If I knew then what I know now ...

Okay so I had an email today from someone thinking that my last blog was discouraging nursing homes and assisted living places. That could not be farther from the truth and anyone that says anything to me about having Mom live here will also say I say that as much as I think having a parent with you is great, I do not question the decision to use a facility. I believe we all do the best we can based on the information and resources we have at the time and if you have to work or want to have a career, that is what you do. I do not so I choose this path but if this situation became more than I could handle Mom would go to a NH. With that said, this blog is my story, my journey, it is not a "how to" or a "you should", etc.

In the Fall of 2010 Mom was in the nursing home in Matador and my brother was moving to take a job. I had been staying in Roaring Springs to be close to Mom but it was not feasible anymore. That would leave Mom out there with none of us close by and I struggled with that. It was about that time there was a program about "The Disposable Generation" on TV and at that point Louis and I knew we had to try to move Mom to a place closer to us so that I could visit regularly ... I mean it was the right thing to do and I was a dutiful daughter.

So we moved her. I sure did not like doing that visiting thing much, it was boring, I had a million other things to do, she did not know me, she seemed to not care that I was there, and really maybe it seemed like kind of a waste of time. But as time went on I began to realize how my brother Julian was right. When she stayed with him in Roaring Springs he so wanted people to make more of an effort to come see Mom. He would say that it does not seem like it when you only see her for an hour or two once in a while, but that there is so much more to Mom than we gave her credit for. I am not sure how I really felt about his analysis of Mom but I did know that she did not seem to know me when I went to RS, although she did seem glad to see me, she did not talk much. I never felt like it mattered that I was there and Julian would say, "No, she likes having company". I just thought he was bound and determined to make her something she was not.

So now that Mom and I have gotten so close, I ache some for Julian because now I know how he must have felt, how frustrating it was to try to make people believe more in Mom ... to believe that it is not about us but about our Mom. Yes sometimes it is uncomfortable and it may not fit into our schedules but really ... who is this about ... It is about Mom. And I guarantee you my Mom has more going on behind those eyes than you may think. Julian was right!

So in my last blog, the first paragraph represents me before I understood the elderly, and more importantly my Mom, and the second paragraph is me becoming more enlightened to the elderly, and more importantly my Mom. If you take anything away from it, learn from it, have a light bulb moment, that is great but if not that is okay, it is my journey so most certainly do not be offended.

The disposable generation?

It is a disposable era - disposable diapers, disposable bottles, disposable cameras, even disposable cell phones ... hmmmm ... disposable family members? Think again. It's already here. The elderly ... I mean the elderly person has nothing more to offer, right?

I don't look at them as disposable. I view them as human souls, ready and willing to make a difference given the chance. Love them. It seems simple enough, but it becomes more of a doing when they cannot really communicate and when they do it is gibberish. That's when love has to kick in. Be ready to give them the attention they need, make a conscious desire to love your people unconditionally. They may not be able to exactly place who you are but they do know they know you, they know that for one reason or another your presence brings a good energy to them, and it feels good to them to know you made it important to make time for them. At this time in their lives this is ALL they have to live for ... they live for that energy.

(Derived in part from an article by William J. Brown)

On Disciplining Kids according to Mom

My Mom maintained a philosophy when raising her kids and she passed it on to me when I had kids. At first I thought there is no way that it can apply to every situation but really it does.

"Unless it is morally wrong or will do physical harm never say No" - Mom

You see, if you think about it ... how often do you say No because that is the first thing that comes to your mind? It is lazy parenting because you do not want to put any thought into what your child is asking/doing or maybe it is just not convenient for you. My Mom felt that if you say No too often for no good reason your kids will not respect you, they will stop listening. You probably start sounding like Charlie Brown's teacher ... WAH WAH WAH WAH WAH!

You do not want your kids to stop listening to you! I have told this story in an earlier blog but it is one of my favorites.

Mom tells of how she was just a very little girl and she was walking the path from the house to the barn. Her Mother looked out the kitchen window and saw a rattlesnake right in front of her in the path. Grandmother yelled, "Grace Laverne Tilson you stop right where you are!" Because my Grandmother was not the type to rattle off "No" at the drop of a hat without good reason my Mother respected her and knew she always had her best interests at heart ... so she stopped dead in her tracks She did not move until Granddaddy came and killed the snake. I am willing to bet there are many young kids these days that would have gotten bit by that snake.

What a rebel I am!

So we tried going along with the hospice nurse and Mom stayed in bed from Friday PM until this morning and it was the most depressing thing. I do not think Mom liked it either. It was unbelievable the battle that was going on inside of me, it consumed me all day Saturday and so all I did was lay around either on the couch or in the bed next to Mom. Every time I went in her room I kept searching her eyes for something that would tell me that she was relieved that we were not making her get up and that she was very content just laying there in her room. It was not there ... all I saw in her eyes, that seemed to have tears in them, was confusion. I do not think she understood why everything changed. She seemed so sad. So this morning I made an executive decision ... I believe if Mom does not want to get up she will tell me, so Louis and I came up with a new schedule so that we are not shuffling her as much but she ends up being with us the same amount of time.

I get her up around noon, do the morning routine of fixing her hair, washing her face and brushing her teeth, if she will open her mouth! I think she is afraid the toothpaste is a form of nourishment I am trying to trick her into eating! ; ) Then we go to the kitchen and I mix up her pudding concoction of medicine, hold it up to her mouth a few times, trying to get her to take it, and it ends up in the garbage disposal. Then I fix her cereal with banana, hold a bite up to her mouth and discuss the value of food to convince her to unclench her teeth, and then it ends up in the garbage disposal. Then I fix her something to drink and maaaaaybe she will drink it or maybe I will put it in the sink too. It may all seem like a waste of time but I do not think it is and I think she likes the routine.

