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Did you think I was never going to write again? I just needed a break, though if the truth be told, I didn’t actually get it. My time away wasn’t time away at all. it was filled with continual crisis calls regarding my mom, and little (if any) sleep because of the stress. It was not a successful get-away. It seems that troubles will sometimes find you, no matter where you roam.

But if nothing else, it was a change of scene. I visited a local motel where I can sleep, and stayed for 6 nights. I managed to stay away from the nursing home for all but one day (which is no small miracle for me.)  I generally go every other day, if not every day.  However, I did get lots of calls from the staff regarding various concerns. Rob and Tony visited her during that time, as that is the only break I’ve gotten from the situation since mid June.

When I last wrote, my brother, my husband and I attended a family meeting at the nursing home about the future plans for my mom. For those just starting to read my blog, in June of this year, she fell and broke her right foot and her left leg. She did not require surgery for those injuries, but needed a great deal of therapy. Just when she concluded her therapy, and was about to go home, she fell and broke her hip.

The hip injury did require surgery, and the decline in my mom’s health has been remarkable since that time. The anesthesia caused initial mental problems, but we were told even before the surgery that my mom “might never be the same.” Apparently, for anyone over 50 (yes 50) anesthesia can pose numerous risks. It stays in the system, and does its dirty work for a long, long time. In fact, some of the effects can be permanent. I remember the first night my mom was brought back to the nursing home, after being released from the hospital, she kept seeing bugs on the wall, and was greatly agitated. The cognitive issues subsided a little, but then returned. There are many times when she is completely lucid, and others when she is anything but.

Two that stand out, are the time that she told her nursing assistants that she didn’t need a shower, because she had spent the night at a nurse’s home, and gotten her shower there (as well as her breakfast), and the time very recently, when she stopped her normal conversation with a nurse, and abruptly asked how those babies got up on her cabinet shelf, and how were they able to stay up there.

The timing of these type of events is enough to make your head spend, because everything will seem totally normal. Conversations will be typical, and then suddenly you enter the Twilight Zone. It is very startling, and extremely heartbreaking.

At any rate, we have reached the place where my mom’s Medicare has pretty much run out. This leaves us with the expense of about $200 per day for her room in the nursing home.. Medicare B has taken up the cost of the therapy only. The 26th was the cutoff date. Here is our dilemma: She does not presently qualify for Assisted Living. There are certain criteria that have to be met. The nursing home does their assessment, and the assisted living facility will also do one. Presently, her rate of incontinence is a huge problem. The assisted living will accept some incontinence, but if the accidents are too frequent, and the clothes and bedding are undetected for too long, it becomes a problem they can’t tolerate. She also needs to be able to follow and adhere to instructions for her safety, and that means using her walker and/or wheelchair properly, and at all times. (She is presently unable to recall that she needs to do these things, and often tries to stand up and walk without the use of either.)  She is so shaky on her feet at the moment, that this poses a tremendous risk. In fact, this past weekend, she got out of her wheelchair, and tripped and fell. She was sent to the ER for x-rays, as she fell on her broken hip side, but praise God, she was found to be okay this time–meaning nothing broken (except my heart.)

The falls are a constant risk, and you can only have a certain amount of falls once you get to assisted living, before you no longer qualify.  (Not to mention before she would have to go back to the nursing home.) There are levels of care that the assisted living provides, and with each add-on the cost increases to the point of becoming astronomical. Her costs would be close to $4,000 monthly with the needed additional care, such as the giving of medications and insulin shots, assistance in and out of the shower, help with transportation to and from doctor appointments, etc.

Several weeks ago, Rob and I researched the assisted living facilities in our local area. We decided that the Bluewater Bay and Sandestin locations were just too far to get to her quickly and conveniently. I would not want to make those long trips every time I needed to check on her or visit. So that pretty much left us with 2 choices. We decided on one that was near the hospital, and the clinic where her doctors are located. It was a little less expensive than the other one, and the rooms were actually larger. It was very nice. We looked at the one bedrooms.

So for the last two weeks, physical and occupational therapy have been working on getting my mom to a place where she could qualify for assisted living. However, they have warned us that she may not be able to achieve that goal right now, with unresolved physical and mental issues. We have not heard their assessment as of yet, but we do realize, while it would be the nicer option, in terms of some privacy and independence retained, it is also risky because she would only be checked on every 2 hours, instead of several times an hour, as she is now.

