I entered my mother's room. She was sleeping. At two o'clock on a Sunday afternoon. She rarely slept the afternoon, but it wasn't completely unheard of. I relaxed in her recliner to wait until she woke. An hour later she was still sleeping. So many health issues in so few weeks: three hospital visits resulting in two admissions during Christmas week. When she is admitted I stay with her around the clock, except during relief by my brothers or sister-in-law, so she won't become confused, upset and need to be sedated. When she sees me or hears my voice, she calms down. It happened every night. I asked the nurses to set the bed alarm at night because she wouldn't argue with them the way she argues with me. The main thing was keeping her calm and feeling secure.
We got through the holidays. And then she was bed fast. I met with the head nurse and physical therapist. Does the nursing home staff expect me to believe they "are doing their jobs" when I can observe the signs they are not? THEY are the ones who said the doctor talked to the nurses on the floor via the telephone to determine her condition and subsequent care, to decide if she should be transported to the hospital for the ER doctors to determine her condition, it appeared, so he wouldn't have to be troubled with earning the fees he was being paid. I am the one who said, "He's on thin ice with me. HE is the doctor and he will use his own eyes, not the nurses' eyes to take care of her or I'll replace him." (I can do this because I hold the health care power-of-attorney and I won't hesitate to do what I believe is in my mother's best interests.
To get a call about orders for a salve to heal the rash in Mom's abdominal fold was disturbing. If they are bathing and powdering her abdominal fold daily there probably isn't going to be a rash there. I don't expect perfection from them. And I'm trying very hard to be reasonable. However, this is my mother...the woman who sacrificed everything to make sure we all had what we NEEDED...the woman who worked hard every day of her life for the good of the whole, not the part.
It occurs to me that maybe I need to become a nursing home patient advocate when my mother is no longer in need of me...when she has crossed beyond the grave to the loved ones who are waiting to welcome her home. Yes, I believe this. It comforts me to know she will be whole again when she makes that journey. Yet, not having her where I am will sorely hurt.
I visited her Saturday. She was in bed, her feet up, now healing, her crochet work in her hands. I sat in her recliner, feet up, researching with my netbook for something I was writing. We didn't talk a lot. When we talk, we speak of the same things over and over again as if it was the first time every time. We were content just being together. I said so. She agreed.
The winter has been long and troublesome. I feel drained to almost empty. I am saddened to think I offended Nancy on Saturday. She and her husband were inside McDonald's. I was in my car in the drive-thru. I wasn't 100 percent sure it was her. I didn't wave. I didn't mean to snub her at all. I am so drained I feel like I'm on 10-second delay. Please, God, don't let it be Alzheimer's. My memory is fine. I just have the slows!
The pace is rising. I have more responsibilities and obligations. I began today to babysit my 3-year-old granddaughter while her mother attends college classes. I want to do this because education is extremely important, and my parents helped me with my children so I could pursue my dreams, too. I have to visit Mom frequently to make sure she's getting the right care, consistently. I have my publicity job for Family Recovery Center that requires time each week. My house needs a thorough cleaning but with the recent changes (two college students are living with us again) I'm not sure where to start. Work schedules, school schedules, my schedule and mealtimes are challenging...and for me to be worth anything I need seven or eight hours of sleep at night, uninterrupted.
Why do I feel the need to share all of this? Because I don't want anyone to think I'm a spoiled, selfish, self-centered, worthless slug! It seems, right now, like the only one who recognizes this is my mother, the woman with an Alzheimered mind. Oh, Hummingbird, please, please, please, don't fly away!
Yet, minute by minute you are.
(c) 2010 Cathy Thomas Brownfield
All rights reserved -- Contact author for permission of use.
Tuesday, January 19, 2010
Thursday, January 14, 2010
Speaking up
There is a fine line between taking care of a loved one in a nursing home and taking care of a loved one in a nursing home. You read that right. You don't want to make the people who work at the nursing home angry so they will take it out on your loved one, but you want your loved one to be taken care of properly, even when they insist that everything was being done but you just couldn't see it until you raised the questions.
