I've been reading discharge horror stories. Anyone who has had a smattering of experience with the modern medical establishment will recognize these stories or have experienced personally some of the same things. It's like the one person writes, that the '...left hand doesn't know what the right hand is doing.' You can't assume anything. You have to follow up everything. It's exhausting mentally to remember what you've done, who you've called, etc.

An article about a new film named "Assisted Living" intrigues me. Anything that can touch hearts and make laughter out of a situation that too often produces anger and depression is worth seeing...

Mom seems to be becoming more morose, obsessing about Dad...beyond normal grief. I still feel it's in connection with her mental state in general. Age-induced dementia creeping in more and more, her life-long emotional fragility, and her deep grief for the loss of Dad, all contribute to her withdrawal from life mixed with deep-seated anger at her circumstances. She lashes out at family members not present, when I'm with her. One day she's thankful for where she lives, the next she hates it. I am not where she is...yet. But I can imagine being thankful for having something, but still hating not having another preferred choice. It's always easier to complain than be positive!

This past week, we're realizing it might not be long before Mom may need skilled care. It could be a long time. Hard to say. But things slowly but surely are changing.

I wrote to my sisters tonight, saying...

Sharon:

Betty and I dropped off vinyl mattress and pillow covers tonight for Mom's bed which will be used in conjunction with on-top pads, as well as pull-ups at night only (for now). Night only for now because that's all it appears she needs them for since she can still get to the bathroom in the daytime, only has limited incontinence in the daytime, so pads should be enough. This will save money since pull-ups are very pricey.

Betty brought a battery charger. We tried jumping but no go. Tomorrow I'll go back over and (hopefully) get the car started. We'll then go get the car washed and vacuumed, if not before Saturday, then ON Saturday (since Don's Car Wash may not be available in the evenings after my work during the weekdays, and I ain't washing/vacuuming this out myself...sorry, I'm too old and lazy...!)

There is NO current registration, plate tags, and insurance on the car. If we do this, we do this risking a ticket and an accident. If anyone has anything to say before we try this, say it now! The car looks pretty clean to me anyways, but it's up to majority rules...Let me know your thoughts on this. Yes, we _could_ look into short-term insurance, but I say it's not worth it - a lot of trouble plus money Mom can't afford. I say, take a chance, OR leave it parked until a person is interested, drives it, and buys it...

Mom doesn't know it yet, but we are going to try the hairdresser there for her soon. I say 'soon' because I know Mom likes Alice, likes to get out, etc., but the problem with having a set appointment is that it's not always possible to get Mom them when she's in 'sleeping mode', which is unfair to Alice. Alice has been more than reasonable with Mom missing appointments here and there, sometimes 2 in a row. And if that is all there was to it, that would be one thing, but Mom is increasingly becoming internalized, either obsessing on Dad and weeping, repeating 'love of my life' over and over, you don't know what to say or do, there IS nothing to say or do. She also gets very mean and talks about other people negatively which I hate hearing. In other words, it's not only not fun, it's painful to be with her. Physical ailments can be coped with. Grieving can be coped with and the person passed on talked about and cherished. But Mom's reactions are becoming increasingly more negative and hard to deal with on an emotional level for her and for me. Both of you would not like it (you probably have had it happen to a degree yourselves, probably, right?) being with Mom, her saying "I want to be dead..." over and over, crying, saying cruel hurtful things about you both. I'd rather be able to call Mom or just drop in on her when there is no deadline to get to a hair appointment, and if she's in a good mood, THEN take her out. HAVING to take her out, even when dead asleep and rousing her, lifting her, which isn't easy, etc., and/or coping with deep grief and/or anger...no, life is too short you guys. I'll try taking her to Alice this week and even next, but the first time I hit another snag, that is it...

Delphine wrote me today about...

They served Mom with papers yesterday on the guardianship. She always says she can't read because she can't see. Couldn't even read the numerous cards she has recieved, I read them to her. Yet she managed to read these papers. The social worker was with her when they gave her the papers & at first she seemed to take it well. But then decided to read them & they said did she get mad. She was mad as a wet hen. Said she took care of her Mom for 10 yrs. & she never did this to her Mom. Can't figure out why I'm doing this to her - Sound familiar???

