Not Nearly Normal

As told by Terry:
I was standing at the partially opened front door and saw Milda and Lizzie standing outside. I said, "Hi Milda," and then she rang the doorbell. I thought that a bit odd, but maybe her reflexes were a bit slow today. They both came into the house, and Lizzie asked me, “Is that YOU, Twin Sister?” When I told her no, she asked, “Where IS my Twin Sister?” I told her, “She’ll be home shortly.” As she walked through the living room to the kitchen, she told me “You don’t belong here.” Nonetheless, I reached for her tray of newspapers and magazines and handed her some of them at which time she exclaimed, “Oh THERE they are!” She walked directly to her favorite seat in the house, which is at the kitchen table, sat down, and started her paper browsing. Milda left. I brought her more of the papers, and she said, “Oh hi Honey” and sat there talking to herself for a while frequently asking, “Where is my twin sister?” She seemed satisfied for a few minutes with “she’s on her way home” before she’d ask the question again. She appeared content.

Enter Twin Sister.
Lizzie seemed OK with seeing me when I greeted her at the table, but she would not stand and give me a hug. Seemed like AD Lizzie to me! She started in with, “Are we going out?” Yep … AD Lizzie to me! I got comfortable for the evening, poured myself a glass of fine red, and laid on the sofa to relax a bit. All the while, my sister sat at the table,talking her usual gibberish with statements such as, “They shouldn’t do that to my Twin Sister.” “She didn’t say that did she?” “Did SHE tell you that?” Seemed like AD Lizzie to me all right!

Now Milda had told me she was “independent” about getting dressed this past week. So I encouraged her for her early evening bath, and Lizzie was OK with that idea. However, she showed no clue as to how to undress for her bath. I will say she screamed a bit less than usual through the process, but once out she did not know how to even begin to dress herself. Seemed like AD Lizzie to me again!

Back at the kitchen, Lizzie began asking about going out for dinner. I showed her the pizza I had bought, and she commented, “Oh I can’t eat the whole thing” as she began preparing herself to dive into the unbaked pizza. I said, “Whoa there … in a while, OK?” When it WAS time to eat, Lizzie had a difficult time eating by herself tonight, and I even had to feed her to get it all in her tummy. She kept saying things like, “I’m not stupid you know.” “I can’t eat any more.” “I’m not in the NFL you know.” “I’m not hungry.” She seemed like AD Lizzie to me throughout the meal.

Once we got her early evening medications down her throat, Lizzie is now relaxing comfortably at the table with a pen in hand as she is folding and writing in papers. I am sitting nearby, and every time I cough, she gives an exaggerated startled response and asks, ”What was THAT?” I’m surprised she even hears it.

I tell the folks at the group home to let her do this, but I never see any newspapers there for her. I sometimes take one over, and even then in a few days it is gone. They like to keep the house very neat, but geez … Lizzie can stay busy with this activity for HOURS and be very very happy doing so.

Last night I did lots of research online about what Milda had told me about Lizzie showing a change in her independence. What I learned is that this type of positive change is common; lasts a few days; might preempt a significant decline in cognitive functioning.; and is called a “nearly normal” episode. If this is all true, surely I missed these good days, which I feel sad about.

But you know what? I love Lizzie so much, and I was so happy to see her tonight that I don’t care where she is in this journey of hers … I’m just glad she’s home with me for the weekend!

A Good Change

My heart is pounding hard and fast.

I just received a phone call from the group home with a report that my sister's behavior has changed in that she has become more independent this week. She is dressing herself, feeding herself, and putting herself to bed. She is happy and has not mentioned me much at all. I can't help but wonder WHY? She DID have a great weekend here with me ... WHY?

Have you ever heard of what is called the "last hurrah"? You know ... the last few days prior to a person's death from a debilitating illness when the patient seems to be doing really well ... so well it's hard to even imagine they are sick. Then they die.

Is this what is happening to my sister? Oh my goodness ... I am sooooo scared and filled with so many emotions right now. I'm afraid to write everything I am thinking ... I don't want to jinx anything. Then again, I know I can't do that because God is in control I am planning on having her here with me this weekend, and now I can hardly wait until tomorrow afternoon. Oh dear!

Prayer time for God's grace and mercy.

Do's and Dont's

Lizzie had a wonderful weekend here, and I am SO happy about that! Yesterday we strolled around Lowe's basically in search of a new paint color for our kitchen, and then I took her to the salon with me. She was having SUCH a good day that I asked her if she would like to have her hair shampooed and styled. To my surprise she said, "Sure, why not?" OMGoodness! She was like my ol' twin sister who always loved to be pampered almost as much as I do! She walked out looking absolutely adorable with short bangs and a nice layered chin-length cut.

