Pretty good weekend...

Well, Saturday was quite enjoyable.  I picked Mom up in the morning, and we left only after she pitched a fit about not having any make up on...So, we made her up and we were off to brunch.  We went to Coco's, and she got to have her super well done toast with extra butter and strawberry jam.  She was happy with that.  Then she said she wanted to go to the mall.  So we went over to Parkway Plaza, and made a quick trip into Macy's, where we dropped a small fortune (very small) on some new shirts for Mom.

Mom was really happy and in a great mood when I left.  Apparently, a visiting RN was there at Magnolia, and in response to Mom's problem with being itchy all over all the time, she decided to try a new medication.  This medication is for neuropathy, and it turns out that the issues Mom was having may have been caused by nerve damage from the stroke.  It seems to be working, and Mom seems to be sleeping more at night...At least Friday night anyway.

Mom wanted me to bring her make up from home, and was not about to be too patient about it.  So, although I try and take Sundays for myself to get stuff done, I dropped by to give my Mom her makeup.  She was having a bad day.  Really missing Dad.  And she finally asked my why she shaved her head...At least she still likes it.

A little news about the memorial service for Dad.  It will be at 9:30 a.m. on Tuesday, April 21, 2009.  It is going to be held at SeaWorld, and I will be creating a web page with instructions on where to go.  It should be done in a day or two.  So, please mark your calendar and save the date.  It should prove to be a very nice event.

Much love.

 

The crazy adventures of Dot and Aimer...

So, let me preface by saying, no tiny 92 lb women were hurt in the process...

So, I arrived to pick up Mom for her ear appointment today.  She was sound asleep in bed...So much so, that I had to rub her head and call her name several times.  She seemed a little upset that I woke her, but I know she was looking forward to going because she had one of the girls there put make up on her.  So, I get her into her wheelchair, and wheel her out to her car.  I lock the wheels on the chair, open the car door, and go to lift her like I do when I move her from her bed to her wheelchair...This is where something goes wrong.  What I think happened is that she didn't help me like she usually does.  So, she turns into a limp noodle...A 92 lb limp noodle...That is screaming at me...She is saying that I am hurting her arm, her jaw, her foot...She is yelling and crying in my ear while I am trying to move her...Not.  Helping.  So, I set her down on the door frame of the car for a second, get my footing, try to tune out the screaming, and grab the back of her pants and hike her up into the seat.  Whew.  She calms down a little, and as I swing her legs into the car, she proceeds to tell me that I did it wrong and I did a horrible job, and I really screwed everything up.  So, I ask her if she is hurt, and she says that she is not hurting now, but I really did a bad job...So, I take a deep breath, close her car door, and go around to put my purse in the car so I could heave the wheelchair into the trunk, and as I open the door, I hear my Mom say "oh, my eyebrows are way too dark..."

The other transfers were more successful.  Mom did have some emotional rollercoaster moments in the doctor's waiting room.  She told me that she is going home, and when she does, it is just going to be her and my Dad and Newman (my dog) and I can just go far away forever.  So, I rubbed her head, and told her that Dad is always with her in her heart, wherever she is...And this was apparently the wrong thing to say at this juncture, because she began sobbing in the waiting room.  I rubbed her head, and told her that I understand (I can't say "I know" because she emphatically tells me that I do not know...), and then tried to change the subject...Which was successful, and within a minute or two, she was giggling...All in all, the appointment went well, and she can hear once again.

I got her back to the nursing home in one piece, and she went in and immediately asked for her meds, and asked if I would get her coffee.  So, I went to get her a cup of coffee, and as I walk back into the room, she is telling the CNA that I dropped her...Oy vey...

Much love.

And then there are good days...

I had a really nice visit with Mom today.  I got there after she finished dinner, where she was sleeping at her table.  I am coming to realize that she cat naps all day long.  And she wonders why she is so tired all the time...It is because she doesn't sleep at night.

