Thanksgiving

These past few days we officially celebrated Thanksgiving, but Thanksgiving is something that we should celebrate every day.
I will not lie, these past 6 days have been REALLY difficult. I didn't realize the enormity of Brandon's sugery and the affect it would have on me. With Courtney away at school, he is my only helper. For the next 4-6 weeks, I will not have him to help me (He needs to be non weight bearing on his right foot). This would normally not be a problem, but since I am already caring for Mike, adding another person into that mix that needs ME, makes it all the more difficult.
Thankfully, we have Mike's hospital bed in the living room. Mike takes his daytime nap in it, but at night, he sleeps in the room with me. Brandon and Mike have been sharing the bed. Each night I have had to "make" Brandon's bed (putting his sheets etc on it) and each morning I have to undo Brandon's bed and turn it back into Mike's bed.
Since Brandon cannot put ANY weight on his foot, he can't even get a glass of water himself. Sure he can go to the kitchen and pour the drink, but he needs another set of hands to bring it to where he wants to drink it. That's just one small example, but the bottom line is, now there are TWO people that are counting on me to help them.
This weekend we were all looking forward to Courtney coming home for Thanksgiving, but Brandon's surgery took center stage. I feel really bad that I didn't get to do what I would have liked to do with Courtney. Our aide wasn't around a lot, so we lost alot of time and the time I DID have, I had to make sure Brandon was OK. Bear in mind, he's on painkillers since the surgery. He's 16 and not used to the effects they can have on the body. Anyway, needless to say, Courtney was disappointed with her visit this weekend and I can't blame her. I am even more exhausted than I thought I would be.
The one thing I DID get to do was get Brandon out of the house and I took both him and Courtney to see The Blind Side. The movie was excellent and I would recommend it to everyone. Taking all of the above craziness into consideration, I am extremely thankful. I thank God every day for my children's health, my health, our home and our friends and family. We may not have as much as some, but we sure do have more than others. The movie yesterday helped to reinforce that thought.
We should give thanks EVERY DAY, not just once a year.

Where do I begin....

Brandon's surgery went well. We were at the hospital for 12 hours. It took him a little longer to come out of the anesthesia (in case you didn't know, he had his cartilage & ligaments repaired. When he fractured his ankle in March, it didn't heal properly). He was in A LOT of pain that night. He slept downstairs on Mike's hospital bed and I was in with Mike. I felt horrible when Brandon was "knocking" on the wall for assistance for 1/2 hour and I didn't hear him. His pain has been terrible and we are hoping that it gets better every day. He will be on crutches for 4-6 weeks and totally non-weight bearing. It will definitely be a challenge. The night of the surgery, I was running back and forth between Mike and Brandon.
Mike seems to be doing better, but he has still been coughing a lot during the night.
Courtney came home for Thanksgiving. I love having her here, but I think Brandon misses his one on one time with me. Beside being uncomfortable from the surgery, he now has to share his time with Courtney.
I also found out that we won't have an aide on Sundays anymore. Apparently Medicaid will not allow aides to work for more than 60 hours a week. Mike's aide worked 10 hours a day/7 days a week, so she has to give up one of those days. She chose Sunday so she could attend Church. Unfortnately the agency cannot find ANY aides to work on Sundays. It amazes me that in this economy, people won't jump at a chance to work. But it is what it is and I will lose one of the 2 days that I had to try to relax and get things done. I now have only one day of the week to get my shopping done and everything else taken care of...unless of course by some miracle, an aide is found.
A bit of good news - NY Senator Gillebrand is trying to get a bill passed that would give more money for programs for Alzheimer's patients and help for caregivers. The story in Newsday brought to light the reality of this disease and she was made aware of issues that needed attention. We have inspired change. I couldn't ask for anything more.
Happy Thanksgiving to Everyone.

