Chapter 5 – Changing Roles

There are many challenges with being an adult. There are times lately where I want to be a kid again and not have to carry all this responsibility. Unfortunately, that is not an option. I ‘ve had to take on the role of decision maker for my Mom with all the challenges that presents. Our roles have changed drastically as she travels this road of dementia. I hold onto my faith as I struggle with this fear that at times becomes overwhelming. I have tried to educate myself to become prepared for this journey but it is not easy. I am guided by the love that we share. She is my Mother and although it is sometimes difficult, my respect and love for her gives me immeasurable strength.

Mom has home care assistance that comes in weekly for 3 hours to do her cleaning, laundry and personal care. I am so thankful for that assistance. After 6 months of preparing her meals daily handling the balancing act of working full time and my family home life and Mom things have become overwhelming for me. I have decided to hire someone to assist with meal preparation and also as a companion for Mom. I realize we need someone to drop in to have a visit and an extra pair of eyes to help ensure things are going well. Glenda is doing some cooking and also shares a cup of tea and a chat with Mom. We communicate through email and I have supplies ready for her with the meal plan in place. This keeps all the meals fresh as I take care of half the week and then Glenda does the rest of the week. Sunday Mom has dinner at our home so the week is covered. Glenda is great with helping out with whatever is needed. With my busy life it is such a relief to know that I have no worries on 2 days a week as a PSW (personal service worker) and Glenda are spending sometime with my Mom.

Of course her safety is extremely important and the Medic Alert Lifeline is a wonderful comfort. The controller has become the necklace of choice for Mom and she wears it all the time, even to bed which is great. After the lifeline was set up, the main communication box was attached to the phone in the spare bedroom. They test the system monthly to be sure everything is working properly. My Mom called me in a bit of a panic and said the box in the bedroom was talking to her! I asked her what the box was saying she said “are you there, and can you hear me”? This was the testing they had been referring too. I knew it was coming and I had discussed this with them but they had informed me they would contact me and let me know the date of testing. She said she told the box “I am here and I am fine”! I still chuckle as I type this. Of course at the time it was not amusing to her. Needless to say this did not happen again without my receiving prior notification. As long as she is able to record the event in her calendar/journal then she knows it is coming and she feels comfortable. She needs to know in advance so she can prepare and read the journal and remind herself.

I am concerned that she does not have a lot to do but she seems content. She still does her knitting and loves to play the piano. The music gives her such joy I am thankful that she still enjoys playing. She does word puzzles and of course has friends in the apartment building and they have coffee at least once, sometimes twice a day. I have encouraged her to go out to functions. One Care have a mobility van and they will come and pick her up and take her to events or shopping or appointments, but she does not want to go. She is so concerned that she will do something wrong, that she is so nervous about being on her own. I encourage her constantly that she can do anything and that there are people that will assist and take care of her but she is becoming very dependent on me. I have worked at keeping more people in her life so she knows that others can be there for her and her friends and extended family spend time with her. She will go out for a drive or visit, but she is always cautious, almost nervous now. I encourage her to keep her independence as I think it is important for her, however I see it starting to disappear.  As much as I am aware this is all part of this disease it still plays heavy on my heart and mind.