Sunday, May 23, 2010


On Saturday, Mike's brother Bob came to visit Mike. It has been approx. 6 years since he last saw Mike. I felt strongly about Mike "re-connecting" with his brother, so I reached out to him and asked Bob to come for a visit. Initially, Bob asked if he could come by on his own, without his children and wife so I was surpirsed when I found out he was bringing his oldest (11) and his youngest (5), but Courtney and Brandon were pleased to finally spend time with their cousins. The last time they saw the oldest, he was 3 years old.

The day went fairly well and I am positive that Mike knew Bob was with him. Bob had also brought along his friend who also knew Mike, which was quite a surprise for me. The entire visit was a little weird. Bob came and went like he had never been out of Mike's life, which was good I guess, but strange at the same time. He kept talking to Courtney about "the next time he comes" which would be nice, but we can only wait and see. We invited them to join us for our annual Lemonade Sale (for Alzheimer's) and Bob seemed receptive. I can only hope that he meant what he said and does not remain a stranger.

Thursday, May 20, 2010

A Special Visit

Mike still seems to be "out of sorts", although I'm not quite sure what's wrong. His "gurgle" doesn't seem to be so bad, yet he does sometimes breath a little faster. The hospice nurse came by on Tuesday and she said that it could be from him being in pain from the 3 pressure sores he has (ankle, heel and shoulder). She recommended tylenol (for now) and oxygen if he needs it. I continue to watch and see what happens. In the mean time, I am ABSOLUTELY 100% convinced that Mike knew we were not there for 4 days. Since we have been home, he seems to be "better", according to his aide. She said she noticed that he was not the same when we were not there. FYI - to all those families and caregivers who believe that Alzheimer's patients aren't aware of what's going on around them.
Speaking of which, Mike will have a long awaited visitor on Saturday - his brother Bob. It's been 5 years since he has seen him. On Palm Sunday when I went to mass, the priest said a few things that REALLY hit home. I will not go into detail, but when I left church that day, I KNEW what I had to do. Because Bob had never tried to reach out to us by calling, sending birthday cards or stopping by, I believed in my heart that Bob was not a part of our lives because he couldn't handle seeing Mike this way. Bob expressed to me that he felt he was not welcome in our home. Apparently there have been some miscommunication over the years and I felt it was time to bring it to an end. I reached out to Bob and asked him to visit Mike. I KNOW Mike will be aware of Bob's presence and I KNOW he will be overjoyed. Bob is the only family Mike has left (beside his 2 Uncles and Aunt who all live out of State) and he was always very close with his brothers. He took alot from them growing up - since he was the baby of the family. I forewarned Bob that Mike will appear "expressionless", but I will know by reading his facial expressions, how he truly feels.
Mike deserves this visit and I know it will mean the world to him.

Tuesday, May 18, 2010

Our Trip to Penn State

Well, we made it through our trip to PA mostly unscathed. We got off to a good start on Thursday when we made it in good time to my sister's house, where we were cheerfully greeted by my sister and BIL (my nieces came home shortly thereafter). It was nice to visit them again. We caught up with the family the rest of the day and suffered through a dinner of "pizza", actually that's what they called it, but we all know that no one makes pizza as good as New Yorkers (LOL). I complained to the "management" Friday morning when I was awoken at 5:30 a.m. (the pitfalls of sleeping on the sofa bed in the living room, when my sister and family were getting an early start to our trip to Penn State). Friday was also Brandon's birthday, so he sleepily opened his presents before we left.

After packing up our 15 passenger van and decorating it with window paint - we set off on our road trip. The weekend proved tenuous especially when you are dealing with 11 people with different personalities, likes and dislikes. I often felt like I was walking on eggshells, so as not to cause any commotion, but overall, I had a really good time. Friday night before the graduation ceremony, we all went out to dinner at a cute little place called Dutch Pantry Family Restaurant. Dinner was homemade and delicious and my sister surprised Brandon with a birthday cake. Next was our hour ride to Penn State (yep, an hour. The closer hotels were triple the amount AND sold out a year in advance!). We attended the "reception" which was nice and it allowed my nephew the opportunity to meet up with his friends and professors and gave my sister good photo ops.

Graduation was on Friday night and it was VERY emotional. In the near capacity auditorium, there was one empty seat next to me the entire night. I just kept thinking that Mike was supposed to be there with me. It also seemed like yesterday when Mike and I honed our babysitting skills on my niece and nephew and now here he was graduating from college. Before I know it, it will be Courtney and Brandon up there.

