The Journey Continues

Well, it's time to do this. I have had it going around in my thoughts for over a week but really did not have the time to sit here and do justice to the information. I'll give it a try tonight.

Bonnie and Deena left on Wednesday, Feb. 24 after a great week together. Yes, the visit was interesting, enlightening, endearing, affirming and productive in many ways. They were able to meet the woman our mother is today. They heard the joyful and made-up stories - several times. They went to church with us and to I-HOP. They were awakened many times during the nights by Mom being up and dressed. When they couldn't find something, like a tube of lotion that Deena had just bought at Target, guess where we found it? Yep, they pretty much got the whole experience except perhaps the bouts of anger and agitation that come out of nowhere.

In order to take you on this journey with us, I'll have to go back a week or two.

You all know that I have been contemplating again, how I will know if and when we would need to move Mom to a place where she would be safe and healthy and that I have been in prayer about this for sometime. So, while Deena and Bonnie were here, I took them to the memory care place that Joe and I had toured in October. After meeting with staff there, we took the initial steps to begin moving Mom there. Medical records were requested from her doctor and an in-home assessment was scheduled for Feb. 19. The person who was to do the assessment did not show. I thought perhaps we had mis-communicated about the time but I was unable to reach her at her office or on her cell phone.

My prayer has been "Lord, I want to do your will, but how will I know what that is?" So, I was leaving it up to the Lord to lead me in this decision. And it appeared that the door to that memory care unit was opening. Okay, we were still rocking along like normal; Becky was here everyday and things were pretty "normal."

On Friday, Feb. 26, Becky came as usual. Mom got up before I left for work so I initiated getting her dressed and asked her to put on fresh panties and pad. She did it but was not happy. I left her dressing while I continued to get ready for work. Mom dressed and came to the kitchen table while I was talking to Becky and getting everything together for the day. Mom announced that she could not live here anymore! That turned the conversation a little. Knowing that I had already taken steps toward this, I agreed that she was probably right and that I would work on making some arrangements for that. At that point, I dug through my purse and found the card of the person who did not show up for the assessment and was determined to call her when I got to work - taking matters into my own hands, essentially. I found the card and slipped it into my pocket and started out again.

Before I could get to the door, Mom had an indescribable moment of clarity and announced that she wanted to move to Tanglewood!

Becky and I were speechless! Goosebumps! Awe! One moment I am taking matters into my own hands because God is not moving on this and the next, the answer to my prayer comes out of Mom's mouth. Becky explains it saying that not only did He answer my prayer, He sat at the table with us that morning and delivered the message!

I left for work finally and called Tanglewood on my way there. The details of the day are foggy but throughout conversations with administrators there, the obstacles such as TB tests and doctor orders, just fell away. By 12:00 that afternoon, I called Becky to say that Mom should pack a bag. And here the story turns a little! When Mom heard that she was to pack a bag for Tanglewood, she became very agitated and angry and Becky called me to come home. Mom denied EVER saying that she wanted to go there, she hated the place and a lot of other stuff, including that she WAS NOT going to go!

There was absolutely no doubt in my mind that this had to happen and to hesitate on my part would be lack of faith, doubt and even disobedience. I moved through it, packed her bag, found out that Joe could get off at 2:00, and by 3:00 Becky, Joe and I were in the car with Mom as she held and cuddled her baby, en route to Tanglewood, the whole time, ignoring Mom as she insisted she was not going to stay there.

And that is where Mom is today. She still does not want to be there. We moved her bed, dresser and rocking chair there. I take more things to her everyday when I visit.

I see how unhappy Mom is almost every day - she tells me she wants to be dead rather than live there. But it is unbelievable how she fits in there! Today, Mom was resting on her bed refusing to go to lunch and wearing her blue jacket that has her name on the front and "Outdoor Army Store" on the back. She was quick to tell me that she was wearing it because a boy had stolen it and she got it back from him! I got her to take the jacket off at one point and what did I find in the pocket, but a metal belt that did not belong to her! I finally got her to the lunchroom and saw that she was wearing a wristwatch - NOT HERS! One of the guys there, stopped me to ask if I had tried the pool yet? I told him no, that I had not. THERE IS NO POOL THERE.

