Wednesday, November 30, 2011

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
( - 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.

Monday, November 28, 2011

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.

Friday, November 18, 2011

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'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.

Tuesday, November 15, 2011

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.

Saturday, November 5, 2011

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.

Wednesday, November 2, 2011

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.