What she chooses not to remember is HER MOM didn't drive a car so didn't insist on driving when Drs. said she was a danger because she could have a stroke. HER MOM took her insulin & meds every day & didn't keep saying no I'll take it later & then not take it at all. HER MOM when she finally had to go in the nursing home didn't like it either but accepted it & tried to make the best of it by joining activities & crafts, I have a little felt pillow that grandma made in the nursing home. But you tell Mom to join things & "No I've never done that before & sure as Hell not going to start now." So all she does is sit & mope & try to think of ways to escape.

Complained about being in the wheelchair because her butt hurts from sitting all the time , shoulders hurt from being in the wheelchair, feet swell because all she does is sit. I suggested a walker so she can walk more & she said they offered her one but I'll be damned if I'm going to depend on a walker. I said well you are depending on a wheelchair it seems to me a walker would be better than a wheelchair, she says no, because I can sit in the wheelchair. HUH?????

Tells me how Her MOM had a goofy roommate so she went right up tp Hallock & made them put grandma in a room with someone more like her that she could visit with & all. Well Mom didn't like her roommate cause she moaned all the time. So we moved her 2 times now & she didn't like them either & couldn't figure out why they moved her in the first place because she liked the other lady. again I say HUH?????

She took grandma from her home to Bemidji & took care of her for 5 or 8 yrs. again grandma was willing. even when offered Mom refused to give up anything to live with anyone. When grandma got too ill with diabetes for Mom to take care of her anymore, Mom did not quit her job to be with her 24 hrs. she took grandma right to Hallock & put her in the nursing home where grandma died. But Mom keeps saying grandma was in the nursing home & hated it there so she went right up & took her out of the nursing home & took care of her 8 yrs.

The social worker yesterday said it's like dealing with a 2 yr. old & I said ya & I've been doing it all alone for over 2 years. She just shook her head & said I don't know how you did it & you sure did good to keep her at home that long.

LOL Del

Delphine email from today...:

I wonder where our moms got this swearing kick. Boy, you'd never hear grandma swear. My Mom even uses th "F" word. You guys have been going through this for over 2 yrs. with your Mom & me only a little over a month & I'm about nuts. At least my Mom doesn't have a phone. They can have their phones transferred to their rooms as I had a friend in there just recuperating from a cracked pelvic. And she had her phone hooked up temporarily. But I'm not going to have one put in for Mom as she'd be calling all hrs. Calling Bill, & I'm sure calling an atty. to get her out.

She can also have some of her own furniture & T.V. etc. But she has a fit if I mention it as she doesn't need it because she's going home tomorrow anyhow. So I don't agravate the situation by bringing any personal things up there.

Audrey told me last night that Mom has tried & tried to get out of there & has tried almost every door in the place but they all have alarms on them so she gets caught every time & now because she does try to leave they really watch her close.

She also has a sensor on & she told me she doesn't like that . She thinks it's an ID bracelet or did at first anyhow. But told me Mon. that she just chews it off so they put it on her ankle now & then but what they don't know is she can chew it off her ankle too. Boy 91 & she's more flexible that I am *laugh* [Gotta go for my walk as I skipped yesterday ] LOL Delphine...

Mmmmm...Wow, Aunt Pat must be pretty darned flexible! I don't think I could get my ankle up that far...but then, if you're determined...!!

Delphine emailed this to Betty today...

If only our parents could realize we are taking care of them the best way we can, instead of being so mean & ornery about it, & thinking we are trying to hurt them. Mom was in a horrible mood yesterday. It'd been 4 days since I'd seen her & she has no idea on time but was in a bad mood. Wasn't glad to see me at all, it didn't seem, but a lady named Eva who I guess she knew even when dad was still here, came in while I was there & boy was she glad to see her, her whole face lit up. But with me it was bitch & complain the whole time.

She said as soon as she got out of there & got home she was getting in her car & driving to Minn. I said how can you drive to Minn. when you can't even find you way around T. Or C. anymore. She said well I'm just going to walk out those doors one day & keep walking & I'll walk to Minn. Or I'll hitch hike , Someone will pick me up that knows how to get there & will take me to Minn. I told her there is nothing in MInn. anymore what will you do when you get there? She said well they have apts. there you know, or I'll go live with Harriet. HMMMMM!!!!!! How would you like the 2 of them up there living together?!

