Tuesday, December 09, 2003

"Ain't she the prettiest corpse you ever seen?" asks Arden Peters at his wife's funeral. Before she passed away, Maxine's last words to Arden were, "I love you."

Images (and words) of the Aging of America.

Also, take a look at the wonderful multi-media presentation (slideshow and audio commentary) presented on this same work, here...

Wednesday, December 03, 2003

The Forgetting is a documentary that will be broadcast on PBS on January 21, 2004 (9pm ET). It's a timely subject with adults living longer but not necessarily living better. We're at a crossroads where quality of life is intersecting with longevity. Science is racing to find solutions to battle diseases such as Alzheimer's, but in the meantime, people are left to cope with the results of our minds not keeping up with our bodies...
So many people are out there, caring for loved ones that can no longer care for themselves. They're called caregivers, a lovely term, but it is describing one of the hardest jobs there are. Nothing new, mind you, since people have been doing it for centuries, of course. I'm bringing it up, however, in the modern sense in our culture. Caregivers are one of those invisible groups that most of us either don't know about, think about, and sometimes even when we do, don't acknowledge. Especially when it comes to acknowledging this challenging and physically/financially/emotionally-draining job by offering support. Kind words are nice, but offering a caregiver a day off is better.

Below is a 'caregiving note' recently published in a newsletter I subscribe to, from a fellow caregiver asking for feedback by other subscribers on a situation facing her. Subscribers are asked to offer their ideas to the person writing in. Under her note is my response to her...
It isn't easy for anyone to be around my husband, including my brother and sisters . MY husband suffered a traumatic brain injury in March of 1999, while skiing. I have chosen to care for him at home.

My husband and I loved to travel before accident. We have sometime shares, so I called my brother and asked if he and his new wife might like to join us next summer at a date that would be convenient for them. My brother called me the next day apologizing he said he's sorry, but since My husband's accident, they aren't comfortable around him, and they wouldn't be able to relax. They would rather not make plans with them. My sister who is a CNA, has not been interested in a trip to "help" out even if I paid her way.

I don't receive any help from my family, but my 5 girls are all supportive to a certain extent. They say it would be embarrassing to help change Daddy. I could understand these feelings in the beginning, but after 4 1/2 years I wish there was an attitude adjustment. The general feeling is that there are skilled care facilities to take care of people like my husband. I know that he wouldn't do well or live long there.

Thanks for reading,

Betty
My answer...
Betty:

It is unfortunate that your daughters are not willing to try to overcome their discomfort to help you. I am a daughter who helped my father with personal care, and while it was strange at the beginning, I felt more compassion than anything because my Dad was probably very embarrassed. His situation was physical only, mentally he was fine, he knew what was going on. My point is, you need help. You needed it 4 1/2 years ago and you definitely need it now! If your daughters or relatives cannot or will not provide you necessary respite, then is respite care through your county, state or local private companies an option for you? If not, you may have to compromise and seriously consider skilled care. If you research available local skilled care facilities, talking and working with the staffs, I have a feeling you can find a good fit for your husband and yourself. Many such facilities not only allow but welcome family involvement. You can continue to participate in the care of your husband, but at the same time continue living life as your husband would surely want. It's NOT selfish to think this way, trust me, Betty. My own mother is now in a wonderful assisted living facility that is more like a cross between assisted living and skilled care. It's private, run by a family, and only has 30 residents. I've gotten to know them all, and while Mom was nervous about it, she has come to greatly appreciate the facility and its staff. I hope this helps you...

Monday, December 01, 2003

I'm reading an amazing book right now titled, "Dancing with Mister D". Based on real-life experience as a physician working in a nursing home, the author writes about what it's like facing death with those at the end of their lives.
Since we are all mortal, we're all of us doomed to be destroyed. This destruction is often preceded by years of torture in all kinds of institutes for the aging, where Time, like the cruel child with the fly, slowly pulls off our wings and legs...
The author, Bert Keizer, works in the Netherlands where euthanasia is legal for those that request it. He discusses, in first person narrative, many such situations in the book. It's illuminating to learn the reasons individuals ask for this, how families react, etc. The subject matter is dealth with with compassion, intelligence, and yes, with humor. It's not a 'feel good' book, but it still leaves me feeling very good about life in a profound way...

