A Bad Week

This week Nathan is away and we have a subsitute aide. On Tuesday, Mike began showing signs of not wanting to eat. Of course, I assumed it was a difference in his routine. Then lo and behold, when he yawned and I saw that his tongue was all white. Mike has thrush .....again. This is painful and it hurts to swallow. I refilled his prescription and began treatment today. I pray that it goes away soon, so that his appetite comes back to normal.

Yesterday, my BIL went for a routine stress test. He was admitted to the hopsital for further tests today because of a blockage they saw. The test today showed 2 arteries were 90% blocked and he was scheduled for immediate bypass surgery tomorrow morning.

I feel helpless. My sister lives in PA and I can't get there to help. In any other circumstances, I would drive out there and help her in any way possible. I just cannot do that and I feel so bad. Of course, she understands, but that doesn't make my guilt go away. My BIL's brother is flying in from Arizona this weekend and his parents are already in from NJ. I'm glad my sister will have his family with her as she goes through this difficult situation. Please say prayers.

I Pray - and Pray Some More

This week Mike's aide is once again away. The substitute we have is a very personable young man, but Mike is not doing as well with him as he did with the last substitute. Since we were all home yesterday, Mike did pretty well. He didn't eat his normal amount, but he drank about 5 glasses. We are very concerned about the drinking and the dehydration issue. By the time he takes his nap, he would normally have 4 glasses of juice, today he's only has 2 and he's not eating too much either. So, is Mike having a bad day because: of a health problem, because Nathan is not here or just because??? I don't know the answer, so I pray and then I pray some more.

Regular Day

Today will be the beginning of Memorial Day weekend. How I wish we were able to just "get up and go"....all of us. But that cannot happen. Therefore, I will do the best I can to make sure the kids have fun. Next week our wonderful aide, Nathan will not be here, which means we will have someone else caring for Mike. This thought will weigh on my mind the ENTIRE WEEKEND. I will pray that everything goes OK. I hope to steal some time tomorrow with the kids and maybe go to the movies.

I think I will give up on the fight with Medicaid..for now. I have been a firm believer that all things happen for a reason. Four times the agent from social services has called to ask, "Are you sure you really want to switch to straight Medicaid". I have also not gotten alot of support and encouragement from other agencies that in the past have helped me. I began to think, maybe this was all for a reason I could not see. I put ALOT of thought into this decision, and for now, I will keep everything as it is. One of my biggest fears/concerns with putting Mike on hospice has always been my fear that they would "give up" on him. If he got sick, dehydrated etc., they would just make him comfortable. Had we done that back in January, Mike would not be here with us now, laughing (very heartedly I might add) with us almost daily. I'm thinking that maybe the Medicaid agent's voice was Him telling me to keep things as they are. Maybe things would NOT have worked out the way we wanted had we put Mike on Hospice. This is not to say that I will not eventually make that decision, but I don't believe now is the time. I guess I have to trust my instincts.

God Bless our Troops on this Memorial Day Weekend and all who have died protecting our Country. I would also like to honor my dad (a proud WWII Navy veteran) . I miss you dad.....

What People Take for Granted

This coming Monday is Memorial Day. As my dad was a WWII veteran, I was hoping to go to the cemetary and afterward, spend some time with the kids. It seems like each weekend comes and goes so fast, and we're always busy with food shopping, cleaning etc., that we never get to do anything "enjoyable". I was hoping to do that on Monday, a "bonus" day if you will, when I knew Mike would be well taken care of with Nathan. Instead, Nathan told us that he needed to take off a few days next week (he actually told me he was taking off 2-3 days, but when the substitute called to ask for directions, HE told us he would be in for the entire week. Nathan never even told us he was taking the whole week??!!) So now, instead of spending that "bonus" day with the kids, I will have to remain home, close at hand to make sure that this substitute can handle Mike. I won't even go in to what I will do with work next week. Most aides have no idea how to care for an Alzheimer patient and I cannot, with a clear mind, leave Mike in the hands of someone who doesn't know what they're doing. I am always torn with regard to my responsibilities - Mike, the kids, work. It seems as if I am constantly being pulled in every direction, with all parties having equal priorities. So this time, I will not get that day to spend with the kids, something most people take for granted.

