Experts in the Field

You always hear the saying, "Expert in the field" or "Professional opinion"  usually prefaced by Dr. So and so. What makes someone an "expert" on "knowledgeable" in an area? In my opinion it's not the doctor, nurse, or even the hospice aide. It is you the caregiver. You live with your loved one, you KNOW them. We know all the "technical" terms the professionals use, because we have researched it thoroughly. We know what it's like to live in a day in the life of our loved one.

Let's take it another step further: the REAL expert in the field is the one going through whatever it is. When I was a cancer patient, I knew what it was like to be a cancer patient. The diabetic knows what it's like to be a diabetic. The mental health patient knows what it's like to struggle with the demons of mental illness. Then why wouldn't it be the same for a dementia patient? Yes, I know they have trouble expressing themselves, but so does the autistic child, the mentally ill patient, for that matter the terminally ill cancer patient. Why are we so quick to dismiss the one actually experiencing the illness? I think it is fear of the unknown.

What we don't understand scares us. We humans fear what we don't understand. Animals don't. Animals trust. Trust in what you say? Good question. They trust their instincts, they trust their Creator, they trust the safety of the herd. The domesticated trust us... Humans. Maybe they shouldn't, we aren't all that trustworthy.

How I survive being a POW of Alzheimer's.

I am my 90 year old mothers sole caregiver, what exactly does that mean?

In a nutshell...
I pay her (our) bills.
I do her laundry.
I feed her, cloth her, give her baths.
In addition, I make sure she takes care of her other personal hygiene responsibilities, such as brushing her teeth, clipping her toenails and fingernails, and having her hair done. I do all our grocery shopping, make her doctor appointments and fill her prescriptions. I lay out her daily meds, prepare her meals, and organize her day. I take her for walks when she's able, and plan fun things for her to do. This is my life.

I also have a 16 year old daughter who I'm the sole guardian of. She also makes huge sacrifices. I make sacrifices. I don't get to go to many, but a scarce few of her school activities (those that I can drag mom to). I have been doing this for nine years, now. Life has passed me by during this time. I have now been unemployed from my career field, scientific research in the area of microbiology with the E.coli 0157 bacteria that causes Hemorrhagic Colitis (HC) in the elderly and Hemolytic Uremic Syndrome (HUS) in our very youngest). I have now been out of this field for a long enough time that I will not be able to go back into it without further education and at 51, I don't care to. Therefore, I started my own business in home care, as that is what I know.

I have two caregivers that help me twice daily for a total of about 3 hours each. This allows me just enough time to drive the 30 minutes into the city to buy groceries, which takes about an hour total, and then a 30 minute drive back home. The other 'respite' I use to go to a support group, which is crucial to my sanity. I love my caregivers, because i get to "hand pick" them, as that is my business. I have been able to get some of the best. They go above and beyond the call of duty, and that is what I would do if I were caring for someone with this horrible disease. (Oh, wait! I am! :)

So how have I survived nine years in the trenches of Alzheimer's? Humor is one way. If you read my blog, you'll see me do a lot of this. The old saying, "Laughter is the best Medicine" really is true. Another way I've survived is to stay focused on me. That is hard to do when your focus 24/7 is caring for someone else. But if I don't focus on me occasionally, and take care of me... ME falls apart! I can't allow that. I have too many people depending on me, so I carry on...

In what ways do I "focus on me"? I don't mean this in a 'vain' way, or a self-serving way. What I do mean, by keeping the focus on me is how do I feel physically? Do I need to take care of a physical need, so I can go ahead and continue to take care of mom? Recently this surfaced with a female problem I had, that resulted in sonograms, a biopsy and now treatment for hormonal issues. (I just thanked God it wasn't cancer!) Another way I "take care of me" is to get adequate exercise. This has to be apart from my walks with mom, as she doesn't walk fast enough for me to get the aerobic benefits from it. However, I do enjoy my walks with mom, in a more 'spiritual' sense... stopping to enjoy the flowers (mom does this every day), noticing a Cardinal that is perching in a tree, seeing something unique in the colors of a bushes fall foliage, that if it weren't for the enhanced sensory perception that comes with Alzheimer's, I wouldn't have seen, via mom.