Tuesday, November 18, 2003

The Greenhouse Project is a movement of people who envision a more positive environment for not only caring for but nuturing our elders. I think it's exciting! I intend to follow this idea and those like it. For now, it is limited where this kind of thinking is actually practiced, and will probably be too late for our Mom. While we do what we can now, I think about MY senior years and what I would like...

Wednesday, November 05, 2003

A message from our mother, to her daughters (Sharon, Betty, and Patricia)...
I love you still even though you sometimes treat me like dirt. Dad & I went through hell to bring you back from California and away from Tom the devil's cohort. It really tore your Dad apart to see you in the condition you were living in. Estelle gives me a pain in the ass. She should have stayed at home and raised her kids properly. She thinks she is so smart. She sits and puffs away on her cigarette and thinks everything will be okay if she dishes the money out to those no good boys of her's. I've got news for her. She is just helping them to get into Lucifer's hands deeper and deeper.

I thank God we got you away from there but don't know for sure if you are glad we did or not.

I pray that Daniel tries to walk the right path. Eva is sort of off the right path but pray she turns back before it's too late!

I'm sure glad my mother is not alive to see all this as it would break her heart. I'm so thankful that I did all the right things for her even though she and I always had our arguments. We loved each other immensely! She was not just my mother, she was the best friend I ever had on earth! When I needed to talk to someone she was always ready to listen and to encourage me to go on!!

She did not have it easy as a child. Her father was a drunkard! I don't know where he would end up after death. He did long before I was born so never knew him. My other grandpa, Grandpa Fitzpatrick, was wonderful and loved all the grandchildren. He always had a pocketful of pink peppermints. I was 4 1/2 when he died so can't really remember him too well.

I remember his big white beard. I do believe I'll see him and my grandma in heaven! What a wonderful reunion that will be!!!

When the Lord calls me I hope I don't struggle to live as I want to drift into the arms of Jesus nice and easy. Betty, I'd love to talk with you someday. Trish, too, if she wants to listen to me.

I was so delighted to have three little girls, and it was so fun to sew all of your clothes. I sure spent hours at that machine. Dad was so pleased that he would sneak up behind me, give me a peck on the cheek. He loved me so tenderly! Sure we had our arguments but they never came to blows.

Grandpa Short was so cruel to Grandma Short. I don't know why she stayed with him as she was a teacher. But of course the wages were so low I supposed she couldn't make it. So she just stayed and kept having kids. Can you imagine - he blamed HER for that, too, as if he didn't have any part in it, the miserable bastard!

I wouldn't take anything from him. He said, 'You think you're so smart.' I said, 'You're damned right, and a lot smarter than you.' I bet your Dad could have told you things that would make your blood curdle of how his Dad treated your Grandma Short.

There are lots of men around today that take part, but women can get a lot better help if they aren't afraid to ask.

Some days I wish I'd never been born. Happiness is an illusive visitor to me. I've struggled with that all my life. The happiest time was with you three girls and your Dad!!! Your Dad was a prince!!!

No man has a right to treat a wife like a child! A wife is a grown intelligent adult and should be treated as such.

My hand is getting tried so better quit and finish this later...
I found these notes while tidying up her room recently...

Monday, November 03, 2003

My sister Betty asked the director of our Mother's assisted living facility how she sees our Mother now, and over the next few months...
Your mom is really pretty much the same as before. She has really good moments and days and then not so good ones. She has made friends with Kay and really enjoys being with her at coffee and card time. Kay can typically get her up and moving quite a bit. There really is no predicting what are the good days. I do think that she is eating a lot of junk food and is then not very hungry for the main meal. I don't believe that she has had any major weight loss or gain, I will double check this. Over the next year I can't honestly say. Is she doing worse than before- not really-she's still up and down, good and bad etc. Is she doing any better. No, pretty much the same. We will just have to continue to try and motivate her as much as possible and keep her safe. We will also monitor the memory loss and see if that is affecting her in any major way. Is she safe right now, I believe so. But the other possibility is that at some point she may decline, have a fall, or begin to wander. These are the things that we watch for. Sometimes they are predictable and sometimes they are not. I am sorry that I can't give you more of a definitive answer. For now I say just continue to love her up the way you all do and enjoy the good moments. Thanks Susan

Friday, October 03, 2003

I recently contacted Denise from Caregivers.com requesting that this blog be added to her links section. Denise responded by asking my sisters and I to participate in an interview of sorts via email about our blog. I gladly accepted and below are my set of answers...
1. How did your blog start? Had any of you had previous experience with a blog? Is there one person who is the IT department, so to speak, of your blog?

