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I made a mistake tonight. My husband called, and said that my mom had called a couple of times and needed to speak to him, and that he had gone to talk with her. Of course, I was curious about her decision concerning the assisted living, so I asked what went down. She has decided to move out-she wasn’t even in her new, completed room for ONE WEEK. It would be a week this Sunday night. (After all that shopping, decorating, moving furniture, and lugging things back and forth from rooms, not to mention blood, sweat and tears–literally.) She told him that she wanted control of her life again. (Don’t we all?) But she made the decision, given the choices that the nursing home gave us, to go into assisted living. They said that she would have to have 24 hour care if she went home. (She said that she would run away, if she had to do that.) The other choices were stay in the nursing home and get a private room, or go into assisted living. Assisted living afforded the greatest independence for her, but also a safe, beautiful environment. She even loved the food! Now my brother has agreed to take her home. (So be it.) At least it relieves me of any feeling of continued responsibility for her. We told him that we did not think it was a good decision, but since when did either of them ever listen to anyone? She has dementia, and is no longer capable of giving herself her insulin shots and medications (and all that goes with it.) Even before her injuries, she was often shooting her insulin before she took her blood sugar. A very dangerous practice, as she is not supposed to take insulin if she is under 100.  (She told me that she felt like she needed it anyway, and would sometimes shoot it regardless.) She has gone low unexpectedly frequently (and quickly) in the past. i have saved her life repeatedly.

Whether he will get the caregiver help she needs or not–who knows?  He and his teen-aged son will be moving in. I can’t help but think that he is more concerned with not losing the house-our only inheritance. (I am sure that I will be removed from the will fairly quickly, but that is the least of my concerns.)  

My only concern was always for her welfare, and that she be provided for during her life– not money. (It’s a good thing–cause there isn’t any! Just the house, and money is still owed on it.) At least I no longer feel responsible. I did everything that I knew to do, to get her into a safe place. But he just went right in, and undid all that we had accomplished. She told my husband that she did not intend to use her walker forever, and that she wanted control of her house back. (He said that she was referring to the fact that people check on her every 2 hours at the assisted living-something she needs desperately.)  She complained again about how the nursing home staff would nag her about using her walker. It is obvious that she will rebel wherever she is. I think she resented the fact that she needed asssitance in and out of the shower, in assisted living as well. She will no doubt be doing that on her own also at home. And the other day when she turned down her shower, they said that she would have to take one the next time.  (She does not like to be told what to do by anyone. She would often refuse her showers at the nursing home, and cause quite a stir. Passive aggressive behavior.) And yet, this was a woman who often bathed twice a day at home.

I think I was most upset today about her callousness toward my feelings. I realized as I started crying (after hearing her words), that she would never take responsibility for anything that happened between us. I would always be the villan, and she would always be innocent of everything. I also realized that I don’t have any memories of her ever comforting me, or supporting me emotionally about anything. As I cried from frustration, I told my husband that I did not want to hear anymore from her, as it affected me very badly, and I had been doing a lot better today.

So they have made their choices, and they will have to live with them. She is supposed to give 30 days notice to assisted living, so I don’t know whether she will stay that long or leave. I can now truly walk away from this, knowing that there is nothing that I can do to make her stay in assisted living. Nothing that I can do to ensure that she uses her walker, or that she has help in and out of the shower, or that she has assistance with her insulin and medications. There is nothing more that I can do.

Another thing that really hurt me, was her remark that she didn’t realize it was that difficult on me to take care of her, and if it was, why didn’t I just say so, instead of getting upset. (That would be funny, if it wasn’t so pathetic!!!!) I could never  talk with her about anything. When I honestly told her the other day (in a phone call), that I was in tears, and could she please stay out of the new room long enough for us to finish it, and surprise her, she snapped my head off.

Very belligerently she said, “I told you I wouldn’t go in there, and if I told you I wouldn’t, then I won’t!” (You had to be there, and hear her snippy tone.) Then she added sarcastically, ” I won’t even walk past there, unless you say I can.”

(All of this tirade, just because I wanted to surprise her.) No grace from her, ever.

To try and share my feelings with her is hopeless. She has no empathy, or feeling for anything that I might be going through, and she never has.

But this estrangement is not about her care being difficult (though it was); this is about the way she treats me. (She indicated that if she had said mean things, she didn’t remember them.) Well, she did call me “mean, bitchy, and jealous” in our last phone call, but saying mean things is not what our realtionship was about either. It was about manipulation and control. It was about never being able to please her. It was about feeling invalidated by her. It was about always being called “high strung” and overly sensitive. It was about a lack of mothering and nurturing. It was about pressure and expectations. It was about her “prima donna” attitude. It was about everything always being about her.

After I developed a headache tonight, from the stress of it all, I dried my tears, and realized once again that I am free from her. I no longer have to feel any guilt. I have to let it go. I have to let her go. I am truly free from her. I just haven’t realized it yet…

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It was Friday-the day that my mom would be leaving the nursing home, after 4 1/2 months. She had entered when she broke her right foot, and left leg. She did her rehab, and was just about to go home (her home) when she fell and broke her right hip. Then she needed surgery that time, and she has never been the same mentally or physically.

She was so excited that it was the day she would be getting out of the facility to go to assisted living, that she started calling me very early, wondering where we were. I was exhausted, as I had been working for days and days on the necessary paperwork for her admittance to the assisted living. I had stayed up an ENTIRE night working on her medication list, and was so exhausted that I couldn’t make it to the necessary doctor appointment. (My husband had to take her.) We were both beyond collapse.

So I woke to my cell phone ringing (twice in a row) that morning, as I tried to grab just a little more sleep. Rob had told her that it would be 3:30 before we could get everything done and pick her up, but she had forgotten. Forgotten that I have to sleep sometime. Forgotten that my husband is a busy lawyer, and this was a workday. She had just forgotten that there was anything going on, except getting out of the place she hated. Really, the care was good, and while there were some frustrating things about the place, it was far better than I ever imagined a nursing home would be. (And far better than any in our immediate area, from what I have heard through the grapevine.)

When Rob arrived the night before, to start packing up her things, she had just gone low. She is an insulin dependent diabetic, and her blood sugar went down to 32. Wouldn’t you know it? (The night before she left.) Apparently the student nurse had never experienced this in reality (only from a textbook.) She asked Rob if it happened often, and he said it happened often enough to scare us to death, when she lived alone. (Seems like it happened the most when I was around–actually something to be thankful for, though it didn’t seem that way at the time.)

