Happy New Year........

Wow, what a year it has been! We made it through Christmas without any emergencies and we hope our New Year will be the same. When I think back as to how we started off last year, I am THRILLED that we are all still together this New Years.

Recently, a few people have made some comments to me which I know they meant in a positive way. One said, "We can't believe that Mike has hung on for this long" and when I told someone that Mike was well and still at home I got, "Gee, you must be doing something right, for him to still be here". In response to both people I said, "Yes, Mike's doctors have told me that we take GREAT care of him and it shows in his health". Realistically, we can't control everything, but because of our love and vigilance, Mike has pulled through some tough times. That is something I take great pride in.

A friend of mine told me last year, when Mike was not doing well, "Karen, at the end of the day you can honestly say that you did EVERYTHING you could for Mike. You will have no regrets". That simple statement has helped me through many tough times. I know I have exhausted myself taking care of Mike and making sure he's well taken care of. I know when the time comes, it will be because God's will. It will not be for the lack of our love or care - it will just "be time".

Each day we have with Mike is a gift, in fact we have that saying in our front hallway - Every day is a Gift. We have been blessed in so many ways and it is my honor to take care of Mike. Courtney and Brandon have learned such valuable lessons in life, lessons that will make them compassionate and loving adults. All our lives are richer in faith.

As I look back to where we were last year, I am very thankful. At that time, I didn't think Mike would still be with us. We were given another year, something many people aren't lucky enough to have. One day at a time. Another gift to appreciate.

A Happy, Healthy and Blessed New Year to Everyone............

Merry Christmas To All....

I just wanted to wish all of our friends and family a wonderful Christmas and a healthy and joyous New Year.

We have been so blessed through the years with the love and support of so many people, we could never have made it this far without all of you. Your love and support, no matter how small or insignificant to you, has made an impact on us that we will always remember.

We also want to wish all the other Alzheimer families strength, and wonderful memories to treasure this holiday season. I will once again pray that the coming year brings breakthroughs in research so this hideous disease will never hurt another family again.

Our love to all.................

Hugs

Hugs are one of the things I miss the most from Mike.

Getting hugs from my children, friends, co-workers etc. are all wonderful and give me the strength sometimes when I need it. But we all know that there's NOTHING like getting a hug from your husband/wife. You have a connection with that person that cannot be shared with another and a hug from them gives you an emotional uplift and strength that can't be compared to any other. I hug Mike all the time. He cannot communicate verbally, so I am always connecting through touch. I pray that he feels my love and support through my hugs.

I miss getting a hug like that. I miss that intimacy, the comfort and protection that can only come from being held by the one you love.

Lessons Learned - Life is Funny

Last year around Christmas time, we were EXTREMELY BLESSED to have some financial help from some guardian angels at my husband's job. The outpouring of support was almost too much for me to accept. So in short, last year we were OK financially. Sadly though, on Christmas morning, Mike was rushed to the hospital with a collapsed lung. He spent the next month in the hopsital, at times touch and go. I was "OK" fiancially, but a mess emotionally.

This year, it is the opposite. To date, Mike's health has been steady (I won't say anymore for fear of jinxing). His mood has been great, so emotionally we are VERY STRONG this year. Financially, I'm having a tough time. It's been a difficult year and I'm feeling it more now around Christmas time.

I need to keep reminding myself of what's more important. Last year, while I didn't have to worry about my bills for a while, I was out of my mind with worry about Mike. This year, I am more relaxed about Mike, but concerned about our bills. I wonder if there will ever be a time when I can relax about BOTH.

Sorry for being a "downer", but this IS the reality of dealing with a horrific disease like Alzheimer's at such a young age, with 2 young children to care for, and a home to run.

Unbelievable

Earlier this year when Mike came out of the hospital, I spent almost 3 months trying to get him into hospice. I was told by our Medicaid agency that we couldn't do that without losing some of Nathan's hours. I went to social services and even contemplated an appeal. I was physically and mentally exhausted. I gave up the fight.

As I have previously mentioned, at the end of Octber, 2007, Mike's Medicaid agency changed. I was upset when they told me his nursing services could not be continued. Today they called to tell me that there is a hospice program called "End of Life Care" that we can enroll Mike, wherein he could get the same services he has now (same hours for Nathan) PLUS nursing care and home visits from a doctor. Is it me? Am I crazy? Isn't this what I tried to do months ago and was told "NO". When I questioned the rep about this she said "apparently your previous care manager lacked this information". That's an understatement!!!!

Needless to say, I will be looking into this program. I am told it is designed for people who have 6 months or less to live, but they CAN be re-evaluated after that time for possible renewal. As with all Alzheimer patients, no one can predict the end. Mike was administered Last Rites in January and look where he is now. Still here with us.

Always Something

For the last 10 months, we have had a nurse come by twice a month to check on Mike. Normally, this wasn't covered, but his Medicaid agency somehow worked it out so that it was possible. The same nurse has been attending Mike for 10 months. She is wonderful and knows Mike inside and out. She has caught things in the beginning BEFORE they became a problem that could have eventually lead him to the hospital.

