Shannon is in town for the weekend. So naturally the family got together for a barbecue yesterday. What was supposed to be a restful family afternoon or card playing, pie baking, summer goodness had its bumps. In fact, at one point it bumped my out to the front steps in the dusky light choking back tears on the phone as I left a voicemail for the social worker, "I know it's Saturday and you are unavailable, but Mom's being horrible and we don't know what to do."
Nothing, absolutely nothing is making mom happy. And no one, absolutely no one can get through to her regarding the two expectations I wrote about last post.
While it's apparent to me that this blog to date has not represented a success story, it is the truth of what is happening, and that was my goal from the get-go: to share an honest representation of the days we travel on this winding path. These are, I pray, the growing pains of the situation. The settling in. The labor pains. I was talking to a friend yesterday and she was likening it to the first couple weeks of anything new: "It's like the first pancake. Just throw it out." So I'm tring to throw the negativity out the window. But still. I gotta tell you some of the highlights.
First, David the physical therapist went by to see her yesterday morning as promised. Only Tokasa was there with her because the rest of us were at the grandkids' Tae Kwon Do tournament. The report we got from Mom later was that he just stopped by to say hi. That was it. All happy and smiles. We knew better but let it rest for the time being. And then later, after her physician phoned me to tell me that the skin culture taken showed infection and Mom had to start two different antibiotics immediately that were waiting at the pharmacy, it came out that he was very disappointed in the state of her pressure wound and it was all Tokasa's fault. We told her that was BS, and in no uncertain terms it was absolutely NOT Tokasa's fault because no one can get mom to rest off of her back on her side for an hour twice a day like she is supposed to do (or follow any directions for that matter). And furthermore, she sceamed at Tokasa for calling the nurse on Friday when the bandage fell off and Tokasa was worried about infection. We got mom to bed, resting on her side for a bit in the afternoon, last thing she said was, "You know that big green painting bucket in the backyard the baby plays in the water with? Just bring it to me and I'll dunk my head and drown myself!" So, that was round one.
But the most grevious thing that happened was that Brooke caught mom swatting at Tokasa when she was trying to move her wheelchair. Brooke called her on that immediately, You CANNOT hit anyone. What are you thinking? And she said, "That was only after she has been mean to me all day." Well, we had been there all day and that was just not true. Brooke said to her, "Nanny if you could see yourself now with the eyes you had twenty years ago you'd be so ashamed of your behavior! "
Sometimes I wonder. Is it age or is it her deep seeded anger. Probably both.
Thus, the approaching darkness found me on the front steps dialing the social worker with a lost plea for help. And then I had to kind of laugh. Had I brought her the big green painting bucket? She would have snapped that it was all wrong, I should have brought a pillow.
Just venting. Not in any way giving up. We didn't play cards. We did make the pies. But nobody actually got around to eating them.
So what have the past few days brought? All the grandkids started school on Wednesday so we had a pizza party to celebrate at Mom's house that evening. At the same time we offered Tokasa the opportunity to go out for dinner with her friend, which she did. It was a nice evening, (althought I was on the phone with Comcast for over an hour trying to get another phone line downstairs for mom.) Mom's Parkinsons no longer allows her to sip her chardonnay from a lovely glass, but she gets 'er done with a tumbler and a straw!
It was important for me to let Tokasa go out so that Mom could have some space to speak freely her own frustrations during this transition period. We sat together and I was certain I was not going to let my old tapes run in my head about how ungrateful mom could be, and I didn't. I engaged in the conversation with her about how things were going from her perspective, only offering questions in response that allowed me to see deeper into her feelings. Bottom line was, she didn't feel that Tokasa knew how to take care of her physically. I can understand this after she has just spent four months in a facility where caregivers had much more training. What Tokasa does have going for her is a prayerful heart full of love. We are in the process of completing a job description over the weekend to reflect upon how things have settled in and where we go from here. (Thanks, Jane.)
