Christmas Woes

It's been a while since I last wrote I know, but it's typical for this time of year.
I've been finding it hard to keep up the "holiday cheer", this year more than most. I know it seems like every Christmas I worry about Mike and wonder if this will be our last together, but this year, it seems more likely than ever. I think back to last January when he first started developing the bed sores. Not only does he still have them (one year later), but they have gotten bigger and deeper, sometimes getting worse, sometimes looking as though they will clear up, but never going away. I cannot even imagine what it feels like for him and my heart just breaks at the thought. He's lost so much weight you can visibly see his ribs and his spine and his eyes look sunken in. I can wrap my fingers around his ankles, his arms are like sticks. I try to be strong for the family, but nighttime is torture. I lie next to him and usually cry myself to sleep.
We've all lost so much. There's NOTHING that I do, where I don't think about what it would be like if Mike was healthy.
I'm going to pick Brandon up at school on Friday for his Christmas break and we have to rush back home so we're there in time to get Mike into bed. If Mike was well, we'd take a leisurely ride up to CT, get Brandon and maybe stop for dinner somewhere. Mike and Brandon would have been the best of friends. I just know it. They are so similar. But Mike missed out on having that relationship with Brandon and Brandon missed out on having his dad.
Courtney would have Mike wrapped around her finger, without even trying. He loved his little girl so much and I wonder just how protective he would have been with her.
Courtney talked about London again last night. I said, I would LOVE to go to London. Then I thought - would we have ever gone as a family if Mike was well? What vacations would we have taken? Instead, it's been 7 years since we took a REAL vacation (not a trip to see family, or advocate in Washington) but someplace to really get away and enjoy ourselves.
Courtney and I were discussing about when the last time it was that we went to mass for Christmas. I can't remember. Our aides (understandably so) don't come in on the major holidays so they can spend the day with their family. I miss going to Christmas Mass and I KNOW Mike does also. This was always his favorite holiday and I'm sure that is why I always have such a difficult time coping.
I move around like a robot as I try to make Christmas special for Mike and the kids. I have moments of enjoyment no doubt, but deep down the pain is always there.
I've been writing a blog piece for mariashriver.com every month now since June, but I'm having a difficult time coming up with something uplifting and inspiring right now. I banged one out for Thanksgiving, but that holiday doesn't hold as special a meaning for me as Christmas. I wrote a draft the other day and read it to Courtney. It sounded more depressing than uplifting, so now she's going to help me "revamp it" so it's fitting enough for marishriver.com. I don't want to sound really pathetic, even though the truth of the matter is that this is what Alzheimer's Disease does to families. On the flip side, when I get like this I revisit my own advise....things can always be worse.
I truly do appreciate all that I have been blessed with and will do the best I can to make this Christmas special.

Alzheimer's Gray

To lose someone you love to Alzheimer's feels worse than death to many families. Death is a decisive break, and afterwards the grieving process occupies its own domain. The territory is painful, to the point that many grieving survivors would rather follow their loved ones into the unknown after death. But Alzheimer's is a gray, ambiguous land where your loved one gradually fades away, with many false returns and defeated hopes. Death is considered a mercy compared to the tormented stranger who torments those who suffer through the disease with them.



By Deepak Chopra, M.D., F.A.C.P. and Rudolph Tanzi, Ph.D

Help Get Courtney on Ellen!!!!!

For anyone of my readers who does not know, we (The Henley's) are HUGE Ellen fans. Courtney started this "campaign" on Facebook two years ago, but it never fully got off the ground.
She is DESPERATE to meet Ellen and hopes she can help her fulfill a bunch of her "Bucket List" wishes... getting slimed, hosting Ellen's red carpet Oscar Special, zorbing to name a few. She noticed that many of Ellen's "non-celebrity" guests are people who made a unique attempt at campaigning to meet her, mostly through Facebook.
I am here today to see whether you can help me help her (she's going to kill me for doing this). As anyone knows, my kids have gone through hell and back as they have grown up caring for Mike. They have lost SO MUCH of their childhood, but they wouldn't change it for a second. They advocate with me, they help educate others and Courtney's life goal of becoming a film major was all inspired by her dad - with the end result being her making a movie about Mike's life and the true reality that is YOAD. She loves film/movies anyway and hopes to study in California one day.
I want to ask all my blog friends if they can take a moment and reach out to Ellen via her website
(ellen.warnerbros.com) - heck you can even ask some of YOUR friends and family to help the cause :)! I'm hoping if they get a few e-mails from across the USA and maybe even overseas (I know there are a few readers from the UK) , it may get the attention of a kind producer who can help Courtney fulfill her wish.
I know everyone has busy lives, especially now around the holidays. I TRULY appreciate your help and I hope one day Courtney will FINALLY get to meet Ellen!!!

Quick Update

When Mike's regular aide came back on Monday, he seemed to have turned a corner and is not gurgling/coughing as much. His breathing has slowed down and he seems a heck of alot better. This thoroughly explains why I always feel like I'm in a Catch 22 situation with her. She takes advantage of us, she's unprofessional and selfish, yet she seems to be the only one Mike feels comfortable with. I know she knows that, hence the reaosn why she acts the way she does with us. She's constantly quoting the bible and preaching passages, I would just wish she would "walk the walk".
Mike's sores are still not well, but at least his cough is getting better.

Thanksgiving Stress

For the last four days I've had a knot in my stomach, I haven't slept well and I've been an emotional wreck. I am trying to decide if Mike is in a downward spiral - OR- maybe I have been spending too much time at home with him. Surprisingly enough, I truly do not know which one of these scenarios is true.
I was happy when my boss decided to give me off on the Wed before Thanksgiving. This was an unexpected surprise and one in which I thought I would be thankful for. By the time Sunday night rolled around, I realized that the extra day was not so much of a blessing.
On Thanksgiving day, Mike awoke totally out of sorts. He was congested and he was moaning and VERY gurgly. His aide pounded his back as we always do, but this seemed to only make matters worse. He would cough, but he wouldn't open his mouth, therefore, nothing was being released. We decided to only give him fluids, as the hospice nurse always tells us this is the best thing to do to help loosen the mucus. Our aide left a little earlier than usual that day, and I attempted to give Mike something for dinner. That didn't go over well and he went to bed as uncomfortable as he woke up.
On Friday, our aide didn't show up AGAIN, and this time the agency claims they had no idea she wasn't coming in. Soooooo, no aide again. All that I had planned for Friday was now impossible as I needed to stay home to care for Mike. He hasn't done well for me for quite some time and coming off a bad day like Thanksgiving, this was not a good thing. He hardly drank or ate and by the end of the day he was pretty limp. Still gurgly, but no moaning, we ended the day.
On Saturday, we had out new Saturday aide and Mike ate and drank pretty well. He coughed alot throughout the day and seemed congested. His sores didn't look well either and I assumed it was because he basically went 2 days without much nutrition. He was gurgly again at bedtime and by this time my stomach was a mess. I was trying to figure out if this is what each day is like for Mike. I'm usually at work and I only get home after he's finished eating everything. Does he struggle like this each day? Was this something new? It seemed like I spent the entire day congratulating him for coughing and then at nighttime begging him to cough.
By the time yesterday rolled around I had 5 full days with Mike and I was emotionally and physically exhausted. I'm still not sure if this is the "norm" for him, or if he's got some sort of cold or congestion in his chest. His regular aide came in today, and she hadn't seen him since Thursday afternoon, so I will be curious to see what she says when I get home today.
Yesterday Courtney said to me, "mom, I think you just need a break" and I agreed 100%. I love Mike and care about him deeply, but after spending five full days with him, with no break, I am spent. This morning Elaine said she could tell he "wasn't himself" and seemed a little limp. Normally his arms are so contracted that you can barely move them, but today he was loose.
My mind races when I am alone with him and I see how he spends his days. I begin to question his "quality of life" and then of course, Courtney gets frustrated with me. She tells me I am reading too much into everything. What else is there to do?
I went to mass last night - it's been a while I'm sad to say. As I sat a looked up at the crucifix, my mind disappeared. Jesus was emaciated and suffering on the cross, much like Mike is at home. He's skin and bones right now and each and every day he suffers just to get through the day. I am NOT comparing Mike to Jesus, and honestly I'm not even sure why I brought that up, I guess only to say it was an emotional moment for me as we enter the Advent season.....At Thanksgiving we usually say what we're thankful for and this year my mom said "I'm glad we have Mike with us for another Thanksgiving and I hope we have him with us for another Christmas". I was taken back with that, as were the kids, but after the past five days, I begin to wonder...and worry.
LET GO, LET GOD.

