The Journey

Love you Forever

2006-11-15T21:32:00.000-06:00

Happy Birthday momma. I miss you more than you can ever imagine.

I'll love you forever,
I'll like you for always,
As long as I'm living
my Mommy you'll be.

Love you Forever
Written by Robert Munsch

Goodbye Momma

2006-10-14T22:43:00.000-05:00

November 15, 1928 - October 14, 2006

Saturday

2006-10-14T08:51:00.000-05:00

The nurse just came in and said that she had taken off the rails of the bed and lowered it so we could sit next to mom and say goodbye, that she didn't think mom would make it through the day. Her apnea is about 45 seconds between breathes and her heart beat is escalating.

Friday Update

2006-10-13T18:33:00.000-05:00

Sorry, but I just didn't have a lot of time to post this morning.

We went out and got the ball rolling on the funeral, then took a break over at Borders. Then home for a nap.

Mom's temperature was 102.4 this morning and her apnea is worse. She breathes normally a couple of times and then exhales - I could count to 21 before she took the next breath. Her doctor came to see her yesterday - the first time we'd seen a doctor since this began. She said that since mom could be roused, that it could be another 2 weeks. After Bebo and I picked our jaws off the floor she said "but she could die of a heart attack tonight". It's not that we were disappointed that it wouldn't be sooner, just that Bebo can't take that much off of work and I had planned three weeks at max, but that was supposed to include a week between the funeral and going back to work. So we decided to wait and talk to the hospice nurse - they're the ones that are "in the trenches" so to speak. And besides, we remembered that you could rouse dad on the day that he died. When the nurse arrived this morning, we pounced. We told her what the doctor said and she just rolled her eyes - she said she would not be surprised if mom went this weekend and that keeping to the original time-line of a week to 10 days was more realistic (today is the 6th day). She said that mom's body wouldn't hold out another 2 weeks.

Good news though - at least through the weekend mom has continual hospice care - that means that we have nurses 24 hours a day (hence my time for a nap). I won't have to get up at 2:00 a.m. to give her medicine, or turn her, etc. - at least until Monday. They will re-evaluate the situation then. They provide this care in times of crisis (the nurse deemed us exhausted) and for the last five days of the patients life. So if it continues after the weekend it will be because the hospice people believe that this is the end.So just continue to pray for a quick resolution - when people say they hope they don't sound cruel for saying that, we tell them "it's not like she's getting better - it's going to happen regardless so let it be swift."

Thursday Update

2006-10-12T09:25:00.000-05:00

Mom took a turn yesterday. Her heartbeat is now irregular and she has a fever. The fever is not from fighting an infection, but rather a part of the dying process. She had to have a little oxygen and they have now brought in a suction machine. She can no longer cough up any mucus that builds up in her throat. From what I understand this can indicate hours or days until the end.

I understand the need to wait on some things, but there are others that I either want to get done or need to do. I'd like to write the obituary while I'm still thinking clearly, not when I'm grieving. There's bills to pay, bank accounts to balance, ebill options to change, etc. The things that can't wait while this is going on. We need to go to the funeral parlor and set things up (once again while we're thinking clearly). This necessitates finding her life insurance policy. We also want to cash in her IRA while the stock market is still high. Other things, like what will I do about money next month and a job, are being put on the back burner while this is going on.

Tuesday Update

2006-10-10T09:09:00.000-05:00

Well, since the SIL said in her comment yesterday (on my other blog) most of what I wanted to post today, I'm just going to copy/paste the comment here:

First & foremost THANK YOU to all for hugs, prayers & your wonderful support. It is much appreciated.Now for Mom: The "cocktail" seems to only be working minimally right now. We keep trying various combinations, but nothing seems to give her relief from the pain in her legs/hips and from the hallucinations for more than 4hrs at a time. She's gurgling periodically & it's awful to hear & know that this is really the signal that the end is so near. Today she responded to us when we were working with her; Friday [Bailey's note - actually, it was Saturday] she recognized her sister. But the brief periods of lucidity only make the reality of this more devastating.I've been helping Eve w/ Mary for the past 6yrs. I love her like another mother & I can tell you that our hearts are simply broken. Yes, I will be staying with them at night now. Family members are coming & going, but not staying. Their presence only disturbs Mary at this point. Hospice is providing meds, equipment & support as well.KEEP PRAYING that Mary is released from this particular hell quickly. She deserves the blessed peace of passing.Personally I would urge all to support your local Alzheimer's Assoc, Hospice or VNA. They are angels in disguise.

Okay, my turn. They put mother on a Fentanyl patch Monday. It is for pain and takes approximately 48 hours to kick in, so in the meantime we are giving her a pain medication every 6 hours (Lortab Elixir). This doesn't always work as she has frequent "breakthrough" pains. I wondered exactly what it was we said to the evaluating nurse on Saturday to cause her to immediately pick up the admission papers and fill them out until the Social Worker handed me a 2 page information sheet last night entitled "The Final Stages of Life - Signs and Symptoms of Approaching Death". The first thing listed was:

Eating and drinking: There is a gradually decreasing need for food and fluids. The body naturally begins to conserve energy and requires less nourishment. At this stage, there is increased risk of choking secondary to confusion and/or the inability to swallow properly. Difficulty swallowing occurs first with solid foods. This progresses to difficulty swallowing fluids. Your loved one will say that he or she doesn't have an appetite and isn't hungry. This is the body's natural response to the dying process. It is telling you that eating and drinking are no longer helpful and that the body can no longer use food and fluid properly.

So I guess when we told her that mom was choking on liquids and refusing food, she knew immediately that the end is near. Mother had difficulty swallowing her pain medication last night - choking and gagging on the liquid. I don't know what they will do when she can no longer swallow it - injections maybe?There is so much I have to do during this time - make funeral arrangements, find insurance policies, change billing options on our utilities, get ready to close bank accounts, etc. My head is full and makes it difficult to concentrate on any one thing.

