Tuesday, May 31, 2011

Glasses and St. Anthony

This past Saturday as I was getting Mike ready for bed, I placed his eye glasses on a shelf in the bedroom. As I was placing them, they fell. I heard a clunk, clunk, clunk, then nothing. I bent down thinking I would find them under the chair. I searched for about 10 minutes and couldn't find them - they seemed to have disappeared. Since it was late I figured I would search in the morning during daylight.

Sunday morning came and I tore the area of the room apart...nothing. Brandon went in with the flashlight...nothing. Courtney looked...nothing. We had Mike's Sunday aide in there, she took even more apart then I did, still we found nothing.

Mike absolutely cannot see without his glasses. He was almost legally blind when he was well. We have taken such special care in making sure nothing happens to his glasses (the one time his frame broke, we had to actually send them to a special repair place in Washington DC, where they soldered the nose piece). Since we couldn't find them, Courtney decided to offer him her glasses. Her eyesight isn't as bad as Mike's, but her prescription is still stronger than mine and Brandon's. Well, Mike looked amazing. His aide called him "sexy" and Courtney said it looked like he just came off a train in NYC.

Monday came and went and we searched and search and still nothing. By last night, I asked EVERYONE to pray to St. Anthony (patron saint of lost items) that Mike's glasses would turn up. We looked again this morning. Then, as Mike's aide was getting Mike washed, she took the wedge pillow we have to keep him propped up and out of the pillowcase dropped Mike's eyeglasses!!!

I keep that pillow propped up in front of our light before I go into bed, so a light is on, but it's not too bright for Mike (the light goes off once I'm in bed with him). The lamp is right against the shelf that I had placed the eyeglasses on. They must have fallen off the shelf and right into the pocket of the pillowcase.

Mike now has his own glasses, and while they may not be as stylish, I trust he can see much better!

Thank you St. Anthony!

Wednesday, May 25, 2011

The "Married Widow" Dreams

This will be a post diffferent from the rest, as I will be baring some of my more private thoughts and emotions.
I can't remember when or where I first heard the term "married widow" in referring to the wife of an Alzheimer's patient, but it hit me like a ton of bricks and has never been far from my mind. The term is perfect. While I am still very much married to Mike, he is not really "here".
I had a dream the other night which made me realize just how much I miss Mike's company and how much I crave the love that only a partner can give. We can all get hugs, love and support from friends and family, but we also know that there is simply NOTHING like the familiarity and intimacy of being with the one person who knows everything about you and still loves you. My dream was a bit choppy and freakish, so I will try to tell only the parts that make sense with regard to what I am trying to convey....... In this dream, I was with another man (it was obviously after Mike had passed) and we had been dating for some time. One night, I said "I love you" to him, but was embarrassed because I wasn't sure that my love would be reciprocated, so I ran away. (Besides Mike, there was only one other person I was ever in love with, so saying that to someone is a big issue for me) Anyway, after I ran away, I found myself in a mall-type setting just walking around by myself, trying to make sense of things. I noticed that some employees were paying extra attention to me. I sat down and had something to drink, when these singers came in and started singing a love song to someone. Lo and behold, the song was for me, and this mystery man whom I professed my love to, came in from behind the singers to surprise me. He gave me a big hug and said "I love you too". He was some kind of big shot in this place and he had his workers watching out for me to make sure that I was OK. In that moment, in my dream, I felt safe, protected and loved once again - and it felt good.
It's been ten years, and for ten years I have been the protector, guardian and head of the house. I never realized before this dream, just how much I missed having a healthy spouse. I would love to have a husband to share the responsibilities with, to count on when I feel like I can no longer do it all myself and especially to have a man to protect me, love me and make me feel safe. That dream the other night stirred up feelings that have been buried for many years. I get up each and every day and proceed with my day like a robot. I move from chore to chore without even thinking. I am constantly in the "on" mode. I work, raise my children and care for Mike. I am the "go to" person for EVERYONE, but I miss having my "go to" person.
Married widow.. that's what I am. I've been losing Mike every day, little by little for ten years. It's lonely and I wonder if I will ever have the opportunity to feel loved again. I wish I had someone to lay next to me at night - to hold me - and tell me everything will be all right.
Goodnight, sweet dreams.......

Saturday, May 14, 2011

Happy Birthday Brandon!

