A "Cheesy" Tale

This is another example of how we must always be on top of things when dealing with a loved one with AD.

Yesterday I was in the DR on the phone, Brandon was in there with me doing work on the computer and Courtney was working on a project. I was preparing dinner (Hamburger Helper Crunchy Taco) and stirring the meat every 5-10 mins. I had prepared the "cheese" topping as directed, by adding milk to the powdered cheese mixture and I set it aside for when I was ready for it. After another 10 mins. I went into the kitchen to stir the meat when I noticed Mary, Mike's weekend aide, rinsing out the measuring cup that held the cheese mixture. I asked what she did with it. She's Haitian and it's often difficult to communicate with her. She asked me "what do you mean, I gave it to Mike". Well I thought I was going to have aheart attack. Apparantly, she thought the cheese mixture was the yogurt I give Mike after dinner with his medicine in it. How could one possibly mistake a creamy pink yogurt with a lumpy orange mixture????? I knew this could not do permanent damage to Mike, but my BIGGEST fear and concern was that he would get an upset stomach, that would lead to him throwing up, which could lead to him aspirating, which could lead to him getting pneumonia.

After he ate this "stuff" up, I now had to give him his yogurt mixture with his medicine, which I was afraid would upset his stomach even more. After watching him all night, he appeared to be OK. As an aside, the aide did tell us that he seemed to really enjoy the taste of this "stuff" which I can't understand for the life of me. She said she had no problem giving it to him and he even opened his mouth wide for more.

Even though this seemed to work out OK, and there were some moments of levity, it just brings the reality home of how helpless Mike is. He was given something to eat that he shouldn't have been given and he couldn't say anything about it. I just thank God nothing bad happened.

Our wonderful aide

One of the most difficult things for us to get used to, was having a "stranger" in the house all the time. But as the days turn into weeks, turn into months, turn into years, this person is no longer a stranger. Nathan has been with Mike for 2 1/2 years and he is a Godsend. Because Nathan spends more time with Mike than I do, he can get Mike to do things I cannot do. They have such a special bond, it's heartwarming to see. It's always difficult though when one of our regular aides is away or sick. We then have to go back to having a stranger in our home caring for Mike. At times it feels like we cannot be ourselves and at these times, I feel for Courtney and Brandon. It's difficult enough being 13 and 15 and going through changes in your life and body, but doing so with a stranger in the house is even more unnerving.

We have been blessed with some wonderful aides and you could just tell that their heart is into the job they were called to do. Other times we have not been so lucky - an aide falling asleep on the living room couch (this was when Mike was still able to walk around) another aide who left Mike inside when she went outside to smoke, another who left for 1 hour to have lunch and yet another with fingernails at least 2 inches long!!! Because of these experiences, many family and friends suggest that I write a book, and who knows, maybe one day I will have the time to devote to that project. But for now, we are always praying that our regular aides don't get sick.

There But for the Grace of God......

We should be reminded of this saying more frequently. I am quite disheartened and saddened when I hear about people who cannot or will not care for a loved one with an illness. What would you do if the situation was reversed? Think about how you would feel if the one person you loved more than anything, who knows you more than anyone, "couldn't handle" being there for you. What would you do?

We have been through so much with this illness and things were especially hard as we traveled the anger and agitation stage. I had no idea who this man was before me, punching a hole in our kitchen wall.

The only way I could get through this, was to CONSTANTLY put myself in Mike's shoes. There was not a mean bone in his body. How frightening it must have been for him when he lashed out, screamed and cursed? How scared must he have been when he didn't know where he was or what he was doing. I will never forget one of the last times we went to church together as a family. Mike was raised strictly Catholic and attended mass regularly. I cried and my heart broke when I saw that Mike forgot how to bless himself during mass. No, this is not something he would have chosen, but it IS something we decided early on, that we would be there to help him through.

As I explained to Courtney and Brandon, you are defined as a person by how you react during difficult times. You can either run from it, or face it and conquer it. The Long Island Alzheimer's Foundation called us "Team Henley", and I find that this name is most appropriate.

We need to be there for those we love. If there is any lesson we can teach as we travel this journey it's this.....THERE BUT FOR THE GRACE OF GOD GO I.

(The picture was taken Dec. 2005)

Here we go again..........

Mike had been doing so well since he was discharged from the hospital in mid-February. He's been eating alot (Mike always loved his food) and drinking enough to keep himself well hydrated (this is a big concern with Alzheimer patients).