The Sounds of Silence

2006-10-09T07:15:00.000-05:00

It’s finally quiet around here. We had to use a combination of three drugs (Lorazepam, Seroquel and Haloperidol for those interested) to get mom to quit screaming and ranting (Hallucinations), rest, and to get her combativeness under control. Saturday night she hit me while I tried to change her diaper. I am sure you would agree that she would much rather be drugged than to be abusing me. Its so quiet now that it's spooky.

A couple of weeks ago mom began choking on her food – she was losing that part of her brain that told her how to swallow. Last week she began to refuse food and water and we had to force her through coercion, bribery and down-right threats to get her to eat even a little bit. We could have had feeding tubes put in, but that would mean that she would either have to be tied down 24 hours a day or put in a comatose stage in order to keep her from pulling the tubes out. That is no kind of life. If there were a chance that she would get better, that would be different. But this is Alzheimer’s and there is no better. It was decided that there would be no feeding tubes and we would let nature (and God) take its course.

The worse part of this has been the hallucinations – the week-long screaming and ranting rage that lasted almost 24 hours a day (this was before hospice) – my mother lying in bed screaming like an animal and yelling obscenities at people who weren’t there. Also no way to live. The prognosis is a week to 10 days – it really depends upon her physical health (good) and her body fat – so it could be 2 weeks. I will try to keep you updated as things progress.

2006-10-07T20:59:00.000-05:00

Mom is going into hospice. She is refusing food and water. At this rate, they believe it will be only a week or two and she will be gone. She is continuing to scream and rant at nothing - she is being tortured by demons only her Alzheimer's brain can see. She needs to be at peace - that is what I pray for.

Screaming

2006-10-04T20:40:00.000-05:00

Screaming and screaming, ranting at no one, hour after hour. That's all I hear. The 25 mg of Serezone obviously isn't working, so the doctor upped it to 50 mg tonight. She's still going strong. When I go check on her to ask her why she's screaming, she says she isn't - that woman is. Well, "that woman" can just shut up as far as I'm concerned.

She's starting to have trouble swallowing and she has tremors in her right hand - palsy. She's also developed a bed sore - she resists laying on her side, but we're working on it.

Turning her is causing the arthritis to flare up in my hands. My fingers are often stiff and sore, making typing painful. I've practically stopped blogging, sorry about that. I miss the interaction, but everything is just overwhelming right now. I'm in that black hole that Deb mentioned on her blog the other day. I tried blogging that day, started at the bottom of my list, but only made it to the "S's" before I had to stop.

On Friday, a doctor is coming to the house to evaluate mom for a local Eldercare HouseCall service that one of the hospital runs. If she qualifies (and the physical therapist and the RN thinks she will) then she will no longer have to go to the doctor, they'll come here. Of course, this means switching doctors, but as I've said before, that's no problem for me.

That's all for now, I'll try to update as things go on.

Update

2006-09-15T23:02:00.000-05:00

This is from my other blog, and I know that there is stuff here that I've already posted, but there are also updates from this week. I'm just too tired to go through and edit.

Some of you have asked how mother is doing, so I thought I would take this step away from all of the frivolity and do a little sober reality check. Mom took a sudden turn for the worse on Friday, September 8, when she suddenly decided to no longer stand up. She would lay in bed and weep and moan, screaming about people being in her room, etc. Erupting into hysterics whenever we tried to sit her up, we perceived what looked like panic attacks. This continued throughout the weekend, with me ending up in exhausted hysteria by Sunday night. We knew at that time that things could not continue status quo. It was decided that my sister – the human barracuda – should talk to the doctor. This woman does not take no for an answer. By Tuesday we had an antidepressant/anxiety medication called Serzone. This has seemed to calm her down a bit – she is no longer lying in bed screaming. She still will not stand. Wednesday we had a visit from the Home Health Nurse who immediately set us up with an aide, social worker and physical therapist. This is on a limited basis since Medicare doesn’t pay for long term care. The aide will help teach me how to take care of a bedfast (the proper term for this) person, like how to change sheets with a person in the bed – no easy task. The social worker is making recommendations to two organizations for relief – The Alzheimer’s association and some government agency whose exact title I can’t remember right now. The best was the physical therapist – although she said that mother may never leave that bed until she dies or goes into a nursing home – she is getting us a wheelchair and is recommending us to an organization which brings a doctor into the home so that we don’t have to struggle to get mother to her doctor. It means changing doctors, but it will be worth it. I am physically and mentally exhausted right now. I haven’t had a nap since Tuesday, a decent one since Monday. I’m running on adrenaline. I’m also in a bit of pain, all of the lifting and turning (we’re looking into a hydraulic lift) of mom, plus the cranking of the bed (only the head and foot parts are electric – to raise the bed you have to crank) is wearing on my shoulder – but raising the bed saves on my having to bend clear over to tend to mom. Soooo, that’s the 411 on the situation here. I’m hoping that things are going to start getting better – it’s too soon to tell how well the Serzone will work, so we’re keeping our fingers crossed on that one. I’m sorry that I haven’t been a regular blogger – I try to hit everyone at least once a week, but it’s hard some days to do any at all. Thank you for bearing with me – cyber hugs to each and every one of you who has supported me. I appreciate it more than you can ever know.

There was something interesting (and I mean that in a funny way) about the social worker - I said that mother was in stage 6 Alzheimer's and she said that there were only three stages. I replied that there were 6. She then told me that she had recently been at an Alzheimer's seminar where the speak was "that author who wrote the 36 Hour Day" and they said there were only 3. I countered her again. "Well, where did you get your information?" I looked her in the eye and said "The Alzheimer's Association's webpage." She just looked at me. I didn't know whether to laugh or cry.

Help?

