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Category Archives: dementia

A sharp pain echoes through my heart

Before the tears begin to fall.

And in the darkness of my room

I cry.

For everything that’s ever hurt me-

And all the things that ever will,

Alone in the blackness-

I cry.

And the tears become sobs

And the sobs become screams

And the screams become prayers-

That I cry.

Are Your arms wide enough-

Is Your love strong enough-

To comfort this child

When I cry?

Let me hear Your gentle words

Let me feel Your presence here.

Let me know I’m not alone-

As I cry.

But You are strangely silent

And I feel no arms around me

As I call out Your name

And I cry.

I wail until my heart is empty-

Till crystal pain no longer flows.

And fall asleep among the teardrops-

That I cried.

Your angels sang a lullaby-

Your gift of tears- a sweet release,

And You were with me all the while

I cried.            

Lonnette Harrell

Last night I cried, because I thought about my mother, as I often do. I know she must be sinking farther and farther into dementia, and I can’t do anything about it. I love her and miss her, and I wish things had ended differently. (But I guess she made her choice also.) I wish I could comfort her, in that far-away place she now dwells. How can you be angry with someone who is now probably like a confused child?

I cry because I remember her fear of dementia, and her fear of having to live that way. I cry because I tried so hard to care for her and please her, and she called me hateful names (while she was still in her right mind.) I cry because I’ve always loved her, and I just wanted her to love me back.

I cry because I wish that I could soothe her fears, and I can’t. All of this is progressing so rapidly, and I could see it plainly awhile back. We were told that it would not get better. I knew that her care needs were more than I could handle anymore, and I was already 3 1/2 years into total exhaustion, and sick myself. There should be no shame in saying that I could not continue on as I was. I simply could not. I knew that I was going to die.  But my brother didn’t get it. Now maybe he will.

How frightening it must be, to be trapped in your very physically ill body, losing your mind. It seems like some kind of cruel nightmare, that has no ending. She was so afraid of becoming like the people we saw in the halls of the nursing home (where she was for 5 1/2 months of rehab.) I always reassured her, and tried to help her through her confusion, and prayed that it would pass. It really accelerated after her hip surgery. She was never really the same after that, and we were warned by the Ortho doctor that many elderly people are affected that way by the anesthesia.

And now I can’t get to her. She might as well be in a castle with a drawbridge and a moat, instead of a small house in a small town with my angry brother, and a caregiver. She’s isolated. She probably wouldn’t want to see me anyway.

And I could not go back without becoming totally involved in her care, and I am not physically able to do that anymore. I have been very sick lately, and I just can no longer take the stress of her care, or of her emotional treatment of me. 

That is why she was so much better off in the Assisted Living, where she could get socialization, food she loved, and medical assistance and supervision.  There was a Memory Care Unit there as well, if she needed it later on. But my brother was determined to bring her home, and now he is probably overwhelmed as well. (You cannot possibly know what it is like to care for all her needs until you’ve done it. I could not keep up anymore, and the stress of it all was killing me.) I needed help desperately.

I can only reach her through my prayers. I ask God to comfort her, and strengthen her. I ask Him to take care of her, as I no longer can. I ask Him to soften her heart towards me, and let her memories be of our happy times together (and there were quite a few, in spite of our problems.) I ask God to tell her I love her.

But when I can’t take the pain in my heart anymore, I cry…

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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…

Please see other articles that I have written here:

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

I realize that by posting this message, I am opening myself up to criticism from people who cannot possibly understand what I’ve been through for the last 3 1/2 years. But the writer in me feels that it is important to continue the story-just the way it played out. To do differently is to deny the pain, the heartache, and the sorrow that I am now experiencing. Not because of the decision that I have made, but because of trying to please my mother for my entire life, and never managing to feel that I truly did. The past few days have been filled with the deepest hurt that I have ever known. I don’t know how I have managed to get through them, other than by the grace of God, and with the help of my husband. For those who have been following this blog, you know the tremendous challenges that I have faced with my mom in the past months and years. I felt overwhelmed every day of my life, since my dad died 3 1/2 years ago. I developed a sleep disorder, because the responsibility of her care made me on edge every moment. I have responded to so many emergencies with her lately, that I have lost count. I felt so pressured to keep her alive (and reasonably happy), that I could not focus on anything else. Therefore, I would often find myself staying up all night, trying to find some time to call my own-writing out my feelings, and praying that perhaps I would connect with someone–anyone–who understood my plight.

