Ifs and Whens
September 2nd, 2006
Several times this past week I’ve heard myself telling someone that my mother would probably be moving into assisted living fairly soon. Each time the words startled me–as if I were hearing someone else saying them. I don’t know when the “if” became “when”–or even if it truly has become “when”–but a part of me is clearly readier to think about the prospect.
Since I last posted my mother has been having “good” days. She still asks me each and every night “Where did everyone go?” She still looks for my father before going to bed. She still sits in her place on the sofa for most of the day, staring at her hands or falling asleep. But no unusual agitation, like last Tuesday. No wanting to “go home.” No wandering at night. I did have to remind her to change her clothes on Thursday, which she did readily. But we were back on that steady keel that lulls me into thinking we could go on like this indefinitely.
Maybe I know just a bit more surely that this won’t last? Maybe I’ve seen enough days like last Tuesday that erupt out of nowhere and become the new reality before dissolving? And each time that happens I absorb just a little bit more of what Alzheimer’s means, and this knowledge stays with me–scares me, actually. No matter how much I arm myself intellectually, I’m never emotionally prepared for my mother’s dissonances. Part of me remains status quo, but another part of me panics. And the way I cope with panic is to act, sometimes doing something I never thought I’d do, just to manage the horrible feeling in my gut.
And so I took time during one of the days I took off to do some more hard figuring, some creative visualization about my mother’s potential move into assisted living. I’d been dragging my feet a bit on the Aid & Attendance–I pulled the application and forms out again and requested a “pro forma” from the facility whose waiting list she’s on, in order to project her financial need. I then made a worksheet of her living expenses in the facility and at home. I suggested to my sister that she think about moving into my mother’s house (and keeping up the expenses, which are pretty low) when my mother moves into AL, at least until the house goes on the market–since my sister is unhappy in her living arrangements. Doing this has calmed me down.
Each time my mother disconnects more–even if the disconnect doesn’t last–I see the future. And I understand why I was advised to investigate assisted living in advance. I can imagine that the next disconnect will push me even more deeply into that panicky place where I must do things I just can’t imagine doing right now. Right now I pray that the admissions counselor will not call to tell me there’s an opening for my mother–at least, not until after Christmas? I still pray that she will never have to leave her house, but I wonder just who I am trying to protect with that prayer?
I feel so false to my mother by not involving her in these preparations, but I’ve played out that possibility in my mind countless times, and the only way it works is if my mother is her old self, able to understand the situation. I bring it up with her occasionally, usually in the nurse practitioner’s office in the hope that hearing it from someone other than me will make a difference for my mother. But I know that “if” and “when” moving becomes the only alternative it will be tough going.
And so I keep in mind what her doctor told us at our last visit. “It’s going to be harder on you than it is on her,” he said, and I sensed that there was truth in this as well as reassurance.
September 3rd, 2006 at 1:36 am
Deb,
I am in very much the same situation, delaying over paperwork, talking in only hypothetical terms to my parents about moving into a home, and struggling to find the certainty that one path is the right path. I cannot offer any words of wisdom. It seesm the days of easily solved problems are behind me.
Cheers, Mike.
September 3rd, 2006 at 2:59 am
Hmmm…for once, I am speechless, but I want you to know I’m here, I’m reading, and I’m thinking about you, your mom and your sister.
September 3rd, 2006 at 10:03 am
My mom is 85. She fell and broke two thoracic vertebrae a little over a year ago. Now she uses a walker to ambulate. Otherwise she is totally independent. She has lived in an assisted living complex for the past 7 years. I realize the definition of assisted living may vary.. but in Mom’s place she has her own apartment and is very independent.. but there also is a common area on the first floor for meals and planned gatherings. She loves it there. She is a very social woman and loves the interaction and has made many friends. In my mom’s case.. it was her decision to move into this facility and she has said many times how glad she is that she made the move.
I understand how your situation is so very more complex and difficult. You are having to make the decisions for your mom. My heart goes out to you.
I guess I just want you to know that my family’s personal experience with an assisted living facility has been very positive. And I have heard that if they call to say a space is available.. and you do not feel your mom is ready, you may decline and still maintain you place on the waiting list.