Of course, leaving her there when I know how unhappy she is, is very hard but I am still at peace with the decision. I do weigh it now against what I come home to: a peaceful home with my children and grandchildren around me. Stacey, David and the kids have been here more and have not been subjected to the verbal abuse or the chance that Grandma will trip them or try to scratch them as they walk by. And I have slept so well every night. Haven't taken a Xanex all week.

This chapter is long, I know. I wanted to share the details with you. You have supported us in prayer, cards, phone calls and visits. I don't know where we go from here but I will be exploring it in the coming chapters of this blog I suppose.

A Need for Sleep, Glasses, Shoes, Hand lotion and other thoughts.

I wrote this last week but was interrupted before I posted it. I am posting it now although things changed drastically yesterday. I am going to leave this hanging with: Mom now resides at Tanglewood Oaks. And I will post more on that later.

This past Monday night was another one of those nights. Mom was up at 11:30, dressed and in the kitchen fixing herself a cup of coffee. House was dark, everyone was asleep. I put her into her pajamas and put her to bed. At one thirty, Mom was at the kitchen table, dressed in different clothes, going through a small pouch of junk jewelry. I got her back into her pajamas but she would not go to bed until we found her glasses. I could not remember if she had been wearing them earlier or not but I looked in her covers, under the bed with a flashlight, in the bathroom, etc. Finally I began looking through her drawers and opening the various pouches, boxes and bags that she stashes her stuff in. When I unzipped an eyeglasses pouch that she held some jewelry and pedicure scissors I found her glasses. At about 3:30, Mom was up again. She had been on her hands and knees and matched up her shoes beside the dresser. She had a white sandal and a black sandal that did not have mates and was agitated that "someone" had taken her shoes. The hunt began, same scenario as with the glasses and when I opend the bottom drawer of her dresser, there was one missing shoe under some pajamas - but she, of course had no idea how it got there. That satisfied her for the moment and she went back to bed dressed.

The best part about this was that Bonnie and Deena were here to witness what I have been blogging about for several weeks.

They have both left for home now but it was great to have them here. Much was accomplished in many ways. Mom did not connect with them at all and after about 4 days, was ready for them to leave, most likely because although the girls spent quality time with Mom, the three of us were gone a lot and did not take her. At one point on the day before they left, Mom confronted Deena with "I don't even know your name, nobody told me your name." We tried several times to get Mom to connect that this Deena was the same one that calls her every weekend. Did not happen. One day, Deena was looking around for a tube of hand lotion that she had purchased but could not find it, eventually thinking that it may not have made it into the bag at the store. The next day, she was in Mom's room and there on the dresser, was...you guessed it...Deena's tube of lotion.

I could write a book about all of the odd, peculiar, frustrating, amusing and sad moments in our days. But who would believe it except someone who has experienced it and if they have experienced, they don't need to read my book, they could write one of their own!

Updates

Bonnie and Deena arrived Wednesday evening. I introduced them as my sisters visiting from Ohio and Pennsylvania and Mom was very happy to meet them. She has been telling her stories and bringing out her stuff to show to them, giving away some of her junk jewelry and odds and ends of things she has kept - like a wooden token of Covered Bridge Pizza in Kingsville.

Yesterday, (Thursday), we three girls visited The Estates where Joe and I had previously toured. We spoke at length to the administrator there. We are expecting her here at the house on Monday to do an assessment to get the ball rolling. Mom's medical records are being requested from Dr. Birdwell and as soon as everything falls into place, we will move Mom to the Memory Unit at that facility. She is not going to go quietly even though she does not really grasp where she is or who is with her now; but she is at least in her routines and she has familiar stuff around her. Mom is still cognizant of a few things such as the chest that we brought with her to Texas. Since Christmas she has been trying to get me to put it in her bedroom because it is hers, her grandmother gave it to her and she does not want "the kids" getting into it. Even when Becky and I went to open it yesterday looking for something that has been misplaced, Mom got upset. So what I am saying (probably for my own hearing), this is not going to be a walk in the park. We (Bonnie, Deena, Joe and I) agree that we have to do this for many reasons despite her wishes. I don't know that it will be accomplished before B&D leave on the 24th, but I am thinking that it will happen. My biggest problem with this may actually be that Becky will be unemployed.