My Dad passed away on August 8, 2001. It was because of the stressful months leading up to his death, and those after, that led me to writing down my thoughts. I define myself as a Writer. I can't remember a time when the written word, either as literature I read, or writing I did as some form of expression, wasn't a big part of my life. [The very subject I'm writing about - my mother - was a huge influence on my awakening, exposing me to stories back as far as I can remember. My father made up bedtime stories and took me out of myself. He played roleplaying games with me where he was Hawkeye and I was Chingascook in the woods by our home...] It was very natural to extend what I already do with other parts of my life and express my feelings and thoughts about this part of my life. That sounds strange to me, because I think of it as sharing more about my MOTHER'S life, not mine, but of course, it's all intertwined.
Yes, I have other blogs, several others (The Journey and Writer's Block are examples...)

I am the IT department; I do IT as a living and set up all the writers as part of my blog team, etc.

2. Did you worry about sharing personal information in such a public format? The honesty of your blog is just wonderful, but did you worry about any repercussions from your families?

No. I'm an open book to anyone. I see nothing to be ashamed of, of being human. Sharing is healthy for me, for my family, and for others that read it. No, I have not worried about repercussions from family. But then, our family is very open and honest and I can't imagine anyone being bothered (there are other family members that read it but don't write for it...)

3. How has writing the blog affected you? And, affected your relationships with your mothers?

Writing for the blog helps me to see events in a broader perspective. It allows me to vent when there are emotional periods, and then come back to them and see them in a more realistic light. Sometimes that does NOT happen. Sometimes things are just tough, and there is no getting around that. In the end, I think I can speak here not only for myself but for my sisters and our cousin, we all realize things are just as they are and we get on with life. I personally think that's the Irish in us. We're all very strong, independent, intelligent, IRISH women.

4. Have you been surprised by any events or incidents that have occurred because of your blog? Any unexpected surprises--good or bad?

I can't say I've been surprised by any of it. When I started it, I started it for myself because I needed to. Then I started thinking, my sisters may benefit from this also, and the dynamics of multiple voices vs. a single voice got me excited. I invited them first, then later my cousin after my Mom's sister began having similar problems. It's been as good as I hoped - i.e., I hoped it would provide a place to unburden, a place to enlighten, a place to share with each other and with perfect strangers, and to be positive in our lives generally. It has been all that. My sisters and I, and especially our cousin, are talking more than ever. We now have weekly 'family chats' on my Family website I created .

5. Have you committed to a writing schedule in your blog? Do you write as often as you need? Or at certain times during a day or week?

No writing schedule. We all write when the spirit moves us.

6. What suggestions can you offer to other family caregivers considering creating their own blog? Any pointers you can share so they get off to a good start?

Have a central point of contact/IT person like we did. It makes administering the blog much easier!

Use one of the blogging services at least at the beginning. They offer editing utilities and page templates that make setting up and using your blog MUCH easier than starting your own from scratch. Of course, if you have a VERY handy IT person around, go for it!

Anyone contemplating doing a caregiving blog should probably think about what they want out of it before they jump into the creative side of it - e.g., I wanted a blog that was both memoir and journal; I designed my page to show who my mother WAS, and who she IS, as well as showing how I felt about her. I included the trigger that caused the page, my father's death, and how it had devastated my mother. You can keep it simple, or you can be more expressive as we were. It's all up to you...

And, can you include a brief bio of yourself (age, marital status, children, careers)?

Age: 44
Marital Status: Divorced, currently in a Long-Term relationship
Children: Two - Daughter Eva 24 and Son Daniel 21. To find out more about Eva, see her blog - she is literally leaving tonight with my 3 grandsons for Iraq...
Career: I am Systems Administrator for the Office of Hearings & Appeals, Social Security Administration in Fargo, ND

For more about me, see my personal website

Wednesday, October 01, 2003

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.

Monday, September 22, 2003

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...

Monday, September 15, 2003

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...

Saturday, August 30, 2003

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

Wednesday, August 27, 2003

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...!!

Tuesday, August 26, 2003

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?!

Wednesday, August 06, 2003

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...!


Monday, July 28, 2003

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

Monday, July 21, 2003

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...