Pre-Senilin 1

Mike and his family suffer from Familial Alzheimer's Disease and have been tested and proven to have the PS1 gene mutation. Scientifically, this has been written about this particular mutation:

The available clinical information suggests features broadly typical of Alzheimer's disease. Myoclonus was a particularly marked feature in the individuals on whom we have more detailed medical information. As with other chromosome 14-linked or PSEN1 mutation familial Alzheimer's disease pedigrees (Frommelt et al., 1991; Haltia et al., 1994; Lampe et al., 1994; Kennedy et al., 1995), the majority of the cases experienced seizures. As in two families with PSEN1 M139V mutations, myoclonus and seizures were a feature common to all affected individuals, with the myoclonus starting, on average, 3 years before the seizures (Fox et al., 1997). This appears to be a feature of younger onset familial Alzheimer's disease (Mayeux et al., 1985). - Professor M. N. Rossor, Dementia Research Group, Institute of Neurology, Queen Square, London WC1N 3BG, UK
In layman's terms I will write....it's HORRIFIC!
I attended our local candle lighting ceremony last night to commemorate those who are currently suffering from the disease, those who have already passed and those who are caring for them. I sat next to a lovely woman who described how she is just beginning this journey with
her mom. It's funny how I forget about all the things Mike used to do in the beginning of this disease. I guess as a defense mechanism, my mind only has room to deal with the here and now, and not hold on to all that has happened over the course of the last 10 years. We proceeded to discuss the issue of awareness and research - a hot topic for me. I have always felt and WILL always feel that the money is not allocated for research because people consider this an "old person's disease". Why waste time and money when their life expectancy is so short anyway.
The PS1 mutation proves something completely different. This is the mutation apparent in many Young Onset Alzheimer's patients. The mean age of onset is in the 30's, studies have proven it and Mike is living it. So where did this mutation begin?
Mike's mom was the first person in her family to develop Young Onset Alzheimer's Disease (YOAD). Her parents passed away from other illnesses, her mom died after her. Her great grandparents did not have any indication of this disease. So how did she develop it?
Through my networking, I began talking with a spouse who's wife was diagnosed at age 39, also with the PS1 mutation. HER parents are currently helping in her care. How did she develop this mutation?
I'm sure there are numerous cases like these out there, and I present the question about how and when they developed YOAD for one reason.... If you don't think this disease can't happen to you because your not old, or you don't have it in your family, think again! Neither one of those scenarios applied to them, yet here we are.
Are you scared, you should be. NO ONE IS SAFE. This disease does not discriminate and we need to make sure our loved ones do not suffer in vain. The mutations came out of no where in two otherwise healthy woman. Between the two families, there are 5 children who now have a 50/50 chance of inheriting the gene that causes the disease. This pattern will continue until money is made available so that research can be done and a cure can be found.
Not long ago I read The Thousand Mile Stare written by Gary Reiswig. His family has been torn apart by the number of members who have developed YOAD over the years and eventually passed away from the disease. Their courage and strength is amazing as they participate in research, even those currently not diagnosed, in the hope of ending this unpredictable ride that is Alzheimer's Disease.
I've said it many times and I will repeat it again, THERE BUT FOR THE GRACE OF GOD GO I.
All I ask is that you use this forum and my words to help make your friends, neighbors, co-workers and family members aware of YOAD. The more people who are aware, the more chance we have of raising our voices and making a difference. Yes, there are many horrible diseases out there, but this one is at the top of the list. I am saying this with complete confidence, even after I sat with my FIL as he suffered and eventually passed from stomach/esophagus/pancreatic/liver cancer and a dear friend who recently passed from ALS.
Memories are the essence of our being and our ability to communicate is one of our basic needs. Alzheimer's rips both of these away from our loved ones leaving only a shell.

Broken Record

That's what I feel like sometimes...a broken record.
Our regular aide was out for a week last week and about 2/3 of the time I had to run home twice during the day. I would get to work, leave to help get mike in bed, change his dressings, go back to work, and then an hour later head back home to help the substitute get Mike out of bed and once again change his dressings. The aide was out for 7 days and for four of those days, this was my routine. I was exhausted.
This past Saturday, Courtney was going into NYC. I drove her to the train station and I got home at 10 a.m. only to find out that the aide had not shown up yet. I called her number and only got voice mail (which was full) so I called the agency directly. As soon as the girl heard my name she said "OH MY GOD, MRS. HENLEY I AM SO SORRY, I FORGOT ELAINE CALLED OUT SICK YESTERDAY FOR TODAY AND I FORGOT TO CALL SOMEONE TO COVER". Needless to say I was not happy, for a variety of reasons. I proceeded to rush to get Mike washed, his sores cleaned and dressed and get him up in the chair. Thankfully my brother was available to help me transfer him. Had I known the aide wasn't going to come in, I would have planned differently.
In order to take the blame off themselves, the agency decided that they were going to pull our regular aide from Saturdays since she was very inconsistent on when she would be in. They explained that it's difficult to find someone on such short notice and since she was frequently taking off on Saturdays, they would pull her completely.
Now I will be dealing with the wrath once she finds out she off Saturdays. Even though she takes off when she wants, she's ALWAYS complaining about not having money. Today Courtney heard her yelling on the phone to someone (as she was changing Mike) that she hates her job and needs to find someplace else to work. Now if Mike knows what's going on, like she tells us all the time, what did he feel like as she screamed that in his face?
I am in a Catch-22 situation. On one hand I have an aide who can handle Mike on her own and use a hoyer by herself, but on the other hand, she is rude, stubborn and unreliable.
Since I had been transferring Mike so much lately, my shoulder, elbow and wrist are just killing me. Today I put a wrist brace on for support, but I'm still in pain. Home health aides need to be trained better because right now I'm not so sure how much help I am getting from them.

Josh Groban

Way back in March, for Mother's Day, Courtney and Brandon bought me two tickets to see Josh Groban. The concert was FINALLY last night. In a perfect world, I would have gone out for the night with Mike. A nice romantic evening - dinner and listening to the melodious voice of one VERY talented young man. As we know, the world is not perfect, but I had a great time with my very dear friend. This is one of those friends that you just now you're supposed to be friends with.

I met Connie way back when in 1983 when we worked in the same law firm. I wasn't too friendly with her while at that firm because shortly after I started, she left. Four years later a friend of mine was leaving her job to go on maternity leave and she asked if I was interested in taking over. It would mean that I would go from a very big law firm to an office with only the attorney and myself (while sharing space with two other attorneys). I went for an interview and to my surprise Connie had been working for the other attorney in that office. Weird huh, that she left the same law firm 4 years earlier and here we were, working in the same office again. We began to get friendlier here, but we still never had the "have to talk every day" kind of friendship. Connie got pregnant, then I got pregnant. She had her daughter in March, I had Courtney in September. She eventually left that job, but we kept in touch when she would take over for me when I went on vacation (she had been a stay at home mom at the time). She has had numerous jobs over the years, while I remained with the same attorney I had originally went to after I left that large firm. Twenty eight years later, we still remain friends.

I have found throughout my life that a true friend is not someone you need to have around 24/7, that's a High School thing. I've had friends over the years who I thought would remain with me through thick and thin, then after Mike was diagnosed, they disappeared. Connie did not. She was also one never to keep promises she couldn't keep. Whereas some "friends" would promise to come by for a visit, go take me for etc., Connie never made those promises, but she was always there for me whether it be just to listen or to cry with me when I needed that. We would go see our favorite psychic, John Edward hoping to hear messages from our family members who passed. We both believe that things happen for a reason and that there is definitely a higher power at work. The simple fact that Connie and I have remained true friends for all these years solidifies our belief that our friendship was just meant to be.