I tried in every way possible to please her, but I don’t think that is possible.  I have sacrificed my health, my marriage, and my sanity to be at her beck and call, and I can’t do it anymore. What follows is a letter I wrote to an elder care group about these last few days. For those of you who know the story already, you’ll have to endure some background information that you already know, but read on for the conclusion. (Please forgive the formatting. I couldn’t get it to come out right when I copied and pasted.)

I Have To Save My Life

My dad died 3 1/2 years ago, and I have been the primary caregiver for
my mom for those years. While she still lived independently, she is an
insulin dependent diabetic, prone to going low unexpectedly, and we had
to be in touch with her continually. (I saved her life many times by
giving her OJ or something sweet, to bring her blood sugar back up. Each
time it was frightening.) I kept my phone by my side at all times, and
developed a sleep disorder, because I could not sleep at night,
since her care became my responsibility. It wasn’t really safe for her
to live on her own anymore, but that is what she wanted. I did offer
initially to have her move in with us, when my dad died. (I am so glad
now that she didn’t, as she would have driven us totally crazy.) But we
had a good system. She called when she got up, and when she went to bed.
I called in-between. I did all the errands and doctor appointments-(a
different doctor for every body part.) I took her shopping, to the post
office, hairdresser, and everywhere else she went. My brother has only
taken her somewhere once or twice ( perhaps to the pharmacy) that I remember, and
that was when I was out of town for a couple of days, and he had to.
Because I had a torn rotator cuff (shoulder), he did the heavy grocery
shopping, though I did all the supplemental buying of additional needed groceries. (Still
lugging in cases of diet cokes, and gallons of heavy milk, late into the
evenings.) I did all the prescription and pharmacy runs, etc.

My brother did very little else, but visit for lunch every day. But he is her Golden Boy,
since he came from the man she loved, and I am her slave, since I came
from the man she didn’t (and I look like him.) I took all this for all
my life, and treated her with more kindness and compassion than I am
even capable of. It was like God was loving her through me. I was always
gentle and loving with her. I can only think of possibly 3 times in my
life when I really stood up to her, and one time I ended up checking
myself into the mental health unit, feeling suicidal. (It was because I never felt any
compassion or support from her, concerning anything that was going on in
my life. I desperately needed a mother. But it was always all about her.
I felt like I was the mother from the time I was little. I had no
nurturing, except from my grandmother, and the lack of it has damaged me
terribly.) Well, about 4 1/2 months ago, she fell (while I was holding
her hand coming out of a Waffle House) and broke her right foot, and her
left leg. She was in a nursing home for that, and completed her rehab,
and was about to be released. Then she fell while trying to get to the
bathroom, and broke her right hip. This time surgery was required, and
the anesthesia really took a toll on her mind. She can’t remember
things, has hallucinations (seeing and hearing things), and seems to be
paranoid to some degree. At any rate, she was always outspoken, but now
all her inhibitions (if she ever had any) are gone, and she is very
belligerent and angry. One nurse’s aid would come out of her room almost
crying, from her bad temper. (She looked like she had been in The Lion’s
Den.)

After my mother’s hip surgery, she was no longer capable of living
on her own, and was told she would either have to have someone watch her
24 hours a day, or go into assisted living. She didn’t want to do either
of those, but finally agreed to assisted living, after making everyone
crazy in the mean time. She hated the nursing home (even though the
staff, for the most part, was wonderful.) I visited her faithfully every
other day, sometimes every day. (My brother visited her sporadically-on his way fishing.)

But he’s her hero, and I’m Cinderella (before the party and the prince.) She
babies him all the time, and shows a big difference in the way she
treats us. She comes to his defense always, even when he treats me
badly, and doesn’t pay back money he’s borrowed. (In spite of all this,
I also treat him very kindly, with the exception of one time recently, when I’d had enough.)

He can basically do no wrong. If I disagree with him about anything (which I almost never do), she jumps all over me.

I took her on elegant picnics to the Atrium, complete with battery
operated candles and white tablecloths. I made food to bring in, since
she hated the nursing home food. (It was bad.) I listened to her
complain continually about everything. I comforted her, encouraged her,
and was a good, attentive advocate for her with the doctors and nurses,
etc. I did all that I knew to do. Then I went home and cried.