At the end of October, his Medicaid agency was bought out by another agency, and they do NOT find it necessary for Mike to have a nurse come twice a month to check on him. This ASTOUNDS me. It is SO MUCH CHEAPER for NYS, for us to keep Mike at home with us and out of a nursing home. You would think they would have no problem covering a nurse's visit twice a month since the alternative would cost so much more. WRONG. They are pulling Mike's nurse's visits. I am so upste because it was so comforting to know that I had someone to call to come and check on Mike - instead of having to schlep him back and forth to the doctor (which we have to do via ambulette now). I am trying to remain positive and hope that we can somehow work around this, but I'm not confident.

All I ever wanted to do was keep Mike at home. It seems I am often up against the most difficult odds and instead of agencies working WITH me, they work AGAINST me.

Happy Thanksgiving

I really wish I could say it was a great Thanksgiving. While Mike is doing fairly "OK" and everyone else is fine, it just didn't seem like a "Happy" Thanksgiving. Mike coughed ALOT during breakfast, didn't have much lunch and ate fairly light for dinner. He was coughing a little for dinner. As usual, I worry and begin to wonder. Is this the beginning of Mike not being able to swallow....or is it that he has the cold we all had? Either choice is not good.

I wonder what Mike will be like when he can no longer swallow. Will he still be laughing and smiling the way he is now, or will he enter further into his own world and sit with an even blanker stare? Will we know when it's going to happen? We will ever be ready?

I can't say that Mike is at that stage now, but on days like today, I always get scared. It is a reminder of what lies ahead, and I don't think we will EVER be ready for it.

A Nice Respite

This past weekend, I had the chance to go out with some old friends, and I had a wonderful time.

These friends were Mike's and mine from where we met - twenty something years ago. I laughed so hard that night reminiscing about those "good old days". It was such a wonderful night and a much needed respite away from the everyday struggles of caregiving. We scheduled the dinner for after I got Mike into bed for the night. My brother stayed at our house with the kids and Mike. I went out knowing that everything should be "OK", although I was somewhat on edge because as I know very well, with Mike, anything can happen.

Another nice surprise awaited me at the restaurant. My friend Joe called a mutual friend that we hadn't seen in MANY years and she agreed to go to dinner with us. When I walked into the restaurant, she was sitting with Joe and his wife. At first I had no idea who she was, then it hit me. We had all worked together and the stories just started flowing. The only person missing was Mike, and I felt it. Of course, he was a part of many of the stories, so in actuality, he WAS with us that night.

Coming home, my mood was very light, I felt "happy". It's so amazing what a night out will do for you. But then Courtney started acting strange and I asked her what was wrong. I think she was a little insecure that I had such a good time without Mike. What she doesn't realize, is just how much I missed him. One of my dad's most memorable sayings was "Life is for the Living". After his death, I realized just how profound that saying is, and after Saturday night, I realized how important it is. Even though I missed Mike, I was still able to have a good time. Mike will ALWAYS be in my heart.

Being Sick

One of the worst realities of being a caregiver is having to take care of a spouse when you're not feeling well yourself.

This past week, both Courtney and Brandon were sick (sore throats and Brandon's went into a sinus infection). Last night, I began to get that sore throat. I tried all I could to stay away from Mike, but sleeping in the same bed makes that difficult. I was up most of the night, trying to cover my mouth and staying as far away from Mike as possible.

Taking care of children when they are young and ill is, usually a team effort by both parents. Taking care of an ill spouse when you are sick is like flying solo. It's only you, and there are no rest periods.

Nathan is Back!!!!!

Nathan came back yesterday and Mike seemed pleased. Since Mike cannot talk, we often say that his facial expression speak louder than words. He gave Nathan a BIG smile yeserday. By the end of the day, he ate well (all 3 meals as he does with Nathan), drank well and Nathan even gave him a haircut. By the time I got home, Mike was quite relaxed. He slept very well.

It always amazes me just how much of a difference it makes when Nathan is not around. He and Mike have such a special bond - it's so good to see.

Meanwhile, our substitute aide Sandra called this morning to say Hi. While she may not be Nathan, she was ABSOLUTLEY wonderful with Mike and we're hoping that she can work for us again when Nathan goes away the last week in Dec.

On a different note, Mike's toe is healing well. I will have the Dr. look at it tomorrow, but both the podiatrist and Fran (our nurse) came by yesterday and said they were pleased with the way it looked.

I think we made it

Today is the last day without Nathan. In a strange turn of events, We are all going to miss the substitute aide (Sandra). She was great for Mike and lot of fun to have around. I have already askd her if she would be available for the end of December when Nathan goes to England for his daughter's wedding.

This morning I got a frantic call from my mom. She was at the house and Mike started coughing uncontrollably - she didn't know what to do. Of course, I'm at work and I feel helpless. Since Nathan was not there, and Sandra doesn't know Mike well enough, I had no idea whether this was unusual for him. Of course, my mind races and I begin to wonder, as I always do when Mike coughs - is this the part when he begins to have trouble swallowing? I can't concentrate on anything and my mind is only focused on him. Wednesday he coughed alot and was very lathargic, but yesterday he was perfectly fine. I know Mike has off days, but they were to the extreme. In between all this, he's still smiling and laughing. That's what we gauge things on. We feel if he still smiles and laughs, he's OK. I'm sure that's not a medical gauge, but it's ours.