When Your Home is Not Your Own

Lately, Courtney and I have been struggling with the issues of other family members and their ability/inability to help us (Brandon is away at school and hasn't been affected by the recent craziness)
Way back when, after Mike and I gave birth to Courtney, my mom offered to take care of her when I went back to work. This worked out very well. Soon Courtney reached her one year birthday, and Mike and I began trying for a second child. We wanted to have our children close in age so the chances of them getting along better and becoming good friends would increase. The style of music, clothes, books, movies etc would all be the same. I gave birth to Brandon 20 months after Courtney was born, and my mom realized that it would be very difficult for her to take care of both children by herself. She asked if I could hire a mother's helper a few hours a day. I gladly agreed. Searching for a mother's helper who would work well with my mom was impossible. My mom felt they didn't work hard enough, didn't listen to her (she was, after all, the boss when I wasn't here), or they just plainly didn't care enough for Courtney and Brandon. After a few hires and fires, my mom decided that no one could help the way she wanted so she wound up caring for Courtney and Brandon by herself. When they started school full time, she still came by our house every day [our grandmother had ived with us as we were growing up. We knew her well, she wasn't someone we saw only on holidays. Grandma living with us was normal, so when my mom came to our home every day to be with the kids, I felt that it was a GOOD thing].
Then Mike was diagnosed with Alzheimer's. The kids were only 7 & 9 and I still had to work full time, especially since Mike was no longer able to work. My mom continued to come by every day. She did the wash for us, she made the kids lunches, picked them up from school when they were sick, kept track of their Dr.'s appts etc. She was a BIG help for me while I was trying to take care of Mike, the kids and run a house. Then Mike got bad enough and we needed to get an aide for him.
My mom had issues with every aide we had. They weren't doing their job, they didn't take care of Mike, they were always late, the food they brought for lunch smelled...and so on and so on (In fact my brother JUST complained tonight that the substitute aide that came today parked his car in my brother's spot on the street and told me that I had to tell him NOT to park there in the future!).
Courtney, Brandon and I have had to deal with family members and strangers in our home for the entire 10 years we have been caring for Mike.
Our home has never really been OUR HOME.
After 10 years, it's REALLY beginning to get to us. My mother has a difficult time getting around. She still comes to our house every day (yes, with BOTH kids in college now) to "help" but what she doesn't realize is that now I find that I'm taking care of her also. She has a difficult time getting into our house, so we have to get up early to help her into our house EVERYDAY. She brings her own laundry, which she can't carry anymore, so we have to run to her car to carry it in. She walks so slow, it's difficult just getting around her in the kitchen each morning so I can prepare Mike's meals and medicine. When we suggest that maybe they should not come over as frequently, she gets insulted. Her husband can barely walk due to spinal stenosis, yet she still makes him drive here everyday.
I try not to get too aggravated, because I KNOW there will be a day when she won't be around and I will miss her terribly. I love my mom dearly and I appreciate all she has done for Mike and I and the kids through the years, but she never seems to understand our frustration when she acts like our house is hers.
Let's not forget that my brother still lives with us and he has some major health issues. He recently found out he will probably need double knee replacement surgery, so any help we got from him in the past will be gone. He will be yet another family member sharing our home.
I'm sure there are some of you out there saying, "what is she crazy, I WISH I had family around to help". Like I said, don't get me wrong, I love them and appreciate all they have done, but some times it would be nice to be "just us".
Living with a loved one with Alzheimer's Disease is horrific, living with a loved one with Alzheimer's Disease in a home where there is no privacy makes it even worse.

We took our vows 23 years ago today....

Today Mike and I are married 23 years. I am having a tough day. Taking the past few weeks into consideration, I am having a terribly emotional day.

It's no doubt that I think back to exactly what we were doing 23 years ago today. Ironically, I remember being concerned that Mike wouldn't make it to the church on time because he was ALWAYS late. I had to count on his brothers and best man to get him there on time. On 10/28/88, it was about 65 degrees with a little bit of rain. I was upset that I couldn't take pictures of me and my bridesmaids outside in front of my favorite dogwood tree (the color at the time was amazing!). The photographer saw me staring out my front door and asked what was wrong, so I told him. I had forgotten all about that conversation for the bulk of the day until it came time for us to leave for church. As we were walking down our front walkway, the photographer stopped me so he could get a picture of me in front of the dogwood. I remember that when my brother-in-law did his reading at church, he would sniffle and his mustache would go up at an angle. When Mike and I lit our unity candle, he whispered "don't drip, don't drip" to me, but when it came out on our video, Mike sounded possessed. I remember crying so hard walking down the aisle with my dad I thought everyone would notice my quivering lip as I tried to hold in my tears. After giving me away, my dad stepped on my gown as he walked to the pew and as I turned toward Mike, my head wouldn't move.

Once at the venue I remember taking all those pictures. I even made our groomsmen take their shirts off for a funny picture (I know Mike's two brother were NOT happy, but Mike's friends were OK with it). We didn't have anything to eat for the cocktail hour, so we were starving when the reception came. Our first dace to "Follow You Follow Me" was very special and even now, when friends hear that song on the radio, they comment to me about it. It wasn't a "traditional" 1st dance song at the time. My niece got hit in the head with the microphone that they passed around the table for the video. My Aunt and Uncle (brother and sister) fought for the bouquet and garter (you heard me?!) We cut the cake and Mike was NOT nice. He gave a piece the size of the plate and I KNOW I was still chewing on it when they called me to do the dance with my dad. I didn't think I would ever make it through the dance - "Tangled Up Puppet" by Harry Chapin. At the end of the song, I don't know who was crying more, me or my dad. I wasn't even sure if my dad and I would do a special dance, since Mike didn't have his own mom to dance with (she had already been in a nursing home for 3 years by then). I didn't want Mike to feel bad, but true to his nature, he wouldn't NOT have me dance with my dad.

There are SO MANY more memories of that day, and the truth of the matter remains that Mike doesn't remember any of them. I woke up at 5:30 this morning and looked into Mike's vacant eyes and wished him a Happy Anniversary. It's our special day, but he will never remember.

Sores

Mike's sores seem to be getting worse. Having researched on line (which I know is a bad thing to do) I found out that sores are never really considered healed nor is their status downgraded. Basically if Mike had a Stage 3 bedsore and it seemed to look better, it would never be upgraded to a Stage 1 or 2. They can very easily turn back and that's exactly what they are doing. His shoulder which had been healed, is now so bad it's infected, as well as one on his thigh. The one on his bottom is so bad I can't even look at it anymore. As they were being cleaned yesterday, I had to give him morphine. I hate giving him morphine because to me personally, morphine = the end. I could not in good conscience, NOT give it to him, he was moaning terribly. Tylenol just wasn't going to cut it, so I gave him 1/2 of the dissolvable pill hospice had prescribed for him. This did not sit well with Courtney, but I just could not have Mike suffer.
I worry that this will be the first of many doses and that scares me.
I had to set my alarm again last night for every 2 hours so that I would make sure I was up to turn him so he would not spend any part of the night on his butt, yet you could never tell by the way his bottom looked today. I gave him another 1/2 of pill again today....at least there was no moaning.
These sores scare me. This is what Christopher Reeve passed away from and I'm sure he had excellent care 24/7.
I keep telling myself that I have done and will continue doing the best I can. I love Mike and I will make sure he does not suffer.

A Walk to Remember

Yesterday was such a beautiful day, we decided to take Mike for a walk. He LOVED the fall, as do I. Our 23rd wedding anniversary is Oct. 28th. The weather in the fall is beautiful: crisp, cool mornings, sunny, cool, windy days and cool nights. Not freezing, just enough to make you feel good.




Before yesterday, Mike had not been outside in 3 years!! Except for those occasional trips to the ER via ambulance, which don't even count. Since yesterday was sunny and warm, we decided to finally get him outside. Here are some pictures we took.





Pictured: Gail (my sister), Frank (my brother), Mike and I

Courtney, Gizmo and Mike

Mike and I

Family Weekend

This past weekend was "Family Weekend" at Quinnipiac. I arranged for our weekly aide to spend Saturday night with Mike so Courtney and I could attend. This weekend made me realize that this will be the last time I will be able to be away from home without one of the kids staying behind to help with Mike.

