HHS Nursing Home Quality Initiative (NHQI)

Something called the HHS Nursing Home Quality Initiative (NHQI) is making a significant difference in the care of our elderly parents. One interesting point they mentioned is that "...As part of the quality initiatives, ...seven states [will] participate in comprehensive background check programs for new workers in long-term care facilities, as another way to combat abuse and neglect in these facilities."

Christmas 2004

Mom didn't go out to Betty's for Christmas this year. Between the cold weather, and her sleeping during the day, Betty went in to see her while Chris and I were at his parents.

Betty later sent me pictures she took of her visit with Mom...

ME: Mom's eyes sure look more and more odd, don't they? Her eye doctor claims they are doing well as far as glacoma goes, and Mom doesn't complain on being able to see TV or read, so I guess they're OK, but one seems to be 'wandering', and that makes me wonder...

BETTY: I thought Mom looked terrible and she was really weak. I had to even help her open the presents.

ME: I thought even from the photos that she looked weak...and she wasn't very clear on the phone, didn't seem to follow me.

Not sure what this all means, but looking over the past 3 years, I see a definite pattern of Mom slowly leaving us...

Eye of the Storm

We're in the eye of the storm, right now, where Mom is settled into a nice place to live, her physical health is consistently good while her mental health is diminishing a wee bit but still OK. It won't be that way for long, though, and we all sense that, and cherish what little time we have left with her. Sometimes our lives get so busy, we let weeks slip by without more than mere short visits or calls. When Mom is up to it, we take her out, but it's always a gamble on if she will be feeling well enough, or starts out OK and then has accidents while out. While it is true that we all end up going backwards at the end to a state similar to our childhood, the one difference is that we were much smaller then. Handling a large adult that barely can walk, and cannot change their underwear and clothes after having an accident is a much more challenging - and scarey - task to contemplate. You balance keeping them safe and dignified with trying to continue to share your life with them. It's a tough call sometimes...

I usually hate most of the so-called 'cute' messages many women forward in emails to other women. I find them irritating and condescending, and some are just plain badly written, not funny at all, and just sappy.

The one below is a bit more realistic and therefore IS amusing...

POSITION :
Mother, Mom, Mama, Mommy, Ma

JOB DESCRIPTION :
Long term, team players needed, for challenging permanent work in an, often chaotic environment. Candidates must possess excellent communication and organizational skills and be willing to work variable hours, which will include evenings and weekends and frequent 24 hour shifts on call. Some overnight travel required, including trips to primitive camping sites on rainy weekends and endless sports tournaments in far away cities. Travel expenses not reimbursed. Extensive courier duties also required.

RESPONSIBILITIES :
The rest of your life. Must be willing to be hated, at least temporarily, until someone needs $5. Must be willing to bite tongue repeatedly. Also, must possess the physical stamina of a pack mule and be able to go from zero to 60 mph in three seconds flat in case, this time, the screams from the backyard are not someone just crying wolf. Must be willing to face stimulating technical challenges, such as small gadget repair, mysteriously sluggish toilets and stuck zippers. Must screen phone calls, maintain calendars and coordinate production of multiple homework projects. Must have ability to plan and organize social gatherings for clients of all ages and mental outlooks. Must be willing to be indispensable one minute, an embarrassment the next. Must handle assembly and product safety testing of a half million cheap, plastic toys, and battery operated devices. Must always hope for the best but be prepared for the worst. Must assume final, complete accountability for the quality of the end product. Responsibilities also include floor maintenance and janitorial work throughout the facility.

POSSIBILITY FOR ADVANCEMENT & PROMOTION :
Virtually none. Your job is to remain in the same position for years, without complaining, constantly retraining and updating your skills, so that those in your charge can ultimately surpass you

PREVIOUS EXPERIENCE :
None required unfortunately. On-the-job training offered on a continually exhausting basis.

WAGES AND COMPENSATION :
Get this! You pay them! Offering frequent raises and bonuses. A balloon payment is due when they turn 18 because of the assumption that college will help them become financially independent. When you die, you give them whatever is left. The oddest thing about this reverse-salary scheme is that you actually enjoy it and wish you could only do more.

BENEFITS :
While no health or dental insurance, no pension, no tuition reimbursement, no paid holidays and no stock options are offered; this job supplies limitless opportunities for personal growth and free hugs for life if you play your cards right.

My adult heart breaks with the recognition of her age as the child in me wants to pull at her skirts to look upon her as she was when I was a little girl. The tears that blur my vision smooth the deep creases in her face and leave her skin appearing as flawless as fresh cream poured into a porcelain saucer. I don't want to blink. I am not ready for her to be old.