Thursday, June 26, 2003

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…

Tuesday, May 13, 2003

Today, I attended a Mother's Day program at Mom's assisted living facility, and read her tributes written by myself and my sisters. When I arrived at the Manor, Mom was napping in bed yet. I was able to wake her up, but she was so fatigued she wasn't able to attend the program. Instead, I sat by her bed and read her each of our tributes. She looked at me intently as I read, and listened closely. She didn't say a lot, but I could tell it meant a lot to her hearing the words. As I was finishing reading to her, an aide came by to invite Mom down to the dining room to have strawberry shortcake. She slowly got up, dressed in a houserobe with my help, and we walked down to the dining area. Chris was with me. He had patiently waited by the front door while I read to Mom, and joined us as we headed down the hallway. I sat with them both as they ate their shortcakes; I just drank a 'rasberry tea' (both Mom and I decided if there was tea in it, it was a very old and weak bag!) Mom kept saying, "I really hate Cool Whip!" as she contemptuously removed it from the angel food cake and strawberries. I laughed and agreed. She even had seconds. I teased her saying, "Well, at least you got some fruit inside of you today!"

As I left, she was sitting in her rocker chair. We hugged and kissed, and she sounded so sad. "All I do when I get up is sit by myself and look at photos...it's very lonely..." I never know what to say. She is weak, tired, sad, and alone. She will not be young again, not be held by Dad again; her dreams for the future have come and gone, and now she wants to leave this world. Every moment we have together is a gift. But then, it is for all of us...
____________________________________

Mother's Day Remembrance 2003

I am the middle of three girls my mother had.

What can I say now to tell you about my life with her and what she gave me?

There is too much to say in this brief moment in time but these are the things that come to my mind.......

My mother was what every child dreams for - I was always well fed, warm and loved. She cared for all my needs and gave me the wonderful "gift" of childhood that not every child gets.

I had all the pretty Easter dresses, hats, and gloves. The Halloween customs and many Christmas presents that we sometimes found out about before hand - but never told Mom and Dad.

My mother taught me how to clean a house by giving me chores to do every day and more on the weekends. We all had to help. But, without us knowing it, she was teaching us and training us to be responsible, caring and respectful adults.

My mother taught me how to be a good cook and to bake. I learned to make homemade cocoa fudge from a very young age and now passing it onto my own children.

I learned all the practical things too like; sewing, canning, berry picking, making mud pies, caring for animals, going to the dentist, attending Sunday School and church, attending country Vacation Bible School and summer Bible camps.

She paid for piano lessons and instilled the love for a WIDE variety of music, and not just one kind. Which I have also passed onto my children. She attended all my boring music concerts and plays at school - not because they were so good - but to show me that I was important and loved.

Don't cry Mom, but if you do let them be tears of joy and great satisfaction. You did a great job - one I hope someday my children will say of me.

I love you Mom, always and forever - no matter what.
Betty Jeanne
___________________________


Happy Mother’s Day!! I wish I could be there to see your smiling face.

But let me reminisce. As a mother in the baby boom years after World War II, you gave so much of yourself to me and my sisters---your time, talents, wisdom and instruction, solid Midwestern values, and a rich
Irish/English heritage, for which I am eternally grateful.

I can remember playing endless games of Monopoly with you, chomping on fresh peas, potatoes, carrots from the garden, playing the game “anti-anti-I-over” with you over the garage, and sneaking some of those sweet
strawberries and raspberries while picking them with a straw hat on my head and a tin can with a handle in my hand.

There were lots of warm, lazy summer afternoons to bike, read, play house in my own playhouse, catch butterflies and insects for my biology class, play hopscotch with Betty or with my friends etc.—just to be
creative and have fun. What a great place to grow up! You gave me the gift of a marvelous childhood where I could truly be a child free from the too early encroachment of adulthood.

You taught me all the essentials and then some for being a good wife and mother. I am so thankful that you taught me how to cook, bake, clean, organize and be disciplined from an early age. More than that, you
communicated and demonstrated by example how important it was to be honest, hard working and a person of integrity.

Thank you for believing in me and my abilities when I decided that I wanted to be the first from our family to go to college. Thank you for being willing to let me go to the big city, Chicago, so far away, when it meant that your first born would no longer be close to home. I know that this was hard for you. But your love was great enough to launch me on my big adventure.

I love you very much, Mom, and always shall.