Good luck with all of this. I know it is so very difficult.
September 4th, 2006 at 6:33 am
Deb - My sister and I are going through the exact same thing now. We’ve been telling ourselves that we’ve been waiting for Mom to make the decision about AL, when we know very well that she can’t even decide what to wear or to eat. When we bring up the subject of living at the same facility as my dad, she just repeats herself like a broken record: “Are you saying Daddy isn’t coming home?” and “This is the only home I’ve ever known.” Her short-term memory gets worse and worse. And so, the situation forces us to make the decision for her. My thoughts are with you at this difficult time.
September 5th, 2006 at 11:06 am
Once the decision has been made and you find a place where they will truly CARE for her, you will have a little peace of mind believe it or not. I don’t know what we would do without the wonderful staff where my Grandmother is - they know me and my family and anytime we walk in we are greeted with smiles. They will tell us what Grandma has been up to for the morning, and it’s comforting to know that they pay attention.
You HAVE to make decisions for your mother. She can’t. There will be times when you leave and she will cling to you and not want you to go. It’s hard. There are good days and bad days as you know. Eventually, her moment-to-moment comfort is the only thing that you will care about, and finding a good AL place to provide some of that comfort is like taking part of the world off of your shoulders. Good luck with all of this. You will do the right thing when the time comes.
September 5th, 2006 at 1:51 pm
Deb,
We didn’t have to make this decision for my father, so I can’t speak from experience. But I’m sure you will do the right thing at the right time.
September 5th, 2006 at 2:31 pm
My best advice for you is to contact the Alzheimer’s Association and make an appointment to meet in person with their family coordinator. He/she will have a lot of info about your options, have heard a lot from other families about what the facilities are actually like, and be able to help you come up with a plan on how to handle the move (for your mom).
Also, the thing that will most define the facility is the executive director. Find out if he/she has a background in working at assisted livings and why he/she got into this field. I think its better if the person really cares about the needs of people with Alzheimer’s rather than comes from a purely business background.
September 8th, 2006 at 11:06 pm
Oh, you’ve got me crying. This is what we’ve been struggling over for the last week - with the final meltdown today. I’ll be thinking about you - I know how hard this decision is.
September 8th, 2006 at 11:22 pm
After reading the posts by Karma over the past week, some ghosts started rattling their chains and I thought I may as well post this idea I had when I struggled unsuccessfully with my father’s care in a nursing home. What Karma and others write about is systemic, it’s everywhere. With a problem this universal, it’s going to take huge sweeping legislation to change institutional care for the elderly and give our parents a decent night’s sleep. Anyway, here’s my idea, for what it’s worth.
DO WE DARE LOOK AT THE ELDERLY IN NURSING HOMES?
How do we address the care of our elders, before they die but after they’ve lost their independence?
One things for certain, we’ll all have close personal knowledge at some point with death. We’ll experience it in as many different ways as there are people on the planet. But before death comes, many of us will be cared for in nursing homes as our elders are today. What is that like? How little we know and how much we need to learn - now! - while we have the time and the opportunity to get it right! For instance, how many of us can answer the following questions?
How does it feel to not sleep beside your spouse?
How does it feel to be unable to communicate your needs?
How does it feel to be dressed and undressed by a stranger?
How does it feel to be fed, not when you’re hungry, but when it’s “time”?
How does it feel to be fed what you don’t like to eat?
How does it feel to not drink when you’re thirsty?
How does it feel to be really thirsty, offered water through a straw you don’t remember how to use, and have the water taken away because you’re “notthirsty”?
How does it feel to need to use the bathroom but have to use a diaper?
How does it feel to wait for a stranger to come in and change your soiled diaper?
How does it feel when you have to wait for hours?
How does it feel to wait overnight?
How does it feel to holler for help and be ignored?
How does it feel when you can’t bathe yourself but have to wait for your twice weekly bath by a stranger?
How does it feel to want to hug your child but you can’t move.
How does it feel to cry and be ignored?