Then there is the option of going home. However, going home will never be the way it was. The social worker has informed us that if my brother moved in with her, and took her home, he would still need to provide 24 hour care (when he is not there) by a competent adult, who could do the things she needs done, and prevent her from doing the things she shouldn’t. The most basic care would be $10 to $15 dollars an hour, and it would probably be more, considering the amount of care and assistance she would need. Rob and I are concerned about the amount of distance to be covered in her home, and feel that minimizing the area she covers would contribute to her safety. We also feel that she would be very unhappy being eyeballed all day long. She is a very private person, as I am, and I understand the need for some privacy, if at all possible. Of course, with my brother and his son moving in, there would be much more housework, washing, cooking, etc., and she is not really able to do that. They have lived there before, and while everyone got along fine, it is still very difficult when you are used to living alone.

The final choice is to stay in the nursing home, and try to get a private room. This would be about $700 or so more a month, as a supplemental payment to Medicaid, but what a difference it would make. It has nearly driven her crazy (as it would me) to be in the room with different people, and to share a bathroom. Even though she claims to hate the nursing home, with the exception of one unsolved incident on the nighttime shift, everyone has treated her royally. We like all the nurses and feel we can talk to them, and some have become real advocates for her. They genuinely care about her (though she has grown increasingly difficult to get along with, because of her anger, frustration, and the dementia.) The nursing assistants are nice (though often very slow in answering the call button, but that is the case almost anywhere these days.) I have been pleasantly surprised at the general compassion and caring that the staff exhibits. There was one incident where a CNA  was rough with her in the night, and I was called and informed that she had 2 superficial abrasions on her wrist. Unfortunately, because Betty couldn’t remember the details, the investigation was dropped. But I requested that the overnight CNAs be accompanied by a nurse, though I don’t know if that is still continuing. (The patients are checked often in the night to see if they are wet.) But that is the only negative incident in regard to her personal care that has occurred. I know most everyone else very well, but I am not familiar with the overnight CNA staff.  As nursing facilities go, the staff is excellent. Yes, there are frustrations for all of us sometimes, but there would be anywhere.

This post is getting too long, so I will tell you the outcome of the meeting, and where we stand now in the process, in my next entry. To avoid a nervous breakdown and a physical one, I am having to trust God every step of the way. Sometimes I succeed at that, and sometimes I don’t. It is very, very difficult-the most difficult time of my life so far. I pray that the God who calmed the sea, would reach down and calm the storm in me…

Please see other articles that I have written here:

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

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4 Comments

  1. That’s got to be rough, seeing your mother decline physically and mentally. They say parents shouldn’t have to bury their children, but I think its almost as hard for children to “parent” their parents.

  2. Your dilemma in choosing a facility for your mother is a common concern for many clients. Unfortunately, the system is so compartmentalized that unless you fit squarely within a particular category, you run into major problems. Thanks for sharing your story. Perhaps at some point you can lay out the criteria for each type of facility. My best to your mother.

    Jonathan Rosenfeld
    Chicago, IL
    http://chicagonursinghomelawblog.com

  3. Jonathan: Thank you so much for your comments, and I checked out your page, and it has so much wonderful information! I will go back often to study it.
    Yes, it is so horrendously sad all the way around. At times my mother is very lucid, and she understands completely everything that is discussed, but then she doesn’t retain it. I have never been through such a heartbreaking time in my life, and I have been through a lot! (My dad died after triple bypass surgery 3 1/2 years ago, NOT as a result of the surgery, but from hospital acquired infections such as pnuemonia, staph, and serratia.)

    The only criteria assessment that I have seen at this point, is a form from the assisted living facility that documents what activities the person is capable of doing themselves, and which ones they need assistance with. This gets very detailed, and as you add on the ones that require assistance, of course you are in a higher level of care, which in turn costs more. I get so angry that it all too often comes down to cold dollars and cents. The cost of assisted living is truly astronomical, and even the supplementary cost to Medicaid of possibly getting a private nursing home room for my mom becomes expensive also, because they take almost all of her meager monthly retirement and social security income away at that point. That leaves us only with her small house (not yet completely paid for) as her only asset. We could possibly have to take out another mortgage on her house ourselves to even fund the private room. (Thank goodness my husband is an attorney who can fill in the blanks when the financial side gets way over my head.) However, he specializes in adoptions, so he is having to learn another whole area of the law with elder care. It will certainly open your eyes to your own possible future, and at this point I am quite frankly terrified! Please stop by any time, and I will visit your blog often as well! Lonnette

  4. Reg Fife: Thanks so much for your comments also, and I will check out your blog as well. I need all the help and advice that I can get. Thanks again, Lonnette


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