Different Choices

Every once in a while events lead me to reflect on my decisions. My family chose to care for Mike. I chose to uphold my marriage vows out of the love for my husband. There is NO DOUBT that Mike would have done the same for me. For better or for worse......There are times when I think about other families in similar situations. They have decided to "place" their loved one in homes or divorce their spouses so that they can live their life to the fullest with their children. These spouses chose to live their lives for their children. They have seperated themselves from their ill spouses and moved on. In each of those cases, the families are thriving. They have moved on emotionally, financially and physically. It's difficult at times to look back at my decisions when we are still struggling SO MUCH. My faith is tested on a daily basis but I want so much to believe that the lessons I have taught my children are so much more inspirational and enduring than ANYTHING tangible. I am being honest when I say that it's very difficult sometimes to see how much we are suffering and struggling even though I believe we are doing the right thing - the very choice that I know God would have wanted us to make. I see these other families "moving on" without their ill family member in their lives and I wonder how they feel.
Courtney and Brandon were 7 and 9 years old when Mike was diagnosed. Alzheimer's Disease has been their life, and they have lived with it 24/7. They have rode with the ambulance to the hospital, witnessed Mike getting Last Rites, change his diapers at night, fed him and washed him. They have been true caregivers, in every sense of the word.
Despite all they have given and sacrificed, they are now teenagers and they have the same needs as other teenagers with regard to what they could use in order to make their lives easier. These needs are much bigger and more expensive than the items they wanted when they were younger. So many people thought that we wouldn't have a problem with tuition because of our "situation", including myself. Reality is that I was wrong. I guess that's because on the financial aid form I indicated "married", and that would be assumed that my spouse is contributing financially. Having an ill spouse is like being in limbo. I am a "married widow" without the benefits of being a single mom. If in fact I was a widow, my children would be considered for more aid. Where on these forms do they list: married to someone with a terminal illness who cannot contribute financially???
My daughter has a license but no car. My son is learning to drive and his day will soon come when he will get his license, yet he will not be able to get a car. We simply cannot afford it. I KNOW this aspect of our situation is not unique, especially in this economic climate, yet I cannot forget about those families that have "moved on" and how well they are doing. What exactly is that showing my children? I am not a materialistic person in the least, but there sure are times when knowing you have a cushion to fall back on, is all the security one can use.
I pray EVERY DAY for strength. I pray for an angel to enter into our lives to help guide us and support us in the everyday issues of those facing a young family living with the unique challenges of Early Onset Alzheimer's Disease.
I would NEVER change the decision we made, as a family, to keep Mike at home with us and I am reminded of that every night when I go to bed and lie next to him. I just wish that SOMETIMES things would be easier for me and my children.

Courtney Goes to College

Today, we moved Courtney into her dorm. Truth be told, the college she is attending is not that far away from our home. I wanted her to dorm there, because I wanted her to "step away" from the co-caregiver role that she has been in with me for so long, and just be a teenager. She's away from home, but close enough so that she can grow and flourish on her own. I wanted her to enjoy the FULL experience of college.
Last week, we were also notifed that Courtney was awarded a $1,000.00 scholarship from the Inheritance of Hope. This organization helps families where a parent is terminally ill. Courtney submitted a video about Mike and his illness and how it has impacted our lives. Financially, it has devastated us and this scholarship was able to help Courtney with her books. You can visit their site by going to: www.inheritanceofhope.org. Unbeknownst to me, this is a faith based organization and that made me even more pleased. For all that Courtney has done through school and church, it was appropriate that she won.
Of course, today was sad for me on a few different levels. It's not so much that Courtney "left" as much as it symbolizes that she is beginning the process of moving on. This is the first step in her independance and life on her own. That's a hard pill to swallow. What makes it even more difficult is that I do not have Mike to share these feelings with. Even though I talk to him, I do not get the support and comfort that other couples would from their spouses. It hurts that Mike is not well enough to truly experience this journey. I've been thinking SO MUCH lately of how protective he was of Courtney and how he would ALWAYS say that he wanted her to be a nun (LOL). He didn't think ANY man would be good enough for her and he wanted her to be protected always. She will ALWAYS be "Daddy's Little Girl".

Life Goes On

This past Friday/Saturday, I took Courtney and Brandon into NYC. We saw Shrek -The Musical on Friday night and stayed at the Marriott Marquis. The next day we became "real" tourists and did the tour via double decker bus. We stopped at ground zero (World Trade Center) which we had not been since before the tragedy of 9/11. It was quite eerie, even though we couldn't see anything because of the enclosure for construction. Yet I could somehow feel the emptiness and sadness taking over the area. Everyone there was quiet and respectful. Peeking through the barricade set up, we could see the "footprints" of the twin towers and the massive hole was overwhelming. The sheer magnitude of the tragedy hit all over again. After our stop at ground zero, we got back on the bus and headed back to Times Square. About 10 mins. in, the heavens opened up and we got drenched. We were provided with rain ponchos, but it came down so fast and so heavy that I got soaked anyway and my poncho had a puddle in my lap. We laughed so hard.

This week we prepare for Courtney moving into college. Her move-in date is Thursday. A friend of ours works at Hofstra and he took Courtney to get the lay-out of her room. In a dorm development of 14 2-story houses, hers is one of the furthest from the parking lot and she's on the 2nd floor and the building has NO ELEVATORS!!! Yep, that's what I said. I warned my sister and niece (who will be coming in from PA to help us) and we all agreed that there will be some funny stories coming out of that day.

