Smelling The Roses

Depsite all the ugliness of this disease, it DOES allow the kids and I to take some time "to smell the roses".

Quite often at night, I will sit with Courtney and Brandon on the couch and we will just "talk". We give each other back rubs, foot rubs - whatever may be aching at the time. Whether it be Courtney or Brandon, whoever's turn it is to help with Mike when we get him into bed, the kids and I use that time to talk privately about "whatever". They like it this way, because they feel that Mike is included in the conversation. He "listens" and that makes the kids feel that he's still an integral part of their lives. Part of Mike's bedtime routine, is massaging his fingers and hands so that they don't tighten up. Courtney or Brandon put cream on his hands and massages them. Mike is so comfortable by the end of the process, he's already sleeping. How many other families can say that their children massage them every night before bed??

In the morning, when I'm waiting for Mary to come and get Mike ready, I sit on the edge of the bed and massage his legs and feet. Everything I've ever read regarding Alzheimer's, says that even though patients cannot communicate with words, they can often "connect" with their loved ones through touch. We are CONSTANTLY holding Mike, rubbing him and letting him know that we are there.

In this crazy life we all live, I feel that these prescious moments are unique. We are blessed to be able to smell those roses. We have been given this time, not only with Mike, but with each other, so that we can truly appreciate all that matters.

World Alzheimer's Day

Today is Alzheimer's Awareness Day. People all over the world wore purple today in an effort to bring awareness of this terrible disease. We did our part by wearing the T-shirt we received from the Memory Walk last week. (pictured at right). We wore it loudly and proudly.

Everything went well yesterday with Courtney and Brandon. I breathed alot easier when Courtney walked in the door from her night out, but still had to wait up for Brandon who got in at 12:15 a.m.

Friday night went well with our visit from our Pastor, Father Ralph. He was running late between appointments, but he still took the time to spend about 1/2 hour with us. The kids were very comfortable with him and found much enjoyment in his stories. We promised to have him back one night, when the kids and I could spend some time talking with him (Courtney plans on making her famous Monkey Bread for him). The night ended with a beautiful prayer with Mike.

Home Alone

Today Courtney had a party to go to, and I was supposed to be meeting with the Newspaper people. I was trying to figure out how I could get her there, and then it hit me...... She has her driver's license - she could drive herself. As much as it scared me, I let her drive herself to her party (which coincidentally happened to be a surprise party for her, given by her friends). I realized that it would happen one day, I just can't believe it's happening already. I watched her drive away and realized that nothing will ever be the same. Her pulling out of the driveway signified so much more. Now I will be sitting on pins and needles waiting for her to come home. The first of MANY more nights to come.

Bandon had been bike riding with his friend when he called to ask if he could go to the movies tonight. Brandon and his friend will be going to a 9:30 movie. Granted, his friend's mom and younger brother will also be going, but he will be out also. My kids have a better social life than I do.

I will be home alone, waiting up for my children. It seems like right before my eyes, in the blink of an eye, they are adults. Where did time go??? I wonder what Mike would be saying and doing if he were well. I KNOW he would be so nervous for his "little girl" driving, and so proud of his "little boy" for being the man he has become.

I need Calgon

Yesterday was "OK". We've noticed that Mike eats better in the morning than he does later in the day for dinner. Last night, he didn't eat dinner. He started coughing and Mary stopped - just like I asked her to. He DID drink all day, but he was also dry most of the day. For that reason, I will be calling hospice to see if they can put him on an I.V. for a couple of days to help replenish the fluid Mike lost on Monday. Because of the fever, he didn't drink as much as he usually does PLUS he must have sweated out at least a glass of water when the fever broke. It doesn't take much to throw Mike's system off. Hopefully they will OK the IV (they did tell me that they DO allow it sometimes). I will be calling his nice nurse - Christa - directly, so I don't have to get upset leaving messages.