I can remember pouring 3 full glasses of orange juice down her at times, before she would begin to come around. It seemed like it would never take effect. The diabetes specialist told us to keep the glucose tablets nearby at all times, but they don’t even phase my mom. I truly believe she could eat half a bottle, and not recover properly. So OJ is the only thing that really works, and that not quickly enough for my anxious heart.

My mom will start laughing at first, and acting as though she is drunk. This makes it very difficult to get the juice down her properly. Then she will sometimes become combative, and refuse to drink the orange juice. (That’s also a LOT of fun.)

Finally she recovered, ate something, and fell fast asleep, while Rob packed her belongings. (I was at the assisted living apartment, making her bed, and seeing to it that she had what she needed, to stay in her temporary room for about a week, until her permanent one became available.) Rob joined me there later, and we worked until pretty late, and then fell into the bed.

She called me at least twice, saying that she was “chafing at the bit to get out”. But we weren’t able to get her out, until the paperwork was completed.

Rob arrived first to finish the small amount of packing that was left, and I was close behind. However, before I could leave, he called and said that he needed to bring me up to date on what had happened.

“Is it bad?” I asked, weary from all the crisis events.

“Pretty bad,” he answered.

“Let me call you on the way, so I won’t be any later.” I suggested.

I called him from the car, with the cell on the speaker phone, and he told me that my mom had fallen.

“Oh my God!” was all I could utter. Then, “Is she hurt?”

Turns out that the staff had examined her to the best of their ability, and it seemed that nothing was broken, though it also seemed that way the night I examined her, and she woke up the next morning and couldn’t walk, because she had broken her foot and leg. (Don’t ever let someone tell you that if a person walks on a hurt leg or foot–it’s not broken. The ER nurse pulled that on us, and I somehow suspected that she was totally wrong. Another theory bites the dust…)

At any rate, they called the nursing home doctor, and she said if Betty seemed okay, to let her go. Rob and I were angry with her, because when she fell, she was not using her walker (as usual.) She was busy fooling around her cabinets, and not holding on to it–and down she went, just like the last time that she was about to be released.

She was angry that the nurse had told Rob about the fall, and we were arguing in the hallway. This was not the sort of happy leaving the nursing home day that I had anticipated for her. She declared boldly that she was not going to have her walker attached to her every minute. I told her then she would likely end up in the nursing home for the rest of her life, if she broke something again. She said, “Not here. I’m never coming back here.”

“Where will you go?” I asked, exasperated. I tried to end this “middle of the hall showdown”, and took her to the car.

We got through that crisis, got her settled after another long night of unpacking her things, said our good-byes, and collapsed at home again. The next day in the late afternoon, we had to return a long distance urgent call from Chelsea’s grandmother (on her birth mother’s side) in England. Tune in later–that is ANOTHER wild story!

So after listening to her talk for about 2 hours, we headed over to the assisted living. When we arrived, we realized that we did not yet have an extra key for the temporary room. We hesitated to call out, as we had told her NOT to try to answer the door, when the staff knocked, as they all had pass keys. They would first knock, and then let themselves in. (One of my greatest fears was that she would feel that she had to go to the door each time they knocked, and would end up falling trying to get there too fast.)

Apparently, that is exactly what happened. As we called out to her from the hallway, she finally admitted that she was on the floor by the door. We ran to get the nurse, who brought the pass key and found her sitting on the floor. She was dazed, talking about being in bed, and telling her daddy that someone was at the door. She indicated that there were a lot of people in the bed, and wanted to know if they were still there. Then she added, “But Daddy’s dead!” My heart sunk. (What was happening?)

“Do you think she’s going low?” I asked the nurse. She then took her blood sugar, and it was high–in the 200s.

Betty explained that she had been asleep in a chair near the door-(she thought.) (Rob spotted her walker on the other side of the room, by the bed. This meant that she had walked across the room to the chair without her walker.) So it wasn’t near the chair when she awoke from a sound sleep, and heard the knock on the door. She apparently was experiencing dreaming and confusion (upon waking) and just walked over to the door (without the walker) and fell. (This is strange, because the workers are supposed to open the door and check on her every 2 hours–not just call out to her.) They said that she wasn’t in her room earlier when they checked. She said that she had not left her room since returning from supper, so we may never know the whole story! Something doesn’t add up for sure.

Imagine our dismay and fear. They chart all falls, and if she is fortunate enough not to break something again, after a couple of more falls, she will automatically enter the next care level, which could add as much as $500 (or more) to her monthly bill. (We will run out of money quickly at that rate.) So let’s see, that’s 2 falls in 3 days, but since one was at the nursing home, she only has one strike against her at the assisted living. (But her poor body doesn’t know this.)

The nurse told her to use her walker. We also suggested that she sit in her wheelchair for now (when she wasn’t in bed), and that way if she fell asleep, and felt like she needed to answer the door (which she doesn’t, but sometimes forgets) then she could roll over there in the chair, instead of walking.

She is very resistant to using her walker consistently, and after all she’s been through, I can’t believe that she would be so rebellious about something that could be the deciding factor, about whether she will spend the rest of her life in a nursing home. I cannot make her understand this, because she doesn’t want to understand it. (I will tell you more about this tomorrow.) For now, I am at my wits end with her, as she refuses to listen and comply. She’s clearly a rebel at heart…

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That’s the only way to explain things with my mom, and it has me baffled and saddened. Everyday is another heartbreak, as I listen to the things she says, and realize that I am losing her little by little. Tonight I went to the nursing home, and wheeled her into the dining room, to go over her current medications, because we will be seeing the doctor tomorrow, and have to get all the meds in order. I was curious to see if she retained much memory of her prescriptions, because it has been 4 1/2 months since she had to give them to herself. As the evening progressed, I realized how absolutely impossible it would have been for her to go back to doing that. (She even used to give herself the insulin 4x a day, and lots of other medications.) I didn’t get much help from her with the lists that I was going over, and I noticed that her attention span now is somewhat like a 5 year old child. She will try to focus for awhile, but then she will start to fidget. She’ll show me her latest bruises, as she has tissue paper skin that bruises at the slightest bump, and she seems to be very embarrassed about the constant black and blue marks. I tell her that she’s still beautiful and not too worry, but of course she does. Then she’ll tell me some story about the latest happenings at the nursing home, and we go on another rabbit trail for awhile. But I don’t mind…I love her dearly, and will listen to anything she wants to talk about. 