To begin with, instead of our aide arriving to work at 9am on Saturday, she got there at 9:50 - never apologizing.

For Sunday, I told my mom that she can come over about 8-8:30 in the morning (later than she normally does) because Elaine (our regular aide) would be there until our Sunday aide (Blanca) arrived. Well unbeknownst to me, Elaine told my mom she wanted her to be at the house by 7:30 and once my mom got there Elaine left. When Blanca arrived, Mike was saturated in urine and practically hanging off the bed. Blanca is so sweet, never says a bad word about anyone. She also has a difficult time speaking English. When I got home and my brother told me that Elaine washed Mike's clothes but left them for Blanca to fold, we explained to Blanca how Elaine told us she was "allergic" to folding wash. Elaine claims her doctor told her that the particles that fly through the air as you shake the wash before you fold make her sneeze - therefore she's allergic to folding wash. Blanca yelled out "That's bullsheet" (accent). When Elaine called up later to tell us she would have to take off today to take care of a matter with a deadline of today, Blanca yelled out "liar, liar" in the background.

Yes, I think Elaine is playing us for a fool, and I think she thinks she gets away with it, but she doesn't. I put up with all her "bullsheet" because the agencies cannot find an aide who is comfortable transferring Mike via hoyer. I call her out on quite a lot, but I have to pick my battles. Mike's well being is always priority!

Needless to say, after the way she took care of Mike this last time, I will not feel comfortable leaving him with her again.

On the plus side, we all had a good time visiting Brandon. Of course, Courtney was a little annoyed with me because once again I got emotional when all I saw was moms and dads. I couldn't help it. It's times like those that I'm shaken out of my "robotic routine" and see all we are missing as a family. There was just no way around it. I'm sure there were single parents there somewhere, I just didn't see them.

Not Sure How He Does It

I had to change the dressing on Mike's sores last night and today. I actually had to say a little prayer before I did to give myself strength. They look horrible. I cried the entire time and tried calming him by telling him I was trying to help him. They look worse than ever and I just don't know how he does it??!! How does he deal with that pain each and every single day? I give him Tylenol as needed, but every time they are cleaned out, packed and dressed, he winces, shakes and makes a sound that sounds like he's crying. I HATE IT!! I just can't imagine what he is feeling and there's no way for me to stop it. Hospice gave me Morphine to give him, but I know once he starts getting that, there's no turning back.
I have been in a funk the last few weeks. I have been feeling like I felt when Mike was first diagnosed. My heart aches for him and I wonder what he's thinking and feeling. I understand there needs to be suffering in the world so that people can truly appreciate it when things go well and they feel good. But how much suffering can one disease bring and how much suffering can one person take??? There but for the Grace of God.....

"S", Sores and Book

Mike had another "S" yesterday and it was pretty big (it lasted a long time). Courtney was with me, and I believe it was the first time she actually witnessed one. Once this happens, I need to give him medication so he doesn't get another, but the side affects of the medication is drowsiness. The "S" itself causes the person to be totally exhausted afterward, and then add medication to that, and Mike was out of it. Unfortunately, it was time for him to eat dinner. I tried giving him drink and food, but he just kept coughing. I decided to stop giving him anything, because I surely did not want him to aspirate. He went to bed last night without his usual dinner and drink. He's down to eating so little to begin with, it saddened me that he missed out on what he usually gets.
This morning, his sores didn't look well....still. The one on his thigh looked a little better, but the one on his shoulder that had pretty much healed is now open again and the one on his bottom looks bigger (although both Courtney and Elaine feel otherwise). Mike has had some congestion again and for the past 3 days, he hasn't been coughing it up. It's no wonder I don't sleep well when I have Mike gurgling next to me. The chest P/T we give him hasn't been helping and I'm not sure what's going on.
Last night, Courtney and I met had our first meeting about our book. We met with the person who will be writing it and we're so glad she's willing to work with us on something so important. For YEARS I have been hearing "you should write a book about this", well now it looks like we're on our way. It will not happen overnight since we both have full time jobs and other commitments, but the fact that we spoke about the direction it will go and what we need to do to propose the idea etc., is a HUGE step in the right direction. I am SO READY for the world to know about Mike and his struggles, his strength and his bravery and the way in which our children have overcome this heartache. This could be my ultimate advocacy project yet!!!

When All Else Fails...Laugh

I just have to laugh.
Since our friends held the fundraiser for us this is what has happened:
- I had to repay the bulk of what I owed to Mike's Home Health Agency
- The pipe under our kitchen sink broke and had to be replaced
- The kid's car needed a muffler system/etc
- Our dishwasher broke
- My car had a flat tire and required 2 new tires
- Brandon was injured and has needed continous dental work
- Our refrigerator broke (on Monday)
- A pipe burst in our basement (last night causing the basement to flood and will require us
to completely empty out all it's contents and drain water)
God always makes sure we have JUST ENOUGH to take care of what we need, but he doesn't want me to be comfortable enough to have a cushion.
I don't want to say things can't get worse because I KNOW they can, but seriosuly can I get a small break???

Missing Time Away

I find myself growing very tired more often. Years ago, I remember reading the blog of a woman who's both husband and daughter were diagnosed with Young Onset Alzheimer's. She cared for her husband at home for 12 years and I remember thinking, "that poor woman she must be so tired". Well next April, Mike will be sick for 11 years and I already know what she must have felt like.
It doesn't take much to upset our routine. Brandon's injury to his tooth at school has already been difficult to deal with. Financially - we're already up to $900.00 for the dentist and that does NOT include the travel expenses of Brandon going back and forth to Connecticut. Then there's the time involved - whether he takes the train home (which could take him 6 hours depending on the schedules and whether he catches the right train) or I take him back and forth (a round trip takes about 5 hours), we are EXHAUSTED. It takes so much time out of my already depleted schedule and it takes time away from his coursework and/or classes. Finally, for Brandon there is also the physical pain of dealing with a tooth broken in half under his gum line - trying to eat without using his front teeth, trying to clean his teeth in order to prevent infection and the daily annoyance of it all. This has been difficult to deal with, but it MUST be done in order to try to save Brandon's tooth.
The there's the fact that caring for Mike has become even more tedious. I don't want that to sound bad, but the truth is the truth. It now takes about an hour (on a good morning) to clean him and dress his wounds. There are the dreaded mornings when after he's been cleaned and the wounds all dressed, that he goes to the bathroom and we have to start all over again. We all do it because we love Mike and want him to be at home, but the fact of the matter remains is that is more and more time consuming.
Then I have the constant struggle within me as to whether we are doing this for ourselves and if in fact Mike is also getting tired. Does he struggle each day for US? Is he dealing with the pain of 4 bedsores because he doesn't want to disappoint us?
The fact that neither myself and my children have had a REAL vacation together in 5 years may add to the tension and struggle. Courtney and Brandon have both been lucky enough to have taken short trips with their school and of course Courtney went to London (for school) for 5 weeks. They need that break to get away from it all. For me, I haven't been so lucky. I've taken extended weekends for graduations, move-ins etc., but not REAL VACATIONS!!! A normal healthy family needs some respite time away, to clear the mind and rejuvenate themselves. A family dealing with a health crisis definitely deserves a vacation even more, but quite often, it's just not possible. I dream about the day when I can lay on the beach, swing in a hammock, read a book, have a drink and DO NOTHING. The guilt that those dreams bring is immeasurable because I know the only time I will be able to experience a true vacation will be when Mike has left us. I think there should be some sort of respite project in place for 24/7 caregivers (of any ill adult or child) so they can get away to recharge their batteries. We did that a few times before Mike's illness progressed and I had my salary cut. I can tell you first hand how much a vacation helps the body, mind and soul. Even though we had missed Mike terribly, when we came back we were all better caregivers. I came home to the normal routine, but I had a much needed break and that made such a difference. Then I sit and wonder - even if I could afford a real vacation, would I have peace of mind while I was away? Probably not, I would just be worrying about Mike. Ideally it would be great to go away and be able to leave your loved one in the hands of capable, professional nurses and aides 24/7 so that peace of mind can be attained. Unfortunately, there is no program around that would provide this sort of respite and that's sad. Keeping Mike at home is my choice and I wouldn't change it for the world, but it would be so nice to escape every now and then.