2006-09-11T19:33:00.000-05:00

Serzone (nefazadone): Serzone is a newer antidepressant which appears to be well tolerated in the elderly. It is similar to trazodone which is more effective as a hypnotic agent in the elderly than as an antidepressant. Serzone is effective as an antidepressant and actually has immediate anti-anxiety effects so it is also beneficial in relieving anxiety associated with depression.
Dosing is usually twice daily. In general, older adults require less frequent dosing compared to younger adults. Side effects may include; blurred vision, clumsiness or unsteady gait, low blood pressure (with or without dizziness), diarrhea, stomach pain, hypertension, angina, tinnitus, abnormal dreams, drowsiness, headache, among others

Hmmmm, mother starts this tomorrow. We'll see. The doctor is also going to get up a visit from the home nurse thingy to come here and evaluate what we need. My sister is good for one thing - she's a barracuda, so I sicked her on the doctor. Unfortunately, she's in a nursing home and can't go with me to appointments (or help with mother). After a weekend of crying fits (mine), my sister finally decided that I'd had enough. (Previously remarks were along the line of - well she took the job and this is part of it - and we wonder why I don't talk to her a lot.) My sister-in-law, Bebo, will be going with me to mom's next appointment in December - since I'm not sure I can get her there by myself. Mom is now refusing to get out of bed and has screaming fits. (of course, she says she could get some rest if "that" woman would quit screaming)

Mom funny: To me - "You sound like you don't look too well." I'll try to sound better from now on.

My back is killing me from moving her around that bed and constantly bending. Yes, we have the sheet trick going, but it's still a lot of tugging and pulling.

The Pickle Jar

2006-09-10T23:45:00.000-05:00

My cousin sent me this in an email.

The pickle jar as far back as I can remember sat on the floor beside the dresser in my parents' bedroom. When he got ready for bed, Dad would empty his pockets and toss his coins into the jar. As a small boy I was always fascinated at the sounds the coins made as they were dropped into the jar. They landed with a merry jingle when the jar was almost empty. Then the tones gradually muted to a dull thud as the jar was filled. I used to squat on the floor in front of the jar and admire the copper and silver circles that glinted like a pirate's treasure when the sun poured through the bedroom window. When the jar was filled, Dad would sit at the kitchen table and roll the coins before taking them to the bank. Taking the coins to the bank was always a big production. Stacked neatly in a small cardboard box, the coins were placed between Dad and me on the seat of his old truck. Each and every time, as we drove to the bank, Dad would look at me hopefully. "Those coins are going to keep you out of the textile mill, son. You're going to do better than me. This old mill town's not going to hold you back." Also, each and every time, as he slid the box of rolled coins across the counter at the bank toward the cashier, he would grin proudly "These are for my son's college fund. He'll never work at the mill all his life like me." We would always celebrate each deposit by stopping for an ice cream cone. I always got chocolate. Dad always got vanilla. When the clerk at the ice cream parlor handed Dad his change, he would show me the few coins nestled in his palm. "When we get home, we'll start filling the jar again." He always let me drop the first coins into the empty jar. As they rattled around with a brief, happy jingle, we grinned at each other. "You'll get to college on pennies, nickels, dimes and quarters," he said. "But you'll get there. I'll see to that."

The years passed, and I finished college and took a job in another town. Once, while visiting my parents, I used the phone in their bedroom, and noticed that the pickle jar was gone. It had served its purpose and had been removed. A lump rose in my throat as I stared at the spot beside the dresser where the jar had always stood. My dad was a man of few words, and never lectured me on the values of determination, perseverance, and faith. The pickle jar had taught me all these virtues far more eloquently than the most flowery of words could have done. When I married, I told my wife Susan about the significant part the lowly pickle jar had played in my life as a boy. In my mind, it defined, more than anything else, how much my dad had loved me. No matter how rough things got at home, Dad continued to doggedly drop his coins into the jar. Even the summer when Dad got laid off from the mill, and Mama had to serve dried beans several times a week, not a single dime was taken from the jar. To the contrary, as Dad looked across the table at me, pouring catsup over my beans to make them more palatable, he became more determined than ever to make a way out for me. "When you finish college, Son," he told me, his eyes glistening, "You'll never have to eat beans again - unless you want to."

The first Christmas after our daughter Jessica was born, we spent the holiday with my parents. After dinner, Mom and Dad sat next to each other on the sofa, taking turns cuddling their first grandchild. Jessica began to whimper softly, and Susan took her from Dad's arms. "She probably needs to be changed," she said, carrying the baby into my parents' bedroom to diaper her. When Susan came back into the living room, there was a strange mist in her eyes. She handed Jessica back to Dad before taking my hand and leading me into the room. "Look," she said softly, her eyes directing me to a spot on the floor beside the dresser. To my amazement, there, as if it had never been removed, stood the old pickle jar, the bottom already covered with coins. I walked over to the pickle jar, dug down into my pocket, and pulled out a fistful of coins. With a gamut of emotions choking me, I dropped the coins into the jar. I looked up and saw that Dad, carrying Jessica, had slipped quietly into the room. Our eyes locked, and I knew he was feeling the same emotions I felt. Neither one of us could speak.

This truly touched my heart. I know it has yours as well. Sometimes we are so busy adding up our troubles that we forget to count our blessings. Never underestimate the power of your actions. With one small gesture you can change a person's life, for better or for worse. God puts us all in each other's lives to impact one another in some way.

As I read this I wondered Maybe there was a reason that I never married and had children. God might have had this planned for me all along. I hope that I have made mother's life better. And I hope that doing this blog helps someone else along the way.

