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When you are caring for an aging parent, you learn a lot about loss. Their losses are too many to count, but your losses are huge also. As a daughter, I will forever long for my mom. Even though my mom and I didn’t have an ideal relationship, when I was growing up (who does?), she is and will always be…my mom. Now that Sam, my stepfather, has been dead for over 3 years, and my mom’s health and mental status seems to be fading rapidly, I am already feeling like an orphan. Even as adults, as long as our parents are alive, we feel secure in the knowledge that, if we need them, they are there. There is some sense of security and protection in that belief.

The truth is, they need us now, more and more. The roles have changed forever, and there is no turning back. The parent has become the child, and the child has become the parent. But sometimes in our memories, we retreat to a safer time and place, when all the responsibility of the world was not on our shoulders.

If middle-age (bordering on older middle age) is not scary enough, suddenly we are responsible for everyone. High school and college age kids, parents with failing health and confusion, and spouses who also need some attention and time from us. We begin to feel squeezed  by the constancy of it all, and a day spent in bed seems like a storybook option-something we do not allow ourselves very often, because there is much to be done, and we certainly believe that it all has to be done by us.

One day I realized that if something happened to me, the whole puzzle would fall apart. Everything would break down, if I did. (Talk about pressure.) But of course, for me to break down would be selfish, and self-centered, wouldn’t it? How scary have things gotten when a breakdown sounds like a way of escape? Let’s don’t go there…

I got a call today from a social worker at the nursing home where my mom is receiving rehab. We are scheduled for yet another of their famous “care plan” meetings, where everyone sits around a large table, and feels intimidated by the people staring back at us. Their decisions are sometimes made with abject callousness, because after all-it isn’t their  parent, and it isn’t their problem. The assessments are given, and the cold hard facts about how long the “inmate” does or doesn’t have to continue with therapy are calculated. (I have to wonder how much of that is based on what financial gain (or not) they will stand to receive.)

Last time, our meeting was very positive. The occupational therapist, the physical therapist, and the dietician all had a report about my mom. She passed with flying colors, except for a protein nutritional deficiency, and a problem with keeping a leg brace on, (that was way too big.) So big that it kept sliding off her leg. She was told at that time, that if she received a report from the doctor, that the leg and foot were mending, and that she no longer needed the leg brace and orthopedic shoe, then they could keep her about a week longer, for additional instruction in regaining a more normal gait, and a little help with balance issues. She would be home in a week or so–two at the very most.

But then that very  weekend, she fell on her way to the bathroom one night, and broke her hip. I got the fateful call at 4:30 in the morning, and things changed dramatically.

Now they are saying that she is having some mental issues-she “goes in and out” according to the nurse’s assistants. While I know that previously (before these falls), she had some memory loss and confusion, it was minor and manageable. (Now I am not so sure.) I live in fear daily of what I will find when I go to visit. (Some days she is as clear as a bell, and others she isn’t.)

I am sure that I have been in denial to some degree. I have been sure that it was the anesthesia, or the trauma of the surgery, or the morphine, or the daily cocktail and combination of drugs that she takes, with new culprits thrown into the mix lately. There is also the different surroundings, and the complete change in her daily routine to consider. (And the cutting of her Oxycontin dosage in half, while adding Loritab.) Maybe it’s denial, or maybe it’s hanging onto a hope that keeps me going. I am not sure anymore if she will go home, or if she should. I know that will be the plan, but everything has changed now…everything. I no longer feel that she is walking on the precarious tightrope that she once was. I feel that she has taken an almost fatal fall, and there was no safety net. But she still wants to get on the wire again. (I guess we all would. Because not to, would mean the loss of everything.)

Of course, her safety is of supreme importance, but her happiness is no minor issue. We can house people, keep them alive, and imprison them in homes, and for the most part they will be safer (though not completely so, for my mom broke her hip, while in the nursing home.) There are no rails on the bed there, and sometimes in her confusion (combined with her stubbornness) she tries to get up, and threatens to walk to the bathroom, forgetting that she can’t right now, and not realizing that she is not likely to survive one more fall. (Neither am I for that matter.)

I am the one who listened to her scream for 6 hours in agony in the ER. I am the one who saw her throw up in the elevator from pain, morphine and the motion of the gurney. I am the one who listened intently, while the anesthesiologists insisted on recounting in detail (in her presence) why she may not survive her surgery, and all the complications that could occur. I am the one who had to listen to her question why there were bugs on the wall, as she hallucinated, on her first night back in the nursing home. Was it the anesthesia? The morphine? The trauma of her injury, pain, and surgery? I don’t know…but I do know that it scared the heck out of me. She yelled at everyone in her frustration and confusion, and accused me of not coming when she called. But it wasn’t that that brought me to tears.

It was this Sunday, when she wet her clothing, and thought that her roommate had done it. It was when I had to listen to the CNA tell me that she was getting worse mentally, and that they would once again have the psychiatrist examine her on Wednesday. It was the grieving for all that she has lost, and all that I have. It was just because.