Drowning

Too much going on at once.
Brandon's tooth is worse than they originally thought. It's cracked in half under his gum line, so now begins the careful routine of keeping the area clean. If anything gets lodged in between the crack, infection can set in..root canal needed...then despite of it all, he may lose the tooth. Add that to Brandon's already burdened shoulders and he's beginning to break down. Mike, heavy school load, trying to find his way around college (not literally) and now an injury, and he's understandably so, overwhelmed. He's questioning his ability to continue with his major.
Mike's sores on his sides seem like they're improving, but the one on his bottom looks like it's getting worse..fast. It breaks my heart to hear him moan sometimes as we clean it.
Brandon was in a minor car accident in January and we were recently served with court papers indicating that we are being sued by the occupant in the other car (the one that sped up so he couldn't merge therefor resulting in the accident). The night of the accident there was no ambulance and there was no indication in the police report of any injuries so this came as a HUGE shock. This is also on Brandon's mind, since he was the one driving at the time.
Mike's regular aide is out yesterday, today and tomorrow, so it's more running back and forth for me during the day to help the substitute get Mike in and out of bed, all the while worrying how Mike is responding to a different person at home with him.
In the last 4 days, I have had an average of 3-4 hours a sleep each night. It's all beginning to wear on me and I'm having a difficult time seeing the light at the end of the tunnel.

Late Night Call

Mike is still holding his own. One of his sores on his shoulder FINALLY seems to have healed, although the one on his bottom looks like it got worse. There are even moments when it sounds as though Mike is moaning. I hate that. He's been OK with Tylenol for now.
We had a surprise visit from Tom and Noelle. Tom comes by all the time, but it was such a treat to see Noelle also. They were out enjoying a day just the two of them and they stopped by on their travels just to say "HI". That's exactly what friendship is about.
Brandon called about an hour ago to tell me he was heading to the Health Center at school. Seems as though his friend was quite animated in telling a story and Brandon's face happened to be in the way. Brandon was at first concerned about his nose, then realized that his front left tooth was pushed back at a 45 degree angle. YIKES!!! The nurse at the school couldn't do anything, so they sent him to the ER where they have emergency dental staff on call. Hopefully they will just put it back in place and it will heal.
Never a dull moment, but thankful it wasn't worse!

Sorry...

Thank you Kathy for asking, it's been so tiring I forgot to write on the blog (I posted on FaceBook).
Mike came home last Friday. The entire weekend was crazy with doctors, nurses, social workers and priests coming over - all routine for admitting a patient to Hospice. I forgot they had to treat this as a new admit and we had to do everything all over again. Then the Walk was Saturday, which made it even more crazy.
Since Mike has been home he's been up quite a few nights with a cough. It's a productive cough, and he tries so hard to get stuff out, but he can never quite get it up. I mentioned it to his nurse and she told me to just continue using the nebulizer and oxygen. She did confirm a slight congestion in his upper airways, but didn't prescribe anything right now. The two of us have had quite a few nights with little sleep, which lead Mike to have an "S" yesterday morning. He's been getting those a little more frequently than in the past - which I HATE!!! I would say it's been happening at least twice a month for about 6 months now. They aren't big, but "S's" nonetheless. Infection and lack of sleep can usually bring those on, we'll wait and see. If nothing changes, the doctor may have to increase the dose of the medicine Mike takes for them.
Brandon is back at school, and from what I hear from him, he's loving it! Courtney started classes also and is thrilled she will begin working with the cameras and filming actual short movies this year. Finally....she gets to do the hands on filming she's wanted for years. She also started her screenwriting class, so if anyone has any good ideas, send them our way :)!
Thank you again to everyone for your prayers. They keep us strong.

Walk to End Alzheimer's

Today was our Long Island Chapter's Walk to End Alzheimer's.
Courtney walked with her friends.
Brandon walked with his friends.
I walked alone.
My friends who have walked in the past could not make it today, and for the first time in MANY years, I walked by myself. I wasn't really sad, because I knew I had many people with me in spirit. I may not have had a friend physically walking next to me, but I had their love and support with me. I also realized that this walk symbolized my future, the kids going their own way, me on my own.
This year the Alzheimer's Association had a new feature for the Walk. Upon entering the walk site, each walker was given a flower pinwheel. Purple symbolized those who LOST someone to the disease, yellow, for those CARING for someone with the disease and blue for those SUFFERING from Alzheimer's Disease. We could write our thoughts, memories or prayers on them and as we began our walk, we handed them to volunteers who in turn "planted" them so when the walkers came back, the garden would be in full bloom
The picture is of the Promise Garden at our walk. It was beautiful!

Red Tape

Ideally, I would like Mike to stay in the hospital for 24 hours after he eats to make sure there is no more throwing up or bloody stools. He started eating his meals today, which would mean I would want to bring him home tomorrow......BUT Hospice just informed me that they have a new policy. The hospice doctor has to examine Mike within 48 hours for him to be placed back on hospice, and if Mike doesn't come home tomorrow MORNING, the doctor will not be available again until Monday. If the doctor doesn't examine him and approve the admission back onto hospice, Mike will NOT have his aide on Sunday!
So I have two choices: have Mike discharged tomorrow sometime (morning cannot be guaranteed). If he doesn't come home before 1:00, then we won't have help on Sunday....OR, have him stay in the hospital over the weekend and have him discharged on Monday.
Why can't ANYTHING be easy??? I want him home, and could have him home tomorrow, but the discharge process at the hospital is usually a nightmare. In the past, have gone up there at 9 a.m. and only gotten home with Mike at 4-5:00.
This disease CONSTANTLY leaves me at the mercy of others. I have no control and I HATE IT!!!

Update

Mike remains in the hospital and unfortunately I believe he will be discharged without us ever knowing what caused him to throw up blood.
The GI doctors don't want to scope him because of his weakened state. While I understand their concern, it doesn't help me fine out the cause of the bleeding. His doctor told me today that he may come home tomorrow, but he JUST started eating tonight. I want to make sure he can tolerate the food he takes in before he comes home. I don't want to bring him home thinking that all is OK, only to have him throwing up again. I also noticed today that Mike's stool is thick and black. While I know this is not the normal thing to share on my blog, I apologize, but I share everything in the name of awareness. In looking up reasons why this may happen, GI bleeding was mentioned again. I noticed it yesterday also but thought it was a fluke. He passed the same stool today, so I will definitely be questioning that tomorrow.
On the positive side, he looks well and seems MUCH MORE relaxed than he did when he went in on Sunday. My goal has ALWAYS been to keep Mike comfortable and I believe that we succeeded with this hospitalization. I look forward to having Mike back at home again where he belongs. Thank you again for all your good wishes and prayers.

Mike in Hospital

You ALL know that I HATED taking Mike to the hospital. I HATED that he usually left with different problems than he went in for. Unfortunately, last night I had to take him to the ER and he has since been admitted.
He had a fever on Saturday, but otherwise seemed OK. Yesterday he ate and drank fine, but around 7:30 he started throwing up every 15 minutes and it was a dark liquid, almost black in color. My first and immediate concern was that he was bleeding internally. The last time he had thrown up like that, with that color was when he had to have emergency surgery to remove an infected, bleeding gall bladder filled with stones. I called Hospice and they suggested a suppository to help alleviate the nauseousness. It didn't work, and he kept throwing up. I knew something was wrong, so I called an ambulance.
He was admitted with a POSSIBLE bleeding ulcer. They will be scoping him to see what's going on and they've put him on an IV with something to coat his stomach. Courtney and I left the hospital at 4:30 a.m. and will heading back there shortly. Three hours sleep...not so bad.
A couple of things make this even more unfortunate. First, this weekend Brandon came back (on his own) to surprise us. He will now have to take the train back to college with this on his mind. Second, as we sat in the emergency room watching Sunday turn to Monday, Courtney "celebrated" her birthday. She spent the first few hours of her 20th birthday in the hospital with Mike.
I thought we were past all this. I could NOT consciously NOT treat Mike if he has something that can be treated. He had been written off many years ago by so many professionals and had we listened to them, Mike wouldn't be here. If this was a decline due to Alzheimer's and a result from it, it would be a different story...but throwing up blood wasn't something I could ignore and not treat. Please pray for our strength.