She was moved into a temporary room at the assisted living, until her
permanent room became available. I was going to decorate it for her, and
surprise her with everything wonderful. This had to all be purchased very 
quickly. I told her that I would decorate with the basics, and then we
would go to her house, and get her pictures, and all the things that she
wanted around her. She criticized the color of the furniture I got, the
fact that we painted the room white, (I was trying to recreate the feel
of a room she had (that she loved) when she was younger.) The room she had then, was
painted red with white trim. I knew a one room apartment would be too
dark with red walls, so I had them paint the room white, and I am going
to do red (almost crimson) accents-bedspread,  red recliner, beautiful
artwork, white lamps, white furniture, and touches of gold here and
there. Believe me when I tell you that it is going to be gorgeous. The
ALF Director already stopped by and loved it, and we hadn’t even gotten
started good. My mother and I fought yesterday because she got someone
to let her in the room, and I had asked her to please wait until we got
it decorated, and then we could be with her, when she saw it completed.
I didn’t really mind that she went in that time, and a previous time,
when I showed her the room. I just asked if she would wait one day until
we finished it, so we could surprise her. I have shopped and worked
myself to death, getting all the things for  a couple of weeks. She was
angry that I wanted her to give me a day to finish it. She snapped at me.

She won’t cooperate with anything. She fights me on everything! We had words,
because I was in tears. Then we really had words. All of her
mistreatment of me came to the surface, and I told her what I thought
finally. (I had to, or die.)

She refuses to use her walker. She fell the
day we went to check her out of the nursing home, because she wouldn’t
use her walker. She fell her second day in the assisted living, because
she went to the door without her walker. She will not listen to anyone!
She acts like a Prima Donna. (This is her basic nature.) She says she is
not going to be attached to that thing every minute. If she falls 2 more
times (and is fortunate enough not to break anything) her care level
will go up tremendously at the ALF. (And of course, so will the money we
have to pay. We are already paying almost $4,000 a month.) But if she
falls, and has to go back to the nursing home, she will have to remain
there for the rest of her life, as there will be no more money, and she
does qualify for a nursing home right now. She will have to go on
Medicaid, if she becomes a permanent resident. (We owe the nursing home
a lot of money now, because her Medicare and supplemental insurance ran
out before her 4 1/2 month stay there did.) We can only afford to keep
her in assisted living for about 2 years, if she doesn’t fall again, and
break something. But if she does, and requires rehab, her somewhat
independent living will be over, because she won’t have the finances,
and Medicaid will take all her income, including any from the sale of
her house.

I am at my wits end. She is rebellious and defiant. She needs to realize
that this has not just taken a toll on her, but me also. I am
exhausted beyond description!!!  I spent 6 hours with her in the ER, while she screamed in
agonizing pain (after breaking her hip), and even morphine could not
control it. (I don’t want to go through that again.)

But even after all that, she still refuses to comply with using her walker.

I told her she was acting like an unruly child by refusing to use her walker, and that she was going to fall, and have to spend the rest of her life in a nursing home, because of her rebellion.

Everyone (doctors, nurses, aids) have repeatedly told her to use her
walker, and she will not, most of the time. She resents being reminded
by anyone. We frequently find it way across the room from where she is.

We have continually tried to tell her the consequences of
another fall, but she is stubborn. She will not listen to anyone! She
understands what she is doing.

In our heated discussion, I told her that no one could have taken better
care of her than I did (since Sam died.) No one.
She said, “Not always. Not always.” (That really hurt.) Before God, I can
tell you, that I have NO REGRETS.

The call ended with her telling me that I was mean, bitchy, and jealous.
I replied, “I’m so glad that you said that, because now I am gone from
your life.”
She then taunted me with, “Oh yeah? Yeah..yeah..yeah…”
My final words were, “You just watch me. You just watch me.”

So Saturday and Sunday night, I spent two surreal evenings, decorating her assisted living
apartment. Can you imagine how difficult that was for me? I had ordered
special hanging hearts (hand painted) that said, Betty’s Place and Sweet
Dreams-by her dresser. (I hope she feels bad when she sees them, but she
won’t.) I was numb to a degree, as I put things in place for her, and
weepy and distraught earlier in the day, last night, and on the way home. (I wasn’t
sure I was strong enough to finish the decorating, but thank God, I somehow was.)

She has hurt me for the last time. I will not be there to hear her
reactions or complaints. I am done! I can’t do anything right, and I
think the reason that I have perfectionist tendencies, is because nothing
is ever good enough for her. Nothing.

