The Sound of My Voice
Apr 22 2012 in Kristin's Blog by Kristin
I do not have a mellifluous voice. Anyone who has heard me speaking with Denise knows that. The kindest thing that anyone has ever said about it was that it is, uh, “different.” So I often think about how it must grate on Mary’s ears throughout the day as I must, of necessity, direct her in her ADLs.
The only thing she can do by herself at this point is make a cup of tea – and she usually forgets the tea bag and forgets to drink it anyway. I have to physically get her out of bed and direct every step she makes from the toileting process through dressing and breakfast, until I get her parked on the couch for the day. Mary’s obnoxiousness has changed from aggression to passive-aggression, so I have to be careful just how I phrase directions and how I modulate my voice or she will just refuse to cooperate. This will result in her sitting on the toilet for 1 1/2 hours or refusing to get into position when she falls on the floor so that I can lift her up.
Thus I have to keep my voice light but not nursing-home perky and never say “let’s” do such-and-such. I always keep in mind her mood and how she will interpret anything I say. If she is in a bad mood, I can tell she thinks I’m being condescending. As hard I work at getting just the right tone, I know that it has to be very hard for her to have me constantly giving her directions. Although she has forgotten how to do most ADLs, the minute I say, for instance as she is putting her soiled undies into the garbage, “Okay, Mary, I’ll take those for the laundry,” she recovers, puts the undies in my hand and says, “Stop telling me how to do what I know how to do.”
Trying to maintain a shred of dignity when she cannot go to the toilet alone is difficult. And telling an 86-year-old who was accomplished in many areas during her active life that it is okay to pull up her pants now is also difficult. The now-toddler Mary needs direction that the octogenarian Mary cannot tolerate hearing.
Getting just the right balance in my voice and my words in order to help her feel she is really making the decisions and doing the work is a challenge I struggle to meet.
Kathy said on April 22, 2012
Hi Kristin,
I’m right there with you!
Since Hubby has NO concept of time, I’ve waited and waited and waited for him to start or finish something.
The sun can even be shining and he will ask me if it’s day or night.
I know how frustrating it can be especially when there are places that we need to go to or leave. Once we sat in the restaurant for nearly 2 hrs while Hubby ate.
I sit patiently and wait, making sure I don’t get too many refills of tea.
Doing this for Hubby is one thing, he’s Hubby. But you sweet Kristin.
You have gone beyond the mortal lines of friendship.
What you do for Mary, someone you hardly knew.
Your compassion towards her and the lessons in love that you are obviously learning and sharing speak volumes of the softness of your heart. And the sounds of your heart carry just the right tones.
Praying for you & Mary daily.
kristin said on April 22, 2012
Thank you for your kind words, Kathy. I know we go through a lot of the same things with Lewy (Mary also has Alz, and the combination makes for some interesting times).
I must clear up one misconception: I have known Mary a long time – 33 years. And if I hadn’t owed such a deep moral debt to one of her daughters, I would probably not have offered to take care of her. I had heard stories of her abuse of her children and saw for 26 years how she abused her husband. So I am not selfless. However, this has been a real learning experience, to say the least, and I am not the least bit sorry at this point to be doing it.
I always learn from your posts, especially regarding the creative, gentle and thoughtful ways you calm your Hubby. The two of you are also in my prayers daily.
Trish said on April 22, 2012
Kristin, I had to laugh at “not nursing home perky” — I so understand what you mean by that! I, too, am in awe of you, Kristin. I have trouble doing some of these tasks for Robert and he’s my brother – what you are doing is really above and beyond. I suspect your debt has long been repaid yet you soldier on and teach me so much in the process. I hadn’t thought about how I sound to Robert when I’m instructing him (although I have had to stop myself from being too much of a drill sargeant).