Meltdown

2006-09-08T22:52:00.000-05:00

Not a good day. We started off on the wrong foot and went downhill from there. Mom refused to get up to change her depends. I managed to get her up enough to slip a pee pad under her in case she leaked, gave her breakfast plus meds and then let her rest for a while to let the pain pill kick in. And hour later I tried again. I have to admit that at one point I threw the (dry) depends at her. I started crying. Mother looked at me and for the first time in a long time, I think she connected. She patted the bed next to her and told me to sit down, then she patted my arm and said “I love you.” I laid my head on her and cried while she stroked my head. At noon I gave in to frustration and pulled the depends off of her while she lay down. I had to have her stand up to pull them up though, and she stood. While leading her around the bed to her food she said she had to go to the bathroom. I got her in there, changed her depends again, and back out to the bed where she ate lunch. We then took a much needed nap. She sat up and ate supper with no problem. At 7:00p.m. I tried to get her up to take her meds, change her depends again for night and we went through the same thing – her screaming and being stubborn. A half hour later I gave in and called my sister-in-law. She didn’t cooperate very well for her either. I went to sit on the porch and could hear mom screaming – even though her room is at the back of the house. You’d think we were torturing her, but we weren’t doing anything other than trying to get her to sit up. I’m sure my neighbors must think I beat the woman. At one point I came into the room just as Bebo (my sister-in-law) was telling her how I take care of her – mom said “No she doesn’t, I do everything”. When I started to say something mom looked at me and told me to shut up. So I left again. Bebo managed to get her changed and her meds down her, then we covered her up, said goodnight and left her. My agoraphobia is really hitting me – I can’t make the necessary phone calls – my stress levels are so high that I can’t manage the panic attacks. Plus I’d only had 2 ½ hours of sleep Thursday night (although the nap that afternoon helped). We’re also facing an anniversary this weekend. Sunday will be 1 year since my brother (Bebo’s husband) died. Bebo took the phone numbers for Social Security, Medicare and Human Resources with her and she’s going to make the calls for me. We need to get someone in here to give me relief. It’s been 7 months since I had a day out. Bebo watches mother on Thursday nights and Saturday mornings so I can work – but she’s in school too. I need a break. Mom is too cognizant of her surroundings to put her in a nursing home – I don’t want to help the AD progress, but I can’t do it alone anymore.

I'm Still Here

2006-09-07T23:59:00.000-05:00

Sorry I haven’t been around much – just a bit overwhelmed at the moment, and quite frankly, after I get through taking care of mom in the mornings I’m just so frustrated with AD that I don’t want to talk about it. It now takes me about 45 minutes of arguing and cajoling to get her out of bed, onto the pot and then back into bed. I’ll admit, there’s a bit of yelling going on too. On both sides. Her arthritis is really bothering her, and I know it’s painful, but it has to be done. By the time I get finished with that there’s housework, then lunch and naps, supper and evening TV. It seems that there isn’t any time to blog that hasn’t just followed dealing with AD. She cries a lot during the night. I used to run in every time, thinking there was something wrong, but when I ask her she says she’s fine, so now I just listen for a more hysterical cry. I can hear her babbling, having conversations with people who aren’t there. I’m feeling more and more alone, frustrated, tired, stressed. My agoraphobia is worsening – phone calls to strangers will bring an almost immediate panic attack. Going to work twice a week is the only break I get. People have offered to sit with her, but I don’t know how she’ll react to strangers. Getting her to eat is difficult, so I hate to leave her during eating hours, even with those people she knows, because I don’t want to scare anyone away. I need them more for grocery shopping than my getting out.

I’d forgotten how cathartic this is to just get things out.

I promise not to let it go so long next time.

A Letter to My Mother

2006-08-23T22:05:00.000-05:00

I was looking through the archives of my other blog and noticed this Mother's Day letter. Since it ties in with the post below, I thought I would share it.

I Miss Her

2006-08-21T21:50:00.000-05:00

Deb mentioned something about not being able to turn to her mother for support anymore and this feeling is echoed in me. I have to give you some background in order to fully understand my relationship with my mother. I’m the youngest of four children – the first three were born in 1949 (November), 1952 (May) and 1953 (December) – mother had about 2 ½ years with my sister Cathie before my brother Howard was born, followed by David 19 months later, then there wasn’t any time for one on one with any of them. I came along in 1960 when David went off to school. Just mother and myself all day long during the school year until I started kindergarten in 1966. We established a bond that doesn’t exist with the others. Mother lavished the attention on me that she hadn’t had the luxury to do with the others. I was spoiled. She was my support, my strength through so much of my life. Add to that the fact that Cathie and Howard, personality wise, were more like my father and David and I are very much our mother’s children and you begin to get the idea. Mom was your typical housewife; it was her job as it was for much of her generation. Being a mother was how she was defined and she took her job seriously. Mother came to every event we were involved with, from Scouts, to Little League, Band performances, piano and voice recitals – she was there. My father wasn’t. He didn’t work all of the time, but fishing, hunting, etc. took precedent over us. I feel the loss of that support so badly that it’s almost physical. My best friend is gone, replaced by this stranger.

The hospital bed arrived today and she’s not happy with it – but did I think it would be different from anything else. She’s not happy about a lot of things.

I’m so behind on everything. I haven’t been blogging much because of internet problems and I’m also working on a project for my writing stuff. No actual writing right now, but that’s okay. I also have to get working on the webring letter that Michael wants us to write – I also need to email Michael and let him know that I will do this. I just can’t seem to catch up on stuff. Part of it is the heat – over 30 days of 100 plus temps and I’m wilting – brain fried. It’s so hot that even in the house with the A/C running, I’m miserable. I get renewed energy when the temps start falling – the complete opposite of those Winter Blues people.

More Mom's Humor

2006-08-17T23:42:00.000-05:00

This is an entry from one of my old abandoned blogs, dated August 26, 2005. We were still having fun then.

Wondering if mother wanted to attend a family funeral we of course asked her. After a slight pause she replied "Oh I don't know, whatever Juanita wants to do." That's easy, as soon as we find out who Juanita is we'll know the answer.
For the following story you must remember 2 things: Our attic is one of those "tucked under the eaves" jobs that you have to pull a ladder down and climb up to, and my brother Howard had to move home for awhile after a divorce and his kids visited every other weekend. Simple, just remember this. I don't know how this came about, I wasn't there, but ... while talking to my sister-in-law one day, the subject of sleeping arrangements came up. "Well, we used to put Howard and the kids up in the attic." Funny, I thought that was where Juanita slept.
Once, when my mother was in the hospital, my sister went to visit her. Walking into the room she asked mom how her breakfast was.
"Do you know what they served me?" oh mom had her dander up.
"Well, no mom, if I did I wouldn't have asked you." This retort, of course, was wasted on good ol' mom.
"Cream of Tartar" mom was really indignant.
"Oh I don't think so," much older sister replied.
"Well, they did" now she'd done it, much, much older sister had questioned the gray-haired one. Cathie thought for a moment ...
"Do you mean Cream of Wheat?"
"That's what I said, Cream of Wheat."
Thankfully, much, much, much older sister didn't argue that point. "Well, did you eat it?" Mother gave her one of those looks mom's get when you've asked them something really stupid. "Of course not. I sent it back and asked for oatmeal."
"Did you eat the oatmeal" Cathie has always been a determined girl.
"No, I was full by then so I saved it."
Shouldn't have asked and definitely should not have gone for the follow-up. "Where is it?" Another one of those looks "In this drawer" she said, pointing to the bedstand. (It's really for Juanita later).