She made me feel guilty for trying to surprise her. I was thinking of
her–picking out the color she loved, and fixing everything so
beautiful. But what do I get in return? Cruelty!!! I cannot do this
anymore…

I simply cannot take anymore. It is time for my brother to step in and
take over. She is ruining my health (mental and physical), my marriage,
and my life. All he has to do now is get her to her doctors, and buy her
personal items-the least he can do. If I am going to survive, I must get
away from her. I do not intend to go to her funeral. The hurt is too
deep. I have had it.   (End)

So there you have it. I finished decorating Sunday night. It took us till 11 p.m. We were working as fast, and as hard as we could. I received a couple of irate messages from her on my cell, during that time, asking when I was going to show her the room (If Ever.) Once again, I felt the incredible pressure that she has put on me all my life. (I had decided to let my husband show her the room, after I left.) The last thing I did was unpack her clothes, and place them in her closet. As I realized the time to leave was nearing, I kissed her blouse, and blew a kiss into the room as I left, thinking, “I’ll always love you.” (But wondering why I was not worthy of her unconditional love and kindness.) I closed the door behind me, and it was over. But the pain was only beginning…

Please see other articles that I have written here:

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

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.

CATERPILLAR: Who are YOU?

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…

Please see other articles I have written here:

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

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

I guess I am getting the cart before the horse in my story now, but today was so painful for me, that I must write about it while it is fresh. I say it was painful, but it was also joyful. I guess you could call it a bittersweet day.

When I arrived at the nursing home today, my mom was sitting on her bed, eating peanut butter crackers. She smiled a happy grin when she saw me, and said that she didn’t think I would be visiting today, but she was so glad to see me. (Right off this was sad, because I told her yesterday that I would come this afternoon, but she had forgotten entirely.)

“I have some surprises!”, I said with a mischievous grin. I ran to the car to get my gifts. There were ordinary things like Kleenex, deodorant, chap-stick, wet wipes, and a new electric toothbrush, and somewhat exciting things like a new inexpensive watch (with an expandable wrist band that is still a little large on her thin wrist), 3 new gowns, and a robe. One of the gowns was black, with a pink high-heel on the front. Underneath the shoe it said, “GLAMOROUS.”  We giggled, and  I said, “Well if you can’t wear them on your feet anymore, you can at least wear them on your gown.” (She is forever asking that I bring her shoes with heels, in spite of the fact that she has broken her foot, leg, and hip lately.) I keep saying “no”, but she keeps pressing me. I guess girls will be girls–no matter the age.

After looking at the treasures, I wheeled her over to the retirement living area, where there is a very nice atrium, with beautiful plants and lots of tables. The contrast between this part of the facility, and the nursing home part, is night and day. (We are so thankful that we have this place to run away to.)

I fixed our little picnic, complete with a white tablecloth, and a battery operated rose that lights up and changes colors, when you place it in water. I knew she would be fascinated with it.  We shared strawberries and bananas with whipped cream, and wholegrain crackers with pineapple cream cheese. It was delightful! She ate every bite on her plate. She loves any escape from the nursing home food.

We talked and visited for awhile, and then searched the phone book for a local urologist–a true bonding experience. LOL! We are hoping to find the reason for her frequent incontinence, and hopefully some help for it. Unfortunately, the medicines that help with bladder spasms cannot be used if you have glaucoma. She has glaucoma and  macular  degeneration. We are praying that perhaps there is a drug that will not adversely affect her eyes. I want to give her hope.

Now for the sad part. After visiting with my mom for several hours this afternoon, I realized that she didn’t remember anything about our talk a couple of days ago, concerning the choices we have to make about her living arrangements. I was devastated. I have been told by the staff that she doesn’t retain information, and yet I had not experienced it as poignantly as today. The relief we felt the other night (after finally  being able to discuss the options with her), evaporated this afternoon in the hall, as I pushed her wheelchair by our favorite male nurse. She greeted him, and happily called out, “I’m going home in about 3 weeks.”(Chalk up another break in my already broken heart.)

All the time we spent making sure that she understood the options was for nothing.  She understood it perfectly at the time, and made appropriate intelligent remarks, and that is what is so maddening about dementia. (She seems to retain the things we wish she wouldn’t, and forget the things we wish she would remember.) The mind is incredibly complicated when something goes wrong.

As I left the nursing home this evening, I was in a mindless place. I truly walked in a daze through the parking lot, trying to understand and grasp what I had just experienced.  As I talked with my husband from my car, I broke down. I wondered how much worse this memory loss was going to get, and how quickly it would progress. How long would she remember me? Tears filled my eyes, and I cried with occasional loud sobs. It was just too much. It is almost worse than a death, because it is a slow, painful, agonizing process, as you watch the person you love evaporate bit by bit.

On the way home, I had to go by Walmart, and pick up some of my many meds from the pharmacy. Feeling as I did, I wasn’t at all in the mood to be sociable. I was still fighting back the tears.