One of the most difficult things to deal with during this time, is also having to deal with life's everyday issues. Tuesday night, after the day that I had on Monday, I had to go to Brandon's Meet The Teacher Night. I was exhausted and looked like a mess. Somewhere along the way, I have to get an oil change (the oil light in my car has been on for a week), food shopping must be done and then there's Courtney and Brandon - they need my attention and love just as much, if not more, than anyone else. When I am preoccupied with Mike's problems, it's so difficult to focus on all the little things that need to get done. Apparently I had a doctor's appointment today that I forgot about and have to re-schedule. And of course, I need to go to work everyday. Tonight is Courtney's Meet The Teacher Night.

Anyone remember that commercial..........Calgon, take me away!!!!!!!!!!

Update - I didn't call the nurse (YET) regarding the IV because Mike has been "going" today. If he continues, I will hold off. If for some reason, he doesn't put out what he should, I will call the nurse. I just don't want him to get dehydrated.

God's Gift

Mike's "regular" hospice nurse came yesterday and gave him a thorough exam. Apparently, he DOES have congestion in his right lung (they feel he aspirated). The nurse that came on Monday night did nothing to check him out because I don't think she personally wanted to treat him. Mike started antibiotics this morning, and we hope that will help clear up the problem. His fever never came back after it broke early Monday morning (around 1am) - which is a good thing. He ate and drank yesterday, allbeit, slowly and less than usual.

I've said it before and I will keep saying it, this disease is the most hideous, unforgiving, ugly diseases out there. Just as you prepare yourself for the worst, things change and then remain "constant" for a while. This has happened to us 3 times before and I'm sure it will happen many times more, before this disease takes Mike. The emotional and physical stress this puts on ALL people; patient, family and friends, is ENORMOUS.

We've never been a family to say "why me", but being human as we are, we do all begin to question things. After our low point the other night, I got an e-mail from our Pastor. Apparently he had seen a re-run of our story on LI News (Telecare) and just wanted to let us know that he was there for us if we needed anything. Well, being a strong believer in "things happen for a reason", I e-mailed him back and asked if he could come by to talk to me and the kids, since things are getting more stressful. Strange as it may seem, I hope that his e-mail was a gift from God saying, "Here he is, let him help you". Father Ralph will be coming by on Friday for a visit. This will be the second time that Father Ralph "showed up" out of the blue. When Mike was in the hospital a few months ago, Father Ralph was waiting for an elevator just as the kids and I were going to the coffee shop. He came into Mike's hospital room and said a prayer. In my heart, I truly feel that God sent him to us because we needed him.

Every day is a new day and when it's over, I take a long hard look at Mike and thank God for the gift of letting us have Mike for another day.

Hospice Nightmare

I called Hospice yesterday morning at 9:40. I had to leave a message. I called again at 10:20 and had to leave a message. About 1/2 hour later, a nurse called back and went through things with me, as far as what was happening with Mike and what I should be doing. I asked if she could send someone to check him out and she said that they didn't have any available nurses. She said she would call back "in a little while" to see how Mike was doing. Our aide gave Mike fluids after I had given him Tylenol- he had about 4 1/2 cups. Then he went into bed for his nap. About 1:20 after not hearing back from Hospice, I put another call in and left a message AGAIN. I asked that they please find a nurse to come out and evaluate Mike, his fever was back. I explained on my message that I was told I would have access to 24/7 care and I could not understand why they couldn't get someone to come and check Mike. About 2:00 I got a call back and they said they would send a nurse "sometime around 5:00". I had gone into work for a couple of hours and at 3:00 I got a call saying the Mike had labored breathing and that his nails were blue. I left work immediately and called hospice on the way. The nurse told me to increase his oxygen and give him more Tylenol. I asked if they could send someone sooner than 5 and she said she would "try". We had increased his oxygen and within a few minutes, Mike's nails were back to normal. I was home at 3:20. By 5:30 after not hearing from Hospice, I called to make sure someone was coming. The answering service took the message and about 10 mins. later I got a call back from the night supervisor. She said the "shift had just changed" and that someone would be there "shortly". About 10 minutes later I got a call from the nurse who said she was 40 minutes away.