Sharon
___________________________

When I look back at my childhood, the overpowering memory is one of security. I never had to worry about a roof over my head, food in my mouth, or clothes on my back. I never lacked for hugging or snuggling or kisses. I remember marvelous conversations about a wide variety of topics…and this was just at the dinner table.

Responsibility was so integrated to the way I was brought up, that it was organic in my perception as how life just…was. Time and experience has taught me otherwise. I’ve found out that many people never have that luxury of security.

My parents were the foundation of that security. Both of them were very special people in my life, and I knew it to the degree I could know it, even when I was a growing up.

Mom was always there. She made fantastic meals! She created and sewed really cool clothes! She supported my dreams and was there when I really needed her. I fought with her like cats and dogs over things I can’t even remember about. I sometimes think we fought simply because we rubbed each other the wrong way, not really knowing why. Through it all, I always loved her, and I know she loved me. There was never a question about that.

Mom, you are still here for me. I treasure these times we have had in the last couple of years, despite the sad reason of Dad’s passing being the reason that made it possible.

We can never tell those we care for enough, “I love you…” I love you, Mom.

Trish

Monday, May 12, 2003

"Where in our brains do our memories lay down? What is it about our memories that enable us to function as capable, sentient beings?"
A daughter reflects on her mother's loss of memory...

Monday, April 14, 2003

'Full recovery...takes two to three years rather than a year. In the older age group, it appears that a few never fully recover their former state of health and well being. As one woman, in her mid-sixties put it five years after her husband's death, "Mourning never ends: only as time goes on, it erupts less frequently." '
The excerpt above is from an article entitled How Long Does Active Grieving Last?. It reminded me of Mom, and how the absence of Dad by her side is still very painful for her, still popping up at every train whistle, despite it being over a year and a half now. Considering their closeness and the length of their relationship, it's small wonder she's still actively grieving.

Wednesday, March 26, 2003


Last Saturday Mom was like her old self...well, at least like herself 10 years ago or so...

She had a spring in her step, she was a bit crabby (always a good sign!), and didn't bring up Dad once...She talked about the weather, about life at the Manor, we laughed at Garrison Keillor on the radio, and just about died laughing when she informed me halfway to her hair appointment we'd need to make a pit stop for her to go to the bathroom or there'd be an accident. 20 minutes later (!), we left the gas station and still got there early. Good thing I pad extra time in for these outings!

This weekend is her 81st birthday. Betty and I will be taking her out for dinner on Saturday, and Betty will have her out for to her place for cake on Sunday.

We bought her a heated mattress pad for a gift, which I know she'll really appreciate.

Mom commented to me today, "I'll almost be as old as Dad was when he died..."

Wednesday, February 12, 2003


Betty:

Good article [regarding a job upgrade]- might take a long time; but I think in the long run you will succeed.
I always remember how you said to have endurance when it came to Bill's social security.
How did Mom's perm turn out? Anything new with Mom?
_________________________________

Trish:

Mom's permanent turned out great. We grabbed a bite to eat afterwards.

I won't be going over there this Saturday since it's so soon after this appointment, so her next hair appointment won't be until February 22nd.

The only thing new, which you probably heard about from Mom yourself maybe, is that she's still getting used to her dentures, saying it feels so full all the time like she has a mouthful of food in there. I'm no judge of dentures so it could be just that she needs to get used to them, or, it might be that they are not the best-fitted either. I'm sure there is a definite science to getting them right. They do their best on the casts they make, etc. but it's tricky. Also, you get what you pay for. It's entirely possible that if you forked out a lot more cash you could get a much better-fitting denture. If money was no object, you could get all implants - just like your own teeth, but just fake. VERY expensive from what I've heard...

She 'lost' her dentures and I found them in her cleaning cup! I think what happened after I listened to her is that someone else said they could not find them for her and she assumed they looked there. Anyways, I find that you cannot assume anything when things are 'lost' there. That's the first place I looked and there they were! :)

She has mentioned Dad once, but otherwise has been fairly cheerful. Very quiet though. Unless you engage her she doesn't talk much, seeming to be more and more into her own little world. I think if we want to have Mom with us mentally as long as possible, we all need to call her/visit her and then talk with her about as many meaningful things as possible, otherwise we'll 'lose' her before she's even gone...

