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After the meeting with the social worker and others (occupational therapist, physical therapist, and Medicare coordinator), my husband, my brother, and I talked about the financial aspects of each choice. My brother was just in shock, I believe–as I had been also, when I first heard how they evaluated my mom’s condition. (They said that every day they have to start over with her. She does not remember the safety instructions from the day before, and there is no new learning.) She has very unsafe transfers from her wheelchair to the bed, or toilet, etc. She forgets to lock her breaks, and they have caught her walking without using her walker or wheelchair, and she resents being told to use them. She cannot grasp what one more fall would mean to her, and in addition to being very stubborn, now she just doesn’t remember the instructions. Everyone feels that her risks of falling again are very, very high…

Just as we were finishing our talk, one of the CNAs wheeled my mom into the dining room, and we were busted. We had to try to explain what all three of us were doing at the nursing home in the middle of the day. (She seemed delighted to see us though.)

I packed that night, and all day the next day, to prepare for my local get away. As I said in the last post, it was a change of scene, and little else this time, as all the problems jumped in my suitcase when I wasn’t looking.

I soon received an email from my brother saying that he wanted my mom to go home. He wondered why he couldn’t move in (with his teenage son) and hire caregivers for the time he was at work. On the surface this seems like a good idea, but knowing my mom like I do, I wasn’t sure it was going to be best for her. She is a private person, who needs time to herself, and going home will never be what it was, with someone staring at her 24/7. ( They don’t even do that at the nursing home.) And the cost of hiring caregivers for every moment my brother is not there, would soon get sky high. Plus the strain of two more people in the house would add to her burdens, and lack of privacy. She has done this before when my brother, his ex-wife, and his son lived with her for awhile after my dad’s death, and it was very difficult. It is always difficult combining living arrangements with extended family.

I am sure that it would also be extremely difficult for my brother, who has to go to work every day. Since my mom is incontinent a lot now, (along with the mental issues) her care needs are far different than they once were.

But more than all those reasons, I feel going home is more dangerous than the other choices, because her bedroom is way down the hall from her kitchen and family room, and I am afraid that she will fall trying to navigate it, and that whoever is supposed to look after her, would be watching TV in the family room, and not know that my mom was wandering down the hall (probably without her walker, etc.) She would also probably insist on trying to go out the front door to get the mail (which she has fallen out of before.) And she has also fallen into the street one day, and could not get up. By God’s grace, a lady in the neighborhood (who just “happen” to work in a nursing facility) saw her, and helped her to her feet. The back door has a ramp, but she staggers down it, and even it isn’t safe for  her. Of course, it would be best if she wouldn’t try these things, but just try convincing her of that!

In fact, so many things that she used to do at home would not be safe anymore, after a broken leg, foot, and hip. Even bathing is a huge hazard. (At the nursing home, she is given a shower in a special shower chair.) Cooking would even be perilous, given her present mental state, and I’m sure she would want to prepare meals, as she once did for my brother at lunchtime. The housework had long ago overwhelmed her, and though I tried to help her all that I could, I was pretty worn out from all the other caregiving necessities, and from trying to keep my own house above water. Seems like I’m never at home to clean it–between all the errands, doctor’s appointments, shopping, etc.  We would usually both be exhausted at the end of our ventures into the world. Keeping all her medicines straight, prescription drop-offs and pickups, and supplemental grocery trips etc., kept me busy for sure. Now we are doing all her laundry as well (and lately that has been anything but pleasant, due to the incontinence.)

So after talking again with my brother, we all agreed to do what was safest and best for Betty. We told my brother that we would not oppose him on his decision to take her home, but that we could not support it. We really feel that she will not be safe (or happy) under the conditions, and it will be much more than he had bargained for. I asked him if he wanted us to tell my mom that he was going to move in. He said no, and we agreed that we should not commit to that, but rather just discuss possible options with her.  (I will finally share our conversation with her in the next post.)