Surviving the trenches of being an Alzheimer's caregiver takes skill and ingenuity. I find ways to entertain myself for one. I try to "make a game" of housecleaning, for example. How many jobs can I get done in a day? I make a list:  Job one: wash dishes. Reward: spend 15 minutes on facebook. Job two: Vacuum the living room and mop the kitchen floor: Reward: take a walk with my dog, Alba. Job Three: Clean the bathroom (which I hate): take myself (and mom) out for ice cream (especially hated jobs require bigger rewards!) If I can do three major jobs in one day (a major accomplishment for an Alzheimer's caregiver) I give myself another reward. Example: rent a movie from redbox and watch it with my daughter (and mom.)

Ok, time to fess up, those of you who really KNOW me, know that I spend way more time on facebook than 15 minutes! LOL So, this new "game" that I mentioned is something that I'm going to try today, wish me luck! I'll continue to blog on this subject tomorrow and let you know how I do! LOL

Where have all the people gone?

I've taken lately to inviting Jehovah Witness's in for coffee, as that is the only company I get these days. While I may joke about it, it is not a laughing matter to me, however. We have been shunned by the church that we have attended for all of my life, and all of my mother's married life. I also had a preacher from a different larger church that we attended for a year, after trying to find support somewhere else other than the small church that I grew up in (thinking that was the problem), tell me that I was "selfish" for expecting him to come and visit my elderly mother, who is a shut in. 

Family isn't much better, one visit by one group of family in 3 years, and a refusal to come to her 88th birthday party 3 years ago, because they had seen her 6 months prior? Seriously? She might be dead in another 6 months! Mom is still active and able to carry on a conversation, she is not unresponsive. She might forget what she just told you, but she still has much of her same personality. They came before, why not now, with the onset of Alzheimer's? I cease to try to figure it out.

Friends haven't been much better. To date I have lost two, and the others don't even come or call anymore. I have my loyal facebook friends and Memory People support group (also on facebook), but that is it. Makes you wonder what the world is coming to. It used to make me mad, real mad. In fact, trying to 'reason' it out and stand up for myself, was what caused me to lose the two friends. I guess they weren't "real" friends after all, so I just let them go.

I often find myself lost in a desert oasis. I know those are contradictory terms, but life is often like that. It can be lush and green on the one hand and dry and barren on the other, much like our spiritual life. We can put forth a "Front" of lush green pastures and good deeds untold, but when the poor come knocking on our door, do we turn them away? As Jesus said, in Matthew 25: 31-46, “When the Son of Man comes in his glory, and all the angels with him, he will sit on his glorious throne. All the nations will be gathered before him, and he will separate the people one from another as a shepherd separates the sheep from the goats. He will put the sheep on his right and the goats on his left. Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’ Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?’ The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’ Then he will say to those on his left, ‘Depart from me, you who are cursed, into the eternal fire prepared for the devil and his angels. For I was hungry and you gave me nothing to eat, I was thirsty and you gave me nothing to drink, I was a stranger and you did not invite me in, I needed clothes and you did not clothe me, I was sick and in prison and you did not look after me.’ They also will answer, ‘Lord, when did we see you hungry or thirsty or a stranger or needing clothes or sick or in prison, and did not help you?’ He will reply, ‘Truly I tell you, whatever you did not do for one of the least of these, you did not do for me.’ Then they will go away to eternal punishment, but the righteous to eternal life.”

Is this the state of the world today? It would appear so. Jesus also warns us of this in the end times, peoples love will wax cold. "And because iniquity shall abound, the love of many shall wax cold."  Matthew 24:12. This would appear to be what is happening. There is no love there, no love of God and no love of our fellow man. We live in a rat race society and if you don't keep up you get run over, or left behind. (Hmm...seems like there's a book  by that name!) Simple as that.

Out of the mouths of grandmas

You've heard of the saying, "Out of the mouths of babes" when applied to small children having words of wisdom. I think there should also be a saying "Out of the mouths of grandmas." Mom always has the "perfect" perspective on things. Sometimes I think, like children, they cut through the fluff and get straight to the chase.

Just recently I was cleaning my house frantically for a birthday Open House for my mother's 90th birthday. There were a group of church ladies that were coming that afternoon and I wanted to be sure that the house looked "perfect" for them. I also knew that another artist friend of hers was going to be dropping by with her son. I got the house pretty much the way I wanted it by the time her "artist" friend arrived. We had a nice 2 and a half hour visit and they left. After a short lunch, mom lay down for a nap. One of the church ladies then called and said they were going to be post-poned to the following day. I said that would be fine.

