Friday, December 28, 2007

"If you lead your life the right way the karma will take care of itself... the dreams will come to you." ~Randy Pausch

I saw this man, Randy Pausch, on the Oprah show a month or so ago. He is dying from pancreatic cancer, however, he looks to be in perfect health. He gave this amazing lecture at Carnagie-Mellon University back in September... his "last lecture". I'm posting this video clip and interview with Diane Sawyer because in some ways this man is living his life; what is left of it; to his fullest. He reminds me that this is what my mother has been doing for the past 30 years when doctors told her she wouldn't live to the age of 42. Watch the video, it's wonderful. He is so wise. Let me know what you think.

Thursday, December 13, 2007

Guilt, Exhaustion, Frustration, and Excitement - Christmas is coming!

I went to my support group meeting last night (Wed. 12/12). Dad and Aunt Margaret were already there when I arrived and I was about 10 minutes early. I missed the past two meetings... I forgot about it last month, then the one before that David was out of town and I didn't have anyone to watch the kids.

I didn't really feel like much was accomplished in last nights meeting. The moderator was about 25 minutes late. We started the meeting without our moderator, there was one new woman there who had just admitted her mother into the memory wing 2 weeks prior so we all had to introduce ourselves to her and state why we were there and it ended up taking the entire hour so we didn't really get to learn anything new about each of our situations.

I did learn, though, that my parents are having a really good "spell" right now. Dad said that he and Mom will sleep in late, piddle around the house, go back to nap some, get up and go bop around town a little, go back home and nap some more... they seem to be spending a lot of good quality time together which makes me very happy. My parents really need some good QT.

When it came to my time to speak during the meeting I started to tear up a bit and get that painful lump in my throat (not sure why). I mentioned that I had begun to distance myself from my parents a little for reasons that I'm not even sure of. I think I am just exhausted physically from taking care of my own household and kids... mentally worn out for the same reasons AND having the worry of having a sick mother as well as the worry of the well-being of Dad who is the caregiver. I don't really know but I need to get my butt into gear. I talked to Dad about it a little after the meeting and I started to tear up again. I DO feel guilty about it, I feel like I should be doing so much more, I'm just not sure what to do. I worry that my kids are exhausting to my parents, I get too stressed out when I take my kids to their house because I KNOW that my kids are exhausting. They run amuck when we are there! Therefore I don't take my kids over. Now I'm just babbling on and on..... blah blah blah.

I'm getting excited about Christmas this year. It has become my favorite holiday again because of my kids. I LOVE watching their excitement and enthusiasm in the weeks leading up to Christmas. Then there is Christmas morning which is indescribable. Those of you with children know what I mean. Now I know how my parents felt when my sister and I were kids. This year will be great in another way in that we get to spend Christmas evening with my side of the family at my sister's house. This means a ton to me. I really love going to my in-laws but, for me, there is nothing more special than being with your own family. I think it'll be great. Our family has such a warped sense of humor... we run around shooting each other with Nerf guns, screaming and yelling; reciting lines from our favorite movies; tell really bad jokes; reminisce about the past and talk about all kinds of things that others might consider taboo. I don't know... we are all a bunch of goofballs, we can all be kids again when we are together. I have such warm fuzzy feelings when we are all together.

I love my family so much... my whole family!

Anne

Thursday, December 6, 2007

Bromley Girl's get together for Christmas...

All of us women of the family got together for our annual Christmas... uh... get together. This year we did dinner and wine tasting at my Aunt Margaret's new condo. A good time was had by all.




Wednesday, November 21, 2007

THANKSgiving (11/21/07)

As Thanksgiving draws near, like everyone else, I am thinking of all of the wonderful things in my life that I am truly thankful for... my couldn't be more perfect husband, our healthy, beautiful children, our cute modest home, and our health.

