It is difficult for me to write about my mother as she is today. Yet she is a very large part of my life, and should definitely be included in “All the Little Bits”. My problem is that part of me worries about how she would feel about me writing publicly about her condition. However, I know there are many, many other people out there going through the same type of experiences as we are. It may be helpful to them and others who are on the threshold of making decisions about the care of a parent to know what it is like for us.
You see, my mother has dementia. Big Eagle and I have been with her throughout many years of her affliction. I first realized there was something amiss when we were on our way driving from Texas to her house in Florida in the summer of 2005, and we had a call from my brother. He was asking if we were planning on coming to see Mom. She had told him she thought we might be, but she couldn’t remember for sure. I told him not only were we planning on coming, but we were halfway there! This was very unusual. I was always careful when talking to Mom to make sure I never even suggested that we might visit her unless it was a certainty. If I were to say we might come, in her mind it was going to happen. Plus she would be disappointed if it didn’t. There was NO forgetting that we would be coming, so this was totally out of character. Then while we were there, one day we left to visit old friends we had from when we lived there. When we got back Mom wanted us to take her to the grocery store to pick up some things to make dinner. While we were shopping, she mentioned that she had made a pie that afternoon while we were gone so we would have dessert after dinner. I asked her what kind of pie she made. She couldn’t remember, and not only that…she didn’t seem fazed at all that she didn’t know.
We are blessed to live in a house that has an addition on it that is a complete living unit of its own. It has its own kitchen, bathroom, screened-in porch, living room, and two bedrooms. Many people refer to it as a mother-in-law unit. When we bought the house in 2001, we didn’t need the apartment (as I’ll refer to it). We loved the house and the site though, so we decided on it anyway. Mom had been to visit a few times. I had always told her that if she ever wanted to move in, she would be more than welcome to live in the apartment. Well, not long after that summer visit to Florida, I got a call from my sister saying she thought Mom was ready to move in. We had a family meeting at Mom’s Florida home with my siblings that were there at the time to discuss her moving to Texas. Mom had always said she did not want to go to a nursing home. I can’t tell you how many times during the meeting she said she did not want to be a burden to anyone, yet she couldn’t live alone any more.
So Mom came to live with us in the fall of 2005. The first morning after she arrived, she and I were in her kitchen about to prepare a breakfast for the two of us. I showed her where the mugs, silverware, and coffee were (she drank instant) and told her to go ahead and fix her coffee. She got a mug from the cupboard, then looked at me and said, “Now what?” It hit me then that she was much worse off than I had realized. She hasn’t made herself anything to eat or drink since she’s lived here. She just doesn’t have the wherewithal. The most she would do is get Hershey’s kisses from the candy jar to snack on.
The progression has been slow over the years. When she came, she was walking with a stick cane. From there we moved on to a 4-pronged cane, then a walker. After some years, she was still able to get around her apartment with the walker, but required a wheelchair if the walking entailed more than that. Even after she broke her hip, she was able to get around her apartment with her walker. But then about 3 ½ years ago, she fell and broke her knee and has not been able to stand or walk since then. At that point we brought a hospital bed into the main room of her apartment, and today she is confined to that bed.
Pictures of her 10 children are on the wall, but she no longer knows who they are. She sometimes asks who those people in those pictures are. A little over a year ago, there began to be times when she didn’t know who I was. Thankfully, most of the time she does know me. She goes through periods where she is alert for an extended time, but gets so worn out from it that she sleeps and refuses food or drink for any where from 24 to 48 hours or more. Every now and then those periods of alertness spiral pretty much out of control to where she is talking constantly to everyone and no one for hours. This hasn’t happened now for a few months.
Currently caring for Mom requires that we use a draw sheet that we keep under her to change her position every two hours to prevent bed sores. Her right heel will often get red from the pressure of being in bed, so we use a special pad on it. I’ve noticed a sore on the top of one of her toes, so I need to look into getting a blanket support lift to elevate the covers above her feet. She is completely incontinent, so we also need to make sure to change her brief regularly. We also must constantly encourage her to drink water so she stays hydrated. Over the past couple of months her eating habits have changed to where it’s not uncommon for her to only eat one meal a day (usually breakfast). She often refuses when we offer her the other meals. We do our best to supplement with Ensure. It has also become more difficult for her to chew food, so I prepare soft foods like soups, meatloaf, mashed vegetables and fruits.
Fortunately, Mom is financially secure enough that I have been able to hire help. I would go absolutely stir crazy if I had to do this around the clock! I know there are people who do, and I just don’t know how they do it. I have someone with her for 8 hours each weekday, and I do the other 16 hours. Since Big Eagle works all week during the day while I have free time, we also have someone with her from early Saturday morning until late Sunday afternoon. That way he and I can spend most of the weekend together and have a date night on Saturdays. Although I have 8 siblings, none of them live in Texas. That means most of the time I can’t rely on other family members. But my sister Susan is a major blessing, because she will come stay with Mom in my place if Big Eagle and I want to go on a vacation. While we don’t travel often, we do get away once or twice a year thanks to her help.
Over the course of the years that Mom has been with us, things have changed for me, too. I was working the first 5 years that she lived here. In 2010 I retired from teaching, and my daughter and son-in-law blessed us with our first grandchild at that same time. Have there been opportunities I have missed because of caring for Mom? Yes. If I could go back in a time machine, would I do it again? Yes. But if I’m being perfectly honest, when she became bedbound, looking back now, I think at that point we should have moved her to a nursing home. It hurts me to say that and to think that way, but it’s true. I wouldn’t move her now unless for some reason I was no longer able to give her the care she needs. Mom celebrated her 90th birthday the December after she moved here, and I never in a million years thought we would still be caring for her over 13 years later. But here we are!
If you have read this far, bless you! There are many things I’ve been through with Mom that I didn’t even mention here. If you have a somewhat similar situation, I would love for you to share about it. I thank God every day that my Mom seems to be comfortable and pain free. I don’t understand this condition. Never have, probably never will. The mind is so complex. I pray regularly for the peace that passes understanding.
Philippians 4:7 And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.