Sunday, February 09, 2003


I imagine being older, as Mom is, as being like in a mental fog. Your body is there, but it seems heavy. Your limbs don't want to respond like they once did. Your eyes are not as sharp, you have to concentrate just to hear or see where once it was done without a thought. Your taste isn't what it used to be, and the joy out of eating a good meal is dramatically lessened. Many you have known are gone.

I can easily imagine a time when leaving this world despite it being the great unknown would despite that, seem preferable...

Tuesday, January 14, 2003


Betty and Trish:

Well, mom survived the extractions and new plate but her mouth is very sore. She had soup and ice cream for supper and sucked on hard candy during the evening. She and I watched the Stargate marathon on the SciFi channel to keep her mind off her mouth. She had to sleep sitting up in grandpa's rocking chair in the bedroom. She did slip into bed during for a few hours before getting up to go to 7:45 am appointment with Dr. Chang. She needed to sit upright because of the residual bleeding and swelling. She has to keep the plate in her mouth as much as possible to see where sore spots develop so Barb can make adjustments in the plate. Overall, mom was a trooper. She made jokes and laughed at herself for how she probably looked with a swollen mouth and lip. I stayed close to her all evening and combed her hair alot. She also took Tylenol to relieve the pain. I told her we would celebrate at the end of the week by going out to eat Friday night and to a movie on Saturday. Keep her in your prayers.
__________________________

Sharon:

When hearing about the experiences Mom and you are going through due to her dental situation, I am SO glad that one of us could be with her through this. You made me sniff a bit when you said you hung out with Mom watching SciFi, combed her hair, etc. *smile*

T.

Monday, January 06, 2003


Betty and Trish:

I had one of the nicest weekends with mom since she has been here. She is more like her old self; yes, a little rampaging but not bad. She actually took an interest in the old phonograph and began trying to play the cylinder disks. She was in her element at the party Saturday night and really enjoyed the jokes and laughter of the guests. She got to tell some interesting facts about herself, her crafts and her life. It really stimulated her.

She got up Sunday morning and had breakfast. Because of her fluid retention problem, she stayed home from church but she had made herself a ham sandwich and a cup of tea by the time we got back from church. Then we eat and drove north to see the kids. When we returned, she had made herself supper. While we were gone, she had watched TV, read and taken a nap. She stayed up til 11pm and then took an ambien and promptly went to sleep.

One interesting observation about the last couple of days: When in this mood, she doesn't get weepy and cry as much about Dad. Yes, she misses him but she seems to handle it with more grace and maturity. I guess we can only pray that this pattern takes hold but only time will tell. We watched the SciFi channel together as well as
the Practice and the Star Trek, The Next Generation marathon. She wants to make some chocolate fudge this week so I'll accommodate. I plan to take her shopping at Catherine Pluses this weekend as they are having 70% off sales and also take her to see The Two Towers. Bill and I want to see Gangs of New York.

Sharon

Friday, January 03, 2003


Sharon:

Yes, Mom has had accidents likes this before. We were on the way home from eating out, and bad cramps came upon her, I had to stop asap to let her use a bathroom. When she came out she smelled horrible, and when I asked she started crying and said she had had an accident. She said there was a mess in the bathroom. I went in and it was ALL over the floor in the bathroom and the toilet seat and in the toilet bowl with tons of toilet paper all over. I could have told the management, but I didn't. I left it - it was horrible! I had Mom sit on a paper on the way home to protect my car seat. I immediately arranged a shower for her at the Manor and personally helped her undress and showered her myself. The whole time she was crying from shame. I felt SO bad for her...It would so hard for any of us to go through!

T.
_______________________

Betty and Trish:

Mom had an accident on the way to the bathroom just before I got home last night. She left some of her bowel movement on her bedsheets, hallway carpet and some on bathroom floor before she made it to toilet. Bill cleaned up some of it and I did the rest when I got home. She did not have any underpants and pads on. She had been wearing them but when she got in her rampage mode, she was determined not to wear them. I have now convinced her she must wear her underpants with a heavy Assurance pad to bed so she has some protection when she gets a belly ache. I also have bought her Assurance panties that look like a grown up version of diaper panties with elasticized leg holes and waist that she can wear at home or when she is out in public. Has she had accidents like this at the manor? I don't know for sure if she is loosing control or if the accident was because of diarrhea. Needless to say, if she is loosing bladder and rectal control, she may not be able to travel in the future and her future at Moorhead Manor will be shortened.

Sharon