I'm incredibly thankful that my mother made it through her pacemaker surgery. Although this type of surgery is considered somewhat "routine", Mom's wasn't without complications and an extended hospital stay. However, she managed to pull through as she always has... with a strong will to survive and a great, warped sense of humor. Her philosophy is that if you don't laugh about certain tragedies you will drown in self pity... self pity uses up too much energy... laughter IS the best medicine (and she is proof). I'm thankful that Mom is still alive after 30 years of having the "rug pulled out" from under her... I'm thankful that Mom still has most of her sense about who she is and who all of us around her are... I'm thankful that I can still hug and kiss her and tell her how much I love and appreciate her.

My cliche advise to everyone is... while you are sitting at your dinner table tomorrow for your Thanksgiving dinner look at everyone there and think of how fortunate you are for the "gifts" bestowed upon you by having each of them in your life. Make a toast and enjoy the afternoon basking in their presence... play games, laugh, tell stories of past memories and relive them with a smile.

Happy Thanksgiving One and All!!

~Anne

Thursday, November 8, 2007

EMOTIONAL ROLLERCOASTER

Mom is being released from the hospital today. She is still having chest pain but not severe like yesterday. For 30 years her doctors have always had her close to deaths door and she always slams the door in its face. Thank goodness Mom is not ready to go yet. Can you believe this?!?!

Talk about an emotional roller coaster!! Last night they were saying they thought she had this clot in her lung... now they seem to be dismissing it. I don't get it but I'll take it!

~Whew~

Dangerous and Scary right now...

Mom had her surgery on Tuesday to have her pacemaker put in. She is still in the hospital because of complications. Her pulse rate was up to 157 and she has been having consistent severe chest pain. Found out your pulse rate should be at about 70 or so.

Doctors think she might have a pulmonary embolism (a blood clot in her lung) so all of the sudden this has become a very dangerous time for her. She's been moved to intensive care.

~sigh~... nothing is ever easy for her.
We are all holding our breath. I fear that this hospital stint will reek havoc on her dementia.

Wednesday, November 7, 2007

Premature Update...

I guess I sent the update out too early. I just talked to Dad and there are, in fact, problems. Mom will probably be in the hospital for a couple more days.
Her pulse rate actually did get high last night, up to 157. I'm not quite sure what it should be normally. She has been having severe chest pain and the doctors cannot figure out why. The pace maker is functioning normally.
These health problems with my mother are so exhausting to all involved.

UPDATE

11/7/07 UPDATE:
Talked to Dad this morning about 9:00. Mom had called him during the night complaining of her blood pressure skyrocketing. Dad called the nurses (she's still in the hospital) and they assured him that was not the case. I mentioned to Dad that maybe the pacemaker is working and she's not used to her heart working to normal capacity, which he said, "yeah, you're probably right". I'm sure to her it did feel like her blood pressure was sky high. This is just my theory.

~ANNE

Tuesday, November 6, 2007

Success So Far

Dad called about 45 minutes ago to let me know that Mom came out of her surgery fine. The doctors seem optimistic that this pacemaker will REALLY help her feel better. They (the doctors) have admitted her to the hospital to stay the night for observation. Sooo, for now all we can do is wait and see...

Love you Mom!
Anne

Wednesday, October 31, 2007

HEART SURGERY

October 31, 2007

Mom is having her heart surgery next Tuesday (Nov. 6). She is having a combination pacemaker/defibrilator put in. We are hopefull that it will help to give her the energy she has been so lacking, her heart is functioning only at 20% capacity. She's been having a tremendous amount of chest pain and absolutely no energy.

I'm concerned about this surgery because I'm not sure if she needs to be put completely under anesthesia or partially. A couple of years ago when it was discovered that she had a leaky heart valve we were told that her heart was too weak to handle anymore surgery, she was too weak to handle the anesthesia, and there was not a cardiac surgeon who would touch her because of her fragile condition.

Sooo... back to my last post... this could go really well or it could go really bad.

Mom is anxious to have the surgery because she is so hopeful that it will help her feel better. While I'm hoping for the same results I'm terrified of the worst happening.

Keep you fingers crossed for our family that all goes well next week.