Now to tell you what we were looking for everywhere including the chest. "Dinky" is missing. Since his unfortunate demise, his remains have been in a Ziploc bag in a lovely little cedar box with his name engraved on a gold tag on top of the box. I was looking for something else on Wednesday morning and I found the empty box. When I mentioned it to Becky, she remembered Mom carrying around a Ziploc bag of dirt or something earlier in the week but when questioned, about what was in her bag, Mom did not know so Becky didn't pay it any attention. We are thinking that it was Dinky and now we have no idea where he is. He may be back in Mom's room in some other place or he might have left this world again - this time in the garbage. We just don't know. AND we anticipate the day that Mom has a moment of clarity and finds the empty box and wants to kick some body's ass for stealing Dinky and then she will add that she hopes they "burn in hell." Maybe she will never have that moment of clarity or maybe we will locate him and put him back or maybe we'll come up with a Ziploc bag of Texas dirt to put in that empty box.

So, that is a little bit of where we are today and where we are headed. We are having a good time visiting and the girls are meeting a different person than the one they knew and going with the flow.

Thank you all for your prayer and support. I'll keep you posted.

Some Whimper and Whine today.

I know it has been a while, but you all have been on my mind, as I know we have been on yours. I think I may have been avoiding this, putting things in writing as though it is just all a matter of fact and how the days are going. It is all just a matter of fact, but about the time I think I have the facts straight, I find myself reassessing and re-ordering them. Some of the new behaviors have me stumped.

I think it was around Christmas when I communicated with Bonnie and Deena about them visiting here, both at the same time to re-connect with who our mother is today. All they had to go by was what I told them and the have missed out on so much of this journey with her that I have been blessed to have. Since that time, however, the changes in Mom and my own limitations have lead to more serious consideration as to what I and my supports are prepared to do or are able to do to keep Mom healthy and safe. When Bonnie and Deena get here next week, I will depend on them to prayerfully discern this with me. We have spoken recently about Mom living in a nearby Alzheimer's Memory Care unit that I visited several months ago or possibly go with Deena to a place near her.

What has led to this again?

Some of the behaviors aren't new, but are more difficult to redirect. Mom needs 24 hour one-on-one attention. And we are running out of money to pay for it when we aren't here. She will qualify for Medicaid once she is out of funds, but that takes weeks to process and we still need to pay a caregiver Monday through Friday. On the week-ends and evenings, it is just Joe and me.

Mom wants to eat constantly. We are hiding food! She has breakfast that we monitor - 1 peanut and butter sandwich which she makes with enough peanut butter and jelly for 3 or 4 sandwiches - no exageration! Here's an excerpt from the journal by Becky: Something did happen a little different this morning. After making her sandwich at breakfast, before taking a bite, she was all over the kitchen searching for something. She could only come up with making her fingers in a circle trying to describe it. She sat back down and ate half and started doing it again, getting agitated. I got her to stand still, take a breath, and think. When she said it was something she eats with coffee, I knew it was the cookies I hid yesterday. I explained that she needed to eat her breakfast first. Then, she went to the candy jar and got 2 Reeces. I eventually hid those because she just doesn't get full any more. We are now regulating her food."

This is an everyday thing. Another everyday thing is that Mom changes her clothes 3 and 4 times a day! I can't keep up with what is clean or dirty! And in the evenings Mom puts on lipstick and a ton of perfume and jewelry like she has a date or something.

We keep the doors locked because Mom wants to go outside all of the time. No coat. To play with the dog in the backyard, sit on the swing, look through stuff in the garage. It has been COLD here. Sometimes she can figure out how to unlock the doors. Becky can't even go to the bathroom - Mom is out the door.

Twice this week I have heard Mom up in her room after bed time. When I checked on her she had locked her bedroom door! Luckily, she had not though it through and locked the bathroom door that goes into her room also. When I asked her about this, both times she told me that men had been in her room and she had chased them off. Mom was visibly upset and scared!

Mom is not only changing her clothes during the day. One night I had put her to bed three times before 3 a.m. Each time she was wearing something else when she came out to the kitchen. One night I found her sitting in the kitchen dunking Nonnies in a cup of water. Speaking of her cup, Mom has been cleaning up the kitchen, wiping the coffee cups out and putting them in the cupboard. The jelly that needs to be refrigerated is in a cupboard somewhere. The open can of dog food is in the cupboard next to the peanut butter.