The next day we got a tour of Penn State's campus and walked A LOT!!! Saturday evening, my sister and her family took us all out to dinner to celebrate the graduation, and ironically, it was a a restaurant that Mike and I and the kids had gone to years before. You see, the hotel we stayed at was in this little town of Clearfield. It was Clearfield where Mike and I took the kids for about 4 years in a row to visit one of Courtney's friends from the neighborhood who had moved to PA. It was in Clearfield when I first noticed a problem with Mike. Here we were, 9 years later, back in the place where our future took a horrible turn. It was eerie and more emotional than I had ever expected. It was here that Mike asked, "so where is Courtney, anyway?" and the following year (2001) was the last year we visited her friends.
Despite the craziness that travelling with 11 people (2 of which were senior citizens) brings, we laughed alot and had so much fun. More memories were made.

Coming home was another story. Our 3 hour car ride turned into almost 5 1/2 due to horrific traffic on the NJ Tpke. It was extremely frustrating knowing that I couldn't go anywhere, and I had Mike home waiting for us. I called 4 different friends to see if anyone could come to the house to sit while Mike was sleeping so that the aide could leave, but no one was available. I felt SO BAD that the aide was at our home since Thursday, and she was stuck sitting there just waiting for us to get out of the mess on the Tpke. She lives in Queens and she takes public transportation. She wound up only getting home at 1am on Monday morning (we finally reached home at 10pm).

I got home to find out that Mike had developed a fever on Sunday and he was congested. His aide didn't tell me because she did not want me to worry. I haven't slept in another 2 days since I've been home, because Mike has been up alot. He also developed 3 bed sores while we were away. NO ONE is going to tell me that he is NOT aware when we are around. He made it QUITE OBVIOUS that he knew we were back and he has since been doing better.

You can be sure that this will be my last trip for quite some time.

Tuesday, May 11, 2010


In two days we will be leaving for our much anticipated road trip to Pennsylvania for my nephew's college graduation. I have not been at my sister's home in 6 years. WOW! Even though hospice did not come through with respite for Mike, I made other arrangements - even though I will need to pay out of pocket which will put a financial strain on me. I just could not/did not want to - miss this trip. My nephew has attended Penn State for 4 years and I have not been able to go once to visit him or check out his "home away from home". It took SO MUCH planning on everyone's part, but it looks as though everything is in order. Well, not literally....
I am still moving Courtney out of her drom, which needs to be completed by Wednesday. The rest of the college will be moving out next weekend, but since we won't be here, she has to be out before we leave.
I haven't even thought about what I am packing...the weather doesn't help either. Will it be 90 degrees or 40 degrees???
I need to prepare all of Mike's meals and medicine before I leave.
I need to get Gizmo's food etc together before we drop him off at the "pet hotel" on Thursday morning.
I need to make sure Mike's aide is all set and comfortable with everything before I leave.
Then there's the actual packing up of the car. Beside our bags, I have to make room for the 2 wheelchairs I will be bringing so my mom and her husband can get around the hills of Penn State.
Thankfully, my sister has taken over the role of "tour director" and has continually updated us on plans and created a clear-cut itinerary for us.

After all the above is said and done, all I will be left to do is pray. First and foremost, I will pray for Mike and his aide, then for me and my entire family being on the road for so long and finally for Gizmo in his unknown enviroment. I am looking forward to laughing so much this weekend that I will need my inhaler constantly (thank you asthma!).

Penn State here we come...................

Tuesday, May 4, 2010

Catch Up

Things have been somewhat "quiet" lately. Actually, not really - I've been busy. Next week will be our MUCH ANTICIPATED and NEEDED trip to Pennsylvania for my nephew's graduation from Penn State University. It has the potential to be a memorable and humorous road trip. Now that Mike's planning is completed (his aide will be staying with him), now it's time to get our "stuff" together. Beside packing and eventually getting Gizmo to his "hotel", there's also the small matter of moving Courtney out of her dorm, which MUST be completed before we leave for PA. This is where it is beneficial that she goes to school so close because we will be running back and forth almost every night to bring things out a little at a time, with the weekend being saved for the balance of the lareger items (and hoprefully I will have Brandon's help). She has finals Mon-Wed of next week, but she will only have some clothes, her sheets/towels and toiletries with her - the rest of her room will be bare.
I already forewarned my sister that while I am away, I will be on "mental vacation". I will not be making any decisions - I will just need to be told when and where I have to be. This is a COMPLETE 360 from what I do at home where EVERY SINGLE DECISION is made by me. It will be so nice to not have any pressure and I can only pray that everything will be OK with Mike while we are away.
Beside the hospice nurse, we have a dear friend (who also happens to be a nurse) who lives close by, offer to come by the house each day to check on Mike and Elaine. This will also help me relax a little. Just knowing that someone can be there in minutes, "just in case", or even to help Elaine if needed is an added comfort.
BTW - thank you to all who have reached out to me to help lift me up out of my funk. I thank God each and every day for all of you.