Better day

Today was a better day for all of us, bit still not great. Last night Mike slept comfortably after I gave him the suppository. His moaning stopped and eventually, so did the gurgling. Today he looked better when he woke up, but he is still not himself. His eyes were less glassy and red. When he coughed this morning, mucus came out, and I've came to the conclusion that he DOES have some kind of sinus infection or upper respiratory infection. I did not give him the Levaquin today because we are all in agreement with the fact that the medicine must have given him the upset stomach. He ate less and drank less today, because we want to make sure he's 100% before we get him back to his same routine.
I spent all last night in bed worrying about what today would bring. I worried about telling the kids that dad can no longer eat/swallow. Add these worries to the additional worries I have about Brandon's ankle surgery on Tuesday and I'm good for nothing. There are days when it just feels like it's too much to handle. I know that I will eventually dust myself off, get off my pity train and start again tomorrow.

Mike is Sick

Last night Mike began moaning. He sounded very congested and had a lot of gurgling noises coming from his throat. I tried pounding him and "rocking and rolling" him, but he would not/could not cough anything out. This morning after we sat him up in his chair, he coughed a little, but it was like he was holding back. He was very sleepy, yet he wasn't his "normal"sick. He was lethargic, but not floppy. He slept right through his nap. When he woke up, and we started moving him back into his chair, he started moaning again. I called Hospice and when their "on call" nurse called me back..... Long story short, "give him Tylenol every 4 hours for the discomfort and call on Monday if it's the same, so you can talk to his regular nurse". Why do I get these hospice agencies??? I told the nurse I would like to figure out WHAT is causing his discomfort, but it fell on silent ears.
Now my mind begins to race: Could the gurgling mean that Mike is beginning the phase of not being able to swallow? Could he have a reaction to the Levaquin they prescribed over the phone on Thursday for a possible sinus infection? Could he just have a stomach virus? You see, when he DID cough strongly a few times, he kind of threw up. I'm thinking that he doesn't want to cough because he's afraid he will throw up. I gave him an anti nausea/vomiting suppository that Hospice had left here. I hope he sleeps comfortably tonight without the moaning/pain. I HATE that he has pain and cannot tell me where it is.
Needless to say I am REALLY tired since I was up with him last night. Because I am tired, I am emotional, so I've been crying on and off all day.
Hopefully tomorrow will be a better day.

Even the Strong....

I started this blog a few years ago when Mike was sick as a way to keep my friends and family updated. I thought that if anyone "found" my blog along the way, it would also be a good way of raising awareness.
I've always considered myself a strong person. I take after my dad who did what he had to do, no matter what. He never complained, he was outwardly always upbeat and NEVER lost faith. I look back at some of my entries and it sounds to me like I complain alot, and I don't like the way it makes me feel. I don't want to complain and I don't like a "poor me" attitude, so I apologize if at times it comes across that way. I guess what I am trying to convey is how this disease can weaken the resolve of the strongest people. It can really take you down, and you don't realize it's happening. If I can feel the way I do at times, then what about people who aren't as strong as I am? It's no wonder that some caregivers break down.
This disease is a CONSTANT uphill battle. When one battle has been won, it's on to another and another, and the only way the war is over is when our loved one passes. This disease has no remission, no cure rate, no survivors.
Forgive me if at times it seems like I am complaining, that was never my intent. This blog allows me the opportunity to vent and teach others what living with someone with Early Onset Alzheimer's is all about, no sugarcoating whatsoever.

No normal for us

If there's one thing I can't do, it's provide a "normal" life for my children. Since Mike's diagnosis, we have never been able to pick up and go. Our life has always revolved around someone else's schedule - usually Mike's aides. Let me make it clear, that I do not want sympathy, I just want understanding. The holidays are coming up and chances are that Mike's aide will not be here, understandably she would want to spend time with her own family and friends. This is true for Thanksgiving as well as Christmas. As much as I love Mike, his care will take up the entire holiday day, so how much time really will I get to spend with Courtney and Brandon?
The simple things in life for most families, are an impossibility for us. This is because we CHOOSE to care for Mike at home, but even though we CHOOSE to take care of Mike at home, it does not make us less human, with emotions like envy and sadness for all the things other families can do, at a moments notice.
Thanksgiving break is coming up, and many of Courtney's friends are coming home. In planning their long weekends back, many are planning family trips/events in order to catch up on time with their families because they have been away at school. I have nothing to offer Courtney, besides maybe a movie and a day out for lunch. It isn't exciting and it's something that can be done anytime. My children are not complainers, but it hurts them when we can't steal time away to do something fun and different. The last REAL vacation we took was about 4-5 years ago. Beside our overnight visit into NYC in August, we've done nothing else.
I feel so bad that I cannot give my children the excitement and spontaniety (sp?) that they so deeply deserve.
This is our life with Early Onset Alzheimer's Disease. This IS our reality.