Today is Brandon's 18th Birthday! I just can't believe how fast time has flown by. I had gotten complimentray tickets to the Yankee/Red Sox game tonight so Brandon and his three friends went. Little does he realize, but I requested that they "announce" his birthday on the scoreboard. I can't wait to hear what he sayd (Courtney reached out to his one friend to make sure Brandon is in his seat and paying attention to the scoreboard at the appropriate inning). I wish I could see his face.
Unfortunately, Mike's one sore looks terrible...it's gotten bigger and deeper. It was so bad today, I couldn't even clean and dress it...Courtney offered to do it and I let her (if I absolutely HAD to do it I would, but I was gagging just looking at it). Bed sores were my biggest fear because I knew I was going to have issues with them. I have done so much for Mike and have seen so many gross things over the years, but this is way beyond that. For some reason, neither Courtney nor Brandon have any problems with it. I guess they inherited Mike's stomach for all things gross. I am SO thanful for their help.

Wednesday, May 11, 2011

Hope, Faith and Bed Sores

One of the most difficult realities of this disease is that there is no hope. A diagnosis means death. No chance of remission or cure. Without hope, seriously, what is there? We can hope for something as mundane as good weather, or we can hope that tomorrow will be a better day. People count on hope to get them through some of the toughest of times. Hope is essential. No one ever wants to say it because it sounds so drastic, so dark...but Alzheimer's strips all hope away.
I called the hospice nurse on Monday and asked that she come to visit when Mike is in bed and she can actually see his bed sores. She agreed and came yesterday to confirm one of my fears. Three out of 4 of Mike's bed sores are now infected. This scares me because I can't help but think of Christopher Reeve. He was wealthy and had access to the best care and resources, yet he passed away from a bed sore that became infected. It doesn't make a difference who you are or what kind of care you get. No matter how much we took care of those sores, they still got infected.
My heart hurts for Mike. I can't imagine the discomfort he feels. The sore on his shoulder is the worst and there are some moments when he does moan and appears to be uncomfortable. He doesn't deserve this, no one does.
Once again, and always, I turn to my faith. I pray that the sores heal and that Mike experiences only the slightest of pain, which we hopefully can control.
This weekend, the Alzheimer's Association is once again heading to Washington DC to try to make a change. We can't go this year due to finals and birthdays, but I gave permission for them to tell our story as much as possible to anyone who NEEDED to hear it. The one thing we can HOPE for is support for research.....and eventually a cure.

Friday, May 6, 2011


I took this picture on my phone today before work. Mike looked good so I thought I would share it with everyone.

Thursday, May 5, 2011


It's been a few days and thankfully no fevers (although I hate to jinx anything). Mike's sores have good days and bad and today, the one on his bottom is not good. I assume at this point they will never go away, it will just be a question of trying to keep them "at bay". What makes it so difficult is there is not one side of his body that doesn not have one, so no matter how we position him, he will be resting on a sore. I just don't know how he deals with this every day.
Brandon left this morning for his senior trip to Disney. I had to wake up at 3 a.m. to get him to his school. This meant that my brother had to get up early also, so he could stay downstairs and listen for Mike while I was gone. This is an example of the little plans that most people take for granted. I just hope Brandon is smart with his sunscreen - his pale Irish skin and the strong Florida sun have never gotten along. The ankle he did NOT have surgery on has been rolling on him, so he took his brace and we all hope he makes it through without any mishaps.
Brandon also chose his college for September..... Quinnipiac University in Connecticut. It's about 2 hours away, but it offered him the best scholarship. Not only will he get the scholarship for 4 years, but as long as he maintains a 3.0 average, that scholarship will carry over into the graduate program which he will need for physical therapy. I know I will have issues when he goes away. He's the baby and I won't have anymore at home with me....at least for now.
Courtney will be finishing up her second year of college (her first at Fordham) and she has done very well. I am EXTREMELY proud of both of them.

Monday, May 2, 2011

Uphill battle

Lo and behold, Mike must have had some kind of infection, because over the past few days he has FINALLY begun getting stuff up and out of his chest. From what I have seen, it's no wonder he had been so miserable. I'm not saying that Mike will be "fine and dandy", but if I hadn' t pressured the hospice nurse into giving him medication, he would STILL be struggling. I pray he will get through this infection. He has not had a fever for 3 days - which is a good thing. He's still coughing and I'm still worried about him getting dehydrated. His shoulder is still dislocated and he still has 4 pressure sores. God Bless our Energizer Bunny!