August 16, 2016
Save Additional Heartache, Be Prepared for a Health Emergency Ahead of Time
Last Saturday I made the call that will forever change my life. While on the way to Mackinaw to drop my son off for a week of scouts, I called my mom so my son could say goodbye.
"Good morning mom, how are you?" She has terminal cancer, multiple myeloma, so this is a common way for me to start a call. Her answer was also pretty common when she said, "I'm OK" using a downward inflection to indicate that she really wasn't.
"What's wrong mom?"
"I know there is, what's wrong?" I did not yet know she was having difficulty speaking.
"Well, lijcsaef jnvjan n hjbhjvj nbn v."
I thought, that since I was in northern Michigan, the phone might have been breaking up. So I asked again, "Can you say that again mom?"
"Well, lijcsaef jnvjan n hjbhjvj nbn v."
At this point, my voice started to increase a bit and get edgier. "Mom, something is wrong. Are you OK? I think you might be having a stroke!" Her cancer though does weird things to her body. Sometimes when her electrolytes are off she does this, so I wasn't sure yet. Typically she just sounds a but drunk, and not like she is making up words, but I needed to know more.
"I am fine" She said.
"Mom I don't think you are, can you tell me how you feel?"
"Oh I know. But, Lijcsaef jnvjan n hjbhjvj nbn v."
"Mom, mom you are having a stroke. Lift your arms, are they both lifting equally" My intensity had risen so much that my children were now awake, a bit more aware of what was happening and also concerned. My mom had also begun to increase her intensity.
As I am beginning to realize what's happening, I cannot remember the other stroke symptoms to ask about (facial droop with a smile) but I KNOW I need to call 9-1-1 only I am in Northern Michigan.
"Mom hang up the phone and unlock your door. I will call you right back. Please answer."
I immediately try my husband who should be home, then call her neighbor. Her neighbor Barb answers and immediately leaves for moms apartment. She is the one to call 9-1-1. Within minutes the ambulance is there and I am talking to the paramedic on the phone. Unfortunately I was likely the last person to speak to my mom (around 10:30 the might before) and they can not guarantee that we have caught her stroke within the first three hours, so there is little they can do except to rush her to the hospital.
The acronym FAST then flies through my head, but I and the paramedics are fairly certain it is a stroke. I am eternally grateful that she answered the phone; I would not have worried about her for a few hours since she often doesn't answer right away. The chemo has been tough on her and she gets tired easily lately. Sometimes too she just doesn't hear the phone.
Since Saturday though, things have been hell. Mom intermittently seems to know, or not know, me and my brother. We are not yet sure who we will even get back. The stroke, a massive one, affected the left side of her brain, which means she has weakness on the right side of her body and much of her ability to speak is gone.
Mom is now limited to saying yes, no and um, with other words popping in and out of her brain at random times. A friend of mine who is a speech therapist suggested I ask concrete questions of her though. That way could better gauge her understanding. So this morning when I arrived, I asked her:
"Do you know who I am?" (of course she says "Um, yea.")
"Am I your relative?"
"Am I your daughter?"
By now she is firmly reminding me of the movie Rain Man. I believe she will soon tell me what time Judge Wapner comes on, but I continue my questioning. I am still not sure she knows what she is saying so I try the technique Julie told me about.
"Is the door to your room open?"
(without looking) "Um yea."
"Do you know where the door is?" Can you point to it?"
"Is the light in your room on?"
By this point I am thinking perhaps she does know so I ask a couple trickier questions.
"Is it raining in your room?"
"Is my shirt pink?"
My shirt is navy blue and clearly is is not raining in her room.
Now I don't know what to believe, but I do know that asking yes and no questions is not likely to get me any closer to the answers I ultimately need.
Later I show her photos. She seems to perhaps know who the photo is when I show her my brother at age 5. She's not sure about the grandchildren though, and I feel fairly sure she doesn't know me. When I show her photos of my grandma however, her mom, she starts to cry. I know she knows who that is, and I feel a bit better that perhaps my mom is still in there. I cry with her. Both tears of joy, as well as tears of fear, frustration and sadness. This is not how she wanted to live and for the life of me, I can not understand why a terminally ill cancer patient is being killed little by little. Her humanity is being stripped away and everything she never wanted is being forced upon her.
