Experience #1

How has your daily routine changed during the pandemic?

My Mom has said that she now stares at walls for many hours of the day and does nothing. She says she is sat in front of the TV. She has said there are less social interactions because the activities are limited, the numbers of participants are limited, and they have to be apart which makes it difficult to hear and see. She says she does not talk to anyone except staff when they talk to her. She says there are not enough staff to keep her doing things, especially on weekends. She also said she does not get to go outside very much at all.

How have the visitation restrictions affected you?

My Mom says that it has been absolutely terrible and this decision is cruel. She said, “you were in every day and helped me out with whatever I needed. You would take me outside when the weather was nice, we would have Tea every night and talk about everything”. She says she does not know how long she can last.

I was also there at supper every night so she did not choke and I told her I loved her and kissed her goodnight when she went to bed.

Now she is alone and nobody knows her story. There is nobody that can bring up where she lived, who she was married to, how many children and grandchildren she has, where she worked, and who her friends were. She says that she does not remember all her children or parts of her life, as I, as her support person used to reminisce with her to keep her life relevant.  

My Mom has lost her memory  at a quicker pace than she would have if any family member would have been allowed to be designated an essential family caregiver and allowed in, if only for an hour a day. She has also lost the sparkle in her eyes.

What do you want the people making decisions about long-term care homes to know?

My Mom has told me that she wants everyone to know that she NEEDS her support system and to not cut it off.  She says she was given no choice in any decisions surrounding the lock out. She has also mentioned that “My family means everything to me and to not see them is killing me.” She thinks that keeping family out for so long is cruel and that there must be a better way to be safe from the virus but allow family in. She said this is supposed to be my home but I would never lock anyone out.

I find she is more depressed, lonely and giving up because it has been so long. I see the physical and cognitive deterioration every day.

My mom was able to carry on a decent conversation at the initial lock out, and now it really depends on the day as to the conversation.

What do you think was done right?

Both my Mom and I think the initial lock up was ok but it has gone on far too long and loneliness has set in. I believe lock outs should be no longer than a month. 

I saw my Mom start to give up on being able to see her family. I feel, even if she was able to see her support person that she would be better cognitively and physically.

What do you wish had been done differently?

I wish she was allowed 1 essential family care giver that was allowed in to support her through her end of life journey. Without this support  I can see that she is worse off. She says that she does not remember all her children or parts of her life, as I, as her support person used to reminisce with her to keep her life relevant.