Rob,
I can't say thank you enough for being the loving friend, to all of us, that you are. I thank you also for your insight and educating us on this grim matter. You are a true gift from God.
Thank you too Amy for making this possible for Mom.
Love you both,
B

Drew,
Mom is, for the most part, pretty ok ! Her mind an be as sharp as a tack on a lot of days, but..... that doesn't translate into taking care of herself. She is supposed to take Aricept every day. If I call and ask her if she has done so, she always says - 'yes, I took it'. But then - like today, I go out there and count the pills in her bottle. 6. There were 6 pills in her bottle LAST Friday !! Aricept is supposed to help her memory not deteriorate.
She is getting physically frail. You know how much she has shrunk in height over the past few years. You know also that she is as independent as all cussedness. I asked her today to use her cane when she went outside. She totally blew me off.
She is still Granny. She will always love you and will remember you and your friends as long as she has her memories.
I will do my best to be honest and open with you about how Mom is. I don't pull many punches. Please feel free to call me or email me (amy9990@gmail.com or 865-384-2962) anytime if you have questions or concerns.
Visit when you can, love always, and don't EVER feel bad about living YOUR life. Granny would want you to and expect you to.
I love you,
a

In answer to Drew, Jill Joey and Charlie Robert's question: Even with dementia, a person will maintain life-long skills, in your case, casual conversation e.g. "Hi. I'm doing fine. I miss you." things like that. Making a pot of coffee, dressing, taking a shower, things she has done all her life, she can still do. I wouldn't be surprised if she could still beat me at canasta. Also there is a goodly part of Helen that is still quite intact enough to "get it together" for phone calls, company, etc.

So, yes, she has dementia and yes, she can still make good, casual conversation (see my entry below). It is only when she is "out of her element" (e.g. Dr.'s office) that a practiced eye would notice something amiss. So, don't despair. Granny is still very much the granny you have always known and loved. The main issues are medicine non-compliance and an unsteady gait. Do call frequently, especially in the evening when she is often by herself. Keeping her "connected" to others is a big help, either by phone or visit. Don't forget to pray. R.

Things went very well today. I came a little earlier, stayed a little later until Amy was able to stop by. Helen and I carried on a very long (2hr.), interesting conversation, most of which was about Alzheimer's Disease and it's manifestations! I told her how glad I was to have someone to be with during the day and to be out in God's Country. She responded by saying she was glad as was there as she was lonely too and "didn't even have a dog anymore." There is no un-truth in all of this. Monday, I am going to call and ask permission to come out, thus giving her a goodly measure of control, so much of which she has lost in other areas of her life. (I don't know what I'll do if she says "no." I'll call one of you, I guess.) She wants me to bring my carving out there to do.

About 2 we went to Hancock's for a cheeseburger, which she finished. Later, when Amy was there, she enquired about Colace dosages, needed, I assume because 1) everything slows down with age and 2) her diet, or lack thereof. Amy brought groceries. No junk.

Perhaps, for now anyway, the reason my company is welcome is because I'm not coming at her with any dementia-related issues....yet. I'll let prayer and timing tell me when to introduce, first, the taking of her meds. I don't know how she will take to me fixing us a healthy lunch. There's always peach milkshakes!

Amy expressed doubts about Gary taking to his new insulin/diet regime, which is understandable considering his track record with the pre-ketoacidotic episode. It could go either way. I'm trying to get up my nerve to ask him to let me look at his feet. I don't know what he's eating. He's been so important to Helen's "having someone there" his condition will warrant as much monitoring as I can manage, not really knowing him.

8/28/09

Would anyone argue that my Granny does a better job of communicating over the phone versus in person? I speak with her once a week usually during the daytime on Thursday's or Friday's and she appears to be the same, sharp, alert, cognitive person that I have always known and remembered. With Jill and I being in Greenville and not getting up to Knoxville and visiting as much as I know we should I make a conscious effort speak with my Granny consistently. I offer the aforementioned question to answer my own concerns about her health. Obviously I can see no physical differences over the phone, but am curious as to what the difference are live and being with her as compared to telephone conversations. In the last three years she has not repeated a story, confused dates and times, or called me by another name anymore than my peers. Helen always reminds me of how sorry she is that she was not able to attend our wedding and asks that I please send pictures. She asks about my friends Josh and Lindsay Ward and how they are doing with their teaching careers. These type of questions about my friends and recent events remind me that she is very sharp at times and can have a wonderful memory. I always try to look at her health as objectively as possible and not romanticize the idea of my granny growing older and more forgetful. I hope someone can provide some insight and any thoughts, ideas or feedback would be wonderful.