My brother and I will get through this. With MM we knew she'd die. The horrific transplant she went through failed and she did not go into remission. We knew, that at some point, we'd be calling it quits. I have yet to speak to the oncologist, however the chemo that she is on is one she is repeating. She did not do well on it initially, and she has had several deadly side effects with it in the last couple of months. At this point, I am feeling that with this last scare, he is likely to take her off chemo and the cancer will win. That is for another day though. For now I have to focus on her and making the best possible plans for her future. My brother and I have to be good stewards for her.
So when the rehabilitation physician came in to speak to us, we knew what she'd say. I don't think either of us was ready to hear it though. "Your mom will never live alone or drive again." My stubborn, bullheaded, giving mother always said she did NOT want to live like this, and here it is.
It took a bit for it to sink in, however today my brother came in determined to turn in her leased vehicle early.He will feel better getting something done before he goes home to South Carolina. The call went as expected. They would not speak to us since neither was on the account. I jokingly said he should let them speak to her. After all she would likely answer like this:
"Hi Mrs. S., is it OK if we speak to your son/daughter?"
We went back to her apartment to pull out her purse, check-book and other financial information. Luckily I had the will she had done in 2003.She had put my brother and I on her bank account years ago too, so that should help, right? Today though, when we went to the bank, they could not fidn the signature card that I know what done. Which means we don;t have the necessary access to her account.
I know we will get it, but the additional steps we will need to take will add time, energy and undue stress on both of us before we can get it done. Clearly she is in a semi-vegetative state and cannot care for herself, and within the wishes of the will she indicated her wishes. I just did not need this today.
So today I wanted to offer this bit of sage advice...
Dear Friends Young and Old,
I wanted to share some thoughts that EACH of us needs to take care of. PLEASE have this information available for someone you love.
1) Gather passwords, user names and pin numbers to important online accounts. Put them on one master list and keep it in a safe place.
Don't assume your loved one knows or remembers your passwords or user names. Besides, when you change a password 15 days earlier there is NO WAY your loved one will know that. My mom changed several passwords recently when her account was hacked. 15 days ago precisely.
2) If you live alone, or yous spouse has ill health, fill out a bank signature card adding someone to your bank accounts. ALSO don't assume the card is always current. Accounts change. UPDATE, update, update.
If something happens and your connection can't get access to your accounts (like you thought), it really sucks. I KNOW I went into the bank and signed a card. My brother actually sent one from South Carolina. We don't know why the bank does not have the signature card but it's not there. Now we don't have legal access to her accounts!
3) Send IN any medical power of attorney forms. They are no good sitting in your pile of paperwork at home.
I found my brothers power of attorney form, witnessed and notarized for him, but not signed by my mom, sitting in a pile. Actually I found 4 copies of the form that the various hospitals sent. I MAY have one that was submitted when she was at Karamanos for her transplant, however EACH time she goes into the hospital or medical facility I will need a copy of that form.
4) Have a will AND power of attorney AND a living will. Just a will alone is not a whole lot of good when you are in a vegetative state.
My mom created a will using cheap software. Thankfully she had it witnessed and notarized, so that SHOULD make things a bit easier, but the one paragraph dropped into the will about my "brother and I having and getting access" will not stand up unless it was part of a separate document. Now we will need to hire an attorney to get anything done.
5) Have a master document that contains all your bills, account numbers and account information. Then please put it in a safe place.
I have the credit card info and her cell phone so it's a bit easier to make calls on those, I also have access to her email on her cell phone, which helps. The biggest challenge though is with the OTHER accounts. So now I have to wait for mail and bills, and I will be constantly checking her mailbox at the apartment. No one needs the stress of paying their own bills AND someone else, but the added stress of having to actively track down information is a lot to handle.
I'm sure there will be more tips that I will remember later, but this is my current list for you... PLEASE don't make it harder for your loved ones than it already is. While my husband and I are not perfect, I do have #1, #4 (which covers #3), and #5 complete. #2 is kind of irrelevant if the other paperwork is filled out and you have a spouse. Please, please, please help those you love and take care of this information for them ahead of time. it will save them a lot of time, energy and heartache in the long run.