You’re in my thoughts and I’m hoping you have a peaceful week.
kristin said on April 23, 2012
Thanks, Trish. Yes, I consider my debt paid, but this caregiving thing is a good teacher, and I have a lot yet to learn. At this point, I could opt out, but choose to stay and continue the journey. The lessons folks share on this site are profound and between them and my own experiences, I feel richly rewarded.
Old Billy said on April 23, 2012
Thanks for all the of your sharing Kristin unfortunately for you, your situation is a reminder to us alll of just how bad things could be. But there’s always a reminder of why were here and why we do what we do in your posts.
Helping to maintain our Carees dignity That’s a major part of our role as Caregivers and the way we control the inflection of our voices in any given situation plays a major part of that.
“Nursing Home Perky” What’s up with that? You’d think after enough bed pans had been flung at them they’d learn not to be so condscending all the time.
kristin said on April 23, 2012
Billy, I think I understand how nursing home and hospital personnel get into the perky thing. Essentially, they’re ordering people about all the time, and I think perky is a way to try not to be a drill sergeant. It also may help staff not become too attached to patients. It’s not real communication, because the same tone is used for all. It’s annoying and condescending. Frankly, I’d rather just have someone tell me to get my patootie out of bed and get moving.
Denise said on April 23, 2012
Hi Kristin–I honestly have always enjoyed the sound of your voice. I think you have a great combination of lets-get-this-done and compassion for how it can be to be on the other side of lets-get-this-done.
Your insight about the duality of the situation is so interesting: “And telling an 86-year-old who was accomplished in many areas during her active life that it is okay to pull up her pants now is also difficult. The now-toddler Mary needs direction that the octogenarian Mary cannot tolerate hearing.”
When speaking to two, how do you use the inflection and words? It seems like it’s about trial-and-error from moment to moment. (And, then, sometimes, calling a daughter for help–like you did the other day.)
I also wonder: Do you think Mary senses that you feel your voice could be a weakness and pounces on it? I guess I’m wondering how you know when she’s pounced on a perceived weakness? As I’m writing this out, I continue to wonder a few things.
I guess: How do you know it’s the disease versus her ability to manipulate? And, if you can figure out the difference, who do you respond differently?
Jan said on April 23, 2012
Wow… you really touched on a major issue for me, Kristin! Voice modulation. Just one of the many things I have to constantly keep in mind when dealing with my mother. She’s hypsersensitive anyway, and perceives everything I say as a command, or a rebuke, when of course, it is not. If she even suspects a hint of superiority, which she often does because of her insecurity, she responds with sarcasm and/or martyrdom.
Nothing like walking on eggshells, is there?
But you are so patient, and have such compassionate heart. You know just what to do. Wanna give us lessons?
kristin said on April 23, 2012
Jan, your mother sounds a lot like Mary, except she has the martyrdom piece. Oh, I don’t envy you; that’s a hard one to deal with. I just have belligerence and refusal. Your basic 2-year-old. She is beyond the point where she can use sarcasm or be snide, as both of these require humor. You have a much more diverse palette of emotional responses to deal with and dance around, and my heart goes out to you!
kristin said on April 23, 2012
Denise, I don’t think Mary has the wherewithal now to discern subtleties of voice. The subtlety comes into play in my discerning where her brain is at any given moment. I can say the same thing in the same voice two days in a row, but if she is more “Mary” than “dementia” she will take it as condescension. Mary was always quick to take umbrage at anyone’s comments, no matter how innocent, and I think this is an automatic response by her to someone telling her what to do. When she is more confused and lost, she just accepts without comment what I say. It is in her responses that I can tell whether I am dealing with Mary or Alzheimer/Lewy. When she is the latter, she is actually nice. When she is Mary, she is a bear. So in the morning when I go in to get her up, I have to pull back the covers and move her legs to the side of the bed, as she can no longer initiate this movement. I will have thrown back the curtains and will be remarking on the day, the forsythia, the weather forecast, the cats, etc. as I do this. If she resists my efforts to move her legs, I know she’s Mary; if she just goes with the flow, she’s confused and acquiescent. She can start out confused and easy to work with and, in a flash, become Mary, as she did on the toilet [By gosh, no one is going to tell ME when to get off the toilet!]. Mary no longer has much of a sense of humor, so I can’t use this as I used to when she was being difficult.
