Friday, November 27, 2009

Caregiver of the Month!


Mom's hospice nurse came today to see mom, and she presented me with a certificate, nominating me as the caregiver of the month! How neat was that? So, it is hanging on the wall next to mom's bed, for all the caregivers who will be looking after her while I am gone next week, to see! Oh, I am going to TN on Dec. 3rd for one of my son's wedding! We will be gone 5 days, and it has been a big deal to arrange a care team for that time as well as do all the scheduling and menus, and instructions, but I am almost done! I will have to post a picture of the bulletin board once I am done!

Wednesday, November 25, 2009

Encouraging Words


Mom's Dr. called today to give me the results of her last blood work, and it was great!
I am always concerned that she is getting enough nutrition. What is enough for her? There is really no way to determine that. I don’t want to have her malnourished because I am not feeding her enough. It is not easy to get much food into her, and at her age and in her condition I have no guidelines as to what enough is! So, I rely on those blood tests to tell me how she is doing, and is she getting enough nourishment.

The Dr. said I am doing a great job. It is not about a pat on the back and it is not about striving to keep her alive till she is 100, but it is my responsibility to do the best job I can as long as I can, to give her the best quality of life I can.

Friday, November 6, 2009

Houdini or Gypsy Rose Lee?


Attempted escapes over the bed rails...

Removing all coverings to allow for easy escape...

Pinned down? No problem, pull till pin releases and arms are free...

Remove further restraint of nightgown, stripped down to the bare ...

Time for plan…..? Hmmm, don’t think I have a next plan.

We are using a new med to help settle her down, she gets anxious and moves around a lot, with in the confines of her bed and with the limitations of her body. It doesn’t appear to stop the middle of the night adventures she has though, since I gave her one last night around 9 and by 2am she had accomplished her tricks! She had been sound asleep when I went to bed too….

Husband came up with a better plan! He got me 4 small but very strong clamps with which I can secure the blankets down. If she can't pull off the covers, she can't get her upper body free to cause mischief! It works! I think is also has sort of a swaddling affect on her as well, like making a baby feel secure when they are swaddled, makes her feel more secure...'tucked in'.

Not Amusing.....


Trying to think of something amusing in addressing this subject matter….hhmmm, nope it’s not coming yet. The subject is what to do and say to mom when she says “I have to go potty”, or “I have to use the bathroom”.

Now this doesn’t occur often where she makes these statements, acknowledging her awareness of the need to go, but when it does, it is almost hearts breaking….I have tried to answer in various ways, none which I am happy with and I don’t know how in her mind she receives the information! I have said, ok, I have to get you up first.

This is usually when I am getting her up either in the a.m. or in the afternoon. By the time I am done, the need has already been “eliminated”. She hasn’t used the bathroom for a long time now, and no longer can be placed on the potty. She is total diaper and has been for months. I told her one time there was another way to take care of her potty needs; she asked me what it was!

I showed her the special pants, and said they take care of it, and then I do the rest! How do you tell your mother it is ok to go to the bathroom in her pants! I just can’t wrap my mind around that yet I have basically said that! What else can I do? It is sad, she has some idea of her bodily functions but no control as to how, when or where she goes. Sad.


What I do now when she says she has to go is, basically I tell her I have to get her ready to get up first....then I will take the time I am ready to get her up she will have already done what she has to do, and I will do what I need to...

The Whining


A new stage in mom’s behavior….whining, when you touch her, move her, or she wants something, or she is in some kind of discomfort. It is hard to figure out and guaranteed to annoy at times!

I asked her, yesterday, are you hurting…no….are you in pain when I move you….no….then why are you making those noises??? Not expecting a reply from her, she says, “I don’t want to be messed with.” ……… ok, that was one of those excuse me what did you say moments, except I doubt that she would be able to repeat it if I asked her to!

It was the chuckle of the day and helps to make light of the annoyance that the whining was causing, at least yesterday!

OMG!  Whine! whine! whine!  Sometimes it is absoultely maddening.  She is sitting in the front room in front of the tv and is non-stop whining!  She probably wants to go to bed, but this is the only time of day she is up for a little while.  Somedays she is quiet, and others she is like she is today, non-stop whining!  Feel like blasting some music or something!  But I won't.....



So much aloneness being felt on this afternoon. I had watched a movie earlier to take up some time. My husband had been gone working on a truck, mom was still in bed, I would be getting her up shortly. Youngest grandson went home at 11, today is his 3rd birthday. There is no going to church today for either of us, no transportation. Sundays have little to no traffic around here, needs to be Monday, busier and noisier. But too many hours left till of those unbearable days.....

What a Difference a Year Makes


Last year mom was walking with a walker, needed some help on and off a chair or couch, was able to feed herself and drink from a cup or with a straw. She could dress and undress herself with minimal assistance, and toilet herself, with minimal assistance. This year, she is total care. The decline came in stages but were quick and sometimes chunks of her independence were just eliminated at one time, it just shook the household some days!