But as I was gathering up our papers from the dining room, she began to tell me things that saddened me again. She talks constantly lately of the kids that live in the nursing home. (None do.) She tells me that one got in her bed. She said he was about 6 years old, and he thought that he’d found his mother. One of the CNAs came in, and she finally found him (which my mom declares was hard to do, because his head was so small.) I try to smile as though it all makes sense, but it doesn’t.

Then she tells me that a Mrs. Cramer (don’t know who this is) got all the nursing home residents in a van, and took them on a trip, but they ended up back at CJ’s house. (This is the morning nurse.  My mom had a fantastic story awhile back about going to her house, and spending the night.) She says that they had a wonderful chicken dinner there. She seems quite pleased with that memory, and I don’t want to hurt her. Can it be all bad if the memory is a happy one?

Gently I asked, “And you don’t think you were dreaming?”

No“, she answered, and all I could say was, “Isn’t that something?.” As I’ve said before, while I try to calmly reorient her to the present time and place, I am quite concerned that she will not share these things with me, if I appear to be alarmed, or make her feel as though it couldn’t have happened. (She mentioned that the staff keeps telling her that there are no children, except of course, the visitors.) So I can sense her frustration when people don’t believe her. She believes completely that these things happened, and it would just worry her more, for me to say they couldn’t have…so I don’t. She also mentioned about the voices, or a radio, that keeps coming out of the plugs in her room, and I don’t know what to make of this either, as the nursing home does not have an intercom, like hospitals do. I keep trying to make sense of it all. Could a radio be playing next door? Is there noise outside (which I DID hear tonight, as I left. Very loud music, perhaps.) Are the children that she thinks she sees the same ones that were visiting tonight? NO, I know she’s not referring to them, because I remember her asking the nurse awhile back how the babies got up on her bedroom shelf, and how they stay up there so well– one was just “hovering.” I try to make sense out of it all, but it just doesn’t make sense, other than she is suffering from dementia. Many people have told me that anesthesia can affect the mind of anyone over 50–(yes 50!) Sometimes it has lasting, permanent effects on the brain, and her orthopedic surgeon warned me (before the surgery) that she may never be the same. It has definitely escalated since the hip surgery, but whether it is that, or the mild Alzheimer’s, that she was diagnosed with before all this, I don’t know. A diagnosis of Alzheimer’s is still very much a guess in the dark, as there are many forms of dementia, and it’s very difficult to distinguish between them. Still, as my counselor often reminds me, the end result is the same–confusion that tends to progress.

So here we are. I keep wondering, if perhaps when she gets settled in her new apartment, (and some of the stress of the nursing home is off of her) will her dementia get a little better? Or will she begin to tell these fantastic tales to the staff there? And if she does, will they say that she needs a higher level of care, or has to be moved to the memory care section of Assisted Living? I hope not, as I want her to be able to socialize with “normal” (whatever that is) people. I think it would make her very frustrated at this point, to be around people worse off cognitively than she is. So I hope that doesn’t happen.

If you were to visit with her briefly, you might think that everything is fine. She can still carry on a conversation wonderfully, and respond appropriately. But then suddenly, it will change, and as I like to say, you suddenly enter the Twilight Zone, where nothing makes sense anymore. This can happen almost mid sentence, and it will make your head spin around. Plus, she is so adamant about what she is saying. She truly believes it, and I think how sad it must be to believe something, but everyone else thinks you’re crazy. So I try not to hurt her by confronting her. I just listen, and try to make it all make sense. But I can’t, and sometimes I cry on the way home.


ALICE: I–I hardly know, sir, just at present–at least I know who I was when I got up this morning, but I think I must have changed several times since then.

And that’s how it seems with my mother…

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How can I describe this week? Saying good-bye to what once was, and moving toward the future. Saying good-bye (in many ways), to that wounded, adorable little girl that I adopted almost 17 years ago, at the age of 3. Accepting that she will be spending her birthday and Christmas in England, with her birth mom. (Her first Christmas away from home.) It’s been a week of realizing where I really stand with her, and yet how much I truly love her. She couldn’t hurt me so deeply, if I didn’t love her so much. It’s also been a time of realizing that I need some space between us, for my heart to mend. She has trampled it so many times, and I am weary of the pain. She does love me, and I love her, but the drama of it all has become too much, when I’m trying to take care of my mom, am not feeling well myself, and have already been through so much hell. I need some time away from Chelsea, and I believe that time away from us at Christmas, will remind her of all the wonderful memories she has from Christmases past.  She wanted to celebrate our Christmas in January, but we said no. I think since she made her choice impulsively, without thinking of our feelings, that she should not have her cake and eat it too. She should just spend the month of December with her birth mom, as she had planned, and let us have our family Christmas without her. Perhaps it will cause her to reflect on times past, and I know that she will miss Christmas with us. It was always a very special time in our family.

She already seems to be tiring of her birth mom calling her constantly, and of some of her ways. It turns out that her birth mom made it from England to Atlanta, but had neglected to see that her visa was in order, and was promptly sent back to England. She actually wanted Chelsea, (who she’s never met), to fly to Cancun, and then to jump on a sailboat (just the two of them) and sail into the U. S. (at Miami) illegally. That was even too much for an adventurous 19 year old. Chelsea thought that was crazy. These are the kinds of things that have worried us, as her mom is still very immature (even though she is 44), and sometimes doesn’t have good judgement. So we’ll see. I think Chelsea is already missing being home for Christmas, but I am sure that it will be exciting to go to England. She’s likely to be the envy of all her friends…and there’s nothing she likes better. I’m sure that it will all work out. (If you truly love something, then set it free, and all that… yeah.)