The reality of Courtney leaving is something that I'm having issues with. She is my "right hand man". She is my helper, and now I have to get used to her not being here all the time. When we went food shopping on Sunday she said to me, "Mom, this will be the last Sunday I go shopping with you for a while". That simple phrase caught me off guard.

Mike is doing OK. His aide was off yesterday and I had a REALLY difficult time feeding him. He normally drinks 6 glasses a day and yesterday he only drank a total of 3 for me. He did no better with breakfast or dinner. It scares me that if Elaine got sick or went away for any length of time, what could happen. I don't know how she does it, but she does. There was a time during this illness that Mike wouldn't do things for anyone but me, now he does things for everyone else but NOT me. He does appear to be slowing down more, but as always, when I spend any length of time by myself with Mike, I tend to think too much and find myself getting more nervous. He has two sores (one on his shoulder and the other on his thigh) that I am watching. I haven't heard anything from Hospice about the discharge. It's like sitting on dynamite. I have to follow-up with the other agency that was supposed to evaluate him on Wednesday. Other than that, as always, I take things one day at a time.

I miss Mike especially during this time in our lives. While he is still around, I don't believe he is aware that Courtney is going to college, nor is he appreciating the process. I have no one to share my feelings with and that is hard, as it normally is during these milestones in our lives :(

My Energizer Bunny

Mike came home on Thursday and so far, so good. He DID come home with a "touch of cellulitis" which concerns me and which we are watching. As with all his other hospitalizations, when he comes home, it takes a while for him to get back into his routine. Hopefully he will continue to eat well and stay hydrated. I have no idea what hospice plans on doing regarding his discharge, but I hope to line up another hospice to come and do an evaluation.

Courtney and I did our final shopping for college. As far as we know, she is all set, with the exception of some last minute "food/snack" shopping.

I will be taking Courtney and Brandon to spend the night in NYC on Friday. We haven't had a vacation in four years, so I thought it would be nice to do something before Courtney leaves for school. We are going out to dinner and then going to see "Shrek - The Musical" on Friday night. Saturday is up fro grabs, depending on the weather. I hope we have good days.

HAPPY BIRTHDAY DAD !

Today is my dad's birthday and I miss him SO MUCH.

My dad was my strength and sounding board. He was patient yet firm. He always had a smile on his face, no matter how bad things were for him. He was always laughing. His faith had grown over the years and that faith provided him much comfort in his later years. One of his favorite songs was "Smile" and that epitomized him. I often find myself singing that song and realizing just how much of him I have become.

I have HUGE issues in my life, issues that would otherwise break some very strong people. But because of my father's influence, I have been able to remain strong and always find the best in a bad situation. I see so much of my dad in myself, and I am proud of that. He was my hero and that will never change. There are nights when I talk to Mike and I realize that I married a man very much like my dad. Mike endured some horrific losses at such a young age, yet he never let that get him down. His faith is what carried him and he never lost HOPE. Despite losing both his parents at a very young age, Mike lived life to the fullest and was always happy. It's not to say that neither my dad nor Mike was ever not sad, but they wouldn't let that waste of energy consume them. Life is for the living.............

I wished my dad a happy birthday early this morning, and then must have fallen back to sleep. What a wonderful gift I received when I closed my eyes. There was my dad in my dream, speaking to me and being his strong, happy self. I wish he was here with me today (and every day), but I know what an amazing gift he gave me....The gift of love, faith, the gift of laughter and hope.

Happy Birthday dad - I love you and miss you....................

Update

Mike has been fever-free since Friday. I spoke to the doctor this morning and today is the last day of antibiotics. They will watch him tomorrow without and medicine and IV and if all goes well, he will be home on Thursday. He is a TOTALLY different person than he was last week. He's calm and restful and that makes us all happy.

Courtney is STILL avoiding the subject of college, since she still does NOT want to go to Hofstra. She's not doing anything she's supposed to and it's driving me crazy. I will be the one that has to run crazy at the last minute.

Brandon goes on Monday to the specialist and we will discuss his ankle and possible surgery.

Me, I'm still exhausted. I don't think that will ever change.

Looking Good

This morning I actually got to rest a little bit before I headed to the hospital. I had my breakfast, showered and then fell back asleep on the couch. Courtney woke me at 12:30 to announce it was time to leave. When we got into Mike's room, he looked good, but was sleeping. I started talking to him and he opened his eyes. People ALWAYS ask if he knows who we are. Yes, he does. As Courtney and I were talking to him, he opened his eyes and smiled. Courtney gave her usual "daddy-o" shake and he almost laughed. It felt so good to see him feeling better.
His one hand is all red and swollen from the IV and both his feet are swollen. I'm concerned about his one leg because not only is it swollen, but it's MUCH colder than the other. I am afraid of bad circulation as a result of a blood clot. The nurse called the doctor and he will check it out in the morning. During previous hospitalizations, they started Mike on Lovenox as a preventative measure, but not this time, even though I did tell the nurse he was prone to blood clots. Mike has a VERY SHORT window of time where he can stay in the hospital before he develops other issues. I hope he has not stay too long.