When mom went on hospice care this spring, was after a chunk of these things were going on, and to top it off she was getting bedsores! It just through me in the pit! I was just overwhelmed and overtaken by it all....called her Dr. and said I don't know if she will even be here when you come for her next visit! He set up the hospice for her, which eased things a bit, gives you the security of knowing there is 24/7 help whenever you need it.

I was able to get the sores healed up quickly, and with her air mattress and electric bed, there have been no more sores!

There have been changes since this spring, changes since summer, as I write this it is now Nov., day before Thanksgiving. Even though mom has quite a bit of comprehension, when she is not under the influence of her meds, holidays mean nothing to her. Nothing means anything to her really, other then being comfortable and sleeping when she needs to.

I know there will be more changes to come, accepting that is what is always difficult for me, but I am working on it.


Update - and again, more changes, eating decreased somtimes food is refused, dealing with keeping pressure sores from developing on her heels. Her over all personna has changed. She can't stay up as long as she used to and sometimes I can only get her up once a day. Time is ticking.......


Nourishment is nourishment, no matter what form it is in, pureed and blended, puddings and creams.

Gone are the cups, gone are the straws.

Taste does not matter as she cannot taste, it is just a matter of nourishment, proteins and vitamins, purees and blends. (7-8-09)

4th of July and Mom's Tuna Macaroni Salad - Repost

Fourth of July memories, the assembling together of the Jackson and Picknell clan at Uncle Jack and Aunt Peg’s farm, which later became the campgrounds. Tables and set up outside, filled with every kind of picnic food you can name. Grills going for the burgers and dogs…don’t think we did brats in those days. Geez that sounds like it was eons ago…but in a way it is.

Games would be played, bat mitten, croquet and so on. The usual bunch of cousins would go explore the wonders of the woods, crossing the creek by shimmying over a fallen log, or trekking through the hollow and jumping onto the tiny island nestled in the creek bed there.

The nieces and nephews all babies and toddlers then, now adults with children of their own. The cousins, many of us close in age, now with adult children AND grandkids! An unfortunate thing that the tradition of these 4th of July family gatherings, could not have passed on to each generation to come. But as time has it, age takes over, property is sold, families spread out and go different directions in life, seldom seeing each other again.

One of the things I always looked forward to every 4th of July, besides going to the parade, the activities at the picnic, and fireworks in the evening, was my mom’s tuna macaroni salad! A favorite of mine to this day. I have made it for years, sometimes varying the ingredients according to the tastes of those who would be eating it. But the one and true original, mom’s recipe, has been and always will be the favorite, the one I measure all tuna macaroni salads against…and none compare to her’s! (7-05-09)

7-2-10  I saw this pic when I was looking for some 4th photos to use, and I remembered the Doll Buggy Parades, held on or around the 4th.  I was in some of them riding my pimped out trike lol.  Never one the prize, but it was  a fun thing, distant memories. I don't think they hold them here in town anymore, would be a shame if they didn't.  Kids feel important, special, in their own little parade.

Hospice Begins

It signals the beginning of the end, the final journey, the last days….or perhaps weeks or months. However it is perceived, when hospice comes in, time is limited. This part of it is better not contemplated for long periods, but rather look at the blessing it is to have aids and nurses come and give assistance, as well as real people to talk to several times a week!

Anything I need for mom’s care is provided, her electric bed is awesome. The only extra expense we have for her now, is to buy her nutritional drinks, which is still considerable. Thank you to all hospice workers, what you contribute, the burden you lighten on caregivers, is unmeasurable. 4-20-09

Happy 95th Birthday!

5-7-09 Happy 95th Birthday Mom!
Still May, still trying to decide whether to take any more pics of her. Last ones I took were on Christmas. So many more changes have taken place just since then, I don’t think I want to record those images, but, maybe yet, still time.

It's All in a Look and a Touch

Forgiveness, Love, Compassion 3-26-09
A difficult day, frustrating, trying to get mom to do some of the things she had always done....not wanting to see the 'signs' that she was taking another turn, going through more changes....not accepting what was so evident right in front of me. Like a light bulb moment, only this time it was the bulb shattering and cutting into my soul. I layed her on her bed as the moment was sinking in. I looked at her, she seemed to be in some distress, I asked her if she was ok, was she hurting.....she couldn't articulate at that moment...but she looked at me, deep into my eyes, reached up and patted my face....never did that that look with that touch of her mother hand....she said, "It is ok, I know how hard this is for you....I forgive you for the mistakes, and I love you....." I was shattered, and glued together in that brief moment. Nothing more to say....

The Eyes Have It

To stop and look deep into her eyes must be done with the knowing that I may not find her there, or she look back at a stranger.

But even in those times of the not knowing, when I ask her, Mom do you know who I am, do you know my name, there may be silence only as she searches my eyes for the answer.