It must be so hard for a caregiver to attend to an elderly person. Folks say it's like having a toddler again but I don't think that's true. Toddlers are new and sweet to the world - stumbling and tumbling about trying to find their way. Their first mornings of Spring. On the other hand, the elderly too, are stumbling and tumbling about, but behind them they are dragging huge valises full of ideas and memories, successes and failures down a winter's path as they go. Theirs is not a path full of flowers and wonder. And more times than not, they let us know loud and clear.
"I'll just sit here and keep my mouth shut and let everyone tell me what to do."
"Can we JUST CHANGE THE SUBJECT? All I hear is people telling me what to do!
"Can we just stop talking about my butt for one minute???"
I have deep compassion for this, and how shitty it must feel. To slowly lose your autonomy to an adult standing in front of you who used to be your child. Someone who once knew so little and in whose eyes you were the trusted final word. And now that person has gray hair of her own and is constantly nagging at you to follow the rules. My heart aches for the elderly.
And it's a catch 22 for adult children of the elderly. In my case with mom, the area of my nagging is about getting her to:
1. Be kind and not rude.
2. Follow the doctors orders to prevent her pressure wounds and edema.
Basically, I'm happy to just stop there. The rest I can deal with. Or, better said, let her keep her atonomy and deal with on her own. But the catch 22 comes in when I am trying, with every ounce of sanity and devotion and respect to her as my mom, to keep her physically well which requires some action on her part. She needs to lie down and take the pressure of of an area that is broken down on her mid back. It was a huge bedsore when she went into the hospital 4 months ago. She is to do this every afternoon for two hours. She absolutely refuses. She lies and argues. Things like, "One of those ladies (the physical therapist, occupational therapist, home health nurse) told me I could sit in my recliner with my feet up instead." Well, that makes no sense because it only provides more pressure on the weak area. But to tell her this is always a fight. Why is it a catch 22? Because to force her is viewed as elder abuse, and for her to show up at the hospital with 6th degree wounds is elder abuse. No matter what happens, the adult child trying to keep her physically healthy is often to blame. What I have found helps me is to work directly with Adult Protective Services. They are really the good guys if you solicit their knowledge and expertise. They have to see how hard we're trying. Nothing is more heartbreaking than to be standing at your mom's bedside upon admittance to the hospital with yet another UTI and having nurses and doctors talk to you with apparent disdain as they look at her back, "How did THIS get like THIS?" ...when you have fought your mom everyday to do as she was ordered by her doctor.
So this morning I called the physical therapist, David, whom she loved from the nursing home and solicited his help. He's no longer part of her care team, but he agreed to stop by on his own time tomorrow morning and check in with her and hopefully be the change she needs! God bless this man. I need to do something really nice for him.
And a little funny aside for all of my friends here in Blogland: many moons ago, when I was young and hot :), and worked at the state hospital, there was an acupressure in-service that we were required to take. Well, David and I were from different departments, but he was my partner, and little does he remember that I once applied pressure to his upper inner thigh. hahahahaha He was handsome and I was cute, and we were both timid and shy. Of course, I will never tell him. ;)
Sundays are, still, the day that I visit with Mom. Just visit. No matter how crazy the week has been full up with her care, I go to her and simply visit on Sundays.
Yesterday began with a trip to the market to do their weekly shopping. Even though it was our intention that her caregiver plan meals, shop and cook, that has not been happening so I felt the necessity to load up the frig and cupboards. It was a strange phenomenon shopping for Mom. Her appetite has diminished with age and her palate leans more toward comfort food or crappy food, so my inner teen kind of shopped vicariously through her. This shopping reminds me of the shopping I did as a young teenaged mother, straight out of a Mid-western/Southern influenced, 1950's home, before I hopped on the nutrition train. In all honesty, it was kind of fun. I haven't perused the kinds of Hamburger Helper on the shelves in years and years. Or frozen chicken strips. Or Safeway bakery items. I don't even shop at Safeway very often. But this is what Mom likes and knows, and it was a trip down Memory Lane for sure.