~Anne

Saturday, October 13, 2007

10/15/07: A Wonderful Window of "Opportunity"


Mom and Dad came to visit Saturday. What a beautiful afternoon... cool, no clouds in the sky. Mom was great, Dad seemed happy and was playing with the kids in our back yard.

Mom didn't remember ever seeing the swingset equipment that she and Dad gave the kids a couple of years ago. I tried to ease her mind by telling her that it was probably because we never sit on the back porch when they are over (which wasn't true but I didn't want her to feel like she was having one of her "moments"). I didn't dare tell her that she and Dad gave it to the kids. Other than that everything seemed pretty normal.

The 4 of us laughed a lot, the kids kept wanting their "Dat" (Dad's grandfather name given to him by Emma) to come down into the yard to play. He was loving the attention. David played too. Mom and I had a great time talking around the table on the porch. Emma and Wade would come up periodically and hug their Marin (Mom's grandmother name also given by Emma).

I LOVED my window of "opportunity" to see my mother the way she was before her diagnosis, for the most part. I took it and went with it!

Love you so much Mom!!

~Anne

(Photo: Hilton Head Island, SC 2004 - Anne holding Wade and my mother Marilyn)

Friday, October 12, 2007

PEACE

May 28, 2006

(Photo: Hilton Head Island, SC 2004 - Mom looking for shells)

10/12/07: FORGETTING, BETRAYAL, & LOVE


Sometimes Mom thinks Dad is HER father.

Mom asked me one time if her mother was still alive. Her mother passed away 30+ years ago.

I feel guilty writing or typing these things, as if I am betraying her and her dignity. I just want to keep a log of everything that is going on. Am I crazy? Am I betraying my mother?

There are some days that I can't get the motivation to call Mom on the phone. I never know how she will be. Will she be too tired, will she be confused, will she feel bad, will she be in pain? Some days it's too stressful for me to make the call. Then comes the guilt... again. Feeling selfish.

She is so afraid. She is so afraid of forgetting... everything, everyone, herself. Afraid of the indignity that comes in the late stages of the disease.

I love you Mom, so much.

~Anne

(Photo: My wedding day at Duncan Memorial Chapel in Crestwood KY, 2000 - Mom & Dad)

Tuesday, October 9, 2007

REMEMBERING









This could be really good or it could be really bad...


Mom hasn't been feeling well for several days. She is extremely low on energy. She said it takes every ounce of energy she has just to lift her arm. Mom has a leaking heart valve which deprives her body of oxygen. Her heart is too weak to be operated on to repair the leak, there is not a cardiac surgeon anywhere who will touch her. Because of this she is supposed to use her oxygen machine almost all of the time.

Today is dad's 73rd birthday. I called him this morning to wish him a happy birthday. He told me that Mom is at home still sleeping. He informed me that Mom's cardiologist wants to implant a heart defibrilator, kind of like a pacemaker. The doctor is hoping this will help her "feel better". The doctor is waiting for the yay or nay from Mom as to whether or not she wants to do it. Dad said she wants to do it. This is scarey for me to think because in the past we've been told that she could not tolerate being put under anesthesia, her heart is too weak. I asked dad if they would do a local anesthetic or would they have to put her under to do the surgery? He wasn't sure but he assured me that it's a simple procedure. I'm not so sure. But then I think, what does she have to lose? Mom is so sick and she has no quality of life the way she is right now.

A little background information on Mom's health. At the age of 40 she had her first of three bypass heart surgeries. Her first one was a double bypass. We were told that she would not live to her 42nd birthday. My sister and I were ages 12 & 15 (about). Talk about devestating news! Hospice was assigned to our family and they counseled us for months. In the end Mom proved the doctors wrong. She survived and is now 70! She fought hard to make it this far!

It hasn't been an easy going 30 years for her though, or for us either with her diagnosis of coronary artery disease. Over the past 30 years she has endured 2 more bypass heart surgeries, numerous angioplasties, several stents, diagnosis of the following conditions & diseases... Multiple Sclerosis, diabetes for which she is almost completely insulin dependant, osteoperosis, osteoarthritis, rhuemetoid arthritis, fibromialgia, her leaky heart valve for which I cannot remember the medical term, and now, because of all of these conditions she has developed vascular dementia or alzheimer's disease. All of this is terrible but the latter of the diseases is, of course, the worst of all. How can you help someone feel positive when they are slowly losing all of their memories.