The group home has a hairdresser come in every now and then to cut everyone's hair which is a convenient way of keeping the ladies groomed. Trouble is, they all get the same butch-like cut, and that just isn't Lizzie. Lizzie is a fashionista like her sister, although again ... to a somewhat lesser degree. Nonetheless, I have always done my best to keep her looking good, in-style, and well-groomed.

We came home and did a steak BBQ on the patio. Lizzie takes a very long time to eat her food these days, and tonight was no different. She seems to get so distracted with her environment that she just can't get the task done without aid in the form of regular prompts and/or actually putting the food in her mouth. I know they feed her at the group home in order to get the event completed in a reasonable amount of time, but I would prefer she do it herself as much as possible.

Lizzie used to have exquisite table manners, and I NEVER hesitated to take her ANYwhere for a meal. Now her skills have declined such that she doesn't even hold a fork correctly. I see her putting food on it with her fingers, and sometimes even eating with her fingers so as to avoid the fork. Using a knife is a skill long gone. These observations break my heart because the scene in and of itself is so barbaric in many way I wonder where can it go from here. Lizzie doesn't like it when I try to slip a fork or spoon into her mouth. She screams, "Stop it!" and yet I just don't know of another way to get her to eat a complete meal.

I think ahead to our traditional holiday gatherings which are just around the corner. Watching Lizzie eat is kinda gross these day, and I can only hope our family of friends will understand.

Smells Bad

I went to pick up Lizzie yesterday to bring her home and to spend the night with me here at OUR house. I walked in to many aromas floating around the group home. I'm not one for too much Filipino food, so the shrimp and rice was somewhat unpleasant for me. Then again, maybe it was the odor of another woman's colostomy bag that overwhelmed my senses. Well, let me be honest ... it WAS the bag that needed to be changed that I found most offensive. All three house residents were sitting at the kitchen table eating lunch with this odor hanging over the room.

Now I don't know what is wrong with me, but I just couldn't make a fuss in front of all of them ... especially in front of Julie who wears the bag. Surely that strong of a smell is an indication that the bag needs to be changed, and NOT changing it ... is that neglect? At the least, it's just plain LAZY. I DON'T WANT MY SISTER LIVING IN THIS ENVIRONMENT!

So what should I do? If I tell the caregivers, they will think I am complaining and probably won't do anything differently anyway. If I tell the Provider (OWNER/BOSS), the caregivers will be mad at me for reporting them. Either way, the caregivers will be mad and my fear ... ? UGH! This is TOUGH. I MUST report it to the Provider. No one deserves to sit around a kitchen table and have to smell that ... NOBODY ... and not under any circumstances.

Not long ago, while I was in the house, the caregivers WERE changing Julie's bag in her back bedroom. The order was unbelievable, and I don't know how I did not vomit. I commented, and the caregiver closed the bedroom door which helped somewhat. OK ... now I know these things need to be done ... but NOT under circumstances that EVERYbody has to smell it. On that day, I asked Milda and Rhoda how often they change this bag, and every replied "Every 3-4 days." WHAAAAT? I don't think Julie has an advocate, so maybe I will have to be that for her.

I will tell Elizabeth tomorrow.

An Early Check-up

I decided to check on Lizzie early this morning at the day-program at 10:00. When I arrived she was argumentative with the staff and quite drowsy. They reported to me that she could barely stand up for being so sleepy when she arrived at 9:00, and that they had to "walk" her to keep her awake. I DID NOT LIKE THAT REPORT!

Knowing only that I did not know what all this meant and that I didn't like the sounds or appearance of it, I brought her home with me. Even though it was challenging to get her into the car peacefully, once in and listening to the music she was fine as I expected. She repeatedly asked me if we were going to dinner. GEEZ I hate that question! How many times do I have to say "no", or "later", or "not today", or "you just ate breakfast/lunch" ? UGH!

Once home, she immediately went to her place at the kitchen table and began sorting through the current newspapers. I gave her some water, a snack, and she seemed most content at the least. WHEW! After about an hour, I noticed she perked up and became "more awake" so to speak. In the meantime, I had phoned her caregivers and shared what I and the trainers at Choices had observed. We agreed I should call the physician who prescribed her meds and brainstorm, but I held off on that idea to "observe" my sister's behavior. attitude, emotional state, and general well-being. After a while, I phoned Elizabeth back and asked her if we might try to get Lizzie in bed an hour earlier to give her an opportunity to sleep off the night-time medications before starting her day. We agreed to try that, and she promised me she would begin tonight.