"I don't have to tell you the reputation that nursing homes have," I advised the group of staffers who gathered for the quarterly care meeting for my mother. "There is a stigma, and those questions are always in my mind. And I have to believe the reason that doctor who 'typically doesn't come in on a Tuesday evening' came in because of what I said: He uses the nurses as his eyes and prescribes care over the phone. If he wants to take care of my mother he will have to be his own eyes or he is done. God bless nurses, but they aren't doctors. That is his job!"
What I also said several days ago was this, "I can handle anything when I get the truth. I don't handle well at all being lied to. I'm not saying anyone has lied to me. I'm saying it better not happen."
I haven't used my trump cards yet: I have media connections and I know how to use them. I have no qualms at all about calling state in to investigate. I haven't been hiding the fact that I'm a writer. It just never came up. But I've said several times, in the past week, that I am a writer. They might be saying to themselves, "Oh, NOW I know where I've heard her name."
What I know for certain is that my mother literally marched through Hell for her family when she was raising us. She went without--I'm not talking about luxuries here--so the rest of us could have what we NEEDED. She endured a difficult marriage when it would have been much better for her if she would have left it. But as she told me once, "You can't help who you love," meaning that we fall in love and there's not much we can do about it. And when "you make your bed, you have to lie in it" comes to light. My mother--and I'm sure others feel the same about their mothers--deserves the best care we can provide for her.
My family has to be able to trust them to take good care of Mom in our absence, though they told me there is someone from the family there every day of the week, sometimes more than one person shows up on the same day. I'm glad they notice that because they will tend to her care because they never know when one of us is going to walk through that door. There is a reason why I don't let them know when I am going to visit.
Should family members speak up? If you don't develop a relationship with the staff who take care of your loved one what do you have? When you open your loved one's life to a huge "family" at a nursing facility, you have to open yourself to that family, as well. How can your loved one regard the nursing home as "Home" if you don't? Family isn't just what you're born into. It's the circle of human beings that you belong to.
One of my daughters had a "discussion" with a friend. Afterward, she felt like a heel because she had questioned whether this person was truly her friend. I told her, and I meant it, when you have disagreements with someone, the fixing of things--the making up after a disagreement--strengthens the friendship. That's not a bad thing. In fact, that's a doggone good thing! That's when the misunderstandings and misinterpretations are cleared up.
Should you speak up or keep your mouth shut so you don't cause trouble? In my humble opinion, speaking up is a good thing. It doesn't have to be a knock-down, drag-out. It just needs to be clear: I am aware of the stigma of nursing home facilities. I am aware of what is best for my loved one. I am not trying to offend anyone. I'm trying to be fair, and I'm trying to make sure that my loved one--in my case, my mother--is well taken care of because she deserves to be well taken care of and I'm trying to honor those things she made me promise her when she was diagnosed with Alzheimer's nine years ago.
"I know the day is going to come when you will have to put me in a nursing home. It's OK. You do what you have to do. I know I'm going to argue with you, but it's the right thing so you do it. And when I don't know you any more, stop coming to visit me because I will be gone."
Yes, we moved her to a nursing home. Yes, she has argued with us about it. Will I ever stop visiting her? Probably not. Even when she doesn't know me any more I will continue to go if I am able. Even if all I can do is sit in the chair beside her bed and watch her sleep. But I pray, "Please, Lord, be kind to my mother."
(c) 2010 Cathy Thomas Brownfield
All rights reserved -- Contact author for permission of use.
"I don't have to tell you the reputation that nursing homes have," I advised the group of staffers who gathered for the quarterly care meeting for my mother. "There is a stigma, and those questions are always in my mind. And I have to believe the reason that doctor who 'typically doesn't come in on a Tuesday evening' came in because of what I said: He uses the nurses as his eyes and prescribes care over the phone. If he wants to take care of my mother he will have to be his own eyes or he is done. God bless nurses, but they aren't doctors. That is his job!"
What I also said several days ago was this, "I can handle anything when I get the truth. I don't handle well at all being lied to. I'm not saying anyone has lied to me. I'm saying it better not happen."
I haven't used my trump cards yet: I have media connections and I know how to use them. I have no qualms at all about calling state in to investigate. I haven't been hiding the fact that I'm a writer. It just never came up. But I've said several times, in the past week, that I am a writer. They might be saying to themselves, "Oh, NOW I know where I've heard her name."