But an adorable, chubby-cheeked little girl walked up to her mother, who was standing in line in front of me. Her face was captivating, and she seemed filled with all the wonder and excitement of living that I have lost. I asked how old she was, and she proudly held up 4 fingers. I was surprised, because she was quite tall. Her mother shared that her 5th birthday was Saturday, and then the little girl asked her mother to show her (by counting on her fingers), just how many days that would be.

“How exciting to have a birthday so soon! That will be so much fun”, I said. (I was actually feeling a little thrill just watching her delighted face, that could not hide her sheer bliss.)

I was reminded that life goes on, in spite of where we are in it. Old people die (and sometimes young), and babies are born, and the rest of us are somewhere in between. And for all the bitterness that life can bring at times, it is also filled with simple beauty. And all the tragedies that it affords, cannot take away the inspiring moments.

I know that God made it this way, to give us a reason to go on living–to give us hope. In my better moments, I treasure this truth…

Please see other articles that I have written here:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Please see other articles that I have written here:

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

“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…

 

Please see other articles that I have written here:

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

A few nights ago, I ran across a song that ministered to exactly what I was feeling, and I used it in a blog post. Then I went to a friend’s blog, who very recently lost her husband, and she had used the same song. Maybe God is trying to tell those of us who don’t understand His ways, that someday we will see Him face to face, and it will be worth it all.

I want to believe that–I really do. Deep in my heart I cling to that truth, though there are days that the pain and agony of living is just too much to bear.

My mother’s dementia is getting worse, and there have been a couple of episodes lately that I will write about when I feel stronger. It’s all out in the open now, and others are well aware of it at the nursing home.  I just can’t fully talk about it right now. It’s too painful.

But tonight I was talking to her on the phone, and everything was completely normal, though she was frustrated and depressed, with being in the nursing home for rehab so long.

Suddenly she related something that had happened today, and how no one would believe her. She said that she argued with the CNA about it, and then everyone started asking her questions. They wanted to know if she knew where she was. (It was certainly NOT believable, but I knew that I needed to reassure her, and be her friend when she could find no other ally.) It doesn’t do much good to harshly confront someone suffering like this. You have to reorient them gently, because it’s too disconcerting to have everyone tell you that what you fully believe is true, isn’t. She believed with all her heart that it was true, and she was desperately trying to get someone, anyone, to believe that she wasn’t crazy. (It clearly couldn’t have happened, and I was once again confronted with how very serious this is becoming.)

As I listened to her, I felt that sickening feeling in the pit of my stomach, and that dizzy feeling in my head, and my eyes filled with tears. (This can’t be happening again, I thought, but somehow knew that it was going to continue, again and again.)  I calmly tried to understand the things that she was saying, and tried to reassure her that she wasn’t crazy.

We talked a little more, and I told her that I would visit tomorrow, and to call if she needed me. (I had just been with her last night, and she was very lucid.) She’s had great difficulty with the phone lately, but sometimes she remembers how to answer it. Cell phones are so complicated for the elderly. They don’t have regular phones in the room. Isn’t that weird???

After I hung up, I wanted to throw myself on the floor and wail loudly, but I didn’t have the strength.  So I ran downstairs to tell my husband, Rob, who really never knows what to say to me at a time like this, for truthfully, what is there to say? (Only God can comfort me lately, and even He’s not always successful.)

I have suffered painful losses in the last few years-both of my dads (my birth dad, and my stepfather from the age of 7.) They died close in time to each other. In a way, I died then too. I laid down my life, as I knew it, to care for my mom. I was obsessive about it. I thought that I had to keep her alive. I was sure that I alone would be to blame, if she died or got really sick, or injured. And so I never slowed down, trying to be everything that she needed, and do everything that she needed.

And even though I did the best I could, I couldn’t stop this from happening. My counselor said that I needed to understand that I couldn’t give her mortality. Still, I tried to make things okay. But I can’t make them okay anymore. I don’t have the answers, and it’s all spinning out of control. I’m not just losing her-I’m losing her in a frightening way. She goes in and out, and I’m clinging to what’s left of her on any given day. I have watched her scream out in physical pain in the ER for 6 hours straight, after breaking her hip, and yet she has been so strong emotionally, through all that she has suffered. (Too strong in a way.) I know that she grieves for all her losses (her husband most of all), and yet she goes on with determination. But she is very, very frustrated now. She has been away from home too long, and she feels so confined in her wheelchair, and she keeps trying to get up, when they’ve told her it’s not time yet–not without supervision. And we’re all afraid that she will fall again. But she can’t understand. Sometimes she is just being stubborn, but many times now, I think she doesn’t remember what they’ve said, and she just doesn’t know the dangers. She is walking some in therapy with her walker, but they don’t allow her to walk in her room right now. It’s too soon. She is angry about being there so long, she is worn out, and disgusted with the way her body and mind are betraying her.