12 Down....

Well, this is the third and final week of Nathan's vacation. I can honestly say, it wasn't so bad. The agency FINALLY pulled through and sent a VERY capable, friendly and hardworking aide. I will actually be sorry to see her go.

Today Mike is not having a good day though. The guessing game begins....His blood pressure seemed good (to rule out dehydration), his breathing seemed "normal", no fever, good color...BUT his head is drooping and he's not eating or drinking as much as he should. He has had a problem with his toe for the last 2 1/2 weeks. The podiatrist is scheduled to come back tomorrow. It had been infected and he was given an antibiotic. It seemed to be doing OK. Then Saturday night, it got REALLY red and swollen again. The podiatrist came back on Tues. and said she didn't believe it was infected again, but that it did NOT look good. Could this be causing Mike discomfort? Could there be a deeper infection? Things would be so much easier if he could talk and explain what is bothering him. But then, life is not easy. So the guessing game continues and we try to rule things out. I am praying that he will wake up from his nap with more energy to make up for his lack of eating and drinking so far today. But until then, I worry that it will not get better, and he will be back in the hospital.

Happy Anniversary

19 years ago today, Mike and I were married. Our wedding song was "Follow You, Follow Me", by Genesis. This was one of the only things in all the wedding planning that Mike really requested. I was showing Mike's aide our wedding album today and how sad is it that all my friends in the wedding party are no longer in contact with me. This wasn't the typical, we grew apart and went seperate ways. It was more of an example of Alzheimer's Disease Alienation. I wonder how different things would be if I had that much more support from friends.

Of course, the sadness is also there from imagining what might have been. All our hopes and dreams are no longer. I always wonder what Mike would think of Courtney and Brandon and the young adults they have become. Knowing how proud he was of them when they were younger, I can't even imagine what he would think of them today. I wonder how Mike would have aged and whether he would have kept his sense of humor. I wonder what we would have done to celebrate our day. Instead, I sit quietly at home with Mike and the kids. I am thankful we are all here and happy and healthy.

Happy Anniversary Mike. Love Karen.

8 Down.....7 to Go

Not much going on, although today Mike seems to be a little off. I ALWAYS get concerned about these days, because I never know whether it's just the day, or something else. He didn't eat or drink as much as the last few days, but he DID eat and drink. He smiled a few times, but not laugh hardily like he has in the past. I guess I need to listen to my children. They always say that everyone is entitled to a bad day. I know better though and pray that that's all it is. With his health as fragile as it is, I get concerned that he can't afford to have a bad day. He needs all the nutrition and hydration he can get.

6 Down, 9 to go..........

Everything is still "status quo" and we're liking it. Last night Mike slept without hardly any jerky movements, so I actually got some rest. I can only hope that tonight is the same.

How weird is it that I was contacted yesterday by a Japanese production company. It appears they may be interested in including us in a documentary they produce twice a year showing people with rare medical problems and how they deal with them. Even if nothing comes of this, how weird is it that a Japanese company is aware of us and our situation??? Maybe what we are doing actually IS raising awareness. I feel like our efforts are being noticed.

Week #2

Well, this is week 2 without Nathan. God has sent an angel named Sandra to care for Mike, I just hope she can come back for week #3. All is status quo there and for that I am thankful.

Last night, Mike had MANY more jerky movements, in fact it was practically non-stop from 8-12:00 a.m. I actually gave him additional medication at that time, which made me more concerned because I am so afraid to give him anything while he is sleepy for fear that he will choke. I just could not get to sleep and needed to do something. It's at those times that I feel most vulnerable. It's then that I realize just how alone I am. If I was caring for a parent, I would most likely have a spouse to help keep me strong, but because my spouse is the sick one, I am all by myself. I get scared and have no one to lean on, no one to hold me. Sometimes I just want to "step away" from the situation and I realize that I can't because there would be no one else to "step in". There is no one to share responsibilities with, nor anyone to comfort me. Last night was rough and I can only hope that this cycle will end soon. I guess most people would perceive me as the strong type, but the reality is, that inside I am as scared and frightened as anyone else. Nightime is the time of day I dread the most.

1 Week Down, 2 to Go......

Well, thankfully we made it through the 1st week. The aide that started on Tuesday is wonderful. She's great with Mike and seems to know exactly how to handle him. When the agency told me she would work this week, I asked if she would work the next 2. They said that they would let me know. When I got home on Fri. I asked her if the agency called her, she said no. Meanwhile, they hadn't called me either. So, I am up in the air as to whether Sandra will be coming back next week. Nothing new with this agency.

The repairman came today and thankfully, the dryer WAS repairable. It was much cheaper than a new machine.

Mike is doing well and we can only pray it stays this way.

4 Down, 11 to go.....

Obviously it's a countdown to the number of days before Nathan returns.

Today went better than yesterday. We still have no dryer and my car is still not inspected, but Mike did better. He ate all his meals and drank all his drinks. When I got home from work though, he was coughing alot. It made me nervous. I checked his BP and lungs. All seemed OK, but he kept coughing. Of course, I was concerned. Then Brandon and I got Mike into bed and as we were moving him around, he let out a few good burps. I believe that was the problem. I remembered that Nathan always said that many times Mike would cough when he was trying to burp.

