Wednesday, June 29

I believe we have little time left

I was at my moms tonight until pretty late.  She was very restless around 12 until 12:45..  She finally fell asleep and I left around 1:20.  Boy what a horrible process it is to see someone that you love slowly pass away.  My mom is still aware of everything and still with us mentally sortof.  She told me tonight how much she loved me and when I told her she was my best friend, she smiled and asked "really?"  It made her day.  I know that it is only a matter of days that I have left with my mother and I did not expect how hard it would be for me.  The realization that I won't have her to snuggle with or to hold really bothers me.  Even hearing her calling my name or saying I love you.  I really do not want to lose my mother.  I know that she is suffering and will be better off but she is not ready to go and I am not ready to let her go.  She is scared that she is dying and she told me she does not want to go.  She wants to be there for her grandchildren and I think she feels robbed sometimes of the time she had with the children.  I want to scream so loud and throw a tantrum because I want my children to know their grandmother. I have fallen in love with this new mother who at first was such a stranger.  She replaced my mother that I had known all my life and as strange as it is to say, I love her more as she is now.  She is so loving and so calm, humorous and silly.  I feel so loved by her and feel that she is proud of me, something I tried to obtain my entire life.  I do not want to lose her and I see her slipping farther and farther away.  I am thankful that I am a believer in Christ and know that one day I will see her again but it is the unknown that is so hard.  No one knows how heaven will be and I do not know the type of relationship that we will have. I do not know how people that do not believe in eternal life can deal with the finality of death.  I also feel for those that lost contact with my mother during this disease.  They missed out on such a wonderful woman.  She was so different than the woman she was. Granted early on she was quite a pill, but these last few months, she is amazing.  I cannot believe she is only 58 and her body has wasted away to make her look like she is 80. My gorgeous mother has become a corpse, an emaciated living corpse that trembles and shakes constantly.  I spend my days with a wall so strong that I can separate myself from the reality of her death.  I can speak of her dying without shedding a tear and can spend time with her without breaking down.  It is here as I type that the tears fall freely, no one to see my stained face, no one struggling with what to say to me to comfort me.  There really is nothing you can say that will comfort someone who is faced with a dying loved one. I am sorry makes no sense-why do people apologize for something that is not their fault. I do appreciate those that are praying because that is about all that can help.  Maybe it is the realist in me, but I actually appreciate those that do not tippy toe around it and speak frank about her death. Those that want to know what is happening to her and not afraid to offend me.  I do not need to be comforted, in fact that makes me feel more awkward.  She is dying and there is nothing I can do but watch and love her.  Her body has started the dying process, of that we are sure.  She goes days without any bowel movement, days without urine, days without eating.  She now weighs 89lbs and if you see her legs, they look so thin and frail.  Her feet are slightly cold to the touch and have begun discoloring.  Her skin is flaking around her nose and forehead.  Her blood pressure sometimes drops pretty low 95/53 with a heart rate of 115.  Sometimes she is completely normal with a 128/73 and 89 pulse.  Her temp is 97-98.  She is agitated and fidgits more often.  Her body trembles continuously with sudden violent tremors.  Her feet never stop shaking.  Her eyes are glassy and often she stares vacantly.  She sees people that she is afraid of and other hallucinations.  She states that something is wrong with her and feels like she is dying. Her body is pretty rigid and her urine when she does go is brown  like ice tea.  The most tell tale sign that she is dying is her smell.  I do not know if anyone has ever experienced being able to smell illness or death.  For some reason, i always know when my children are going to be sick because they start to have this scent.  It smells like a hospital.  I do not know if anyone else understands the hospital smell but it is the smell of an iv line or iv fluids.  Very sterile very clean smell.  It is not unpleasant, but rather almost a pure smell.  Well for awhile my mom was smelling very bad-bad body odor, bad breath.  Today was the first day that she did not smell bad.  Her breath had the medicine smell of a hospital an odor of death.  I noticed the scent on Saturday but it was very light.  Today the scent oozed from her.  I also notice that her dog comes up to her a lot more and stays with her more often.  I hate that the signs of her eminent death are here-I really do know that I am not ready for this and am going to have a difficult time with it.  She has been our life for so many years that I really do not know what I will do with myself.  I know I am going to have to get out of this town for a few weeks or even a month.  I do not want to see her house, her stuff, or antyhing else to make me think about it until I have had time to process this.  Keep us inyour prayers and hoepfully Iwill regain my stoic attitude because it is a lot easier to deal with it that way.  Thanks for listening to my vent.  Also a lot of people have asked how they can help me.  Honestly, the best way is to cook somethign or come help me clean.  I have not cooked a decent meal in over two weeks because I would rather spend my time with my mother.  So if you want to help, cook for us or bring meal cards-that is the best gift you can give.  Are you not proud of me, I am actually letting people help me out :)  Thanks again!!!