I can’t control this. Like so many things over these last 3 years, I’ve had to realize that I can’t make it all work out. I can’t fix this. I desperately wish I could.

I try to trust the Lord with the outcome, but I am fearful and exhausted. Every day it’s a different crisis, and every day I wonder how much more I can take.  (And how much more she can take.)

And so lately, I sing this song in my head, and try to remind myself that even though I don’t understand His ways, they are so much higher than my ways, and I have to trust Him. I have to let go now, and let Him work this out. It’s so hard to let go, because I have taken care of her like my child. I have bonded deeply with her, and if I could, I would protect her from every danger and threat. I would hold her, and never let her go. But I can’t.

I’m grieving already–life is so hard. Please God comfort me. Comfort her. Help us make the decisions that we need to make for her best care. Guide us. Let us feel your presence in this dark hour…

Please read other articles that I have written here:

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

How much can a heart break until it can’t break anymore? How much sorrow can a person endure until they are numb? Apparently, I haven’t reached that place yet, as I am still crying. I have been strong beyond my ability. (Mainly because it wasn’t my ability, but the Lord’s, that has brought me this far.) Can I trust Him to carry me further still?

There have been no mountaintop experiences in my life for a long time-just valleys that seem to never end. They say that it’s in the valleys that you develop character. (Whoever they are.) I wonder how much pain they have survived, to know such a thing, though I do believe it’s true.  I must be full of character by now, and I’m so ready to cry “uncle.” (It’s an expression for saying “I give up–enough’s enough.”)

But how much is enough? How hot does the fire get, before you run screaming out of it (or worse, are consumed by it?) How lonely do you have to feel, before someone hugs you tightly and says, “It will be okay.”  (Even if you know it won’t.) How invisible (in your pain) do you have to become, before you completely disappear?

Tonight there is another break in my heart, or perhaps it has shattered like broken glass, in a million pieces. (But I suspect there is still more to break.)

I went to the nursing home this evening, and I found my mom sitting on her bed, eating her dinner. She looked very exhausted and tired. There was a strong odor of urine in the room, though I didn’t mention it.

I had tried to call her all day the day before, but had not been able to reach her. I was not able to visit yesterday, as I was not feeling well.  And I had tried all day today as well. (I go at least every other day. Sometimes every day, when I am able.) After calling and calling, I realized that she could no longer figure out how to answer the phone. My brother had left a cell phone for her, and had painted green where the “answer” button was, and red where the “hang up” button was, but the paint or marker had worn off.  So now, she would fumble with the buttons, completely frustrated, trying to answer, with no success. And I would begin to worry when I couldn’t reach her.

This nursing home does not have a phone by the bed, so if you want to reach the outside world, or talk to your loved one, you have to have a cell phone. Cell phones are extremely difficult for the elderly, (and even sometimes for the not so elderly.)

(I have to back up a little to tell the story.) My mom had a fabulous roommate until Saturday. Sophie went home on Saturday morning. It was a very sad time for her and my mom, as they had grown to love each other. They were allies against the nursing home world, and together they could overcome almost every obstacle or trauma. Truly it was a lovely friendship–one made in heaven. On the day she left, my mom requested that Sophie play her German music one more time. My mom had become very fond of it.

Sophie always provided atmosphere in the room. On certain nights, you would think you were in a 5-Star Hotel. Sophie even had a fish, swimming in a serene aquarium, and at night before bedtime, she would dim the lights and play beautiful classical music, or her German songs. (She was from Germany, and had a lovely accent.) It was a charming atmosphere for a nursing home room, while Sophie was there.

Just outside the window, Sophie’s daughters would fill the feeders with bird seed, and the birds would quickly eat all of it in a couple of days. It kept my mom and Sophie entertained, watching the birds that flew in daily.

On the same day that Sophie left, Addie arrived. Addie is a large, very confused, and aggressive woman. It was a total culture shock after sweet, precious soft-spoken Sophie. Addie immediately wanted the blinds closed. She could not figure out why she was there, and she cursed under her breath every moment. When I would try to visit my mom, I would often pull the curtain, so that we could talk in peace, but Addie would pull it back abruptly, without warning. She ordered me around, and I did numerous tasks for her, and she kept asking where the remote for the TV was. Sadly, I had to tell her, that they had said that the maintenance man would bring one–but he never did. Not in weeks. (This has really been hard on my mom, who has a broken hip, and can’t get out of bed to change the channel.) Since her eyesight has grown worse, it doesn’t leave anything for her to do, but lie in bed. She tries to read the paper, or a magazine now and then, but she can’t see well enough anymore, to read for very long.