Lizzie became restless after a few hours and wanted to go somewhere. She kept mentioning "the others". Since she seemed to be her normal self again energy wise, I decided to take her back to Choices. In preparing for the ride and to finish the rest of my errands for the day, I put a cherry drink in my purse to relieve me from stress in the heat ... HA HA. As we were walking out the door to the car, I felt something wet on my foot. Lo and behold the drink was leaking in my purse so I told Lizzie to come back indoors so I could check my bag. My drink had soaked everything in my purse, and so I wanted to clean it all up and start with another handbag. As I was doing this, Lizzie stood at the front door and in a whining voice continuously cried out, "Hurry Honey ... don't you know I am waiting?" over and over and over again. I don't know HOW I tuned it out, but I did. It felt like eternity had passed by the time I was ready to go. Once in the car, Lizzie was jamming to the music again.

She did not want to get out of the car initially when we arrived at Choices, but coercing her to do so definitely took less effort than usual. So her new med schedule is calming her mood swings significantly after the sleepiness wears off. Lizzie got settled inside with the gracious assistance of the workers, and before long she had forgotten I was even around. THat's when I slipped out the door.

A Day Visit

I went to see Lizzie at her day care program yesterday. It was 2:00 and she was already sitting in a "waiting" chair at the front door ... waiting for someone to come pick her up and take her to dinner. When she saw me, the first words after her usual greeting were, "Are we going out for dinner?" This seems to be the #1 thought obsession for her. She says it soon after breakfast; soon after lunch; and sometimes soon after dinner.

Choices has expanded it's facility, and so I asked for a tour. I also asked to use the RR. While in there, I could hear Lizzie saying, "Where is my sister. They took my sister away. That's not nice." She kept repeating it and as she did, her voice became increasingly agitated.

Her trainer was able to calm her down ... God bless Sonja! She went back to her chair at the front door, took out her blue folder, and sat quietly waiting for her ride home. She seemed to forget about me being there ... the old "out of sight out of mind" idea ... and so I snuck out the door without saying good-bye so as not to agitate her again.

Does anyone ever get used to this?

Not Happy

I don't like what I saw tonight.

All day today I kept hearing the voice inside my soul telling me to go see Lizzie this evening ... to spend time with her to see how she is doing at the group home in the evenings and with her bedtime routine.

When I arrived, she was sitting quietly on the sofa next to Judy and was fidgeting with her T-shirt. I put my face right in front of her and her eyes lit up as she exclaimed, "Twin Sister is that YOU?" "Yes, Lizzie ... it is me!" We hugged as I stoked her head with my hand. I sat down next to her and began to talk with her, but she did not respond to anything I was saying with logic or reason. Nothing made sense as she continued to fidget with the T-shirt. She was calm and appeared content ... dare I suggest oblivious to her plight?

I have a cough, and every time I coughed she acted startled and asked, "Are you OK Twin Sister?" When I suggested we switch the TV channel to old movies, when the movie appeared she gasped and said, "OH I know THIS one!" When her eyes began to close indicating a tired Lizzie, I suggested she go to bed. "Here?" she asked. I said, "Sure, why not?" and that was that. In less than five minutes she was in her bed.

Lizzie appeared to be void of emotion tonight. She had no "ups" and no "downs" like she has had in what seems to be forever. She just "was". I wonder if the new medication prescription is too much for her, or is she sinking further into the grasp of AD? I know I must be patient and give the meds time to "set in" and give Lizzie time to "adjust". I am told she is doing well at her day program and that she appears happy more than she used to. I will check on her there tomorrow.

I tucked her into bed just like I always used to do, and as she rested her head in my arms, I prayed our prayer that we used to say each and every morning of our lives together until AD robbed her of that ability, and tonight I added a humble request for God's sovereign grace.

Dog Poop

Yes, the unthinkable.

We have an old dog that is beginning to experience bowel incontinence every now and then. So today I found one chunk of poop in the living room ... just one. I thought that odd because usually I find 3-4 chunks when this happens. Oh look! Here's another one on her bed mat. OK, that seemed better although I would have thought I'd find more.