A woman writes about the passing of the torch between mother and daughter...

I am so sorry to hear about Aunt Pat's episodes. It's very difficult to say what is causing them, to be perfectly frank. Even a neurologist might only be able to say it's probably dementia-related. There is so much about the human brain we just don't understand. It's quite possible that Aunt Pat is dreaming and just can't tell the difference between dreaming and reality anymore. I can imagine that line being easily blurred if you are older, your energy much less, your body including your mind not working as well as it used to, etc. I can also imagine how painful it is to watch someone you love go through that. I hope Delphine does go ahead and gets married, that she is able to share these concerns with her husband-to-be, and that he can be a blessing to her in this difficult time...

Otherwise
by Jane Kenyon

I got out of bed
on two strong legs.
It might have been
otherwise. I ate
cereal, sweet
milk, ripe, flawless
peach. It might
have been otherwise.
I took the dog uphill
to the birch wood.
All morning I did
the work I love.

At noon I lay down
with my mate. It might
have been otherwise.
We ate dinner together
at a table with silver
candlesticks. It might
have been otherwise.
I slept in a bed
in a room with paintings
on the walls, and
planned another day
just like this day.
But one day, I know,
it will be otherwise.

He told me I already had -- my name was always, already written down in the Book, on high. I, sometime I think I'm seeing all the people right now, 'cause they in my dreams so much, and I believe this is the way you're gonna see your family.

This quote, from my earlier post about a daughter watching her mother slip away, is from the mother herself. It caught my eye because it reminded me of something. It then dawned on me it's because it's similar to what Mom says about dreams. Sleep is a blessing to her, because she is with those she loves in them, especially Dad...

"I remember my childhood watching you work hard to make life easier for me. I remember you making a home out of a house -- houses -- condemned. I heard you outside in the chill of the morning chopping wood to make a fire, so that the house would be warm when I got out of bed. I heard you singing in the kitchen and the smell of food cooking to feed me. I saw you come home tired from working all day every day, to ensure we had money to meet our needs."

"I believe while I was sleeping, you were up praying. I know now how when I complained about the shoes I wore and my clothes being hand-me-down or out of style, that I really had a hidden treasure -- a treasure more valuable than brand name materials. I know now that clothes will either out – I will either outgrow and/or fashion will continue to change, shoes will become old and worn, but love is from everlasting to everlasting."

"You represent the tree by the rivers of waters bearing fruits of the spirit of God. I glorify God in his infinite wisdom that created love and called it 'Mother.'"

A daughter writes about - and remembers - her mother, as she watches her die...

I know exactly what my cousin Delphine means. I'm seeing it more and more with my Mom (who is the sister to her mom...) My sister Betty and I visit at least every other week together with Mom, but periodically also pop in at other times. Inbetween we maintain contact with the facility she lives in to make sure things are OK for her and how she's doing.

However, it's getting increasingly difficult to just visit with her, to hold a conversation, to find things to even talk about. How many times can you comfort someone about losing their spouse whom they loved so much? The words have long ago become empty as you say them because you know they don't help. You go through the motions and end up feeling horrible and you don't know why. You try to do all the right things but you feel like you've done the opposite.

We're in a new age where people are living longer, but not necessarily living better. The more I think about it, the more I am convinced that if I face old age, I will make sure I plan things so I suffer least, and burden less. Exactly how I will do this, I am exploring as we speak, but I don't want to just exist, and exist in pain. It does no honor to anyone...

My mother Alberta, or Pat, is in a nursing home. She will soon be 92 on July 13th. I take her out to get her hair done once a week. We usually go on Tuesday, but I was out of town so made I it for Thursday this week. She is usually so eager to get out and after the hairdresser I take her out to eat.

When I got to the nursing home Thursday, Mom was sound asleep in her wheelchair. I called her name and she looked up at me sort of blankly. I said, "Are you ready to go get our hair done?"

She said in a very low voice that I could hardly hear, "I guess I am supposed to, huh?"

I said, "Well, we were supposed to go Tuesday, but I was gone so I have one for today which is Thursday."

She said, "What day is it?"

I said, "Thursday. Do you want to go or are you too tired?"

Again in a very weak and low voice she said, "Too tired. I guess I'll wait 'til Tuesday."

So I went alone. I'm not even sure she realized it was me or just thought I was one of the nurses waking her up to take her vitals again...