What I know for certain is that my mother literally marched through Hell for her family when she was raising us. She went without--I'm not talking about luxuries here--so the rest of us could have what we NEEDED. She endured a difficult marriage when it would have been much better for her if she would have left it. But as she told me once, "You can't help who you love," meaning that we fall in love and there's not much we can do about it. And when "you make your bed, you have to lie in it" comes to light. My mother--and I'm sure others feel the same about their mothers--deserves the best care we can provide for her.
My family has to be able to trust them to take good care of Mom in our absence, though they told me there is someone from the family there every day of the week, sometimes more than one person shows up on the same day. I'm glad they notice that because they will tend to her care because they never know when one of us is going to walk through that door. There is a reason why I don't let them know when I am going to visit.
Should family members speak up? If you don't develop a relationship with the staff who take care of your loved one what do you have? When you open your loved one's life to a huge "family" at a nursing facility, you have to open yourself to that family, as well. How can your loved one regard the nursing home as "Home" if you don't? Family isn't just what you're born into. It's the circle of human beings that you belong to.
One of my daughters had a "discussion" with a friend. Afterward, she felt like a heel because she had questioned whether this person was truly her friend. I told her, and I meant it, when you have disagreements with someone, the fixing of things--the making up after a disagreement--strengthens the friendship. That's not a bad thing. In fact, that's a doggone good thing! That's when the misunderstandings and misinterpretations are cleared up.
Should you speak up or keep your mouth shut so you don't cause trouble? In my humble opinion, speaking up is a good thing. It doesn't have to be a knock-down, drag-out. It just needs to be clear: I am aware of the stigma of nursing home facilities. I am aware of what is best for my loved one. I am not trying to offend anyone. I'm trying to be fair, and I'm trying to make sure that my loved one--in my case, my mother--is well taken care of because she deserves to be well taken care of and I'm trying to honor those things she made me promise her when she was diagnosed with Alzheimer's nine years ago.
"I know the day is going to come when you will have to put me in a nursing home. It's OK. You do what you have to do. I know I'm going to argue with you, but it's the right thing so you do it. And when I don't know you any more, stop coming to visit me because I will be gone."
Yes, we moved her to a nursing home. Yes, she has argued with us about it. Will I ever stop visiting her? Probably not. Even when she doesn't know me any more I will continue to go if I am able. Even if all I can do is sit in the chair beside her bed and watch her sleep. But I pray, "Please, Lord, be kind to my mother."
(c) 2010 Cathy Thomas Brownfield
All rights reserved -- Contact author for permission of use.
Tuesday, January 5, 2010
Weak or lonely?
I walked into the nursing home and stopped at the nurses' station to see how Mom is doing. The nurse lowered her voice and said, "She's so weak. I'm worried about her." Oh. I thought she was doing better since she was released from the hospital. I went into her room. She was sleeping. I took off my coat and set it aside, then went to her and gently touched her with a hug.
We talked. It's the same conversation over and over again for me, but each time it is fresh and new for her. I don't mind. At least she is talking to me. And she knows who I am. The longer we talk the more she perks up. There is a small photo album on top of the mini fridge we keep stocked with bottled water and green tea. I don't think she remembers it's there any more than she remembers the box of candy I gave her at Christmastime along with the other gifts we gave her. So I got down the photo album and we went through the pictures. She told me who was in them and I remembered for both of us the occasions for each photograph. She enjoyed that conversation so much. By the time I had to leave, she had perked up a lot. Yes, the gout still had control of her foot so she couldn't put weight on it, so she couldn't get out of bed. I could see, though, that she wasn't weak as the nurse thought. But the nurse doesn't know my mother the way I do, even if Mom has lived there for six months.
Yesterday I went to see her again. I stepped into her room but she wasn't in bed or the chair. I went to the nurses' station. "Where are you hiding my mother?" I teased.
"She's in the dining room playing Yahtzee," someone answered. "We aren't hiding her."
I jaunted to the dining room, set my coat and purse on a chair and went over to hug her. As she always does when I suddenly appear out of nowhere, her eyes lit up and she said, "Hello!" Then she introduced me to the other players. "There's no denying that she's your daughter," they laughed. (I do look a lot like my mother.)