Yet I see in her eyes, deep within, the answer trying so hard to surface…

"Yes! I know who you are!” You are my daughter, Donna, my baby!”

Sometimes I give her the answers, and her eyes will light up with the knowing that yes, that is right!

Then I go on to the less painful tasks at hand. (7-08-09)

Acceptance of Change

Accepting what I cannot change, changing the things I can, and accepting the changes quicker, things would go a bit easier if I would do that, both for mom and for me!

As the dementia progressed and caused physical changes as well as the mental, I kept holding on to the way it was rather than accepting the how it is now. So, frustration would take over all to often, until I finally got to that point of ‘it is what it is’.

Once I accept that she can't do what she used to, and make the necessary adjustments in her care, things go smoother, for everyone.

As I said to my husband, acceptance of change means reaching into another pocket of my ‘caregiver coat’ pulling out it's contents and seeing what is next.

The Tower of 'Babble'

Where has she gone
Is it far is it near
What has she heard
Voices loud, Voices clear
Makeup and ice
Water and cake
That girl over there
Oh that’s a mistake!
Words after words
Some struggle, some true
A lifetime of memories
Now are her enemies
Unassembled, Disarrayed
Not forming properly
Makes her dismayed
Who am I?
Even in the fog she knows
This can not break
The love that she shows.
(November, 2008)

You Put The Lime in The Coconut...

You put the lime in the coconut and drink it all up… this case it was grab a bottle of lime juice from the fridge and sniff it all up!

The stink in the house had become so unbearable to me.

Three days of serious diarrhea, a tub full of towels and clothing soaking in detergent and hot water, an assortment of cleaners and deodorizers in a desperate attempt to cover-up or eliminate the smells, all futile.

So, lime juice it was, aaahhhhh, did that smell great.

So, for a time I was in the tropics smelling the wonderful fragrance of the lime trees!

Statistics and Family Situations

I found out a few years ago, that I am a statistic, a daughter who carries the responsibility of taking care of the elderly parent. I am one of the 76 percent of family caregivers who are women, and receive no help from their male family members. In my case that would be referring to my brothers as my sisters are both gone. My husband helps me with mom. Without his help, mom would never have been able to stay here in her home, because I couldn’t do it alone.

As for my family, even if my sisters were both alive, I don’t know how much help they would have been, what kind of commitment and sacrifice they would have been willing to make. My oldest brother lives across the county, so he can’t help physically, but some financial assistance would be helpful. He doesn’t call or write mom either. The last time he visited her, he shook her hand…shook her hand! I couldn’t believe my eyes. But that shows there are issues he has not resolved concerning his relationship with mom, and it looks like he won’t be either. I have another brother who lives minutes away. He has not really helped out until recently, his wife has not helped at all. We have had communication this year which has opened up things more for us and I can call on him on occasion to sit for a couple hours if mom is in bed.

I don't believe he can really deal with how she has changed these past years, and I understand that, most sons can’t. Not that it has been easy for me either, but I do what I have to do and I deal with it. His help would be appreciated in doing some things on mom’s house, he has enough skills to help my husband, but he is very tied up with his family.

Not having help from my brother’s had been very frustrating and caused me to have to deal with a lot of anger for several years. I have done quite a bit of reading on the subject, trying to make sense of how sons or daughters can not help with their elderly parent or parents, and not even visit them. I did make peace with myself over the matter, and accepted who they are and why, and I was only hurting myself by being angry with them, and I didn't need that negativity going on inside me with everything else I dealt with.

I have had the privilege of being the one to take care of mom and show her honor in doing so during her last years. Boy that sounds like I did it all perfectly and enjoyed every minute doesn’t it? Not hardly. The story goes back to when I was a child, much younger then all the rest, the baby of the family. There were drama and power struggles going on which I didn’t find out till years later. This parent favored this child that parent favored that one or maybe they were told they would amount to nothing. Parent and child issues, that as adults should be able to be dealt with and put in the past where it belongs. As for me, being the youngest, it was all my fault, so for years I was the target of their resentments. Mom and dad always liked you best kind of thing! Did I ask to be a part of their drama, no. Sometimes I feel like they have abandoned me to this task to get even, isn’t that a grown-up thought?

Not many men can take on the task of caregiver for their parent. It is emotionally taxing to say the least. Then if there are past issues with the parent that makes it pretty impossible for them to deal be caring towards the elderly parent. Because my brother used to see mom so seldom, it was hard for him to deal with the changes he saw in her physically and mentally. I of course see the changes too, but because I deal with them on a daily basis, they aren’t as disturbing to me. The best thing for me has been to just stop having expectations of my brothers to help with mom, to be or do something they can’t, to take on any amount of responsibility concerning her care. It just makes it harder on me to continue have the hope that they will help out, and that interferes with my doing my best to take care of mom.