It’s also been a time of saying good-bye to what was my mom’s life…for so many years. We began to make plans this week for her to move into assisted living, and for her to leave her home behind. For now, my brother will rent the house, and we (Rob and I) have taken out a mortgage on it, until such time as it would cause us financial difficulty. Then we will have to sell it, and try to get some of our money back. If my brother still wants to live there, perhaps he could get a mortgage on it. We are just taking it one day at a time. Even with my mom’s limited monthly income, and my brother’s rent, we will still fall short of the monthly expenses needed for assisted living. We are trusting God to provide. We only have enough for a couple of years–not sure exactly, possibly three. But somehow, I feel it will all work out, according to God’s plan. That’s what faith is, isn’t it?

So after having my mom’s care plan meeting a little over a week ago, many things changed. The social worker and the Medicare/supervisor lady, acted as though we hadn’t hugged in their office (through tears) a couple of weeks ago. They were supposed to be increasing the physical therapy for the next 2 weeks, and then giving us an assessment of whether she was a candidate for assisted living. At the time, they were doubtful.

As we headed toward the back of the dining hall, where we normally meet, they told us we would have to meet in my mom’s room instead. All the parties joined us and gave their reviews. The physical therapist said that she could benefit from a little more therapy, but that she was progressing. The occupational therapist said that she was doing better, and was more motivated in their time together. Everyone said that she was at risk for falling, because quite often she neglected to use her wheelchair, or her walker. It seems like lately, this is partly due to stubborness, but more likely because she forgets the instructions. The activity person said that she was attending more activities. (This always makes my mom mad, because she doesn’t think that her status should depend on whether she attends a Bingo game or not.) I so totally agree! (I have to add here that one day as we were headed toward the atrium, someone said over the loudspeaker, for all the residents who wanted to participate in yoga, to meet in the dining hall.) This made me laugh out loud, because if you could see the residents at the nursing home, you would be hard put to find a single one who could do yoga! So funny!

Anyway, after all the team gave their reports, we were left with the “two big wigs” as my mom refers to them. They had been kind and gracious at our last few meetinga, but something had definitely changed. Even their demeanors were different. The social worker went back to chomping on her chewing gum with a callous look, while Miss Medicare looked almost angry. Her hair was in disarray, and she looked as though she had been fighting dragons all day, and it was only 10:15 a.m. Neither had any kind words for us, it seemed.

My mom was ready to rumble. She was angry and combative, and just wanted to get out of there.

“So where do we go from here?”, I asked.

Miss Medicare abruptly answered, “The ball is in your court now.”

“So you DO think she’s a candidate for assisted living?”, I asked.

Miss Chewing Gum answered, “After what the occupational therapist said, I think she would be an excellent candidate.”

Looking at Miss Medicare, I reminded her, “Because at our last meeting, you didn’t.”

“Well, at our last meeting she was…” (She trailed off in her speech.) I felt like reminding her that our last meeting was only 2 weeks ago, but I could see that she didn’t want to discuss it any farther. (They seemed to have forgotten our last meeting. Makes you wonder who really needs help.) I think it all boiled down to dollars and cents. My mom has acquired quite a bill (about $200.00 a day) since her Medicare and supplemental insurance ran out. I think their plan when they came in the room was to release her, because of that. I don’t know what we’ll do about the bill. We are applying for Medicaid for the month of October, but the rest of it will have to wait. We simply don’t have it to give in a lump sum at this time, and still be able to pay for her assisted living also. (I got a message from them today, threatening to turn it over to creditors, if we didn’t pay in 15-20 days.) Oh well, you can’t squeeze blood out of a turnip, as they say.

I was grateful that my mom was a candidate for assisted living (as they were adamant that she could not return home, without 24 hour care. They said that she already qualified as a permanent nursing home resident, due to her need for supervision of her insulin, and the cognitive issues that she is dealing with.) But neither she nor I really wanted that.

If she returned to her home, it would never really be the same. She had said that she would run away, if she was watched every minute. It would mean my brother and his teenaged son would have to move in with her, and she would need caregivers around the clock to help with her meds, and to watch over her. Knowing my mom like I do, I had a feeling that she would prefer the privacy (to some degree) that assisted living could provide, since home wouldn’t really be home, as she had known it. And I believe it would have been very difficult for my brother as well, though he was willing.

But Betty had staked out a position with Miss Medicare, and said, “I am NOT going to change my mind.” (About going to assisted living.) However, she had a few days to think about it.

After the meeting was over, I told her what my feelings were about the assited living–how at first I was so horribly sad about her leaving home, but after I saw the place, it was so very nice, that I began to think that she would like it there. She could get the help and supervision that she needed, but still have some privacy as well. (She feels that she is just too sick to try to manage a house, with others living there, knowing she would be tempted to do the laundry, cooking, and housecleaning, and yet realizing that she is no longer able. She would never be left alone for a moment, and that would be horrible.)

The first room they showed me at Benton House, had a chair just like hers in the (very) small sitting area. I could picture her in it watching TV, just like we had done at her house. I hope to get a smaller recliner, for the second chair. Then we can still sit and watch TV together. We enjoy looking at “Dancing With The Stars” and “American Idol.” We also like criminal and detective stories.

We suggested that she go with us that evening, and see Benton House. To my total surprise, she agreed. We got our tour, and the first room they showed my mom, was the one with the chair like hers. There was actually a cat in that room, that gave it a cozy feel, like a Hallmark card.

The room that my mom would actually be in was next door, but the lady who lives there is legally blind, and kind of skiddish about people coming in. However, once she went to the dining hall, Tina let us in. That lady is a bit of a pack rat, and it took a little more “vision” to see the possibilities of her room, but we looked around a few minutes, and left. The room would be available the last week of the month. The lady would be moving in with her sister, and after she moved out, the maintenance people would need to paint the apartment, and clean the carpets. The “apartment” consisted of a very small sitting area, a very tiny kitchen area (connected to the seating area) and a bedroom and bath. They have other apartments with larger floor plans, but no one but the very wealthy could afford any of the larger ones. Besides, with less room to walk in, perhaps there will be less room to fall in.

My mom had asked if we could go out to dinner, so we went to Coach and Four, an enjoyable steakhouse in our town. She loved her food, and was so happy, as the food at the nursing home is horrible! She has lost a lot of weight while she’s been there.

As we finished up, I took the initiative and said, “We really need to make a decision about this.”

To my amazement, once we explained how we planned to finance it, and reassured her, she decided to live there. (After what happened last week, I wondered if she would remember it tomorrow, but I was praying  that she would. And she did!)