Back to the heart defibrilator surgery... I have mixed feelings about it. I so much want her to feel better but I'm so scared that the surgery will be too traumatic for her. The cardiologist wants to do the suregery right away. Not sure if that means this week, next week, next month????

How can such a wonderful, sweet, loving woman endure all of this? Why has she had to endure all of this?
I suppose all I can do is wait and see.

~Anne
***************************************************************************************************
A PERSONAL NOTE WRITTEN BY MY MOTHER dated 8/23/99 to her neurologist (I found this while helping my parents clean and organize their home office)...

My neck is still very painful. I wore the brace, backward, for two weeks as you asked me to do. It caused me to have headaches and made my neck hurt worse. Since I have taken it off I do see some improvement in the neck but it still is extremely painful when I turn my head to the right or left. The pain radiates out into my shoulders, down my back along the spine, and onto my collarbones - especially the right side. When I tilt my head back to drink or put drops in my eyes, it is painful.

I have stopped carrying my purse on my shoulder.
It is too painfulfor me to wear any but the lightest weight necklaces. They make my neck hurt. It makes my neck hurt to wear a chef's apron around my neck. I fold the apron in half and tie it on.
I have pain behind my eyes frequently. Mostly it is my left eye and when it hurts, it hurts.
My feet are numb all the time now. There are times when my feet feel as if they are burning. {hand written to the side} but they also feel very cold.
There is pain down the back of my right leg.
When I walk I develop pain in my hips that make it difficult to continue walking. It hurts and the area around my hips feels very tired. According to the Dr. Lehmann there is no arthritis in my hips or neck.
I feel my thought processes are slow and sluggish. It is hard for me to figure things out. I cannot figure tips, split the checks when I am out to lunch with friends. Sometimes when I am reading directions, I cannot understand what I need to do. It does make me feel dumb. I used to be able to do those things with no problem.
Sometimes my vision is so weird. It seems I am operating in a fog. I cannot see well and I cannot really tell what I am seeing. It is as if things are just not computing.
Why is this happening? I feel as if I am losing my ability to function on my own. That is scary!
{the rest of this is hand written on the bottom of her note}
Sleep at night difficult - OK in day time naps, etc.
Pain in neck wakes me up at night.
It is hard for me to write - I cannot write well anymore. I just kinda scrawl whatever comes out.
Pain comes in my calves after I walk a short distance. Mostly though it is in my right calf.
************************************************************************************************

(Photo: Flame Run blowing our own Christmas ornaments November 2005 - Mom & me)

Monday, October 8, 2007

This is what the stress of dealing with losing a loved one to Alzheimer's disease looks like.

Sept. 13, 2007: It's so hard to watch someone forget

September 13, 2007 - Thursday


It's so hard to watch someone forget

Yesterday afternoon I had so many errands planned while both of my kids were in school. While I was sitting in carpool line to drop Wade off at preschool, around 12:15 I called Mom to check in to make sure she was able to make herself lunch. We talked for a few minutes, I told her I had several errands I had to run and that I would call back to check in with her a little later.

Back up to earlier yesterday morning, my dad called telling me that mom's nurse wasn't going to be able to take care of mom (yesterday). Mom's nurse was admitted to the hospital for some swelling in her arm. Dad said he was playing golf and that Mom was going to be okay by herself for a few hours. My sister had a full day of work, she had a Fleet Feet "bigwig" coming in for the day and would be unavailable.

Now... back to me talking with her on the phone while in carpool line. After I hung up with her I decided to forget about running my errands, I would go over and spend the afternoon with her. I dropped by the folks house unannounced. To my surprise this made her day, she was so happy to see me. In short we talked, we laughed about a lot of things, and we cried about a lot of things... mainly about her dementia, and we hugged each other a lot.