Over 10 years ago when Mom's third husband was living she had some surgery done on a tear duct. For some reason that eye lid over the tear duct is now severely inflamed. So I talked to her nurse and asked her to have the doctor look at it and maybe prescribe some drops or something. Her first comment was, who is her eye doctor? I told her who it is but I said he is in Las Cruces which is 75 miles away and I cannot and will not take Mom there as she is almost totally incontinent now and even though she has protection and I have a rubber sheet in my car I can't take her that far and be gone for that many hours with her incontinency. I just want the doctor here to see what he can do.

Recently Mom fell somehow and fractured two ribs. No one saw her or discovered that she fell but she complained about her side hurting so I took her for x-rays and sure enough she had two fractured ribs. I was then gone for two weeks on a trip. When I came home I asked how her side was and she looked at me puzzled. She had no memory at all that she had been in such pain with the ribs. Then just two days later she fell again and this time the nurse found her on the floor. She bumped her head and got a small cut over one eye. Face turned black and blue and she bent her glasses real bad so I took her to the optometrist and he straightened her glasses. I worry about the time that she will have one of these falls and really break her hip or some such thing. She is failing daily now and for a lady who never looked her years before, they are really piling up now; the age is coming through.

[Posted for Delphine]

We're all going to die. The question is, until then, how will we live? Kitty spent her last months doing the things she loved with the people she loved. She endured pain and discomfort as her body broke down, but nothing overwhelming, thanks to modern pain medications. And in her last days, the people surrounding her, her family and her hospice caregivers, were determined to treat her with dignity, tender care, and love. And that's exactly what they did.

In connection with yesterday's post, I came across this today. It made me think of how Betty couldn't understand (can any us?) why God allows people to hang onto life past when they want to be here. The story addresses how people can make the very end more comforting, that compassion is so important because when we help others we're helping ourselves. But it still doesn't address what comes before. What comes between 'life', and 'the waiting room'. For many people, one doesn't transition neatly into the other. Sometimes there are periods that can last for years where people's bodies are here, but their spirit is gone.

Da Mouse says:
want to hear about Mom today?
BettyBoop says:
Yes, write me about it and I will be right back.
Da Mouse says:
Picked Mom up at 2pm, wasn't awake. Got her up by 2:30 (!) After much hassle with wheelchairs and walkers and parking and...sigh...got her there 5 min late to have her have to go potty. Eventually saw Dr. Tufte. Glacoma good, eyes not bad. Got subscription that couldn't be filled there. Had to go to vision assoc in center mall. more hassles. Got ice cream at ColdStone, more potty trips...and poop mess I had to wipe her down and clean best I could...her glasses will be in in 10 days, I pick up or they mail, can't remember which. I took Eventide staff to task about losing them before and risk now. I was told to talk to management. I'll research what other institutions have done for kleptomaniac geriatrics and suggest they do the same!! Someone stealing hearing aids, dentures...and glasses, three of a person's most expensive things, as they say happens 'often', is NOT acceptable...
BettyBoop says:
Wholly cow what a day!! You have more patience and love to handle Mom than I am afraid I do. I am ashamed to admit. Where was the poopy mess at?
Da Mouse says:
Coldstone
BettyBoop says:
How did she react?
Da Mouse says:
We just laughed because it smelled so bad and I made a big fuss about that as I cleaned her up, better to laugh than cry...
BettyBoop says:
so true. Would there have been anyway at all to have had Eventide have her at least ready? I have you have tried before but man!!
Da Mouse says:
I pointed out to Eventide that no glasses directly affects her quality of life, she has little that makes her happy and reading is one of them and she can't read if her glasses keep getting 'lost'
BettyBoop says:
And, did she have a diaper on? What did they say then, about the glasses after that comment?
Da Mouse says:
They had her dressed, but she was sleeping...yes, she had diaper on...I took pad for carseat, but forgot spare diaper this time and will try to remember next time, IF there is a next time...They didn't say much, but looked sheepish. What CAN they say? It was shortly after that that she suggested talking to 'manager', and I said will they have anything new to say, I doubt it...I said that out loud to her face...muttered, asked if there was anything else she needed to know about Dr., said goodbye...
BettyBoop says:
at least you spoke your peace
Da Mouse says:
yes, I did, and I didn't lose my cool, but I probably sounded disgusted and frustrated, but nothing wrong with that. I think it would be wrong NOT to stand up for Mom. I will keep you posted after talking to Eventide management, and after I finish research. I'm finding there is a lot about kleptomania and the elderly, but haven't found any ideas for dealing with it in nursing home setting yet...
BettyBoop says:
I have a question.
Da Mouse says:
The thing is, they care for them with love, but they are not trained for addressing mental issues and they have many to deal with, with a dementia unit. Eventide doesn't appear to be very advanced in that regard, unless they're hiding their light under a bushel basket and I'm just not aware of it!
BettyBoop says:
I have often thought myself and wonder if Mom thinks of it too......people want to feel loved and needed. BOTH. When you are in Mom's position in life you do not feel needed anymore. So why does God allow the elderly to have to live this way? I am often puzzled by this. I only ask for others input.
Da Mouse says:
I was just thinking that today myself. Mom often asks it, too, did you know that? She feels there's not point to just existing, and that's what she feels she is doing. I dunno, Betty, I really don't. Maybe it's just the way it is for some people because of their mindset. Maybe if Mom had the ability to get over the hump about missing Dad, she would feel better about herself and life in genera
BettyBoop says:
But why? Why, does God still want them here?
Da Mouse says:
She told me today when I said, I always thought of you as strong and having a great self-esteem, and she said, "No more..." Well, that just makes me think that as nice as her love for Dad was, it was in a way unhealthy. You shouldn't wrap up your whole life in one person. You need to be whole yourself before you can give yourself to another. Grieving for Dad is one thing, but Mom is in a way grieving for herself, for the person she wishes she had been? or was?
BettyBoop says:
For some benefit to us??
Da Mouse says:
Hard to say...The weird thing is, she grieves like someone who has no hope, which if you think about it, if she was thinking like a Christian, she would have comfort in seeing Dad again, just miss him now. She grieves like there is no hope...
BettyBoop says:
I agree with what you said above. I think about Bill and if he dies before me; I cherish him as much and now we have lived together 35 years and hopefully make it to 50; but I want a quality of life even after. I want to grieve but not wallow it forever. [I know. I have seen the same in her and she even questions heaven and God...her whole being of her faith and desire for anything of God is gone.]
Da Mouse says:
Which isn't surprising since she has had anger as a friend all her life, to coin a phrase. Where it came from initially, I would love to know. Anger just doesn't appear out of nowhere. There is something way back there, and darned if I know what it might be...
BettyBoop says:
me either....but I never thought she would end up like this.
Da Mouse says:
Dad saw something in her when she was in the flower of her youth, a happiness he brought out in her, and she reflected back at him. He saw something we'll never see, but I can imagine, and when I look into their faces in their early photographs, I smile, because I can glimpse a wee bit of it then, and know they were so happy...
BettyBoop says:
I feel just the same. I see in Mom's eyes and lost soul. One with fear and saddness.
Da Mouse says:
yep
BettyBoop says:
a lost soul and a sadness that swells over me; that I don't want to embrace... and have no choice.
Da Mouse says:
ain't it the truth...you can abandon your parents, but they'd still be in your mind and heart...
BettyBoop says:
thanks for being there and listening. Bets
Da Mouse says:
same here. I sound tough, but I'm a softy at heart
BettyBoop says:
OHHHH, I know that

