So, today I write my first blog about my journey through dementia with my mom. I decided to start a blog in the hope that others struggling with disease will find a place to identify. If just one person reads something here to get them through another day, AWESOME! I’ve never done this type of writing before but I feel compelled to share my incites, struggles and accomplishments. I need a place to record this journey and have decided to use this blog to do so. I want others to know, YOU ARE NOT ALONE. Dementia looks differently on every single person. My mom has Alzheimer Dementia. However, all dementia manifests with loss of memory, a constant disconnect, confusion, frustration, depression, and so many more changes.
Before dementia, mom was always vibrant, alive, active, articulate, smart, witty, creative, artistic, just an all around great mom. We started seeing signs 10 years ago as the disease slowly progressed. About 5 years ago, it became apparent she was loosing the ability to remember basic daily activities. ie cooking, driving, finding her way from the grocery store and back to her house and remembering to take her medication. I guess you could say, all of us were waiting, hoping, she wouldn’t get any worse, but, she has. Many years later, we are all learning to cope with this disease. On this day in 2024, my mom doesn’t drive, can’t cook. has trouble remembering who we are at any given moment, obsesses over what I might think to be insignificant things.
I shall now begin communicating my journey though it may be fragmented and disorganized, (such is my life right now). I wish I could have started writing as soon as she came to my house because I can’t remember everything that has happened, but alas, it wasn’t meant to be! So much has happened that is worthy of writing but today I can’t remember any of it! If you are walking this journey, I know you can relate.
I have been driving to my moms house, which is an hour away, 3 or 4 times a week for over 3 years and often I would spend the night. Sometimes it would be necessary I went over more often. I have a family of my own. a husband, kids, a job, community involvement, and I am involved at my church. I would spend the night with her and my stepfather so I could be sure she ate, took showers, took her medicine, got to doctors appointment. You may ask, what about her husband? He too has been through the wringer with physical issues over the last several years and couldn’t help like he wanted to.
This blog journey begins with my mom coming to my house for 8 weeks in Feb of 2024 due to being diagnosed with Basal Cell Carcinoma on her nose. Her husband agreed she could come stay with me during the radiation treatment because he knew I was better able to care for her and the would get her where she needed to be. After a week he and I decided it would be in moms best interest to have her stay with me permanently. It has taken her over 3 months to be comfortable here with me and my husband. In the beginning she would wake up in the middle of the night, ( I slept with her for several months) disoriented and not knowing where she is. She needed help navigating our house to the bathroom. She has always had night terrors, as long as I can remember, so there are night I am woken up with a blood curdling scream !
My sister flew in yesterday and is staying a week. For the first time in months I can leave the house without needing to return right away. What a gift. She is taking over the cooking and caretaking so I can have a rest. I went by a home health care company today to have someone come in a few times a week to give me a break. I had hired 2 companies last year when she still lived in her own house and know it can help. She DID NOT like having people in her house. Here I hope it will be different as I will be working upstairs. It will give me time to take care of me, which I have put on the back burner for years.
One episode I do remember, as I write I am hoping it will trigger other things. One night. my husband went to a meeting, mom had been here a few weeks. We had a lovely day, worked on a jigsaw puzzle, watched a bit of tv, ate dinner and we just chatted. I received a call so I walked out of the room. I was on the call for about 20 minutes and being in my bedroom and it being after 8:00pm, I decided to change into my night clothes. I came out and mom “appeared fine.” I didn’t think anything about it. We chatted, went to the kitchen to get some ice cream and she says, “So where is the water? Me: “What water?” Mom: “You know, the water at the beach.” Me: “This house isn’t on the water.” Mom: “I am confused tonight, who are you?” Me: “I am Shelley, your daughter.” Mom: “No, you are not.” Me: “Let’s talk about it.” So we sat in the kitchen and just talked for about 40 minutes about where my house is, why she is here, when she came. I know logic has no place but I was trying to “ground” her a little bit. THEN she said , ” I don’t understand why they left us here. We don’t belong here. Aren’t you the nurse? I thought you are the nurse. The man left and then everyone else left.” She got a call, and just disappeared and now we are here alone. We don’t belong here?” The lightbulb went off in my head ! I told her, “I think I can help with the the confusion, would you like me to try?” Mom: “Yes” Me: “Come with me.” I then took her into the bedroom. I went in the bathroom and put my clothes on that I was wearing earlier before I received the phone call and came out. She exclaimed, “OH THANK GOODNESS! IT IS YOU!” I tell you, I was so relieved that I stayed calm and let her keep talking so I could “play detective” . Because I changed clothes after being gone so long, she didn’t recognize me. She cried she was so relieved I was “back.” I tell you, every little thing, I have to watch every little thing. She doesn’t see anything the way I see it. So from then on, for a few weeks we changed together so she could see me “transform” in front of her.
Wow, that’s all for today. I need to get downstairs and be present.