Tomorrow we will be meeting the Newsday reporter to talk more about our life. No matter how much or how little we are in the article, we will be glad that attention is being brought to the realities of Alzheimer's Disease and the obstacles caregivers face.

3 Down, 12 to go.........

We survived another day.

The podiatrist prescribed an antibiotic for Mike's toe yesterday. It was delivered last night and strangely, I took a moment to read the instructions etc. I noticed it said that we should tell the doctor if the patient has seizure disorders. Well, of course, my eyes popped, as that is the thing I HATE THE MOST. I called his regular doctor this morning and he agreed the antibiotic should be changed. The podiatrist had no idea of Mike's medical history and I am so glad that I read the instructions.

The substitute aide is doing well, although I am nervous that she is not getting Mike to eat and drink as much as he should. This is a REAL concern for me, as he has been dehydrated in the past. As much as I tell these aides how important it is to have Mike at least drink, they don't seem to get it. I will continue to push her and hopefully, she will "get it". Otherwise it will be a vicious cycle. If he doesn't drink, he becomes lathargic and it will be even more difficult to get him to drink. Thats' when dehydration settles in. uuuuggggggghhhhhhhhhhhhhhh!!!!!!!!!!!

And oh yeah, I almost forgot. This morning as my mom was helping with the wash, I smelled something burning. Our dryer almost went on fire. The entire inside was all burnt. Now I have to figure out when I will have the time to arrange for a repairman - if it's even possible to fix. My car's inspection also expired on 9/30, I have no right turn signal and my oil is very low. When will this end??????????????????

2 down, 13 to go......

Well we got through yesterday unscathed. The aide that came was not good at all, and as I have found to be more common than one would think, she argued with me about things I needed done with and for Mike. I stayed home and wound up doing most of the things on my own. My mother had been ironing the kids clothes for school and the aide actually asked my mom to iron her work shirt. Dumbfounded by her nerve, my mom did it. Later the aide was annoyed when we had no "snacks" that she liked, so she left and went to buy some. She was supposed to work until 7pm and at 4pm she told me she had to leave at 5. By that time, I was more than happy to see her go.

Today's aide seems VERY reliable and knowledgeable. She is only supposed to work for this week, but I am going to try to get her to stay for the 3 weeks. It is so difficult to find someone like her. Today the podiatrist also came and confirmed that Mike's toe is in fact infected. She cleaned it out and ordered an antibiotic for him. She said she hopes it's better within 3 days and also explained that it could have been quite serious - in fact it could have sent him to the hospital. More praying will go out that his toe heals and nothing worse happens.

Not out of the Woods Yet

Just when Mike came home and began his recovery, we found out that Nathan will be away for 3 weeks instead of the two he had originally planned at the end of October. His Aunt passed away and he extended his vacation so he could attend the funeral. Of course, he deserves a vacation and MUST be able to attend the funeral, it's just that the timing is all wrong. I am worried enough about Mike getting better (he's still moaning a little and has some diarrhea - sorry?!), but now I have to worry that a substitute aide will not know Mike well enough to know if something is wrong. I'm sure I will not be in work alot, which is always a concern for me. The kids just don't understand why I am so on edge, and they get frustrated with me when I show my concern. This worry drains me.

If we make it throught these 3 weeks unscathed, I still have the end of December to look forward to when Nathan again, takes another 2 weeks off to attend his daughter's wedding in England. Mostly good things for him, not so much for us.

Mike coming home today

Good news, Mike will be coming home today. They treated him with antibiotics for 5 days and he seems to be back to "normal". I never got an answer as to what caused the fever, but I truly believe it was from the flu shot he got on Friday.

We will continue to pray that he does as well as he was doing before and that we make it through Nathan's 2 week vacation at the end of this month. More stress...............

Mike had an EEG and CtScan yesterday, but I have not spoken to his doctor. The resident on the floor, of course, keeps talking about possible pneumonia, but we expected that. It seems that whenever an Alzheimer patient is admitted with a fever, that's what they ASSUME. Mike has been eating and drinking well. They have him on 2 antibiotics and a blood thinner, which I assume is preventative because of his history of clotting.

I was in tears when I left last night. As I was giving Mike a kiss and telling him I had to go back to work today, it appeared he said "no". He gave me a frown also. It seemed as though he really understood. Of course, I delayed my leaving, and the kids and I stayed a few more minutes. When I went to leave again, he lifted his hand and appeared to wave. I left with tears in my eyes and prayed that IF he DID understand, he knew I would be back tomorrow.

I hope Mike will be home in a few days and all will be back to "our normal" soon.

Update

Mike is still in the hospital and is scheduled for an EEG today. He appears to be himself again, but as of now, I have been given no answers as to what caused all this. I'm still beginning to believe it was a reaction to the flu shot, since he had been doing so well for so long. They say there's a "spot" on his lower left lung, but they said the same thing when he was in the hospital in January. When they check his lungs, they are clear. His regualr doctor is back today, so I'll see what answers I can get.

Mike in Hospital

Mike was brought to the hospital last night and was admitted today. He was fine all day yesterday and even went to the Dr. for a regular check-up. All was 100% and the Dr. was thrilled with Mike's condition. Last night, around 7pm, he started to moan and breath heavy. We thought of last Christmas with the collapsed lung, so I called the Ambulette. Courtney and I went, and Brandon stayed at home with my brother.