I did what I had to do and moved into the kitchen to put clean dishes away. Lo and behold ... there in the clean corning ware sat 2 big chunks of dog poop. Now I know the dog didn't put it there. The mere idea that Lizzie had found them, picked them up with her bare fingers, and placed them in the dish was abhorring to me because I am certain she didn't wash her hands afterwards. My first instinct was to scream and rant, "What are you thinking?" Then I remembered ... she isn't! Lizzie's brain cells are dying, and so she has minimal if any common sense. She would never in a million years do something like that before AD crept into her world. She would have called me. "Twin Sister," she would have said. "Hazel pooped in the house." Today she never said a word about it.

My Mail Girl

Ever since Lizzie has been with me FULL time in 1995, her favorite task has been to "get the mail." Not a day went by that she wouldn't get her mailbag and head down the driveway or walk to the community mailbox in this neighborhood we live in now. Sometimes she would take a stroll around the block on her own ... swinging the bag as she walked. It's been a long time since she has thought about the mail, so I was shocked when she asked if she could go get it this morning. Today, however, I went with her. I gave her the choice of just going to the boxes or taking a walk around the block as well. She chose the walk and so walk we did. It was so wonderful to see her smiling and hear her laughing as she said, "This is really fun, Twin Sister."

Lizzie has moved on today. She was picked up by her caregiver, and they are off to a party that includes dinner and a band for an 80th birthday party. She was dancing down the sidewalk as she walked to the car with Milda. As I watched her, I thought, "Lizzie has a new life with new people and lots of activities that she loves." While I've been told she talks about me a lot, she doesn't express "missing" me, and when she is with Milda, I can see she doesn't. That's OK. I want her to be happy and safe above all else in her journey.

Finding A Group Home

Believe me ... it ain't easy and it takes time! LOL

I would suppose each state has its own process and also that there are similarities state to state. In Nevada, the process begins with the state case worker assigned to the client/consumer (Lizzie in this case). He sends out what is called a provider/voucher "call" to all the group homes in the area describing the consumer and asking for a response if the home is interested in being interviewed (by me and Lizzie) to have the consumer live in that specific home. There are dozens of such homes in this area that provide residential services for the disabled. Our case worker described my sister as "high-needs" and being such, only 6 providers responded to the call. WOW ... what does that tell me ... uh huh ... not many want to actually work for the $5K/month the state reimburses per consumer.

When I toured the group homes, I rated them according to cleanliness, a home-like feel that incorporated furniture in the main living areas, temperature, a description/schedule of meal prep and group outings, smiling and active residents, and sufficient number of hired staff actually in the home on a 24/7 basis. I didn't know all of the questions to ask at the time, but thought I did an OK job at the interview process. One important factor I learned is that some homes are agency run vs. privately owned; and some are host homes vs 24/7 homes ... BIG differences.

The first person I interviewed (and did not see the home) was what seemed to be a wonderful woman who ran a host home which means that there is not an awake staff person during the night. I felt Lizzie needs someone who will be available to help her during the night when she awakens to use the toilet. With the owner's bedroom on the other side of this split-plan home, I did not think that she could provide the services Lizzie needs at this time.

The first home I visited was terrific; I could have seen myself living there if need be; and I would have signed on the spot for Lizzie to live there except for the fact that the other two residents were both teenage boys. Although both are developmentally challenged, I did not believe Lizzie would have much in common with them on which to build a connection of some sort. The man who ran the home was so kind that he took Lizzie for trial visits to the home before I made the decision to keep looking. That was the post I titled Sad Eyes.

The next home was clean enough and the staff friendly enough, but was furnished sparsely ... something I don't understand in light of the funding to support these homes. It didn't feel "warm/cozy" and home-like.

House number 3 was the pits, and I even told the agency that I wouldn't even let my dog live there. It was dark, dirty, dingy, depressing, and understaffed.

The next house was a dream come true, but very far from where I live. It was new, very much resembled our home, was in a neighborhood like ours, and the woman referred to my sister as "she's like a mother ... she needs to be nurtured and loved." Lizzie would have had the master bedroom with her own private bath. I loved this group home.

The last home that replied to the vendor call is a nice home within 20 minutes of our house. It is run by Filipino people, and the home is immaculate. Lizzie has been the first resident to live there, and so they are in the process of making it a home for her and the next person who will move in next week. The lady who runs the home is a registered nurse, and that was a major factor in my decision to try Lizzie in this home. Lizzie is bathed twice a day, socializes with the residents at the other group home run by these people, and is treated as family with loving care and respect. I am very happy with this group home.