But, we called Mom's sister tonight and she got to chat with her for a few minutes.  She really can't pay attention to the phone for much longer than that.  I had to use my cell phone as her phone does not do long distance.  The cell phone on speaker is puzzling to Mom.  We did get a good laugh, because well, Mom shaved her head again, and I was telling my Aunt.  My Aunt brought up the fact that my cousin Lvonne shaved her head first years ago.  My Mom laughed and said that she knew, and that everyone always said she and Lvonne were a lot alike...Then she said, "yah, we are like 2 kinds of feather of a bird..."  Oh, my Mom just cracks me up.

Our visit was so bad on Sunday, I stayed away on Monday, and when I went yesterday, she was sound asleep...And I wasn't about to wake her up, so I left.  When I got there today, she said that she was surprised to see me, and that she didn't think I would be back for a while.  When I mentioned that Sunday was a little stressful, she looked right at me and said "well, I wanted my cigarettes...They calm me."  So, she knows exactly what she is doing, but she just can't help it...Or doesn't care.  I told her that she got so angry from the nicotine withdrawal, and that she has such a hard time controlling her emotions without nicotine...And I told her about the elderly man that just died because he dropped his cigarette on his Depends and he went up in flames...I know scare tactics aren't nice, but I have to try and persuade her...

Well, tomorrow, I am taking Mom out of Magnolia for the first time since she got there in late January.  We are going to the ear doctor.  But, when Mom was telling the CNA tonight that she was going to the doctor tomorrow, she followed it up with "my ear doctor is really close to Macy's..."  Oh geez...For someone who is supposed to have memory problems (even before the stroke), she sure holds onto some things pretty tightly. Bless her heart.  Since it is her first visit out, I am not sure how tired she is going to be, but we will play it by ear.  Wish us luck...;)

Much love! 

One day at a time....

This weekend was a little tougher...My days were not as filled with busy stuff, and there was time to let myself grieve.  I miss my Dad a lot, but still thankful he is at peace.

Mom is struggling a lot.  She is really having a hard time dealing with everything.  And, since there is no rest for the wicked, I have been presented with my next battle.  the Sharp case worker has apparently decided that my Mom is not progressing enough, and wants to put a stop to Mom's physical therapy.  UGH!  I guess the "tribunal" meets tomorrow to review her case...I have told the social worker at the nursing home that I feel she still has potential, and to take this away from her now would be a big mistake.  I will just have to hope for the best outcome possible tomorrow, and if I don't get it, then I am ready for another battle.

And to top it all off, someone at the nursing home bought Dorothy a pack of cigarettes...Nice.  Mom won't tell me who...I would like to thank this person for their help and generosity...For someone to commit to supply Dorth with cigarettes and take her out to smoke...Because I will not do either of those things...And boy is Mom not happy about that.  She is really mad that I took the cigarettes away from her...Oh well...I feel like the mean old parent trying to keep their teen off drugs and alcohol...Do not envy you parents out there...

Looking at the week of April 20th for Dad's memorial...I will have the exact day firmed up sometime this week and I will officially let you know.

Thank you for all your wonderful emails and cards.  They are so appreciated.  Your thoughtfulness is once again overwhelming.

Much love!

A note about the memorial and how we are doing...

Due to some unforeseen circumstances, it looks like we will be pushing the memorial service for my Dad  to mid to late April.  I will keep everyone posted via the blog, and as we get closer to a confirmed date, I will let you know.

In the interim, if there is anything you would like to do to honor my Father, you could always donate money, your time or your blood in his name.  As you know, my Father was a very generous man.  He was always willing to commit to helping others in any way possible.  There are many worthy causes out there, but if you do not have a favorite charity, some of Dad's favorite were the American Cancer Society, Sports-A-Thon, Special Olympics, the Rescue Task Force and the American Heart Association.  I understand that the economy is in a really bad place right now, so if it is not in your power to donate money at this time, there is always opportunity to donate your time, or the San Diego Blood Bank is always in need of blood.  He took such pleasure in being able to donate whole blood, plasma, platelets and packed cells religiously, knowing it would go to help people in need.  I am sure there has been a void since Dad was last able to donate back in April of last year.  He was donating using the apheresis machine every three weeks since his retirement in 2002.