I believe he has the intestinal infection he had both times he was in the hospital. Normally it's picked up in the hospital when it is transferred from one patient to another - OR - you can develop it from being on antibiotics too long. Neither situation happened, so I'm not sure how it came about. I did some research on line and it said that being on Protonix/Nexium etc. for long periods of time could also cause this problem. Lo and behold, Mike has been on either/or for the last 5 years. He will start an antibiotic for the C-Diff (the name of the infection) AGAIN, and I will be speaking to his doctor regarding whether it would be worth it to take him off the Nexium. I just always feel so bad for him. He can't catch a break. But true to form, he's still laughing and smiling. That's our Mikey..............

Life Goes On

Each day continues to be different. When I came home on Friday, I noticed that Mike's nose was red and swollen. I'm not quite sure what it is. The nurse that comes to check on his sores, said she believes it could be irritated from the oxygen and to leave him off of it for 24 hours, since Mike seems to be breathing OK. It's now Tues. and his nose seems redder than usual. I guess I will be checking with his Doctor about that.

The kids are doing OK. Every once in a while, I realize that they are STILL teenagers dealing with their normal, everyday issues. They fight and they argue and one instigates another. I often wonder if this behavior is normal for their age or whether it is exaggerated because of Mike's illness. Whatever the case may be, their constant bickering always bring me back to the reality of raising 2 teenagers. Sometimes I am tolerant, other times I get very frustrated. I often wonder what things would be like if Mike was well and how he would handle the kids.

(Picture was taken at Universal Studios, Orlando last year when the kids and I went to visit friends 8/06)

Faith

I've come to realize that this disease has made me walk around with a cloud over my head the last 6 years. Sure, there were many times when we had fun and laughed, but it was never completely. There was always that reality that things would never be ideal. Snapshots of our lives would appear "normal", but putting the entire picture together, one could see there was something definitely missing. That missing something was my husband and my children's father. We were often left to do things without him for any number of reasons. There was, and still is, a part of us missing when this happens. This disease takes away so much and while I try to focus more on the positives, I have to be honest when I say that there are often times when I cannot see the "sunshine". Our faith has been a constant and THE ONE thing that continues to keep us all strong.

Hope

I am more optimistic than ever that this disease will be cured. I found out yesterday that the Alzheimer's Association is starting a national campaign with numerous celebrities to help promote awareness. The ads will appear in magazines and TV. It's EXACTLY what this disease needed. I also got a link today on the Alzheimer Daily News that the Alzheimer Research Forum has added an Early Onset Familal category to their web site. FINALLY, people are beggining to understand the horrors of this disease, ESPECIALLY in younger people. I have hope for the future.

Tues. April 17, 2007

I am extremely grateful that we survived Nathan's 2 weeks away. Once you have an aide that knows your LO so well, it's so hard to not have them around. The substitute was wonderful and we all made it through unscathed.

Mike continues to amaze us each day. When he smiles, he lights up the room. Yesterday, he was so glad to see Nathan, he actually did a little "dance" in bed (he shook his upper body) which made us all laugh. His sense of humor, in spite of all he's been through, is my inspiration.

I pray to God everyday that Mike remains, healthy, happy and at home.

Welcome....

Welcome to our family's journey of Early Onset Alzheimer's Disease (EOAD). My husband Michael was diagnosed at the age of 36 - he is now 42. He lost both his mom and brother to the disease.

This has been a long, difficult and often times exhausting journey. Our goal has always been to take care of my husband at home for as long as we can. We have 2 wonderful aides that care for him 7 days a week. Our children are 15 and 13 and they help take care for their dad also. I work full time, but take over caregiver duties once I get home.

We have been very vocal advocates for awareness and research for EOAD. This picture is of my family and friends with Mike and his aide as we prepare to walk in the Alzheimer Association's Memory Walk. As a team, we raised over $1,000.00. We have also created panels on the Leeza Gibbons Memory Wall, we have appeared on The Oprah Show, Paula Zahn Now and other local venues (newspaper, TV and radio). I have never been embarrassed nor ashamed of my husband for a disease he never chose. In fact, we are all in awe of him.

Mike is our hero and our inspiration and his smile gives us the energy we need to get through each day. I hope to be able to post frequent entries so you can come to understand our lives and our hopes for the future, while we love and care for one of God's most special people....my husband, Michael.