So it’s a dance I think we all do as caretakers. Think of Bette in response to her mother’s fears, ejourneys in response to her partner, or Kathy soothing Hubby. You’re right that it is moment to moment, a continual assessment of the situation, the mood and opportunity to do just the right thing. I won’t tell you how often I fail at this, but I do keep trying to get it right.
Karen said on April 23, 2012
Kristin–I am in awe of you. You have taken on an incredible and incredibly difficult task.
Years ago I read something that I think applies to you: Some people hold up a light for others to find their way. Some people are themselves a light showing others the way.
You say that you are not selfless. You come as close to that as anyone I have every known.
Blessings on you. And hugs. And prayers.
Karen
kristin said on April 23, 2012
Thank you, Karen, for your kind words and prayers. I assure you, my friends would not recognize me in your description, but I do believe all of us caregivers, no matter how we ended up in the role, are beacons. We do what others can’t or won’t do, and we become open to learning a new way of being with another person.
My best to you and a big <>
ejourneys said on April 23, 2012
Kristin, bless you for carrying — and being — this light.
As I write this my partner is reading on the floor, wearing earplugs because the sound of the wind outside makes her tense up. If I need to communicate with her I must get her attention first, so that she can take her earplugs out.
I also have to watch my body language, because she is sensitive to that, too. No hand on hip, even in repose! And if we are talking about anything emotional, my head cannot be higher than hers. At least she doesn’t lie on the floor when we do “emotion talk.”
I think “nursing home perky” is armor, but maybe also one less detail to attend to amidst the need to remember x number of details for x number of people. Not that that excuses anything.
I think your voice sounds just fine.
kristin said on April 23, 2012
Oh, ejourneys, your situation is so much more complex than mine! All the little things you have to watch out for! I picture you walking through a minefield – it’s not even completely figurative, as you have all that hoarded stuff to navigate as well as the emotional IEDs. I didn’t mention it, but I also have to watch my body language very carefully in order not to come across as authoritative. No hands on hips here, either!
Bette said on April 25, 2012
Hi Kristin,
I like your voice. It shows knowledge and stamina in a very very difficult disease and with a very very difficult caree. And, to me your voice brings comfort.
I understand about hearing the directions – repeated sometimes over and over. The dementia series with Claire Day that Denise has been doing on BlogTalk Radio has been very helpful for me. Yesterday Kathy (from the chat room) talked about tapping with Hubby when giving directions. That was so interesting because this is something just within the last week that I’ve started – now in hearing someone else’s experience, I’ll keep doing.
It gives me a rest from hearing my own voice. I can begin to give the directions and then tap the rest. For instance, “now take your hand, mom and put it on the handle next to the toilet”. Now: “your hand can go (tap, tap on the handle) – oh, how this is helping. It helps me and I know it helps her because too many words confuse her.
You can access the shows here:
http://www.blogtalkradio.com/search/dementia-care-answers/
The shows are entitled: “Dementia Care Answers”.
I think of you daily Kristin and hope there is something coming up soon just for you, to look forward to and to enjoy. To have conversations without the directions.
kristin said on April 25, 2012
Until you mentioned it, I was not aware that I “tap,” but I guess I do, especially in the bathroom, but I think I give the verbal direction as i do it. I’ll have to monitor that. No point in doing that if I’m giving her a non-verbal cue as well. I’ll have to look for more opportunities to tap. Thanks for the heads up.
I did listen to a couple of the shows and found them helpful.
This is a fallow period for me – no writing class, book group, etc. But in July I go to CA to see my sister, so I have that to look forward to. Mary’s oldest daughter, from Portland, stays here in my stead.
I also think of you and your family every day and send you love and hugs.