We took our vows 23 years ago today....

Today Mike and I are married 23 years. I am having a tough day. Taking the past few weeks into consideration, I am having a terribly emotional day.

It's no doubt that I think back to exactly what we were doing 23 years ago today. Ironically, I remember being concerned that Mike wouldn't make it to the church on time because he was ALWAYS late. I had to count on his brothers and best man to get him there on time. On 10/28/88, it was about 65 degrees with a little bit of rain. I was upset that I couldn't take pictures of me and my bridesmaids outside in front of my favorite dogwood tree (the color at the time was amazing!). The photographer saw me staring out my front door and asked what was wrong, so I told him. I had forgotten all about that conversation for the bulk of the day until it came time for us to leave for church. As we were walking down our front walkway, the photographer stopped me so he could get a picture of me in front of the dogwood. I remember that when my brother-in-law did his reading at church, he would sniffle and his mustache would go up at an angle. When Mike and I lit our unity candle, he whispered "don't drip, don't drip" to me, but when it came out on our video, Mike sounded possessed. I remember crying so hard walking down the aisle with my dad I thought everyone would notice my quivering lip as I tried to hold in my tears. After giving me away, my dad stepped on my gown as he walked to the pew and as I turned toward Mike, my head wouldn't move.

Once at the venue I remember taking all those pictures. I even made our groomsmen take their shirts off for a funny picture (I know Mike's two brother were NOT happy, but Mike's friends were OK with it). We didn't have anything to eat for the cocktail hour, so we were starving when the reception came. Our first dace to "Follow You Follow Me" was very special and even now, when friends hear that song on the radio, they comment to me about it. It wasn't a "traditional" 1st dance song at the time. My niece got hit in the head with the microphone that they passed around the table for the video. My Aunt and Uncle (brother and sister) fought for the bouquet and garter (you heard me?!) We cut the cake and Mike was NOT nice. He gave a piece the size of the plate and I KNOW I was still chewing on it when they called me to do the dance with my dad. I didn't think I would ever make it through the dance - "Tangled Up Puppet" by Harry Chapin. At the end of the song, I don't know who was crying more, me or my dad. I wasn't even sure if my dad and I would do a special dance, since Mike didn't have his own mom to dance with (she had already been in a nursing home for 3 years by then). I didn't want Mike to feel bad, but true to his nature, he wouldn't NOT have me dance with my dad.

There are SO MANY more memories of that day, and the truth of the matter remains that Mike doesn't remember any of them. I woke up at 5:30 this morning and looked into Mike's vacant eyes and wished him a Happy Anniversary. It's our special day, but he will never remember.

Sores

Mike's sores seem to be getting worse. Having researched on line (which I know is a bad thing to do) I found out that sores are never really considered healed nor is their status downgraded. Basically if Mike had a Stage 3 bedsore and it seemed to look better, it would never be upgraded to a Stage 1 or 2. They can very easily turn back and that's exactly what they are doing. His shoulder which had been healed, is now so bad it's infected, as well as one on his thigh. The one on his bottom is so bad I can't even look at it anymore. As they were being cleaned yesterday, I had to give him morphine. I hate giving him morphine because to me personally, morphine = the end. I could not in good conscience, NOT give it to him, he was moaning terribly. Tylenol just wasn't going to cut it, so I gave him 1/2 of the dissolvable pill hospice had prescribed for him. This did not sit well with Courtney, but I just could not have Mike suffer.
I worry that this will be the first of many doses and that scares me.
I had to set my alarm again last night for every 2 hours so that I would make sure I was up to turn him so he would not spend any part of the night on his butt, yet you could never tell by the way his bottom looked today. I gave him another 1/2 of pill again today....at least there was no moaning.
These sores scare me. This is what Christopher Reeve passed away from and I'm sure he had excellent care 24/7.
I keep telling myself that I have done and will continue doing the best I can. I love Mike and I will make sure he does not suffer.

A Walk to Remember

Yesterday was such a beautiful day, we decided to take Mike for a walk. He LOVED the fall, as do I. Our 23rd wedding anniversary is Oct. 28th. The weather in the fall is beautiful: crisp, cool mornings, sunny, cool, windy days and cool nights. Not freezing, just enough to make you feel good.




Before yesterday, Mike had not been outside in 3 years!! Except for those occasional trips to the ER via ambulance, which don't even count. Since yesterday was sunny and warm, we decided to finally get him outside. Here are some pictures we took.