Addie must have asked 20 times in 30 minutes, about the remote control. Then she wanted to know a million other things…over, and over, and over again. I was nearly crazy, so I know my mom was. She has to live with this 24/7. Even in the night, Addie will curse and say, “I can’t wait to get out of this hell hole. Or, “Oh, God.” (ETC.)

My mom had broken her right foot and her left leg, and had received therapy, and was about to go home, when she fell one night, on her way to the bathroom, and broke her hip. Now, after a painful surgery, she is once again on another regimen of physical therapy, and this time it is very painful, and even more difficult. In order to get through it, she has to have her rest.

Day after day, we all answered Addie’s questions, even though we grew increasingly more frustrated.  Finally last Sunday, we decided to complain. My favorite nurse (a male) was filling in on my mom’s hall on Sunday afternoon. He usually works on the other hall. When I arrived, much to my surprise, my mom was in her wheelchair, putting on lipstick (something she has not done in weeks), preparing to go to complain with us. (I thought this was very brave.)

I told the nurse very politely, that the lady was driving my mom crazy, and that I felt she wasn’t getting any rest. He said that he would submit a complaint, and for me to check back. On Wednesday, I went back and asked him if he’d heard anything, and he said that they would never tell him anything, bu that they would contact us. I told him that I had not heard a word.

The CNA, who often works with my mom, agreed that Addie was driving everyone crazy, and said that my mom had finally gotten her told a few times. (I guess in her frustration, she couldn’t take anymore.) The male nurse said that he and the CNA (Certified Nursing Assistant) would file another complaint. He then told me to check with a nurse (I’ll leave out her name to protect the innocent) who would be working on Friday from 2 p.m. through the entire night. He indicated that if I complained again to her, that should take care of it.

So that brings us back to this evening (Friday.) As I said, I walked in and my mom was sitting on the side of the bed, finishing her dinner. She told me that Addie had put on her (my mom’s) clothes, had wet them, and put them in a bag in her wheelchair. (So that explained the horrible smell when I walked in.) My nose led me to the bag.

By this time, I’d had it! I was glad that we had come to complain again. This was just too much.  (Addie was in the dining hall at this time.) When the nurse came in, we explained what had transpired all through the week, as well as what I had just found.  

She said, “You mean that Addie is putting on your mom’s clothes, and then wetting them?” I answered, “That’s what she said, and you can smell the urine.” She agreed, and offered to wash the clothes, as I cleaned my mom’s wheelchair, and Rob gathered up the rest of her clothes to take home and wash. (But none of us could understand how Addie could possibly fit in my mom’s clothes.)

The nurse left the room, and I put away some gowns and clothes that I had brought for my mom. I finished cleaning her wheelchair with antibacterial wipes, and also cleaned her bedside tray. About this time, the nurse returned and asked to see me outside.

She and the CNA were waiting by the entrance, and the CNA proceeded to tell me that my mom had wet the clothes. (This took a moment to process.) “I’m so sorry”, I apologized. “I believed what my mom told me, as she is not one to lie, and she seemed so sure about what had happened.”

We still agreed, however, that regardless of who wet the clothes, Addie was still a problem, and the nurse agreed to file another complaint.

The CNA told me that my mom was getting worse mentally. She said, “She’s in and out.” I told her and the nurse, that my mom had been a brilliant woman all her life, and had lived completely independently until now. I assured them that while she did have a little confusion and some minor temporary memory problems now and then, that she had never experienced the kind of confusion she was now experiencing, after the surgery. I also told them that for the earlier part of this week, she seemed completely clear to me, except for one or two remarks that made no sense.

They said that they would be having her evaluated by the psychiatrist on Wednesday. I asked if I would be told what the evaluation was, and the nurse said that I should call the unit nurse early Wednesday morning, (early being before 7:00 a.m. when the psychiatrist would come) and tell her I would like to speak with the doctor. (More runaround probably. I won’t hold my breath, that I will actually learn anything, but we’ll see.)