She was in a wheelchair. (Nobody had mentioned that to me. But they probably didn't think to tell me that.) I was glad to see she was resuming her place at the games. She loves to play Yahtzee and Bingo.
"She's a writer," Mom informed her friends and the assistant activities director.
"I didn't know that," Mary said.
"I was so impressed with the Yahtzee players I wrote about them in one of my stories. I call them the Hotsy Yahtzee Ladies."
Mary laughed.
It's true. They are fun to sit with at the Yahtzee table. And I am so pleased to see that Mom has friends. Dad never allowed her to have friends. Well, that's the way I understood things. I guess I could be wrong.
I am spread all over the place, trying to take care of my husband and home, helping my children with childcare when they need someone to babysit their children, writing, writing my Family Recovery Center articles, cooking, shopping...But I am trying to get to the nursing home more often. A couple of times a week doesn't seem to be enough. I wonder if that is considered frequent visiting, though. At the Social Security Administration they asked if we visit more than once or twice a month. What??? There are three of us siblings. If each of us is there a couple of times a week, there's someone checking on her welfare just about every day! The rep seemed surprised.
Mom doesn't remember a minute ago, these days. But she does remember who we are. Sometimes she has a little trouble swallowing. That's a little scary. She's still a fighter, though. Still mentoring her children and grandchildren, God bless her!
I pray every day, "Please, Father God, be kind to my Mother."
(c) 2010 Cathy Thomas Brownfield
All rights reserved -- Please contact author for reprint authorization
We talked. It's the same conversation over and over again for me, but each time it is fresh and new for her. I don't mind. At least she is talking to me. And she knows who I am. The longer we talk the more she perks up. There is a small photo album on top of the mini fridge we keep stocked with bottled water and green tea. I don't think she remembers it's there any more than she remembers the box of candy I gave her at Christmastime along with the other gifts we gave her. So I got down the photo album and we went through the pictures. She told me who was in them and I remembered for both of us the occasions for each photograph. She enjoyed that conversation so much. By the time I had to leave, she had perked up a lot. Yes, the gout still had control of her foot so she couldn't put weight on it, so she couldn't get out of bed. I could see, though, that she wasn't weak as the nurse thought. But the nurse doesn't know my mother the way I do, even if Mom has lived there for six months.
Yesterday I went to see her again. I stepped into her room but she wasn't in bed or the chair. I went to the nurses' station. "Where are you hiding my mother?" I teased.
"She's in the dining room playing Yahtzee," someone answered. "We aren't hiding her."
I jaunted to the dining room, set my coat and purse on a chair and went over to hug her. As she always does when I suddenly appear out of nowhere, her eyes lit up and she said, "Hello!" Then she introduced me to the other players. "There's no denying that she's your daughter," they laughed. (I do look a lot like my mother.)
She was in a wheelchair. (Nobody had mentioned that to me. But they probably didn't think to tell me that.) I was glad to see she was resuming her place at the games. She loves to play Yahtzee and Bingo.
"She's a writer," Mom informed her friends and the assistant activities director.
"I didn't know that," Mary said.
"I was so impressed with the Yahtzee players I wrote about them in one of my stories. I call them the Hotsy Yahtzee Ladies."
Mary laughed.
It's true. They are fun to sit with at the Yahtzee table. And I am so pleased to see that Mom has friends. Dad never allowed her to have friends. Well, that's the way I understood things. I guess I could be wrong.
I am spread all over the place, trying to take care of my husband and home, helping my children with childcare when they need someone to babysit their children, writing, writing my Family Recovery Center articles, cooking, shopping...But I am trying to get to the nursing home more often. A couple of times a week doesn't seem to be enough. I wonder if that is considered frequent visiting, though. At the Social Security Administration they asked if we visit more than once or twice a month. What??? There are three of us siblings. If each of us is there a couple of times a week, there's someone checking on her welfare just about every day! The rep seemed surprised.
Mom doesn't remember a minute ago, these days. But she does remember who we are. Sometimes she has a little trouble swallowing. That's a little scary. She's still a fighter, though. Still mentoring her children and grandchildren, God bless her!
I pray every day, "Please, Father God, be kind to my Mother."
(c) 2010 Cathy Thomas Brownfield
All rights reserved -- Please contact author for reprint authorization
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