Well, I have a teenager too, and the teens decended on my house that evening and the following day. By the time the church ladies got here my house was a wreck! There were dirty dishes that had to be washed, spoons also. I hadn't even had time to myself get cleaned up! The first thing that they noticed when they arrived was I was in my bare feet. I laughed it off and said, "at least I'm not barefoot and pregnant!" Since I was unmarried, they did not think that funny. Then we came into the kitchen and sat down for cake and ice cream. The conversation slowly turned to my love life (which is a soap opra at times) and a few deragotory comments were made about that. Yet, I perserved.

Mom took all this is stride and we escorted the ladies out after a nice hour and a half visit. After the dust had settled from their visit, I said this, "Ya know, the lady and her son that probably didn't care whether the house was clean or not got to see my house clean. The ladies that 'expected' a clean house, did not get to see my house that way." Mom responded by saying this, about that: "maybe that is exactly the way it was supposed to be." Wow! Mom sometimes just hits the nail right on the head!

September Solitude

I missed blogging in September. For some reason I think it's because of the tie to Willie Nelson's song "September" http://youtu.be/lkB_d0oFAaM  it leaves me with a melancholy feeling, as if "the days I have to spend with you are few." It's now October and I'm thinking... Solitude, as in Evanescence's song http://youtu.be/-Z7p3abL_P0 a very haunting melody. I usually try to post positive blogs on my care giving experience; but it would not be a realistic blog if I didn't occasionally post how this experience is effecting me emotionally.

As the line in the song says, "I lived through you, you looked through me." I feel like I'm living through you and your experiences, and you look through spectacles that are fashioned by me.

"When will the hole in my heart be mended?" I feel as if I will always have this hole in my heart, even after you are gone. "Who now is left alone, but me?" Evanescence sings.

November has come and gone and now we are six days into December. The days are getting shorter and yet longer at the same time. I drag myself through the motions of getting up, fixing breakfast, doing the dishes, giving mom her bath and putting her down for her morning nap, as if she were an infant. Mom is up for lunch and memories of cutting food for my daughter come to me as I use knife and fork to cut the pork chop into small edible pieces for mom. Mom has forgotten how to use the knife and fork together, I have caught her trying to cut meat with just the fork when the knife has been present. It is hard to watch a woman who was once so brilliant, struggle with such a mundane task.

December brings your 90th birthday, and I struggle with what to do. You sleep through much of the day now, yet you look forward to your Birthday Party, as a child. You've asked for cake and ice cream, and it brings me back to the days when you and dad invited family down to the farm and we made home-made ice cream. Dad is gone now, the farm is gone too... it's just me and you. Solitude.

Christmas is coming. Where is family? Where is the church? Where are friends that said they would never leave your side? The tinsel hangs on the tree like memories of by-gone days. The traces of my childhood scattered amongst the branches of the evergreen. Your fingers remember the Christmas tunes of the piano and we sing "Hark the Herald Angels Sing" and "Oh, Holy Night". For but a little while our hearts lift with our voices and we remember days of old.

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Update: I wrote this in September of 2012, it is now 6 years later, and my heart is still sad. I have now lost mom, my daughter to marriage, my home, my livelihood and almost my life. Again I say, "Where is family? Where is God? Where are the friends that said they would never leave? Why are some lives harder than others? Is it a gift or a curse? What are we to learn from the trials we face? Why do they repeat? Is it because we don't learn the first time? or the second, or the third? Where is the purpose? What is there to gain? Does the journey ever end? These are just a few of the questions I ask myself each day.

Another kind of cookie monster.

A day in the life of my "Cookie Monster":

Mom, "These cookies are very good!"
 me, "They are Grandma Douthit's oatmeal, raisen cookies; so they should be good."
(Grandma Douthit has been gone since 1968)
Mom, "Did you just slip over there and get them?"
(Grandma used to live across the road from us, when I was a kid.)

me, "slip over where mom?"
Pause...
Mom, "That's not right, is it?"
me, "No mom, Grandma isn't there anymore."
Sad face. :(

Mom loves cookies, whether they be home-made or store bought. I do believe her favorite cookie is Oatmeal! Probably has something to do with them being Grandma's, no doubt!