I was so focused on his moaning and breathing, therefore, so were the doctors. When Mike was brought in, he had a 103 fever. They started him on an antibiotic because they thought they saw something in his lungs (i.e. pneumonia/bronchitis). My mom came to relieve Courtney and I at 8:30 this morning. By then we were both up for more than 24 hours STRAIGHT. We came home, rested and we're heading back there now. Oh yeah, in the ER this morning, Mike had another grand mal seizure. That's when I became hysterical. The hospital staff was EXTREMELY understanding and spent time with me as I was there by myself (Courtney had gone to the waiting room to try and get some sleep, so thankfully she did not witness it). This could have been caused by so many things. As I woke up after my 4 hour rest this morning, it hit me like a ton of bricks and I called the nurse to have them check Mike for a UTI. Since he had NO SIGNS WHATSOEVER of a cold, I couldn't understand why he may have pneumonia. This way they will now check for another source of infection.

The guessing game begins, as I try to once again sort out what is wrong with Mike because he can't tell us himself. Hopefully, he will not be in long this time and we will get back to a regular routine in no time.

Please pray for him.

Blue Sky

Each time I go outside and see a bright blue sky, I'm sad. Most people don't even notice the sky, but I do. When I see an unusually bright blue sky, my heart aches. Something so ordinary, so mundane, but yet so wonderous - something Mike no longer has the ability to appreciate.

Gotta Love that Smile

This picture was taken about a week ago. Lately, Mike has been smiling and laughing ALOT and we're loving every minute of it. That smile is all I need to make it through a crazy day at work.

That's What Friends are For....

Today, our friends Pat and Joe, came over for a visit. Although we hadn't seen them in a long time, when they came over, it felt like we've been in touch for years - a sure sign of a good friend. I was trying to "read" Mike to see whether there was any recognition, but I couldn't. There were some raised eyebrows and smiles and I really hope Mike knew they were there. I had a good time visiting with them, but got very sad after they left. This disease is so alienating, and you don't realize how much you don't have, until you get a little taste of "normal". Most people would take it for granted to go out with friends and reminisce. While Mike was eating lunch, we headed to the backyard and talked. It was such a simple thing, but something I enjoyed immensely. Thanks to my dear friend Pat, he once again brought up my mishap with the skunk on our way home from visiting a friend in Rhode Island. I don't think he'll EVER let that go. It was really good to laugh again. After Pat and Joe left, I felt sad. Sad that Mike couldn't be a part of our conversation, sad because it felt like yesterday when we were all so young with no worries. Life happens - but if you're lucky, you will have friends who will always be there for you, NO MATTER how long it's been since you've seen them.

If you know anyone suffering from some sort of illness, please, PLEASE, go and visit. It will mean the world to them.

(Picture taken Sat. 9/22/07 - Pat, Mike and Joe)

Memory Walk Success

I am happy to report that as a team,
"henley's
heroes" raised $1,620.00 for the Alzheimer's Association's Memory Walk. The day began as a rainy, cold day, but as we began our second turn around the Restoration, the blue sky came through and it was sunny for the rest of the day. Courtney and her friends and Brandon and his friend had a great time. I don't think their friends really understood what a wonderful thing they were doing, because they were having so much fun. I was proud of everyone that walked with us and the support that we received.

The last few days I've been once again drawn to the reality of this disease. After Mike's hospitalizations earlier this year, I was always on edge for everything that I thought would be a problem. I became glued to the Alzheimer Association's Message Boards and read every post by anyone experiencing "end of life" issues for their loved one. After all, Mike had been given Last Rites back then and I had no idea what to expect. It was Courtney that finally got me to stop going to the Boards because I began to "imagine" things were happening with Mike. In the process though, I learned what happens to patients as they near the end. Right now, Mike is having issues with "glob" in his throat. He can still cough it up and clear his throat, but I begin to go into panic mode and worry about what will happen next.

This disease is ALWAYS UNPREDITABLE and never has a term such as roller coaster ever been closer to the truth. The families of Alzheimer patients are CONSTANTLY wondering what will be around the next turn. We can only live in the present and it becomes very difficult to plan anything for the future.

Memory Walk Events

This coming Saturday, we will be walking for the 3rd time in the Alzheimer Association's Memory Walk. My goal was to raise $1,000.00 (we raised $650.00 last year). To date, we have $1,300.00. I am THRILLED.

Courtney recruited her friends to walk with us this year. They came by on Saturday and tie-dyed shirts so we will all have our official team shirt. We decided on the tie-dye theme a few years ago because we thought it was appropriate for Mike. He's young and he should be represented as such. Before we tie-dyed, Courtney and her friend set up a "Refreshment Stand" on our corner to raise more money. I was hoping to raise $100.00. Much to our surprise, people were very generous and we raised $258.00. After all that hard work, I BBQ'd for Courtney and her friends. For dessert, we had cookies, brownies and a surprise birthday cake for Courtney's 16th birthday. It was 9/5 and I felt so bad that I couldn't give her a party that she deserved. She always wanted a cake with her picture on it, and that's what she got. She was excited and surprised and I was happy that her friends were there to enjoy the moment with her.

