Ready, Set, GO
Gradually mom became less and less interest in playing games. Now when she attempted to play Monopoly, she could not remember what cards she had in her hand. Or she would yell at her brother that he did not give her enough money, even though it was right in front of her on the table. Henry would become frustrated to at her lack of focus. So, within a span of six months, the board game stopped. It was sad to see because it used to make my mom so happy to be able to tell Henry that he would never be able to beat her.
Here it is, Christmas, 2014. What used to be the most joyous time of the year for us was now problematic. In days gone by, we would all assemble a personal grab bag, which was essentially all those gifts we may have gotten in the past from friends or relatives that did not work for us and “regift”. It was so much fun to see if the recipient would remember that it may have been them who had given the gift to one or the other. As the babies in the family became of age, they would assemble their grab bag and be so proud that they were finally able to participate in this family ritual.
In the here and now, however, Christmas was a tense situation. My mom, who used to do all the cooking of the main dishes, such as the turkey, the dressing, the sweet potato pies, the German chocolate cake, were no longer possible. In looking back to when my mom was about the same age as I am now, in her mid-sixties, she announced rather suddenly, that she would no longer be cooking for us. Not even for herself. She gave no real reason for it, other than she was just tired. She had also began forgetting small things, such as forgetting where she put her purse, her keys, her shoes, etc. We thought nothing of it at the time. It was assumed that it was just the aging process.
Since me and my daughter, Trisha, had been living with my mom, we had not had a moment of respite care. POA sister (Jessie) did not see the value of us taking time away from my mother’s house. In her mind, we should be grateful that we had a place to live and we did. It was a blessing that we had a roof over our heads, but we paid the price for that in the way my mom treated us. We could not even use the stove without my mother getting right up behind us. I could hear her breathing down my neck. She would curse and scream in our ears something like, “What are you doing? I know you are trying to steal my food. I can’t afford to feed you. You need to get out of my house and find a job so that you can feed yourself”, said my mom.
The further I tried to move away from her, the closer she would move up close to my back. I had to move slowly away from her, so that I would not push her to the floor.
“Listen mom,” I said. “This is not your food. Me and Trisha have food stamps. We buy our own food with our own money. We do not need to eat your food.”
Mom would then look at me or Trisha with a glazed look in her eyes and began cursing and screaming that we were both liars and we needed to leave right away.
After all the commentary and commotion, I would find myself unable to eat. My appetite would just disappear, and I would then go upstairs and try to take deep breaths so that my blood pressure would not go up. Sometimes it worked, sometimes it did not.
Before coming to mom’s home, my blood pressure was not an issue. Sure, I was taking medication, but it was under control. Now, each time I went for a checkup, my doctor would tell me my blood pressure was up and I needed to do something to make it better. When I told my doctor that I was caregiver for my mom, she told me to try breathing exercises and that respite care was the answer to alleviating some of the stress of daily caregiving.
I had been waiting to receive my first social security check. The first check paid to me was for the month before (November 2014) when it should have started, so I had a little extra money for Christmas. Me and Trisha decided that this was our chance to go visit friends in Modesto. As hard as it was for us to be away from family at Christmas, we needed a break from caregiving and from mom’s threats and harsh treatment, so we packed our bags and visited friends in Modesto. While it was fun to visit our friends and talk about old times, I could not feel good about it because I had never been away from family for Christmas. I missed catching up with family members who we usually see only at Christmas time. I missed doing the grab bags. Still I did manage to get a little rest and some peace of mind, knowing I would not get yelled at or cursed at for trying to eat or for trying to fix food for my mom.
We came home two days after Christmas. I felt somewhat renewed. The minute we walked through the door, mom began screaming at we did not live with here and that we should leave. Trisha tried to reassure her that we did, indeed live here.
“Don’t come in here lying to me,” said my mom.
Trisha tried to step forward to give my mom a hug, but my mom gave her a look that said, “Don’t even try it.”
As we went upstairs to put away our bags and to relax a bit before dinner, mom was at the bottom of the stairs claiming she was going to call the police if we did not leave her house. She then threatened us that she might have to go get her pistol and shoot us in the butt.
I connected with my oldest sister, Carol to see what happened while we were away. She told us that mom was alright at first with them being at the house, but she became anxious when it was time to eat. She refused to let anybody fix her a plate and began complaining that she did not know most of the people in her house (her grand kids and some of her children). She complained that they were taking her food, and that she wanted them to leave. They managed to ignore her and tried to push through with Christmas traditions.
The only thing mom seemed to recognize was the grab bag tradition. They said she was smiling and laughing with them as the items from the grab bag were taken out. I would so loved to have seen my mother smile. Those times were few and far between for her. Since having dementia, she seemed fearful and anxious. She always felt that someone would break in and take all her stuff. I sensed a great deal of loneliness in her. When I thought about it, I realized that when you can’t remember who anyone is, it must feel like you are lost and so alone in the world. That is what I try to remember when we are in a confrontation with my mom.
It was so frustrating to not know what might happen next with my mom. I wondered If POA sister would step up and make sure that mom’s paperwork was in order. Did she have a living will? Did she have a DNR in place? Did we have a home care case manager for her? Thank God we had Louise, her caregiver, but she was only there about five hours a day, which made it harder for me to even go to the grocery store because we never knew if mom was going to be calm or confrontational.
Janis King, author of “Are You Prepared,” states:
“So much will change and working with the changes can be a trying and difficult experience… Trust me when I tell you that the best medicine for frustration is preparation.”
There were so many unanswered questions, I felt compelled to call POA sister to see where we were in the process of properly preparing us for the road ahead. True to form, POA sister was a bit peeved that me and Trisha had opted out of Christmas at home this year, so she did not get back to me when asked if we were all set to help mom with this diagnosis of dementia. All she would say was, “This is my job. I don’t need help with this. I know what I am doing”.
An excellent article to read concerning this problem is an article titled, “Getting Your Affairs in Order” from the www.agingcare website. This site is for anyone having trouble caring for their loved ones with dementia or Alzheimer’s. Getting a different point of view is always helpful when you are too close to the situation.
Just click on the link below for information on to do what it takes to get the affairs of the person facing dementia in order.