This past week, Tina called and said that she had good news about the room. It turns out that a nicer room (at the same price) became available, with a window overlooking the courtyard. There are 2 courtyards there–one is for the regular residents, and one is for the memory care residents. My mom’s apartment is located in the regular residential area, but the courtyard outside her window is the memory care courtyard, and for that reason, I believe there will be far less activity and noise outside her window. The courtyard is very pleasant, and this room is far better. The only drawback is that the lady can’t catch her flight until November 4th, and therefore would not be able to vacate it until then. But the director offered to let Betty put a bed in the first room, until the nicer room became available. So even though that will be a little different than we had planned, it will allow her to get a far nicer room. This one is also a one bedroom, but it is slightly bigger. (We’ll take every little bit of extra space we can get.)

I can’t wait to decorate it. Of course, it will also need to be painted, and have the carpets cleaned, so there will be a delay of at least a day for the paint to dry, and for the room to air out, even after the lady has vacated it. Then I can decorate it for Betty, and we can move her in. There is a lot to do. Tomorrow we are going to shop for a bedroom set for her, as her bed at home is a king, and far too big. We will also need a  small recliner for any visitor, and tonight we picked out a larger compact refrigerator, and microwave. The microwave provided in the room is about the size of a sandwich, and the refrigerator is way too small. (I was surprised, but they gave us the okay to get the size we wanted.) We just got a medium microwave, and the cutest black compact refrigerator, that even had a small freezer, where she can put microwaveable dinners. (There is no stove, due to fire danger for the elderly who live there.) All her meals are provided, but if she doesn’t like something, she can fix a little snack in her room, anytime she’s still hungry. That is so great, after that horrible nursing home food. Most institutional food is not all that great, but even a slight improvement would be terrific.

Now, if we can just keep her on her feet–no more falls, then life is about to get better for her (and me.) In assisted living, they will check on her every 2 hours, give her the necessary insulin and medications, and provide laundry service (Rob will be so happy-he’s been doing all her laundry). They will also provide housekeeping services, utilities (except for cable and phone) and probably more ammenities that I’ve forgotten. We will be paying a lot for it, but it will be a better quality of life for her. I just hope we can afford it, for as long as she needs it. (That’s where the faith comes in.)

So we are all beginning new journeys. I will have some help with my mom; she will be starting a new life, and Chelsea will be meeting her birth mom, and hopefully, life will be a little less stressful…please God!

There is so much to be done, that I don’t know where to start, but I love decorating, and I can’t wait to fix it up for her. Please protect her from falling, Lord, so that she can have a better life.  And let her dance again…

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Well, backing up now in the story. One afternoon last week–Thursday to be exact–I received a call from the nursing home supervisor. She said that she had received a call from the Ortho doctor’s nurse, saying that my husband had called the office, and asked for the doctor to clarify her remarks to Betty about going home. The supervisor told them that they (the nursing home) would handle it from here.

When I got the call, I explained about our visit, where the Ortho doctor had blurted out that after a couple of more weeks of therapy, my mom could go home. The supervisor was very surprised about it, but said that since the doctor didn’t know my mom’s situation, she probably had no idea that suggesting going home was a bad idea. I told her that I never thought that the doctor had caused problems intentionally, however, she certainly had. The supervisor said that she would carry in the paper the doctor had sent, when she next talked to Betty, and point out that there was nothing written on it about going home. I told her that the doctor DID say that, and that I was sure that would be one thing my mother was not going to forget. I suggested that she remind my mom that the doctor also assumed that Betty was living with us.

Never in my wildest dreams did I think that the supervisor would march right into my mom’s room immediately. I thought she was referring to the next time we had a care plan meeting. In fact, I told her that I was sure my husband would want to talk with her about the conversation that he had with the Ortho’s nurse, and asked if she would be there a little while longer. She said that she would, and I immediately hung up, and called Rob. Before Rob could get back to her, the lady I spoke with, and the social worker had already confronted my mom.

The next call that I got was from my mom. I listened to a message that she apparently left right after they had talked with her. She said that they had informed her that she would be leaving the nursing home soon, but that since various health concerns had not been fully resolved, she would need to go to assisted living. My mom said that she told them no, and said that she would not change her mind. In the message she said, “I thought this was America…how can they tell someone to leave their home?” She certainly sounded very clear about this. (And who could blame her?) She said something about that she would probably be thrown in jail, but she wasn’t going there either. She asked that I call her, as soon as I got the message.

I was sick. It wasn’t supposed to be handled this way. Bless her heart–what a terrible shock it must have been. I don’t blame her for being upset. My heart was now broken in another place. (It must be nothing more than shards by now.)

My husband and I talked again, and he said that when he called the supervisor, that she informed him that Betty already knew the situation. He suggested to me that perhaps it was best that it happened this way, in that at least she could understand that it was not something we wanted, but something that the nursing home is required to do, if they think that an elderly person could be going into a dangerous situation. We decided to go to the nursing home that evening to speak with Betty ourselves. I knew that she must be very upset, and I wanted to comfort her, and try to explain what was going on.

We called my brother on the speaker phone from Rob’s office, and brought him up to speed on everything. It was an amicable call, where we all agreed that it was important to do what was safest and best for Betty. We made plans to have dinner with him the following day, to discuss what Betty said.

By the time we ate, called my brother, and arrived at the nursing home, it was almost 8:00 p.m. As I pushed on my mom’s door, I noticed that the room was totally dark, and apparently she and her roommate had already gone to bed. I said that quietly to Rob, but my mom heard my voice and called out to us. I walked over to her bed, and she said, “There was nothing else to do, so I decided to go to bed.”

“Do you feel like getting in your wheelchair, and going over to the atrium for a few minutes? We’d like to talk with you.” I said.

She said she would, and after we got her in her robe, off we went. (Of course, we told the nurse where we were going.)

We asked her what happened today, and she told the story of two ladies coming into her room, and what they had said. She said that they told her she would need to go to assisted living, and that if she went home instead, she would need 24 hour care. If she did not have it, they would put her in jail.

(Bless her heart–that is the way she perceived it, and she wasn’t that far off.) Rob explained to her that the nursing home had an obligation to protect the elderly that had been in their care, and that just the way that children are protected from harm under the law, the elderly were also. He said that they wouldn’t put her in jail, but what they were referring to was DCF-Department of Children and Families. (She seemed surprised that they were involved, because she didn’t have any small children.) We explained that the law requires them to know that an elderly person is going into a safe environment, where they will be protected.