A good thing? Maybe. Or maybe just an expensive, temporary gadget disguised in good intentions...

Aunt Pat has scared everyone a little. Cousin Delphine writes:

We were in Arizona for a week. Got back Tuesday. So missed our beauty shop appointment but got one for Wednesday. So I went and got Mom and while at the nursing home they told me Mom is refusing to eat. She started this in April but I guess it is getting worse. She will eat a little breakfast but no other meals. Is becoming very weak and extremely shakey because of it.

She also is hiding all her pills in her bra so as not to take them. She has regressed back to what pills she took about 10 yrs ago and can remember what she took but they have all changed over the yrs. Due to different health problems and changes, so she won't take them now as she remembers when she only took 3 and now takes about 7 and she thinks the nursing home doesn't know what she needs and are trying to poison her.

She also remembers way back when she was in nurses training and how terrible that "institution" food was and no way can "institution" food be any good so now refuses to even taste it. I have eaten there with her several times to check it out and I found the food very good. I have asked them to cut her portions in half as if she gets too much it sickens her before she even starts to eat. So hopefully if there is less on her plate she will feel more like eating. I bought her some candy bars since she isn't eating anyhow and some snack pack puddings in hopes that she will at least get something down. They tried putting her in IDPT ( a separate room where a nurse sits right with you to encourage you to eat) and they did that one day but the next day she raised a fuss and refused to go in there. Today at the cafe by where we go to on beauty shop serves chinese food and makes a very good sweet and sour chicken. Two weeks ago I took Mom and she really ate that. I think I will go get her today and take her for that again to see if she will eat.

Betty and I took Mom shopping. She got all kinds of new spring/summer clothes. She had fun! We were both in a big handicapped fitting room with her, helping her in and out of clothes. Quite an operation! Then went to have ice cream together later...