Most of my days are spent in the house. I don’t even get out to the laundromat anymore; my husband has taken on that task, as well as getting most of the groceries. I go occasionally to do the major shopping. So, I get out even less now then I use to. Church is something we alternate, one week me then next week him. There is nothing we can do together unless we hire a mommy sitter. On a limited income, we have to be selective at what we do since we have to pay extra for a sitter. That means no movies, no eating out and not taking a drive after church (which we seldom can go to as a couple), shopping and so on. When we first started hiring a sitter for mom, she was a bit uncertain and a little defiant, stating she didn’t need a sitter! But the sitter became a welcomed visitor for her, a companion, someone to make her smile and laugh. Not that we weren’t those things, but we were here 24/7, we were the rule makers, keepers of her house, the wardens! So friendly, smiling, different faces were a welcome change for her.

Mother! What Are You Doing?

I thought I had seen everything! One afternoon, as mom was heading to her room for a nap, she walked past my husband, who was sitting at his computer, stopped, bent down and blew at the back of his neck! He said to her, "Mother, what are you doing?!" She said, "I'm just blowing on your neck." "Have to have fun sometime! Too funny!

Who Am I? What's in a Name?

As mom has aged these past years and her memories have traveled back and forth through the decades, I have always said as long as she knows my name, knows who I am, it’s all ok. Then one summer afternoon, she couldn’t find the word. She knew that she knew the answer, but she just couldn’t locate it in her archives! Then I asked her, what’s my name? She named my oldest sister Joyce, who passed away in 1969. I said no, then she named my sister Lois, who had also passed away. Again I said no. She said I just can’t remember! I said that’s ok mom. I’m your daughter and my name is Donna. "Donna"! She said, as if to firmly plant it in the memory banks so as not to forget again!

Another day, my husband asked her who I was and she said with a smile, “That’s my baby!” What’s her name he asked? “Donna Mae!” she said very emphatically! She never uses my middle name, so that was kind of funny for us. Shoot, I’m happy for her just to remember my first name!

When I left her room the afternoon she couldn’t remember my name, it was one of those moments. A moment that only a parent caregiver can understand. The one who named you, cared for you as a child, helped you as a young adult, and now dependent on you for her care, has forgotten who you are. It was a moment, probably due to the fact she was tired, combined with her new meds, and it passed. But the effect it had on me was a bit longer lasting. It’s all still ok, but I know that each day that comes, could be one of those moments, that she knows that she knows me, but who are you?

So, what’s in a name? A lifetime.

When Mom Stops By

The days that mom stops by for a visit, she is treated like a guest. Served a breakfast of eggs, toast a banana and juice. Entertained by a variety of TV. Shows and maybe a good movie she watches more then she listens. Visuals are more important these days. At lunch time she has a light meal, never a big lunch. She often stays for supper, I prepare a special dinner just for her. A piece of cake or some ice cream rounds it all out. You sure get treated good here, she will sometime say.

At some point she will say, “Well, it’s about time I be getting back.” Back where, I will ask her. The answer will vary, well to the old house next door, (that’s where I lived and mom lived for many years, and the house burned in 2005. Or, it’s the other place, but she doesn’t know where it is. Or, the family will be coming to get me, or who will bring me home?

Obviously, mom did not come to visit. It is one of the days we dealt with in the life of mom. I have to remind her, mom, this is your home and you have lived here almost 20 years. The house next door, had a fire and we had to move in here with you and now we take care of you. She will shake her head, look down a bit, knowing she isn’t remembering some important things, and not understanding why. But sometimes she will say, “I’m just getting old and I forget some things.” I’ll say to her, who told you you were getting old? They are lying! We’d chuckle and off she’d go to get ready for bed. It was a nice days visit with the family.

She's a Wanderer, She's a Wanderer, She Roams Around, Around, Around

I can’t say how many times I would get up during the night or early morning hours, look over at mom’s house and see lights on, not just in her bedroom, but in the front room too. One time, my husband happened to be getting back late in the evening and saw her kitchen light on. He went to check on her and she was getting ready to eat breakfast ….at midnight.

Day and night, night and day, it all blended together for her most of the time. With no one living with her to schedule her days and nights, she did her own thing. When she woke up, if she decided it was time to get up, even if it was still dark out, she would get up, get dressed and go and have breakfast, or go sit in the front room for and read or watch TV for awhile.

Living next door, we checked on her in the morning and during the day as we could and then again in the evening. We did things for her that she could no longer do. But keeping her in bed at night, that we couldn’t do because we weren’t physically living in her house….yet. She also spent a lot of napping during the day, basically because no one was here and she would get lonely or bored, so of course that didn’t help her to sleep during the night either.

When we had the fire, the only thing we could do was to move in here with mom, or we would have been homeless. A new chapter in our lives, from a book I never thought I’d be writing. That was my grandma’s house. It was over 100 years old. Grandma raised her family in it, dad and mom raised the five of us in it, I raised my four sons in it, and all but one of my seven grandchildren had spent time in it. So, that which contained my lifetime of memories was now a blackened shell.

