quarantined but this time I had skype calls so I could see her each day and I could see that she wasn’t doing well.

My mom is now deteriorating from depression. She doesn’t connect through the window or the tablet, and she has thrown up 3 times in the last 3 days (she is fed through a peg tube). She is refusing mouth care. The doctor told us tonight at the window visit that he thinks she has given up her will to live and we should consider stopping her feed to see if she makes a fuss to indicate she’s hungry…my mom is non-verbal. I told him that she wants to live and he asked me how I knew, maybe she has changed her mind.  He said maybe I should try to ask her and I said how can I do that through a window or on a skype call, could he make arrangements for me to go inside and spend some time with her to see if she’ll communicate with me.  He said no, there were strict restrictions on visitors. 


What my mom needs is a HUG and her Hand Held and her Dog and her Family involved.  I am confident that she would perk back up if she had us back in her life.