Unfortunately, my mom’s Ortho doctor (previously referred to as “Ortho Shrew”) threw a curve at all of us. When I took my mom for her 12 week check up, the Ortho doctor just blurted out (without ever consulting the nursing home, or me), “When are they going to release you from the nursing home? I think with a couple more weeks of therapy, you’ll be ready to go home.” Then she turned to me, and said, “She’ll be with you, right?”

 (My mind froze, and I felt like I was going to pass out. This could not be happening.) I shook my head in dismay and shock, and then my mother told her (as lucid as could be), “I have my own house. My son comes for lunch most days on his work break, and I fix him something to eat, and he does things for me around the house.” And as almost an afterthought, she added, “And of course, Lonnette is around to do all she can.” (She was trying to exaggerate the amount of close supervision that she had.)

“You’ve got it made”, the doctor said, and then added, “Of course, I don’t make that decision about when you can go home-the nursing home does.” (Then why did she have to blurt out that my mom could soon go home, without checking out the situation? When dealing with elderly parents, it seems to me that doctors should allow a few minutes of the visit for consultation (alone) with the caregiver. There are often sensitive situations that you would prefer not to discuss in front of your loved one, such as declining mental status, etc.) But they always ask the elderly person the questions, and so often the answers that my mom gives now are not correct. There should really be a better system.

She had also just told my mom that she could go to full weight-bearing, meaning that she could put equal weight on both legs, and could now use her walker in the room, and to get around. (Until now, she was using her walker (accompanied) in the halls for therapy, but was not allowed to use it alone in her room.) She was supposed to be pushing her call button for assistance (though for the bathroom they rarely got there in time, and she would try to get there herself any way that she could.)

The doctor headed for the door, leaving our world in total chaos. All I could do was follow right behind her, as the nurse got my mom off the table and into her wheelchair. I was fuming, but tried to contain my anger. And I was only standing 3 feet away from where my mom was, behind a closed door, so I could not talk very loudly.

“Dr.–, I know you couldn’t tell it from this conversation, but since the hip surgery, my mom’s mental decline has been astounding. The nursing home is telling us that she cannot go home to live alone anymore, and that they even doubt that she will qualify for assisted living, due to the mental issues, incontinence, inability to follow instructions, etc.”

She didn’t even look up from her writing. “Oh…I didn’t know that,” was all she answered.

“Talk about heartbreak,” I added, “She thinks she’s going home any day now, to live like she did, and she can’t. Are we coming back to see you again?”, I asked.

“No-I’m releasing her, unless there are further problems. Call me if you need me.”

And with that I was dismissed. Shaking all over at the stupidity of it all, I turned to wheel my mom to the hospital cafeteria across the street. But she had one more question for the doctor.

“When can I just walk?” she asked the doctor.

“You can walk now”, she answered.

“No, I mean do you foresee a time that I can walk without the walker?” she pushed.

The nurse, the doctor, and I all answered (at the same time) that it was safest to use the walker always.

The rest of my life?“, she squealed in horror. (We all shook our heads “affirmative” in unison.) Why is this so hard to grasp after a broken foot, leg, and hip?

I congratulated her on her good report, as I pushed her along. The doctor had said that there was lots of new bone growth in the hip area, and the fracture was bearly visible any more.

As we entered the cafeteria, we realized (with sadness) that it was the mid-afternoon slump time, when the cafe was closed, and only the machines were available. (Unfortunately, the hospital was the only eating place near the nursing home, that was close enough to access when I was pushing her in the wheelchair. We had just walked from the nursing home to the clinic across the street.) I got her some coffee and a sausage and egg biscuit, and she gobbled it down like a desert island survivor. The food at the nursing home is atrocious most of the time, and anything away from there tastes great to her. I often try to bring in food, whenever I can.

I was worried as I pushed her back to the nursing home. Now she thought she was going home for sure, and her heartbreak, after being told that by the doctor would be even worse than it would have been. The doctor had not questioned her living on her own when it was mentioned, (because she did not have all the information needed to assess her present situation.) In fact, the doctor had called me at home, before my mom’s hip surgery, and told me that she “may never be the same.” She explained that many people this age experience dementia after the anesthesia, and the trauma of surgery. But ignoring that today, she just jumped into talking about her going home, without checking on her mental status. And she said she could go to full weight-bearing with her walker, without even watching her walk. (What’s wrong with this picture???)