Pray for good weather on Saturday. Instead of the 7 people that walked last year, this year we will have close to 20. We wanted to make a statement and we hope we succeed.

I hope to walk every year until a cure is found. Thank you to all of those that helped us exceed our goal. Your love and support is what keeps us strong.

Time

It's hard to believe that next week Brandon will start his orientation for 9th grade. Where does time go?

Courtney was 9 and Brandon was 7 when Mike was diagnosed. They are now 14 and 15. Their entire life has been dealing with Alzheimer's Disease. I will ALWAYS wonder if I did the right thing in keeping Mike at home with us. Did I take too much time and attention away from the kids? Could I have done more, had Mike's 24/7 care not been in my hands? I question this always, but the kids always tell me they would have had it no other way.

We have been so busy around the house this summer, I felt like I haven't seen Mike alot. We have spent many hours in the back and front yard, trying to make our property not only look nice, but REALY nice. We all need something to feel good about. We are also painting Courtney's room (Brandon's was re-done earlier this year). Actually, Courtney has so far done all the priming on her own and I'm VERY proud of her. We have also been blessed to receive a "gift" of carpeting, but before it can be installed, we've had to rip out the existing carpeting. My hands have the bruises and cuts to prove it. It very difficult to remove carpeting from stairs :(

I found out today that our weekend aide will not be in on Sunday and we will have someone else for only 1/2 the time. It's supposed to be Mike's aide from 2 years ago and if he does show up, it will be interesting to see Mike's reaction to him. Because the aide will only be working until 2pm (instead of to 7pm) I will have to care for Mike. Of course it will be difficult because the weekend is the only time I have to do everything, but at the same time, it will be my much needed re-connection with Mike. Since I feel I haven't been spending much time with him these past weeks, it will give me the one on one time I need. I hope he will enjoy it as much as I do.

Summer Update

I am relieved to say that all remains "status quo" with Mike. I recently took a week to do some day trips with the kids. We went to Splish Splash (a water park), into NYC, to the beach, to the movies and lunch and got their uniforms and books and supplies for school. All pretty everyday things, but we all enjoyed this much needed time away. Each time we went somewhere, I would have an overwhleming sense of sadness. Mike should have been there with us. He LOVED the water and the city. It just isn't fair that he could not be a part of our lives doing the things I know he loves. I very rarely say that things are "unfair" because who am I to think I'm above everyone else? Who would this disease be fair to? Exactly. But recently, I have been having a difficult time emotionally. I guess as the kids are getting older, and I see the young adults they have become, my heart aches that Mike does not fully understand. His children were his life and he would have done anything for them. They were his VERY FIRST concern when he was diagnosed. Now here they are in High School, maturing into beautiful, caring human beings, and he cannot appreciate all that they are. I pray that he knows, somehow, how proud he would be of them. They have not let him down, and for that I couldn't be prouder.

We are gearing up for our annual walk in the Alzheimer Association's Memory Walk which will be in Sept. Courtney has recruited a bunch of her friends to walk with us so we can make a bigger statement. We hope to match our goal of $1,000.00.

That Special Smile

This picture was taken of Mike 2 weeks ago. It was a beautiful sunny Saturday and we decided to take him outside. It's somewhat of a project that requires perfect timing - it has to be in between meals, when he's awake, when it's nice outside (not too hot, not too cold). It was a perfect day and we took advantage. It was evident by his smile that he loved it also.

It's amazing what we all take for granted.

We appreciate EVERY smile we get from him. His smile lights up the room, wherever he may be.

Everyday is a gift that we truly appreciate.

Summer

The kids have been working at a summer camp in the grade school that they graduated from. Courtney has kids going into 2nd grade and Brandon has 4th graders. Let's just say, the kids keep them very busy. There are about 20 kids in each group and 2 counselors. When it's hot and humid, it's difficult, but otherwise they do different activities and crafts throughout the day. Camp is only for the month of July and it ends at 1pm, so it gives them a chance to relax the rest of the day. Of course, the pay at the end of each week, however small it may be, doesn't hurt either.

Courtney went for her orientation for being a hospital volunteer already, but today she has her "interview" to determine in what area of the hospital she will work. She wants to request the floor that Mike was on for a month because the nurses and aides were all so wonderful. I hope she gets it.

I will be taking a week off in August to do things with Courtney and Brandon. Our vacation days are over at this point (with Mike's health so unpredictable) but I thought I could do "day trips" with them. We have a few things lined up and they should have a good time - hopefully.

Life in Limbo

I was talking to a friend the other day about the fact that Courtney will be turning 16 in September and will be able to get her learner's permit for driving. The realization that it will be ME that has to teach her to drive, hit a nerve. I mentioned to my friend that since I was a "single" parent, it was just one of the experiences I would get to share with my children. Then it hit me, I am NOT a single parent. My husband's "body" is here with us, but his "person" is not. It was then that I realized that for the last 6 years, the children and I have lived in limbo.

We cannot and will not mourn the loss of Mike, because Mike is very much with us. Yet, we do not get the chance to share all our special moments with him either. My children have gone through confirmations, graduations, birthdays etc. with their dad, but at the same time WITHOUT their dad. We can never be quite sure what emotion to show, because our lives are in constant limbo. We are happy in the moment, but sad when we realize that Mike is not with us.