But we were well, and now faced with the job of making this little house of one, a house of three.
We had to sleep on the hide-a-bed in the front room, and many times during the night we would be awakened by the ‘wanderer’. She would wake up, go potty, and decide to get up and get dressed and come out of her room. She would turn on the kitchen light, or walk into the front room and sometimes turn on a light in there, where we were trying to sleep! She’d head for the bathroom, turn on another light! She wanted to get her teeth! Now all this would occur in any sequence and at any time of the night or early morning hours. Every night we were ‘chasing’ her back to bed at some point! Every night we would awaken to the dreaded metallic click! Click! Click! As her walker made it’s way across the kitchen floor, knowing that confrontation was soon to begin again. Sometimes, she would just walk into the kitchen, look at the clock, turn around and go back to her room and to bed, yay! However, that was few and far between. This was the nightly routine for about six months. Nightly sleep interruptions, yet those were the easy nights!
The weeks following when she broke her ankle, and had the black out episode were very taxing emotionally and physically. They had affected her mental and physical abilities greatly. She did recover well from the ankle break and walked with her walker again, but always had to have someone near by. Her mental acuity is what it is, and we deal with the fuzzy moments, repeating conversations or information as often as we have to.

She has been totally depended on us since that time, although she will state, I don’t need anyone to look after me! She still has a great sense of humor. She loves to watch The Chronicles of Narnia, Jumanji and she gets a good chuckle at the Three Stooges! She said to me one day, “We sure do have fun here don’t we?” and another time she told me I was more fun than a barrel of monkeys! That was almost 4 years ago, and the realities of care giving have long sense set in. But we will still try to keep humor going. You have to do that for everyone’s sake.

Shedding Water

I had no idea where mom ever got the phrase 'shedding water' from but she used it one night when she had to get up to, 'shed water'. That night was a doozy! She got up at 12, 1, 2 at 4:15, 6:15 and then at 7:45! I wanted to get her up for breakfast between 7 and 8, but I was so exhausted from all the trips to mom's room to help her during the night and early morning that I couldn't get myself up until almost 9. So, I got her up shortly after that. I explained the nights events to her to which she was appalled. She never remembered come morning how many times she had gotten up. But I sure did, in fact I kept a calendar of it for awhile.

These were the days following her broken ankle that I was doing everything to assist her even after she was mended and mobile again. I realized later on that it was the fear of her falling if I wasn't right there to help her move around.

The next night after she had gone to bed at 9, I did some research on the sleeping problems of the elderly, to see if there were changes we could make to help her change the habit of waking up and going to 'shed water'. I found a number of sites that gave me very good information. So, the next day we began to implement the necessary changes to hopefully help us all to get a restful night sleep!

Mom never had understood the importance of adequate consumption of water. Staying hydrated is important for everyone, but even more so for the elderly. We got serious about mother getting more to drink, and mom was a sipper so it wasn't easy to get the water down her! We would encourage her to take real drinks and guzzle that water down! Well, a guzzle is a bit extreme, but there were a few times she actually almost did just that!

As the weeks progressed, she would hold the liquid in her mouth rather then swallow it right away, then when she swallowed, she would breathe at the same time, causing her to cough. So, we would have to tell her over and over, swallow, don't hold it in you mouth. Can you believe I do the same thing?? Many times I will find myself taking a drink and holding it in my mouth! I can't believe I am doing that! Is it genetic or something?? Mom could take 4 to 6 hours to drink a large glass of water, and that is with us telling her repeatedly to drink. Her evening glass usually took her till bedtime to finish. Helloooo! That meant 'shedding water' during the night of course! Also, some of her meds have a diuretic in them, which also contributes to the problem. But to get up that many times in the night for any reason, is was just not normal! Ok! Plan B, all juice and water was to be drunk by supper time, and trips to 'shed water' done about every 2 hours prior to bedtime.

Another issue with mom, had been her bad sleep habits. She had slept when and if she wanted to for years, which established a real problem with night time sleeping in the later years. I set a regular bedtime about 9 for her, which is later then she was used to going to bed. I cut out her nap time and also changed her morning get up time. The day changes worked pretty good, but the nights continued to wreak havoc on us. So, plan C, up earlier in a.m., which would vary upon what the night before had been like. No naps during the day, which was a tough one for her to deal with. She actually did pretty well with the changes. She dozed off in the rocking chair instead of crawling back into bed for a nap. She still needed to get some kind of rest during the day, although there had been days where she actually did stay up from morning till bedtime, or later! The goal in all this was for her to get a decent nights rest, and me too!

Ok! That plan didn't work either! Keeping mom up all day just added to my daily stress, took away my afternoon quiet time, and didn't change her night pattern at all! For some reason she had to 'shed water' at night more then during the day. It was how her system was changing as she got older. There had been a few occasions where she slept 4 or 5 hours straight, and I do mean few! It was suggested that I try Melatonin or Beneadryl, which I did, and they both worked...once or twice...allowing her to sleep maybe 6 to 7 hours each time, and that was it. Then she was back to the usual patterns, and I just got more tired out!