Yes, life is interesting! Mom is extremely busy and getting into everything. Picking up things around the house like clothes, shoes, keys, coins, paper cups, mail, etc. and stashing them in her room.

THIS is what has brought us to this decision point again. Can I say I am confused and just a little bit tired some days? Part of me says I am a "whinybut" and that a visit from the girls will be just what I need to energize and focus me. The other part, honestly, is planning to go on the annual silent retreat with the women at church that I haven't done in 3 years, making a trip to Alabama for Elsie's first birthday, planning a cruise for our anniversary, taking a position at work that would require more commitment...knowing that Mom is taken care of.

Anyway. THANKS FOR LISTENING TO ME WHINE!!! I'm done now and I will get back on track. Serving HIM with a servant's heart of giving and grace. Blessings ABOUND!!! And He will let us know His will in this too.

Another Saturday Night

Another Saturday night. Church and IHOP, of course. Deena called today as she does every week. Mom takes the call and mostly connects to her. Today was no different. At dinner, Mom told me that Deenie called and said she was going to visit. Joe and I went along with it and Mom continued to ramble about Deena and having two girls who are all grown up now and have babies. When I asked how she knew Deena, Mom said that "she was always with us up there". She had no idea how old Deena was or what she looked like and "who knows what color her hair is." We had this conversation twice during the dinner there.

The day started out with me finding my pizzelle iron on the extra bed in her room and asking her why it was in her room. She said it was hers. I advised her that it was not hers but mine, and I had gotten it from my birthday a couple years ago and went to her room to find her iron. I found it in the back of the closet where I am sure she hid it so the short fat girl would not borrow it again. Later, Mom brought out her iron and put it on the kitchen counter saying that someone had given it to her and she didn't know how to use it, so if I wanted it, it was mine. Joe began trying to unravel all of it for her but after only a moment, saw that she was lost and left it alone.

I also want to add just a couple of excerpts from the journal this week:

Tuesday: "so far resisting all my efforts to keep her on a positive note. She's having a negative day. She went in Julie's room and got an attitude when I told her "we can't be in there." I locked the door. She made another attempt to go in. When she couldn't get in, she looked at me very disgusted, and said, "well, that woman will go in there. Julie used to live in there!" She is also agitated about her shoes. "Some men and women went in the room and took the ones she likes." I reminded her that she gave a lot of them away. To sum it all up, she has had an agitated hands on the hips attitude kind of day."

Friday: Mom was asking about Becky's granddaughter's baby - "maybe they are "twelves" she said, meaning twins. That took her back in time when her mom and dad had twins. Her dad was an alcoholic and mean to her . He made her take care of the babies. They had no car so she and her mom had to walk the babies to the doctor. That where they told them the baby boy was going to die. I sense some guilt on her part because she said "I was holding the little girl and dad he was an alcoholic, kept telling me to take car of the boy. I told him okay, dad, but I'm holding the little girl. I tried to take care of both of them."

Yes, Bonnie and Deena are planning to visit on Feb. 17. I called Bonnie to suggest it and it all came together. I know it will be a different kind of visit and Mom won't connect with the fact that she is our mother and she has three daughters. But she will most certainly enjoy the visit and Bonnie and Deena will have a few moments to share in and remember this part of her life.

Everyone is in bed but me and considering how "cranky" I was this morning, I guess I had better get there as well. Thanks for listening. Love you all.

A WINDOW ON HER WORLD

Good Sunday Morning! Everyone is still in bed except the dogs and me. So far it is a good time to collect my thoughts from over the past few days and try to put them down here.

Sometime last year I purchased a regular planner calendar that was a week-at-a-glance and had about 10 lines or so next to times of the day. This is how Becky made notes about Mom's day so I would know what time she ate, what she ate, her demeanor during the day, problems, successes, outings, interaction, etc. Ten lines was not enough to capture all of that, so when I went through some of Mom's things that we brought over from the storage unit, I found a couple of empty journals - the books with empty pages. Becky began using one of them each day and has been doing a great job of writing about Mom's day rather than "reporting" on it. In order to communicate what our "norm" is, I want to transfer some of it here from over the past week or so.