Brandon at College

This past week we took Brandon up to Connecticut to Quinnipiac University as he begins his
long road ahead to becomming a physical therapist.
The school managed the move-in with perfection and I was thrilled when I didn't need to do anything. We were welcomed to Brandon's dorm building by about 20-25 upperclassman who completely unloaded our van and carried all our boxes and supplies into Brandon's room. I savored every moment because I know this ritual is only for Freshman.
The weather was beautiful. Brandon's friend from high school has a room in the building right next to his. We all had lunch together and then Courtney and I left for our trip home. We decided to take the ferry from Bridgeport to Port Jefferson and it was absolutely beautiful.
I pray Brandon will be OK and not homesick...I'm sure he will be just fine.




The picture is of Brandon in front of the University's mascot... the Bobcat.

Fundraiser with Love

This past Saturday night, some of Mike's friends from High School and Grade School arranged for a fundraiser for us to help with our overdue medical bills and health insurance. Unbeknownst to me, our dear friend - our angel Tom - had been in touch with Courtney and Brandon to arrange the date and get people's names to invite. I was only told about it last month and I was extremely shocked. Of course I was emotional and quite humbled. The fact that these men, with jobs, houses, children and commitments, took the time and effort to make this happen was almost unbelieveable to me. I also didn't find out until that night that there was a "silent" partner in this who paid for all the supplies, food and beverages so that our family would get 100% of the proceeds. To me, this is the ultimate gift. The entire time he did not want to be known, he donated so much without the desire to be in the spotlight. It was only AFTER I took to the microphone and thanked all our friends that I was introduced to this kind, kind man.


The fundraiser came at a perfect time. Tom's original goal was to raise enough money for Courtney and I to have health insurance for a year. Then the week before the fundraiser, I got notification from the home health agency that if I didn't pay all or a portion of the $15,000.00 I owed them, they would have to stop sending Mike's aide. While I completely understood their point of view, I found myself unable to pay the $1,200/month Medicaid felt I could afford (when calculating our "overage", they take net salary, not gross and they do not take other expenses into account).
The best part of the night was seeing friends I haven't seen in years. My best friend from High School, our Best Man, Brandon's Godfather, a girl I used to work with at Friendly's while I was in high school and Mike's friends from GRADE SCHOOL. It also amazed me that people we never even met met were coming together to help us.
Mike's friend Steve, one of the men who arranged this night, told me a story that made me understand Mike just a little bit more. Steve and Mike were friends in grade school. Steve's mom was blind and he told me that Mike's mom would come over frequently to visit with her. Mostly, to just sit and talk, keep her company or help her in any way she could. The apple doesn't fall far from the tree. This is exactly what Mike was like when he was well. How sad that two people who gave so much of themselves developed such a hideous disease that made them both alienated by their own friends "who just couldn't handle seeing them this way".
The evening was an amazing, emotional and fun time for everyone. I was touched by all that was done for us, and everyone else felt good for being able to DO for us.
I will never be able to properly thank Tom, Steve, Ed and Rob for all their months of work. I pray one day I will be given the opportunity and means to help someone else.

5th Annual Lemonade Stand

Well, it was that time of year again...time for our annual Lemonade and "Yummy" sale with
all proceeds going to the Alzheimer's Association.
Unfortunately, this year we did NOT pass our goal. Each year we try to surpoass the amount we did the year before, and quite honestly, I'm assuming the recession hit us as much as anyone else. Courtney was disappointed, but as we told all our customers yesterday, every little bit helps!

With Courtney not returning to NY until the day before the sale, it was up to me to do the baking. On Thursday, I baked 8 dozen cupcakes
and 3 boxes of brownies. Courtney made the monkey bread when she got home on Friday.

Speaking of Courtney getting home, it couldn't have come too soon for me. She was lucky to have 5 great weeks in London, but wouldn't you know it, the last week there, riots broke out. I was quite concerned, even though she constantly reassured me they weren't near her. When people go crazy like that for no reason, you never know what can happen. I'm just SO GLAD that she's home safe and sound!

As one comes, it will soon be time for the other to go. Brandon will be leaving for college on August 24th....not too far away. In true male form, he has not done anything to get ready. He has not packed anything, nor looked through any of Courtney's stuff to see what he can use. Ah yes, Courtney will be transferring BACK to Hofstra. Yes. I feel so bad for her that the school she dreamed of going to (Fordham) disappointed her and she hated it there. She made a very smart choice and decided to head back to Hofstra, where she has more friends and can work hands on in her major. She will be living at home with us, not dorming as she had done the first 2 years of college. I know she was VERY concerned about leaving me once Brandon went away to school, and I tried my best to make sure that she was not staying close for that reason. She seems happy and content with her decision and for that I am happy for her. It doesn't take away my disappointment that Fordham did not live up to her expectations in any way.

Mike is STILL battling the same sores. He has good days and bad days. I won't say anything more because I truly believe I jinx things sometimes.

Me, I'm stretched to my limites. My fingers and wrists have been hurting me ALOT lately, and I know it's from transferring Mike onto the bed at night. I'm sure I will eventually suffer from arthritis somewhere down the line.

I am talking to the journalist who wrote the story about us in Newsady on collaborating on a book. She seems excited about the idea, so we'll see where it goes.

I hope to keep everyone updated, but I know the next few weeks will be C-R-A-Z-Y!!

Bed Sores....I HATE them!

This weekend, Mike had a sore on his buttocks that did not look good to me. So all weekend, I was trying to keep him off of it, to relieve the pressure. I was very careful (or so I thought) to shift him frequently so as not to compromise the sores on his thighs. Well, when he woke up today the sores on each side, as well as the one that was almost all healed on his shoulder were bleeding and looked worse. His aide, who had been out the weekend, started yelling at ME for not caring about Mike. How could I do this to him....Is this what happens when she's not there? Why does he even bother?! So, in addition to feeling bad enough on my own, I have someone making me feel even worse.
Common sense tells me that no matter what ANYONE does, Mike's health is very fragile. We give him THE best care humanly possible, yet the sores can still get worse. I know all this, but I can't help but feel guilty that because I tried to keep him off his bottom, the other sores got worse as a result.

It's Been a While

I just realized how long it's been since I posted. WOW.
Let's see, Courtney will be coming home from England next Friday. I can't believe how fast it went. She had classes three days a week, and the other time was for her to do with what she wanted. She did so much, but still didn't get to do all that she wanted to. I was living vicariously through her and had a great time!
Brandon will be going away to school in two weeks. He will be attending Quinnipiac University in Connecticut studying physical therapy. He's been very quiet lately and when I ask if he's nervous, he says "Of course". I think he's more concerned about being away from Mike.
Our Sunday aide was away for 5 weeks and that was hard. She will be back tomorrow and we're all thrilled.
Mike's friends from grade school and high school are throwing us a benefit on 8/20. They were apparenly planning this for months, but I just found out about it - they needed friends/co-workers info to send invitations. It is a humbling experience and it says ALOT about who Mike was as a person. I don't mean to speak about him in the past tense, it's just that Alzheimer's has destroyed the person he once was. These friends, some of which we haven't seen in like 20-30 years, think enough of Mike and care enough about our situation, to dedicate their time and energy to making the event a success. It couldn't come at a better time, since social services called me last week and told me they may have to discontinue services because I owe them too much money. No services - no aide. No aide - no work for me. No work for me - no income. No income - no house. After I got that call, I made sure they all knew how especially thankful I am that they are doing this.
My niece came in from PA for a few days. Courtney and she were supposed to go to the NKOTBSB (New Kids on The Block/Backstreet Boys) concert in June, but they moved the date to last weekend and Courtney was still in England. I went with my niece and we had a great time. My ears were ringing for days afterward.
Maria Shriver sent me a shout out on Twitter and Ellen DeGeneres sent her love (in response to my blog post on marishriver.com wherein I explained how laughter has helped us get through the toughest days). It was surreal - I actually took a picture of the screen.
Mike's sores are still there and the one on his bottom is beginning to look bad to me. I have been concerned about it for a week or so, but his aide kept telling me I was crazy. It's been bleeding a bit more and it's just SO CLOSE to his tail bone. He still has the other two on each of his sides, so no matter where we turn him, he's still resting on a sore. He's had them for SO long!
I had just told our aide to request more chucks (cloth pads we put under Mike) from hospice because the ones we have are shredding. Today the doorbell rang and it was Betsy's husband. He was dropping off chucks that he had from when Betsy was sick. Coincidence...I think not. Thank you Betsy!
That's my catch-up. Hope everyone is doing well.