The choice of any group home placement is not carved in stone, and I can pull her out at any time I see something I don't like that isn't resolved. I almost did that once already. One important piece of group home promises that is not true is that these 24/7 homes are not necessarily really 24/7 in that homes promise awake staff during the night-time hours, and the fact is that the staff sleeps at night. This is because (at least in this home) the care giver is working around the clock. I don't really like this because it was my understanding that the "shifts" take care of the residents. I fear that the 24 hour care giver will burn out just like I did ... we ALL need sleep. When I look at all the factors and the BIG picture, I am watching very carefully to see how this factor plays out as Lizzie's needs escalate.

I've been advised to pay close attention to everything, and that is why I go pick her up on a day she can come over and spend the night. I give myself the royal tour when I go to the house without an invitation, and so far so good. Knowing myself as I do, I would find something about any group home to worry about ... after all ... no one will take care of Lizzie like I do.

The spending of the funds the group home receives for Lizzie is a major puzzle to me. For example ... she gets a mere $164/month personal spending money which is used for personal needs .... supposedly. I say supposedly because I found out the cost for cable was coming out of her personal spending money each month. This infuriated me because my sister doesn't even watch TV any more! It's clear that the cable is provided for the staff. Oh yes ... I fussed, and that is changed. Interestingly, my request that nutritional supplements be provided has been denied. Those items must be purchased by me. Go figure! I have requested to see an accounting for the spending of her $164 each month.

I've been told that the woman who cares for Lizzie now (24/7 ... UGH) will only be working until the end of this fiscal year, and then she will retire. I dread that transition for my sister, and yet wonder where we will be with all of this AD then anyway. Sometimes I wonder if we will even have another birthday together.

Saturday Morning

Lizzie's agitation was the worst I have seen it to date last night ... and then I remembered how she used to enjoy relaxing on the massage mat I had bought for her years ago. It wasn't easy coercing her to try it for a few minutes, but once she did ... wow ... she DID relax! After about 20 minutes, I asked her if she was ready to go to bed, and she agreed she was ready indeed. WooHoo! She slept 10-12 hours and is in a good mood this morning.

Being Saturday, I made her waffles for breakfast. Lizzie's meals used to be very structured by her choice. She wanted waffles on Saturday, some kind of pasta on Sunday, chocolate on Tuesday, Thursday, and Sunday ONLY. I often wished I had her control over the chocolate issue! HA! When Dad was alive, he used to come over and make her pasta on Sundays, and when he died, I did continue that tradition for her. None of these favorites on specific days matter to her any more though, and getting her to eat ANYthing is a chore although she isn't doing too badly with the waffles this morning.

I have SO much to write ...

Major Changes

I'm having to feed Lizzie by hand tonight. If I don't, she won't eat. She is fidgeting with her clothes, having conversations with "the committee", and making many trips to the bathroom. She is shouting, "I don't WANT to eat any more!" "Stop it!" "You're not being very nice!" She is rejecting the food so wholeheartedly that the spaghetti on her lap and the floor is thrilling the heck out of the family dog! HA! The group-home caregivers tell me this is what happens every single day.

Now I am hearing, "I can't swallow I tell you." There is nothing in her mouth. Stages 6 and 7 ... the final stages.

I wonder to myself, how many symptoms in all the stages of this disease is God going to allow Lizzie to experience? At what point in time does a family member such as myself say, "I can't watch this any more" and simply become absent from the week to week progression of it all?

THIS IS MY TWIN SISTER WHOM I HAVE TAKEN CARE OF FOR ALMOST 61 YEARS ... how can I be thinking such thoughts?

I am scared.

AD slowly robs us of our loved ones in teeny tiny steps like a thief in the night. Ronald Reagan called it "the long good-bye". What is felt deep down inside my sister's precious heart is different from what she demonstrates on the outside looking in. Her love for me will always be there, and she would show it if she could. Now, however, that love is more often than not ... unrecognizable these days.

Lizzie has been in her group home for one week now. She has been over to our house twice and both times slept over. She was upset and confused about not sleeping in her bed. She couldn't understand that her furniture was at her other house. Except for the hours she spent at the kitchen table folding papers, Lizzie was agitated and argumentative. This was heart breaking for me because I was so excited that she coming home that I was singing, "Lizzie's coming home; Lizzie's coming home!". It just wasn't happy like I had hoped.

Her care giver from the group home brought her over, and my sister told me that "she is taking very good care of me.". It's funny how Lizzie can be so lucid one moment and so out-of-it the next. I was thrilled that she recognized the care she is getting. I did place her in a different home than I wrote about in an earlier post. I was thrilled to find 3 good choices, and I based the final decision on location/accessibility to our home.