Better News

Mike's aide is OK. Her blood pressure and sugar levels were too high, but she is fine. Thank goodness.

Yesterday, Courtney went to Penn State to see my nephew (her cousin) perform in his last show while in the school (he graduates in May). Penn State also had a football game this weekend and hotels were hard to come by, so my sister booked a room at a hotel in Clearfield PA. It's about an hour away from Penn State, and it will be the same hotel we will all be staying in in May when we go to Steve's graduation. Courtney called when they got there amazed at the memories it brought her.

Clearfield is the place where I realized that Mike was ill. I will explain.....

One of Courtney's friends moved there, and each August, we would go for the purpose of attending the Clearfield County Fair. It was a "real" fair with baking contests, livestock contests, concerts and rides. It was there, in August of 2000, that Mike said to me, "so where is Courtney anyway". It was after that visit that we came back and made an appointment with Mike's doctor. The last time we went to Clearfield was the year Mike was diagnosed (he was diagnosed in April of 2001). The following August (2001) we went for the last time. It was sad because we always had such a good time. It was a yearly trip that we all looked forward to. When Courtney called today to tell me that the hotel they are staying in tonight was right across the street from the Super 8 we stayed in one year when a stray dog came runnig into our room during a severe thunderstorm, I was flooded with emotions. Who would have ever thought, that night, 9 years ago, when we had Brandon, Courtney and her friend Lori, jumping on the bed screaming in fear of this dog, that our life would be like this today? Not me. My mind has been racing ever since Courtney called, thinking about all that has happened since that time.
I am also tired because I was up ALOT last night with Mike. He was very restless again, shivering, making groaning noises and coughing. He seemed fine today, so I'm not sure what happened last night. I do know that I lost alot of sleep and I'm tired.

Bad News

I got a phone call tonight that has the potential of creating BIG problems. Mike's aide is in the hospital. I don't know exactly what happened, but her friend left a message that apparently she "collapsed" as she was getting off the bus tonight. They brought her to the hospital where they determined it's her blood pressure. I care about Elaine VERY much, she's a great person and wonderful with Mike, and I feel bad that my first reaction to the news was "oh no, Brandon has 3 appointments next week for his surgery. Who will be here with Mike?"

I will try not to think that far in advance and try to figure out how I will get through the weekend. Caring for Mike is NEVER a problem, but when I take care of him, I can never get other things done. My life goes into pause mode. I hope and pray, for Elaine as well as Mike, that she feels better soon.

Veteran's Day

This post was written yesterday, but I couldn't post it until today because I had trouble at home on my "u-less" computer.

I just want to take a moment to thank all the veterans of today and yesterday for their service to our Country that allows us the freedoms that we have today.
My dad was a WWII veteran, and he couldn't have been prouder of the time he served in the Navy. Because of this, we were raised in a very patriotic household and holidays such as this and Memorial Day, truly meant something. When the kids were little, and they had off on Veteran's Day, I would always take them to our local park. They had a Veteran's monument and I wanted them to understand that the day meant something - that it just wasn't another day off from school. Years later, we had my dad's name engraved in the Memorial Wall at the same park, where he will be remembered forever. The opening day ceremony was very special for my dad, and we were so happy that we were able to share it with him. He would always tell us how different things were "back then", how he actually lied when he enlisted (he wasn't yet 16) because he wanted to serve so bad. I doubt many men or women would do that today. It's a different time.
Putting all political views aside, we should be proud of our armed forces and respect them and honor them every day. God Bless our troops.