Well, I am sure I am in store for a wall of emotions at some point, but due to being very busy this week with necessary stuff that no one ever wants to do, I have been holding it together pretty well.  I go back to work tomorrow, so I was trying to get as much done as possible.  I have been going to therapy since Mom got sick, and my therapist says that since I have been grieving for the past nine months, that I am probably doing pretty good.  Only time will tell.  I truly miss my Dad.

Mom continues to struggle.  The grieving process is a struggle for Mom.  She just misses him so much.  And that impacts her mood so much.  When she is down, she really goes to the extremes.  She is back to feeling out of control, and doing anything she can to try and regain any control possible.  I wish she would focus all of that energy on her physical therapy, but the latest is that she wants her feeding tube removed.  I am just so hesitant to go down that road at this time.  She weighed 92 lbs today when they weighed her, which is still a little low in my book, but I think that the only reason she weighs that is because of the nutrition she receives through her feeding tube.  She just doesn't eat enough to maintain any sort of weight, and once again, her willingness to eat is based on her mood.  I will just have to wait and see how we can get things to play out with her.  Hopefully, time, patience and understanding will prevail.

Much love to all!

Edward G. Reed, Jr. 1934 - 2009

I am so sorry to report that my wonderful, amazing father passed away on Sunday afternoon, March 15, 2009.  I am equally sorry if you were very close to him and are finding out about his passing here on the blog...This is a fault in the wonderful thing called technology.  We made every effort to call as many of you as possible, and I am so sorry if we missed you.

I am sure it is quite a shock after reading Thursday's blog.  Dad took a turn for the worse on Friday morning.  He began having seizures and required extreme sedation to calm them.  And yesterday, at approximately 1:00 p.m., Dad peacefully left this Earth, free from the pain and suffering.  He has finally been freed of the bonds of illness and imperfection.

My Aunt and I were with him...He waited for me.  I got there, and within about 5 minutes, he took his last, peaceful breath.  

I think my Aunt and I both were struggling with his passing beforehand.  I knew I didn't want him to be alone, but I was so afraid of the moment and what it would bring.  I should have known better...As always, my Dad knew what he was doing and took care of us as he always has.

My Mom is taking it hard, as you can imagine.  On top of the awful, unfathomable situation of losing your lifelong soul mate, she is struggling with the complications of the stroke.  She completely understands what has happened, she is crushed and heartbroken, and having difficulty determining how she will go on without him.  She is having trouble controlling her emotions...I sort of liken it to a television rapidly switching channels.  She is able to stay on the same topic, but one moment she is upset that he is gone, the next she really wants some coffee, the next she is worried about how she is going to go on without him, the next she is mad at him for leaving without her, and the next she is looking forward to planning the memorial together.  While all of these are understandable, and acceptable emotions, she will experience these emotions consecutively and separately within the span of a minute or two.  Bless her heart.

I am doing fairly well.  As I tell my Mom when she wonders how she will go on without him, although it was my Dad's time to leave this Earth, it is not ours, and we need to go on living as we have things yet to accomplish here.  And I will take every opportunity I have to make my Dad proud of me...It is not that much different than how I have always lived my life, but now I get to do it on my own.  

There is a tremendous sense of relief...A weight lifted off my chest.  I will miss my Dad every day of my life, which I don't think is unusual, but the end of the suffering and pain is truly a blessing.

Thank you for your thoughts and prayers for Dad throughout this horrible illness.  Your visits kept him going, and your love and support of Mom and I meant more to him than you will ever know.