She says she would rather be with Grandpa since he can't be here, and I suppose at moments she really does, but I also notice that when people take the time to do things with her, to engage her, she comes more alive. It is a strange time in a person's life, though. Everyone gets to that stage sooner or later if you live long enough - you feel like you're in a waiting room, not quite here...but not over there, either.

An IM* conversation between Trish aka Da Mouse (Harriet's daughter) and Delphine (Pat's daughter) earlier today:

Delphine says:
Won't keep you just wondered what kind of care your mom gets. Do they keep her bathed or do they let her refuse to be washed?
Da Mouse says:
To be honest, I'm not sure. I think residents can refuse. But they have a far more structured place at Eventide than they did at Moorhead Manor. It was more casual at the Manor and they didn't like to force issues. They try to make things more routine at Eventide.
Delphine says:
I had to get my Atty after them here as Mom stunk so bad Tues. It was awful. My car still stinks My Atty called them and said my guardianship says that I say mom takes showers & that Mom was proven in court unable to make rational decisions as to her care and they bathe Mom & don't give her the option to say no, she said if I have any more trouble she will get after them again.
Da Mouse says:
I would be angry about that, too.
Delphine says:
She is incontinent and stunk of pee when I got her then she wet while the hairdresser was combing out her hair. Thank fully I had bought a rubber sheet and keep on the seat of my car just in case. But they tried to tell she hasn't been incontinent but I see her pee soaked pants all the time. They now put her in a pull up type diaper.
Da Mouse says:
I don't take Mom to an outside hairdresser anymore. She has too many accidents and it's just too difficult.
Delphine says:
I'm afraid I can't much longer either as Mom was so weak Tues. When we left the beauty shop I had to literally shove her into the car from her wheel chair. She couldn't get her legs under at all. She stunk so bad on top of it that I took her right back to the nursing home. Had to get a man to come out & lift her out of the car into the wheel chair.
Da Mouse says:
It's painful to see our mothers this way. I know Mom tells me it stinks getting old, and I can't say I can argue with her.
Delphine says:
You got that right. Unless something happens to us & we die younger we have that to look ahead to. I just hope my mind doesn't go. I think Mom could still be at home if her mind hadn't gone. She probably wouldn't be helpless then either as she would have walked around but she has just let the wheel chair take over now...

*IM - Instant Messenger

Email exchange between Harriet's daughters today...

Betty, have you gotten any phone calls in the last day or so from Mom or Eventide? Mom left me a cryptic message on my office voice mail today about using the phone and getting in hot water for it then laughed and said that's all she'd say...???

Yes...I got a message from her while she was at the nurses station. Here's the deal. She came into the office to use the phone and realize her big toe hurt really bad. Before, she made a call; the nurses looked at it and realized she has an infection in it and then had her sit with a little tub of HOT WATER. She was making a FUNNY!! Get it?

More 'age' humour*:

An elderly Florida woman calls 911 on her cell phone to report that her car has been broken into. She is hysterical as she explains her situation to the dispatcher: "They've stolen the stereo, the steering wheel, the brake pedal, and even the accelerator!" she cries.

The dispatcher says, "Stay calm. An officer is on the way."

A few minutes later, the officer radios in.

"Disregard." He says. "She got into the back seat by mistake."
_______________________________________

Three sisters ages 92, 94, and 96 live in a house together. One night the 96 year old draws a bath. She puts her foot in and pauses. She yells to the other sisters, "Was I getting in or out of the bath?"

The 94 year old yells back, "I don't know. I'll come up and see." She starts up the stairs and pausesÂ…"Was I going up the stairs or down?"

The 92-year-old is sitting at the kitchen table having tea, listening to her sisters. She shakes her head and says, "I sure hope I never get that forgetful, knock on wood." She then yells, "I'll come up and help both of you as soon as I see who's at the door."
_______________________________________

Three retirees, each with a hearing loss, were playing golf one fine March day. One remarked to the other, "Windy, isn't it?"

"No," the second man replied, "it's Thursday."

And the third man chimed in, "So am I. Let's have a beer."
_______________________________________

A little old lady was running up and down the halls in a nursing home. As she walked, she would flip up the hem of her nightgown and say, "Supersex." She walked up to an elderly man in a wheelchair. Flipping her gown at him, she said, "Supersex."

He sat silently for a moment or two and finally answered, "I'll take the soup."
_______________________________________

80-year old Bessie bursts into the recreation room at the retirement home.

She holds her clenched fist in the air and announces, "Anyone who can guess what's in my hand can have sex with me tonight!"

An elderly gentleman in the rear shouts out, "An elephant?"