But at home, out behind Shannon and Issacc's home where Mom lives in the downstairs' appartment there lies redemption. So when I got home, and the groceries were put away, I rolled Mom out to the patio for some fresh air. We sat togther in the late summer heat. I knitted some. And she fed grapes from the vine to little Emil. And Ike and Isaac and I picked some sun ripened fruits and veggies for the week. It was a nutritional balancing act for sure.
I think this day fed Mom's body and soul.
Everyday this week has beckoned me forth to sort through some details of Mom's homecoming. The nursing home recommended us to Accent Home Healthcare providers. They are really a lovely group of helpful young professional women who truly want to help.
First thing yesterday morning I had an appointment with the bank manager to sort out Mom's accounts. When I lived in Chicago Mom was the victim of elder financial abuse. When I returned, her savings had dwindled down to zero. Nada. It has taken us since 2011 to rest this case in the courts. She has received a small percentage of what was taken in restitution and I am doing all that I can do to protect it for her now. As far as we can foresee, at her current need level, it will last her about 1.5 years. And then we will have to bless the loaves and the fishes.
I then met the physical therapist at Mom's house where she worked with her on getting up and down from her chairs and walking a bit. Mom has two kinds of Parkinsons' disease, and basically she has reached a plateau in her abilities. because truly, she has just completed 4 months of PT Boot Camp, being in the rehab center. But Mom seems to really like Sarah, the physical therapist, and was proud to show her accomplishments for her four months of very hard work. I too, was impressed. While it is clear she can never live alone again, just to know that she can help herself transfer is the greatest news!
While they worked in the bedroom, Megan the social worker arrived and we sat together at the kitchen table where she asked me many questions and was forthcoming with a full sheet of resources that would help me through our personal challenges all the way from Volunteer Wheels to a suppot group for me. I think she is my new BFF.
Mom is very frustrated with Tokasa, which in no way is a reflection on Tokasa. That is Mom. I knew from the moment we came to the decision she would come home with a full time caregiver that she would not like that person. She was not liking that person way before we even started interviewing. I know Tokasa is a loving and kind caregiver. After the gaggle of professionals left yesterday Mom kept whispering her angst to me. A ninety year old, hard-of-hearing woman does not whisper. She is concerned that Tokasa does not have the strength to help her physically. I told her we have to wait until we have the new bed. The situation for transferring now in far from optimal. While I do have this understanding, I also respect Mom's fear of falling. So does Tokasa. Tokasa told me yesterday she feels so sorry for Mom each day. She knows how full of angst she is. The good news is, the very goodest news, her hospital bed with the air mattress arrives this morning!
So all that said, then the catty stuff begins. Mom whispering (or so she thinks) that Tokasa "is a nosey one." I scolded her on this one: "Mom! Stop!" And she answers, "Well I'm just telling you for your own good!" Here is where I can see the dementia that she is diagnosed with and I argue against. yesterday the social worker asked me if Mom hallucinated. I thought not. But now I wonder if this might be a kind of hallucination, because she thought the same thing about her roommate in the rehab hospital. She said everyone was so nosy and wanted to know all her business. Tokasa does not care in the least about Mom's private business. What is there to care about anyway? Tokasa is a soft spoken, slow and intentional moving, prayerful woman.
So as I sit here and write, I'm having somewhat of an epiphany regarding Mom's mental status. Or, my definition of dementia. Maybe I just don't know (and don't see) her deterioration for what it truly is. Maybe dementia has set in and I need to be open to that fact. Maybe I need to lower the shield I hold in front of Mom and allow the truth of the situation to be seen.
Man-oh-man I feel a lesson coming on. But first I have to shower because Mom needs to be at the doctors at 9:30! And then I have to be to work by noon.
So, the deal is (for now), Tokasa and mom make a menu and a shopping list and I do the grocery shopping on Sundays for the week. Which, we did last week. Tuesday was chicken soup day, Thursday, beef stew day. I went to the butcher and bought the best, the healthiest local meat. Yesteday when I stopped by to bring the laxatives, Tokasa asked me where was the chicken. Well, last time I saw it, it was in the grocery bags I handed you from the car. We looked in both refrigerators. We looked in the freezer.
They lost the damn chicken!