I am taking a vacation this week to recharge my batteries so to speak. I'll write more later.

Not Going To Be Easy

So during dinner, Lizzie actually had a conversation with me about the group home, although I didn't call it HER group home. I asked her why she didn't want to have dinner there, and her response was that she wanted to have dinner with ME. I asked her if she would like to spend the night there, and she said an emphatic NO because she wants to sleep in her own bed. I told her they have a brand new bed for her, and she said "that's not the same". I told her she could take her bed there, and she said "I just don't feel like it."

Sad Eyes

Yesterday Lizzie spent the entire afternoon at her new group home (as a trial/introduction), and the reports that came back to me were positive. I was told that she sang and danced to MTV with the other residents; talked and laughed with her assigned staff; and enjoyed the Port-of-Subs outing although she preferred to take her lunch home and eat it there.

When she returned home, her first words were "Well, are we going out to dinner?" and the nightly discourse about that topic began. I simply said, "No. It's time for your bath." We went back and forth on that a few minutes until she conceded with "Well, what are you waiting for: Christmas? Let's take a bath!"

This morning her usual SLA trainer came and took her out for only an hour because she was scheduled to return to the group home for the day. When she returned from her Walmart excursion, once again, "Are we going out for dinner?" Lizzie has no concept of time whatsoever!

Her new provider was here ... I'll call him Dino. She was very kind in her greeting, but did not want to leave the house without her "twin sister". I walked her out the door amidst her protest, and Dino encouraged me with "I'll be OK. As I watched them saunter down the walk, I watched her look up to him, they talked, and she walked to his truck. As they pulled away from the curb, her little face was looking at the house and she looked so sad it broke my heart.

I remembered the day back in 1960 when our family was staying at our grandparents' home for a family wedding. I was supposed to sleep in a bedroom and Lizzie was assigned the sofa. She crept into my room and said she wanted to sleep with me and of course that was OK with me. Our father heard us, and then our grandmother arose and INSISTED she sleep in the living room. Out of fear for a scene of domestic violence, I helped Lizzie get settled. I will NEVER forget the sadness in her eyes as we said good-night and the ache in my heart as I did so. I will go to my grave regretting that I didn't fight harder for that night. Her eyes in the truck reminded me of that night.

Around 4:00 this afternoon, Dino phoned and told me Lizzie agreed to stay for dinner at the group home. I felt so relieved ... maybe this will work! Alas, at 5:30 my phone rings only to learn that she wants to come home and have dinner with her family (ME!). OK, so home she comes, and again we begin the let's-go-out-for-dinner routine. Right now as I am writing, she is mad because I made her favorite spaghetti sauce for dinner and we are eating in.

This is going to be a roller coaster of emotions. Oh wait ... her she comes into the kitchen now. Lizzie is happy again.

Now I Remember And MORE

As I was cleaning the bathroom floor with Clorox early this morning, I remembered why I began the search for a group home. It IS the right decision for both of us.

AD is a disease which kills brain cells and is unpredictable, inconsistent, and degenerative in nature (MY observations at best).

Today I received an email from Lizzie's State social worker/case manager telling me her supportive living arrangements are being terminated. It read: "I received a letter from Trinity stating that they are no longer able to provide services to Lizzy as she has deteriorated beyond a point where they can justify training her."

Now I ask, who makes this type of decision? Supportive Living Arrangements (SLA) is the term for one of the state funded assistance programs for disabled persons. It allows the person to receive a benefit which provides daily living type training skills and social involvement within the community while living at home with family members. My sister has been granted this benefit for the past 4 years which provides services for 39 hours/month. She looks forward with anticipation to her weekend outings with her provider/trainer, and now somebody says she can't do that anymore because her cognitive skills are fading? OMGoodness! She can still process information in the moment to some degree sometimes, but does that mean we stop trying to allow her the dignity of trying new things for herself with assistance forever? Where is the respect for the aging? Where is the tolerance for those less able as days go by?

Oh that's right ... wait a second ... how could I not get it ... she's declining ... therefore ... not entitled any more.

I won't begin to discuss the population I see at the welfare office every year when I go down there to turn in her paperwork.

I'm angry, bitter, disappointed, frustrated, and just down-right hostile right about now!

Doubting The Decision

I am struggling with my decision to place Lizzie in a group home even though I understand this is not carved in stone. If it doesn't work out, I can bring her back home. My greatest concern is possible heartbreak on her part. Have you ever lost someone you loved through a breakup or divorce and hurt so much simply because you missed the person? That's the kind of heartbreak I am worried about. What will I do if she cries because she misses me as she did when I moved to Reno many years ago?