Rob and I had been on our way to dinner, on this Friday evening, but things had gotten so complicated that we weren’t able to go. When I got back into my mom’s room, she asked if she could get in her wheelchair, so that we could go for a little walk. (I could not say no–dinner or no dinner for us. I just could not leave her right now.) So I said that would be fine, and called for the CNA to transfer her to the wheelchair, as she can’t stand right now, and it is a tedious process of moving her legs and body in a certain way, to get into the chair.

I went out into the hallway to wait. I found a corner nook, sat down with Rob, and began to cry. It was just too much. I was still trying to process what I had just been told, and the sadness of it all.  The tears were streaming down my face so much, that I had to go to a nearby restroom and get some tissue.

In a few minutes, my mom was wheeled out into the hall, and I tried to hide my tears, though she noticed I was sniffling, and asked if I had a cold.  (I do–a 3 week cold, so that was no lie.)

I apologized to Rob about dinner, and asked if he wanted to go eat alone, or do some errands. He said he would call his mom, while we walked. (His mom is in Assisted Living in Central Florida.)

So Betty and I escaped (at least for a moment.) I took her through the double doors that led to the atrium, where the privileged lived. It was a large open area in the Senior Living residence area. We had visited it before, to see how the “other half” lived. What a contrast between the nursing home, that was tucked away in the back of the building, and the affluence of those who lived in the retirement apartments.

We had a very good time. I told her that we were going to run away. We laughed about that, and wished we could. An elderly woman waved to us from her window that overlooked the atrium, and we waved back. We looked at the bowling area, the pool table, the puzzle area (where 3 dimensional castles had been built, as well as what appeared to be the London Bridge.) We wheeled right up to the fancy dining hall, and then right into it. The lights were dimmed for the evening, and there was only one worker in the back, who seemed to ignore us.

“Wouldn’t you like to eat in a place like this every night?”, my mom asked. (It was a far cry from the nursing home residents’ dining area.)

Then we found the pool. I had always smelled chlorine in the atrium, but never saw a pool. Finally, I reasoned that perhaps they didn’t have one, since the whole place was senior citizens, and maybe it would not be safe. But we found it, just off the dining hall. It was a very small rectangular shaped pool for swimming laps, or doing aquacize.

The sun was still up, so I wheeled my mom outside into the fresh air–something she has not experienced much of since mid June. We walked completely around the building, a very nice long distance, and then back into the front entrance of the apartments. Sadly, we made our way back to her room, but we were happy with the nice walk we’d had, and I made a mental note that I could take her to the atrium sometimes, and we could have our snack there. (I don’t think the people at the retirement apartments would care, and it would be a nice change of scene.)

Once back in the room, she wanted a soda and some crackers, so we sat together at the foot of her bed, and ate peanut butter and cheese crackers. I bring lots of snacks for her, as she has lost 30 pounds since coming to the nursing home (and she is always giving them away to her favorite helpers.) Hey, it doesn’t hurt to bribe the best ones.

So finally, at 8:45 p.m. we said good night, and I kissed her goodbye.

Rob and I decided to go ahead and eat out, and enjoyed a nice dinner (at 9:00 p.m.) and then on the way home, my cell phone rang. (I believe she said it was the nursing home Director Of Nursing.) She was very brash, harsh, and overbearing. She said, “My nurse told me you were upset.” I explained to her that I was no longer upset, but that we did have a problem with my mom’s roommate. She told me that there were only 2 “female beds” available, and they expected a lady to return from the hospital to one, and that the other one was in a room with a lady that sometimes “cried out.” I tried to explain to her that we didn’t want to move my mom, as she had the best room in the nursing home, with a view of the golf course, and lots of bird feeders outside her window. (She said that she could not move the other lady without her family’s permission. And that she (Addie) had previously been in the room with the lady that called out, and her (Addie’s) family had asked for her to be moved.)

At a complete loss, I asked her to please not move my mom to either of those rooms, as she was happy with her bed by the window, (it was just that the other lady was driving her crazy.) This woman was not compassionate or kind. She would not let me say a word, and I finally gave up in total exasperation, (deciding that maybe the devil we knew, was better than the one we didn’t know.)

I asked if Addie was due to go home anytime soon, and she said perhaps in a week. So that was that. I slammed my cell phone shut. So this was the culmination of all those complaints, trying to follow nursing home protocol. I was in the van, and the tears began to fall again. Tonight I was finding the world just too cruel, and even though I have been extemely strong through all this, there are those days when it’s just too hard. And so I cry, and for a moment, I let myself experience the horrible reality that has become my life. (And most importantly, my mom’s life.) And then I dry my tears, bandage my breaking heart, and go on, afraid to even think about more than the next few hours…