Thanks and Love,

Drew, Jill, Joey and Charlie Roberts

O.K. At Becky's request, I went out this afternoon (Thursday) on the not-so-far-from-the-truth pretext of "checking in on Gary." Of course, this was my "cover" for checking in on Helen, too. I only went for a couple of hours. The most obvious danger to Helen I saw was her ability to walk. Yes, she used her cane, but was unsteady, even on it. She told me later she never used it anymore. Didn't need to. Also, in the course of a fairly long and pleasant conversation, she made reference to her belief that "not needing care" was every state short of needing to be in a hospital bed. It's going to be hard to "sell" my visits, especially on a daily basis. Perhaps the best tactic would be to say "Rob is all alone all day and he likes to come out to the farm for a little company. He can just be at the house, take a nap, read, check on Gary...whatever....Rob's a lonely guy right now. You'd be doing him a favor, he isn't your "caregiver" he's just Rob, wanting to spend the day in the country with an old friend." That's more likely to bring a "sure, I don't mind, tell him to come on out" response than anything else I can think of right now. Again, I'm pretty sure we're looking at another fall in the future and I think Becky's banister idea cannot be implemented a moment too soon. Helen's conversation was good. She even showed a flash of insight as to why there was someone in the field behind the house with what we used to call a "steam shovel." "I know why he's down there, Ed used to have to rework the drainage down there from the pond!" That was correct. Yes, she repeated herself, but not with the same story today, just things she had told me about before.

Judging from Tamara's opinion today that full-time care was warranted and that the insurance company would agree and "back pay" for caregiver time once the go-ahead was given, it may be time for the deciding parties to meet and decide the best method to go about this. Again, it's o.k. to make the doctor (be it Perra or the geriatrician) "the bad guy."Given, I can't/won't shadow her every step she takes to prevent the predicted fall, but we can "have lunch together" thus insuring her meal intake. I am still of the opinion that a boom!, 8 hour visit is better accomplished in increments, a little longer every little bit. Helen still knows "what's what" and has never been anybody's fool. She wants her independence until it's "hospital bed time."

Finally, since Helen is beginning to "sundown" (get looser in the head at that time of day, a predictable feature of dementia), it may be that a hypothetical 8-5 presence would serve her better by being a 10-7 presence as that would cover at least part of the sundowning as it worsens. Just tell me what to do, and I'll do it.

R.

Hi All,
Just wanted you to know I picked up Mom early Monday am and took her to the hospital to visit Gary. We stopped at Walmart first and then Wendy's to get Mom and Kathy something to eat. She sat down in the hospital entrance til I parked the car then I wheelchaired her up to visit Gary. I stayed about 20 minutes. By the way, Gary looks pretty bad :-(. Kathy was going back out to the farm that evening so she took Mom home. They got home about 4:30. I called Mom about 6:00 and asked her how the day went. She replied "Good, Scott came by and picked me up on his way to work this morning and took me by the hospital so I could sit with Gary" :-(( I then replied "Well, that sure was nice of Scott". She said "yep".
This is now Tuesday evening. I spoke with the claim rep. at John Hancock Ins. today. She told me Dr. Perra's Plan of Care had just been received today. She had also received some letters from us as well, describing how we see Mom. She's suppose to call me Wed. and let me know if she needs anything else before she takes the info in for a reconsideration review.
Hey Amy, thanks so much for spending the day and evening with Mom. Sorry I couldn't pitch in today.
Love to all,
B

This is Becky
It's Mon 9:30 am. They had moved Gary to CCU and now they are moving him to rom 395. I spoke with Kathy and Dr. told them they thought his medicines had over loaded his kidneys causing them to shut down. They hope to get his meds under control. He's expected to be in hospital 2 or 3 days. Hopefully that's all. I'm headed out to get Mom this am and take her in to hospital so she can sit with Kathy today.
Gary is at St. Mary's
love all