So Thin

Every once in a while, I will see Mike like I haven't seen him before. Yes, I am with him every day and I'm not blinded as to his decline. Tonight though, he just looked and felt really thin. My thumb and middle finger can wrap around his ankle. When I rub his back, I feel his spine. His shoulders are all bones. His arms are like match sticks. I see him every day, but only sometimes do I really pay attention. I'm usually so busy turning him, rolling him, lifting him, positioning him, that I just go through the motions without noticing. But tonight I noticed and it's heartbreaking. When he used to hold my hand, his was so much larger than mine - I felt safe and connected. Now, his hands are so tiny, his fingers so small. His body is slowly disappearing, fading away from us just like his mind.

Happy Traveller

Courtney has been in London for 5 days now and she's having a blast. She's gotten to see: Big Ben, Trifalgor Square, Picadilly Circus, Buckingham Palace, Kings Cross (and Platform 9 3/4 - yay Harry Potter fans!), and the London Eye. She hasn't gone on it yet, as each time she went it was sold out. She plans on going on Thursday before she attends the midnight premier of the very last Harry Potter movie ever - and she is THRILLED beyond belief that she will be seeing it in London!

Her actual classes start today, so now the actual fun (not) begins. I'm sure she'll do fine and still have time off to explore.

Betsy's wake was Friday and it was quite emotional. There as a line out the door and standing room only. The Deacon who said the prayer was a personal friend and he did an amazing job. He asked people to yell out words or stories that best reflected Betsy and they were all perfect. I couldn't come up with anything different, until I was driving home. I didn't get to share it there, but I thought I would share it here.

When Mike got sick, Betsy took charge. She arranged so much for us: having our living room painted, having dinners delivered and prayers said. She would mail cards every now and then just to let me know that she was thinking of me and cared how I was. Then she got sick, yet she STILL would bring me dinners. One night, Tom (her husband) rang our doorbell. She was not able to walk and she made him bring us dinner. When I asked him quite shockingly, what he was doing, he said, "You know Betsy. She's not happy unless she's helping someone".

That's the type of person she was and that's what I didn't get to share that night. We should all have a friend like Betsy.

Courtney In London

Courtney landed safely today in London for a 5 week study abroad program studying the films of Alfred Hithcock. We have been extremely blessed to have been able to borrow this money in order to make this happen. It's a one in a lifetime chance, that I would have hated for her to miss.
She was extremely nervous about flying on her own AND being away from Mike for 5 weeks. That fear of being away became even more intense after our friend Betsy passed away. Her son was away at Boy Scout camp when she passed and Courtney's mind went into overdrive. Once again I explained to her that Mike would have NEVER wanted her to pass up an opportunity like this, and that we need to go on living our lives. Mike has been sick for ten years. Imagine if we didn't do anything during that time because we "were afraid" something would happen. We have no control, we just have to have faith.
She got in today when her other three roomates got in last night (they are randomly picked to room together by the school). Apparently, the roomates partied so hard and were so loud, the apartment management locked the terrace so they cannot use it anymore. Courtney said it's gorgeous, but she will never get to go out on it because her three roomates took advantage on their first night in London. She's also in a room with girls who brag about doing ecstacy and acid. I suggested that Courtney see if she can switch rooms. I do NOT want her to be around that stuff and I want her to have a good time. While she's watching every penny (or should I say pound) she spends, her trouble maker roomate is bragging about maxing out her dad's credit card. Talk about being at opposite ends of the spectrum!

Thank You Linda

Two weeks ago I went to visit my friend Betsy. She was a guiding force behind a lot of the help were received over the years. I was contemplating going to see her again this weekend, but I thought about all I had already done (and how tired I was from it) and all I still had left to do. I thought that maybe I could just rest today.
Then last night I caught up on my friend Linda's blog. She had an entry about a friend of hers and how she came across his phone message from a year ago. Life happens and she got busy and realized she never called him back. Shortly thereafter, she found out he passed away. She never got to return that call.
After readng that I decided I was going to see Betsy today no matter what. I saw it as a "sign". Another friend had also visited her on Saturday and she said Betsy was not doing well. I made the 45 minutes drive this morning with Courtney. When I got to her room, her husband was there, with his stuff all around from being camped out overnight. When I hugged Betsy and gave her a kiss, I realized her hands were freezing. Courtney and I rubbed them with lotion but no matter what we did, her hands were just so cold. I asked her husband to check her feet, and when he realized they were also so cold, he put socks on them and extra blankets. We sat with her for about an hour, I held her hand the entire time, letting her know I was there. She made a few sounds when she saw us and when we left, her other friend said it was her way of letting us know that she knew we were there. Her husband walked us out and we went home and went about our day.
I got a call from Betsy's husband a few hours ago, telling me that she had passed away shortly after we left her.
Please DO NOT always count on tomorrow - it may never come, and an opportunity you thought you would have, may never come to be. Thank you Linda for sharing your story and helping me make my decision to go out and see my friend.
Rest in Peace Betsy. Your spirit, friendship and generosity will always be remembered.

We Love Ellen!!!

Last night Brandon was at his friend's graduation party, so Courtney and I had free reign of the TV. Believe it or not, with hundreds of channels on cable, there was NOTHING on. So... we had an "Ellen" marathon. We try to watch her show every day to get our daily dose of laughter, but there are MANY days we don't get to it, so we record it. Well...our days are often busy and unpredictable, so we have A LOT to catch up on.
This is a picture of just some of the Ellen's we had to catch up on. Needless to say, we went to bed happy. We LOVE Ellen!!!

What's New With Us

So, since the last post....
Courtney went to the dentist the next day and was told she had a wicked cavity - something unknown to both my kids. The dentist assured her it was because it was her last tooth in the back and she couldn't brush it well.. He cleaned out the decay and put medication in it with a temporary filling on top. He explained that this should last her the 5 weeks she will be away in England. When she returns, he will fill it. (I'm not sure if I had mentioned that Courtney will be studying abroad in the U.K for 5 weeks, courtesy of a loan from Mike's Uncle. He offered years ago in case she ever had the opportunity, so when it came up, we took him up on the offer. She will be studying the films of Alfred Hitchcock. She is a nervous flyer and is anxious about being away from all of us, especially Mike for such a long period of time. I truly hope she takes advantage of this wonderful experience and doesn't worry too much). Courtney leaves next Wed. 7/6 and there's so much to still get done.
Two of Mike's sores seem to be healing and Courtney and Elaine are very proud - as they should be. They have been so diligent in caring for them. They can't wait to show Mike's hospice nurse, but she seems to have disappeared. She went on vacation for one week, then we were told (in secret) that she was hospitalized, but it's now been 4 weeks and still no word. We have a substitute nurse coming who Courtney seems to really like.
I was able to get Courtney and Brandon a used car (1991 Ford Probe) from a woman I met through Facebook after our story appeared in Newsday. My heart breaks for her because she just lost her 23 year old son to Pulmonary Hypertension and her mom passed shortly before him. Her surviving son inherited his grandmother's car, so we purchased his car for a VERY reasonable amount. I'm glad the kids have their own transportation, although I am nervous about the fact that this car doesn't have air bags. It's weird getting used to them going here and there "just like that" because they can, although I am, admittedly so, still nervous about them driving on the parkway. Almost every day there's another story about another fatality.
Mike's aide, Elaine is still with us. I'm not sure what her rumbling that day was about, and it makes me nervous about what could happen in the future.
Mike's Sunday aide, a lovely woman named Blanca, will be going away for a month to visit her family in El Salvador. We will miss her terribly! I am happy for her because he hasn't been "home" in two years, but she helps us so much and her absence will be missed. It doesn't help that she will be away for almost the same time as Courtney. You'd better believe that we'll be celebrating when they both get back!!