Quilt to Remember

This is a picture of Courtney, Brandon and I in November, 2006 at the Central Park kickoff of the Alzheimer Foundation of America's Quilt to Remember. I was honored to be asked to speak about our life with Alzheimer's and to honor Mike, and memorialize his mom and brother in our quilt panel. The quilt will be travelling to various towns across the USA. If you get a chance to visit the quilt, please do. It will touch you in a special way.

The Oprah Video

Courtney needed to bring the video of our appearance on Oprah into school for something, so I had to bring it out yesterday. I have not watched the video since the day the show aired back in July, 2004. To say it was difficult to see, would be an understatement.
First, the kids were so little and they had no idea what lay ahead of us. Then there was the clip of Mike playing with them when they were children, and of the clip of Mike ranting, then crying afterwards. My heart broke, and unfortunately, Courtney was sitting right next to me when it happened.
I cried for Courtney and Brandon and the dad they would never know. I cried remembering the day I videotaped the piece that aired - of him playing in the pool with them when they were so small. They have been cheated out of SO MUCH by this disease. I cried when I heard Mike's voice, which has been silent for so many years now. I struggle each day to just get by, then I hear the voice of the man I fell in love with and I am torn to pieces. Not only do I cry for all that I lost, but I cry because I forgot what Mike sounded like.
Then comes the clip of Mike running up the stairs angry (Courtney videotaped this with the camera Oprah's producer left with us). After his anger, came the tears. His tears as he struggled to speak, confused as to what he was doing.
Now I know why I never watched the video before. It hurts too much. It seems like a lifetime ago and so much has changed since then. Even though I lived through this illness with Mike's mom, I now know that I really didn't know exactly what I would be faced with, when Mike was diagnosed.
For anyone who may read this Blog, I ask you to NEVER forget Mike or the millions of others suffering with this disease. Please help by donating to research and keeping his story alive. The more that people know about this disease and the horrors it brings, maybe then the more that will be done to end it.
God Bless all AD patients and their families.

Medicaid Nightmare

It has been 3 months since I've been trying to place Mike on "straight Medicaid" rather than the Medicaid HMO he is currently on. The reason for this is that we want to put him on hospice. Hospice has come highly recommended for their support and services, and does NOT limit the time to 6 months for AD patients. The state easily extends hospice because of the unpredictability of this disease. Working with social services has been horrific. They cap the amount of hours of an aide at 10 hours (Mike's aid currently works 11 hours a day) OR they supply a live-in. We have no space for a live-in, so they are telling us that in order to switch Mike to straight mediciad, we will lose 5 hours of help a week. They claim that 10 hours a day is "more than sufficient". Imagine that!!!! I asked the nurse at social services if she ever took care of an AD patient? 10 hours a days is sufficient, are they kidding??? We barely get by with 11 hours.

I have no idea what I will do. I did ask for paperwork to be started for a "fair hearing" to see if I can appeal their decision. Mike's doctor is willing to go to bat for us. PLEASE, everyone pray that this works out. It's so sad that even when you WANT to do the right thing and keep your loved one at home, the government makes it so difficult. Shame on them......

Our Dogwood

When Mike and I first saw our house, the first thing we noticed was the beautiful dogwood tree in the front. We saw the house in April and it was in full bloom. Oh how Mike loved this tree. Spring is Mike's favorite season and now that all the trees and flowers are blooming, he is even more close to my heart.
Mike has been doing well these days, but I'm always concerned about becoming "comfortable" with his health. Past experience has proven to us that anything can happen at any time. It's a sad way to live, but it's the only way we know how.

Brandon's Birthday

Today Brandon is 14. Where has time gone.

He was due to be born on May 20th. I had worked the entire day on the 13th, but told my co-worker that I didn't feel well and that I may not be in the next day. At about 6pm while taking my mom home, contractions started. When Mike came home from work, we went to Toys 'R Us to pick up some newborn diapers and a gift for Brandon's new "big sister". As we were checking out, Mike, very proudly, told the cashier that I was in labor. We went home, called my mom to come back, got to the hospital about 10:30 p.m. I asked the doctor for an epidural, but he explained that while it would ease the pain, it would prolong the laboR. He suggested that I "stick it out". I did, and gave birth to Brandon, COMPLETELY NATURALLY, at 12:58 A.M.

