There comes a point, in every dementia patient, that constant care becomes an issue. They can function for years on their own (depending on the form and progression of their disease), but at some point it becomes necessary to bring in outside help.
My dad and I had a deep conversation (about a week ago) discussing life, our situation with my mom and the future. We talked about some tough issues, not all of which I will share. One topic happened to be about bringing in outside help. My mom seems to be doing okay functioning on her own throughout the day; but then again, nobody is really there all day to supervise her and see exactly what goes on. We know that she takes her medicine, naps and plays games on the computer. Occassionally she will do dishes or a load of laundry. What else does she do with her day?
There have been a couple of issues that have been concerning us as well. For instance, she had one of her medications switched; she does not feel like it is working to help her headaches, so she started taking some over-the-counter medicine as well. Not a big deal...except that one day we found her taking more medication before she was supposed to, because "it's not working". Obviously that could become an issue with overdosing.
We've noticed more and more that she is subsituting meals with Ensure. I suppose it's good that she's getting something in her system (I know this can be a struggle for many people, and Ensure is one solution for the problem). However, she complains of an upset stomach frequently, which I believe could be due to medications and a liquid diet. We have been trying to make sure that she is eating at least 2 solid meals (lunch and dinner) and leaving the Slim Fast or Ensure for breakfast.
A couple weeks ago we were over at their house for family dinner. I had plugged in the rice cooker and was filling up the rice cooker pot with water. My mom came along and put her hand inside the outer shell of the cooker (which was hot). She freaked out and ran to the sink, rinsing her hand under cold water; I'm not sure what would posess her to put her hand inside the cooker. Later that night, she was washing some food down the garbage disposal and something slipped down the drain into the disposal. She put her hand in the sink as if she was going to put it down the drain to retrieve whatever had fallen. I quickly yelled at her to turn off the garbage disposal, which she did. Luckily, everything was okay.
These may be small, isolated incidences, but it seems like mom is becoming more careless and clumsy. While she may not be putting herself in direct danger right now, we want to make sure that it does not escalate to that point before we realize there's a problem.
After discussing matters with my dad, we decided it would be a good idea to get some people over there during the day. There are few intentions with this:
1. Keep her company so she is not sitting in front of the computer all day long.
2. Observe her and make sure that she is safe and eating properly.
3. Help clean up around the house-it has been an overwhelming task for my dad to keep up on the housework, and mom is unable to perform her tasks that she once engaged in so faithfully. (If you missed my post about housecleaning, you can read about it by clicking here).
This is the hard part, getting people over there. I have spent the past couple weeks going over (a couple times per week) to visit and help clean. Mom does not comprehend the reasoning behind my coming over, so I just tell her I am there to help her clean and to visit with her. Each time I go, mom asks,
"Why do you feel like you always have to come over here to help me when you have your own house to take care of?"
By 1:00, she is practically kicking me out the door, because "it's time for my nap and your kids are too noisy." (On a side note...my one year old is generally asleep in the back room and I put a movie on for my 4 year old during this time, so it's really not too noisy). Nevertheless, I insist that it will be fine for her to take a nap, assure her that she does not have to entertain me, and that I will continue cleaning up until I need to leave to get my other kids from school. She is a little resistant, and I was a little unsure if I should stick around. After talking with dad, however, we concluded that she is going to have to get used to having people around and to continue to stay there for our allotted time to help, despite her resistance.
In my observations, I have noticed a couple of things that need to be addressed for anyone who is there caring for her during the day. One is mealtime. When she makes herself a meal (especially if it is left overs from the fridge), the food needs to be inspected to assure that it is okay. She has attempted to eat rotting food and is unable to tell when things have gone bad; my dad and I are trying our best to keep up on cleaning the contents of the fridge weekly.
Something else to watch her on is the mail. She likes to check the mail everyday and occassionally open things and misplaces them. I think she's finally beginning to understand that she is supposed to leave the mail on the couch for my dad, but if her name is on it, she will open it. She doesn't understand most of what she is reading. Yesterday she got junk mail from a jeweler. She had a look of puzzlement on her face as she questioningly repeated,
"So-n-so Jewelry?" (I forgot the name of the Jeweler) "Huh? I don't know what so-n-so Jewelry is...why are they sending me this??"
I told her it was junk, she could toss it. She replied with,
"No, I have to leave it here for your dad." Good girl ;)
For now, I have committed to going over 1-2 times a week. My job is organizing, decluttering and of course monitoring and visiting. I have an Aunt who volunteered to go over on Thursdays. I let her know our monitoring issues and asked that she can just help keep up on some surface cleaning (dusting, bathrooms, etc). My mom still likes to load her own dishwasher, so we leave that job for her ;) I have another Aunt and Uncle, who are on vacation for a few weeks, who have said they would try to come over once a week to do the same. That gives us help 3-4 times a week for now, which I think is sufficient at this point.
Taking care of someone with dementia can be daunting, at times. I know it will only continue to become more difficult. I just hope and pray that we will have the support of our family when the time comes that she will need true, 24 hour, round-the-clock care.