Well it was a good weekend mostly. Mom was in pretty good spirits Saturday and Sunday. Hope and Sam came in late Saturday afternoon and I think she enjoyed seeing them a lot ! Rob and Dorothy came over for a while on Sunday and stayed to chat for a little while. I know Mom ate breakfast Sunday and I left prepared food for her on Sunday afternoon but I don't know if she ate it. She seemed to not have much appetite Sunday.
Worrisome is the fact that Gary is in the ICU at St Mary's. Please say a prayer for him. His diabetes is acting up. He came out to say hello to me when I got there Sunday and said he was having a bunch of muscle cramps and was in some pain. A half hour later Cathy called and said she couldn't rouse him. She called the ambulance to come get him. His EKG on the ambulance didn't show any heart problems, really. But he had a bunch of Ketones in his blood (Google Diabetic Ketoacidosis to see what this is). Anyway, he was pretty much unresponsive even at the hospital. He did come around enough to ask for his kids but then drifted out again. The medics are going to rule out a stroke today and try to get his diabetes stabilized.
I think Becky is going to spend part of Monday with Mom. I'll be out there on Tuesday and on Wednesday for part of those days. Gary has been Mom's lifeline and we'll be hard pressed if he doesn't come back to the farm. He checks on Mom several times a day, just going over to chat or to sit and keep her company. I don't know how severely this will affect her. I fear she will want to drive herself to St Mary's to see him. I'll be happy to take her when I get out there but she won't remember that I've told her that.
Anyway - it was wonderful to see Hope and Sam ! I hope they made it back to Chattanooga without problems. I'll probably call them tonight to make sure unless they post here of their visit.
That is all for now.
Love,
Amy

I talked to Mom this am. She told me she had driven to Hancock's and bought 2 packs of cigs. Yesterday the story was she drove there to get a hamburger. If she only got 2 packs (YEEKS!!!) that means she will want to go to the store again to get more. Maybe someone could take her a carton. I won't be able to visit this weekend. I need to help Vic out with the kids which will include today, tonight and tomorrow.
Love to all,
B

Hi all,
I just returned from Mom's. She had company - Gary's son Bradley and his friend Ben. Nice enough kids, I guess but both bummed cigarettes off me and/or Mom.
Anyway - I stopped and got some rotisserie chicken t take out there and I had made some marinara with italian sausage that I had planned on sharing with Mom for dinner. I also picked up some pasta to cook for the marinara but.... back to this.
Just about as soon as I walked in MOther said "Amy, I deifed all of these male types out here today!" I asked her how she managed to do that and she said "I just got in my car and drove to Hancocks." Hmm. Well...... I stewed about that for a few minutes, trying to keep a rein on my tongue.
Attempting to change the subject I asked if she had eaten that day. Yep- breakfast. Bacon and eggs...... and for lunch, chicken and corn and broccoli. That sounds good Mom ! I'll bet you're full.
2 minuts later: I am going to indulge myself, she says, and gets down a package of Oreos and eats about 6 of them. Later, she spies a plate on the table and says "See ! I did have breakfast and here is the plate I used" then she walked to the little fridge, pulled out a huge sweetroll and said "And that is what I ate!" I said... "Mom, not 5 minutes ago you told me you had bacon and eggs !" She said "Well, I had 2 breakfasts." She's quick.
Anyway - I ended up sitting and listening to her chat with Bradley and Ben about the farm and us kids and the like. It was interesting when Ben asked her how many kids her kids have she only mentioned two of the kids and three of the grandkids. Her mind simply can't hold a thought for long.
At one point, she was walking across the living room and I asked her where her cane was. She said it was in the corner by her chair. I looked. No care. I asked her again and she said she must have left it in the car when she went to the store. So - I went to the garage, checked the car, got her cane, and oh yeah, I hid the keys. She won't be driving anywhere soon.
I left the food in the care of Brad and Ben, checked ot make sure Brad knew how to cook pasta and left it with them to have dinner with Mom. Gary is out until late tonight as he has gone to Tazwell for the car races.
Guys - this is very hard for me. I have never really thought of myself as a control freak but this situation with a defiant mom is really tweaking my switches. I know it isn't her fault and I can't say I am mad at her..... but I am mad. And I realize I'm pretty helpless except to do things like hide her keys and have meals with her sometimes. I cannot quit work and I know Rob will be installed there soon during the day. But it's not an easy road.
I'll be going out there tomorrow I suppose. I'll check to see that she at least eats lunch (I hope) Also, Hope and Sam are supposed to come up sometime this weekend. We'll see how that visit goes.
That is my update.