Friday, June 24

Kidney Failure

So since my mother's and my birthday, things have taken a downward spiral  with us guessing and trying to sort out our emotions, problems, health issues.  We have become medical detectives trying to figure out what is wrong with my mother since the family doctor has obviously washed his hands of her.  She started having trouble walking on Wednesday morning and trouble communicating to us.  She would see things that were not there and was extremely nervous.  She stopped eating food on Friday  and did not resume eating until Monday night.  Even then, she only ate a few bits of food.  She barely would drink and became so out of it as you can see by the videos that my brother and I posted on youtube.  She only would only go to the bathroom once or twice a day and would have such little output.  She seemed to be getting better or was more clear on Tuesday past but then slipped again.  She can no longer walk, is having difficulty sleeping at night, and does not want to eat still. She is also very agitated and seeing things.  The final thing that freaked all of us out is the other night she started shaking.  I mean the entire body shaking as though a great chill was traveling to all her extremities and there was no way to warm them.  As of today, she has not had any urine output since yesterday at 3pm and has had very little to eat or drink.  I started extensive searching and here is what I found.  Unfortunately, it meets all of her symptoms and in her condition, it seems pointless to even try to treat this.  My mom on dialysis? Yeah right she would never agree to that. I just cannot fathom one to two weeks until her death.  I really am not as ready as I thought...

Loss of kidney function leads to serious illness, affecting many aspects of physical well-being. The kidneys filter by-products of body chemistry and adjust the amount of liquid in the bloodstream. Many people have progressively diminished kidney (sometimes called "renal") function as they grow old, but usually this slow decline can be managed with diet and drugs. When the kidneys fail completely, you cannot live for long unless you have dialysis or a kidney transplant. A transplant that works relieves the person of kidney failure. However, transplants are not always available, appropriate, or successful. Dialysis is the name for the process of artificially replacing the main functions of the kidneys. Hemodialysis refers to filtering the blood through a machine; peritoneal dialysis refers to using fluid exchanges through the abdomen. Either procedure can be used to sustain life for years, but they do burden you and your caregiver, and each procedure has complications.

Sometimes a person whose kidneys no longer work decides not to continue or even not to start dialysis and to let death come from kidney (renal) failure. If you are considering this option, you need to know what is likely to happen. Usually, dying from kidney failure is fairly gentle and most symptoms can be suppressed. The characteristics of your renal failure and your other medical problems help to predict which symptoms may arise.

As the by-products of the body's chemistry accumulate in renal failure, these substances cause an array of symptoms. You almost always lose energy and become sleepy and lethargic, but you may find it hard to sleep at night. Over time, the typical patient just slips into deeper and deeper sleep and gradually loses consciousness completely. However, early on, mild confusion and disorientation are common, and usually require only reassurance as treatment. Sometimes, though, upsetting hallucinations or agitation arise. These can be treated very quickly with tranquilizers and anti-anxiety drugs. Certain minerals in the blood-stream can also accumulate and cause twitching of muscles, tremors and shakes, and even seizures. The tremors are usually of no importance to your comfort, but their onset can signal a need to prevent seizures. Medications to prevent or treat seizures are usually quite effective. Some patients develop mild or more severe itching before they become too sleepy to notice. This can be treated with creams, massage, erythropoietin, and antihistamines. Sometimes a fine white powdery substance covers the skin, but it is not the cause of itching and is of no importance. Appetite decreases very early, again to no one's surprise. The accumulation of acids in the bloodstream causes rapid, shallow breathing; this is not an uncomfortable feeling, and the rapid breathing is not changed by oxygen.