How does it feel to be hollered at to believe in Jesus when you’re Jewish?
How does it feel to be cold and not pull your blanket up but instead have to wait for someone to notice, in the middle of the night?
How does it feel to be placed in a wheelchair for hours in a room full of strangers in wheelchairs with no music, no sound other than the CNA talking on her cell phone?
How does it feel to never go outside in the fresh air and sunshine?
How does it feel to know you won’t get past the front door until you die?
How does it feel to be talked about as if you weren’t in the room?
How does it feel to know you’re spending down your life’s savings to pay for this care?
How does it feel to not get your teeth brushed for weeks?
How does it feel to have your skin tear when you’re pulled?
How does it feel to not move and develop bed sores?
How does it feel to not have them heal because you’re only bathed twice a week?
How does it feel to have them spread?
How does it feel for your children to not see them because they’re on your bottom, under your diaper, under your clothes?
How does it feel to hear the nursing home won’t install web cams because they want to protect the privacy of their employees?
How does it feel to be old, incontinent, with Alzheimer’s, in a nursing home in America?
These are all ordinary, everyday situations that our parents in nursing homes all over our country face on a daily basis. Don’t believe me? Ask around - you’ll hear the same heartbreaking stories coming from all over the United States. Ask your legislators if they know what’s going on. And if they’re shocked ask them if they would dare do something about it.
THE DARE
I have an idea but I need 12 brave legislators to take a leave of absence from their posts for one week. Preferably the ones who have campaigned as strong advocates for the elderly. And since Florida leads the country in aging, that would be a great place to “host” this event.
I propose they take up residence on one floor of a hotel, set up to follow ordinary nursing home procedure. This will be there “pod.” Theyagree to be diapered, and unable to walk, bathe or feed themselves for one week. They rely soley on one statistically-average aide - no education other than CNA certification, unverified background check, questionable documentation, no experience - to do all of their care. This aide will make only $8 per hour. There will be one aide only - reflective of the acceptable staffing ratio in most nursing homes - 1 CNA to provide ALL the care for 12 residents.
These “residents” must not talk, they must not move, they must not read, they must not verbally or physically communicate, they must not do anything but lie there. They can moan, they can cry out, they can grab the hand of someone walking by, but they can’t articulate their needs, no matter how dire.
They can’t propel their own wheelchairs, they can’t lift themselves up, they can’t roll over in bed, they can’t get water when they’re thirsty, they can’t get aspirin when they have a headache, they can’t use the phone, they can’t go outside in the sunshine and fresh air, they can’t do anything for themselves. They can do absolutely nothing.
They have to exist as the patients of nursing homes exist, entirely dependent upon others for their care.
DARING TO CARE
When the week is over, we’ll have the information we need to address the nursing home system as it exists today. Maybe it will be great, maybe it will be awful but either way these 12 elected officials will know first hand what they’re legislating about, care of the elderly. If everything is fine, we won’t have to change a thing. If everything needs to be overhauled, these brave 12 can lead the way for the rest of us who just don’t know what it is we’re in for.
I believe that experience will change the laws in the state of Florida within one week. And if this one-week experiment is conducted nation wide, it will transform the way we care for our elderly.
The men and women who swear to lead us, to govern us, to protect us, should know first hand that the golden years have turned to lead in our country. The men and women who campaign tirelessly to attain their elected office should be willing to give us this one week, just seven days, to see firsthand how shamefully the nursing home system, as it’s structuredtoday, is failing our elders.
Without that knowledge, how can they honestly say they know of what theylegislate? WITH that knowledge, they’ll have the power to pass the mostsweeping legislation in our history.
Our mothers, fathers, aunts, uncles, ARE these elderly people. For once and for all, 12 legislators can transform this haywire nursing home industry by participating in this challenge. All they’ll have to do is nothing. When has it ever been possible to accomplish so much by daring to do nothing.
Thank you for your consideration.
Sincerely,
Patty Doherty
PS. Oh, and one more thing, these 12 legislators will have to pay $1500 each for their care - the average cost of one week of average care in an average nursing home for an average Alzheimer’s resident.