Monday, Jan. 4th: (Becky writes) Marge is having a normal day. Her speech is still mostly mumbo jumbo, but at times , just as plain as day. She now mostly call Heidi, Dinky. Her memory of getting her nails done are that this lady sat at the table and said 'put your hand on her' and then painted my nails, but next time I'm telling her no, because this color is pretty, but I've never had it before. Off and on all morning she kept getting in the cookie jar and nonni jar, so I put them up.

Tuesday, Jan. 5th: (I write) Up at 6:30. Joe gave her breakfast and pills. No Tylenol. No coffee. Shower and Tylenol by 7:30. (Becky writes) Lunch at 2:00 from Chicken Express. She helped move chairs for me to clean carpet, went to garage and I steered her back in the house, pulled a chair up and we talked while I was shampooing. She dusted the chest and looked through it, said it was her grandmothers. She wants it back under the table so children won't play on it. At 3:10 we treated ourselves to a scoop of ice cream and brownie. At 3:50 she had coffee with two cookies.

Wednesday, Jan. 6th: (Becky writes) Morning hours she was active and receptive but words are still oleo. She rocked Heidi and sang. She sat in the memory room and showed me pictures and who they were (her version). She sat at the dining table and showed me the crystal again. (I had unpacked about 6 or 8 pieces of crystal that we moved down here and and it was on the table.)...looked at pictures in living area and went to Julie's room and I asked her to come back in the living area. After she rested she was eager to go pick Julie up. We had some "out there" story telling today.

Excerpts from some other days:
She's been in a good mood all day but mostly quiet and confused. When asked to put on a jacket, she put her house coat on. She has been busy looking at things throughout the house all day.

Not real talkative but receptive and cheerful and alert. Wants to clean Julie's room so I stay with her while she folds things. Reception not as good as earlier. When I asked her if she wanted 1 or 2 nonni's she never could grasp what I was asking even when I held up 1 or 2 fingers. She still has on yesterday's clothes. I'm still working on that. (at 1:00p.m.)

We sat outside for a while and watched the birds and made things out of the clouds.

Today she is wearing her name tag. She has shown concern for Julie all day but I've insisted she not go in her room.

As far as this journal goes, she says it's no body's business what we do during the day "we can take care of ourselves." She said she wishes people knew that she was old enough to decide what she wants.

Mon. Jan. 11th: This afternoon she asked who the lady was that was here. When I told her it was Julie, she said "but we didn't go get her and bring her here." When I explained that she didn't go to work she said , "she's too small to work. She's just a little girl and measured her height at about 3 feet. She remembers her coming down the stairs, closing her door and coming into "the" room. I told her she 's grown up now and her response was that the woman was to big to be Julie. Then she focused on the trunk. She wants to take it to her room but said "they won't let me." She hung onto a birthday card for awhile but had no idea who the person was.

Tues. Jan. 12: ...been a struggle to keep her out of Julie's room. We made muffins while she tried again to talk me into letting her in Julie's room.

Thurs. Jan. 14: ...words are mixed up and reception is still slow but is eventually able to grasp what I'm saying. Issue is Julie. "our Julie is little, what happened to her?" I tell her she is grown now but she just gets this confused look and shrugs her shoulders. She dwelled on the crystal for awhile referring to it as worth a lot of money. She wonders what "they" are going to do with it. She's absorbed a lot recently by going through drawers, cabinets, trunk. She refers to most things as some thing her grandmother gave her. She doesn't want anyone taking it. About 1:30 she tapped me on the shoulder with tears in her eyes and said "they won't let me have my things out of the trunk. ...started verbalizing about the license plate on the wall (said it was from the car she wrecked), the light fixture in the dining room, the bowl on top of the hutch "from Italy". She said "I don't have any kids, but if I did, I would like to be able to show them these things, but someone in this house took them from me.

Fri. Jan. 15: Wow, the last 45 minutes have been tense. We were having a stand-off and I won. I told her if she didn't put on clean clothes and change her P&P we were not going to get Julie. Boy did she stand her ground. I finally said "never mind, I will call Cheryl and tell her we won't be picking up Julie today." I walked out of the room and watched her. I heard her say "OK, fine, let's go do it. She's not happy about it but she's clean.