Bessie thinks a minute and says, "Close enough." _______________________________________

Two elderly ladies had been friends for many decades. Over the years, they had shared all kinds of activities and adventures. Lately, their activities had been limited to meeting a few times a week to play cards.

One day, they were playing cards when one looked at the other and said, "Now don't get mad at me--I know we've been friends for a long time ... but I just can't think of your name! I've thought and thought, but I can't remember it. Please tell me what your name is."

Her friend glared at her. For at least three minutes she just stared and glared at her. Finally she said, "How soon do you need to know?" _______________________________________

As a senior citizen was driving down the freeway, his car phone rang. Answering, he heard his wife's voice urgently warning him, "Herman, I just heard on the news that there's a car going the wrong way on Interstate 77. Please be careful!"

"Hell," said Herman, "It's not just one car. It's hundreds of them!" ______________________________________

Two elderly women were out driving in a large car -- both could barely see over the dashboard. As they were cruising along, they came to an intersection. The stoplight was red, but they just went on through.

The woman in the passenger seat thought to herself "I must be losing it. I could have sworn we just went through a red light." After a few more minutes, they came to another intersection and the light was red again. Again, they went right through.

The woman in the passenger seat was almost sure that the light had been red but was really concerned that she was losing it. She was getting nervous. At the next intersection, sure enough, the light was red, and they went on through. So, she turned to the other woman and said, "Mildred, did you know that we just ran through three red lights in a row? You could have killed us both!"

Mildred turned to her and replied, "Crap, am I driving?"

* - I have great respect for older people, but I also have a sense of humour and feel we need to be able to laugh at ourselves...

Being Irish - and having a wickedly black sense of humour at times - I found this spoof to be very, very funny...*

*WARNING: Some of you will take offense, so if you're easily offended, "don't go there"

Cousins sharing...

From: Del and Lee
To: Betty Thorsvig
Sent: Monday, February 23, 2004 9:17 AM

Yah my Mom is the same way. One time when I take her she is all happy & saying the home isn't too bad & she needs to be there & the next time she tries to convince me she needs to go home as that place is falling apart. The food gets lousier & lousier & is always cold etc. I have bought a pass a couple times & eaten with her & what I had was very good & very hot However I'm sure some meals are better than others Last week when we went to the beauty shop they had screwed up on her morning cereal as she loves the cream of wheat they serve her & has always been very good but whoever cooked it this time did a lousy job as it was all lumpy. So I'm sure it is off & on & there are foods she doesn't like. Meat loaf being one & they have that now & then, with fish as the alternative meal if you don't want meat loaf & she doesn't like fish either.

They have an alternative list on the wall but they don't bother to point it out to the people & with Mom's memory she doesn't remember she can order anything else & if she did remember it she can't see well enough to read it. I think it odd that they don't take into consideration that some people are there because of dementia etc. therefore can't remember things & go ask them each day do you want this today or do you prefer the other meal.

Mom is very weak in the knees & her hip is real bad again She can barely walk anymore. I don't know how much longer I can hold her up to take her out. I told them about it at the last care plan meeting & they are supposed to either put her back in physical therapy or in the restorative program to try strengthen her legs again. Part of it may be from the tranquilizer they give her too as she was so stressed out & causing so much trouble & cussing & swearing & threatening suicide etc. at first that they finally had to put her on a mild tranquilizer. It makes her very sleepy so that may be part of the problem.

Tomorrow she & I go to Las Cruces to a dermatologist to see if he can freeze some of her cancer spots off so as not to have them surgically removed. She will be 92 in July & I hesitate to keep having her put under for surgery all the time. She has had 3 cancer spots removed already surgically & now has another on her upper chest about the size of a quarter. Plus 2 or 3 more little ones that are about to start growing. I hope he can freeze them off so they don't develop.

Thanks for the pictures I sure enjoyed them. Aunt Harriet sure has aged. She looks as old as my Mom. Everyone thinks Mom looks so young & does so well for a 91 yr. old but to me she looks so old & is deteriorating fast. I see more failure everytime I see her. But I can remember the real vibrant, fun loving ,able to take care of any situation, independent, person I use to know so now she is so different it is almost like taking care of a total stranger.

Well have a good day sorry this is so long but guess I felt like talking today.

Love Del

----- Original Message -----
From: Betty Thorsvig
To: Del and Lee
Sent: Sunday, February 22, 2004 9:58 PM

Hi Del,

Things are doing ok. No acting out. She still has good and bad days. We were up for a visit last Wed. evening for a hour - Bill and I - and had a really nice visit. Today I her out for a ham Sunday dinner and she was weepy, talked very little, cried a lot, slept and they cranky.