Rob was very good with explaining everything to her, and told her that basically there were 3 choices:

1. To stay in the nursing home, and try to get a private room as soon as possible. (This nursing home does have a few private rooms available (though all are being used presently), and we would have to pay the difference of what Medicaid would cover, which would be about $25.00 a day extra, or roughly somewhere around $700-$750 extra monthly. But Medicaid would take care of the rest. They would take all of her monthly income, except for about $35.00 a month.

2. To go into assisted living, provided that she qualified for it, and met their assessment rules. This would require using her monthly income, and most probably, fairly soon selling the house (her only asset.) We explained that in the assisted living situation, she would be checked on about every 2 hours, and that she would have a tiny sitting and kitchen area with a microwave, and a small refrigerator. There would be a fairly large bedroom, that led to a large bathroom. The shower had built-in shower benches. They could provide assistance with her medications (which was very important now) and also assistance getting in and out of the shower. She would have weekly housecleaning, and also limited laundry services. She asked, “What about cooking?” We explained that they provided the meals in a dining room, and that she could supplement with sandwich makings, refrigerated items, and microwaveable foods in her room. (She seemed quite impressed with that.)

3. Go home, but not as it was before. There would have to be someone with her around the clock, watching her all the time. She could not be left there alone at any time. Tony and Brandon could move in, but she would also be taking on the burden of more people in the house and all that entails, and she agreed that it had been very difficult before. A lot more work (which she is not able to do) and a total lack of privacy. To this she said, “I’d run away.” (If someone was watching her all the time.) I’d had a feeling that she might feel that way, as we are both very private people that need time alone, so I understood completely.

Unfortunately, I had to explain to her why she could no longer give herself her insulin, or the Oxycontin and other medications, because she had said, “I can give myself my own insulin.” I tried to soften it by reminding her that anesthesia can often affect the mind, and that since her hip surgery, there had been some problems. I mentioned the time that she had told the staff that she spent the night at CJ’s house-(her morning shift nurse.) And how she had refused her shower that day, saying that she got it at CJ’s house, and that CJ had also made breakfast, and then took a nap. She said, “I DID spend the night at CJ’s.”

I told her that CJ lived in Baker, and it was too far. But she reported that CJ now lived in the compound (the nursing home), as did one of her CNAs, Soledad.  So she still thinks she spent the night with her. Normally, it is best to not argue about whether something is for real or not. I usually just try to change the subject, but in this case, we were trying to let her know that it wouldn’t be safe to give herself her meds anymore. When people have dementia, the things that they see and experience are very real to them. I asked if she had seen any babies on a shelf in her room, and she replied, “You know I don’t have much to do with babies anymore.” So I just let it drop. (This was reported to us by a nurse recently.) Normally I wouldn’t have brought any episodes up, as it is just best to reorient her when these things happen. But we were having “the talk” tonight, and trying to explain the unexplainable.

I wanted to cry. She was taking it all in, and being very brave. At the end, I said, “We all really want what is safest and best for you.”

She then answered that the “safest and best” was the most expensive (referring to Assisted Living.) We reassured her that it was her money and house, and she needed to use it to provide the best care possible for herself, as that was all that was important.

We then said that she could think about it, and let us know. She didn’t have to decide right then.

She said something like, “Bear with me for a little longer, while I think about it.” We both hugged her, and took her back to her room. I filled her water pitcher with ice, tucked her in, and kissed her good night. As sad as it was, at least it was out in the open, and not eating a hole in my stomach. I felt a little relief–until I got home and thought about it. Then I cried. It was not supposed to go like this. I have taken such good care of her for the 3 1/2 years since my dad died. I have nurtured her like my child, and put my life on hold to be there for her. It wasn’t supposed to end up with her having a broken foot, leg, and hip, and no place to call home. She had preferred to live in her own house, independently, for as long as possible. And that was our wish for her also. But the time has come when that’s not possible anymore, and her care needs are far too great for me at this point, considering my own bad health. So here we are.

As you know, if you read yesterday’s post, by Monday it was apparent that she did not remember much (if any) of what was said, because as I wheeled her past our favorite male nurse, she called out happily, “I’m going home in about 3 weeks.”

This has been hell on earth. I long to hold her, or just run away with her, but I know that I am not able to care for her anymore, (as she needs to be cared for.) There are the physical, mental, and medical issues that have become overwhelming. As I have mentioned before, our house is a logistical nightmare for her-with an upstairs kitchen, and a bathroom far down the hall from the spare bedroom. But the bottom line is that I am not able to do it, and I have had to come to terms with that. My own health is in severe jeopardy right now, and the stress of all this has nearly taken me out. (I have cried a river, and it’s still raining.)

Yesterday as we passed by the social worker’s office, on the way to the atrium, the social worker motioned for me to come in. I stepped in the door, and she told me that my mom had a care plan meeting scheduled for Thursday at 10:15 a.m. (This was the latest notice that we’ve gotten on a care plan meeting so far. Generally, they tell you about a week or so in advance.) I called Rob to make sure he was available. He had to cancel something, but he said that he would be there.

So now what? If my mother is not retaining information, will tomorrow be like the first time she’s ever heard of all this? Will it hurt her, (and anger her) as much as the first time? What are we going to do? We have to make a decision soon, as we have to settle the financial side of things. Right now we are paying the nursing home $200 dollars a day for her room, since Betty’s Medicare coverage ran out. This amounts to quite a bill already. Medicare is only presently covering her physical therapy. The supplemental insurance ran out quite awhile ago. Having to be in the nursing home continuously since mid June, has really thrown a curve in the coverage, as it doesn’t cover this many days, unless you are a permanent resident, and switch to Medicaid.

After leaving my mom yesterday, I cried and cried, and then sat up all night–a nervous wreck. Life is so hard…

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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…

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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…

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“Crying while driving” has a nice poetic ring to it, but it is not a wise thing to do. But when you feel like crying, wisdom is the last thing on your mind. So why I am crying while driving? Because I was on my way home once again, from the nursing home, feeling exhausted and in despair.