So, let's see where was I at, oh yes, plan D... I went back to having her nap in the afternoon, she needed it and so did I! Summoning me to help her every 1 to 3 hours each night was exhausting, and something needed to change! But, I didn't know what else to do. Well, the whole thing ended up with 2 trips to the emergency room in August of 2006 with high blood pressure attacks. Lack of sleep, not enough exercise, too much stress...all contributors, had to make changes. I've been on medication since. Had to make changes.

Mom and Me, Remembering Special Times

As a child, going downtown with mom was a treat. We would catch the bus down the block for our house and in minutes, (though in my young person excitement it seemed much longer), arrive downtown. We would go to J. C. Penney's, maybe Zahn's and t hen almost always stop at Woolworth's and take a seat at their soda fountain for a strawberry sundae! It came in one of those tall shake glasses. I remember lots of times I couldn't finish that big sundae, but I sure gave it a try! Those berries were so good! To drink, I would have an orange soda, maybe it was a Crush. That was the only kind of soda I could handle, and even that was hard for me to drink, the carbonation would always burn my throat. Woolworth's, a memory intact and a store now long gone.

As a young adult, mom and I would run around town doing various things, that's after she finally got her license at 50 something! One of our favorite stops for lunch was the Big Boy restaurant. I don't recall my favorite food there, but i do know what my favorite desert was! Cheesecake! Love it! Had to have it every time we were there. It was the best I have ever had! Big Boy's, a memory intact, a restaurant long one from this city.

Some of the things we enjoyed doing was gong to rummage and craft fairs. Mom was a very crafty lady in her later years. She took up tole painting and painted many lovely items. She would shop the rummage sales for wood items that she could paint. She also took up quilting and mad some beautiful quilts, tackling some difficult and challenging designs not just patchwork types. And her sewing! She did mostly hand sewing, making the tiniest stitches that just boggled my mine, and they were even in size and spacing! Good eyesight and control of her hands! Skills that have long since been layed aside as the years clouded into her mind.

Collections were a big part of her life too, frog stuff, owl stuff, painting stuff, quilting stuff, recipes, rocks, shells and just plain ole stuff! In the latter years she liked angels and large porcelain angel dolls. Now, 'things' are insignificant to her. Even the basic needs for life have no value to her.

One of our favorite once a year stops was Long Grove, IL. This is and old fashioned little town whose homes and buildings were turned into all kinds of shops and restaurants. There is a wonderful confectionery, a bakery and our favorite place to stop, The Apple House. Here you could, at the right time of day, see them make apple cider. We always had to buy some fresh cider, especially from the sippy apples! Fresh baked apple treats were always available as well, and samples of their featured bakery item. Oh, and the herb shop! What an explosion to the senses! Even if we didn't buy a thing, we had to go in there and breathe deeply! And I can't forget the Irish store, where the best homemade Irish soda bread ever is sold! We always bought several to take home. There are antique shops, toy shops, craft shops and so on. It was always a fun place for us to go. We have even taken the kids and the husband, but the best times were when it was just mom and me!

We took a trip almost every summer, it was mom's way of escaping my grandma! We would go to Ohio, or Oregon to visit relatives. Two of my favorite memories are riding in the upper deck of the double deck train through the mountains, seeing the majestic Mount Hood rise out of the lake as we rounded the bend, going to the redwood forest in CA, and standing inside the huge redwood trees. We also rode the bus on many of our trips. On one of these trips, as we were about to get off, mom said to the man in front of us, "Could you please let my daughter off, she is about to get sick?" He didn't ....and I sick.....all over the back of his nice suit. She warned him right?

These are fond memories of times shared with mom, as for her they are but wisps, tucked away in a distant place in her mind.

Mom, The Can Do Kid

When mom would be on the couch, it would be quite a task for her to get up off of it. Pushing up with her arms, trying to straighten her legs while her butt is up in the air and her head is pointed downward...interesting picture that paints! It was a task to get everything in the proper position and propel herself forward and upward! Once she finally got hold of her walker, and came to a stand, she would look at us and say with an voice of victory, "I did it!" or "The old lady can still do it"!

There were times when she would try over and over again to get up. Attitude and determination would play major roles in her ability to be successful. If she gets wimpy and whiny and says, "I can't do it!" she won't be able to. Then we would tell her, "Yes you can do it, you tell yourself you can do it, tell yourself to get up and you will get up!" She would start telling herself, "Get up, get up!" Very shortly she would be up off the couch and on her way!

It was the I give up, I quit thinking that would stop her from getting up or doing the things that she could actually do. Even at her age at that time, of almost 93, positive self talk would help her to do it.