We will be working on the memorial service details over the next few days, which I will post here in the blog and in the obituary when things are firmed up.

Much love to all and many blessings to everyone.  Heaven has a new angel looking out for us all.

Not much new to report.  Everyone is doing about the same.  Dad was very alert tonight, and talking a lot.  I love to hear my Dad talk...Often, it is complete nonsense, but he does it in perfect grammar.  Perfectly spoken, proper sentences that mean absolutely nothing.  Well, it may mean something to him, but not to anyone else.  And many times, if you question him, he gets kinda mad.  Or if he knows he is speaking nonsense, he will close his eyes as if to pretend he is sleeping.  It is pretty cute.  His edema in his legs appears to be getting worse.  I talked to the hospice LVN tonight, and she was going to question what else we can do.  We will see what comes of that.  I am a little bummed...One of my favorite nurses there at Magnolia is on vacation for the next month.  She is really on top of things and knows her patients inside and out.  I will miss her while she is gone.

Mom is pretty good.  She was really sleepy tonight.  She said that she had not slept at all the past 2 nights.  If that was the case, maybe she is just really tired.  She was happy because someone came by today and put some makeup on her.  She looked really cute, even with her bald head.  I think she was a little upset that these ladies were also doing hair...LOL.  I am sure I will go to hell for giggling at Mom's decision to shave her head, but you have to admit, it is a little funny.

She tells me she is getting better at walking with the platform walker.  She really is getting stronger physically.  The platform walker is very much like a regular walker, but it has extra apparatus on top.  They allow you to rest your arms straight out on flat, perpendicular platforms, and then hold hand grips.  This allows Mom to learn how to balance, and to get move her legs and build her muscles.  Eventually, the goal is to get her to a cane that has a tri-pod on the bottom...Well, it has 4 feet, not 3...(quad-pod???), but it provides more stability.

It is pretty funny, now that I am going less to visit, whenever I get there, invariably, one of the staff there says something like "have you seen your Mom?  Boy is she mad at you..."  And luckily, by the time I get in to see Mom, she has either forgotten, or is too busy ordering me around to be mad...Not that it has stopped her before.  I will take whatever I can get.

I am going to attempt to take Mom to breakfast on Saturday.  It will be her first trip off property since she got there in January.  I am a little nervous that if it goes well, she will want to do it all the time and will get obsessed with it, but I still have to try.  We are just going to go to Coco's, and she how she does out in public.  I am concerned that she will get tired quickly, or she will get so preoccupied with something (pain, her looks, not able to eat like she used to, self-conscience), and she will get so upset we will have to leave.  That is why we are going early, in hopes that she will be well-rested, and we are going to someplace close, and familiar to her.  I hope it is something we can enjoy together once or twice a month, and that it doesn't cause more problems than opportunities, but these are going to be the first steps to seeing how well she will get along in the future.

I will probably not seeing the folks until I take Mom out on Saturday.  So, I don't know if I will have any updates until then.  

Until then...Much love!

I guess I could buy her happiness...:)

Well, I got to Magnolia tonight in time to feed Dad his dinner.  He didn't eat as much as he usually does, but he did ok.  He didn't even want ice cream tonight.  I got a call from the hospice nurse, and they are going to put him on Tylenol every 8 hours regularly so that it might help his pain.  He is not in a great deal of pain, but when they dress his wounds, he gets sore.  And I would rather have the Tylenol if it will work on the pain than something stronger, because those just knock him out.

Mom was ok tonight.  I bought her some new clothes, and she was pretty excited about that.  She said that she has taken to going into the dining room and falling asleep.  I told her that she needs to get more sleep at night, then maybe she won't fall asleep in her wheelchair.:)  

She enjoyed her visitors this weekend...I forgot to mention that she shaved her head again.  It is kind of funny...I like to hear her explanations to people as to why she shaved it...When I wasn't there, one of the CNAs asked her why she shaved it again, and she told her "to spite Aimee."  She sometimes says that she has always wanted to do it, and tonight, she told the nurse that she thought, that even though they got all the cancer, she thought that she might have to have chemo and radiation, so she shaved her head just in case...And the best thing, is that she believes each one every time...:)

Just a little sad note...Logan, my friend's sweet greyhound passed away today.  Please send thoughts of peace to Chris and Allison, and Roxy, their other greyhound.  Farewell sweet Logan.