When informed that her sister from California (which is exactly what mom calls her) was coming to visit her, this was mom's first response. "Well, she's not sleeping with me." Nope, figure we'll put her in the attic with Howard and Juanita.

Mom calls her walker "Walker, Texas Ranger." Just thought I'd throw that one in.

I've been asked to give the full description of a recent trip to the doctor. I've told part of this, but there really was more - and yes, it's true. Mother rarely "acts out" in public so most people don't even realize there's anything mentally wrong with her, but on this day she was really "feeling her oats". And it wasn't Cream of Tartar. To make this easier, anything sung will be in bold print. It began as we walked down the hall back to the examining room. The nurse was in front, mom, with the Texas Ranger, in the middle and me bringing up the rear. Suddenly, ahead of me I hear her sing "Here I come to save the day." Okay, this is different - who's in trouble? Juanita? We've reached the room and mom gets in her gown. Sitting on the table she starts swinging her legs.
"Whatcha doing mom?"
Those Irish eyes get that impish glint to them and she smiles "I'm warming up so I can kick the doctor when he comes in."
Good, that should guarantee a 'no shot' day.
Tired, she leans back against the wall, which of course comes in contact with her back through the gowns much beloved opening. "Ooooh, that's cold ... In the cool, cool, cool of the evening" (for the uninformed, that's an old song she and Juanita used to sing).
The doctor comes in, and no, she didn't kick him (Juanita thought about it though) and he asked her "What's my name?"
One of those looks "What's the matter, can't you think of it?"
"I can think of it, I want to know if you know it." He's really patient.
"It's doctor" she said, smugly.
"That's correct, but what's my full name?" She told him.
"What's your name?" he then asked.
A sly look came across her face "Mary Catherine" she stated emphatically.
I looked at her, she looked at me "Well, it used to be."
I'm still looking at her.
"Mary Isabel, Isabel, is a bell."
You can say that again.
"Okay" he points at me "What's her name?"
Mother gave a huge sigh "I don't know, I just call her stupid." And I call her late to supper.

Laughter IS the Best Medicine

2006-08-15T22:01:00.000-05:00

Readers Digest, September 2006 in an article by Dan Ferber, PhD entitled The Funny Factor, p. 102

But a growing body of research suggests that humor can tune our minds, help us learn, and keep us mentally loose, limber and creative.

In that case, my mind must be very finely tuned.

I found this interesting as my family has always faced adversity with laughter. It seems to be ingrained in our genetic makeup as the trait is shared by extended family members as well. I’ve often wondered if a sense of humor could be inherited, but I digress. It’s been known for a few years that laughter is healing, it relaxes the body, which in turn helps the body cope with stress related issues. For more on this research, follow this link.

So the decision to face AD with laughter was an easy one for my siblings and me. We chose to find the humor in each situation instead of wallowing in the self-pity basement. We never laugh at mother, but we do trade humorous stories with each other about the things that she does. I used to write about them on my other blog until I told a humorous story about a Fourth of July incident with my mother and her older sister. The responses were mixed, but mostly in the “I’m so sorry” “How sad” camp. I kept telling them that it wasn’t sad – it was funny, that I choose to laugh instead of cry. Then Deb commented (her introduction to me and the subsequent creation of this blog) and said that it was funny, that she understood, etc. The light bulb went on at that point. What is funny to us in this caregiver position would not necessarily be funny to “outsiders”. It’s one of those shared things.

Therefore, a little anecdote from this evening. First, mom is eating again. Not her old appetite but at least she’s finishing the small amount of food we’re giving her where before she would take only a couple of bites and decide she was finished. So tonight she finishes her meal, I get her tucked into bed for the evening of TV and head off to the kitchen with the supper dishes. I was gone long enough to scrape and rinse and then back to her room. I entered just as she was getting out of bed. “What are you doing mom?” She stopped and looked at me. “It’s time for breakfast”. (Um, no, not unless we just had the shortest night on record and if that’s the case, I didn’t get any sleep).

I'm Baaaaaack

2006-08-14T07:31:00.000-05:00

Sorry I sort of dropped off the radar there, but I just needed some distance from AD for a few days and since I couldn't do it physically I just decided to pretend it didn't exist. With mom sleeping close to 18 hours a day it wasn't that hard to do. But now it's back to reality.

Went to see about the hospital bed on Friday. The woman seemed to think we would get it, so that's done. Mom's eating has improved a little - but even a little is better than before. She had a so-so day yesterday. One of my father's sisters dropped by for a short visit, which was good for her. Not too many people call or visit anymore - not even the grandchildren (but that's another rant).

And a word about mom's doctor. So he doesn't like me - I'll deal with it. I don't want to change doctors for two reasons - the least important one being my agoraphobia which sends me into panic attacks at the thought of going to a new place, etc; the number one reason is that this man has been my mother's doctor for close to 20 years - no other doctor will ever know her so well and he treats her like a queen. I just have to trust that he has his reasons for not wanting to put her on those drugs right now.

Didn't Michael do a great job with the new Webring whatever you call it (not enough coffee yet)? I think it's perfect.

That's it for today, more later - I'm still trying to wake up.

