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Tomorrow– me, my brother, and my husband, are meeting with the social worker at the nursing home to discuss my mom’s health, and a plan for her future care. After we have met as a family, then on another day, my mom will meet with all of us. (That is the day I dread the most.)

I have known for a couple of weeks now, that they believe the only way she can survive independently, is to be in assisted living. The shock of that has had a little time to sink in, but I awake every day with a sick feeling in my stomach. I think of my mom, and how sad this whole scenario is, and I feel nauseated. (She thinks she is going home any day now, and that totally breaks my heart.) I feel like a knife is in my chest. She has mentioned that when the nurses (or CNAs) tell her something she said (that didn’t make sense), she denies it. She now thinks that they are all the enemy. She is so confused that she doesn’t remember the times when she has said troubling things, that let us know how bad things have gotten with her mental state.

Once she woke up in the evening, and thought it was morning-(not all that unusual given that she is away from home and familiar surroundings), but then she told the male nurse that she had promised her roommate that she would take her to dinner that night, and she realized that she did not have a car there. She was really disappointed that they couldn’t go, and said that they would have to make plans for another night. (My mother hasn’t driven in over 4 years, though she does still have a car that sits in her driveway.) Because she is on certain medications-particularly Oxycontin, she made the decision not to drive, though at times she has threatened to try again. She called me that night, and explained what had happened, and at first I thought her blood sugar had gone low. However, the male nurse got on the phone, and told me that he had just checked it, and it was high. He asked if I could come and “re-orient” her. I did, and she said that if we told anyone about it, she would kill us. (She was embarrassed, and we played it down, and tried to talk about other things.)

Another day, she told me (and the staff) that she had spent the night at a nurse’s house, and that the nurse had served breakfast, before taking a nap. (It turns out that this particular nurse lives in Baker-a long, long drive, and of course, it couldn’t have happened.) My mom was very distraught when they wouldn’t believe her, and she later refused to take her shower, because she said that she had already taken a shower earlier, at the nurse’s house. When the CNA tried to tell her that it couldn’t have happened, she said, “Are you saying that I’m lying?” Bless her heart, this poor CNA never knows how to answer some of these remarks. My mom truly believes that these things did happen, and she gets so frustrated when they won’t believe her. (These are symptoms that we have never experienced with her before.)

One day recently, she called me to say, “We’re still here at this “Wildwood” place…” And while I was speaking to her, they brought her dinner tray to the room, because she had slept too late to go to the dining hall that night. She asked, “Will the others be fed also?” They told her that they would, and she then told me, “The others will be fed too.” I told her that was good, but my heart was breaking, because she has been there 3 months now, and it was as if for that moment, she did not know the procedures, and had never eaten there. It makes my head spin at times, because I never know which person I’ll find when I visit, or talk with her. Sometimes she is completely lucid, and I try to talk myself into thinking, “See…it’s not so bad.” (It seems to be worse after she has been sleeping.)

But then something else will happen, and I will have to face the reality of her situation again. Since she used to give herself insulin shots 4 times a day, and take Oxycontin twice a day, and many other medicines, it is obvious that she will not be able to safely administer her medicines anymore, and both the Oxy and the insulin can be life and death situations, if not taken as prescribed.

She has also become incontinent a great deal, and is very distressed about this, as we all would be. She has had a couple of UTIs (which can contribute to incontinence), and recently went through a whole course of Cipro, and then was still found to have the infection. (This happened to me also, when I took 5 rounds without being healed. Finally probiotics did the job.) The medicine upsets her stomach, and they started her on it again (for the second time) and she told me that she refused it the other evening. Whether she will take it again or not is anybody’s bet. We are also concerned about Clostridium Difficile from too many antibiotics. She has had it before, and it nearly killed her. So what to do? I’m all out of answers…

For those who have not followed the blog, my own health is such that I cannot give her the amount of care she now needs. She has been getting rehab for a broken right foot, left leg, and a broken right hip. (She broke her hip, and had to have surgery, while she was a temporary resident of the nursing home, receiving rehab for the other injuries.)

