Chapter 7 – Finding our way in the unknown

This disease is so difficult; one day is great, the next is more challenging. All the reading and research cannot prepare you for the complications you encounter. The constant unknown is so difficult, so I try to see things through the eyes of an adult but that inner child keeps sneaking in. I am thankful for so many things and that helps me get through the challenging times. Mom is a very happy person and never complains, she always sees the goodness and the wonder of everything. She does not discuss the fact that she does not remember anymore. We are at the stage where she just does not remember. The journaling has given her strength I think, and if she is unsure she reviews her notes to help her remember.

Over the last months we have developed a schedule that seems to be working with Home Care, Glenda and myself. I am very grateful for the help. I am so thankful for Glenda as she is also “on call” and is such a great friend supporting this situation. I was overwhelmed when I brought her into this and she has taken such pressure off of me both mentally and emotionally. I am so thankful to have Mom’s friends that stop in to visit but it does not happen as much as it once did. Sadly, some have passed, some have moved to be closer to family and some have just stopped coming. The strange thing to me is that Mom would go out of her way daily to help anyone and attend senior’s meals and outing and Euchre tournaments. She always had a car full of people that she would take to these events. She was very active at Church, a member of the Choir for over 50 years.  Now when her life is changing many of the people that were on the receiving end of her kindness seem to have disappeared.

Of course she is not kind for reward but because that is who she is. When my Mom volunteered at the Retirement Home she would say many seniors’ will not volunteer with the aged because it makes them see what they may become. Mom always said I go and visit because it gives great joy to me and the residents.  Maybe the changes that she is living through have affected some people from her life in this way. Fear is a very powerful emotion.

As I have mentioned before I try to get her to interact and attend events but she does not want to go.  I am concerned that she is lonely, but when I ask her she is always fine! I should really know better than to ask her as she now says what she thinks I want to hear. It is so difficult to know this and yet I so want her to be in charge of herself if that makes sense. She is in a place now where she does not make decisions without discussion and she has really lost a lot of faith in herself.  I work at encouraging her to continue to think for herself, but she is finding it harder to do that. This seems to fall into Late confusional/mild Alzheimer’s Stage 4 on the Reisberg Scale. This has been one of many interesting resources that I have used to gain more knowledge to be able to help her through this. As with any other literature I use it for guidance but sometimes it does not relate to what we are dealing with here and now. I want her to have the best quality of life she can and I have to watch myself to encourage her to interact instead of simply taking over. My friends and family constantly encourage me.  It would be so devastating to travel this journey alone and I am thankful for the caring of those who love us.