Love yas,
a

Hi all,
Just to keep you posted on the frequecy of happenings. this am I called Mom as usual. We were chit chatting about much of nothing. Trying to find something to talk about, I asked her how her new panties washed up..."did they shrink, or anything Mom". She "no, I just put them in the washer and then turned my rinse water to hot and then put them in the drainer to dry". ?>*&^#!@
I said "you put your PANTIES in the drainer to dry?" She said "NO my dishes".
Mid stream.
She also talked about being bored. She said if she gets too bored she'll just hop in her car and go somewhere. She said she drove down to Hancock's the other day and got a hamburger. (I doubt she did that).
She said she drove over to Cindy's last night. Did she or didn't she? I have no idea.
All for now.
B

Well, this is Wed, the day after our rather emotional meeting with Mom and Dr. Perra and us. Tuesday evening she had a conversation with Aunt Maggie and told her what a wonderful day she had had. Maggie asked her what made it so good and Mom said she had a doc. appt. and everybody was there. She was SO happy. Maggie asked her why everybody was there and she told her that none of us believe her when she tells us Dr. Perra tells her she is doing fine. She said, we all wanted to come here it for ourselves. She was very tickled that we were there.
About an hour after Maggie called her I called her again to check on her. After we talked about the weather and such, I asked her what she had done the rest of the day. She told me.."Well, Scott came by and picked me up early cause I had an appt. w/ Dr. Perra." (realizing she had not remembered us being there) I asked her what Dr. Perra had to say. Mom replied that Dr. Perra told her she was doing really good and to keep on doing whatever she was doing. I asked Mom about her weight gain or loss and she told me there was no change. Then she told me Scott took her to Hancock's to eat lunch. After that, she was too worn out to go to the store (all of that was true).
I called her this am as usual and asked her about her morning and what she had eaten for breakfast. She told me something different than she told Gary when he had asked her. I asked Gary to go over and look for any signs that she had even eaten at all. Yes...believe it or not, she had indeed eaten. There was a plate in the sink and eggs shells were on the counter. When I called her, there was so much static on her line that I told her to hang up and I'd call her on her cell phone. It went straight to voice mail. When I called her back and tried to explain how to press the "end" button to make the phone come back on she couldn't grasp how to do that. But, as usual, she was happy and laughing on the phone.
Gary went back over there and she told him she was going to take herself to the store (YEEKS!!) Don't worry, Gary knows not to let her drive. So he ended up taking her. Before they left for the store she started telling him about the meeting with Dr. Perra and all of us. She was cursing mad. Said she didn't need anybody to stay with her..etc,etc. Don't worry...Mom still doesn't use the Lord's name in vain, nor does she use the "F" word. Gary difused her anger and they went to the store. As usual, Mom bought Hershey bars, Snickers, M&M's, Mrs. Werther's candy, pastries, do-nuts, honey buns and her usual other sweets. It's really hard to get her to buy anything other than candy and sweets.
Anyway, I talked to her at 4:30 today and she has no recall again of the meeting with all of us and Dr. Perra. So, at this time she is happy.
By the way, Ed and I went by to see Mom on Monday and took her to Hancock's, she ate a whole hamburger, a whole order of fries and a whole pint of milk. Scott took her to eat at Hancock's Tuesday and he said she ate a lot also.
When she's at home by herself, she just forgets to eat.
That's all for now.
Becky

The meeting

Thank you all for coming to Mom's appt with Dr Perra yesterday. It was difficult but not as bad as I had feared. The end result is what we were after though and it is a blessing that she acquiesced. I felt sorry for her though as we were leaving - smacking her cane against the floor and saying "I am capable!" Well of course she is for many things. It is the things she isn't so capable in that are so concerning.
May Kudos to you all for helping her through a moment of real frustration and anger. The "C'mon Mom, we're just scamming the insurance company" line was absolutely great and seemed to give her the 'out' she needed.
Mom is wonderfully giving as a general rule and if she thinks this is all done to help somebody out, who cares ? It accomplishes the goal of having someone with her to watch out for her safety and well-being.

Now..... Becky talked to her last evening and unfortunately Mom didn't recall the fact that we had all been with her at the Dr. office. So, I doubt she will recall that Rob is going to be staying with her during the day. Hopefully that will start soon! I'll get my letter off to the insurance company today to hopefully lend some support to the letter Dr Perra writes so that we can get her ong Term care policy to kick in and Rob can get paid to do what is going to be a frustrating (at times) task.