Many people with kidney failure pass very little or no urine. If you pass little urine, without dialysis you have to be careful to avoid problems with salt and water overload. Restricting your fluid intake to less than one quart of liquid a day will keep you from having much trouble. Fluid overload results in swelling of the body (edema), particularly of the legs and the abdomen. The excess fluid can also cause congestion of the lungs and the heart, leading to rapid breathing and shortness of breath. Sitting upright helps relieve the breathing difficulties, at least for a while, as it shifts the fluid away from the chest and toward the legs; it may be impossible for persons in this condition to lie flat. Oxygen and morphine may also ease any feelings of struggling to breathe.

It is important to know that persons with some urine output have lived surprisingly long times after stopping dialysis - sometimes for months. People with no urine output are likely to die within a week or two. If this is your choice, or the choice of someone you love, try to be sure that you have a doctor and nurse who are familiar with the problems that might arise. Make sure that medications to treat those problems are readily at hand, especially if you are in a nursing home or at home. In such situations, having a knowledgeable and experienced hospice team involved is often worth exploring, as they will make it their business to get you any urgently needed medications. You probably will have a kidney specialist by this point, and that doctor may be a real help both in making decisions and in keeping you comfortable. So, on the whole, when you have to die, allowing kidney failure to take its course is not generally a hard way to go. In years past, before dialysis, kidney failure had a reputation of being a gentle death.

Tuesday, June 21

A bit better

So today mom ate 6 bites of food, peed 2 times, and finally had a bowel movement.  She still can barely walk and as you can see from this video, is looking pretty bad.  Sheis still aware of everythingthough and that is both the blessing and curse that I continue to write about.  She cannot see well at all now and I am left wondering whether it is because she cannot see or cannot register.  Iwill blog a bit more tomorrow or Wednesday.  Not feeling up to it at the moment.  Night

Monday, June 20

What to do

This is from today

Update for everyone:  My mom has not eaten for three days, has not had a bowel movement in days, her urine is the color of tea and she only is going two or three times a day, she does not want to drink much and we have to try pretty hard to get her to drink, she is able to shuffle still but is stooped over, she occasionally can sit on her own, is very disoriented and does not know how to navigate her own house.  Something happened on our birthday that changed her. On Tuesday night she was still there slightly and on Friday she was a completely different person.  Kevin noticed the change on Wednesday so we realized it was after I left on Tuesday night.  I started to observe her the last few days and am making an emergency visit to her doctors tomorrow.  Dad, Kevin , and I are kinda shook up and not sure what to do.  This came so quickly that we are not ready.  There are so many questions, like do we force water and food on her, get all the testing done to see if it was a mini stroke or UTI or other issues, do we give her a suppository to help with the bowel movements, do we get home health...So many questions.  selfishly I want to but I think she is better off to just let her body take over and just hold her hand through out.  Tomorrow we will have some answers!!!

For friends and family:  My mother does not want anyone to call her if you have notbeen calling regularly.  You can call me, Kevin, or Dad.  ...If it changes and she wants to hear from you, we will let you know. 

