Saturday, May 28, 2011

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 ...

Friday, May 27, 2011

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.