I cannot reveal yet the total story of things lately, but in time I will. (So it is much sadder than the words I write.) Tonight I arrived, with a basketful of clean clothes for my mom, and proceeded to put them neatly in her cabinet. Blouses on one side and pants on the other. I used to combine them into outfits for her, but she said that she would rather pick out her own combinations, and that makes a lot of sense to me, as it is one of the few things that she has any choice about these days. The long sleeved blouses and slacks are on the bottom shelf; the short sleeved blouses and her gowns are on the middle shelf. The top shelf is reserved for the things she doesn’t need as frequently, like extra boxes of Kleenex, red bedroom shoes, and toilet tissue. And in the separate, but attached, cabinet on the right, there are the diapers, tactfully called “briefs” in this world where there’s only so much stark truth that can be tolerated.

I had also bought a standing mirror for her to use, while putting on her makeup and combing her hair. The bedside tray tables in the nursing home do not have mirrors, like the ones in the hospital do. She had been using a hand held mirror, but this would be much more convenient, and less hassle. I am always arriving with things that (I hope) will improve the quality of her life, in this place she dislikes so very much.

The lady in the room with my mom, called us “angels” and said how sweet it is that we do Betty’s laundry, and fold and put away her clothes. She never had children, but has 2 nieces from Birmingham, who are helping to facilitate her move into an assisted living apartment, on the same property where she previously lived, in a military retirement village. Since the nieces are so far away, their visits are limited, and so this little French lady thinks the attention that we give my mom is wonderful. Betty praised Rob to the skies, calling him “so special” (as he is actually doing her laundry, bless his heart.) And as an afterthought, she said, “Lonnette is special too.”

Earlier, I noticed a grouping of towels on the end of her bed. They were neatly folded, except for the washcloth, and she explained, “Those are my towels that I’m going to wash out before I go to bed.” My mind did cartwheels at that statement, but somehow I managed a weak smile, as though I understood. This was just another day in the land of dementia, and it feels like being in the Twilight Zone. One moment things are going well, and the next they aren’t. It is very disconcerting and confusing. I’m still trying to accept it.

My mom was a very smart lady all of her life. Unable to afford college, she worked as a secretary at one place or another. Once she worked for the Coca-Cola company in Atlanta, and after moving to Florida, she worked on one of the military bases for the Comptroller’s office, until she retired. She was an excellent, efficient secretary, and always gave it her all. She was also one of the most organized people that I have ever known (with regard to paperwork, particularly.) And still is, or was.

We brought 2 Krystal corn-dogs (by request) and she was busily (and happily) eating them, as we talked. (She hates the nursing home food, and I don’t blame her. I had a dinner there at a luau one evening, and I didn’t really like it either.) So as often as I can, I bring her treats, or make picnic dinners or snacks for her. Sometimes I’ll even cook a casserole that she enjoys.

I waited for the nurse to make her nighttime drug pass, and asked if I could speak to her for a moment. We discussed the antibiotic, Cipro, that my mom has been on for yet another urinary tract infection, and I remind her to make a note that she has had clostridium difficile before, as a result of that same antibiotic (in excess.) (My mom’s stomach has been upset for several days, and we suspect the Cipro.) At any rate, my mom then decided that she needed to go to the bathroom, and after helping her safely into the room, we resumed our conversation.

Imagine my shock, when they told me that she now refuses to take a shower! I remembered that a week ago she had refused on a Monday evening, declaring that she had already had her shower earlier in the day. This was part of an elaborate psychotic (or hallucinatory) episode that I will discuss in more detail in another post. At any rate, she had not had a shower, and she refused to have one. Tonight they told me that she refused again. (In the nursing home, they only get 2 showers a week–one on Monday, and one on Thursday.) They then proceeded to tell me that she refused last Thursday’s shower also. (This is totally out of character for her.)

“So, you’re telling me that she has not taken a shower since Thursday a week ago?” I asked in disbelief. (She last had a shower on a Thursday. Then she missed a Monday, a Thursday, and now another Monday.) This meant that she would not have a chance at a shower again, until this coming Thursday.

 “Are the nurses (along with the assistants) involved in encouraging her to take a shower?,” I asked, exasperated.

“Yes,” Mrs. B answered, “But she turns us down also. We thought we would speak to you about it, and maybe you could encourage her to agree to a shower.”

About that time, my mom was ready to exit the bathroom, and our conversation ended.

Since it was getting late (for nursing home residents, anyway) we got up to leave. Then my mom tried once again to get up from her wheelchair, which was at the foot of her bed. I asked her to please let me get it near the bedside for her, and reminded her (for the hundreth time) that we needed to lock the brakes on it every time before she got up. She stood, and then pivoted into position on the side of the bed, and sat down. (They have recently informed me that most of her transfers are unsafe, so they want her to be supervised, but she often attempts the transfers without them.) As I told her goodnight and kissed her goodbye, I realized that she could not yet lift her feet into the bed alone, because of her hip surgery. I bent down to lift her legs, and she told me that she only needed help with the right leg (the side of her operation) and then she showed me that she was able to lift the left leg into the bed.

“That’s good,” I praised her.

She answered, “And when I can do the other one, then I can go home.”

Love hurts.

So that is why I was crying while driving. It might not make total sense to you right now, but it will in the days to come…


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Knowing that new clothes always make a lady feel better, I shopped a little for my mom yesterday. For the last 3 years, I have been by her side for all her shopping, and I know very well what styles she likes, and what pleases her.

So tonight was the night we tried on clothes, in the half of the room that is hers. This was quite difficult, as she was in her wheelchair, and barely able to stand as of yet, without great effort and some discomfort.

Little Ferl, the dear, frail, French lady in the nearby bed, had an amused look on her face, as she observed our laughter and fun. We pulled the curtain around our side of the room, and giggled as we struggled to make the pants go on. When we had a full outfit, we would push the curtain back, with a bit of a “TA DA” and my mom would wheel over to Ferl’s side of the tiny room, to get her opinion. Struggling to her feet, and with the help of her walker, she “modeled” her newest fashions, on the nursing home runway.

I played the emcee, saying, “Ladies and gentlemen, we’ll be right back.” And then I pulled the curtain back again, to disguise what was going on “behind the scenes.”

Ferl does not have any children, but she does have 2 nieces, who she loves dearly. They had visited her today from Birmingham. Ferl said proudly, “Today is a family day!”