My dad died 3 years ago, and I have been her primary caregiver for those years. We have been constant companions, and I took her to all her doctor appointments, errands, etc. But the care she requires now is more than I am physically able to give, and I have had to come to terms with that. My emotional state is not that great either, as all of this has devastated me.

Her mental decline has been dramatic since her hip surgery, and I have heard that anesthesia, at this age, can cause mental problems that can be lasting. The nurses and social workers have told us that sometimes in 6 months or so, some of the confusion goes away, and sometimes it doesn’t.

My mom was already experiencing memory loss and some confusion, but it would be considered minor compared with her mental state now. She could not tolerate Aricept (an Alzheimer’s drug) but was able to handle Namenda very well, but the insurance company would not approve the Namenda. They said that the diagnosis of “Mild Alzheimer’s” was not sufficient for approval. This is so infuriating, as all the advertising says that these drugs should be taken early, to slow down the progression of the symptoms of dementia. But I guess the insurance companies want you to be fully out of your mind before approval. Once you are that far along, they are not as effective. What sense does that make? Since when did insurance companies have a medical degree? Since when do they know more than your physician? It makes the patient (and caregivers) feel hopeless.

So tomorrow, I guess they will be telling all of us what they suggest. Just when I was reluctantly accepting that my mom could not return to her home, and getting used to the idea of assisted living, I ran into the social worker one evening, and she told me that my mom would probably not pass the assessment for assisted living at this point. (I agreed at that time (about a week ago) that her physical limitations were still quite worrisome, and that I was afraid she would fall again, as her transfers from her wheelchair to her bed, or to the toilet, were still very unsafe.) She often forgets to lock the brakes on the wheelchair, and many times forgets that she cannot just get up from the chair and walk. Both the family and staff have been concerned every moment that she would fall again. Mentally, she can’t seem to grasp the instructions as to what is needed for safety, and they tell me that they have to start over every day with her, as she can’t remember the instructions from the day before, and doesn’t understand why she can’t just get up and walk around the room.

So, until recently, my greatest fear was that she would have to go into assisted living, but for a couple of weeks now, my greatest fear has been that she wouldn’t even qualify for that. I want her to have her own bedroom and bath so much. She is a private person (as I am), and is so frustrated having to be in the room with different people all the time. It would certainly drive me wild also, due to the lack of privacy.

I know that the risk of her falling again is very great, and that she will probably fail to use her walker, and wheelchair like she should. She used to refuse to use her walker at home, because she was stubborn about it, but now mostly, she just forgets what she should do, (though at times she is still very stubborn.) But I also know that is something that I cannot have control over.

The reason they met with us before, is that the 100% Medicare coverage has run out–the supplemental coverage was over a while back, so we have accrued a daily charge of somewhere around $125.00 or so per day, for several weeks now. They say that if she still needs to stay at the nursing facility in order to receive more therapy (which they definitely  think she will benefit from) then Medicare B will kick in to pay for less therapy (3x per week instead of 5), but that won’t help with the cost of the facility. Actually, different people there have told us different things, and it is rather mixed up at the moment, and quite confusing. (She would also be able to receive therapy 3x a week at the assisted living apartment, if she passed their assessment.) They have different levels of care, but once you get past the second level, the cost becomes prohibitive. It is so discouraging that money becomes the prime consideration in all these things. (My mom’s only asset is her house, and she receives very little Social Security, and a small retirement payment from working for the government for so many years.) She does not have very much monthly income at all, and the cost of assisted living is astronomical, and every “extra” that is added raises the monthly rate considerably.

They would check on her every 2 hours or so, and give her the necessary medications. She could also have supervision getting in and out of the shower, if necessary, and some other benefits. Will it be enough? I don’t know.

But tomorrow will likely be another painful meeting, and I wonder how my brother will take it? Again, I don’t know. I don’t know how I’ll take it, except to say, how much more can a heart break? It’s raining…I’m drowning…Lord, teach me to stand in the rain…

Please see other articles that I have written here:

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

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One Comment

  1. Lonnie , hope all is at least bearable with you.I am worried about you , haven’t heard from you. Please just write me a short note when you get a second please. I keep you in my thoughts & prayers daily.
    Strength, love, hugs ,
    Sandy


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