A Decision

2006-08-06T21:13:00.000-05:00

It's been a long week. The doctor's visit was a failure - I think I mentioned that he doesn't like me, but is good to mother. He doesn't listen to me, nor does he make time to talk to me without mother present and there's so much I can't talk about in front of her. Result? Maybe a hospital bed if Medicare will pay for it. Nothing else. I never even got to the social worker part - I'd given up by then. He said no anti-depressants until she starts getting angry - um, doctor, she yells and cusses and didn't I just get through telling you that she threw her medicine across the room the night before? No anti-psychotic medication until she starts getting delusional - well, I couldn't talk to him about the visits from Regis Philbin or anything in front of her. I mentioned that she was sleeping all of the time and the only thing he got from that was to say that the medications I suggested would make her drowsy and prone to falling and sleep all of the time - just what I was complaining about. Dear doctor - I wasn't complaining, I was telling you a symptom which can be a symptom of depression. Cripes. She has lost 23lbs since May. She didn't eat well today either. My sister-in-law picked up a couple of singles of Ensure - different flavors so we can experiment. At the emergency room they suggested a g-tube. We've spent the weekend talking about it (long distance to my brother and then on the phone too to my sister in a nursing home) and decided that we would never do that. If she quits eating entirely, she quits eating. We know what is in store for her - she's falling more and more into a world of paranoia and fears - the pain from her arthritis is getting bad too. She's crying most of the day when she isn't sleeping. This was a hard decision to make and I know that there will be many who won't agree with it - but in the end, it's our decision.

Update

2006-08-01T11:06:00.000-05:00

A lot of things have happened in the last couple of days. Mom fell again Sunday night - a stupid accident that happens quite a bit with people who don't have AD. She has this bad habit of trying to pull up her Depends while walking, so of course she tripped over them. With her arthritis and immobile hip, she's no help in getting up. Plus this time we were afraid that she did hurt herself as her leg was caught underneath her and she screamed in pain when the paramedics tried to stand her up. So off to the hospital we went. Six hours later - no breaks, low sodium (which she's had before), dehydration (like we didn't know that with her eating habits lately) and a urinary tract infection. They gave her a huge dose of antibiotics and we started seeing a change in her that night. She's a little clearer now. We did have some fun moments there - she kept singing Rambling Rose for some odd reason, but it was funny. Her humor has been one of the wonderful and sanity saving things about all of this. She has an appointment with her primary care physician on Friday, where we'll discuss having a social worker or someone come in and help weed through all of the red tape about Medicare/Medicaid and her supplemental insurance; see about getting a hospital bed, etc. in here and whatever else we need. She's still not doing 100% great with the eating, but she's better. We're going to buy a lot of different supplements and see if we can find one she likes. She doesn't like Ensure butter pecan shake - which is strange since she loves butter pecan ice cream. Oh well. We'll find something. Anyway, this is why I haven't been around lately - took a lazy day yesterday, got a nap, etc. so I'm doing a bit better too.

Untitled

2006-07-28T22:01:00.000-05:00

Mother hasn't eaten since Thursday afternoon. She keeps throwing up - I don't know what to do. I know it's sinus drainage as she has a dry cough and she says her throat hurts - plus it's mucus that's coming up. She's crying constantly now - I know it sounds selfish but I just want her to shut up! If she's not better by Sunday I may have to take her to the hospital - she's going to scream about that, but I don't know what else to do. To get her into her doctor is a test in torture. I think she needs anti-depressants for one thing. Plus her pain pills are no longer helping her arthritis. She had such a good day on Tuesday, despite falling down. I'm about ready to burst. I'm just praying she sleeps through the night and lets me get some rest before work. She's been up and down out of bed all evening - she doesn't know what she wants. I just want peace.

Falling

2006-07-26T20:23:00.000-05:00

(for those of you [Deb] who go to both of my main blogs, this is a repeat since I was going to say pretty much the same thing on both sites)

One and a half hours sleep, a foot doctor appointment and a small emergency this morning has thrown off my entire day. I’ve only managed to get through the “Mi’s” on my blog list, so we’ll see if the internet holds up after mom goes to bed so I can finish.

The small emergency. Well, I was getting mom ready to go to the doctor’s and she sat on the bed, only she sat too close to the edge and slid off onto the floor. You have to understand that my mom weighs around 183 lbs and all of that is dead weight. One hip is immobile and both legs are riddled with arthritis, so she can’t help me at all. Furthermore, the Alzheimer’s prevents her from fully understanding the simplest of instructions, so my getting her up by myself was impossible. I tried the neighbors house as there are two young strapping gentlemen living there (I think Stephen is 16 and Brian is around 20 – I’ve known them since Stephen was in diapers). No go – those two boys could sleep through an elephant stampede. So I had to call 911. And would you think that at least one of those firemen would be young and sexy? No chance. Mom is okay, btw. Anyway, they got her up and I had her rest for a while before attempting the dressing thing again. While they were in the room it became apparent that that dresser has to go – there would have been no way to get an ambulance gurney next to her bed. So, once again, I’ll have to put-off finishing the study to work on emptying out her chest of drawers and transferring clothes to her dresser. Then we have to get that sucker out of there. Doctor’s appointment went well, and she was up for the day. That only left time for a short nap and I am exhausted, so I'm off to bed early.

Stopgaps

2006-07-25T09:43:00.000-05:00

I’ve got a nice cosy chair to sit in, a personal fan to blow on me and a lamp to read by. Now all I need is a little more space for a table of sorts to set my drink on, a clock, phone, etc. because the cats will have fun with that tray. We’re going to have to take out the dresser you see to the left of the chair, and move things around, but I think we can do it. She still has a chest of drawers which the TV is sitting on – without dad she doesn’t need both, in fact, the chest is full of junk. She’s also given me permission (she won’t remember though) to take down the decorative grouping on the wall behind the TV and put up family photos. Today she finally refused to sit on the toilet – it just hurts her too much to sit down that far. Her right hip is pretty much immobile and her legs are riddled with arthritis. Bebo is going to stop at Wallyworld tomorrow after work and pick up this toilet thing I saw – mom won’t have to sit down that far. It’s a stop-gap until I can get the thing I want – an apparatus that sits over the toilet with bars on the side to help her get up. We’ve pretty much come to the conclusion that she won’t be leaving the bedroom much. I have to see what I need to do to get a hospital bed – she’s having a hard time sitting up and it’s just practically pulling my arm out of the socket to get her into a sitting position. A hospital bed would raise her up and there would be bars to help her get out of bed. I’m hoping Medicare will pay for it, because if it doesn’t then she can’t have one. She’s been eating a little better the last couple of days, so that’s good.