You never know from time to time.

Betty

When I saw Mom last, on Saturday, we didn’t go out, but I was there for 2.5 hours visiting*. She was in very good spirits. Earlier in the day, not feeling well, but was about to go to supper when I left. No, not bad at all. I’m very encouraged by her demeanor all around. Her biggest concern is that she vacillates between fear and anger about being forgotten by us. She feels she is a burden, but at the same time doesn’t want to have to beg for our attention. Although I haven’t been through what she’s going through, it’s easy to imagine that it would be tough. At this vulnerable time in her life, it’s not surprising she needs more support than ever…

*During my visit, Mom compared caring for her mother with her own situation now. Although I lived through it with her, it was helpful when she reminded me how her and Aunt Pat decided to jointly care for Grandma once Grandma couldn't be on her own. Mom had Grandma spring to fall, and Aunt Pat from fall to spring. It was as fair as they could arrange it.

Towards the end of Grandma's life (1973 or so), she entered a nursing home. Mom said, "I have never forgotten or forgiven Pat for what she did." I blinked, a dim memory of hearing this before in the back of my brain. "Never forgotten or forgiven what, Mom?" "What she did to Grandma."

She went on to explain that Aunt Pat drove up to Hallock one day to have Dr. Larter look at Grandma, left her there, and went home. Dr. Larter called Mom and asked, "What are you going to do about your Mother?" She had to learn from Dr. Larter what had transpired to this point since she had not be called by Aunt Pat. "She was left sitting in her chair in the hallway of the hospital," Mom told me. After learning the circumstances, it was arranged for Grandma to enter the nursing home. Paperwork had to be taken care of by Mom later. As you might imagine, Mom was not amused at having this dumped in her lap, as she called it. She didn't resent her mother, nor helping her, but it was how it happened. As you also might imagine, loving her sister as she did and does, she hasn't stopped loving her. But, Mom is Irish, and she has a looong memory!

Cousin Delphine had these reactions to Mom's transfer this weekend...

Wow, Betty - what a beautiful place. I looked at that web site you listed. Gosh, I'd be perfectly happy there. Aunt Harriet is so lucky. I wish we had something like that here. If it wasn't so far away I would be very tempted to send Mom there. The nursing home here is OK but is a typical nursing home. They do a lot with the residents. Take them on scenic trips once or twice a week take them shopping etc. But Eventide looks more like a regular retirement community rather than a nursing home. I'm jealous as I'd sure love to see Mom in a place like that than where she is. They may have one better in Las Cruces but then that is 75 miles away & I don't relish driving to Las Cruces 2 or 3 times a week. Anyhow I feel you kids are really doing good by your Mom. So beautiful there according to the pictures.

I'm sure the pictures don't even do it justice. Hope all went well & easy today with the transfer of Harriet to Eventide. I even put it in my favorites so I can look at it once in a while.

Friends my parents knew in New Mexico have been keeping touch about Mom, even when Mom cannot keep in touch with them...

From : Betty Thorsvig
Sent : Friday, January 30, 2004 11:18 PM
To : Trish Lewis, Sharon
Subject : From Mom and Dad's friends in T or C
__________________________

I sent this to Don and Nita Donner - good friends of Mom and Dad's tonight and just wanted you both to see theirs and my reply. I also included Delores, Virginia (as her mother is at Eventide too); Florence (a church friend I email that Mom and Dad knew from T/C) and our previous Pastor's wife Billie Sue - as I know they would all want to know. Bets

----- Original Message -----
From: Betty Thorsvig
To: Donner
Sent: Friday, January 30, 2004 11:14 PM
Subject: Re: Harriet's phone number, please

Mom will not have a phone at Eventide. They have a community phone; which I will find more about soon.
She has only fond memories of you both and the love you showed them.
Thank you for your prayers - that is what we are only asking for.
I will keep you updated, I promise.
Sincerely,
Betty

----- Original Message -----
From: Donner
To: Betty Thorsvig
Sent: Friday, January 30, 2004 9:52 PM
Subject: Re: Harriet's phone number, please

Oh, Betty, this is sad and I am so sorry to hear this about your mom. We talk often of her and her wonderful sense of humor. Is there anything I can do. Please, Harriet has called us and when I ask her for her phone number, the last time she gave me an area code for NM. Please would you send me her phone number, so I can call her?

I have a sister who has Alzheimer's and she is only 65 now, when she was diagnosed with it she was only 52. Now at age 65 she is in a wheel chair and like your mom, no control over her bowels. I know the pain of seeing these things happen to your mom. I want you to know that we (the church and us personally) will be praying for her. I want you to know that we care (love) your mom very much. If there is anything we can do please let us know. God bless you and give you peace is our prayers.