Friday, June 17

My mom is dying I believe

What to say and how to say it...My heart has been torn, twisted, and completely unprepared for what I encountered tonight.  To see what happened to my mother in two nights shocked me into total disbelief and slight depression.  Normally I am mentally and emotionally prepared for my nights with my mother but this time, I was blindsided.  My eyes are moist and cannot stop tearing up.  I cannot even look over at my mom with water dripping down my face.  She is a living corpse a zombie .  Her face is so hallow but the worse part is the zombie shuffle, her face tilted sideways, her back hunched over, and a slow shuffle.  Except that the slow shuffle only allows her to walk three or four feet until her entire body is shaking and she starts bending more toward the ground and almost falls over.  Here is what : My mom slumped in a chair barely able to support herself in the chair.  She could not speak but made incoherent mumbles.  she trues to tel me about her falling out of her bed and how scared she is. she tells me she will never go in there because "they wanted to kill her"We try to figure out a solution too this dilemma and she says she wants Dad's bed.  I decide to show her the room and let her try out the bed.  Imagine my surprise to figure out she can not get up out of the chair.  Not only that but even when I lift her up, she shakes and looks like she is on a tight rope.  She starts to slip like she is falling and I place her back in the chair.  She tries to walk again and cannot.  She has completely forgotten what to do.  So Dad leaves to go get a wheel chair.  During this time, I talk her into moving the king bed from the guest bed to her room.  She agrees and I fly between the rooms.  I can now boast that I can break down a queen bed, break down a king bed, move king bed into one room, and set it up in less than 7 minutes.  Give me 11 and I could have set up the other room.  It was only when dad came home that we were able to put the bed in there which took the 4 minutes.  Well bed was now in place but the question was how to get mom to the room.  I somehow talked her into letting me carry her to her room.  It was not as easy as I thought it would be.  She was dead weight and it was kinda hard not bumping into stuff.  I made it to her room and placed her in the new bed.  She loved it.  I actually got a smile and then she asks me to call my brother to tell hi m that she let me carry her.  She was so proud of herself.  Dad came how just when mom decided to she had to use the restroom.  We try to get her up and it takes over 35 minutes to get her in the room and on the toilet.  We actually had to force her on there.  She finally peed.   which may have been the firs time she peed all day.  she made it back to the bed and she let me pick her up to get in the bed.  Before that she tried to sit on the bed and almost fell.  I had to catch her as she folded in half.  So here is the changes in my mom.  Her head is tilted sideways with her hair in her face.  She cannot see where she is walking-bumping into the baseboards, corners, walls in the few steps she takes.  Her back is hunched over with her right arm completely stuck to her side.  She tenderly steps one foot at a time testing the ground beneath her and scared to trust in her senses.  She cannot follow sound.  She keeps her eyes shut most of the time.  She does not want to eat tonight, she barely wants to drink (but thankfully she let me give her some juice).  She stayed in the bed most of the night-I brought everything to her.  At one point, she was extremely interested in conversation.  She told me she is dying and everything is hard.  She also said she does not want to die.  I will admit that I broke down quite  a few times tonight-she is there. She is completely aware and I hate that.  Watch the videos and you can see how far out there she seems and yet when we decided on a movie (the holiday) I could not find it.  All of a sudden she says oh wait Kevin and I watched it today.  There it was in the dvd player.  Someone please explain to me how she remembers that and yet she looks like she does in the videos.  After seeing the change in her from two days until now, I will be surprised if she is not totally bedridden in less than a month.I also would not be surprised if she is getting ready to pass.  She is not eating, not peeing, not having bowel movements and is slipping away so quickly.  As much as a blessing that this would be for her, I question whether I am ready for this.  I think about her death all the time and often pray that God would take her.  But seeing her tonight made me realize that it is sooner than later that her presence will no longer be there and I don't want that.  I feel so torn between having my mother and letting her go.  Even though she is such an empty shell, she is still my mom and I feel so blessed just to hold her in my arms and tousle her hair. 

Monday, June 13

Happy Birthday

So tomorrow is officially my mother's and my birthday and something must be seriously wrong with me. Why do I truly dislike my birthday. It is not the fact that I age because I really could care less if I get older. I think it is the attention you get and the need to continuously say thank you. I hate the gifts and the cards. I even find it slightly busy when the phone constantly rings from all the well wishers. Especially since the only response you can say is oh Thank you for calling me. Maybe I hate it because it was always a day I shared with my mom which meant that I had to either spend it with mom and do what she wanted to do, or have a miserable birthday. When I was little, my mom would throw birthday parties and do amazing things don't get me wrong. But after my 7th grade birthday, it basically became a mother daughter day which most teens absolutely hate. With the exception of my 21st bday and last year, I had spent every one with my mother. Kinda crazy. So it is fitting that tomorrow is a Tuesday night and I will once again spend my birthday with my mother. We have decided to tell mom that it is our day and see if she can enjoy one last bday because I am pretty sure that is what she has left. I uploaded a clip on youtube from when mackenzie was around 18 months roughly 3 1/2 years ago. (I finally entered the tech world of youtube videos-my user name is peevzy)Look at the laughter in her eyes and the smiling body language. Mackenzie was her light, she shining joy. My mom could be in the worst mood ever and when Kenzie came around, she became an entirely different woman. Even to this day, Kenzie has that effect (usually only when Mackenzie is being sweet though). Isn't it amazing how different she is in just a few short years. It is hard to believe that she was still functioning so well. In fact I believe it was mostly her crazy behaviors, fine motor, and grammar that were sliding downhill.

On a side note, if any of you have not had the pleasure of seeing memory people on facebook, please take the time to check them out. They are a closed group at the moment but once you are accepted, the world of Alzheimer's comes at you full force. You are surrounded by wonderful people that are experiencing much of the same things you do during the course of the Alzheimer's deterioration on you or your loved one. They are sympathetic, considerate, and ready to offer some advice or support.