To help my mom physically get through the trying-on part, I brought a Wendy’s hamburger, and fries for her to munch on, in between outfits. (Hey-a girl needs energy when she tries on clothes.) We would try on something, and then she would take a bite. Even at that, she really didn’t eat much, but I try to bring her a little something each time I come, just in case she is hungry, because the food there is terrible.

My mom modeled two new complete outfits, and we also tried out 2 pairs of black pants. Long before we finished, sweet Ferl fell fast asleep. She and my mom have become very close. My mother has become her protector, looking out for her since she came to the nursing home. She often pats my mom’s hand and tells her how thankful she is for her friendship. Sadly, (and happily for Ferl) she will probably be leaving soon. She lives in Bob Hope Village, in a retirement apartment, but she tells me that she will now be moving to an assisted living apartment there. The way she came to be in the nursing home is that one evening she fell in the bathroom of her apartment, and ended up staying on the floor all night, until a neighbor found her. She hurt herself pretty badly in the fall, but fortunately she didn’t break anything. She’s been at the nursing home, getting some physical therapy. We will hate to see her go, because we like her very much, and she was a welcome change from the grumpy Addie.

Before Ferl fell asleep, she told us several times, that she enjoyed listening to us having fun, trying on the clothes, and it made me realize that we have had so many fun, special times. We’ve faced so much together, and because of that, we are more than friends. Sometimes I have trouble knowing where she ends, and I begin. It is like being a mom, and taking care of a little one. You are meshed, in a special, undefinable way.

I helped my mom with her gown, and called for the CNA to help get her in bed. I leaned over and gave her a kiss, and she told me she loved me, and that I made a “great mother.” (Role reversal again.) I pulled the chain on her light over the bed, and made my way through the room in the dark, to the hallway, and said goodnight to the CNA, who was sitting in the corner reading a book.

As I walked across the parking lot to the car, I wondered if she would be able to function, on her own, at home anymore. She has seen roommate after roommate making plans for a different existence. Sophie was (more than likely) going to Mexico, to live in a cottage on her son’s property. It seemed a much nicer thought than moving into an assisted living arrangement here, while her 2 daughters argued over what was best for her. Poor Addie (who had Alzheimer’s), could not believe that she was not going home, when her family arrived to get her. They were taking her to another institution, better equipped to handle dementia patients. And now Ferl, who was living happily in her little retirement apartment, until she fell, is making plans to transfer to assisted living. I am sure that none of this has escaped my mom.

But we talk often about what it will be like when she gets home–of how she will sit in her chair and watch TV, and go to the bathroom (without an audience), and eat food that she actually likes, and sleep in her own bed. Tonight she said, “I want to go home. I feel like a kid who’s been at summer camp too long.” (Such a great description.)

She will have her chance to go back, God willing. We will just have to see how it goes. But she will have an opportunity to do all those things, that we all take for granted everyday, but she no longer does.

All of these thoughts were on my mind, as I reached for the handle to my car door, but I brushed it all aside, because tonight we had fun, she said that she loved me, and it was “just us girls.” Simple pleasures…

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After several days of overwhelming heartache and hurt, I would like to turn my focus to the simple pleasures of life. It’s not the expensive, elaborate things that mean the most in life, but rather the simple things.

Last Sunday, on the spur of the moment, I stopped in the deli at Publix, and picked up some snack items, for an informal picnic with my mom, at the nursing home. She had mentioned that she would love some potato salad, and Publix has terrific potato salad. My favorite is called “Southern Style.” It tastes just like homemade! I also picked up some sliced Havarti cheese, some fresh fruit, and 2 small slices of cheesecake. Even though my mom is a diabetic, at the end of the day, she will always have a snack to ensure that her blood sugar does not go low in the night. (So we considered the cheesecake her bedtime snack.) Okay, that’s stretching it a bit, but if you can’t live a little every now and then, what’s the point, right?

I bought one of the Publix green tote-bags for $.99, and put all the picnic items in it. I had already made up a bag of drinks, utensils, plates, and napkins.  So bearing food gifts, I headed toward the nursing home.

This nursing home has almost no decent places for a family to meet, outside of the room. And my mom looks forward to getting out of the room whenever she can. But we discovered a “get-away” made in heaven. The Senior Living Residential area has a lovely atrium, and it just so happens that there are actually hidden away doors, far down at the end of the hall, that connect the two. Bingo!!!

It was almost 7:00 p.m. when I arrived. I called for the CNA to transfer my mom to her wheelchair, and I kidnapped her! We ran away to the atirum. (Okay, I did stop at the nurse’s desk, and tell them where we would be.) I’m too law abiding not to. LOL!

The atrium is beautiful. It looks like a huge courtyard, and it even has lights on poles, that have fans on top of them, near each sitting area. You can adjust the brightness of the lights, and the power of the fans, by an easy to reach switch. The atrium also has lots of tables and chairs, and game areas, etc., and most of all, lots of green plants. Can you imagine how good this seemed to us? We were away from the unpleasant smells, and the heartbreaking sights of the nursing home, and we pretended (for a little while) that we were together again, on one of our “girls nights out.”  I put a lace tablecloth on the table, and added a battery-operated flickering candle that looked so real!We laughed and talked, and squealed about how good everything  tasted (especially the cheesecake.) One older lady, who lived in the apartments, and was strolling by with her walker, stopped to see what we were doing. (She thought the picnic wasdelightful.) We had so much fun!

We actually forgot about the time, and finally realized that we had better get back to the room, as the nurses did their nightly “drug pass” between 8:00 and 8:30 p.m. It was a little after 8:30. (However, my favorite male nurse (who only works my mom’s hall sporadically) said it was okay for us to go, and that we could stay as long as we liked, and he would leave her room for last.) It pays to have connections! LOL!

As we rushed back to the nursing home part, we saw Snowball, the cat, prancing down the hall towards us. Snowball is a declawed cat that lives in the nursing home. How cool is that? (D. J. The Golden Retriever visits every week also.)

We told everyone that we passed that we had “run away” for awhile. They all smiled and nodded with delight. We smiled too, until we remembered that the nurse would be taking Betty’s blood sugar before bedtime. LOL! Oh well

We have so many of these precious times to recall in the “outside world”, and we are making memories still, even in the nursing home. And so we find happiness in the simple things, and in just being together…