Our mother's sister, Alberta, is nine years older than Mom (which makes Alberta, aka Aunt Pat, 90 years old...) In recent weeks, Aunt Pat had a stroke which was severe enough to incapitate her, making it necessary to put in her skilled care at least temporarily. With hard work, she has improved noticably, but is still frail physically, and even more tenuous mentally. A male friend, whether from true affection or selfish motivations, is fighting for her to return home, against the immediate family's wishes. It's causing a lot of tension, anger, and STRESS, as you might imagine. Below is a bit of what's been going on as explained by Aunt Pat's daughter Delphine in emails to my sisters and I, as well as responses to her from us...

______________________________

From: Del
To: Betty
Sent: Wednesday, August 06, 2003 9:24 AM
Subject: Anger


When you first put your mom in asstisted care, I know there was tremendous Anger on her part. She called Mom numerous times & was so mad.

Boy, my Mom is raising cain. & Bill sure didn't help. He is now out of the house & banned from the care center. On Saturday he took it upon himself to go to the home & take Mom out. She had a security bracelet on but he told the gal he was just going out for a smoke. So she let them out & he took Mom right to the car & home.

It was quite a day as Mom wouldn't budge & Bill had a loaded arsenal of guns & threatened to blow us all away if we tried to take her. He has Mom convinced we all hate her, are trying to get rid of her, that he's the only one who loves her & we have her in a facility equal to a Nazi prison camp. "Only thing missing is the swastikas on the wall..."

Nursing home had to call in the police since they were responsible should she get hurt. She walks now but very weak & not very far.

The police sargeant finally talked her into going with him to the hospital to make sure she was O.K. All sorts of social workers got involved. I have no power as Mom would not give me any as she thought you guys did your folks dirt with Sharon's power of atty.

Anyhow she raved about suicide & all so it got down to either being taken to Las Cruces in handcuffs by police to a psych ward or calming down & going back to the nursing home. So we finally got her back in the home.

Everyone - police, social workers, hospital staff, and nursing home staff - all say I need to get Legal guardianship. I went to a lawyer on Tuesday with doctor letters & told him the story; he says I have no grounds for guardianship, that I need a doctor to actually state she needs it & then still have to prove it in a court of law.

All I can say is if she manages to go back home I am going to insist on some sort of document that I am not responsible for what ever happens.

Would you please forward this to Trish too as I don't know how to send to more than one & don't want to write it all over.

Love Del
_________________________

Delphine:

That is SO nuts, what they're making you go through. I think I can speak for Betty and I, having gone through a similar but not as bad situation with our Mom (I'm not sure you know about it, but Mom also had a fit once and was taken to psych ward for a week of evaluation, etc., but no guns were involved!), that we have great sympathy for what you're going through! It's definitely analogous to parents and rebelous teens, except the teens are the elderly parents. We get it from both ends...!! I'm leaving explicit word to shoot me if I try that crap when I'm older...!

My mother's sister, my Aunt Pat, recently had a stroke. It has brought our family closer together, that is, the cousins. Aunt Pat's daughter, Delphine, and her daughter Deanna, are both emailing and chatting with my sisters and myself now, about our respective mothers and the similarity of their lives. Aunt Pat is 9 years older and definitely more infirm both physically and mentally, but our mother isn't far behind her. Part of Mom's situation is desire to live - she could be both physically and mentally healthier, but has chosen not to make that a priority...but that is probably a very poor choice of words. I don't think it's as easy as that. Grief is so powerful.

These are some thoughts between cousins...:
________________________

From: "Del and Lee"
To: "Trish Lewis"
Subject: Aunt Pat
Date: Mon, 28 Jul 2003

I don`t know why our mothers had to get this way. I truly hope it doesn`t happen to me if I live to be their ages.

Mom will not use or can`t remember or comprehend to use her call light when she needs to get up & fell 3 times this week trying to go to the bathroom herself. Also having a little trouble with Bill as Mom begs him to take her home & he seems to want to try. He called me all in a panic Sat. & told me I had to get down to the home right away as Mom was all dressed & had her shoes on & she was going home. I said well can she walk & he said no she`s in the wheelchair, I said well then how can she go home & he said I don`t know but she says she is. I knew she would get upset if I tried to talk to her so I called the home back & talked to the nurse. She chuckled & said I`ll go see what`s going on. Called a while later & got a man & he said Oh everything is fine she`s sitting in her wheelchair watching T.V.

