The last few weeks have been rough. I.mean.rough!
If you’re an Alzheimer’s caregiver, you know that things will go along pretty steady for awhile, and then suddenly, it’s as though your loved one falls off a cliff and is markedly worse and you find yourself having to navigate another new normal. That’s where we are right now.
Showering has always been an ordeal and a struggle. From start to finish it’s usually at least an hour-long if not afternoon-long undertaking that includes hitting, yelling, cussing and stand-offs. (To be clear–and honest–while my mom is the primary owner of all of those behaviors, I have been known to participate in all but the hitting.) Since it’s always been an ordeal, we are used to it. We don’t like it, but we deal with it.
Add to that worsening incontinence and more hitting, yelling, cussing and stand-offs when it comes to needing to change the pants. And, don’t forget the additional mounds of laundry and multiple-times-a-day bathroom cleanings that go along with that.
It’s been rough.
That’s why I’d been looking so forward to my mom’s semi-annual trip to the neurologist. She’s much worse than she was on her last visit. She’s lost a great deal of language and is much more weak physically in addition to the aforementioned issues.
I had two goals: The first was a “happy pill” to make her more compliant. I don’t want to turn her into a zombie. She sleeps (or at least lays in her bed) around 20 hours a day as it is. But, I do need her to be less argumentative about these matters of hygiene. Not only for her sake, but for that of the entire family.
The second was an increased dose of her incontinence medicine for obvious reasons.
I knew the doctor was likely to be resistant to both of those requests as both carry side effects that range from constipation to making the dementia worse/progress faster or even death depending on the drug. While decisions like this aren’t easy, it all comes down to quality of life vs. quantity at some point.
Appointment day finally arrived! I was going to make my case and get the help I needed to improve the quality of her life as well as that of the family!
It was going to be a heck of a day. My mom would have to shower, brush her teeth AND get dressed before we left for the appointment. I was gearing up for a big battle.
She didn’t really fight me. She got a little belligerent when I washed her hair, but that was it. As I helped her dress, she pulled her turtleneck sweater over her head and as her face peeked through she looked at me, we smiled at each other and said, “Peek a boo!” at the same time. We both laughed hard at that. As we drove the 45 miles or so to the U of M Turner Geriatric Clinic for her appointment, she was quite observant, reading signs and commenting on the scenery.
I thought to myself, “She’s having a good day.”
When we entered the doctor’s office, I began to paint a picture of just what life is like dealing with the incontinence and the combativeness. I told the doctor that I would describe my mom as nearly completely incontinent of bladder. It was just about that time that my mom spoke up and said, “I need to go to the bathroom.” Humph.
Upon returning from the bathroom, the doctor began to give her the mini-mental.
Question 1: What’s your birthday? She always knows that and she got it.
Question 2: What year is it? She had no idea–she never does. The doctor said, “It’s two-thousand something. Can you guess what it might be?” My mom replied, “2014.”
Before the next question, my mom asked the doctor, “Is your name Dr. Heidebrink?” At which point I burst out laughing! How in the heck did she know that? She hasn’t seen her for 9 months! It’s not as though her name is “Dr. Smith” afterall!
Question 3: What month is it? May. It’s ALWAYS May because her birthday is in May. Doesn’t matter who asks or when, it’s May. Not yesterday. Yesterday it was March!!
Question 4: What season is it? Let’s see…she was wearing winter clothes, a winter coat and there was snow on the ground when she went outside. Yup! SPRING! Not even 24 hours into spring but it was spring! In the four years she’s been getting the mini-mental I don’t think she’s ever gotten that one right before.
Sometimes, it’s easy to forget that from the doctor’s perspective, it’s actually my mom that’s the patient and not me or the rest of the members of our household. Getting the meds I was asking for was not looking good at this point.
Then I just really put it out there about how her behavior is impacting the family and the care-giving situation and that all of this stress can’t be good for her either. The end result was a low-dose anti-anxiety pill and an increased dosage of incontinence meds. I’m very hopeful that the anti-anxiety med will do the trick. Honestly, the only time she is combative is when it comes to hygiene and everything about hygiene takes place in the bathroom–a room it is obvious makes her very nervous. I can’t know which came first–the anxiety over the bathroom which makes her resist the hygiene tasks, or the resistance of the hygiene tasks which causes the fear of the bathroom. Either way, this drug could be the answer.
As we left the doctor, I asked my mom what her favorite car is and she said a Cadillac. I told her I was going to start calling her “Cadillac” because she acted just like a car at the mechanic!
Although the timing of her having a good day wasn’t great in terms of the doctor getting a true picture of how she is doing, I sure wish there were more days like yesterday!