On another day, Mom looks around suspeciously...
"What ya lookin for mom?" I ask.
"Oh, I don't know. Something sweet??" she says.
"Would you like a cookie?" I guess at her desired target.
"Oh, yes! That would be nice." she exclaims.
"What kind of cookie would you like?" I ask, "we have Almond Windmill cookies, or Oreo Fudge Creams?"
She puckers up her face, as if deep in thought. A bright smile spreads across her face, "Fudge Creams!"
I just smile as I watch her enjoy her chocolate cookie.

Sometimes I just can't get ahead of the "cookie monster" so I also try to have on hand a good supply of Graham crackers, saltines and other more healthy "substitutes", such as carrot sticks, creamed cheese in celery, pickles, assorted fruit, cheese and crackers. Of course the latter gets met with a turned up nose by mom.

Hiding the sought after targets of her affection is another challenge. I usually hide them in the "bread box" behind the lessor used hamburger and hot dog buns or the "odditites" cabinet where I keep things that I don't use very often: like the bread maker, the air popper, and the dehydrator. I usually sandwich the cookies between the stacks of extra napkins and the "Keck's Root Beer" refillable bottles that we only take out for our town's annual fall fair.

Mom recently discovered my "bread box" hiding place for the cookies and I found hot dog buns and Hostess pies scattered amuck! She has yet to find the latter hiding place, however... so it's still safe to hide them there, as long as I don't let her see me getting them out. Funny how a woman who can't remember what day it is from one moment to the next, can remember where the hiding place is for cookies!

How to overcome the difficult days

What do you do when the first thing you think of when you wake up in the morning is, "OMG, not another day!" Well, I just think of this song by Fred Astaire and Ginger Rogers,  http://youtu.be/AGUsRGuZb6k "pick yourself up and dust yourself off and start all over again!" Sometimes that's easier said than done, however; when you've not had much sleep from the night before and mom wakes up at 6:30 a.m. instead of her usual 9 a.m., things do not get off to a good start usually. There are a few slogans that I tell myself in this situation: "How Important Is It?" to get upset and lose my cool? Is it worth ruining my day? Is it worth ruining hers? Is it something that is going to make a difference 100 years from now? Probably not.

Another saying that I say to myself often is "Easy Does It". This is to imply that I might try going easy on myself and others. Life is not a crisis, or at least it doesn't need to be. It's all in how I view it. Another good adage for this viewpoint is: One Day at a Time. I can only live so many hours in a day, no need to get too far ahead of myself. "Keep It Simple" is another favorite. I tend to be a perfectionist, and like most perfectionists, if I can't do it perfectly, I am likely not to do it at all. In these circumstances I need to keep it simple, and try not to do things to an unattainable standard that I have set for myself. Sometimes, doin it "half-ass" is ok! At least it gets done that way.

When exasperated by my mother's long tales, I remember the saying "Listen and Learn". Mom is 40 years older than me, wiser, and more experienced. Just because she has Alzheimer's, doesn't mean she has nothing to offer. The opposite might just be true, "because she has Alzheimer's, she has much to offer me" due to the fact that she remember's the past so well, as opposed to the present that I seem to be stuck in most of the time.

What to do with the long hours of "nothing to do"? In order to not become "depressed" in this situation takes creativity and focus. Mom sleeps a lot and I have to be here (or someone does) in case she should get up, and you never know when that's going to be. If she should get up and no one is here, there is all kinds of mischief she can get herself into! One of the big things I do is "blog" about my day. This helps me to "think" through things, much as I'm doing now. I also chose "projects" to involve myself in, such as garage sales (that I put on), cooking special meals, tending my flower garden, sewing, reading, or watching old movies on NetFlix.

One of my biggest projects lately however, has been starting a home care business of my own. Once mom is gone, my income will cease and I will need a replacement income. There is a real need for home care in my area, so I have researched it, and there is not a local home care agency that is privately owned, just companies such as Integrety Home Care out of Kansas City. I feel people from a small town would rather have someone they know, therefore my motto: "Local people, caring for local people."

My last and most successful method of dealing with difficult days, is to tell myself, HALT! "Am I Hungry, Angry, Lonely or Tired?" If I am hungry, eat. If I am angry I have several options; beat a pillow, go for a walk to cool off, journal about it, do some physical labor, or exercise. If I am lonely, pick up a phone, or go to a social function. If I am tired, take a nap... which I think I'm gonna do right now! LOL See you on the flip side!