Nita and Don Donner

----- Original Message -----
From: Betty Thorsvig
To: Delores; Don/Nita Donner; Florence Reddy; Billie Sue; Virginia
Sent: Friday, January 30, 2004 7:32 PM
Subject: Friends/Family of Harriet Short

Trish and I met with the Manor staff today and Grandma. She just laid there and had little response. She was told she will be admitted to Eventide tomorrow, Sat. at 10 am. Below is what Trish wrote just Thurs and the opening came after she wrote this. If you have further questions, let me know. Please share with any other family that might want to know.
I just wanted you all to know. Thank you, Betty

The light is going out in her eyes, literally.

During the past three weeks or so, there's been a noticeable decline in Mom. It actually began late last year when she began having more difficulty in getting around even with her cane. She was becoming less sure of herself, unsteady, nervous unless I was right there to help her every step of the way. Once, upon return from an afternoon at the hairdressers than grabbing a bite to eat with me, we had just gotten inside the Manor when down she fell. As it happened, it was like time slowed down and I tried to think how to stop it but I couldn't. She fell forward, her face hitting the floor at the corner, one bow of her glasses grinding into her face. After the aides helping her up, we saw a gash on her face, and her eyeglasses were bent badly.

The mother I've known all my life isn't there anymore. My Mom was full of life, opinions, and energy. She had a classic Irish temper, but also knew how to laugh and enjoy life. It makes me sad to already be talking about her in the past tense.

Now, despite a brief time where not only we, but Mom herself thought she was getting past the initial grieving period and coming out the other side, she is encountering another challenge. I'm not sure what it all entails, but it's there, and I don't think it's going away. It's like she's falling apart.

I took Mom to Dr. Haake last week. He's her neurologist. He confirmed that her dementia is progressing, along with a deterioration of her gait. Physical Therapists were brought in to the Manor where she lives to evaluate her. They called me saying her leg strength was actually quite good for her age, but that due to her lack of confidence, a walker was indicated. They will come by a few more times to help her learn how to use it, and observe and advise. After that, she's on her own.

Susan from the Manor called yesterday. Mom has once again been found wandering the halls in nothing but an undershirt, nothing on her bottom half, virtually naked. She's also walked that way into the hallway public restroom and had bouts of diarrhea all over the floor. After a brief interlude where Detrol helped her regain urinary continence, once again she's having accidents but even worse than before; not only when sleeping, but when she's awake. It's like, Susan comments, she's just given up and doesn't care.

The last few times Mom and I went out to eat, she began exhibiting more odd behavior. She was always unconventional in her behavior by some standards, but she usually reserved that for when she was at home. Now, she has begun to do some inappropriate things in public, i.e., taking her dentures out, setting them on the table in full view of anyone to see in restaurants, making loud comments about people near us, etc. I try to redirect her attention, or make a joke and we laugh, and that has worked so far. However, between these troubling examples, and some public incontinence, it's become clear that it will not be as easy – maybe even possible – for Mom to get out much longer. She will miss that very much…

So we are not to the point where we must begin actively seeking skilled care, because it's only a matter of time before the Manor cannot meet her needs. I called Eventide, and they transferred her from the inactive to active list for placement. It's difficult to estimate waiting times, they said, but it could vary from one month to one year.

In the meantime, we wait, we cope, and we grieve. We grieve for the Mother we knew, the Mother we know now, and her absence when it comes.

From Cousin Delphine (Alberta's daughter)...

...you were asking me about a [phone number] so your Mom could call mine at the nursing home. Well she apparently has it as I was talking to Daryl one day about you wanting the nos. of the nursing home so your Mom could call. Daryl said Harriet has called my Mom several times. At least 5 times on his shift & he works noon to 7 PM. And who knows how many times she may have called when he wasn't working. So they are talking it's just that neither one of them remember talking to each other. Christmas before last your Mom called My Mom & they talked for almost 2 hrs. & 3 days later Mom was wondering how Harriet was saying she hadn't heard from her since she went up North. I said Mom you talked to her for almost 2 hrs. just 3 days ago. No memory of it at all.

Then there was that almost $400 phone bill Mom had from your Mom calling collect all the time that you sent mom half the payment for when I wrote what she wanted me to write. And after all that Mom had no memory at all that she had even talked to Harriet. So I don't think we have to worry about them not being in contact with each other. They are it's just that neither one of them remember it. Love Del

No, they don't remember the details, but they do remember each other. As sisters, they've been there for each other all their lives...