I having something I guess You`d say it`s funny or maybe just sad. 3 weeks after your father passed I was with Mom & she was all excited because she said Harriet had called her & she had a boyfriend & they were moving back here as her boyfriend had never been out of Minn. & wanted to see N.M. Said Harriet told her boyfriend she had a home here & all furnished. I told Mom Uncle Gordon has aonly been gone 3 weeks I can`t believe Aunt Harriet has boyfriend already that she know well enuff to move with. But Mom was adament that it was true & talked about it for weeks & kept
wondering when they would get here & told all Your Mom`s friends who asked about Harriet about it.

Love Del
_____

You did exactly what we would have done - we've learned through experience that there's no sense in getting excited anymore because half the time it's not what you think. You check up on things, keep yourself in the loop, love them as they are, and then let go of it. You appreciate the moments you get, because that's all that's left. Sometimes it's too much, and when it is, you have a cry and you go on. At other times, you're with them and they're just like they used to be and it's a blessing from God.

Personally, I plan on becoming a crazy old lady with lots of cats...Oops, that's me already (except for the cats...!)

P.S.: About Mom and a boyfriend, and moving back to NM...I think I just might believe Mom told your Mom that...she was a bit overzealous in the romantic department for a bit, craving affection as it were. We even got complaints (lovingly given, bless the staff) about some male residents complaining of Mom just popping into their rooms, or being a little
over-friendly. I didn't know whether to be shocked or laugh out loud. I took it seriously, but understood how that could happen. The facility's staff also understood, and we took it a day at a time, and eventually it passed (although I did notice Mom try to give a friendly kiss goodbye to a male resident as we left for the airport 4 weeks ago and he avoided her, saying he was shy...!) Dreams...that's all she had and has, about what could be, and what once was...
_____

This is Betty from my work. Trish forwarded this onto me.

All we can do is encourage each other.

All I can say is: I hope I never get that way either.

As someone put it once; when your loved ones are this way, think of it as you are standing in a house looking out a window and once in a while that person you love passes by and you can see "each other". Those are the times like Trish said to cherish - "when they are passing by" the window.

Love always - Betty

Mom has been gone nearly a month now, visiting Sharon in Chicago. While it's wonderful having a break, it's a two-edged sword. I also miss her very much.

I wish I could find more ways to stimulate conversation with Mom when she's here. I've felt at times as though I'm missing precious opportunities to connect with her, either not knowing what to say, or being distracted during our times together. It's frustrating, not knowing how to talk to someone you love so much.

Mom's very quiet compared to the way she used to be. There are moments when she comes alive, but overall, definitely more quiet. It's like she's drawing within more, and we are being left behind. I imagine a whole world of memories inside her that she floats along day and night, whether in sleep or lost in thought. Train whistles immediately cause her pain, reminding her of Dad. Like Job, she continues to have a struggle with God about his wisdom in taking Dad but not her.

There's a side to Mom I've seen more of, though...it's her ability to have fun, to laugh...I saw some of it growing up, but I was a kid then, and she was busy being a mother and wife. Now, while still being mother and daughter, we are also women, hanging out together. The dynamics have changed. Time pushes us sometimes very reluctantly forward, into the mystery of the future. We laugh together at it...

And now, an excerpt from “The Nearly Departed” by Brenda Cullerton:

“Sometimes, I feel as if I work up one morning at the age of forty-six and my life went blank. It crashed. Until that morning, a year ago, life was something that happened to me, something I could respond and react to. Now there’s nothing. Nothing but this goddamn computer and the visits to Ridgefield.

“What am I doing, strangling in the roots of my own backyard, so entangled and enmeshed in my parents’ lives, my skin breaks out in red welts? They itch. But when I scratch, they bleed and leave scabs. ‘It’s probably hives,’ my doctor tells me. I think it’s living in my parents’ skin. It’s all the waiting and worrying, the shuttling not just between their houses but between these periods of comic relief and disbelief, of intensive caring, apathy, and callousness. I’m literally itching to get rid of them.

“…Dad’s condition is getting steadily worse. He sleeps a lot. Not even the crinkle of an aluminum wrapper around a Hershey bar snaps him out of it. It’s been four months since the January morning when paramedics lowered him down from the ambulance on a gurney. ‘Surprise!’ he’d said with a cackle. ‘I’m baaaack!’ Dad had lost virtually everything by then except his sense of humor.”

Ah yes, I can relate…