Saturday, August 29, 2009

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.

Thursday, August 27, 2009

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: 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".

Monday, August 24, 2009

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 :(

Sunday, August 16, 2009

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.

Wednesday, August 12, 2009


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....................

Tuesday, August 11, 2009


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.

Sunday, August 9, 2009

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.

Saturday, August 8, 2009

3rd Annual Lemonade Sale

Today we had our 3rd annual Lemonade Sale to benefit the Alzheimer's Association. I am VERY pleased to say that we raised $700.00. That's just about double the amount we made last year. Courtney and her friends, along with Brandon and his friend worked really hard and the profits showed it.
Mike is doing well. He has not had a fever for two days now. His lungs are clear and his blood pressure has risen, and for all of that, we are thankful.
It's been a busy week and weekend and I haven't really had the time to get the rest that everyone, including the nurses caring for Mike, are telling me I need.

Courtney and her friends and myself selling all that Lemonade today August 8, 2009.

Thursday, August 6, 2009

Fever is Back

After last night, I felt a little more relaxed, but that changed today when I found out that Mike's fever came back.
He had a good morning - ate and drank. On my way to the hospital, I called his room and spoke to his aide who told me about his temperature. It was 102. After all the postive feelings I had last night, I was obviously disheartened. When I got there, his face was all flushed again and his breathing was fast. I hate seeing him like this. They took more blood to culture it again. I don't think the first culture showed anything. I don't know how he is dealing with this.
Meanwhile, Courtney went into NYC tonight to see David Cook perform at the Nokia Theatre in Times Square. The only problem, the friend she was going with bailed on her this afternoon and she wound up going in by herself. I was surprised and dumbfounded that she decided to do this on her own. I was angry that her friend did this to her, but Courtney was not going to let that stop her. She took the train by herself, waited on line by herself (SRO), enjoyed the concert by herself and is now taking the train home by herself. My nights of no sleep will continue, as I will have to pick her up at the station around 12:25. And tomorrow morning she is leaving at 4am to go BACK into the city for the Good Morning America Concert Series to see David Cook, Adam Lambert and Kris Allen. Hopefully, her other friend will not bail on her for that.
I am glad that both she and Brandon are doing their best to lead "normal" lives. I KNOW they love their dad VERY much, and I KNOW he would want them to have fun.

Wednesday, August 5, 2009

Fever Gone

Mike seems to be doing better today. His breathing is calmer and he hasn't had a fever since last night. That's an accomplishment. He has had a really high fever for 5 days and I cannot even imagine the toll it has taken on him. Elaine (his aide, our angel) said he ate breakfast and lunch and drank some. When I got there after work, he was sleeping - soundly. It made my heart lift just to see him so calm. He had been struggling for so long with the fever. His blood pressure is still low (88/62) and I'm hoping once the infection subsides and he gets more hydrated, it will rise. They are treating him as though he is septic, but the blood cultures have not come back yet - it will still be 2 more days.

My day at work was very emotional. There were some mix-ups regarding some time off that I had requested. It eventually worked iteself out, but not until after my boss got angry and I got upset. It just brought to light the fact that we have not had a vacation in years and what we had been looking forward to was almost taken away. I realized how excited the kids and I were about something so small, and how others look to larger things for happiness. With all the emotional turmoil we have been going through this last week, I did not need this added to it.

Tuesday, August 4, 2009

In Hospital

Today I arranged to have Mike taken to the Hospice's in-patient hospital since his temperature never went away. This morning it was 103.5 and I got VERY concerned. When the ambulance came to get him, his blood pressure was very low - 77/?. They were concerned about transporting him that way. Once he got the the hospital, they connected him to more oxygen. Eventually, the got him on an IV and they started him on Cipro. They are concerned that the infection may have gone into his bloodstream. When I asked if they could still treat it, they said yes, but they have to be more aggressive and treat with more than one antibiotic. While I was with Mike tonight, his fever went up yet again and I was glad that I made the decision I did. I still feel bad that I didn't get him to the hospital sooner.
I pray for the best, but I'm always concerned when Mike gets sick that he will not rebound.

Monday, August 3, 2009

4 Days of Fever

Last night was my 3rd night without sleep. Mike's fever went up again at 5am (102.5), so I gave him a sponge bath and tylenol. I called in sick so I could get some sleep. Little did I realize what my day held in store, and sleep was not on the list.
My first call was from the hospice nurse saying that she would be over around noon. The second call came from the x-ray tech stating he would be over in 15 mins. to get a chest x-ray. The third call was from hospice stating they were sending their social worker over today for me to sign discharge papers......Yes, that's what I said. Three sleepless nights and one sick husband does not make me a strong person, so of course, I broke down. My actual comment to them was "are you serious. My husband has had a fever for 4 days and you're still going to discharge him?". Yes.
So my phone calls began. My first and only call was to our social worker from LIAF, who now works with Mike's Dr., the same dr. that recommended this hospice. She told me to sit tight, she would make some calls and get back to me. Oh yeah, and I called her on her cell phone because she was home on vacation this week. About 1 1/2 hours later, I got a call from hospice stating that Mike's discharge was being put "on hold". Could they do me any favors? I felt like they thought they were doing us a HIGE favor. I can't begin to tell you the additional stress they caused me this morning with that phone call. In my mind, there is NO EXCUSE for what they did.
Mike STILL has a fever. I agreed with hospice that if it doesn't go away by tomorrow, I will admit him to the hospice "in patient" facility for acute care - meaning he will be in their unit until they can stabilize him and/or treat him successfully, and then he will come back home. My concern now is that the UTI he has, is not being treated with the correct medication and as a result could get worse. The lab came today to pick up his sample, but it will take 1-2 days to get results back.
As usual, the kids are their usual optimistic self, and I am jealous of that. I can't help but worry about the worst. Then I hear my dad's voice in my head saying, "why worry about something you have no control of?" I pray that Mike's fever breaks and his infection goes away. We'll see if God has the same plan.

Sunday, August 2, 2009


Yesterday was not great. Mike had a fever ALL day (between 101-103 degrees). He was prescribed amoxycillin. The hospice nurse came in the afternoon, and Mike was pretty much OK. He was breathing heavy, but that we knew, was because of the fever. We were told to give the antibiotics 48 hours and HOPEFULLY the fever will subside. If not, they may have to change medicines.
Last night was horrible. Once we got Mike into bed, he started coughing and sneeezing constantly. His breathing increased. He even coughed up some food. After about 40 minutes of this, I called hospice. They suggested I give him a breathing treatment and turn up his oxygen, which I did. Surprisingly, it helped. When they called back to check on him, I was happy to say he was calm. Throughout the night though, he kept wincing and pulling his hands up. His stomach was making awful noises. I think it's the amoxicillin, because that medicine upsets MY stomach when I take it. Last night he started sweating terribly so we thought his fever broke. Unfortunately, he woke up with a fever again this morning. Hospice called 3x and they are sending over a nurse to check on him.
I am EXHAUSTED. Two nights of hardly any sleep, is taking it's toll. I just hope we all make it through this illness healthy.