Pictured: Gail (my sister), Frank (my brother), Mike and I

Courtney, Gizmo and Mike

Mike and I

Family Weekend

This past weekend was "Family Weekend" at Quinnipiac. I arranged for our weekly aide to spend Saturday night with Mike so Courtney and I could attend. This weekend made me realize that this will be the last time I will be able to be away from home without one of the kids staying behind to help with Mike.

To begin with, instead of our aide arriving to work at 9am on Saturday, she got there at 9:50 - never apologizing.

For Sunday, I told my mom that she can come over about 8-8:30 in the morning (later than she normally does) because Elaine (our regular aide) would be there until our Sunday aide (Blanca) arrived. Well unbeknownst to me, Elaine told my mom she wanted her to be at the house by 7:30 and once my mom got there Elaine left. When Blanca arrived, Mike was saturated in urine and practically hanging off the bed. Blanca is so sweet, never says a bad word about anyone. She also has a difficult time speaking English. When I got home and my brother told me that Elaine washed Mike's clothes but left them for Blanca to fold, we explained to Blanca how Elaine told us she was "allergic" to folding wash. Elaine claims her doctor told her that the particles that fly through the air as you shake the wash before you fold make her sneeze - therefore she's allergic to folding wash. Blanca yelled out "That's bullsheet" (accent). When Elaine called up later to tell us she would have to take off today to take care of a matter with a deadline of today, Blanca yelled out "liar, liar" in the background.

Yes, I think Elaine is playing us for a fool, and I think she thinks she gets away with it, but she doesn't. I put up with all her "bullsheet" because the agencies cannot find an aide who is comfortable transferring Mike via hoyer. I call her out on quite a lot, but I have to pick my battles. Mike's well being is always priority!

Needless to say, after the way she took care of Mike this last time, I will not feel comfortable leaving him with her again.

On the plus side, we all had a good time visiting Brandon. Of course, Courtney was a little annoyed with me because once again I got emotional when all I saw was moms and dads. I couldn't help it. It's times like those that I'm shaken out of my "robotic routine" and see all we are missing as a family. There was just no way around it. I'm sure there were single parents there somewhere, I just didn't see them.

Not Sure How He Does It

I had to change the dressing on Mike's sores last night and today. I actually had to say a little prayer before I did to give myself strength. They look horrible. I cried the entire time and tried calming him by telling him I was trying to help him. They look worse than ever and I just don't know how he does it??!! How does he deal with that pain each and every single day? I give him Tylenol as needed, but every time they are cleaned out, packed and dressed, he winces, shakes and makes a sound that sounds like he's crying. I HATE IT!! I just can't imagine what he is feeling and there's no way for me to stop it. Hospice gave me Morphine to give him, but I know once he starts getting that, there's no turning back.
I have been in a funk the last few weeks. I have been feeling like I felt when Mike was first diagnosed. My heart aches for him and I wonder what he's thinking and feeling. I understand there needs to be suffering in the world so that people can truly appreciate it when things go well and they feel good. But how much suffering can one disease bring and how much suffering can one person take??? There but for the Grace of God.....

"S", Sores and Book

Mike had another "S" yesterday and it was pretty big (it lasted a long time). Courtney was with me, and I believe it was the first time she actually witnessed one. Once this happens, I need to give him medication so he doesn't get another, but the side affects of the medication is drowsiness. The "S" itself causes the person to be totally exhausted afterward, and then add medication to that, and Mike was out of it. Unfortunately, it was time for him to eat dinner. I tried giving him drink and food, but he just kept coughing. I decided to stop giving him anything, because I surely did not want him to aspirate. He went to bed last night without his usual dinner and drink. He's down to eating so little to begin with, it saddened me that he missed out on what he usually gets.
This morning, his sores didn't look well....still. The one on his thigh looked a little better, but the one on his shoulder that had pretty much healed is now open again and the one on his bottom looks bigger (although both Courtney and Elaine feel otherwise). Mike has had some congestion again and for the past 3 days, he hasn't been coughing it up. It's no wonder I don't sleep well when I have Mike gurgling next to me. The chest P/T we give him hasn't been helping and I'm not sure what's going on.
Last night, Courtney and I met had our first meeting about our book. We met with the person who will be writing it and we're so glad she's willing to work with us on something so important. For YEARS I have been hearing "you should write a book about this", well now it looks like we're on our way. It will not happen overnight since we both have full time jobs and other commitments, but the fact that we spoke about the direction it will go and what we need to do to propose the idea etc., is a HUGE step in the right direction. I am SO READY for the world to know about Mike and his struggles, his strength and his bravery and the way in which our children have overcome this heartache. This could be my ultimate advocacy project yet!!!