Now I try to balance protecting her, with keeping her informed about her care. We have been told that at this point, she is receiving coverage from her Medicare, but because of the length of her stay, her supplemental insurance (Blue Cross Blue Shield) is no longer in effect, and that she is incurring a daily personal cost of $128.00 dollars a day. (I nearly fell out of bed the day I got that message.) But I decided not to tell her for now. It could only make her feel worse, and there is no way we could pay that. No way. The only asset she has is her house, and they can’t take the homestead. You can’t squeeze blood from a turnip.

So I’m wondering how all these factors will affect her “care plan” meeting. Right now she can’t even take a step. All of her therapy is done from her wheelchair or another chair, and she is not even on her feet at this point. (There is no way she can go home at this time.) But I never know what they will say or do next. I never thought they would send her home from the hospital after she had pneumonia either. She had not even come near to finishing her therapy for her broken leg and foot, and the doctor told her she could go home. (Not back to the nursing home…home to her house.) How ridiculous was that? The physical therapist said that she was sure to fall and hurt herself badly, if she put full weight on her broken leg. We had to have an all out war with her, to get her to consent to go back. The doctor said that as long as she was considered competent, he could not force her to go back for the therapy. (I felt like saying-then you take her home, and be responsible for what happens if she falls.) Finally, she agreed to go back, and finish her physical therapy, and the rest is history. A few days before being released (rightfully), she fell and broke her hip. And the beat goes on…

Tonight Rob and I went to her house, and cleaned out the refrigerator. (You don’t want to know the “science projects” that awaited us, after her 2 month absence.) It was one of the things that got lost in the urgency of the crisis of the moment. We also got rid of the flour in the pantry, old cereal, and stale crackers and cookies.

Somehow, it made me feel sad and sick. Just being there-in her house-without her, seemed so wrong. I smelled her scent when I walked in her bedroom. I saw the family room where she watched TV, and it’s dark, and all the medicine bottles have been abandoned, along with her insulin pens and charts.

I cried on the way home. They were inner tears this time, where you feel the pain in your heart, but they don’t run down your face. I know that she will probably return to her home, but I don’t know how much longer she can stay there, or how much longer I can carry the weight of it all.  And it is the not knowing, that adds to the heartache. But as long as I’m alive, she will never be alone, and I’ll stand by her-protecting and comforting her…

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2 Comments

  1. JUST A SUGGESTION FOR YOU . WOULD IT NOT MAKE THINGS EASIER FOR YOU IF YOU TOOK HER TO YOUR HOUSE. AND GOT HOME THERAPY FOR HER THERE ARE PROGRAMS THAT PROVIDE THAT CARE AND MEDICARE WILL PAY FOR A CERTAIN AMOUNT OF IT. YOU ARE IN OUR PRAYERS. LET US KNOW IF WE CAN DO ANYTHING. YOU MAY NEED TO SELL HER HOUSE TO GET THE MONEY NEEDED FOR HER CARE. ALONG WITH ALL THE ITEMS IN IT . ALL OF SAMS CLOCK TOOLS AND SAWS AND THINGS. WOULD SURELY HELP A LOT. I KNOW HERE IN GA THERE CAN BE NO HOUSE OWNERSHIP FOR A NURSING HOME. WE HAD TO TAKE OUR PARENTS HOME OUT OF THEIR NAMES AND SELL IT BEFORE MY DAD COULD BE EXCEPTED INTO THE NURSING HOME THERE. WE SOLD IT FOR 1 DOLLAR . ALL THEY ASK IS THAT THERE IS NO PROPERTY BELONGING TO HIM. MY SISTER BOUGHT IT TO KEEP FOR HIM . MAYBE ROB COULD DO SOME RESEARCH INTO IT.

  2. Peggy:I am not able to take care of her at home. I have no help! Right now she can’t even take a step, and our home is a logistical nightmare for her. Our kitchen is upstairs.The bathroom is too far away from the spare bedroom. I am not physically able to do it. I have a torn rotator cuff that still hurts. I can’t lift her. I cannot. Yes, you can get a very little bit of home physical therapy, but home care is very short lived, and no one can afford private care at home. They will not provide you with care day in and day out. No way. Everyone always says there is home care available, but when you go home from the nursing home, the home health aides are only available for a couple of weeks. People make it sound so easy, but it isn’t.

    Even the nursing home CNAs are having trouble doing all the lifting and assisting that it requires.
    I am not able to do it, and I have accepted that.

    I’m sorry, but sometimes it makes me angry when other people seem to have all the answers, but they aren’t here dealing with it day in and day out.

    Everyone has to come to terms with what they can and cannot do in a situation, and there is no shame in that. I am not physically able to keep her at home, or emotionally able at this point. I have cared for her for 3 years to the best of my ability, and have been glad to do it. I love her with all my heart. My own health is failing steadily, and I am totally exhausted.

    P.S. I should add that our goal is for her to live independently for as long as possible. We are working toward that goal.

    Thanks for your comment.

    Love, Lonnette


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