Then Mom watches Mass. After that Louis puts her in the recliner and there she sits until the evening. She seems so happy and content when she is there because she is where the action is. She does sleep a lot but I still think she is engaged in what we are doing and when we are talking. When I asked her earlier if she was ready to go get ready for bed she said "No" so I let her hang out longer until she agreed she was ready.

I believe that when Mom is ready to go and God is ready for her she will go but I just cannot see letting her lay in that bed waiting to die. And so unless she takes a drastic turn for the worse she will be up with us during the day just hanging out. I cannot bear the thought of her laying in that bed while we are having Holiday celebrations, hopefully she will stay healthy enough that we can still get her up when that time comes. Today was a very happy day!!

Here is a picture of Mom and Megan. And a picture of Mom watching the Cowboys play today ... she tunes in to the sports!

Things Mom taught me ...

My brother Ray made this card and sent it to me. It is a picture of my Mom with one of her philosophies. It has probably been my number one survival tactic since junior high when I went to her about a bully of sorts in my class and she gave me these words of wisdom. It worked for me then and it has worked for me many times since! I have learned so many things like this from my Mom. I will post them as I think of them!

And I love that my brother summed it up with the word Serenity because we should all hope and strive to be in a state of serenity but to be there you cannot let other people get to you.

Looking back ...

My beautiful Mom ...

The hospice nurse was here today to look at Mom's hand. Over her knuckles it was swollen up like a balloon, scary looking! Brenda is Mom's nurse and she is also the Owner/Administrator of the Hospice service I use. She is wonderful ... she drove probably 2 hrs out of her way to see Mom. But not just for that reason, she is just super nice and caring and knowledgeable! She feels like we probably need to start limiting the amount of time we are getting Mom in and out of bed. Since Mom is so limp and not willing to help when we try to move her she said not only is that her trying to tell us to let her be but it raises the risk of her or us getting hurt. Plus since Mom just sleeps in the recliner now and does not interact it is probably more comfortable for her to stay in her world (her room).

She also said the swelling is normal at this time due to the circulation starting to slow down and so the swelling will pop up in different places at different times. She sees all of these "signs" that say Mom is declining but I am definitely in a state of denial if she is. I see what Brenda sees but if I get one smile or one answer to a question from Mom I convince myself she is on the rebound.

Brenda really bragged on the environment I have created for her in her room ... she said she just wished all of her patients could have it so nice. That made me feel good. I cannot imagine doing it any other way but Brenda said what I do is way above and beyond what she sees for other patients. She said no matter what happens I should never doubt for a minute that I have done everything and more for Mom and the rest is just part of the natural process. I am sure the memory of what Brenda and the other nurses and aides tell me will be nice to refer back to if I ever find myself doing the woulda, coulda, shoulda!

Mom and Laverne

Mom and Ray

Mom and I

Mom, Julian, Bunni (the baby) and I

Mom, Dad and Lamar

Mom, Dad and Steve (with Stevie Lynn)

She is so funny ...

Mom not eating much at all, drinking, or taking her medicine, is obviously not taking the spunk out of her. I was getting her ready for bed and I had an unusual situation that I guess did not fit into the time she has allotted me for that because when it went on and on she said "Okay, Okay, Okay!" And then when I was adjusting her pj's I explained that I was trying to make sure she was comfortable. I said, "I have to make sure you are comfortable because you are the Queen in this house huh?" And she said "Yea" with a tone that would make you think of a teenager saying "DUH"! She is such a joy to have here! I cherish this time with her so much.

I went shopping for warmer clothes for her today and when I told her I was going to do that she lit up like a light bulb and said "Yeah, Okay!" I mean, HELLO, when you are a fashion maven and always have been like Mom, something as silly as being a little forgetful is not going to change that!!

The hardest stage ...

They say that the hardest time for a caregiver is when their person will not eat or drink. When I learned that while researching the process I thought unemotionally, "Come on people (the ones that say it is a hard stage) it is part of the process, stop being so emotional, deal with it, it will be fine!"

Then today I was walking to the garage, thinking about how Mom will not eat or drink and I felt so overwhelmed, "What if this is not part of the process, what if I am doing something wrong, what if she does not like my cooking, what if she is miserable, and I am calmly attributing it to the dreaded "process"." And then immediately I realized I am the "people" I mentioned above. I hate it when my Mom's voice rings in my ear, "Don't criticize someone if you have not walked a mile in their moccasins."

So yes this is a very difficult stage, most difficult I will now have to concur because this is the only stage where I am not able to fix it, work through it knowing I am doing my best, or make it better. I am supposed to be taking care of her! Isn't food and water a pretty important thing and I cannot even do that! All I can do is sit by and watch ... this stage can definitely bring about feelings of sadness that I have never had before.

I keep asking her if she is hungry, usually she says nothing, sometimes she says No, but she never says Yes.

And there is the sleep ... yes part of the process! I still have her on her same schedule, getting her up throughout the day, but all she does is sleep in her wheelchair or her recliner. I do ask her if she wants to get up and she usually says yes but if she says no I let her stay in bed longer. I do not let her stay long though because she will get too stiff. And then there is the issue of the bedsores! No eating, no protein, no healing, so more risk of bedsores. So can't let her lay around too much!! "No acting like a teenager Mom, get up, get up!" ;)

Last there is the detachment, she is very withdrawn ... hospice says they are letting go, doing business with God, they cannot focus on where they are going until they start letting go of what they are leaving behind. So I don't know what to think, I mean who really knows, right?