The Hospice nurse got here about 6:45 p.m. I had already given Mike his nighttime medicine which makes him sleepy to begin with, PLUS he normally goes to bed around 7:00...He was out of it. Well this nurse came in, saw how "out of it" he was, noticed that he was drooling and took me aside and informed me that Mike was most likely "beginning the dying process". WHAT!!!!!! She didn't ask any background, she hardly checked his lungs (even after I told him he had a cough) and didn't even look at his infected toe. I guess she only deals with one thing, so that's what it was. Mike has drooled for years and he was tired because it was his bedtime and he just had his medication. I had to ask HER if we could take a urine sample to see if he had a UTI - she didn't suggest it. All of the reasons why the kids did not want me to put Mike on Hopsice, happened last night. A nurse who's never seen Mike, did a 10 minute evaluation and basically said, "this is it". I explained to her that we were told "it was the beginning of the end" in 2005 by his doctor and he was given Last Rites 1 1/2 years ago, but he is still here. She looked like we stumped her and she said, "I hope I'm wrong then". She said the drooling is s sign of his inability to swallow, but when I told her that he had drank 4 1/2 cups yesterday morning WITH A FEVER, she said, "that can sometimes happen, just like that". Well it doesn't happen "just like that" with Alzheimer's, when there's a sudden change, along with a fever, there's obviously something else wrong.

Right now it's 9:44 and I left 2 messages for Mike's regular nurse and the supervisor regarding the specimen pick up, and another check up today - I'm waiting to hear back.

I have no idea what is going on with Mike, but until I exhaust EVERY option and check him for everything, I will not give up on him. Had we listened to the professionals, Mike would not have been with us all these years.

Hangin' On

Today, I feel like I'm hanging on to a life preserver that is ready to sink itself.

Yesterday, I noticed that Mike's toe (the same one with the recurring infection) went from black to green. The whole side of his big toe is the color of grass. I didn't want to panic because the podiatrist had come on Saturday and I know she did something to the toe. I decided to wait until today. Well, Mike woke up with his toe still green and a 101.2 fever.

Now I'm not sure if one has to do with the other, because he also seems to have a cough. Needless to say, I am quite concerned and upset. What was even more upsetting was that it took 2 calls and 1 hour for me to get a call back from Hospice. After the nurse on the phone went through everything with me, and assured me that I was doing "everything right", she said that they didn't have any nurses available to come and check Mike, but that she would call back shortly to check on him. That call was 10:30 and as of now (12:23) we have not gotten a call back.

I'm disappointed because the whole purpose of signing Mike on to Hospice was to know that someone would be there for us and come and evaluate him if necessary. I'm sure if I had said it was an emergency, things would be different, but when I was told that we would have access to 24/7 care, I wasn't told that it was limited to emergency situations. Of course, if I don't hear back from them, I WILL call them to see if someone could come and check his lungs BEFORE it turns into something more serious. As for his toe, the podiatrist is coming later today to look at it and possibly change medications. The Hospice nurse indicated that that would be the best way to handle his toe since the podiatrist has been following it the whole time.

I am once again, SPENT. The only good things I seem to be able to hang on to right now is the fact that we have a home to live in and that me and my children are in good health. Everything else around me, at this moment, seems to be falling apart.

Update: I called Hospice back and they have agreed to send someone to check on Mike sometime after 5pm today. The podiatrist is also coming around that time. Mike's fever went down after the Tylenol and I hope it stays down. I worry because with Mike, a fever is usually always a sign of something bigger. As I mentioned, I just really want to keep Mike out of the hospital and if something can be caught before it gets worse, than that's my goal. If need be, I think they can also order blood tests.