One step at a time in this for all of us. It seems that our path is an uphill one in many respects. Mom will have good days but she will have bad ones, too. Her path is mostly going to be a sliding one. In the last 2 years I've noticed a definite decline. Yesterday in the Dr office Suzanne asked if she had had a good time at Aunt Maggies. Mom said she did and that they had done 'the usual stuff'. Then Rob asked if it had been hot. Mom said that "It wasn't too bad. But I was there early in the season so the hottest it got was maybe 92 or 93."
Mom doesn't lie, exactly. But when she loses a memory it is a protective thing to 'fill in the blanks' with what sounds, to her mind, reasonable. I really do encourage all of you to read "The 36-Hour Day" and to listen to "The Savvy Caregiver". Rob has loaned us several copies of Savvy Caregiver. I listened to them as I drove to work and then I checked out the DVD from the library and listened to it again. It is a seminar, run by a social worker who is trying to help the family members of those with dementia learn how their loved one's mind doesn't function anymore. It is an eye-opener and I think, will be helpful for all of us to have some understanding that it isn't Mom - it's the condition.
Does Mom have Alzheimer's ? I don't think so. At least, not yet. But she does have dementia and dementia seldom gets better. It may plateau, and the medicine she should have been taking can help it to plateau, but.... she didn't take that medicine while in Texas. She told Aunt M it was a sleeping pill. :-(
Dr Perra is going to refer Mom to a geriatrics assessment center here in Knoxville and that is good news, indeed !! I've only heard about these places, but I understand they do several hours worth of assessment in several different ways. I expect they will experience Mom's tendency to tell the same story over and over and her inability to learn new skills or tasks. After the assessment we will have a much better idea of where she is right now in the language of demetia (Stage 1 or 2 or 3 or whatever). I think it will help us plan better for her.

Hope, I know you wanted to wait on this Dr appt - family meeting thing but too many plans had already been made. Our ends are accomplished and Mom seems to have accepted it. I say seems, because she didn't remember it last night when Becky talked to her. I do hope you can come up this weekend and that your health improves quickly and uneventfully so that you can be a more frequent presence in all of our lives.

I could go on. But I won't. You all have a sweet day and feel free to post here with questions, thoughts, opinions, etc. I put this board up so that we can save some phone calls and so that questions and comments could be shared by all who were interested. Please use it. It can be a valuable tool.

I love you.
Amy

11 Aug 09

I spoke with Mom last night for a while. She sounded pretty happy and pretty 'with it'. I probably opened a can of worms though and here is my reasoning.
I really would like for Mom to voluntarily seek companionship in the form of someone staying with her at least during the day. I talked to her about how nice it was to have company all the time - Mitzi, Aunt M. Talked to her about how it would be nice if we could arrange that for her here. I mentioned that Rob was looking for something to do and that she could at least try it out for a while.
She said she might consider it in the future when she felt she couldn't take care of herself. I reminded her that she didn't like to eat alone and company would give her someone to eat with and ensure that she ate. I also reminded her that she sometimes forgot to take her medicines and they could help with that, too.
Hmm. Well. She said we could talk about it when she gets home.

Next I talked to Aunt Maggie. She says Mom is pretty good - gets out when Maggie tells her they are going to. Has been eating pretty well. Has developed a taste for Sonic Peach milkshakes. Is a little forgetful but then said "But so am I". And then she asked me "What is Aricept for?" I told her it is to try and help Mom's memory improve or at least not get any worse. Aunt Margaret says Mom refuses to take it. Mom says it is a sleeping pill and she sleeps just fine.
Well and so.

Mother has Dr appt on Tuesday at 8:30 with Dr Perra in the St Mary's Towers suite 505. Becky has arranged this appt to be a meeting with Dr Perra to outline (we hope) a plan of care for Mom. Without a Plan of Care (POC) the insurance company won't pay for any services. All of who can should try to be there as it is a 'family meeting' of sorts with the Doc and Mom. But... Mom doesn't know about it - other than she is going for a check up. We'll see how that goes.

I have talked to Scot tand I hope he understands that I am NOT after cntrol of this situation, but I am after ensuring Mom's safety. He said he found his copy of the limited power of attorney he has. I don't know about the insurances stuff yet. I hope to talk to him again today. He said he'd take care of Mom during the day, that he could resign from Knox-Tenn, but I don't know if the board will let him resign. That, too, needs to be seen.

Anyway - Scott and Cindy are in Nashville this weekend to see Jodi. Scott is willing to pick Mom up and bring her home since he is going to be in Nashville anyway. I think that is probably a good idea. I don't care who gets Mom to accept what is coming but Scott is most likely to since she seems to "obey" his dictates. Again, we'll see.

Rob has been kind enough to provide copies of the audio of a program designed to help people who are experiencing the mental decline of a loved one. I have listened to it and hope all the rest of you will, too. I have two copies of it, please let me know if you want the CDs and I will get them to you. It's pretty sobering.

He also gave me a VCR tape of a movie that was quite well respected about a duaghter dealing with a declining parent. I've ordered the DVD version of this so any who want to see it can do so if they don't hae a VCR anymore. It should be here in a week or so. Again, let me know.

The quest continues.