We were just getting ready to somehow break the news about the nursing home assessment to her, and now this. The doctor had screwed up everything, and left us with a terrible predicament. How would we ever convince her of the seriousness of her condition now? (Keep in mind that when she experiences some of her hallucinations and strange talk, she usually doesn’t remember that it happened. Or she is convinced that what she saw (or did) really did happen, and that we are all crazy.)

Just when I think my heart is as shattered as it can be, it breaks in another place…

Please see other articles that I have written here:

http://www.associatedcontent.com/user/109497/lonnette_harrell.html

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5 Comments

  1. Hey Lonnette,

    Although my mom did not have the same concerns in her last days, as your mom, once she was incapable of taking care of herself, and was on her last stay in the hospital, things took on a different feeling for me. Odd, and somehow more full than I thought I could handle, there was also an emptiness with the loss of my mom’s abilities. I remember it well. I remember the utter sense of vacancy – both mine and Mom’s – and the desperate sense of my inadequacy. Not that I wasn’t up to the task, but that I was no longer in control – never was, really.

    I know you’re exhausted, and I know you’ll keep going. That’s what we do – we’re daughters.

    I prayed a lot when my mom was in her final days, and whether your mom is close to anything you might call “final” or not, I know you are praying. Nothing is final, by the way. Life keeps moving – it just has different phases, and we recognize them in more obvious ways when we hurt. Prayer works. It always has, it always will.

    Take care of you,
    Linda

  2. Linda: Thank you for coming along and reminding me that I am not alone in this overwhelming world. Somehow knowing that others have survived the sorrows of life, gives me courage, when my strength is gone. Yes, I will keep going by God’s grace.

    Who of us would change places with the other? So much pain in this world, but so much joy as well. There is such a bittersweet communion between broken hearts.

    Thanks for reminding me to pray, and to keep praying. Sometimes just living is a prayer of faith, isn’t it? Putting one foot in front of the other–taking one breath at a time.

    I think of you often my friend-

    Hugs-Lonnette

  3. I, too, have gone through this same story with my mother. I am the middle of 7 children and a RN. That doesn’t matter when it comes to what is needed to care for a loved one in the home. I struggled with all the safety device installation, keeping an eye on her 24/7, etc. I have done a lot of work online to help others who are facing the care of a dependent person in their home or must be ready for visits. Whether they stay in a care center, or move in with you, you must be prepared. Mom used to cry a lot in the nursing home. That is the reason I quit my job and moved her into my home. She hated the food, care, and surroundings. She was so lonely, even though I came, called, and asked others to do the same. She would forget just as soon as you left or hung up. The nicest part of having mom home with me was that she was no longer lonely, hungry for good food, or wandering about feeling like she was lost. She died in my arms smiling at me. Please tell your friends to take a look at all the work I have done to help others at http://www.askmyrn.com. I have gathered all the items that are needed to care for another in one spot. I am also online from 8 to 4 M-F to talk to people and help them get what they need including services. Being an emergency RN for decades has taught me how to point others in the right direction so they don’t waste time looking in the wrong places and getting frustrated.
    God Bless you and Peace to all in their challenges to be good to others.
    Jan, RN

  4. Jan: Thanks so much for your comments and all the help you are providing others. I will check out your site, and stay in touch. I need all the help and advice I can get. Thanks for stopping by! Lonnette

  5. Lonnette,
    Please let me know what I need to do to make the site better. You are special in that you are right in the middle of what I am trying to support. Your insight is so valuable to me. Watch for more videos that I am producing and placing on the site. They are one or two minutes on products to help people get exactly what they need for their loved one. I am a little shy about putting myself in the videos, silly, right? But, I have stood at the bedside bare faced for decades and instructed patients and families, so sitting in front of a camera should not be so hard…but it is.
    I need to know from you your feelings on what you as a user want to know about products. What questions do you want answered.
    Much love,
    Jan, RN


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