Swallowing

I finally met the hospice nurse on Thursday. I spoke to her about Mike and his mucus problem. It's nothing new, but it just seems to be getting worse. After he eats, especially at night, he builds up alot of mucus in his throat. He can still cough it out, but lately, it's been taking me longer to get him to cough it out (I do the chest pounding & the nebulizer). My concern is: the day he will no longer be able to cough it out OR the day the mucus goes into his lungs. The nurse suggested the Transderm Scops patch. Apparently, it dries up the mucus in the throat for patients who are having problems swallowing. It's meant to help with motion sickness, but it's used for this purpose also. We keep it on for 3 days and change it.
I put it on Mike on Friday, and I really haven't seen a difference. We'll wait and see. Last night he coughed alot after dinner and he brought a TON of the mucus up (sorry for the subject matter) so I'm not sure it's actually doing anything.
This hospice also started measuring the circumference of Mike's arm, which when measured regularly, will determine if Mike is losing weight. This is something the other hospice didn't do, and yet they were going to discharge him for no decline. He could have been losing weight yet how would they have been able to tell?
Brandon is also getting nervous about his ankle surgery (scheduled for 11/24). We have alot coming up with that (pre-surgical testing, medical clearance etc.), and Thanksgiving will be here before we know it. Right after that is Christmas.......YIKES, I'm not ready.

If it's not Mike, it's Gizmo......

I went to bed early last night because I was tired from the night before (I had watched the Yankee game with Brandon until 1:00 am) At 10:30, I hit the hay completely exhausted. I fell asleep, no problem. At 3:00 a.m. Gizmo began barking and barking... constantly. I worried that if he woke Mike out of a sound sleep, it would bring on a "S". I tried to ignore him but after about 15-20 mins., I finally got up to see what he was barking at. At that point I didn't care if there was an intruder - enough was enough. I checked out the house and the only thing I saw was that our back light had gone on (sensor) which was most likely triggered by the wind. I grabbed Gizmo and brought him back into bed.
Gizmo began his life with us as a crated dog, but when Mike began going to the hospital frequently, I let Gizmo sleep on the bed with me. - company for both of us. Big mistake. When he jumps off the bed in the middle of the night, he cannot get back up. He then cries, and whines and pulls at the covers until I slide myself out of the corner of the bed and pick him up. There are nights when I am up and down with him many times.
Gizmo came back onto the bed and I was petting him with one hand and holding Mike with the other, trying the relax the both of them. After another 1/2 hour of this, I saw he was still jumpy and was ready to bark at any moment. At 4:00 am I finally grabbed Gizmo and went to sleep on the couch. So last night, Mike was OK, but Gizmo kept me awake.
As for the college situation, today is another day. I woke up renewed and ready to face our struggles. I'm sure things will work out but I think what upset me MOST about the entire phone call yesterday, was the COMPLETE lack of understanding. The Dean was so cold. If he said what he needed to say, in a more understanding manner, I don't think I would have been so upset. What would it have taken for him to say, "Mrs. Henley, I'm very sorry to hear about your husband's illness and the problems it has caused, but unfortunately....I'm sorry we just can't help you. Good luck with everything" Instead I got a robot with no feeling or compassion and I believe THAT is what hurt the most.

We WILL be OK.

GoodBye Fordham

Courtney's dream......gone.

I wrote a letter to Fordham's President explaining our uniqe situation. He in turn forwarded my letter to the Dean of Admissions. I called today and spoke with him and he matter of factly, and without any kind of understanding, stated that if Courtney is accepted again this year, we should not expect ANYWHERE near the amount of the financial aid offer she was awarded as an incoming freshman. He told me that my expections for transfer aid were not within reach and he said it rather coldly, completely contradicting the value of the religious basis of the university.
Courtney had applied to Fordham last year and was accepted (she got the acceptance letter when Mike was in the hospital and we were all thrilled). At the time, we thought that was the only hurdle to clear. Wrong.......Truth be told, Alzheimer's Disease has nearly bankrupted us. On SO MANY LEVELS, we are struggling. It is because of the catostrophic situation with Mike and his illness that my credit is shot. I was not approved for a Parent Loan and my credit made me inelligible to co-sign a student loan for Courtney.
Not only has Courtney watched her dad disintegrate right before her eyes, not only has she witnessed and endured more than most people would in their entire adult life , but now her dream of attending Fordham has been squashed.
Right now my even bigger worry is whether Courtney (and eventually Brandon) will be able to continue her college education.
Mike's uncle offered a personal loan to Courtney for this year, but the next 3 years are up for grabs. Without a student loan, we cannot afford college and we cannot get a student loan because she doesn't have a qualifed co-signor. With everything I have done for Mike and the kids, this situation still makes me feel like I'm a failure as a parent.
I write this through tears because it's just one more worry, one more hardship and one more piece of our lives that has been destroyed by Alzheimer's Disease. I've ALWAYS told my children to never give up hope, but right now I'm having a difficult time listening to my own advise.