It seems like yesterday..... I remember how thrilled Mike was now that he had a baby boy. He loved Courtney with all his heart, but now he had a son to "pal around" with. He was so proud.

Today our "baby" is 14. When I told Mike this morning, his eyebrows raised and I wondered just how much he understood. Sometimes, I truly believe he knows.

Confirmation

Today Brandon made his Confirmation. It was a beautiful sunny spring day. My sister and nephew came in from PA and they made it with 1/2 hour to spare. Even though it was beautiful outside, it WAS warm in the school's chapel, so of course, the ceremony seemed long. As I watched Brandon standing there, I remembered, like yesterday, his Christening. ....Time flies.

After the ceremony, I took everyone out to lunch at The Milleridge Inn. The last time I was there was when Mike took me there for my birthday years ago, even before we were married. It's decorated so nice during the Christmas season and since my birthday is right around there, Mike took me as a special treat. Now here I was 21 years later with my children and relatives without Mike. I thought of him all day.

When we got back to the house, Stephen and Gail were visiting with Mike and he seemed to really enjoy their company. He laughed out loud at something said and even appeared to mumble "thank you" when they left. It was magical.

Brandon made me so proud today and I was so glad he had such a wonderful day.

Special Day

Tomorrow, Brandon will be making his Confirmation. My sister and nephew will be coming in from PA. (my nephew is Brandon's sponsor). I have a picture of us (as a screensaver) on my computer from when Courtney made her Confirmation 2 years ago, and it makes me sad to see how much Mike has changed. In that picture he is standing with us, as family, laughing. Now, we will stand around him as he sits and we will be lucky if we can get that infamous smile. Even though he will not be able to attend the ceremony, we are blessed to have him share in the day with us. His presence will be missed, but I know in my heart Mike would be so proud of Brandon this day.

Never Enough Time

The last few days have been very busy. This past weekend we spent most of the time outside trying to make our house look presentable. The grass needed to be cut, the garden weeded etc. In order for me and the kids to get work done outside, so much had to be bypassed inside. It just seems like the weekends go so fast and I never have enough time to get things done. On Saturday, we do our Target shopping and on Sunday we do our grocery shopping. After grocery shopping I have to prepare all of Mike's meals for the week. Everything needs to be cooked, pureed and frozen, so all his aide has to do is heat things up each day. Years past, I would use frozen meals, but then Mike had a problem with dehydration. After reviewing the ingrediants in the frozen meals, I noticed how much sodium was in them. Every once in a while I still cheat and use them, but for the most part, Mike's meals are home made. That takes alot of time, but in the long run it's worth it. The hard part is when something has to be thrown in that's not part of the schedule like running the kids somewhere, going to a different store etc. This throws the whole weekend schedule off and something invariably gets pushed to the side.

This month is also very busy, Brandon's Confirmation (this Wed. 5/9), my mom's birthday (5/11) Mother's Day (5/13) and Brandon's birthday (5/14). Factor into that all the shopping etc that needs to be done for all of the above....UGHHHHHHHHHHHHH.

There's never enough time....for everyday errands/chores, and for life.

Family News

Courtney has applied to be a volunteer at the local hospital. Since she saw so much when Mike was a patient, she thought she would like to help out. According to her, she knows all areas of the hospital anyway. Her only concern - she will spend so much time talking to lonely patients, she won't get anything done.

Brandon is getting ready to make his Confirmation next week. My sister will be coming in with my nephew who will be his sponsor. We look forward to spending time with them.

We have been trying since February to change Mike's Medicaid around so that we can enroll him in hospice. Because AD is so unpredictable, the 6 mos. or less requirement for hospice is not really a problem. I was told that there are patients with AD on hospice for years. We are trying to get it so we can take advantage of the extra services and to try to keep Mike out of the hospital. Unfortunately, NOTHING has been accomplished since February and I am getting frustrated. Even when you want to do something beneficial, it's not easy.