One of the things Mom said to me that really made me tear up was that being diagnosed with vascular dementia was worse than being told she was going to die. I didn't know what to say so I just gave her a big tight hug and told her I loved her so much. What could I say to make it better? Anything good I could tell her would be a lie because there is no way she will ever recover. All I could do was hug her and tell her that we are all here for her. Not much of a consolation when you know you are losing yourself, so to speak.

I went to my monthly Alzheimer's support group meeting last night. I always feel so enlightend when I leave the meetings. It's comforting to know that we are not the only family dealing with Alzheimer's disease. Everyone in this group is able to understand what the other is going through. The meetings always make me feel like we can get through this.

At the meeting last night my dad made a breakthrough realization (FINALLY)! He talked to our group leader who also happens to be the chaplin at the Episcopal Church Home (this is where the meetings are held). He told her that he has finally realized that he needs to get mom's name on a waiting list for the memory wing at the "home", that if she ever needs to be put in a "home" that ECH is where he wants her to be. I couldn't believe I heard those words come out of his mouth! I have been begging him to do this for months!

About putting mom into a "home" is such a sad and scary thought. None of us, including Mom, wants this to happen. But this is a double edge sword. If she never has to be put in the "home" then it means, well that she has passed on. I can't bear the thought of losing my mom. But I'm losing her either way, right? As hard as it is to think this, to say this, to type this, I don't want my mother to lose herself, I don't want her to lose her mind, I don't ever want to experience the day when she doesn't know who I am. I don't want her to die either.

I love my mom so much and I'm so sad.

~Anne~

Aug. 9, 2007: I HATE Alzheimer's disease!

August 9, 2007 - Thursday


I HATE Alzheimer’s disease!

My father, my aunt, and I attend a monthly Alzheimer's support group meeting at the Episcopal Church Home in honor of my mother, my father's wife, my aunt's sister. It is a wonderful group of people, we are all dealing with the fact that we are losing our loved one's in the most cruel way possible.

The meeting last night was, I believe, a real eye opener for my father (and me) and here is the reason I believe this...
Dad was telling us, the group, that Mom has entered the stage known as Sundowners Syndrome which is where as the day progresses, she becomes more and more aggitated, more angry. This is common in Alzheimer's patient's. She and Dad get in pretty heated arguments now, anything will set her off and my father is a "natural arguer", if there is such a thing, so he will give it right back to her (which he really shouldn't be doing). The group moderator said something to my dad that was so sad and upsetting. She said, and I'm paraphrasing because I can't really remember word for word... "You are in a lose lose situation with your wife because she can no longer comprehend certain things. Two-way conversations can no longer exist because she cannot remember" or something like that. I was sitting next to my dad. I heard him take a big sigh and his head dropped. When I looked at him I saw tears in the outer corners of his eyes.

You have to understand the relationship between my parents to really understand why this is so incredibly sad. My parents have been married 47 years. I have never known two people whose lives were as intertwined as my parents, so much so that I don't think one can live without the other - really. One thing that my father said was... of all the 30 years that my mom has been so sick "I always thought we would have our memories".

I don't see my mom on a day to day basis; I just can't be over there everyday with two small children. I can still call Mom and ask her for advise on children's issues or how to cook a particular dish because all of this information is part of her long term memory (30-40 years ago) which, so far is still pretty much in tact. To me she seems the same... until she tells me something 4 times in a row and each time is as if she had never said it. I can't let her know that she already told me so I have to pretend that each time is the first time... we all have to pretend.

I think in some ways my dad is still in denile. I cannot convince him to put her name on a waiting list for the Memory Care Wing at the Episcopal Church Home (for Alzheimer's and Dementia patients). He keeps saying "I'm not ready for that". I don't think any of us are but it must be done. How can I convince him?

How will we ever get through this? How do other families do it? Why is this happening to my wonderful, loving parents?

My father is grieving so. He has already lost his wife. All that is left is a shell of her with an occasional peek into how she used to be. That peek gives us all false hope. This is the most cruel, unforgiving disease and it is effecting all of us who love her.

I HATE IT!

~Anne