Don't Give Up

It's truly amazing to me how God works. Just when I think I can't do this anymore, he gives me signs.

One of my favorite singers is Josh Groban. His songs always give me renewed strength. My past favorites of his are: You Raise Me Up and You're Still You. I found a new favorite just when I needed it..... You Are Loved (Don't Give Up). The kids got me tickets to see him on July 25th and I look forward to that night (although I still don't know how I will manage it with Mike). I share the words to that song with you today.
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Don't give up, It's just the weight of the world. When your heart's heavy I will lift it for you
Don't give up, Because you want to be heard, If silence keeps you I, I will break it for you.

Everbody wants to be understood, Well I can hear you
Everybody wants to be loved, Don't give up - Because you are loved

Don't give up, It's just the hurt that you hide, When you're lost inside, I, I'll be there to find you

Don't give up Because you want to burn bright, If darkness blinds you I, I will shine to guide you.

Everyrbody wants to be understood, Well I can hear you.

Everybody neeeds to be loved, Don't give up.

Because....you are loved.

Don't give up, It's just the weight of the world
Don't give up, Everybody needs to be loved.

You are loved.

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As I was listening to this song on my way to work, a truck passed by. A regular delivery truck, but what was weird about it, was that on the back, for no apparant reason, it was written, "The Lord is my light, the Lord is my strength". Isn't that weird? On the back of a regular delivery truck to see that written. Yes, he works in mysterious ways, it's nice to know that I am not alone.

YOU CAN HEAR THE SONG BY CLICKING THE LINK TO THE RIGHT. ENJOY.

Sleep

It seems like since the beginning of June, I haven't gotten more than 4-5 hours a sleep a night. First it was Mike's "cold". His coughing and raspy gurgles kept me awake and scared. Next came his coughing "spasms". He would cough so hard and for so long, at times it seemed like he couldn't catch his breath. Now, the "twitching" came back. He seems to go through periods of having it bad, then not having it at all. The twitching has begun again. It usually starts around 5:30, then subsides once he gets his medicine. Last night he had episodes at 11:30, 1:00, and 2:30. Each time I lay and wait, I try to calm him down- as if my words and stroking are magic - as if he has control of these movements. They unnerve me and upset me. Does Mike know what's going on? Do they bother him? Is he scared?

Then after I think I have reached my limits, I am given "signs". Just today I read an article indicating that when a person with AD is admitted to a nursing home, the disease appears to progress more quickly. After I read something like this, I realize that all the sleepless nights are worth it. There is no place else I would want Mike to be than at home, with all those that love him, in the place he's most comfortable.

Questioning

Last Thursday Mike fell out of the Hoyer. I was not home when it happened and only Nathan was in the room with Mike. He appeared to be OK that day. Friday he was also "OK". On Saturday though, he started making groaning sounds, but only when he was being transferred, moved around, or when he had to cough. I started thinking that maybe he bruised a bone or hurt a muscle in the fall. In all other aspects (eating, drinking, sleeping etc) he appears to be ok.

One of THE WORST things about this disease is Mike's inability to communicate. Am I assuming he's hurt from the fall, when maybe something else is going on? Is the "groaning" indicative of something more than a bruised muscle or bone? I will be watching and waiting. The down sides of taking him to the hospital to be checked out are so numerous (trust me, we've been that route NUMEROUS times), that I am trying to avoid it. I pray that these sounds of discomfort will slowly disappear and that my worries will be for naught. It's both frustrating and sad that Mike cannot tell us what's wrong. The pressure on me to be able to determine when something is "not right" is so strong, that at times it's overwhelming. What if I'm wrong?

Alzheimer's Disease is indeed a cruel and unforgiving disease.

Summer Begins

The kids are so excited that school is FINALLY over. Brandon finished the school year by taking the 10th grade biology Regents (he just finished 8th grade) and scoring a 93. WOW!!! We haven't gotten Courtney's grades yet, but I have no doubt they will be great. They will be working at their grade school's summer camp again. They really seem to enjoy it since they know all the teachers and students. Courtney will be going to her orienation on July 6th for her volunteer job at the hospital this summer.

Upsetting news - on Wed. Mike fell out of the Hoyer as Nathan was transferring him to the Geri Chair after his nap. Thankfully the kids, my mom & Walter were there to help get him up. I have been watching Mike for any signs of distress, but so far so good. It seems that he didn't so much fall, as he "slid out", according to Nathan. Getting a call from Courtney at work though saying that "dad just fell" made my stomach drop. It's always something :(

Alzheimer's Foundation of America wrote a piece about Mike for a mailing they will be sending out to raise awareness and funds for the "Quilt to Remember". I am thrilled that it will be displayed in Garden City in November so we can go see it again and see how much it has grown (we were at the inaugural viewing last November in Central Park). It is such a wonderful tribute to all those suffering. As AFA says, "it gives a voice for those who can't speak for themselves".

Happy Summer to All..........