Mom had always been a stubborn, strong willed and determined person, so I wouldn't let her quit or wimp out on herself. Even though she looked frail, she was still strong. It was keeping that positive force at work in her mind that kept her able to do as much for herself as long as she could.

Brownish Stuff, Greenish Stuff

Brownish - greenish stuff, casserole types, mixed together types meats, particularly beef, but also some ground turkey dishes, chop suey dishes with beef and brown sauce, pasta dishes, rice dishes, fish, unless finely chopped, most legume dishes, ham, unless finely chopped....these were not a few of mom's favorite things!

It was a frustrating first year trying to find meals that she could or would eat. They had to have the right texture for her to chew. She practically liquified everything she ate! It would take her at least 2 hours to eat a meal. I'd tell her that her first bite would be digested before she got to her second bite!

Her meals had to have some visual appeal, colors were important. Taste and smell did not matter, she hadn't been able to do either for years. It was all about texture and color. She may have some sensation towards spices, as well as salt and sugar, but you can't give an elderly person spicy food, it will make them cough or choke.

I had spent hours trying to come up with simple meals for mom, that she could chew and that would be nutritious and colorful. I searched books and websites for recipes, created a few of my own as well. Nothing ever fit all the 'rules' but I did the best I could to feed her well.
I got to the place where instead of always trying to find different meals, that I would list the foods she could eat and make menus consisting of these foods, keeping things as simple as I could, yet still giving her good food.
I had tried asking a few 'famous' people who I thought could assist with my quest for recipes for mom, never any response. It really came down to this, I had all the knowledge I needed as to what to cook and how to cook it for mom, I was trying to make it harder then it really was!
Dogtrail.....most of the time when mom was up, she would sit on the couch. I would put an extra cushion under the spot where she sits, elevating her would make it easier for her to get up and down. Problem with this was that she would get an attitude and decide to get up and take off without her walker, holding onto furniture as she made her way to wherever she was headed. Her walker was usually close by, which would get her fired up and start charging for it, well ok, moving towards it in a slowly brisk manner! That was not a safe thing for her to do, so we would have to put her walker out of touch and out of visual range to keep her safe from herself!

Thursday, November 5, 2009

Fear Not

I wanted to expound a bit on being afraid of mom falling again, that I was doing everything for her. I had read an article, plus also realized that I was doing her no good by doing so much for her. To keep her strength up, to keep her dexterity, to keep her mind thinking, I needed to let her do as much as she possibly could for herself. So, I rearranged her room, giving her just enough area to move in from her bed to her potty. I always had a monitor on when she was in her room.

In the first weeks of caring for her, when she needed help all we would hear is, "Is anybody out there, is somebody out there?" all hours of the day and night! This would send me jumping and running to her assistance. By letting her have some of her independence back, it helped her feel she wasn't so old and helpless, and it gave me more rest and peace of mind...and peace in the house! She would get up when she needed to, maybe 1 to 3 times a night, and only called if she needed help, which wasn't that often. It helped my nights to be more restful and days as well.

This is all a learning process. There are many books to read on caregiving, and online articles as well, all have been a help to me, but each situation of parent care is different, and must be learned through trial and error. There have been many times that I thought I knew what to do, I had everything under control....wrong. I had to admit to myself that I didn't have it all under control and needed to make changes. Glad I had done that. She would get up as often as needed, dress and undress herself, and toilet herself, it had all greatly improved. She also began to sleep more at night then she had been. I think it had taken all those months of being on an actual schedule, that would allow her to actually get more sleep. So, after a year, I was still wearing that 'caregiver coat', and the pockets were stuffed with notes of 'did this wrong' or 'did this right'.

If I Don't Do It, Who Will? Transitioning From Daughter to Caregiver

In 2006, at 93 years of age, mom was fragile and strong, smart and at times fuzzy. She had a great sense of humor and a twinkle in her blue eyes. If she got mad, she could give you such a whop, if she wanted to...which she didn't.

We had been looking after mom for quite a few years already. Living next door made that pretty easy to do. Each year we had been taking on more and more of her responsibilities, laundry, shopping, bill paying and eventually preparing meals for her. She continued doing some simple cooking, fixing microwave meals, and of course she had to have a dish of frozen yogurt before bed, her fix! I started having meals on wheels delivered to her when the cooking became to dangerous for her to manage. Popping that meal in the mic was manageable for her for awhile yet.

Mom was still able to toilet herself yet, she had a potty in her room to use while in there, or she could use the regular bathroom if she was in the front room. Bathing, however was being eliminated more and more, so I needed to step in and assist with that, as well as doing her nails and hair. Not really a problem as I was just next door. You do what you need to do.

On November 17, 2005, our home had a fire. We moved in with mom that day, thank God we had a place to go. We slept in the front room on the hide-a-bed. Since we were living with mom, we could tend to her even better. She was still able to look after herself during the day while we were working. But that would not continue very much longer.