Wednesday, June 8

In just a week

Amazing how quickly my mom can drop in just a few days. It seems like this week there has been such a difference in her abilities.  Just when I think there is really nothing she can do, I realize just how much she was able to do and how little she can do now.  Amazingly enough, she is still pranking us, still reminding us of things, and still able to tell us how she is feeling.  For instance, on the First of June my little girl turned five years old.  Mom wanted to see her on her birthday so after school, I brought Kenzie and Connor over.  About thirty minutes after the cake,my mother looks at me and says "when the when we go you know the car to bllalalblblb (blow) when sing" Inside I am thinking ummm we already did the cake and we did it here.  I tell mom that we are not going to my house in the car and that we just blew out the candles.  She gets slightly upset and says it again.  After my expression gets even more quizzical, she starts laughing and says got you.  She knew we did the cake and just wanted to mess with me.  After that day, she became zombie mom with no expression, total confusion, and now is afraid of the people that come in her room that she knows are really not there.  Tonight, she told me she is afraid of the hard wood floor because of the lines and maybe that is where they come from.  She hates her big blanket because she gets trapped in it and noticed that the garbage can was turned around the other way(which freaked her out and took me about four minutes to figure out what she was bothered by).
So tonight I arrive there and mom is pretty much expressionless.  She is shuffling around looking at things and asking me what.  I lead her to her bed so that I can clean her nails and toes.  We then travel to the bathroom to do our waxing ritual.  Yes, she still lets me wax her face.  The sick thing about it is that she finds it amusing.  After I apply the strip to her face and yank it off, she exclaims AHHHH and then smiles with a slight laugh coming out.  Each time we do it she laughs.  The even sicker part is that after her turn, she reminds me that I must do it.  She waits and watches to make sure that I apply the strip to my own face and pull it off.  She gets an even bigger smile on her face.  Slightly morbid  Mom.  From that point on, she becomes expressionless and confused again.  She wants to watch As good as it gets so I put it in.  Two minutes into it she wants Devil wears prada,  Put it in wait to minutes and remove. Put in As good as it gets, watch two minutes, and remove.  Repeated this with each move 6 times for a total of 44 minutes.  Finally I tell her wait ten minutes and she gets into the movie.  She tries to tell me something but keeps forgetting. Another thing is that she no longer opens her eyes during the movie.  The entire time, her eyes were shut but she was not asleep.  She seems to have a hard time seeing things now or sees them completely different than we do. About 3/4 through the movie, she looks over at me and tells me she is going to be scared when the movie finishes and how she wishes we had one more movie.  I decide eh why not and tell her I would watch another with her. Her eyes open up big and round and she opens her mouth with the most surprised expression ever.  She just stares at me and then says oh thank you thank you than k you.  It is for those moments that I live for.  She becomes alive again.  In fact, she goes right to the bathroom and takes her pills so easily.  Dad comes home and she starts to tell him different things about the room or what we did.  Dad compliments her on looking so pretty and asks her where she is going-what hot date she has.  My mom looks at him and says "to your room" .  My jaw almost dropped to see her flirting with him.  She twinkles in her eyes and smirks a little.  She ended up falling asleep about 1/4 into the movie and I left her sleeping for the first time ever.  It is so unbelievable to hear the way she understands everything. She is so trapped in her mind and in her inability to speak and she recognizes it.  Tonight she told me she was so afraid at how quick she was going.  She did not want to die yet and miss out on Kenzie.  She felt her body slipping away and she hates it.  It takes her about 15 minutes to express this to me but in the end, I felt such anguish for her.  How hard it must be to know that you are completely useless.  She also told me that it was not fair that dad was able to walk, talk, and do whatever he wanted while she wasted away.  She wanted to be able to do things with him and with us.  She was pacified when I told her it was she that got to visit with Kevin and I. 

Well good news:  I am emptying my plate abit.  Jason and I reevaluated our situation and realized that something had to give.  Youth for Christ takes over our program for teen mothers in September so it was that program we decided to end early.  That means I will have a great deal more time on my hands.  I also am starting my mentorship to become an Infant Toddler specialist  which will be fantastic.  Well once again it is late and I have a busy week ahead of me so I need to get some sleep.  Please say prayers for our last teen mom that had her baby 5 weeks early. She is doing well and baby is in the Nic unit (also doing well).  Good night everyone!