Still having trouble with the internet, so I guess I’m going to have to call them too. It could be the DSL box since it’s one of the first models – you think?

UPDATE: Couldn't post this last night because of the internet, so by this time Bebo has arrived with the toilet thingy and it works like a charm. Yay!!!!

My Kingdom for a Nap

2006-07-21T20:38:00.000-05:00

Mother has decided that naps, for me, are a no-no. I lay down and within 45 minutes to an hour she's in my room asking me what I'm doing, not that the closed eyes and snoring are any clue. This wouldn't be so bad if she also didn't decide that I needed to be woken up in the middle of the night. Friday's are hard for me since I close the store on Thursday nights, meaning that my body is wide awake when I get home around 9:30. I'm usually up way after midnight (2:00 a.m. this time) and her waking me up at 4:00 makes the 6:00 alarm clock a scary thought. So naps on Friday is a must - just not this Friday.

THE CHAIR arrives Saturday which means my life shut in mother's room will begin. It's almost half-way that now since she calls me in there every five minutes or so, which makes this week of cleaning hard to do. I've already started ordering season DVD's of shows that she likes because the cable in that room is limited. We have what are referred to as A and B channels, and that TV only gets B channels, like Sci-Fi (not for her) and Court TV (also a no-no), but History Channel, TCM and GSN do help. So yesterday the 6th season of I Love Lucy and the 1st season of The Rockford Files arrived (mom loves Rockford). I have to make sure that I buy things that I don't mind watching.

This week off of the blogs has been hard, but necessary as I have managed to get a lot of organizing and cleaning done. Hopefully I'll finish by Monday (it's been so hot that I haven't been able to clean after noon). I've also got to figure out someway to organize my blogging - since my time away from mom will be limited. Oh well, something else to think about.

That's it - I know, very deep and revealing post, but I'm too tired to think of anything else. Well, there is the Regis Philbin thing - which I'll blog about later.

Take care.

Party On

2006-07-17T23:06:00.000-05:00

I’m toiling away day after day (okay, only 2 days – but it feels like forever) trying to get this house cleaned and re-organized for mother. I’m making space in the dining room and den for a walker-friendly environment, and as I move furniture I’m sweeping or vacuuming – tossing large amounts of dust bunnies into the air. I’m sweating my “you-know-what” off. I’m not visiting blogs (withdrawal has been hard) because I’m determined to finally get things done (my study has been waiting to be put back together since it was painted in May). Why am I telling you this and what does it have to do with mom? Because after I drag my tired butt to bed, she’s obviously having parties. How do I know? When I went to wake her up this morning she tells me that Regis and his wife had just left. She’s not only having people over, but famous people at that. I’m quite miffed. I wouldn’t have minded meeting Regis and Joy Philbin.

I’m still working on the VCR/TV/DVD situation in her bedroom. Bebo and I bought a chair on Saturday (yes, my friend Susie came and sat with mom while I got out for 2 hours – mind you, about an hour of that was shopping for mom stuff, but hey, I’m not picky) and I’m still waiting for it to be delivered. “They” were supposed to call me today or Tuesday to let me know when. She enjoyed lying in bed this morning and watching “Support Your Local Sheriff” except she just couldn’t understand what Rockford was doing. And I’ve discovered that it’s hard to clean in a separate room while she’s around. Every five minutes she would call me into her bedroom and ask what I was doing. Sheesh.

A Good Day

2006-07-15T00:36:00.000-05:00

Mom got up Thursday morning, ate her breakfast and then declared she was going to get dressed. After I wiped that surprised look off of my face, I went in to help her. She hasn't changed out of sleep shirts in weeks. But there she was, pants/shirt, shoes and socks. She sat up all morning and then took a bit of a nap (see previous post about nap) and then was up for most of the day. Bebo says that she wanted to go to sleep around 7:00 and that she had to make her stay up until 8:00 - but still, that was good. Of course, that meant that she was down today.

I'm going to have to make some changes though - get out the credit card and buy a recliner or something so that I can sit in her room with her. I know that a lot of times she's in bed because her arthritis hurts her and she's more comfortable there. I'm also going to have to do some switching around of TV's and get another DVD player - maybe some more DVD's. If it weren't for the fact that she does go in to the den from time to time, I would move the recliner, TV and DVD player from in there, but oh well.

Hmmm, not a very enlightening or deep post, but it'll do for today.

I'm Tired

2006-07-14T14:27:00.000-05:00

My mother's lunch menu for the last couple of days: Wednesday - half a ham sandwich and a banana; Thursday - Ritz crackers w/summer sausage and a banana. Why am I telling you this? Each time she said "You give me this every day" - very irritably. Two problems - um, no Thursday was different than Wednesday and there isn't a lot she will eat. So today I gave her a hot dog w/ sliced apples. "You give me this every day" in that same irritated voice. I had to go in to the kitchen and cry. I'm trying my hardest, but when she suddenly declares that she doesn't like anything that she used to, my options are getting low. I've even tried supplements, but this one is either too sweet, or that one is too ucky. This is just a venting post. I know you don't have any magic words, I just needed to get it out.

A Nap is a Terrible Thing to Waste

2006-07-13T17:50:00.000-05:00

Those who are unfamiliar with my routine (probably most of those who come by here) don't know that I must take a nap on Thursday afternoons or I am just dead on Friday. I work Thursday night and don't get home until after 9:00 p.m. It takes me a while to settle down, usually around midnight, but sometimes later. So I laid down a little before noon, mom went to her room to nap too. At 12:30 she was back up. I settled her in front of the TV and went back to bed, nothing unusual there. It was close to 1:00 before I drifted off. I awoke when her door closed. Laid there and listened to her open the door, go down the hall and then back in to her room. She came out again and went into my bathroom. I looked at the clock - 2:18. Hmmm, not much of a nap and I had to get up by 3:00. She came out of the bathroom.