Much love.

I hate it when i am right...

Well, Mom's psych consult happened on Friday evening.  It went as well as expected, I guess.  The doctor made some adjustments to her medications.  I got a chance to speak to him and he was really good to talk too.  He didn't tell me what I wanted to hear, but he told me what I had suspected.  He says her behavior is a direct result of the damage caused by the stroke.  He said that the change in medication may help to even her out a little, but that this is how she will be from now on.

He said that this kind of stroke robs their victims of their ability to censor their thoughts.  They think them and are not able to filter their actions.  He says he has a lot of male patients that fondle female nurses not because they are perverted, but that they get a thought, and act on it without taking into consideration the ramifications.  He said she is actually pretty good...Has concept of where she is and what happened, and her short term memory is fairly good.  But he says she is much like a child, and will not listen to something she does not want to hear, no matter how rational it is.

I asked him his advice on how to avoid the triggers that set her off.  He said that we need to keep encouraging her, and praise her as much as possible.  Let her show what she is proud of, and get excited for her.  He said that I need to not be afraid to lie to her and not tell her things that will upset her...Well, things that she does not need to be told, anyway.  He also used a metaphor to help me understand...He said that it is a little like playing a board game with a 4 year old...If you stick by the rules, the 4-year old will get mad and leave.  But if you let them have some extra turns, and skip some spaces, and roll the dice until they get a higher roll, they have a lot of fun and enjoy themselves.

He also told me that his strongest advice was that I need to not visit as much.  He said when family visits every day, it inhibits the person from being able to fully integrate with the nursing home.  They become used to delaying what they want until family gets there, and do not learn to get used to how the nursing home works.  He said that it would be good if I go 3-4 times a week on average, and to not stay too long.  This will help Mom to get more comfortable, and it will have her looking forward to my visit, and give her more to talk about.  It does make sense, and I know that often times, my presence just winds her up.

I did ask his opinion on her prognosis, as far as the likelihood of her living at home again.  He said that depends on how she progresses physically.  He said that she should not ever be left alone, so coming home will need to include supervision at all times.  I know it is not going to happen in the next few weeks, so I will just have to take things as they come.  She needs to keep up with her PT as long as possible, so she can get stronger and gain as much mobility as possible.  I am also hoping that she will stay there with Dad as long as possible, because time is precious with him, and at home, she is not able to roll in and see him anytime she wants.  That is one of those concepts she is not really grasping at this time...Just have to take things as they come...

Dad is doing pretty well.  Quite alert at times.  It is so nice that he does not have to leave Magnolia, where he is used to the people and sounds, etc., but still has the benefit of hospice.  So far, hospice has been a great addition and they are taking such good care of him.

Well, we just keep pushing ahead, hoping for the best, fighting our hardest, and being thankful for each and every day.  My visits will be a little less frequent, so if you can stop by when you have some free time, they would love it!:)

Thank you for all you do. When you keep us in your prayers and good thoughts, please take a short moment to include my friends Chris and Allison as well.  Their sweet Logan, one of their two retired racing Greyhounds is going through some significant health issues at this time.  Keep hoping for them and sending your positive energy that he will be strong enough to pull through his ordeal.

Much love! 

A little better today...

Mom's still mad, but calmer today.  She did just a little PT, and she was sitting with Dad when I got there.  I am still very concerned about her.  She was still mad at all she was mad at yesterday (mainly me), but she was less agitated about it.