Gizmo just got a haircut and it was much needed. Maybe I will try to get a picture up. He continues to be very protective of Mike and jealous of me when I sit with Mike. He wants all the attention himself.

Me, I'm getting ready for a busy May. Brandon's confirmation and birthday, my mother's birthday and Mother's Day - all within one week. As if I wasn't busy enough :).

(The picture was taken today, 5/3/07)

Evolution to Acceptance

This disease is such a long road, one in which priorities change constantly.

I remember when Mike was first diagnosed, I was selfishly upset that he couldn't drive. It may sound petty, but how many times do you look to your spouse to run a quick errand that you have no time for? Not having Mike drive was a big adjustment for the both of us.

Since Mike was often at home by himself during the week, he would look foward to getting out and running errands with us on weekends. Unfortunately, this eventually had to stop when he began his anger/agitation stage. I remember a day all too well, when we were in King Kullen getting ready to check out and he just started gettting very angry, swinging arms etc. The kids took him out to the car to relax and I quickly checked out the groceries. That was probably the last time we took him into a store.

After his 7 week stay in the hospital for medicine adjustments, he came home unable to walk or talk well. This was another big adjustment and scary for all of us. We were concerned about communicating and how we would do be able to understand his needs.

Since Mike began requiring constant supervision, I was often envious of people that could just "pack up and go" whenever they wanted to wherever they wanted. As I walked the dog at night (on our corners - just in case something happened I would be close to the house), I would look at families driving by at night and wonder where they were going - movies, out to eat, beach etc. I longed for that spontaneity.

But things happened along the way, by way of Mike being hospitalized some 7 times over 1 1/2 years. We had some close calls and it was then that I realized all the other concerns were nonsense.

Now, we all very much enjoy a nice quiet night at HOME with everyone together, happy and healthy. Being so close to losing that, we realize how important it really is. We are happy that Mike is at home, comfortable in his own home and bed surrounded by everyone he knows. After spending so many long nights at the hospital with him there at night by himself, and me at home worrying about him, it's so calming to know that he is with us, where he belongs.

Little things mean so much and I now realize that me being the only driver in the house is really no big deal.

Twitching

Twitching is a common problem with AD patients, more so in EOAD for some reason. Throughout the day and night, Mike will involuntarily jerk or twitch his arms, legs, head etc.

When Mike wakes up too soon, or with a "startle", the jerks come on more vigorously. This morning was one of those days. I'm particularly unnerved by them because he was having them frequently right before he had his Grand Mal seizure last year, so in my mind, I'm afraid that it will happen again. When this happens I rub his forehead and arm and try to relax him. After 1/2 hour this morning of constant jerks, he finally calmed down. It took me a little longer. These "episodes" come in spurts. There will be days and weeks when he doesn't have them and we love those times. Then all of a sudden, they begin. The doctors say they aren't painful to Mike and they are caused by the plaques in the brain taking over certain areas that control movement. It just breaks my heart when I see him like this.

And so begins another day...............

Always questioning, always concerned

This disease is so horrible in so many ways, but one of the most difficult to overcome is the fact that Mike cannot communicate his needs to us.

I have come to "read" Mike quite well over the years. Where he cannot communicate verbally, he often tells us things by facial expressions. The problem is, in the past, when those "normal" expressions change, there was always a problem. Therefore, whenever he may make a different sound, or sneeze one more time than usual, cough, etc., my mind goes in panic mode and I think something is wrong. It's a horrible way to live, but it has been our way of life.

For example, on Christmas morning Mike woke up and appeared fine. After he was dressed, he starting making a noise (moaning). We rushed him to the hospital and it turns out he had a collapsed lung. Now everythime I hear him make a different noise, I think "could it be his lung again". When he coughs, I think, "oh my God, could he have pneumonia?" His aides as well as the kids are constantly telling me I should relax. How does one do that? It's like I am always waiting for the rug to be pulled out from under me.

Our mantra for Mike has always been, HAPPY, HEALTHY and AT HOME. If he can stay this way, we will be satisfied.