When All Else Fails...Laugh

I just have to laugh.
Since our friends held the fundraiser for us this is what has happened:
- I had to repay the bulk of what I owed to Mike's Home Health Agency
- The pipe under our kitchen sink broke and had to be replaced
- The kid's car needed a muffler system/etc
- Our dishwasher broke
- My car had a flat tire and required 2 new tires
- Brandon was injured and has needed continous dental work
- Our refrigerator broke (on Monday)
- A pipe burst in our basement (last night causing the basement to flood and will require us
to completely empty out all it's contents and drain water)
God always makes sure we have JUST ENOUGH to take care of what we need, but he doesn't want me to be comfortable enough to have a cushion.
I don't want to say things can't get worse because I KNOW they can, but seriosuly can I get a small break???

Missing Time Away

I find myself growing very tired more often. Years ago, I remember reading the blog of a woman who's both husband and daughter were diagnosed with Young Onset Alzheimer's. She cared for her husband at home for 12 years and I remember thinking, "that poor woman she must be so tired". Well next April, Mike will be sick for 11 years and I already know what she must have felt like.
It doesn't take much to upset our routine. Brandon's injury to his tooth at school has already been difficult to deal with. Financially - we're already up to $900.00 for the dentist and that does NOT include the travel expenses of Brandon going back and forth to Connecticut. Then there's the time involved - whether he takes the train home (which could take him 6 hours depending on the schedules and whether he catches the right train) or I take him back and forth (a round trip takes about 5 hours), we are EXHAUSTED. It takes so much time out of my already depleted schedule and it takes time away from his coursework and/or classes. Finally, for Brandon there is also the physical pain of dealing with a tooth broken in half under his gum line - trying to eat without using his front teeth, trying to clean his teeth in order to prevent infection and the daily annoyance of it all. This has been difficult to deal with, but it MUST be done in order to try to save Brandon's tooth.
The there's the fact that caring for Mike has become even more tedious. I don't want that to sound bad, but the truth is the truth. It now takes about an hour (on a good morning) to clean him and dress his wounds. There are the dreaded mornings when after he's been cleaned and the wounds all dressed, that he goes to the bathroom and we have to start all over again. We all do it because we love Mike and want him to be at home, but the fact of the matter remains is that is more and more time consuming.
Then I have the constant struggle within me as to whether we are doing this for ourselves and if in fact Mike is also getting tired. Does he struggle each day for US? Is he dealing with the pain of 4 bedsores because he doesn't want to disappoint us?
The fact that neither myself and my children have had a REAL vacation together in 5 years may add to the tension and struggle. Courtney and Brandon have both been lucky enough to have taken short trips with their school and of course Courtney went to London (for school) for 5 weeks. They need that break to get away from it all. For me, I haven't been so lucky. I've taken extended weekends for graduations, move-ins etc., but not REAL VACATIONS!!! A normal healthy family needs some respite time away, to clear the mind and rejuvenate themselves. A family dealing with a health crisis definitely deserves a vacation even more, but quite often, it's just not possible. I dream about the day when I can lay on the beach, swing in a hammock, read a book, have a drink and DO NOTHING. The guilt that those dreams bring is immeasurable because I know the only time I will be able to experience a true vacation will be when Mike has left us. I think there should be some sort of respite project in place for 24/7 caregivers (of any ill adult or child) so they can get away to recharge their batteries. We did that a few times before Mike's illness progressed and I had my salary cut. I can tell you first hand how much a vacation helps the body, mind and soul. Even though we had missed Mike terribly, when we came back we were all better caregivers. I came home to the normal routine, but I had a much needed break and that made such a difference. Then I sit and wonder - even if I could afford a real vacation, would I have peace of mind while I was away? Probably not, I would just be worrying about Mike. Ideally it would be great to go away and be able to leave your loved one in the hands of capable, professional nurses and aides 24/7 so that peace of mind can be attained. Unfortunately, there is no program around that would provide this sort of respite and that's sad. Keeping Mike at home is my choice and I wouldn't change it for the world, but it would be so nice to escape every now and then.