When I left tonight, I told her I loved her like I do every night, regardless of her mood, and tonight she said, "I love you too, you know I do...I just get mad sometimes...And frustrated."  I told her that I know, and she should try and get some sleep.  She really hasn't slept in 2 days.  She was understandably tired tonight.  It is so hard for me to figure out...She knows what she is doing, but it is like she can't control it, or just doesn't care to control it.  We will get to the bottom of it, but it is just a matter of time.  

She started having trouble hearing.  She claims it has been coming on, but today, she can't really hear anything.  I am going to see if I can get her an appointment with her ear doctor to see what the problem is.

Dad was ok tonight.  I think hospice came in today and put him back on oxygen.  We are not sure why...If there is any actual reason, or if they just thought since the tank was there, they would use it...We should find out tomorrow.  He ate about half of his dinner, and I got him to eat most of his pineapple sherbet, and some of his chocolate Ensure.  He was not as lucid as he has been, but he was awake.  

At one point, Mom and I were sitting in Dad's room, and the nurse came in to give Dad his night time pills, and Mom was complaining about the dining room and the nursing staff, and my Dad said "Dorth...Knock it off!"  She said "what" and I told her that Dad told her to knock it off and that he had her number!:)  She laughed a little, and was happy to hear Dad talk.  It made my night.

Much love!

Tough night for Dorth...

Mom is really struggling emotionally.  I am not sure if she is just finally getting the grasp of all that has happened, or there is damage from the stroke, or her medication is causing it, but she is really having a hard time coping.  She is barely sleeping and very mad all the time.  She feels very alone and frustrated, but she won't let anyone help her.  She refused to do physical therapy today, and was so worked up, she said she didn't see Dad all day.

I know she is upset and frustrated, but if she keeps up this pace, she is going to make herself sick.  I am worried about her.  She is livid with me, and told me not to come and visit, but when she heard I was in feeding Dad (I was going to see her before I left), she said she wanted to talk to me...Then she started yelling for me...So, I went in her room, and she just wanted to give me a piece of her mind.  I know this is not her...I am just concerned that she gets herself so worked up.  She is feeling very helpless and out of control, and that has got to be a horrible feeling.  They gave her something to calm her down, and hopefully she will get some sleep tonight.

Dad, on the other hand, was doing pretty well.  Calm, awake, and happy to see me.  He ate some of his dinner, and I gave him an Ensure.  He was hurting from the edema in his legs, and his hands from the skin tears.  But, he was still smiling and happy.

Here is to hoping that tomorrow brings help and peace to Mom.

Much love!

Another pretty good day...

So, since Friday, when Dad was put on hospice, he has been visited by 3 RNs, an LVN, a social worker and a chaplain...And most have called me to give me an update of his present condition.  A couple of them have even stopped in to see Mom...

Mom has been struggling a lot.  She has been going through highs and lows, but more so lately.  The good thing is that she does go and see Dad a couple times a day, and for the most part, enjoys her PT and is continuing to get stronger all the time.  Although, when she experiences a low, she doesn't have patience for anyone, and doesn't want to eat or do PT.  This is really tough on her.

Dad has been remarkably lucid the past few days.  He has been awake and conversational when I have been there.  They say he has been eating well, and although, the conversation does not always make sense, it is sure good to see him smile and hear him say "thank you" when I tell him that I love him.  I will take as many of these little stolen moments I can.

Much love!

Exhausted all around...

The weekend went pretty well.  Everything was about the same.  Mom is not quite as patient, but is hanging in there.  She has started denying particular CNA's if she doesn't like them.  I keep telling her that she really can't do that, and she insists that yes she can and she will whenever she wants to...Nice.

Hospice came and evaluated Dad on Friday and then today, another nurse, and social worker came to visit.  He was remarkably lucid tonight.  He was awake and talking a lot.  They took out his feeding tube today, and wouldn't you know, he didn't like his dinner, and didn't want to eat.

Much love!