Father's Day 2011

Father's Day is always bittersweet. Mike is physically here with us, but that's it. How do you
"celebrate" the day? What do you buy someone who is practically bed bound? We can't take Mike out to dinner, or BBQ for him. Our day was very subdued. Courtney and I ran to the supermarket, but the rest of the day we just stayed home. We made Mike a T-shirt with the most recent picture of all of us and wrote on it "Happy Father's Day". We read him our cards and basically stayed close to him for the day.
Staying home was somewhat productive. Courtney and I had a heart to heart about college. She may be making some changes, and I helped her sort out the process and weigh the pro's and con's. I made MY DAD'S famous homemade potato salad in his memory - and it was enjoyed by all.

Right after the kids went up to bed, Brandon came back down and asked if he could talk to me - by now it's about 11:30 p.m. We proceeded to talk (or should I say cry) for the next hour. He broke my heart as he expressed to me his sadness at feeling like he never got to know his dad. I have a picture of him and Mike on the fridge at a Yankee game (before Mike got sick), and Brandon tells me when he looks at it, he's comforted by the fact that it's clear he enjoyed his time with Mike. Remember, my children were only 7 & 9 when Mike was diagnosed. Think about how much you can remember before that time in your life. Not much, so beside not having his dad around during his teen years, he doesn't even remember him when he was younger. As a parent, it broke my heart that I couldn't fix the situation. He's also very concerned that something will happen to Mike when he goes away to school. No child should ever have to worry about these things!

I lost alot of sleep last night as the last 10 years replayed in my mind. We all lost out on SO MUCH. When I woke up, I was tired and emotional. Then, after she ate breakfast, Courtney felt her one tooth chip. It's a molar or wisdom tooth, not sure which, but she panicked (this after we spent one night discussing the common denominator in Young Onset Alzheimer's patients being bad teeth). I tried to calm her fears, but she is beside herself. The fear of the unknown is only part of it, she doesn't want to deal with the pain if they have to pull it. Then right after this happened and I was ready to walk out the door, Mike's aide proceeds to tell me that she's not sure what's she doing, because the home health agency she works for does not give her sick time. Everytime she goes to the doctor (which has been many recently) she loses time from work - which she can't afford. SO, does this mean she may leave us?

As I walk out my door to work, I think HAPPY MONDAY! How many other woman deal with these three potentially HUGE issues before they leave for the day? How am I supposed to concentrate once I get to work?

Deep breath.....one day at a time......no, one hour at a time.

The picture was taken of Mike this morning. Each day I wake up, this is what I see - Mike's face, a palm cross and the "footprints" poem.

Perfect Analogy

This week has been a particularly difficult week for me. It's been emotional and challenging. I felt like I was a fish swimming against the tide. I struggled to go forward, but with each attempt, I kept getting pulled under.

I was speaking to our social worker today and broke down as she was trying to help me through a problem. She asked me if I watched cartoons. I was never a cartoon person, but Mike was and I've seen the classics over the years. She asked if I ever saw the Bugs Bunny episode where he is sleep walking in the construction zone. He would walk a little bit and just as it seemed as if he was about to fall, a plank of wood would appear and then another and another. He walked until he got to the end of one, and then another appeared. He never fell, he remained standing while being saved by the planks of wood.

She told me that I was Bugs Bunny. I have a guardian angel who always seems to be there for me with a plank of wood just as I needed it.

Simple, yet surprisingly appropriate.....

What's Up Doc!

My Dear Friend Betsy

Today I went to visit my friend Betsy. To say it was an emotional visit would be an understatement. I did all I could to stay strong and not cry, but three times I couldn't help it. Once when I saw her (the nurse had wheeled her away so thankfully she didn't see me cry), the second when she read the card I gave her and SHE started crying, and lastly, when she played inspirational music on her iPod.
I met Betsy years ago, when our children went to the same school. She was the mom who headed up all the fundraisers, she was a den mother and extremely involved in both the Boy Scouts and our church. In fact for the longest time, whenever I mentioned Betsy's name to my mom, she would say, "oh yeah, she's the tall lady in the Dr. Seuss hat" (her ploy in grabbing family's attention during fund raising events).

When Mike was diagnosed, she stepped into high gear. She got all the moms together from the school and made sure we had dinner delivered once a week (our Angel Dinners), and as her boys got older, they went to a different Catholic school which had a service club that helped families with extenuating circumstances. She made arrangements for our living room to be painted. Throughout the years, I would get "Thinking of You" cards from her giving me hope and inspiration. One night her and her boys showed up at my home with what looked like a huge scarf. She hand crocheted us a "prayer shawl" to wrap around all of us so we could pray together. Even after she became ill, her husband delivered food to us and when I asked why, he said, "You know Betsy, she's happy when she's helping others".

Yes, that's Betsy.

A few years ago, she was diagnosed with PLS - a slow progressing "cousin" of ALS. Each time I saw her, I noticed her decline. First, her trouble walking, then talking. Last summer she fell and broker her leg and that was it. Since then her decline has been even more rapid and on Memorial Day Weekend she sent an e-mail to all her friends informing us that her PLS had become full blown ALS and her time was limited. In the e-mail she said she was going to use her good china every day and not waste a moment. Even in relating such heartbreaking news, she remained true to her faith.

Two weeks ago I asked if Courtney and I could go and visit her today, because I had a 1/2 day at work. We'd bring dinner (which she needed pureed, but that was OK because I am all too familiar with that), a funny movie to watch and something sweet for dessert. On Monday, she e-mailed me and told me she was in an in-patient hospice facility because her husband was called away on business and she had to cancel today. I asked where she was, and although the hospice was 45 min-1 hour away, I decided I was still going, to visit her.

And here I am, drained from an emotional day. As I was leaving I began questioning everything. Mike was a person who would give the shirt off his back for anyone. Betsy was the same type person, yet here they both are prisoners in their own bodies. I work with an attorney who wishes that all his annoying clients get stomach cancer, and despite his "kind words", he has a boat, house in Vermont and vacations in Tahiti. How do I wrap my mind around this - how is this justified?

I have no answers now, but I know that one day we'll find them.

Bed Sores...

Mike is still fighting those bedsores. The one on his bottom isn't so bad, but the one on his shoulder along with one on his hip seem to have gotten worse. The hospice nurse visited yesterday (actually it was a substitute nurse because our regular nurse is out sick), but I had to call her back today because the sores looked like they got deeper overnight. As much as I HATE looking at them, I felt like I needed to see what Mike's aide was concerned about. The shoulder has a hole in it that looks like it goes deep - the same with the one on his hip.
The nurse came today and called the hospice doctor because she felt they warranted a visit from wound care. Our hospice doctor said it wasn't necessary and at this point in time, there's nothing more they can do. What does this mean? Does this mean they've given up on Mike?
I know that Mike's nutrition has slowed down dramatically and he has lost alot of weight, but the fact that they don't feel they should even TRY to have the sores cleaned out better than we can do, is unsettling. What's the harm in trying? Maybe if they were cleaned out, Mike may even feel more comfortable - and isn't that the goal of hospice? Even if they cannot cure someone, aren't they supposed to make them comfortable? This is the second hospice agency we've hired and we just cannot seem to find one that supports our needs.
Meanwhile, Courtney gets upset because she throws around "I told you so". She has feared hospice from day one because of this very reason.
A friend of ours was recently placed on hospice, and I will be visiting her tomorrow. She had been an angel to us on MANY occasions and she was diagnosed a few years ago with PLS (A "cousin" to ALS that was supposed to progress slower). Well, she now has full blown ALS and her time is limited. I hope and pray that the hospice her family has hired is caring for her for way they should.
So much sadness lately.