I know, I don't write for a week or more and then I dump all of it at once. But didn't the different colors make it more interesting? Since I began this, Mom has been up and I gave her breakfast. When I am sitting here at the computer, she often brings things one at a time from her room to show me. This morning when Mom finished her PB&J, she brought her little bird that chirps to show to me. We had to make it chirp and feed it the little bottle she has. Then it was her baby who is a good baby and does not cry. I love on the baby and Mom puts her back to bed in the cradle. It is all quiet again so I am thinking she is back in bed also. It is after 9 and time to get dressed myself and get on with the day. Thanks for looking through this little window on Mom's life and keeping us all in your thoughts and prayers!

HAPPY NEW YEAR 2010

Happy New Year! I have heard a lot of people say that they are happy to see 2009 go and are looking forward to a better year for 2010. What we have learned here is that time is irrelevant. It doesn't matter what year it is. It doesn't matter what month or day it is. Each day is unique and holds its own challenges and rewards. Each day we wake up is a good day! That is Mom's philosophy and it is a good one. We can't change (or remember) yesterday so today is the day to make a difference.

Mom loves going to church! It has become slightly more of a challenge lately as she likes to socialize more than pray! Especially if children sit near us. And of course there are at least two opportunities during the service to "visit" with people - at the beginning with Brother Paul tells us to turn and greet our neighbors and later when Deacon Gary tells us to share a sign of peace. Redirecting her and telling her to turn around and pay attention is reminiscent of bringing children to church. As we pass babies or small ones, I tell Mom "no touching" and steer her away. Before long, I'll have to talk to the lady in charge of the church nursery and see if she is too old to go in there during services!

Of course we went to IHOP afterwards. They have different seasonal promotions and the most recent one here has eggnog pancakes, pumpkin spice pancakes and pecan pie pancakes among other things. Mom has been having the pecan pie pancakes instead of the usual strawberry.

This past week, Mom has been bringing things from her room to show me (over and over again) and to talk about them. Many of the things are items she made when she was at Tanglewood and had stashed away so that no one would take them without paying for them. This week it has been small Christmas ornaments she painted and several small tote bags that she painted. She brought the tote bags out again yesterday so I suggested that she bring them with us to church to give to people there. Mom did bring them but decided to leave them in the car. At IHOP I decided those bags were not coming home with us, so I took them in with us and "facilitated" her giving three of them to the three waitresses there - all of whom know us. That left two unclaimed and Mom continued to try to communicate to the girls about giving these bags to "the others". There really were no others there and I knew that before we left Mom would be headed to strangers in the restaurants and/or the cooks in the kitchen with these bags. This all leads up to my big confession: there are times that I totally take advantage of her muddled memory and thinking and this was one of those times. When Mom was distracted, I slid those last two bags out of sight and carefully kept them so until we got home and I could tuck them away. Mom has not questioned it and I am sure that in her heart and mind, she gave the good people at IHOP, all of those hand painted tote bags.

I have used this same strategy when giving her the same clothes that she has had for years. This occurred to my totally by accident when I brought out the winter clothes this year. I washed them and took them to her to put away and she thought I had been shopping and bought her new clothes. I went with it and took the hugs and thank-yous. It was easier than explaining it. Since then, I have given her the same new clothes several times.

Today Mom has been up and had her breakfast of a peanut butter and jelly sandwich. Let me also tell you that this is no ordinary PB&J. Mom fixes her own sandwich with about a half inch of peanut butter one one piece of bread and about two heaping tablespoons of strawberry jam on the other piece. That's breakfast along with a dozen pills. And she swallow ALL of the pills with at once with one gulf of water! Mom usually has the PB&J and a couple Nonnies to dunk in her coffee but this morning I made fresh biscuits which she also ate with some jam. She, Joe and Julie are all back in bed for the first of their Sunday snoozes.

With everyone otherwise occupied, I will get the kitchen floor mopped. Joe has already run a couple loads of laundry. Four dogs, two birds and a turtle have been fed also. And no, there is no partridge in a pear tree if that is what your heard.

Just know that we are all well and extremely blessed! Each new day! Let's not wait until 2011 to have a good year. God has a magnificent plan for us and we just have to wait for it to unfold to His glory - each new day. Do I hear an AMEN?