I found this online tonight. I was searching for helpful articles to reassure myself. It's from https://members.kaiserpermanente.org/kpweb/healthency.do?hwid=aa58684


Your options:

Care for your relative at home. Some caregivers also may want to think about part-time care at home with a health aide or a nurse or in an adult day care.

Move your relative into a nursing home or other long-term care.

Key points to remember:

People with Alzheimer's or other dementia need a safe, structured environment. You may be able to provide this at home. In other cases, long-term care in a center is a better choice.

People with dementia usually need more and more care as time goes by. At some point, your relative will most likely have to be moved to a long-term care center.

A care center may offer your loved one some people to talk to, as well as activities and outings. These social contacts may keep him or her active for as long as possible.

Caring at home for someone who has dementia takes a lot of time and work. It also costs money if you hire part-time help. Caring for a loved one at home also may take time away from other areas of your life. Every family has different needs and limits to think about.

By using adult day-care programs and part-time help—whether hired or through family and friends—you may be able to keep your loved one at home longer.

Remember that your own health, both physical and emotional, is as important as that of the person you're caring for.

Deciding to move your relative into long-term care is not a sign of failure in your role as caregiver.

I took Lizzie out for dinner this evening to a place that feels like home to both of us because of the familiar faces, smiles and hugs, and welcoming atmosphere in spite of potentially unpredictable behaviors. Lizzie is at home there, and as usual she had a great time. When Lizzie is happy, so is her twin sister!

I Didn't Know

"You or someone close to you will probably develop Alzheimer's at some point. More than one in five women and one in 10 men will develop the disease. A person who has Alzheimer's will eventually be unable to manage his or her own affairs and will be entirely dependent on others for care. It is a progressive disease, which means a person's condition will never improve and will only get worse."

http://www.emedicinehealth.com/alzheimer_disease_in_individuals_with_down_syndro/article_em.htm

I was not prepared for this disease either cognitively, emotionally, or financially. Call me ignorant, but I did not know the correlation of DS and AD until 2002 when my sister was initially diagnosed with Dementia of the Alzheimer's type common to Down Syndrome. Her earliest symptoms included psychotic hallucinations and delusions. She was 51.5 at that time.

When Lizzie and I moved into our home 7 years ago, life was so much fun because her symptoms were amusing, and she was still engaged in me as her housemate, sister, and friend. However, as the years passed by and when I realized what was happening as I began to see her deteriorate cognitively more and more every week, I fell into the grieving process as I realized I was witnessing the loss of my sister and best friend. The depression was so intense I found myself isolated from everything and everybody in my life except my job and my home life.

I struggled to find sufficient caregiver help so I could get to work in the morning and run necessary errands in the afternoons. This drained me financially, and I have no doubt I will go to my grave with the enormous debt I have accrued for Lizzie's care. Interestingly, I met a man (online no less) who has a disabled son. It was this man who informed me of what benefits are available for the disabled, and so I began my quest for state benefits/help for Elizabeth. That in and of itself will be the topic of another blog SOON because those of you in similar positions NEED to know the game I wasn't invited to play by this state's social worker assigned to my sister's "case" in 1987.

I am certain my parents did not know about this either. I remember our dad once telling me that if anything happened to my sister, that she would be able to live at the VA inpatient home because he was a WWII vet. I have no idea what he was thinking at that time because no such option exists for his disabled dependent.

I think I will take a blogging break because I have written a lot today and am feeling "scattered" in my thoughts and reflections.

ARE

The Alzheimer Support Group taught me the acronym A.R.E.

Don't ... Argue with an AD patient.
Don't try to ... Reason with an AD patient.
Don't try to ... Explain to an AD patient.

Remembering ARE is very helpful for me because I am able to take a deep breath and either walk away (not too far) or respond by saying something like: "Oh Lizzie, put your arms around me!" "OK, what should we do next?" "Let's dance!" ANYthing to switch her focus works.

This strategy helps my stress level diffuse.

Well DUH!

I JUST NOW found a tab on blogger that allows me to view all the comments readers have posted, and I am so sorry I haven't responded to some of your inquiries. Please forgive me!

Socks Shoes Slippers

Yesterday morning I actually fell back to sleep after helping Lizzie in the bathroom at 6:00, and slept until 9:30. Once again, upon wakening, I had that thought of OMGoodness ... what is my sister doing? I found her walking around the house in her night gown, socks, and running shoes. She said, "Let's go!" I should have taken a photo, but I hadn't had my first cup of java yet to think that fast!