"What's the matter mom?"

"Someone's going to get killed"

So what have the cats done this time? "Who mom?"

She came into my room and sat on the bed. "Regis says his dad is going to be killed" (she has a fixation on Regis Philbin).

I'm not quite awake yet. "Mom, Regis is close to your age, I think his dad has been gone for some time."

"Oh no, that's not right" she became more agitated.

"Who told you this?"

"He told me when I was downtown."

I guess my disbelief must have shown on my face as she got up in a flounce and left the room as only an arthritic woman can.

So, now I'm worried about Regis' dad.

I'm going to be so dead tomorrow.

Memories ... Fight the Corners of My Mind

2006-07-12T21:47:00.000-05:00

I struggle for words now, simple single syllable words that should come easily to me. They elude me - flitting around beyond my reach so I am often unable to complete a simple question. Names, places of my past are fading. This frightens me beyond anything else. My mother is one of four sisters. The eldest, Alice, has senile dementia. The one right below my mother, Golda, has Alzheimer's. Only the youngest, Lois, has, so far, escaped this disease. My mother's family has other mental disorders. Her older brother Tom is schizophrenic, she has a niece that is paranoid. My brother Howard was bi-polar with schizoid affects; I'm clinically depressed. My brother David suffers from strokes that have ravaged his body. Only my sister Cathie seems to have avoided anything neurological (although that's just a matter of opinion - I've always thought she was a basket case). I fear losing my mind. I know, intellectually, that being a caregiver exacts a huge toll upon the brain. I'm tired, overwhelmed and this can effect the thought processes. I've also read that I'm burning brain cells that will never regenerate. As a writer I worry about my future in the world of words. If I can't remember how to spell something, there's always a dictionary. But not being able to think of a word - I don't know of any book that will help with that. Of course, my mind automatically goes to Alzheimer's. I think that's normal.

I saw on the news one day that people who worry alot have a higher incidence of developing Alzheimer's. Great, something else to worry about.

Well, I Guess I Won't Be Doing That Anymore

2006-07-11T22:54:00.000-05:00

I finally got out to the store this morning. Mom was doing good, sitting up in the den and watching television. I had about 6 bags of cans to drop off at the recycle bin at Wallyworld, but hadn't had time. So at 9:20 a.m. after telling mom about 3 times where I was going, I took off. I called mom a couple of times from the store, even had my sister call her. A little before noon I dragged myself in to the house. Mom was sitting in her chair bawling her head off. She didn't know where I was and thought I had left her. I explained to her where I had been, said I had called her twice, but she had no memory of it. So no more trips to Wallyworld, or maybe not even to a regular grocery store. My sister-in-law, from this day forward referred to as Bebo, told me later that whenever she watches mom that's all she'll talk about - "where's Evelyn" (my real name), "When will Evelyn be back." I hadn't known, Bebo hadn't told me because she didn't want to worry me. I knew that whenever I left for work mom would quiz me about where I was going and when I would be back. Now I know.

I always said that I would take care of her here in this house (barring any physical problems) until she no longer knew it was her house AND no longer knew who I was. The house is beginning to fade for her, but I guess I'm still clear in her mind.

So I guess it's time to look for someone to sit with her while I'm going to the store. I refuse to do that on Sunday because when I can get out - that's my day out, not a day to run around doing errands for her.

I wasn't aware of just how much she had become dependant upon me.

I'm Supposed to Take Care of You

2006-07-11T22:53:00.000-05:00

I saw my mother today. You know, the one that I lost a couple of years ago? I was sick Sunday night and a bit of Monday morning, although the morning was more exhaustion from the night before. Anyway, I got mom up for breakfast, told her I was sick and she had the choice of going back to bed or staying up. Thankfully, she chose bed. At noon we got up and once again I gave her the choice. I said I was sick and was going to bed. She looked at me and said "I'm your mother, I'm supposed to take care of you". I stopped on my way out of the room and looked at her. Bless her. If she had been in any physical state to do so, I would have let her. But as it is I would have had to stay up and supervise. But just for those few minutes our roles were reversed once more, I the child who was sick; she the mother who would take care of me.

I saw my mother today - and she wanted to take care of me.

Are you my mother?

2006-07-09T11:41:00.000-05:00

She looked up at me, blue eyes clouded and confused. I couldn't believe this was happening, not yet. She'd only been diagnosed 4 years prior and I had hoped that memories of me, of our relationship would be the last to go, to fade from her mind.

"No momma, I'm your daughter"

"Well, of course you are." Her blue eyes sparkled as she looked at me, she was there, right in the moment. Mom had come back to me.

The first few years of Alzheimer's, for me, were the hardest. Well, that's not true. The first year was pretty easy as my father was still alive and they spent their days together and not a lot was required of me. Then my father's health became worse and we lost him in October of 2000. It was just mom and I. She was officially diagnosed with Alzheimer's in January of 2001. Watching my father die in hospice was a far easier task. He took his last breath and he was gone. Alzheimer's is the death of a soul. Some people argue that point, but that's how I feel. My mother, everything that she was, left me last year. There's a stranger in her bed now, wearing her clothes, sitting in her chair. Alzheimer's is a far more cruel death. That first year after diagnosis there would be days when I questioned the doctor's words. Mom seemed fine most of the time - oh, a few memory lasps, but what elderly person doesn't suffer from that malady? And then, suddenly out of the blue, she wouldn't remember how to start the dryer, her words were wrong - Maloxx for Matlock, for instance - and it soon became evident to me, if not to others, that mom "wasn't right". I think of this as a battle, with Alzheimer's being the Devil. For those first few years we fought triumphantly, keeping him at bay. But in the last few months he's strengthened and we have found ourselves on the losing side. Mom spends most of her days in bed now, confused about even the simplist things like how to stand up. She still knows who I am, but the confusion of our roles comes more often. I know that someday soon she'll look up and I will be her mother.

Word Cloud

2006-07-08T23:31:00.000-05:00