I had off today to assist the substitute aide for Mike since she does not know his schedule. I planned on using the time that Mike naps to get some paperwork and calls done, but after that depressing call to Fordham and the uncertainty of Courtney's college education, I couldn't concentrate. I accomplished nothing.

I know if I was a single mom, widowed mom or if Mike didn't live with us, Courtney would get more aid. Once again, it seems like we are being "punished" for doing the right thing. Because we love Mike and keep him well and keep him at home, my children's futures are in danger.

Please continue to pray for us.

Rushing

I am getting SO TIRED of rushing for the sake of others. I am forever doing all I can to appease everyone and I can't break the habit. If my mom needs something, I gotta get it. The aide wants to leave early - I rush home so she can leave (even though she comes in late sometimes when I NEED her in on time). If the kids need to go somewhere, I have to switch my schedule around to accommodate them. My boss frequently takes vacations (he can after all, he is THE boss) but when I need to take a day to do something (NOT for myself) I feel bad and he gets upset. I don't think I have taken a day just for myself in Y-E-A-R-S. All the time I have taken from work has been because of aide issues, Mike issues, kid appointments, my doctor appointments etc. - NEVER just for me.
I want to walk to the beat of my own drummer for once. I want to pace myself and get where I get and do what I need to do..... on my own time - not for anyone else. I know I will never be strong enough to follow through with this, but it will remain a dream of mine.

Signs

Hopefully I will be able to meet Mike's hospice nurse on Thursday. The nurse we signed up with had been rotated off Mike's case and we got a new nurse about 2 weeks ago. Unfortunately, because I work, I have not met her. Mike aide has to do "in service" (they go to their agency and sit through a presentation in order for them to keep working) on Thursday, so I will be home to meet her. At that time I will be asking her about Mike's "gurgling". We have been dealing with this for the last year or so, but it seems to be getting worse. It's always after he eats and it takes us a while of moving him, pounding his back etc to get him to cough it up. I can almost say with certainty, that it has to do with his swallowing ability. What I don't understand is why this has been happening for so long.

I recently read a list of "things to look for near the end" and amazingly, Mike has been dealing with quite a few of them for almost a year. The gurgling, the drooling, the cold hands and feet, the contractured arms and legs, being non-verbal , immobile and dropped jaw when he sleeps. His eating has slowed down also and he has lost weight. Mike has never followed the rules, and this gets me quite nervous at times. So WHAT DO WE LOOK FOR? Since Mike has experienced all of the "signs" for so long now, what do I have to guide me?

I would NEVER want Mike to suffer, and I just want to make sure that we are not pushing him too much.

The Oak Tree

I wanted to share with everyone the message of encouragement I received from my friend yesterday. No author was acknowledged.

A mighty wind blew night and day. It stole the oak tree's leaves away,
Then snapped its boughs and pulled its bark until the oak was tired and stark.
But still the oak tree held its ground while other trees fell all around....
The weary wind gave up and spoke, "How can you still be standing, Oak?"
The oak tree said, "I know that you can break each branch of mine in two,
carry every leaf away, shake my limbs, and make me sway.
But I have roots stretched in the earth, growing stronger since my birth.
You'll never touch them, for you see, they are the deepest part of me.
until today, I wasn't sure of just how much I could endure.
But now I've found, with thanks to you, I'm stronger than I ever knew.

I hope this helps each and every one of you when you feel like giving up.