This morning (after 2 awakenings), she was wearing slippers instead of shoes, and each foot had a different slipper. When she sat down in the kitchen and stretched her legs, she looked at her feet and exclaimed, "How did THAT happen?" which cracked me up!

My sister's moods change from moment to moment. She can shout out with vengeance: "Leave me alone!" "Don't worry about it!" "I know what I'm doing!" "Go jump in a lake and drown!" "You're a pain in the you-know-what!" The next moment she might lean back in her chair and chuckle whole-heartedly from her belly like Santa Clause.

These mood swings are typical for AD and are not to be taken personally. It is exactly what is meant by the patient "living in the moment" and being unable to reflect backwards in time even 5 minutes ago or projecting forward as well. My sister knows only right "now".

While Elizabeth is cognizant about knowing people are around her, her responses are (more often than not) inappropriate even in familiar situations. This is a moderate stage symptom of AD. Her recent toileting issue of needing assistance because she has forgotten "how" the process goes, however, is a symptom of advanced disease. I am learning that it is not unusual for an AD patient to demonstrate symptoms of varying degrees along the journey.

6 Hours

WooHoo!

I didn't hear Lizzie up until 7:00 this morning, and thank you Lord! I checked the bathroom, and all was DRY so I went back to bed just to relax even though I knew my sister was awake. An hour later I arose to find her pulling herself together in her bedroom. Whew!

Yet another hour later, Lizzie came into the kitchen all smiles and happy greetings until I told her that today was not a day to wear summer sneakers and brought her boots instead. Once we got them on her feet, however, she was fine with the change.

She really can't be left alone in the kitchen any more either. While I was getting ready for the day, she went into her pill-drawer and because she saw a cup of pills I had set out for dinner, she apparently thought those pills were for now and was starting to take them when I came into the kitchen. Now this would not have killed her, but it evidences my concerns about her being alone for even one moment or two.

I briefly mentioned to her that I think it is time we got a second home, and that a group home might be a good idea. Her response brought back the sister I have missed for so long. "Oh no I won't. You think a group home is so good, YOU go live in a group home." What do I say to that?

No Sleep Allowed

Just as I was dozing off shortly after the previous post, I heard "twin sister .... twin sister ..."

Lizzie was wide awake, and I don't even know for sure if she ever fell asleep since she went to bed 2 hours ago. She was fidgeting with the blankets, sighing deeply, and talking to herself. When I approached her with just the hall lights on, she said, "Twin sister, there's a dog in here. Where did that dog come from?" I reminded her that we have 2 dogs, and that what she thinks she saw was probably one of our dogs.

I thought wow ... she is too awake for me to get any sleep tonight, and I just can't imagine that possibility. So I gave her a sleeping aid / herb called Holy Basil. This is something I have found that helps me sleep when I need it too. I am not one for sleeping pills per se because of the addictive possibilities, so I did research at Whole Foods about what to use instead. Holy Basil seems to work well.

Lizzie is still talking to herself as I am writing this post. Maybe when all the lights go off she will settle down. Let's hope and pray so. Good night!

A Prayer Request

I sent this letter out to my prayer warrior friends 2 days ago after a week of getting only 3-4 hours of sleep at night because I am tending to my sister's toiletry needs. Once I am awakened, it is difficult to fall back to sleep. I am feeling like a zombie during the day as I struggle to maintain and satisfy my job requirements. I can't believe this is happening.

My dear brothers and sisters in  Christ
 
I need prayer!
"And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints" (Ephesians 6:18). 

I am asking for your intercession bc I myself am struggling with daily exhaustion to the point that I can't even ATTEMPT a prayer ...
"In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express" (Romans 8:26). 

And so here's my situation:
 
As most of you know, Lizzie's dementia symptoms are increasing to the extent that I am feeling empty of that "grace" that has allowed me take care of her for so many years on my own.  I have been touring group homes for a couple of months now as an alternate living situation for her.  I have FINALLY found 2 (and am visiting one more today) that satisfy my standards of expectations.  This is one of the most important decisions I have had to make in my lifetime. 
 
I need help deciding which home to place her in, her adjustment with this new living arrangement, and I also need a spiritual uplifting of my broken spirit at this time. 
Matthew 18:20 ... "For where two or three come together in my name, there am I with them."
 
Thank you, and may His peace be upon you in all your endeavors today!