Crazy Weeks

The last two weeks have been difficult to say the least. Mike has been battling this cold, which seems to slowly be coming to an end. The whole time though, was very stressful. The "glop" in his throat was what got me concerned. Not being able to spit it out, always concerned me. Thankfully, he has been sneezing alot and that's creating the same outcome (no pun intended). The last 4 nights though have been terrible. Mike has been waking up having horrible coughing fits that sometimes make him seem like he cannot breath. They often last up to an hour. It's EXTREMELY unnerving and scary, especially when I am all alone at night trying to calm HIM down. Without jinxing the situation, they seem to not be lasting as long, but every night I go to bed afraid and pray they will not happen again. I'm not sure if Mike understands what's happening or whether he can control them.

Brandon graduated Sat. from 8th grade which was, of course, bittersweet. He was Solutitorian and had to give a speech, which he wouldn't let anyone of us read or review. I was nervous for him, but once again, he came through with flying colors and made me very proud. I couldn't believe he wrote and presented such a beautiful speech. Of course, all I kept thinking that day was how proud Mike would be of him and how much I missed having him there with us. When Brandon started that school at age 3, our lives were so different and we held so much promise. How things have changed.

I always pray that I have not taken too much time away from Courtney and Brandon by keeping Mike at home. While they have consistantly told me that they would NOT want him anyplace else, only time will tell if I made the right decision. I pray that they have learned unconditional love, compassion and patience - all of which Mike had in abundance. This is apparant by the love and support we have gotten over the years from Mike's co-workers and friends that knew him well. I am always thankful when the kids get to hear stories of Mike from others, of how much he did for people and what a wonderful person he is. Their kind words are a testament to Mike and all that he is.

Loneliness

I'm not sure if it's the rain today, the lack of sleep, caring for Mike as he battles this bad cold or Brandon's upcoming graduation, but I am feeling terribly sad these days. I guess I realized how very difficult it is to care for a spouse with AD. When someone is caring for a parent, grandparent etc., they usually have their own spouse to help them through the difficult days. They have someone to lean one, to count on, to cry with, to get a hug from. When your spouse with AD is the person you would normally get all this support from, it's a very lonely world. When things happen with Mike, everyone turns to me to ask "Will he be OK"? When the kids are scared, they turn to me for encouraging words.....who do I turn to?

It is very different caring for a spouse. I'm sure (I hope) this sadness with fade, but for now it's here and I needed to vent.

Running on Empty

For the last 4 nights I have gotten little, if any, sleep. Mike developed a cold last week and the nighttime has been very tense. He had originally slept in our bed, but he had a few bad coughing spells, so I decided to let him sleep in the hospital bed in the LR. (Even though he sleeps on "wedges" in our bed, I felt they didn't give him the height he needed to be raised up). I needed to be near him, so one night I slept next to him on a cot, the next on his geri chair. Neither night I slept. He slept much better in the hospital bed, but I was NOT comfortable and very much on "alert". His cough is very lose, and for most people they may have been over it, but unfortunately Mike does not have the ability to cough anything up. I decided to take him to the doctor today (Last week a nurse came by twice to check his lungs - which were OK), but the only appointment I could get was 6:30 tonight. I had to quickly arrange for ambulette transportation which is hard to do, for an appointment after hours and on such short notice, but the insurance company found one. I will feel much better after he sees the doctor, and I only hope it hasn't become anything bad. Please pray.

After a few tense days, my BIL is being discharged from the hospital today. Imagine, quadruple bypass surgery on Fri. and being discharged 6 days later, it amazes me. We're all very glad he seems to be on a quick road to recovery.

Mike still has his cough. Not so much during the day, but always when he wakes up and sometimes at night. I asked his doctor to prescribe an antibiotic for "preventative" reasons and he agreed to. I just don't want this simple "cold" to turn into something much more serious. Even with the antibiotic, there's always a possibility of it turning because of Mike's low immune system, but hopefully, it will keep this illness at bay. All prayers are welcome.

What We Take for Granted

The nurse came yesterday and thankfully said Mike's lungs are clear. His BP and Temp were also OK. I am always concerned and never take anything for granted. Yesterday was a good day, so we'll see what today brings. Things can change on a dime.

This morning I got the BEST gift from Mike. Each morning as I leave for work, I bend down to give him a kiss. Today, HE GAVE ME A KISS, lip puckering and lip smack included. He hasn't done this in I can't remember how long and it made my day :) I felt lighter as I headed into work.

My BIL seems to be on the mend, so far so good. We're all very relieved to hear this and we are updated daily with my sister.

Today, Mike started a cough that I didn't like. I'm waiting for the nurse to come over and listen to his lungs, and depending on what she says, will depend on what I do. I'm not sure if he has congestion, or just "glop" in his throat. If congested, I will be checking with his doctor on treatment because I DO NOT want him in the hospital with pneumonia. I know I don't have a say, but I'm just praying that everything is OK. He's been doing so well, I would hate for him to have another set back.

BIL update

I was just told that my BIL is out of surgery (5 1/2 hours) and is doing fine. He had a quadruple bypass. I truly believe that his stress test was a gift from God, without it, who knows what would have happened. He is in his ICU room and they are trying to get him to take deep breaths and cough. It will be a long road, but one I'm sure he will be thankful for after all is said and done. We are so thankful that all went well.

Nathan should be back on Monday and Mike's been more cooperative in opening his mouth for food. Hopefully the medicine for the thrush is working. He's coughed a few times though and as many of you may know, I'm such a "worry wart". I just hope this was a passing cough and nothing will come of it.

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.

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.