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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…

Please see other articles that I have written here:

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

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3 Comments

  1. Sparkle,
    This is such a difficult time as we become the “parent” to our parents…I have walked this road with dementia through my father and my husband’s parents and it is truly nothing but heartache and heart break. But it is and you and your husband and brother are doing the best that can possibly be done.

    In my father’s case, he was given the option of living with me or my older sister. He chose to go to Assisted Living and for us, we took solice that it was his decision. He was there for 2 plus years.

    At the end of his assisted living stay, his dementia was the reason why he had to leave. He became combative with the staff. When he was hospitalized and released to the nursing home, my dad purposed to die and he did in 6 short weeks. I will ever be amazed at the mind and its influence over the physical.

    On his last birthday, I and my brother’s widow tucked my dad in bed. He asked us to pray for the church. (In 1948, he was one of the charter members of the local church) He said that there was some who were not sincere in their efforts and he wanted us to pray and we did.

    As we were leaving, he asked about my brother. We explained that he was gone and it was almost 15 years since the racing accident that took his life. My dad broke down and cried like a baby. He had forgotten about my brother’s death and it was as if he was reliving this tragedy for the first time…dementia is so cruel…especially if your parent has been larger than life in your eyes.

    Your mother may never be able to grasp all that you say to her and it may be necessary to repeat the painful things many times over. It does damage the soul with grief so many times over.

    I wish there was something that could be done to help them while they are in this “fog” of life. So far, there is little offered in the way of medical remedies.

    The greatest pain for me is that my husband’s parents have no memory of him or his days with cancer. They think that he is just not communicating with them. They do not recognize me as his wife. I am a stranger to them. When they do recall my husband, they describe things that happened with my husband’s uncle not him. Orienting them does nothing. Whatever they understand is gone in 60 seconds if not sooner…it broke my husband’s heart in his last days on this earth.

    He was not able to speak for 24 hours prior to his death. His brother brought them down to see my husband the day before he died. His last audible words while he struggled for breath was “Mom”. No one will ever know just how difficult it was for him to say anything, but he mustered this last effort for the first woman he ever loved and that is “Mom”. It took all that was left in him to call out to his mother when he heard her voice…It broke my heart into a million pieces that he wanted and needed the comfort that only a mother can bring and she was oblivious to his voice…Dementia is a cruel thief. It steals, kills and destroys a soul and all that ever loved tht soul.

    My heart hurts for you and your brother. It is one of the most difficult times in life to be the captain of your mother’s ship, but truly she is not able to be in charge of her life.

    As Frank reflects on his blog called “Within Crepusulim”, this twilight is painful for everyone who ever loved your mother, especially for you.

    You are in my thoughts and prayers…

  2. Hi, Sparkle, I am the Frank that comments on Shadowlands. I have often thought I should visit your site, but never quite got to it. Today Shadowlands asked me to visit you. As I read your most recent posts it is as if I have taken a short walk back in time. It is a most uncomfortable time for you and a time that is foreign to you. But for me, since I have traveled that same road with both of my parents, it is poignant how much toll it is taking on you and your family, as well as your mother. I do feel so badly for you, but if you allow I think I can help you in many ways of dealing with everything.

    I have a blog, Within Crepusculum: http:/crepusculum60.wordpress.com. If you wish, come visit and read only a couple of my posts so that you understand where I am with my Mother. I have cared for her for the past four years since she had a debilitating stroke. Now she is at the place that all she need do is reach out and she will leave this world for the next.

    The two posts are:
    http://crepusculum60.wordpress.com/wp-admin/post.php?action=edit&post=27

    http://crepusculum60.wordpress.com/2008/02/28/never-goodbye/

    I suggest you read these only so that you know I am not just making airy comments without some basis. My Mother’s troubles also started over a broken hip in Arizona. The hip is a very treacherous place to have a break and leads the older person into a cavalcade of experiences. And as read your posts it strikes me that your family also (as we did) are receiving opposing info about your mother and also heart wrenching hours deciding what to do with her to make her happy and you feel she is safe.

    During the last year and half of my father’s life I paid a couple to be caretakers for him and live in my parents home. For my Mother I would not think of a nursing home because I had to place my father in a nursing home the month before he died. Then we were moving to Arizona and I was going to take care of him in my home with help. He died rather than wait and I couldn’t face that if it happened to my Mother.

    She has lived with us for 6 years, but it has only been the last 4 years that she required total care. In that time Physical therapists gave up on her, doctors have told her she should be thankful she was alive others said she should just die. Each and every time she told them off and now I do. It is her decision even now. Even though it is hard for her to talk, see and hear, with patience you still can find out that she knows what she wants.

    If you would like to hear more, or have an ear that you can write to someone one please let me know. And please, Sparkle, you must take a little time to curl up on a sofa, sip a wine or a cappucino and reflect and try to find yet a stream of sun to fill your heart. Don’t let it get to you….if you do then even your Mother will suffer. You need to take care of yourself and then you will be more prepared to take care of her.

    I will keep you in my thoughts and prayers and hope that each new tomorrow will be brighter for you and your family. My best to you and a warm wish of health to your Mother from me.
    Frank

  3. Sparkle, the first post address is all wrong. The correct address is:
    http://crepusculum60.wordpress.com/2008/02/10/momma/
    Frank


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