Mom had been living alone for many years and as a result had established very bad habits and routines. As she got older, her once very routine day turned into a do whatever, whenever or not at all day! That included sleeping, eating, bathing and so on. She would get up at all hours of the night, sometimes getting dressed and having breakfast at midnight! Well, needless to say we lost a lot of sleep for awhile until we could get her into a good routine, for all of our sakes! I got her on a schedule of when to get up, eat, take a nap and go to bed. She still would rebel against the routine, "I will go to bed when I want to!" she would protest. Having a schedule and sticking to it as best as we could was not only necessary for us but also beneficial for her, even though she didn't think so!

We made sure mom had got a good breakfast, at breakfast time, not midnight! I had discovered she was starting to make mistakes at taking her medicines to forgetting them, so I made sure she was taking them. One of the big sources of contention between her and us had been our enforcing of her drinking fluids, especially water! This was something she had fallen far short of all her life, so she was not very willing to be cooperative about it now at this stage of life! She would usually take 2 to 3 hours just to eat her breakfast, so most of the time she wouldn't have lunch, or maybe just something light. I would fix supper for the 3 of us, which would often be a challenge. Mom got to the point where she could not chew many foods, and she hadn't been able to smell or taste for years. So the challenge each day became finding which foods she could chew, foods that were colorful, had the right texture for her and of course nutritious. I usually ended up making our dinner and her dinner separately.

Since we were living here with mom, it was easier to help her with her personal care needs. I'd run her bath for her, put her special seat in the tub, and assist her as she needed. I would then let her have her privacy to get herself washed, dried and dressed for bed. One particular bath night, I had to come to the realization that she could not take baths this way anymore. It was getting to difficult for her, and she was washing maybe two body parts! So, the next bath night, I had her sit on the end of the seat and do a sponge bath using the sink. I was still trying to allow her some independence and privacy, I told myself. Truth is, if water never touched her body again, she would be just fine with that! It was all too much work for her. The reality of it all was, I was postponing or ignoring the inevitable fact...I needed to give her her baths, start to finish. I had been doing her hair at the kitchen sink, and that had worked OK, but it too would have to change. But this bath thing, I knew she was barely washing at all, but what do I do? I knew what I had to do, I just had a hard time coming to grips with it...moving into the full time role of caregiver. If I don't do it, who will?

On Easter of 2006, mom had fallen and broken her ankle. That same week she passed out from a TIA. For the non-medical person, which includes me, a TIA is a little clot that makes a nuisance of itself then disappears, my medical description. She was admitted for observation and given new meds, one to slow her heart rate down and one to thin her blood, as well as changing her blood pressure meds. The side effects of these new meds put her in a stupor the likes of which I had never seen. Being in a strange place, and not having someone around her all the time, not being handled in a way that made her feel secure, combined with the side effects, I really thought I was losing her at that point.

The day I was to bring her home, I took charge, got her dressed gave her instructions as to how to move while I was transferring her, and gave her the security she had not gotten since she was in the hospital. She responded so well with understanding and strength, I was just hollering! I had my mom back! I couldn't wait to get her home and give her the care I knew she needed.

Her broken ankle would require a cast on it, which went all the way to her knee! The first time I moved her I thought she had gained 50 pounds! But I quickly got used to the added weight. She coped remarkably well with the cast on! When she was in bed she would just flip that leg back and forth like nothing, there was no pain that's why! It had actually been over two weeks before they discovered that mom's ankle was broken. When she was in the ER, xrays were taken, and no one saw the break! A therapist had come to work with mom, and she was concerned that the foot was still hurting so much, she really thought there was a fracture. She arranged an appointment, new xrays were taken, oh look, a fracture!! We had been told it was a sprain and all those days she was in pain, it was fractured! So, a lovely blue cast was put on.

She was in the cast for about a month, and then another month of getting used to putting her weight on her foot and ankle. At the end of that month, I stood her up and asked her to put some weight on her foot, and asked her how it felt. She said it felt like she wanted to walk! I said let's go out to the front room! She walked through the whole house as strong as can be! I told her she was off and running! She said, "Well,I'm off, but I'm not running anywhere!"

During the weeks that she was in a cast, then rehab, she needed help with getting dressed, getting on and off the bed, the potty, getting in and out of a wheel chair and on and off the couch. I'd put my arms around her in a big bear hug, and she would do the same to me. Then I would pivot her to whatever spot she was going to. One day as I was hugging her up off the bed, I told her we have never hugged this much in all our lives, we're making up for lost time! She laughed and agreed with me!

I continued to move mom form place to place even after she was able to stand and walk herself. I had become fearful that if I didn't help her, she may fall and get hurt again. But, with increasing frequency, she was getting up and moving about by herself, much to my distress! But the day I realized she needed to get back to doing more for herself, I let her have at it, but kept an eye on her, and assisted when needed.

I was going to sum this up, but in care giving, there is no summing up. It is a job that continues 36 hours a day, day after day, month after month and so on. However long you must where the 'caregiver coat'.

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